The wolf was really active all summer and did his best to blow down my house. My body is bruised and battered from our daily battles with rashes up and down my arms and, as always, my wolf face. I look in the mirror and see the wolf staring back at me from my green and gold eyes to the malar rash that spreads across my cheeks and nose. The wolf smiles because he thinks he's winning. But I know that I will never give up so he will NEVER win.

I am certainly maimed; the rashes up my hand and forearms look like burns and my "blush" no longer can be passed off as rosy cheeks since it extends from my jawline to my forehead and across the whole bridge of my nose. My body is so tired of fighting; I wake up every morning exhausted from the night's battle. If it was up to my body, it would have quit a long time ago. But not me. I will never quit and the wolf knows it. That is why he chose me; the wolf loves a challenge and he loves the hunt. His determination is almost as strong as mine.

Th wolf has gained a lot of momentum as the years have passed and my illness has continued to progress from lupus to lupus plus osteopenia, sjogren's syndrome, Raynaud's phenomenon, and more. There is so much more to add to that list but that's for a future post. The wolf really believes he is going to win soon, and I feel his strength growing in me as he senses my body weaken more and more. I am hanging on the edge by my fingertips but I still will never quit. I was born a fighter and will die fighting.

The wolf has been been waiting a long time, silently stalking me. He preys on weakness so I must remain strong especially at my weakest. I must believe I am stronger; it's my only chance of survival. I am a fighter, I am a survivor and I am stronger than the wolf. I'll blow his house down before he does mine.
 
Keep fighting, my warrior friends, and never let anyone or anything break your spirit.  

xoxo
 
Lupus Celebrity

Sunday October 2, 2011

While I was hibernating the summer away fighting the wolf, I listened to a lot of Lady Gaga and did a lot of thinking. I highly recommend both.  Lady Gaga has changed my life in immeasurable ways but that's for a future post.  Anyways,  I thought a lot about my life and what I've been through. ;Because I've been through a lot. ;Not like, born in the Sudan fighting for my life lot, but heaps of dysfunction.  And the saddest part for me? The little girl lost. ;I was born such a happy, full of life, trusting kid who had to learn quickly how to fight and was never able to stop fighting for long.  Never able to feel safe, to get out of the corner with my back up against it, waiting.  I fought well for so long that I grew cocky.  I never believed I was immortal but definitely believed that I was emotionally infallible and  that nothing would EVER cripple me.  Until many years later, I was finally infiltrated, attacked, wounded and eventually, heart-wrenchingly crippled while I was at my weakest by  some wolves in sheep's clothing.  Crippled, but still breathing, and still fighting...we can NEVER stop fighting, my friends, even holding on clinging by the tiniest grip of  our fingertips,  never stop fighting, EVER.

At the time of the crippling attacks,  my journey in life had taken me so far away from who I was born to be.  The little girl that God created for a reason was long forgotten.  My purpose in life, the reason God made me and continues to keep me here while others have to leave every single minute of every single day wasn't ever considered by me.   I had been chipped away at so many different levels in so many different ways that I no longer knew who I was and forgot to care.  All of life's damaging blows and my reactions to it had made me who I was.  A broken woman.  Since then, I have been on the rocky road of healing and getting back to  the person who God intended me to be; the women I should have been;  the woman God created me to be.  I had one of many life epiphanies I have been blessed with and it became  clear to me with 100% certainty  that I need to be the person that God created me to be to have any chance of lasting happiness.    I am so far from that with a lot of scars and baggage and  dysfunction that I need to overcome.  No, that's not true, they're not all scars, a lot of them are still wounds that may never become scars if I don't let them heal and stop picking at them. 

It feels like I am peeling away layers of an onion and with every painful peel that always results in lots of tears and eventually leads to some healing, some more clarity and sometimes a small step and once in a while a big step closer to becoming who I am meant to be.  At the same time, the process exposes so many more  layers that I need to  eventually peel  back even further and  explore to keep growing and healing.   Sometimes it's quite  daunting and exhausting both emotionally and physically;  I keep reminding myself that life is a jouney not a destination or race.  I still have my back in the corner facing the world and that might never change but I try as much as possible not to have my fists up awaiting the next battle.
 
So these past 200 + days that you haven't heard from me I thought a lot about what I have overcome up to now and what I still need to overcome to become the person I was created to be.  And how the journey will be worth it once I am fully living as the person God intended me to be before life changed who I was so significantly yet also so slowly and cunningly over my life time .   In another blessed epiphany, I finally figured out what I want to do with my life.  I have found my purpose.  I finally get it, the pieces of the puzzle of my life fit together in a way I could never have fathomed before,  my purpose clear.   I need to share my journey with you.  Despite it being so difficult for me to share my pain and be honest with others to this scale, I know that is what I need to do.  There is a reason I had to, and continue to, go through intense experiences  that  cause such extreme emotional and physical stress and  hopefully that reason is to help  you.  And in turn, to help myself.  To do that,  I have no choice but to honestly share so  you can fully understand  the  lessons I have learned.  Because if any of those lessons help you,  then it makes the  blood, sweat and tears it took to survive them worth it in my heart and soul.   I have spent too many years surviving, I choose  to thrive today.  I hope you thrive today too; you  deserve it and God loves you with all his heart.  Now we just  have to learn to love ourselves as much.

xoxo,

Heather

P.S. ~I am going to try my best to post more often  but I need YOUR support or I know me, see ya in 200 more days, lol.  I am trying very hard to just plant seeds and water my garden and be patient but it is so hard for me with no feedback.  I need encouragement!  So please next time you are on Facebook, search Lupus Celebrity and Become a FAN of my page so I know you are out there listening.  

Hi I'm back! It's been 200+ days since my last post; this is what happened. I was only getting comments from web crawlers and people who want me to enlarge my penis size so I got discouraged and quit. That's why I always ask for comments. I always quit things far too quickly that are good for me; I truly am my worst enemy. I started believing that the only people who visit my blog are web crawlers and spammers. But the other day I went on my website for the 1st time since my last post and saw how many of you visited. I couldn't believe my eyes! You are still here and growing. You didn't quit on me even though I quit on myself! I love you and thank you from the bottom of my heart for staying loyal. You made me believe again that I can make a difference.
 
So I am going to start posting again but turn off comments to avoid spam. If you want to contact me, you can on my Facebook page Lupus Celebrity. If you haven't liked me on Facebook yet, PLEASE do. See, now I am going to be begging for Facebook fans instead of comments :-). I am sorry if it gets old but I know me and if I don't think you are out there listening, I won't keep posting. I will also post on my Facebook page almost every day so you'll hear much more from me there than on the blog as long as you "like" my page. Again, THANK YOU, it is great to be back and doing what I believe I was born to do.

Once you have "liked" my page on Facebook, please consider liking the Alliance for Lupus Research. They are a voluntary organization founded by Johnson & Johnson owners. 100% of donations goes to lupus research which is kind of unheard of today and makes me respect the organization so much. So more important than liking my page, please help me and yourself by supporting the ALR by liking their page. See the end of this post for even more information on ALR.

xoxo 

Lupus Celebrity

ALR: The Alliance for Lupus Research (ALR) is a national voluntary health organization based in New York City that was founded in 1999 and is chaired by Robert Wood Johnson IV, a member of the founding family of Johnson & Johnson. In just 10 years, the Alliance for Lupus Research (ALR) has become the world’s largest private funder of lupus research. To date, the ALR has committed $65 million to the most progressive and innovative research projects around the globe. 100% of your contributions to the ALR go directly to support lupus research programs because the ALR's board of directors funds all administrative and fundraising costs.
It's mission is to find better treatments and ultimately prevent and cure systemic lupus erythematosus (SLE, or lupus), a debilitating autoimmune disease through medical research.

Get in on it and help us find a cure. Give $10 by texting “Lupus” to 85994. Message and data rate apply. $10 will be added to your phone bill. 

REMEMBER THE FULL $10 IS DONATED 100% TO THE ALR!!!

In November 2010, a FDA advisory panel questioned the effectiveness of the experimental lupus drug being developed by Human Genome Science.  While the FDA panel recommended approval of Benlysta, they raised enough concerns about safety that U.S. sales may be limited.  The FDA initially put Benlysta  on a 6 month priority review. The FDA usually takes at least 10 months to review drug applications but it grants priority review to drugs that could provide major advances in treatment.  With no new lupus drugs in over 50 years (last lupus drug approved was in 1958), any lupus drug should be given priority review.  Approval was expected to occur in early December 2010 but instead the FDA decided to extend the review period by 3 months.  The FDA should make a decision around March 10th.

Supporters of Benlysta, which would be Human Genome’s first marketed product, believe it works well enough to outweigh the risk of suicide, infection and cancer, the panel said.  2 of the 15 members of the panel voted against recommending approval. The drug’s recommended approval came while public criticism increased due to Benlysta's modest benefit and lackluster results in U.S. clinical trials.  Its restrictions and thin efficacy (therapeutic effectiveness)  is drawing mixed feedback from rheumatologists.

Benlysta, an intravenous drug also known as belimumab, inhibits the production of antibodies that attack healthy cells in lupus patients.  FDA approval of Benlysta may “usher in a new era of enlightenment” in lupus research, Sandra Raymond, president of the LFA (Lupus Foundation of America) testified prior to the Advisory Panels' vote. Raymond was one of more than 30 speakers who spoke in favor of approval of Benlysta before the panel voted.   Benlysta’s risks of suicide, infection and cancer were greater in patients taking Benlysta than those patients taking a placebo in clinical trials.  The panel reported that the drug was effective but lacked robustness (strength).

Benlysta is still likely to gain approval because it met its primary goal of reducing patients’ symptoms in a 52 week trial. The FDA’s knowledge of the urgent need for more lupus therapies may outweigh their concerns that the drug may not be safe or effective enough. Benlysta, if approved, would be the first medication developed specifically for lupus.  Prednisone and some antimalarial drugs were already approved for different conditions when the FDA approved them for use in lupus patients more than 50 years ago.
The chemotherapy drug cyclophosphamide, methotrexate and Cellcept, used in organ transplant patients, are among medications prescribed for lupus patients without FDA approval. While FDA rules allow doctors to prescribe drugs for unapproved purposes, companies can’t market the treatments for those off-label uses.  Also, some insurance companies will not cover the drugs or have extremely high copays since they are not specifically approved for use in lupus patients. The long-term use of existing lupus treatments can have debilitating side effects that can be worse than the disease itself, Sandra Raymond said, citing stroke, heart attacks, bone loss, hypertension, infertility and infections are possible side effects.  Benlysta will not  work for everyone.   Candidates will include patients who have failed previous treatments or require high doses of prednisone to control their symptoms and want to reduce their dosage to prevent side effects.  

My opinion?  Benlysta is not going to be the miracle drug that the lupus community is in desperate need of.  Most analysts believe Benlysta will be approved but that it will only be prescribed to a small percent of patients.  I know when I was in my last really bad flare, I had to be on prednisone for about 6 months.  I already had osteoporosis and steroids weaken your bones but there was no other option.  I ended up fracturing both of my feet and my doctor warned me that if I fell, I would probably break my hip since my bone density got worse from the steroids.  Fortunately I was able to wean off prednisone after 6 months.  If the side effects were not so significant, I would have wanted to stay on steroids forever.  When I was on high doses of prednisone, I felt like my old self for the first time since I was diagnosed with lupus over 5 years ago.  But it is a double edged sword because of all the side effects.  But at this point, there is no other option for many lupies.  Sometimes the only thing to save us are steroids so it has to be prescribed despite the risk of debilitating side effects.  So for lupies who need to be on steroids long term, any drug that could potentially wean them off them would be welcome.  My concern is that its effectiveness will be short lived.  The results of the clinical trials at 76 weeks (18 months on benlysta) showed that its effectiveness diminished after one year.  So it might be prescribed as a short term therapy only.  If lupies can even take a year off steroids, I am sure most would welcome it.   So my answer to the question is Benlysta what we have been desperately waiting for?  No, it is not the wonder drug that we have all been waiting for but it will help some of us.  The successful approval of a lupus drug should motivate other pharmaceutical companies to spend more money on lupus research and development of new treatments.  So I am hoping for approval of Benlysta and for the development of even better drugs in the short term that will help more of the lupus population.

 For more information on Benlysta, please see my post Details On

Benlysta published on  2/16/2010  

                                                                                                                     
xoxo

 

L.C.

>

> Toni Braxton has lupus, the singer revealed November 16th, while accepting a "Woman in Achievement" award at the 8th Annual Lupus LA Bag Ladies Luncheon. She told the audience, "Today I'm going to talk about it because I'm a survivor and I'm here, and I don't want to lose hope."
>
> "Take a look -- this is what lupus looks like," she said. Toni later tweeted that revealing her struggle with the disease was "a big moment for me. It was a tough decision to come out about it. But it was such a relief!".
>
> Lady Gaga bought advertising space in support of the event and wrote a touching message in the program, "Toni, your strength is admirable. As a woman whose family has been affected by lupus, I understand your struggle and have you in my thoughts.". Gaga showed other celebrities that not only was it okay to disclose you have lupus but that you also get significant press coverage and it can benefit your career. The lupus coverage for Gaga was something I haven't seen before or since and she has single handedly in my opinion had such an impact on putting lupus in the spotlight in 2010. And its a family commitment. In Lupus Now Fall 2010 issue there was an article abut the NewYork City Butterfly Gala and there is a picture of Lady Gaga's parents attending the event. The tagline does not mention Gags, just simply Joseph and Cynthia Germanotta. There anonymity really impresses me since most people do jot know Lady Gaga's birth name. Snoop Dog also had such an outpouring of support and now Toni. Toni mentioned in her speech that she faced a great deal of pressure throughout her career to keep her health problems a secret.
>
> I was't a big Toni Braxton fan before hearing she has lupus. I knew she filed for bankruptcy twice and that she has had heart issues. Ends up she suffers from pericarditis, an inflammation of the heart lining that is common in lupus.
>
> I didn't watch her on Dancing With the Stars or hear about her benign tumor in her breast until after her lupus announcement. I learned she has two little boys and is going through a divorce from the children's father. One of her children has autism and she is active in autism causes. Even though I wasn't a fan, I kept an open mind because it is important to me to support celebrities who are brave enough to disclose their disease and put a face to lupus. So I checked her out on You Tube and was pleasantly surprised. I had forgotten how incredible her voice is and she is absolutely gorgeous. There are some clips where it looks like she has a little moon face probably from prednisone but she maintains such a gorgeous figure which all lupies know is pretty much impossible on prednisone. I LOVE her song off her latest album Yesterday with Trey Songz. I bought the video so I am going to try to upload it but no promises. Technical skills is not one of my gifts . But nonetheless, support our fellow lupies and borderline lupies by visiting their websites and check out their videos. www.tonibraxton.com and www. ladygaga.com
> Toni is supposedly getting her own reality show on Bravo with her sisters who are just as beautiful as Toni. It should be a great success and has the potential to really show the reality of living with lupus.
>
> So Toni lands a new show after her last album flopped and Dancing with Stars didn't revive her career? Everything changed after her announcement she has lupus, she began garnering a lot of attention leading to these new opportunities. How awesome, see, Lupus can be good for your career . Thank you for your bravery Toni and keep fighting fierce!

~Dance Like No One's Watching~

We convince ourselves that life
will be better after we get married,
have a baby, then another.
Then we are frustrated that the kids aren't old enough
and we'll be more content when they are.

After that we're frustrated that we
have teenagerst

to deal with,
we will certainly be happy
when they are out of that stage.

We tell ourselves that our life will be complete
when our spouse gets his or her act together,
when we get a nicer car,
are able to go on a nice vacation,
when we retire.
The truth is there's no better time
to be happy than right now.
If not now, when?

Your life will always b with challenges.
It's best to admit this to yourself
and decide to be happy anyway.
One of my favorite quotes comes
from Alfred D Souza.

He said, "For a long time it had seemed
to me that life was about to begin -real life.
But there was always some obstacle in the way,
something to be gotten through first,
some unfinished business,
time still to be served,
a debt to be paid. Then life would begin.
At last it dawned on me that these
obstacles were my life."

This perspective has helped me to see
that there is no way to happiness.
Happiness is the way,
so, treasure every moment that you have.
And treasure it more because you shared it
with someone special,
special enough to spend your time...
and remember that time waits for no one.

So stop waiting until you finish school,
until you go back to school,
until you lose ten pounds,
until you gain ten pounds,
until you have kids,
until your kids leave the house,
until you start work,
until you retire,
until you get married,
until you get divorced,
until Friday night,
until Sunday morning,
until you get a new car or home,
until your car or home is paid off,
until spring, until summer,
until fall, until winter,
until you are off welfare,
until the first or fifteenth,
until your song comes on,
until you've had a drink,
until you've sobered up,
until you die, until you are born again
to decide that there is no better time
than right now to be happy...
Happiness is a journey, not a destination.

So, Work like you don't need money.
Love like you've never been hurt and
Dance Like no one's watching.

~Author Unknown~

Sent from my iPad

Begin forwarded message:

> :  
> Date: January 3,  2:28:06 AM EST
> To: "blog.lc.com@myqbc.mobi"
> Subject: Happy New Year!
>

> Happy New Year
>
> I have so much to be grateful for as we start 2011 and reflect on 2010. My wonderful family, friends and the blessings that have been bestowed upon me.
>
> I am so thankful for this blog and my loyal readers. Thank you for your support of me whether I posted every day or every other month. I had some technical difficulties on my site and I am so happy to be back online with the help of Go Daddy Thank you for all of your comments; it has meant the world to me to have your unwavering support. This blog has done so much to heal me emotionally and as an outlet for me. And I hope in the process i have helped others as much as all of you have helped me.
>
> I usually don't talk too much about the New Years resolutions that I make since they are forgotten a few weeks later. But this year I am determined to keep one resolution to not live my life in fear. I have lived my whole life making decisions based on my fear of the unknown, fear of change, whatever the cause, fear has dictated my life. I am done reacting to my fear! I cry sometimes thinking of how much crap gets in the way of the most important things in life; my children, husband, health, etc. Everything that gets in the way of being in the moment and the best Mom I can be will not be remembered when my kids are grown and gone. I tear up even thinking about the time when my babies won't be my babies anymore. Time goes to fast and I don't want to miss another moment from stress, housework, whatever. When I am older and my kids grown with their own lives, I know I will just want this time back so much. I don't want anymore regret, I want to be happy with the life I lead and the decisions I make that determine what my priorities are day to day.
>
> I hope 2011 is filled with love, good health and peace within your hearts.
>
> xoxoxo
>
> L.C.

Wow, it has been over a month since my last post.   I feel like a broken record all summer apologizing for my infrequent posts.  I have been going through so much personally and have not wanted to deal with any of it.   I have been so depressed all summer which has yet to lift at all, the heat has been lingering in Florida and  I have avoided setting up an appointment with a neuro-psychologist which is a major step for me towards feeling better since he or she can put me on antidepressant and do further testing to find out why I am having sporadic auditory processing difficulties, brain fog, etc.   I am also having major issues seeing eye to eye with my rheumatologist and know I need to find another doctor who I have more confidence in.  For me, this is like breaking up with a boyfriend and I have been waffling about this for a while as the issues continue to grow proving to me that I have no choice. I need to start researching rheumatologists to make a change.  I also continue to be conflicted on whether to start MTX  and just can't decide what is best for me: coping with the pain - by any means possible - basically pain pills, ibuprofen occasionally,  and plaquenil which helps but not nearly as much as it did 5 years ago when I was first diagnosed.  For now I am combining plaquenil with atabrine, another antimalarial that they discontinued making commercially once plaquenil was released because atabrine has a tendency to cause people to turn yellow or jaundiced looking from normal everyday use of the medicine.  But would I rather be yellow and stay on the mildest form of medicine to treat lupus or go on MTX with the risks connected to it?  I know many lupies are on MTX and I know it has saved some people's lives and significantly improved quality of life for most lupies who take it.  I am not knocking it as an effective treatment for lupus but just questioning whether it is right for me or is it better to struggle through the pain and wait for Benlysta to hopefully be approved late 2010.  It is tough day after day waking up in pain, going to sleep in pain and usually waking up in the middle of the night due to the pain and then not be able to go to sleep for at least an hour until the pain meds sufficiently kick in.  It is physically and emotionally draining to go through this day after day.  Hopefully the atabrine will work.

And, in the meantime, there has been so much lupus news that I neglected to share.  So I am determined to catch you up on any important news but there might not be many personal posts for a while until I work out some of these issues and get out of this funk.  When I get depressed, I alienate myself from others and hibernate.  I don't want to be around anyone and I feel like I have nothing to contribute and worry I will bring others down.

Thanks again for the fantastic comments   It makes me so happy to read them every day and I can't tell you enough how much I appreciate all of the support.  You don't know how much it means to me to have a creative outlet and know that it touches your lives.  

xoxo

Lupus Celebrity

 

Hi all my friends, sorry for another 3 weeks since my last post.  The summer has been so brutal on me; I flare pretty constantly and have a good day now and then but not nearly enough of them.  I am counting the  weeks until fall and winter where it makes the Florida summer almost worth it.  I am sure in December I might say it is worth it but in the dredge of misery that is my summer, right now it feels like a lie.  I am depressed and feeling like a bad mother who hibernates with her kids while others are going to the beach, pool, playgrounds, etc. This is my normal MO each summer so I know I will survive it and it will feel so good to get out with them from October until whenever the heat becomes prohibitive again - usually May,.  So I have a really bad 6 months for a mild 6 months where the weather is perfect  me.  When it gets cold, I struggle much more with Raynauds and stiff joints getting out of bed in the morning but it is much better than the heat/sun problems.  But I know if I was up north where I was raised, I would have a much harder time with the cold since even Florida's mild winters affect me.

So back to the topic of this post!  I have always had a malar rash so to a certain extent I have always displayed my illness more than some other lupies can.  But I have been frustrated along with everyone else that has lupus that we don't necessarily look sick so therefore we can't BE sick in some people's minds. And in my experience almost 5 years into my diagnosis,. I am sick and in pain more often than not.  And it is a fight, every day I wake up in pain and have to fight to get out of bed, to take care of the kids, keep  the house somewhat clean and count the hours until I can take a nap and wonder how I am ever going to get through the day.  I have had rashes all over my arms, stomach and legs all summer but most of  the time people either can't see it, don't notice them or are too polite to talk about them.  What has changed is my joints in my feet and hands when I wake up and sporadic throughout the day are red in the joint areas where I have intense pain.  So now instead of just talking about how much pain I am in, my husband can look at my hands and feet and know.  So although I still would LOVE for him to walk in my shoes and feel my pain for even an hour (he would never last a day, lol), I think this visual is helping since my husband grimaces each morning as he looks at my red joints.  And since the redness does not make my hands or feet 2 hurt any worse, I welcome the change.  It is strangely comforting when I am in so much pain to see the angry red rash on my joints.  It motivates me to keep fghting, I will never give up!

xoxo,

Lupus Celebrity

Snoop Dogg and his daughter Cori have written a song they are releasing about lupus!  How awesome; I can't wait to hear it.  2010 is our year, my PALS (people affected by lupus).  Thank you Broadus Family more than I can tell you.  You are making a huge difference and using your celebrity to give back by giving a voice to our disease!  A lupus rap song?  Woohoo!  I am buying my first Snoop Dogg album once it is released  to give my support and hope everyone that can does the same.

xoxo

Lupus Celebrity

Snoop Dogg has credited his daughter Cori's battle with lupus with bringing the rapper closer to his wife Shante, insisting the life-threatening illness helped to save their faltering marriage. The rap superstar, real name Calvin Broadus, filed for divorce from his wife of seven years in 2004, citing irreconcilable differences.

The couple reunited months later, prompting Snoop to withdraw the legal petition, and they renewed their vows in 2008. Snoop admits the turning point in their relationship came when young Cori was diagnosed with the autoimmune disorder in 2005 - and her subsequent health battle made the hip-hop star and his wife realize they had to stay "together forever".

Shante tells People magazine, "Without (Snoop), I don't know what I'd have done. It's amazing how this all turned out. We were gonna get a divorce. But we wouldn't have gotten through it (the lupus diagnosis) that way." Snoop adds, "That's what it boiled down to. Cori's lupus showed us we need to be together forever."

The rapper reveals the couple had turned to a marriage counselor to help them overcome their troubles and he would often escape to the recording studio to cry and gather his emotions. He says, "You always think it's gonna happen to someone else. Some days in the studio, I'd just cry. It was the only zone I had to express myself."

But he's in awe of how strong Cori, now 11, has been throughout the health crisis - despite struggling with the side effects of the disorder, which caused her hair to fall out and affected her weight. Snoop explains, "My daughter is the love of my life. When she'd lay in bed saying, 'My brain hurts', it bothered me so much. I felt helpless... (But) she's the toughest little thing I've ever met, even with the needles."

And Cori has managed to keep her lupus under control to enjoy a normal childhood. Her proud father adds, "She's on the honor roll, playing volleyball and softball, living life. She has all this joy. In the beginning lupus was winning. But now Cori is."

WOW, what an inspiring story.  I am happy his daughter is doing well and I am sure the support and management of her health by her parents help.  I never liked Snoop Dogg that much back then when he acted like a pimp with women hanging on him.  But I started to like him after he revamped his image, started acting in cameo parts where he played himself in movies and watched his reality show with his family.  So in my opinion lupus did not only save his marriage but his career too!  Snoop's wife has just been appointed to the board of directors of Lupus LA .

"Lupus LA is thrilled to welcome Shante Broadus to our board. The commitment the Broadus family has made to the fight against lupus is critically important to the success of our organization and we know that they will have a huge impact on lupus awareness worldwide," says Lupus LA Chairman Adam Selkowitz.

Shante Broadus, wife of famed musician and entertainer Snoop Dogg, became devoted to the organization after their young daughter Cori was diagnosed with lupus. After discovering the disease is more prevalent among women of color, Shante realized the organization needed a voice and her family's celebrity status could help inform people of the disease that affects over 1.5 million Americans.

Since then, Shante and her family have been very involved in Lupus LA events and support groups, and in speaking with press outlets to help build awareness about lupus.

I hope that Snoop continues to use his celebrity to talk about lupus to help spread awareness. It would be incredible if Snoop could be as well known for lupus as he is for his pot use, lol.  Seriously, Snoop, we need your support.  It  is awesome your wife is actively involved, but you talking about lupus and supporting lupus will make much more press.  And I can't  think of anything better to honor your daughter than to give back by helping in the fight for a cure for lupus.  Your little girl and her sustained health is in my prayers.

xoxo,

Lupus Celebrity

SIMON COWELL's ex-girlfriend TERRI SEYMOUR has confirmed she was diagnosed with lupus as a teenager, insisting the life-threatening illness has made her "more aware" of her own "mortality".

Seymour has revealed she was struck down with the incurable condition at the age of 18, when she was at the beginning of her modeling career.

The 36 year old underwent treatment and is now "in remission", but admits the deadly illness has encouraged her to live life to the full.

She says, "When I was an 18-year-old model, I developed lupus, a disease where the body's own immune system attacks healthy cells and tissues."

"I was in terrible pain and had to be put on a cocktail of drugs. I have been in remission for years, but it's made me much more aware of my own mortality."

Pop star Lady Gaga revealed earlier this month (Jun10) that she tested "borderline positive" for lupus and is taking extra precautions to ensure she doesn't develop the condition.

I applaud Terri for going public with her lupus diagnosis.  This is such a brief article so I am very interested in learning when she went into remission and if she attributes it to any medicine, therapy, etc.  I am always so fascinated and filled with hope when I hear that others have gone into remission. 

I also wonder if she came forward due to Lady Gaga's admission in early June.  I think anyone in Hollywood who has lupus would be floored by all of the press Lady Gaga receives every time she mentions lupus.  Also, a majority of the public reaction was very positive and supportive.  Hopefully, this will result in more celebrities disclosing that they have lupus even if motivated only by gaining press coverage.  I used to believe that celebrities with lupus chose not to disclose this because then they would cost more to insure them on movie sets, etc.  But that doesn't make sense because I am sure the insurance companies require medical records for such large amounts of insurance so they wold know if a celebrity has lupus.  So the only thing I can think of is they are worried about discrimination; they fear they will not be hired if there is concern that they could get sick during filming, be too fatigued, etc.  But after such an outpouring of public support for Lady Gaga, I hope that Hollywood has become more accepting.  Lady Gaga has had such an impact on awareness of lupus; I would hope that others would want to do the same.   I believe everyone was put on this earth for a reason and if a celebrity gets lupus, they should use their celebrity to create more awareness, acceptance and support for lupus sufferers.

I hope Terri continues in healthy remission.  Hopefully she will follow Lady Gaga's lead and use her celebrity status to benefit lupus through charitable donations, interviews, etc.  I also hope she shares more in future interviews about her experience with lupus and details on her remission and what she attributes it too.

xoxo

Lupus Celebrity

I can't believe how long it has been since my last personal post. I have been struggling with depression and coping with my regular summer flares triggered by minimal amount of time when I cannot avoid going out in the sun and heat, even with SPF and protective clothing on.  A lot of my depression stems from the summer; I don't want to be a hermit again and I know reality is I have no choice.  Anytime from 10 - 6 in sunny Florida, if I am outside, I am miserable. The sun on my skin feels like my body is being poisoned from the outside in.  When I was on steroids, my malar rash was almost gone.  Now it is back with a vengeance.    Besides my malar rash, I have circular rashes along my jaw and rashes on my upper arms, forearms, and stomach (which is NEVER exposed to the sun).  I also had an allergic reaction to a sunless tanner I tried that I thought might make me feel a little better and instead I ended up with hives and was itchy all over for 2 weeks.  Here I thought it might brighten my mood to be less pale and instead I ended up more depressed from an itch that could not be satisfied.

The depression has been really tough and is the worst I remember ever having.  I need to get on a new antidepressant but since the ones my GP have proscribed have not worked, I am going to see a neuro psychiatrist to see what he or she would recommend.  The other reason I have to see a neuro psychiatrist is  because I have had the strangest thing happening to me.  I will be talking to someone or watching TV and I can see the person's lips moving but cannot hear anything they are saying.  It happened 2 times at my doctor's appointment yesterday.  It was so mortifying having to tell my doctor twice within about a half an hour that I could not hear anything he was saying.  I tried so hard and was so scared I could not control my brain.  My doctor seems to think it is a panic attack from the stress I am under but I am not sure.  I am stressed right now but not as much as I have been before and nothing like this has ever happened to me.  I looked up a condition called Auditory Processing Disorder which sounds a lot like what I have been experiencing.  The only difference is it happens when I am reading too.  It is so frustrating, I can read each word but my brain cannot string it together to form a sentence I can comprehend.  Instead I just read the words but they have no meaning since I cannot understand all the words together.  Anyone out there ever experience this?  The convenient part is that a neuro psychologist would diagnose and treat me for any auditory issues so I can take care of the depression and what is causing my processing problems at the same time.  If anyone suffers from anything similar, please comment and let me know.  I am very upset, frustrated and scared and it would be nice to hear from others who had similar problems.

Speaking of comments, your comments have been so great.  When I am at my deepest depression, I hide out and don't speak to anyone.  When I received comments during this time, it cheered me up so much.  I have wanted for so long to post but between having both boys home for summer vacation and being so bone dead tired by the time they go to sleep that I fall asleep right after them.  So thank you for all of your encouragement and for continuing to visit this site whether I post every day, every week or even not for 3 weeks.  Your support means so much to me and without your feedback, I would have quit doing this a while ago.  You are the best and thank you for keeping me going.

xoxo

Lupus Celebrity

In the July issue of Rolling Stone magazine, Lady Gaga talks lupus again.  See the excerpt below and my comments afterwards.

Earlier this month, Lady Gaga frightened fans when she revealed to Larry King that she had been tested for lupus and that results had shown she was "borderline positive" for the disease.

"Lupus is in my family and it's genetic, and it's funny, 'cause my mother told me the other day that my fans were quite worried about me, because I did talk about the fact that I was tested for lupus," Gaga told King. "And the truth is, I don't show any signs, any symptoms of lupus, but I have tested borderline positive for the disease. So as of right now, I don't have it. But I do have to take good care of myself."

And in the upcoming issue of Rolling Stone  magazine — which hits newsstands last Friday — Gaga expounds even further on her condition, telling writer Neil Strauss that she doesn't want her fans to worry about the disease and that she's already taking steps to ensure she'll remain healthy in the midst of her seemingly endless world tour.

"It's more making sure that I reduce stress in my life to make sure I don't develop [the disease]," she said. "I make much more of an effort now to minimize the drama or the stress. ... I take care of myself. I drink and still live my life, but I could never let my fans down. That would kill me to have to face that extra obstacle every day to get onstage. It's completely terrifying, so I'm just really focused on mind, body and soul."

Gaga also said that, though she's been tested for lupus, she's not interested in following doctor's orders when it comes to preventing the disease. Rather, since lupus is thought to be hereditary, she's sought the advice of her family on how to live.

"It's in my family, so I don't really listen to doctors very much when it comes to it, because it's so personal," she said. "I talk to people that I know that have it or my father, whose sister died from it. There's nothing to worry about, but I do get very tired sometimes, and I naturally wonder [about the disease]."

And to that end, Gaga admitted to Strauss that she does worry sometimes about the effect her schedule (and her fame) has on her health but that she continues to press on, no matter what those closest to her may be saying.

"I don't want to be [a hypochondriac], so most of the time, I'm like, 'F--- it, I'm fine,' " Gaga told Strauss. "At a certain point, you're so beyond the point of exhaustion that you don't know: Do I have a health problem that may or may not be real, or am I just really tired?"

Her comments about worrying she is being a hypochondriacreminded me of myself before I was diagnosed with lupus. I remember geting so disgusted because all the doctors would do was give me antibiotics.  So once it was announced that by using antibiotics you could develop a tolerance to them and they would no longer work when really needed for serious illnesses, I just stopped going to the doctor for my frequent illnesses.  I remember sometimes when  I had too much to drink I would get weepy and tell my closest friends that I was scared I was really sick.  But I would never talk about it afterwards and would continue to attribute my fatigue, muscle aches, and malaise on my stressful career.  I blamed my rashes and feeling sick from sun exposure to sensitive skin.  So I self medicated with whatever helped - tylenol, excedrin, vitamins, alcohol. etc. and avoided doctors unless I needed my thyroid checked and medicines renewed. 

 

I am really encouraged by Lady Gaga.  Less than a month after she first discussed her fear of having lupus, she has spoken about it to Larry King and Rolling Stone Magazine.  She also auctioned and donated the proceeds from her Poker Face video necklace to the LFA (Lupus Foundation of America).  Thank you Lady Gaga and please keep up the good work talking and raising funds for lupus.  We lupies need you!  I think from her announcements more people have become educated about lupus and hopefully more people will come out from hiding as Terri Seymour did 2 days ago.  I think more celebrities will be debating whether they should quit hiding after seeing how the news was consumed with Lady Gaga and lupus for over a week after her first announcement.  Lupus is nothing to be ashamed of and by sharing with the world that they suffer from this disease, they inspire other lupus patients to keep fighting and know they are not alone.  And the increased awareness means more money for lupus research & development so we have a better chance determining what causes this disease and how to cure it.  So thank you Lady Gaga and please keep talking and raising awareness.  We appreciate it so much and you single handedly can make so much difference.

 

xoxo

 

Lupus Celebrity

I know it has been 3 weeks since my last entry and I will post on that later but I had to write about the latest news on our Lady.  She announced yesterday she was auctioning off her necklace she wore while filming her video for her 'Poker Face' video to benefit the LFA (Lupus Founation of America).  WOW!!  My fellow PALS (people affected by Lupus), I think we have hit the jackpot in terms of a celebrity publicly supporting us.  As I mentioned in a previous post, Lady Gaga is a denmother for all the geeks, freaks and neglected; well if there ever was a disease to qualify in that category, lupus would.  I only need one sentence to prove my point.  No new lupus drugs have been developed in over 50 years.  Case closed, we are neglected.  But I am feeling so hopeful today to see lupus in the headlines for Gaga's auction to benefit us only  weeks afer her announcement she tested 'borderline positive' for lupus.  This is just fantastic; thank you Lady Gaga!  And please keep it up; you can truly change so much just by raising awareness.  Increased awareness leads to more charitable donations which then can be spent on research and development dedicated to finding a cure for this disease. 

The link to the auction is below.  It ends today and ANYONE can bid because it is a reverse auction on winnit.com where the lowest unique bid wins.  I had never heard of this site before and it is such a great concept letting all of us ordinary people who can't pay 100s or 1000s to bid on items and win for unbelievably low amounts!  It is so hard to describe but you will understand it quickly by reviewing how it works on winnit.com.  It is so in line with all I have read on Lady Gaga, she found a auction that would be accessible to everyone so not only the wealthy could bid on a celebrtiy collectible like usual.  Wow, how down to earth , our Lady has really impressed me again.  Click here  to go to the auction and don't delay if you want to show your support to the Lupus Foundation of Amercia and Lady Gaga.  The auction ends tomorrow, June 24th, at 8 pm.  I hope you can and show your support,  I am opening my account right now - wish me luck! 

More to come on my 3 week absence; I will try to post again really soon.

xoxo,

Lupus Celebrity

I have gotten behind on comments so rather than go in and respond to each one, I want to thank all of you that have left me feedback through this post.  Thank you so much for letting me know you are out there, reading my blog and my work researching and writing the posts are making a difference.  I appreciate it so much and need that feedback to continue to be motivated.  I smile at every comment I get; I am so happy to connect with any of you.

So thank you so much and please keep the feedback coming.  Although I don't respond to everyone, know that every single comment  made touches my heart.  I will keep posting and trying to make a difference if you keep telling me you are listening. 

It is not easy for me to write each post, I have been working on the Gaga most recent post begining at 8 am this morning when it could have been breaking news and I posted it at 11 pm my time.  Once the kids are up and I am expending all of my energy just trying to get through the day with my boys, I cannot dedicate the time needed to research, write and finish a post.  I must wait until everyone has gone to bed so I  can concentrate, uninterrupted.  Every post, no matter how many spelling mistakes and run-on sentences, are created with all of my time, energy, and strength I can muster at night after being a Mom all day so the feedback is crucial since this is not an easy job but one that I love so much.

Thanks again for all your support!

xoxo

Lupus Celebrity

Lady Gaga told Larry King tonight that she tests positive for borderline lupus.  What this probably means is she has a positive or close to positive ANA but does not have enough symptoms and other test results to justify a diagnosis.  For someone to be diagnosed with Lupus SLE  they must qualify by the criteria and process listed below.

American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

• Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
• Scaly rash, called a discoid rash, which appears as raised, scaly patches
• Sun-related rash, which appears after exposure to sunlight
• Mouth sores, which are usually painless
• Joint pain and swelling that occurs in two or more joints
• Swelling of the linings around the lungs or the heart
• Kidney disease
• A neurological disorder, such as seizures or psychosis
• Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
• Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
• Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

What does borderline positive lupus mean?  Probably Lady Gaga was referring to her ANA test.  All tests have a normal range of values. If a test value is at the upper limit of the normal range or slightly over, it's often referred to as "borderline." The importance of a borderline ANA test depends on the other criteria that are present. A borderline positive ANA will probably be ignored by the doctor if there are only one or two other criteria suggesting lupus, yet could clinch the diagnosis if there are already three or four positive criteria.   Gaga told Larry King that she does not have any symptoms of lupus so the borderline ANA would not be significant at this time.  Even if the ANA was a high positive, that does not mean she would automatically have lupus.  Some people have a positive ANA who never develop lupus.  That is why it is only one of the eleven criteria listed above. 

Well, I am glad that she spoke about it and clarified her testing since lupus has been consumed with all things Gaga this past week.  I have never seen anything like that before,  seriously at least 95% of all lupus news last week was related to Lady Gaga.  Hopefully she will still be a voice for lupus in memory of her aunt and continue to take good care of herself if she or her doctors are concerned ithat lupus could be an issue in her future.  I am glad that I got to know your music more this past week as I fantasized how you could change the face of lupus as our lupus celebrity.  I know in this lupie, you have a new fan.

xoxo

Lupus Celebrity

                                                                                                                                                                                        

Wow, Lady Gaga was interviewed for the UK Times Online and here are the highlights of her conversation on her health and lupus.  After the highlights, basically I have the whole section discussing her health, I share some of my thoughts;

So last night I feel asleep on the couch and my oldest son woke up about midnight.  I was laying on my side and he climbed on top of me and laid on my side and fell back asleep.  What a beautiful feeling that was, my six year old curled up on me like when he was in my belly, both of us our breathing in synch, sleeping together so peaceful.  I know I won't have these kind of moments for much longer with him and I know it will never be long enough and that once it is gone, I will yearn for those lost times.  I constantly remind myself to enjoy each moment and just be in it.  My boys are growing up before my eyes and I need to cherish these times.  My oldest just got a math certificate for math achievement in kindergarten.  It makes me so happy that he is doing so well and his report cards say he is attentive and enthusiastic to learn.  I am so proud of him. I could talk about my boys all day, I love them both so much.  My little guy is in the stage of running hugs; I just love watching his joyous face and smile as he runs across the floor and into my open arms  It is the best feeling to hold my boys in hugs and I worry already sometimes about the day that ends, but that is why I keep trying to live in the moment with them.  Okay, back to my morning.

So about 5 minutes into our snuggling, my body started to hurt from the pressure of my son on me but I held out for a while because I loved laying so close to him but finally the pain greatly outweighed the pleasure so I told him let's go lay in your bed.  When he wakes up in the middle of the night that is what he wants; Mommy to sleep with him.  Well, I neglected to  take my late night mats - my pain med, my restless leg med, and a muscle relaxant. So after writhing in bed from the pain for about an hour, I got up at 6 and took my meds which have yet to kick in and it is almost 8.  Time to take my 2nd oxycodone, I try to take them as far apart as possible to avoid the zonked feeling I get when I take a 2nd oxy any time before 2 hours after my last pill..

The pain is similar to my daily restless leg painful aches but the ache is all over my body.  My spine hurts from my neck to my tailbone with tingling, pins and needles and my RLS ache takes over from my hips down to the tips of my toes which are numb and tingling.  Besides the spine pain, there is a constant, stinging pain to the right of my spine.  My hands and fingers are okay right now just stiff but if you told me you could cut off my feet and I would never have this pain in them again, I would be so tempted.  And my mind is just scattered, consumed by the pain.  I get distracted from it for a few seconds as I type but the pain is throbbing and aching in the background, not letting my mind go.  My feet are still writhing in pain as i sit in weird positions, my feet contorted trying in vain to find a better position to stop the pain. 

The 2nd oxy begins to kick in after only about 10 minutes and I finally start to feel some relief; the all over pain stops and now what remains is  my normal, constant pain in my feet, hands,and  sporadic neck, spine and back pain.  All of my pain is a bit duller except my feet and when I stand, my legs are stiff and weak as usual but the pain is finally at a manageable level.  Thank you God, relief has arrived.  This is my typical pain every morning until my first dose of meds kick in but it is usually less intense, especially since most nights I wake up to take another oxy. between 2 - 6 am.  Regardless though the pain is still bad enough every morning that I have to wait at least a half hour before doing anything,  How nice it would be to wake up without any pain one morning.  When I open my eyes and am alert, the pain just bombardes me and I limp to the bathroom to take my meds and  the countdown begins for them to kick in.  It would be so great to not feel that way every morning but I know that I have it easy compared to others out there.  I also have a husband who takes the morning shift feeding and taking care of the boys until I can walk around but I always hear about it and he cannot understand how hard it is for me or he wouldn't be so resentful about it.  Whatever, I do all I can do for the kids all day long once my meds kick in so if he is angry that he needs to handle them alone for a half hour, that is his problem.  He just came in yelling so now after finally getting the pain under control, I am angry with him.  It is all ever ask of him, to cover the mornings feeding the kids pancakes or cereal.  By the time that is over, I can usually function.  Alright, enough venting about that. I think we probably all feel that way a lot that no one can fully understand what we go through except each other.

Well, I better go relieve him now from such a difficult morning feeding our kids   Hope your day started better than mine and I will write again soon.  2 days in a row - WOW.

xoxo

Lupus Celebrity

In January of this year, I picked my #1 choice for a potential lupus celebrity spokesperson and chose Seal.  I was a little hesitant because he has been so private about having lupus but he started to disclose it in late 2009 in interviews so I hoped I made a good choice for my first celebrity pick. I wrote in the original entry;

So Seal, you are my #1 celebrity pick.  I hope you live up to this honor and start stepping up more for lupus.  We lupies need you!

Well, I am so proud of our man!  He was at a concert in November in Australia and, well, read on for a wonderful article  by Erin-Louise Povey, a fellow lupie and activist;

When my local lupus organization posted Seal concert tickets on their facebook site to be auctioned, I made sure I was the highest bidder.  I had plans of making a statement at the concert even before I'd even won them. Two weeks later, I received the email to say I was the highest bidder.   I was so excited.  I was going to LA the following week so I could only make it to the first concert held at Sydney’s  State Theatre.  Even though I would have usually dressed up, or worn a nice dress, I decided that I would get noticed a lot more if I was wearing orange - a colour along with purple, associated with lupus.

I was running late for the concert, but that didn’t stop me. I called into a store on the way and bought some orange satin and a few permanent marking pens. At a pizza shop, and right there at the table I made my sign that read, ‘Life without lupus’ in big black text and then it was a mad dash to the city for the concert.

I didn’t have time to do my hair so I tore a side of the satin sign off and wore it as a head scarf and did my makeup on the way.  We found parking and walked  to the theatre. I was excited to be there.  While we were inline waiting to collect the tickets, I could see people looking at me, reading my lupus shirt.  That’s what I wanted, so I could put the word lupus in people’s minds.

When Seal came out it was excellent. We were sitting in the 4^th row, and although we were in the light, I wasn’t sure if he could see me.  But we made eye contact and he gave me a smile and that was enough for me. The first few songs were quiet, so I was nervous to hold up my sign, so I wore it on my shoulders like a superman cape and sat forward so that people could see it from behind. 

As the night progressed and people started dancing in the aisles, I thought, 'Ok, now's my chance.'  I made my way to the front of the stage and was shaking the sign behind my head.  As Seal came over to my side of the stage, I held it up to him so he could read it, and he took it from me.  I couldn’t believe it!  He was holding it up while he was singing and then when the song finished, he held it up again and gave a shout-out for lupus.  He said that lupus is an interesting disease and that he'd suffered from lupus for the past two and a half decades.  He then turned to me and asked my name.  I timidly replied,"Erin"  He thanked me for being there  and danced around with the sign tucked in his back pocket.

The music stopped and it was time for the encore.  The whole crowd was clapping and cheering. Seal came back on stage, walked to the centre and said,  "This song is very special to me and I feel it only appropriate to dedicate this song to you Erin."  He reached out holding my hand and starting singing. 

I used to see people on TV crying at concerts and thinking that? Why would you cry?  Suddenly uncontrollable tears of joy streamed down my face. 

After the concert finished and people were leaving, I was invited backstage to meet with Seal.  He thanked me again and we chatted a little, took some photos then he had to go.  My actions were pre-meditated.  I wanted people to think about lupus.  And I thought what better opportunity and place to do it - at a concert of a high profile celebrity such as Seal, whom many people don’t realize has lupus. 

Although It was my plan I could never of imagined it turning out the way it did.  It was unbelievable when Seal thanked me and reached out holding my hand dedicating the last song of the night to me!!!!!! No words could describe how I felt, and I still get tingles talking about it.  It's absolutely by far the best moment I've had since being touched by lupus - and a story I'm happy to share to spread the word.


Congratulations Erin for spreading the word about lupus in such a public way.  Check out her great lupus video below  my post from YouTube - click the link to my YouTube channel and it is the only one right now in my favorites.  Sorry for the extra step but to put youtube on my site, I need to pay more each month.  I am working on getting advertisements on the site so I can hopefully afford to pay the monthly fee for better services.   So for now, bear with me! 

 Seal, absolutely amazing, you are making the lupus community so proud.  Please keep up the great work and use your publicity for spreading awareness.

Sorry I haven't been on for over a week - a combination of a flare and depression.  I don't know if the depression is due to the steadily warming weather in Florida and not wanting to hibernate in this house all summer like I must.  I have been fighting the depression all winter though so I don't know; it is probably a combination of a lot of things.  I am sure everybody out there could write a book on our lives and how depressing it is when we are in the right -or wrong- frame of mind.  Well, more to come soon, hope you were missing me too.


xoxo

Lupus Celebrity   


TO CHECK OUT ERIN'S GREAT LUPUS VIDEO, TO CATCH  CURE, CLICK HERE

http://www.youtube.com/user/lupuscelebrity

The Lupus Foundation of America's promotion for May Lupus Awareness is Band Together for Lupus.  See the LFA announcement below and please click here  to sign the petition and lend your support to lupus awareness.  You DO make a difference so please sign it today.

xoxo

Lupus Celebrity

p.s. - You must have a Facebook account to sign the petition.  If you do not have a Facebook account, click here to go to the LFA website and support the cause by sending e-cards to your family and friends.  Or you can do both like I did to get the message out to my family and friends who are not on Facebook.

About this Petition:

During Lupus Awareness Month in May, the Lupus Foundation of America (LFA) wants to know -- Are you in the band? We hope you’ll join us and Band Together for Lupus™ to raise awareness and educate others about lupus. It’s estimated that 80 percent of the public know little or nothing about lupus. Together, we can change that, but we can’t do it alone. Just think of the impact we can make if we all did one thing to raise awareness of lupus.

During Lupus Awareness Month in May, the Lupus Foundation of America (LFA) wants to know -- Are you in the band? We hope you’ll join us and Band Together for Lupus™ to raise awareness and educate others about lupus. It’s estimated that 80 percent of the public know little or nothing about lupus. Together, we can change that, but we can’t do it alone. Just think of the impact we can make if we all did one thing to raise awareness of lupus. (show less)

The Desired Outcome of this Petition:

Better awareness of lupus in the general public. One of the easiest and most visible ways you can help achieve this outcome is by wearing your purple wristband, not only during Lupus Awareness Month, but also throughout the year. Other simple things you can do include sharing the LFA’s lupus fact of the day on Facebook or Twitter, or sending an awareness ecard to friends and family.

It might seem small, but if you sign this petition, we can Band Together for Lupus and raise… (read more)

Better awareness of lupus in the general public. One of the easiest and most visible ways you can help achieve this outcome is by wearing your purple wristband, not only during Lupus Awareness Month, but also throughout the year. Other simple things you can do include sharing the LFA’s lupus fact of the day on Facebook or Twitter, or sending an awareness ecard to friends and family.

It might seem small, but if you sign this petition, we can Band Together for Lupus and raise awareness of this life-altering disease

Happy Lupus Awareness month to all of my PALS - people affected by Lupus.  At least here on the east coast, it is officially May 1st. How can we spread awareness this month ?  I will continue to try to make a difference with this blog but I know I need to do more this month and I have been thinking what I can do locally to help raise awareness.  Any ideas ?   I welcome any feedback.  Below is the LFA announcement on this important month and some ideas for creating more awareness.   The LFA  asks that anyone with a connection to lupus inform at least 10 people about the disease.  If you have any additional plans, please share in comments.  As the LFA promotes, let's BAND TOGETHER For Lupus to create more awareness, support and donations for research.

I am also going to make this a topic on the forum so you can leave your plans or ideas there if you prefer .

LFA Article;

It’s estimated that 80 percent of the public know little or nothing about lupus. A shocking statistic when you consider the impact lupus has on the lives of 1.5 million Americans and more than five million people worldwide. We hope you’ll join us and Band Together for Lupus to raise awareness and educate others about lupus this May during Lupus Awareness Month.  More education and awareness of lupus can lead to earlier diagnosis, more resources to help those affected by lupus, and more dollars to fund lupus research. But we can’t do it alone; that’s why we need to work together. Just think of the impact we could make if everyone with a connection to lupus informed 10 people about the disease! Are you in the band?

LFA also has a page with preprinted emails you can send to people this month or on May this which is World Lupus Day.  You can click here  to access this LFA page.

Sweet Dreams,

xoxo

Lupus Celebrity

Rob Thomas, lead singer for Matchbox 20, has recorded a song about autoimmune diseases called "Her Diamonds."  His wife suffers from a lupus like condition.  I am not sure what that could be besides APS.  Some reports says she HAS lupus but I can't find it confirmed by anyone officially.  It is a beautiful song and if you enjoy it, please buy it on iTunes so we show their is a market for these songs.  Any celebrity exposure is good for our cause.  To check  out the video for free on You Tube, click here .                                                                                                                                                                                                                                                                                                                          
I read one comment that I think hit the nail on the head about what the video means; 

What i get from this video is that there is a girl; she is crying over something that she knows that she cant change, but she cries anyways. She feels like nothing will get any better and she cant win; she's tired of crying though, but she dont know what to do to fix it. When she breaks out of the ice it signifies she is done crying; she cant take it no more; and realizes there is a chance. And the sun shining through the window signifies hope for a better day. 

Wow, that is very insightful and makes the video even deeper in meaning.  I haven't broken through my ice yet by any means but I hope I am melting a little bit.  I am so ready to be free of the pain, anger and sadness over having such an alienating, incurable disease.  Thanks Rob and I hope you continue to use your celebrity to put a spotlight on lupus and other autoimmune diseases.  
 
Song Lyrics:

Oh what the hell she said
I just can't win for losing
And she lays back down

Man there's so many times
I don't know what I'm doing
Like I don't know now

By the light of the moon
She rubs her eyes
Says it's funny how the night
Can make you blind
I can just imagine

And I don't know what I'm supposed to do
But if she feels bad then I do too
So I let her be

And she says ooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can't help her now

She's down in it
She tried her best but now she can't win it
Hard to see them on the ground
Her diamonds falling down, way down

She sits down and stares into the distance
And it takes all night
And I know i could break her concentration
But it don't feel right

So by the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there's something less about her

And I don't know what I'm supposed to do
So I sit down and I cry too
But don't let her see

And she says ooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can't help her now

She's down in it
She tried her best but now she can't win it
Hard to see them on the ground
Her diamonds falling down

She shuts out the night
Tries to close her eyes
If she can find daylight
She'll be alright
She'll be alright
Just not tonight

And she says ooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can't help her now

She's down in it
She tried her best but now she can't win it
Hard to see them on the ground
Her diamonds falling down

I can't take no more
Diamonds on the floor
No more, no more, no more
Diamonds falling down

I can't take no more
Diamonds on the floor
No more, no more, no more
Diamonds falling down

I can't take no more
Diamonds on the floor
(No more, no more)
Her diamonds falling, all her diamonds
Diamonds falling down

I can't take these diamonds falling down.

Sorry I haven't written in a while.  I had to do some traveling for a family event which was as dysfunctional a trip as ever.  It seems whenever I visit, I fight with my family and vow never to return.  For some strange reason, whenever I am visiting them, they are consumed with other things and offer me no support with the kids.  My husband started a business from home about a year ago because I couldn't handle the kids on my own day after day and I have grown to rely on him so much. So when visiting them with no husband, sleeping in the same room with both of my sons, and with a 21 month old in a non-baby proof house with medicines, knives, etc in drawers he can reach plus 2 staircases completely open and fancy china and other collectibles, keepsakes on bottom shelves, I spent all of my days standing up, walking around behind him so he wouldn't get injured or break anything.  I had them 24 hours a day with no relief.  At home, my house is baby proof so if I am having a really bad day, I can lock all the bathroom and bedroom doors and he can play anywhere with no issue while I rest on the couch.  By the time I got home, I was so depressed.  I am not happy at home because the weather is getting warmer and soon it will be too hot for me to go outside anymore.  That is so depressing to me when I have to hibernate.  But, I am not happy in the state where I grew up and my parents still live, either.  I am just not happy anywhere and that thought is getting me more depressed.  Whenever I am depressed, I isolate, hence, no posts.  I feel like talking about it just makes other people down and I don't want to do that.  And I am feeling sorry for myself which I despise because so many people are suffering much more than I am and I always feel I need to be grateful and not wallow in self pity.  I just hate how isolating this disease is.  I was talking to my primary care physician, or PCP, this week and he said I am severely depressed even on my anti-depressant.  I told him how alienating it is to not be able to go into the sun, take my kids to the playground, in the pool, etc for about 8 or 9 months every year.  His response was what if I was paralyzed from a car accident and couldn't go swimming, would you feel guilty?  I couldn't think of an appropriate response but soon after I thought of one.  The difference is the person in the wheelchair looks handicap and I do not.  So people will forget and invite me to the beach or to a outdoor play date and I have to decline and explain that I am basically allergic to the sun.  It is difficult living in Florida with so many sun worshipers celebrating the warm weather while I hate it.

Then I had a friend today ask me how long I would get social security and I explained I will be reviewed  in 3 years.  I just felt like I had to defend myself but I fought the urge to do so. I don't have to justify myself to anyone.  I am in CONSTANT pain from the moment I wake up until I go to bed and I am still awoken through the night by excrucating pain.  In the morning, the pain wakes me up anywhere from 4 am to 7 am.  But I try not to complain too much and focus on the good things in my life.  It might have been my sensitivity, but I felt like saying, do you know Rob has to forego a paying, steady job with insurance, 401k, etc. to help me because I can't even manage my kids day to day.  The pain makes me emotional, sad, and too often angry.  I can't even fathom having a job.  With  my old one,   I was so stressed, overworked, and I got almost every cold that I was exposed to because my immune system was so weak.  I don't know what I would do if I had to work, on a good day I get out of bed to get a pill and then can go back to sleep.  On a bad day,which right now is most days, I wake up and stay up whether it is 4 am or 7 am because the pain is too great.  The conversation just stressed me out because I make a conscious effort to not talk about my health all the time so I am not a broken record, self absorbed and besides it doesn't do any good most of the time.  For people that don't understand lupus,  I cannot help them other than through this blog. My memory is so poor now and whenever I talk about my constant pain, I cry.  And I don't like to cry around anyone.  I usually isolate when I am emotional or depressed.  I am not comfortable exposing myself when I am so vulnerable.  Hence, no posts this week!   But I continue trying to get better at posting so hopefully I will be posting more frequently.  See, I can't even handle posting on this blog consistently, what would I ever do if I had a full time job again?  There is no way at this point in my life I could handle any type of work.   With my sensitivity to the sun / uv / fluorescent lighting, my overwhelming fatigue, my muscle aches, my herniated  disks in my neck and now probably back, malaise, depression and zero tolerance for stress, I can't imagine having to work anywhere without my health declining even further.

If anyone is on an anti-depressant that works wonders, please comment with the medicine name.  It is time I switch anti-depressants I think and try to find a good one to assist me through the depressing summertime. 

Sorry for the ranting and complaining post but it does help to get it out of my head and on paper.

Oh, also thanks to all of you who became fans of mine on Facebook.  If you haven't become a fan, please lend your support and click here for my page or just search Lupus Celebrity once you sign on Facebook. 

xoxo

Lupus Celebrity



 

On the forum I visit regularly, someone brought up that their doctor wanted her to try reducing her plaquenil from 400 mg. to 200 mg. I was not sure why he would do that but when I viewed the FDA data for clarification, I found some other surprises like it is highly toxic and can be fatal  for children who ingest even small doses.  This has never been discussed with me by any of my doctors and I have 2 young boys at home.  If you are like me taking 18 pillsevery day not including my daily pain pills, you sometimes drop one or it falls down the sink.  Now that I know how toxic it is, i will just be that much more careful going forward.  And if I ever do drop one, it will have to be found before the kids can be in our bathroom, no exceptions.  I am not worried about my 6 year old, but my 20 month son puts everything in his mouth so if he saw it, he would eat it.

You can read the whole write-up below or just go to the bold sections to see what information was news to me.  And I also found the answer to our original question of why a doctor would cut dosage by 50 percent.   Yes, the FDA write-up directs doctors to cut the dosage after it has started working usually between 1 to 3 months although in my experience it was at least 6 months until I started feeling a noticeable difference in my pain levels . The reason they want us  to attempt to reduce it is, at higher dosages, the risk of side effects is much greater.  But a theraputic dosage long term is defined as 200 to 400 mg. so if like me you need 400 to notice any improvement, we should be okay but nothing higher than 400 mg long term is ever advised.

This just reinforces that we need to be our own advocate and research treatment options and risks for ourselves and not trust our doctors implicitly.

Sweet dreams,

xoxo

Lupus Celebrity

;

This report is a little depressing but it is important that we know realistically where scientists and pharmaceutical companies stand on lupus drug development.  It is a long article but make sure you read the section towards the end about  B cells and how they are learning more how they can impact lupus.  As I understand, Benlysta, ONCE approved -  it has to be approved - will only suppress the B cells, not your whole body like immunosuppressants do.  I marked the 2 sections below in BOLD in case you can't get through the whole article, at least read more on B cells and Benlysta so you understand some of the current research.


xoxo

Lupus Celebrity

At a teleconference in February sponsored by the Lupus Research Institute (LRI), researchers expressed cautious optimism about developing drugs for systemic lupus erythematosus (SLE) because basic research is uncovering new details underlying the complexity of the disease. Clinical development success, however, continues to evade companies.

Conference participants noted that at least until very recently lupus was handled like an orphan disease, with the pharmaceutical industry largely ignoring it because of its perceived rarity and the fear of not recouping drug development costs. More Americans are diagnosed with lupus, they said, than with cerebral palsy, multiple sclerosis, sickle cell anemia, cystic fibrosis, or AIDS; about 1.5 million individuals in the U.S. have the disease.

But as recent history continues to demonstrate, pharma’s reluctance to dive into the murky development waters of antilupus drugs remains well-founded despite the market opportunity. The odds against successful development of a therapy for lupus remain high, with only Human Genome Sciences and GlaxoSmithKline’s (GSK) Benlysta showing Phase III success.

Current treatments for lupus vary depending on the extent of the disease and may change over time. Some medications used to ease symptoms include nonsteroidal anti-inflammatory drugs, antimalarials, corticosteroids, and immunosuppressive medications. “Today, we do have therapies that work,” remarked Lee Simon, M.D., an associate clinical professor of medicine at Harvard Medical School. “In the 1950s, 95 percent of people were dead within five years of diagnosis. Today, 95 percent of patients survive five years out. But the treatments we have carry a heavy toxic burden. So, we need new drugs that work as well, if not better, with less harsh side effects.”

Predicted Successes that Failed

In a 2006 report, Decision Resources said that Roche and Aspreva's CellCept and Biogen Idec and Genentech’s Rituxan would emerge as “the leading therapies for the treatment of SLE, driving the market to more than quadruple from $300 million in 2005 to $1.3 billion in 2015.” The report further said that “Although corticosteroids and antimalarials will continue to be used as mainstay treatments for the disease, their major market sales will be dwarfed by the increased use and resulting sales of novel agents including CellCept and high-priced biologics including Rituxan and Human Genome Science/GlaxoSmithKline's LymphoStat-B.” LymphoStat-B is now known as Benlysta.

These predictions haven’t exactly panned out. Roche and Aspreva discontinued CellCept development in 2007, because the drug was unable to demonstrate superiority to intravenous cyclophosphamide. About a year later, Genentech, now part of Roche, and Biogen Idec reported that Rituxan failed to meet its primary and secondary endpoints in SLE. In 2009, the companies announced that Rituxan also did not significantly reduce disease activity in patients with lupus nephritis, which is an inflammation of the kidney and a complication of SLE. This March also saw a lupus trial failure from Roche and Biogen Idec’s Ocrelizumab, another anti-CD20 mAb like Rituxan.

Nearest Shot on Goal

The only remaining SLE contender cited in the 2006 Decision Resources report is Benlysta. This mAb, which belongs to a new class of drugs called BLyS-specific inhibitors, recognizes and blocks the biological activity of B-lymphocyte stimulator, or BLyS, a naturally occurring protein that was discovered by Human Genome Sciences. Elevated levels of BLyS prolong the survival of B cells, which can contribute to the production of autoantibodies like anti-dsDNA antibodies that target the body’s own tissues. 

Benlysta successfully met its primary endpoint in two Phase III trials in patients with abnormal levels of anti-dsDNA antibodies at the time of trial enrollment. If approved, Benlysta will become the first new therapeutic approved for SLE in about 50 years. According to Lazard Capital Markets analyst Terence Flynn, global sales could reach $3 billion by 2014. 

Basic Research on B Cells in Lupus

Future clinical successes in SLE may be related to the development of more drugs aimed at treating molecular characteristics that are more specifically related to the disease. “I think one of the reasons that there is a measure of excitement in lupus and in other complex diseases that we've been confronted with for a long time is the advent of a whole series of new molecular tools that allow us to address basic issues,” commented Salk Institute neurobiology professor Greg E. Lemke, Ph.D.

For example, Petar Lenert, M.D., Ph.D., and colleagues, authors of a 2009 paper published in Arthritis Research and Therapy, said that more selective approaches to weeding out B cells that promote lupus may be better than nonselective B-cell depletion. Autoreactive B cells produce the autoantibodies characteristic of lupus but also contribute to disease pathogenesis by presenting autoantigens to T cells and secreting proinflammatory cytokines.

Dr. Lenert and other scientists have shown that intracellular nucleic acid sensing receptors that function in innate immunity, like toll-like receptor (TLR) 7 and TLR9, may play an important role in SLE. Dual engagement of rheumatoid factor-specific AM14 B cells through the B-cell receptor and TLR7/9 results in proliferation of autoimmune B cells. Therefore, Dr. Lenert explained, strategies that preferentially block innate immune activation through TLRs in autoimmune B cells may be preferred over nonselective B-cell depletion. 

Dr. Lenert’s group found that a certain type of double-stranded DNA-like molecule that carries autoimmune-inhibitory sequences could selectively reduce the activity of autoreactive B cells and dendritic cells. When given to mice with lupus, the compounds delayed death and reduced kidney damage. The authors concluded that use of this specific class of nucleotides could result in a new approach to autoimmune disease therapeutics. Dr. Lenert was more circumspect in a conversation with GEN about the role of TLRs in autoimmunity. “It’s an area that requires much more research,” he said.

The search for and development of a lupus drug that induced tolerance in B cells directed against double-stranded DNA by cross-linking surface antibodies, however, proved to be La Jolla Pharmaceuticals’ undoing. The firm had to discontinue development of Riquent in February 2009 after it failed in lupus nephritis. La Jolla was delisted from NASDAQ this March, and Adamis Pharmaceuticals terminated its proposed merger with the firm; Riquent was La Jolla's only clinical-stage drug. 

Dr. Lenert’s concerns that the field requires further research remains the defining characteristic of current drug development efforts for SLE. Perhaps the Phase III success of Benlysta will encourage companies to keep on trying against tough odds.

I love Dr Oz almost as much as Oprah.  He describes things so clearly in the most basic terms and takes the fear out of things for me.  As I mentioned in an earlier post, I would love to get a complete health analysis from him where they run any and every test imaginable to find out what is ailing you,  And since women with lupus age 35 to 44 are 50 times more likely to be diagnosed with myocardial ischemia, it would be great to see a cardiologist of Dr Oz's caliber meet with a lupus patient and explain what concerns, symptoms, etc. are red flags to call your doctor asap and for him to explain ways in which  we have some control over heart inflammation. 

Myocardial ischemia is an intermediate condition in coronary artery disease during which the heart tissue is slowly or suddenly starved of oxygen and other nutrients. Eventually, the affected heart tissue will die. When blood flow is completely blocked to the heart, ischemia can lead to a heart attack. Ischemia can be silent or symptomatic.

Dr. Oz has the potential to put a spotlight on lupus and I applaud him for already having the topic lupus and men on his new show.  I read this great article by him that I wanted to share with you.  Hopefully that is the last post of the night and I will get some sleep instead of the horrible insomnia I have been plagued with again.  It is almost 2 and I am wide awake.  I know it is stress but with lupus, besides avoiding the sun, sleep is one of the most restorative things I need and when my body gets thrown off from lack of sleep, the insomnia usually leads to a flare.

I am hurting anyway but it always seems like it can get a little worse, doesn't it?  Well here is an article to cheer us up and give us some hope.  My favorites are #4 and #9.  It is so great that he appreciates educated, questioning patients which we know is hard to find a lot of the time in other doctors.  Thanks Dr Oz and please contact me if interested in a volunteer to be a guinea pig for anything if there is even the possibility it could have long term benefits and help me have some pain free days.   I haven't had one of those since my son was born 20 months ago.  because I trust you. OK, I must be getting tired because now I am actually addressing DR Oz and believing he will read and respond to this blog--  lol. 

Sweet Dreams,

xoxo

Lupus Celebrity



WHAT DR. OZ KNOWS FOR SURE

I read a really great article yesterday about a recent study that explains why lupus is more common in people of African and/or Asian descent.  I have copied the article below which was the simplest recap I could find that seemed to report just the facts and not opinion.  

I get so excited when scientists learn something definitive about lupus or at least they are making great strides in proving a theory.  Then it will be possible to get answers to some of the many questions we all have about this disease - scientists, doctors and patients alike.  The more they learn, the more targeted our treatments can become and it brings us closer to a cure.

Sweet Dreams,

 xoxo Lupus Celebrity

Gene That Protects Against Malaria May Increase Lupus Susceptibility

WASHINGTON, DC -- April 13, 2010 -- A gene variant suspected of helping protect people of Asian and African descent from malaria may increase their susceptibility to lupus, according to a study published Proceedings of the National Academy of Sciences.

The study was led by Kenneth Smith, Cambridge Institute for Medical Research and Department of Medicine, University of Cambridge School of Clinical Medicine, Addenbrooke's Hospital, Cambridge, United Kingdom.

For the study, Dr. Smith and colleagues genotyped nearly 5,000 patients with lupus and malaria from Kenya, Hong Kong, and the United Kingdom.

The researchers searched and tested patients' DNA for a FCGR2B gene variant known to be more common in Asians and sub-Saharan Africans.

Previous studies had linked a polymorphism of the gene to an immune system response that may enhance lupus susceptibility and malaria resistance.

The researchers report that the FCGR2B polymorphism appeared more frequently in patients with lupus who were from Hong Kong than in controls,
 and less frequently in Kenyan children with severe malaria compared with Kenyan children in the general population.

The results are consistent with well-established observations that lupus is more prevalent in people of Asian and African descent than in Caucasians, and may support the authors' theory that malaria's high mortality rate could be driving an increased susceptibility to autoimmune disease in specific ethnic groups.


SOURCE: Proceedings of the National Academy of Sciences

 

I was watching an old episode on Oprah today; I love Oprah's show so much.  I always had a dream to write a novel and it be so wonderful that she has me on her show even before she started the Book Selection Club.  Well, I still haven't got around to that novel, so I dreamnt of going on the show to promote lupus awareness and become a volunteer guinea pig of Dr Oz's  where they would run every blood and other test possible that seems to determine anything and everything wrong with participants. I think every lupus patient deserves that type of testing after diagnosis.  But anyway, tthat is another night's topic, I am not digressing tonight.  Unfortunately at this point the blog is not getting nearly enough attention for Oprah to notice it, haha.  So, I have a long list of reasons why it can't happen but it is still my goal despite all of the reasons.  But since my timing is short now, the most important message and how I could impact the majority of her audience now would be to discuss the danger of high risk pregnancies and my experience with the delivery of my second son that I call my miracle boy.   I came very close to dying during the c-section but I was lucky enough to have a great OB doctor who saved my life by suggesting an operation that did not come up on google, so new because it had only been done in University hospitals.  The surgery saved my life while rich, poor, young, old, and women of every ethnicity are dying needlessly every day because they do not know about this surgery.  The surgery is called internal iliac artery balloon occlusion.   Now my story;

I had to stay in the hospital on bedrest for 6 weeks before the birth of my son.  I had complete placenta previa throughout the pregnancy where the placenta is underneath the sac where the baby lives blocking the baby from being delivered.  If this had been 50 years ago, the doctor would have had no idea of it until delivery and in all likelyhood both my son and I would have died. But my OB was made aware of my placenta previa at week 5 during my first ultrasound. Having lupus, I was automatically labeled as a high risk pregnancy and had dozens of ultrasounds throughout the pregnancy.  Usually the placenta previa fixes itself but from the get go my baby implanted so low and the placenta never budged. Once my OB determined it was not going to move, he met with the hospital's chief radiologist and he agreed to perform his first internal iliac artery balloon occlusion procedure with a pregnant woman.  I stayed awake during the procedure which is usually discouraged but I knew if I went under, he would go under too and be asleep at delivery.  In the operation, they had an xray machine watching the baby while they heloped me.  In the roin area where he implanted balloons that were inflat.during the c-section to help prevent hemhoraghing.  The balloons, once inflated, would press up against the blood vessels of my uterus to help slow the bleeding down.  I still hemorhagged , lost a lot of my blood and  my uterus and one ovary were attached to the placenta and were lost too.  But most importantly, I was wheeled out of the hospital  days later with my baby boy in my arms.

The surgery had primarily been done in university hospitals and it was the first time it was done at the hospital where I delivered.  Thank goodness my doctor was innovative and not afraid to try new things.  He told me flat out that had it not been for the balloons, he would not have died.  The loss of my uterus was a tough loss that I really feel I have gotten thru but that is for another day, another topic. 

So maybe, one day, Oprah will stumble onto this site, read my post and invite me and the doctors that saved my life on with Dr. Oz  and talk about the high rates of maternal death at delivery and how many are related to placenta previa and other issues that can be linked to c - sections.   Some women expect  to have OPTIONAL c-sections and the risks are not clearly explained. My doctor says in 5 years, these balloons will be common practice in deliveries.  But that is five years too long with too many deaths in between.  And even if Oprah doesn't see this, if any women is in the same shoes I was in the summer 2009, they can google and find this blog and understand a little more about it.  Please email me if you are in that position so I can give you more details on the surgery and be a support to you.  If this blog helps one person demand the balloonms as added protection and it helps save their lives,that is all of the reward I need.

xoxo

Lupus Celebrity

Dear PALs,

The Alliance for Lupus Research recently had a post where they introduced the acronym PALs for People Affected by Lupus.  I love it.  So from now on, I am going to address you as my PALs, very cool Alliance for Lupus Research,  Check them out on Facebook, affiliated with Robert Wood Johnson University Hospital and Johnson & Johnson Company.  100 percent of profits go to the cause - no money goes to running the nonprofit, J&J and others pick up the tab for the administrative costs.  If you are a fan on my Facebook page, I am a fan of their page.  And if you are not a fan of my page, please do so by clicking here.  Thank you for taking a minute to do this for me so I know how many people I am impacting by my website. 

I am going to try to write later.  Things have been crazy.  I am desperately trying to finish taxes today to give to the accountant and file an extension.  It takes me so long to finish these between procrastination and lupus fog.  If I am interrupted a quick second, I forget where I was and usually repeat one or two steps until I get back on track. After this, I am going to have less stress and can slowly finish catching up on bills, do a budget and get on Dave Ramsey's plan. to pay off debt fast and do what it takes to become debt free.  We need to do that with my health.  Anyway, more to come tonight or tomorrow latest.

xoxo

Lupus Celebrity

 I sound like a broken record  I know but once again I am sorry I haven't posted in a while.  We had a bunch of family illness, that even caught me this time.  I also have been working on our tax returns.  We are owed money and I will be lucky if we don't have to file an extension.  I just can't seem to get them done this year - and  by done I just mean organized for our accountant.  But I have to wait for everyone to be asleep because if one person interrupts or talks to me, I am lost and have to start over.  It is so frustrating how different my mind is now and how the easiest things cause an incredible amount of stress and is almost impossible for me to handle.  But hopefully I will finish them tonight and get them to the accountant tomorrow.  UPDATE; I fell asleep with my son when he woke up cryingcompaining of earaches at 10 pm.  Never finished this blog entry or touched the taxes.  It is now 6 am and I woke up from the pain meds. i neglected to take last night.  I laid writhing in pain for the last couple of hours and finally had enough so now I am waiting desperately for the percocet and mirapex to kick in and give me enough relief to function.

But on to a nicer topic.  We moved to Florida about 4  years ago and we had friends visit from our old state yesterday.  They started out as friends of friends type of relatiopnship and over the years we developed our own friendship.  They are such warm, loving real people and we had such a good day just chilling, talking and watching the kids play.  And the wife is just a girl's girl.  I sometimes find it hard to bond with women but with her I bonded right away.  From the first day I met her, she was such a smart, honest, loving and caring woman who always makes everyone feel at home.  I met her when my husband and I had been dating but broke up for a few weeks.  My friends invited me to one of their friend's surprise party and  I said no thinking it would be way too rude to go to a party like that.  But my friends insisted the couple were so cool and would have no problem with another guest, even a stranger.  Well, that was them and from the moment  I walked through the door, she made me feel comfortable with a big hug and welcome.  I instantly felt comfortable with her which is very rare for me with anyone.  I am usually much more shy and guarded with people I don't know.

Well, we hadn't seen them in 4 yearsbesides keeping in touch a bit through Facebook, etc.  I was a little worried about seeing them and keeping it together because I cry almost anytime I talk about my illnesses.  But we had a great time.  I cried almost right away but she just hugged me and it was fine, I didn't lose it.  We sat on our lanai all day watching the kids play and swim and she kept making me move if she saw the sun was on me in the slightest.  Not many people in my life really get how toxic the sun is for me but but she is just so smart and intuitive,  Since she hasn't seen me in such a long time and knew me before as a strong, independent woman.  She urged me to fight this through diet, lifestyle, attitude, etc.  She knows so much about anti inflamatory foods and is going to research more and help me learn abut the right foods to eat and best exercises with all of my pain.  She reminded me that even though there is no cure for lupus,  I am strong and a fighter and I need to figure out how to live the best life I can with my diseases through diet, exercise and attitude.  The attitude part is feeling confident  I can make a difference in my health through my diet, eercise, modern medicine and alternative treatments like accupuncture, massages, etc.  And of course i will share the good and not so good with all of you.  I am so tired of hurting all of the time and the medicines - 16 last I checked - just taking the edge off.   I am ready to try significant diet changes and anything else that might make a difference.  I am tired of feeling so sick and tired.  And my friend is going to help me research and help create a food plan for me.  I am so grateful she caresand wants to help me so much.  I don't have a huge group of friends because  as  I wrote, I don't bond very easily with people in general, but especially women.  But the close girlfriends I do have are so loyal and caring.  I feel very blessed today and hope that through my food and alternative treatments  I can make a difference in my health and hopefully some of you can too,   And thanks to my friend for giving me some hope.  I have ben without it for a long time without realizing it.  We might not have a cure but we can control our inflamation a great deal through diet which I hope will relieve some of this pain.

If any of you have had success with certain foods or alternative treatments, please share.  And I will share my journey with all of you as I try to improve my quality of life. 

xoxo

Lupus Celebrity

Band together for lupus everyone! Today we need to bombard Congress with emails.  I wish I was in D.C. but with 2 small children and no extra money lying around if we wanted to go as a family (which I would want; I think it would be a positive experience for the kids).  But even though I am not there in person; my heart is with you fellow lupies and I am sending positive and uplifting energy & thoughts to D.C. as you represent us, to help make lupus a well known disease with as much government funding as other diseases.  Delivering the message to Washington  and Obama that no new lupus drugs in 51 years (Benlysta should change that later this year) is totally unacceptable and more money is needed for research and development.  More and more people are getting lupus each year and we need to find our why.  I am seeing and hearing lupus commercials for the first time since I was diagnosed and it is so reassuring to hear them and know that my family and friends who are not as aware of my struggles will hear them and maybe understand why I don't do ladies night much (okay, hardly ever) and why I am such a homebody.

Please  EVERYONE  take action today for lupus. Make your voices heard to your Members of Congress by follow this link;   http://www.capwiz.com/lfa

Thank you all,

xoxo

Lupus Celebrity

I know I have talked before about my goals with this website.   I eventually would love it to be THE website for lupus resources, friendship, advice, etc. There was nothing like this when I was diagnosed and I really needed it at the time. But I know I have a long way to go for that to happen &  I have to blog every day and research important lupus news  that you should know about consistently to make it successful and visited frequently.  I am trying to make my life simpler and get the house organized so I have more time for things that really matter to me; my husband & kids, my family & friends & this blog and website which has been an incredible emotional outlet for me.  Bottom line, my primary desire is to help others with this disease not feel alone.  I want this site, in conjunction with the Lupus Foundation of America's site for educational information on lupus, political activism, local community groups, etc. to support anyone with lupus or suspecting they have lupus.   Right now, I just have the LFA's main webpage on the Links Page but  I will post other links to different education, local chapters,  etc. that are on their site.

When I got lupus. I spent 2 years reeling, flaring and sicker by the day it seemed and was just a basket case.  There is no other way to describe me.  I was so angry, emotional, scared, in so much pain and most of all so alone with all of it.  But it slowly got better after a really rough 2 years.  One day I realized that when I stepped outside with dark long sleeve shirts and pants, hat and sunglasses on and started to feel like pounding the heck out of someone, anyone, after only a few minutes that maybe I was overheating or had an issue with the heat, not only the sun.  So, I put less and lighter clothes on, stayed totally in the shade with a hat on and a big umbrella to shade me, sunglasses and lots of SPF and I did a little better.  The heat and sun still makes me sick though.  So when I  choose to take the boys to a birthday party and it is outside with no shade, I know I will feel horrible a majority of the party starting about 5-10 minutes after being in the sun and end up with an all  day & night headache and spend the next 3 to 7 days feeling like a person does when they have the flu - runny nose, cough, sore throat;  all of that I can handle but my muscle aches get even more painful, the worst toe curling, teeth clenching feeling of  constant throbbing pain.   I chipped one tooth and cracked another from grinding my teeth while in pain awake or sleeping.   My muscles also become totally weak where it hurts to climb stairs, shampoo or blow dry my hair, or write more than about 10- 15 words without severe cramping of my hand.  It happens when I have to write my son's teacher a note in the morning when I am more stiff & at a lower level of pain meds or when coloring with the boys.  So now I have to hibernate all summer from the sun.  I  live in Florida (the sunshine state   so I have no choice, the summer is brutal here for everyone just like 200 times worse for me.  Even when I have to go out in the spring and fall months, it is still very hot and the sun is strong and lots of days I will get almost as sick from just sun exposure walking to the store, UV lights in the store & sun on the way out of the store.   I try to only run errands in the morning when the sun is at its weakest and only 1 or 2 stores and lots of times, even with just that,  I drag walking back to the car sometimes and I don't feel like I have the strength or energy to drive home.  So I get home and rest while my son naps.  I have to get a good amount of rest time to recover from a shopping trip.  I come home from the stores totally exhausted.  For anyone newly diagnosed, my main suggestion would be to listen to your body.  When it is tired, it will tell you and don't push it or you will pay for it.  Whenever possible, stop.  Your body is your temple, sometimes I treated mine like a toilet but I am now trying to worship it as the gift from God that it is.  t is imperative that you treat your body good and give it the rest it needs.  Sleep is very important to prevent or recover from flares.

Keep your pain recorded in a journal with dates, times, duration, where the pain was on your body, number the pain from 1 to 10 in intensity and also stabbing, shooting, waves, throbbing, however you can best describe it.  And give it to your rheummy every time you see him or her and highlight the top 5 you are concerned about.  So if he /she doesn't seem to have a lot of time for you, at minimum, go over your top  5  concerns (some can be so arrogant, like you should not be questioning them about things but stay confident.  You should ask questions and be your own advocate). 

Alright, enough for now.  I am having cleaners come today and I have to clean for them, lol.  It has been great; this is their 2nd time coming every 2 weeks.  But I still have to get the house organized enough on a regular basis so  I don't have to stay up half the night beforehand organizing and straightening up for them.  Because, as I tell my husband, if it is picked up when they get here, they will spend more time focused on really cleaning. 

I will try to post again tomorrow. Make a comment, join the forum, show me people are out there reading!

xoxo

Lupus Celebrity

On one of the forums the other day, someone posted a question on whether she should disclose during a job interview that she has lupus.  Opinions were mixed; most of those for disclosing felt it was the ethical thing to do.  I do not agree.  i would never disclose this during an interview due to the risk of discrimination.  i also would not disclose this once I was hired, especially if  my goal is to advance up through the company.  Their concerns about your health could cause them to choose others over me for promotions. 

The only exception would be if  was very sick.  I still would NOT disclose my illness  in the interview but if it became an issue later (for example, excessive absences due to flares, getting sick from others, going to doctors, etc),  I would disclose it in writing and verbally (written for your employee file so it has your words describing your disability).  If  I work for  a large company with an HR Department this should give you more job security since they will not fire you for anything health related.`

I also want to remind everyone what are legal questions during an interview and what are not.  I found this article which is very good and easy to read so check it out below.  Please post a comment & let us know if you have any examples of discrimination or what your opinion is on whether or not to disclose your health issues.

Sweet  Dreams,

xoxo

Lupus Celebrity

While laws vary from state to state, there are some definite taboo areas with regard to interview questions that employers should be avoiding. Following are some of the basic subject areas and questions that if asked during the course of the interview, might be viewed as illegal questions being asked with the intention to discriminate:

• Questions related to location of birthplace, nationality,  ancestry, or descent of applicant, applicant's spouse, or  parents.
• (Example: Pasquale--Is that a Spanish name?)
• Questions related to your sex or marital status.(Example: Is that your maiden name?)
• Questions related to race or color.
  (Example: Are you considered to be part of a minority  group?)
• Questions related to religion or religious days observed.
  (Example: Does your religion prevent you from working  weekends or holidays?)
• Questions related to physical disabilities or handicaps.
  (Example: Do you have any use of your legs a all?)
• Questions related to health or medical history.
  (Example: Do you have any pre-existing health  conditions?)
• Questions related to pregnancy, birth control, and child  care.
  (Example: Are you planning on having children?)

It should be noted that just because an illegal question has been asked does not necessarily mean a crime has been committed. Just because the question has asked does not establish intent. It is up to a court of law to determine whether the question or any resulting information was used in a discriminatory manner. 

                                                                                                                                                                                                                                         

Well, I finally made a majority of the changes to the website today on my own without any help from GoDaddy this time.  I am so happy with how it looks now and instead of just the blog, I am so excited to have the website & a new forum!  I really hope that we can grow the forum an have an online community for lupus on a LUPUS SITE, verses some of the cookie cutter community board sites that have all illnesses / issues from A to Z. 

Any feedback on the new website?  Likes & dislikes - all feedback is welcome.  I have gotten so consumed with it that I can't look at it with an unbiased attitude anymore. I just love that I was able to create this on my own!  I know it is not a big deal in the grand scheme of things but I am so proud that I got over my fear of the unknown and created this.  Now the biggest challenge is to make it a site that people with lupus know about and can come for support and to grow the forum community.  As I have made abundantly clear in all of my posts asking for comments, it  is so important for me to know that I am making a difference with this site & I am not alone.  Thank you to ALL of you who are visiting the site whether you are posting or not.  Please bookmark the site or subscribe (so you are automatically notified of updates) and let's go through this journey together and help one another to live as healthy as possible and not only survive this illness but thrive.  I am so excited to grow our lupus community one member at a time and getting to know all of you.


Sweet Dreams

xoxo

Lupus Celebrity

Hi everyone, have you missed me?  It has been 11 days since I last posted.  Wow, way to stick to that New Year's goal of a post a day, huh?  Well, I broke that day two or three I think but I have been trying to post every few days at least.  I could tell from all the emails and comments I got on the website that I was missed terribly, lol.  No, not funny, I still really, really want your comments to know that this is making a difference, so if nothing else, type MAD and your name if you don't have time, energy or the desire to write anything else!  Just want to know I am mad - get it, Making A Difference, lol !

Well, anyway, I do have a good reason for my absence.  My husband has been going through a hard time himself health wise and I have been so busy helping him & also taking on a majority of the tasks that he did with the kids while maintaining my own responsibilities.  It has been downright insane.  But it has also helped me appreciate all that my husband does to help me day to day that I take for granted.  For a majority of our relationship, I did most of the running of the household while continuously  climbing the corporate ladder and taking on more and more responsibilities while my salary grew.  When I was diagnosed with lupus, I was out of work on disability within 3 - 4 weeks.  It was never considered that I could maintain my job by me or my superiors, the job was just way too stressful.  That is when my husband and I both had to relearn who I was, not being corporate, successful me.  But I still did my best to stay on top of household work, which was still a huge responsibility for me that through the years has become more and more daunting.  My life is filled with late fees, rushing to do things at the last minute because they are misplaced or forgotten, stressing over the slightest things like scheduling a doctor's appointment or any other of the 2 - 3 specialist appointments I need to schedule and attend per month.  Since I was put on bed rest 6 weeks into my last pregnancy, my household management skills went from fair at best to poor and have never returned.  Before this summer began, I told my husband that I could not handle our 2 boys on my own full time all summer so he left his low paying job and started  up a business of his own.  It has been working well and without his help, I don't know how I would make it through the last year.  

But since he has been so sick, I have been reflecting on how much I expect his help now and I am not as appreciative as I should be.  Just like I expect him to be appreciative of what I do in the house.  I have been totally taking him for granted, I realized.  So I talked to him about it the other day and told him how much I loved him and appreciated how much he helps me.  I really would not get through some days if I didn't have him home with me.   I know we are so blessed that his home business is doing well enough to let us continue like this.  I don't know how I would manage if he had a 9 to 5 job leaving at 8 and returning at 6.

So all in all even though it has been tough going these past 2 weeks with my husband so sick, I think it has helped open my eyes to all that he does to help me.  And I think he appreciated me more too and all I did to help aid him while he was ill. 

But now I am back & I will try to post a couple of times a day starting soon to make up for how long I was gone.  But I want to HEAR from you...am I mad???  lol

Sweet Dreams

xoxo

Lupus Celebrity

Since lupus is both genetic & environmental, I tell my oldest son there is very little chance he will get lupus period, end of story so he does not spend his life worrying.  Statistically, there is only a 10% chance and it is much less common in boys than girls.  I am determined to keep their environmental trigger risks low with a couple of rules.  I tell him the doctor told Mommy there are 2 things that it is important that kids who have a parent with lupus do: 

1)  Always  wear sufficient sunscreen - no exceptions for how long outside or what the weather is like.

2)  Eat well & limit sugar intake

Top 10 Worst Foods for Kids to Eat:

One-third of all U.S. children are overweight or obese, according to the TeensHealth web page. The main cause is overeating, with little regard to the actual nutrition offered by the food. Changing eating habits is not easily done, but minor changes in the type of food consumed can quickly reduce the amount of calorie intake each day. Eliminating the worst foods is one way to improve kids' nutrition.

Hot Dogs
Hot dogs are high in fat and sodium and loaded with preservatives such as nitrates. The average dog has 464 calories with 32 percent of the daily fat, 15 percent of the cholesterol and 44 percent of the recommended daily sodium. This is balanced against the positive nutritional facts of 16 grams of protein and 8 percent of the daily dietary fiber. There are better alternatives for protein and fiber.

My oldest loves hot dogs but we only give him turkey dogs on wheat rolls to try to make it as healthy as possible.

Soda
TeenHealth classifies sodas and energy drinks as "empty" calories that you don't need. The average soda has 10 to 12 teaspoons of sugar in each 10-ounce can. Dr. Marjorie Fitch-Hilgenberg, assistant professor of dietetics at the University of Arkansas, states that soda should be treated as a dessert item, not the meal's beverage.

Our kids have had no soda and we will hold it off as long as we can. They primarily get milk or water, the only time the oldest get juice is in his lunch box for school or if he asks for it.  But no more than 1 glass a day.  Since 7 - 8 months of the year I am forced to stay inside, I want to make sure they are not having too many empty calories.  They are still very active, running around inside, but they probably have a lot more down time, especially in the summer, than most kids. 

Sticky Candy
Candy is high in sugar, and sticky candy contributes to tooth decay, according to the American Dental Association.

I didn't know this.  We don't let our oldest eat much sticky candy due to choking concerns but he does love skittles which we will stop.  I also like to know for my own reference.  I have had so many cavities in the past 4 years (due to the Sjogrens Syndrome).

Doughnuts
Doughnuts are in high calories and provide little nutritional value. Breakfast should provide nutrients to supply energy, but sugar pastries do little to provide such nutrients.

We only do this on really special days like when on vacation at Disney one day.  When he eats a donut otherwise, it is a dessert, not a meal.

Prepackaged Lunch Kits
Registered dietitian Liz Weiss reports that lunch kits are high in fat, saturated fat and sodium and low in fiber, vitamins and minerals. Many of them contain half the daily allowance of saturated fat and all of the sodium necessary for the average adult.

We have used these a couple of times for really busy school days when I don't have time to make lunch but I never liked them anyway because they have a piece of candy in a lot of them and I don't like him having candy during the day, especially at school.  Now I will never buy them.

Sugary Breakfast Cereals
Most non-vitamin fortified breakfast cereals have sugar, artificial flavors and coloring and little nutrition. The fiber and vitamins added during the cereal manufacturing can be supplied in better food choices, such as fruit.

My oldest got the taste of some yummy cereal at friends houses, my parent's house, etc. so he wanted to start buying them.  Instead of depriving him and making him want them even more, I let him get ones that have whole grain but tell them they need to mix it half Cheerios, half the other cereal so at least they are eating some good with the sugary stuff.  And if my oldest is not with me in the grocery store, I only buy good cereal that I know they still like such as raisin bran, granola, etc.

Microwavable Prepackaged Dinners
These are convenient, but are high in fat, salt and preservatives. Not only are the dinners inadequate nutrition for growing children, they fail to teach children proper eating habits or how to prepare healthy meals. The average sodium content ranges from 700 to 1,800 milligrams for each dinner, an unhealthy amount for children to consume in one meal.

We have bought Stouffer's, no preservative meals but only on occasion.  Those do not have preservatives but still a lot of sodium so it can stay on the store shelf for a long time. I wish I could make everything from scratch, maybe some day I will be organized enough, well rested enough and not flaring to do it consistently, long term.

Juice Drinks
Juice is high in sugar content, calories and acid that destroys dental enamel. Dr. Fitch-Hilgenberg warns against drinking juices that are not 100 percent juice. Fruits are a healthier option since they also provide the necessary daily fiber and additional vitamins.

French Fries
French Fries are fatty and soaked in oil. The fat count for this food averages 18 percent of the daily fat requirement and 7 percent of sodium, with only a minimal amount of dietary fiber, protein and calcium.

We have started to cut down french fries and starches in general for the kids.  When we make dinner,we make a lot of vegetables and meat, no starch.  For our fast food nights, we are getting the alternative instead of french fries like apples slices or if everyone really wants fries, we will get one small and split it between the four of us.

Toaster Pastries
Pastries have the same bad effect as doughnuts: high sugar and low nutritional content. Also, many of them have preservatives that allow the product to be stored for a year or more.

The kids have never had these but the oldest does eat dessert every day and it is usually the pre-packaged, high preservative sugary something or other.  I am going to try to make more dessert and store it for him.  I have a sweet tooth too so I hate have a lot of sweet stuff in the house  but homemade is definitely better for us lupies too.

xoxo

Lupus Celebrity

WHAT IS BENLYSTA?

Benlysta is an investigational human monoclonal antibody drug. It is the first in a new class of drugs called BLyS-specific inhibitors that recognize and inhibit the biological activity of B-lymphocyte stimulator, or BLyS®, which was discovered by HGS in 1997. Benlysta is being developed by HGS and GlaxoSmithKline under a co-development and commercialization agreement entered into in August 2006. In lupus, rheumatoid arthritis and certain other autoimmune diseases, elevated levels of BLyS are believed to contribute to the production of autoantibodies – antibodies that attack and destroy the body’s own healthy tissues.

FREQUENCY OF DOSAGE: 

In each of the two Phase 3 trials, patients were randomized to one of three treatment groups: 10 mg/kg belimumab (BLISS-52, n=290), 1 mg/kg belimumab (BLISS-52, n=288), or placebo (BLISS-52, n=287). Patients are dosed intravenously on Days 0, 14 and 28, then every 28 days thereafter for the duration of the study. All patients receive standard of care therapy in addition to the study medication. Safety is reviewed by an independent Data Monitoring Committee throughout both studies.

HOW WELL DID THE CLINICAL TRIALS DO: 

The completed trial had 865 patients.  A clinically and statistically significant improvement was shown in patient response rate for belimumab (BENLYSTA) plus standard of care vs. placebo plus standard of care: 57.6% for 10 mg/kg belimumab, 51.4% for 1 mg/kg belimumab, and 43.6% for placebo (p=0.0006 and p=0.013 for 10 mg/kg and 1 mg/kg belimumab, respectively)   

BENLYSTA inhibits the biological activity of B-lymphocyte stimulator, or BLyS®. BLyS is a naturally occurring protein discovered by HGS which is required for the survival and development of B-lymphocyte cells into mature plasma B cells. Plasma B cells produce antibodies, the body’s first line of defense against infection. In lupus and certain other autoimmune diseases, elevated levels of BLyS are believed to contribute to the production of autoantibodies – antibodies that attack and destroy the body’s own healthy tissues. The results of prospective observational studies show a significant correlation of elevated levels of BLyS with SLE disease activity.

BENLYSTA acts by: (1) specifically recognizing and binding to BLyS, (2) inhibiting BLyS’s stimulation of B-cell development, and (3) restoring the potential for autoantibody-producing B cells to undergo the normal process of apoptosis (programmed cell death). Preclinical and clinical studies show that BLyS antagonists such as BENLYSTA can reduce autoantibody levels in SLE. The results of two pivotal Phase 3 trials show that belimumab can reduce SLE disease activity.

BENLYSTA Inhibits the Biological Activity of BLyS

Figure 1. BENLYSTA (belimumab) specifically binds to and inhibits the biological activity of BLyS. Preclinical and clinical results to date show that BENLYSTA can reduce the levels of circulating B cells, including precursor cells to the plasma B cells that produce the body’s normal and abnormal antibodies. This suggests that BENLYSTA may prove useful in the treatment of lupus and certain other autoimmune diseases.

WHAT SPECIFICALLY DID IT IMPROVE IN SLE PATIENTS:

FLARES

• Belimumab significantly delayed time to first SLE disease flare versus placebo (SLE Flare Index/SFI): median = 119 days for 10 mg/kg belimumab, 126 days for 1 mg/kg belimumab, and 84 days for placebo (p=0.0036 and p=0.0026 for 10 mg/kg and 1 mg/kg belimumab, respectively vs. placebo). 
• The risk of having severe SLE disease flares (SFI) was reduced over 52 weeks by 43% in the 10 mg/kg belimumab treatment group and by 24% in the 1 mg/kg belimumab treatment group vs. placebo (p=0.0055 and p=0.1342 for 10 mg/kg and 1 mg/kg belimumab, respectively). 
• The risk of having 1 BILAG A (severe flare) or more than 1 BILAG B (moderate flare) organ domain score was reduced by 42% in the 10 mg/kg belimumab treatment group and by 13% in the 1 mg/kg treatment group vs. placebo (p=0.0016 and p=0.3722 for 10 mg/kg and 1 mg/kg belimumab, respectively).  

DISEASE ACTIVITY

• A significantly greater percentage of patients receiving belimumab achieved a reduction in SELENA SLEDAI score of at least 4 points by Week 52 (p=0.0024 and p=0.019 for 10 mg/kg and 1 mg/kg belimumab, respectively, vs. placebo), with improvement observed for 10 mg/kg belimumab within 4-8 weeks and reaching statistical significance at Week 16 and Weeks 24-52 (p<0.05 vs. placebo). 
• A significantly greater improvement in Physician’s Global Assessment (PGA) at Week 52 was observed in the belimumab treatment groups, with a mean percentage change from baseline of 45.7% for 10 mg/kg belimumab, 39.3% for 1 mg/kg belimumab, and 27.8% for placebo (p<0.0001 and p=0.004 for 10 mg/kg and 1 mg/kg belimumab, respectively, vs. placebo). The improvement in PGA was observed within 4-8 weeks and was sustained through 52 weeks (p<0.05 for both belimumab treatment groups).

STEROID USE

• In patients who were receiving >7.5 mg per day of prednisone at baseline, a significantly higher percentage of patients in the 1 mg/kg belimumab treatment group vs. the placebo group had their average prednisone dose reduced by at least 25% from baseline to 7.5 mg per day or less during the last 12 weeks of study (p=0.025). A higher percentage of patients in the 10 mg/kg belimumab treatment group vs. the placebo group also had their average prednisone dose reduced by at least 25% from baseline to 7.5 mg per day or less during the last 12 weeks of study, but the difference did not reach a level of statistical significance (p=0.053).
• In patients who were receiving <7.5 mg per day of prednisone at baseline, significantly fewer patients in the 10 mg/kg belimumab treatment group vs. the placebo group increased their prednisone use to >7.5 mg per day during the last 20 weeks of study (p<0.05). Fewer increases in prednisone use also were observed in the 1 mg/kg belimumab treatment group vs. the placebo group during the last 20 weeks of study, but the difference did not reach a level of statistical significance.

FATIGUE AND QUALITY OF LIFE

• Improved fatigue scores were observed in the 10 mg/kg belimumab treatment group vs. the placebo group within 4-8 weeks, and both belimumab treatment groups achieved statistically significant improvement of fatigue by Week 52 (FACIT-Fatigue Scale; p<0.05 for both belimumab groups vs. the placebo group). 
• Improvement in health-related quality of life (HRQOL) as measured by the SF-36 Physical Component Summary (PCS) score at Week 24, a prespecified major secondary endpoint, was not significantly different among treatment groups. HRQOL improvement as measured by the SF-36 PCS score at Week 52 was significantly greater in both belimumab treatment groups vs. the placebo group (p=0.025 for 10 mg/kg and p=0.027 for 1 mg/kg belimumab, respectively).

SAFETY

In BLISS-52, belimumab was generally well tolerated, with rates of overall adverse events, serious adverse events, infections and fatalities comparable between belimumab and placebo treatment groups. Serious infections were reported in 5.9% of patients on placebo and 6.1% of patients on belimumab. The most common adverse events were headache, arthralgia, upper respiratory tract infections, urinary tract infection and influenza, and were also comparable between belimumab and placebo treatment groups. No malignancies were reported.


For the full article, go to HGSI's website HERE. 

Sweet Dreams

xoxo

Lupus Celebrity

Since no two lupus cases are ever exactly the same.  Did you know a new patient is diagnosed with lupus every 1/2 hour and that over 5 million people are diagnosed with lupus worldwide?  How about that more people are diagnosed with lupus than  AIDS, cerebral palsy, multiple sclerosis, cystic fibrosis, and sickle cell anemia COMBINED?  I didn't either.  Check out this great video on You Tube.  I just love it, let's catch a cure for lupus! 

http://www.youtube.com/watch?v=NkRIqrRi2gc&feature=player_embedded#


xoxo

Lupus Celebrity

If you live in or near LA, this looks like a great event by Lupus LA:

Get Lucky For Lupus

Thursday February 25th
7 pm to 11:30 pm
Andaz Hotel, West Hollywood

And look at the listing of all the celebrities participating in Lupus LA charity events!  Of course, Seal,  who wore his lupus scars without explanation for a long time & now has recently gone public about suffering with discoid lupus.  Some others that I have heard of before at lupus events including Sharon Stone, whose sister has lupus, Kellie Martin,whose sister died from lupus, Nicky Hilton who has been at a bunch of events, Paula Abdul  and a few others.  But some new names for me....Drew Barrymore, Dakota Fanning, Mischa Barton and David Foster.  We need more of these big names to talk about lupus & raise awareness.   So if you see a silly movie with Jesse Metcalfe in it (also was the young gardener from Desperate Housewives that Eva Longoria had an affair with) , keep it on a little while since he supports us, show your support of him.  Thanks to everyone participating in this poker event and to pokerstars.net for participating in a lupus fundraiser.


xoxo

Lupus Celebrity

GRAND PRIZE: Seat at the PokerStars.net Caribbean Adventure - Atlantis Hotel and Resort in Paradise Island, Bahamas.

2ND PLACE PRIZE: Mohegan Sun’s Ultimate Getaway Giveaway:

· 2 night stay at the luxurious hotel at Mohegan Sun · VIP Check-in
· In-room gift upon arrival
· Table for two at the Wolf Den (a 300-seat music venue in Casino of the Earth)
· Two martinis at Leffingwells Martini Bar
· Ground transportation within 250 miles
· $250 gift certificate to The Shops at Mohegan Sun
· $250 gift certificate to the world-class Elemis Spa
· $500 food allowance

Additional prizes include: Trips to Mazatlan, Hotel stays a the Andaz New York and London, Chef's dinner for 10 at the Andaz West Hollywood, VIP experience of the live LA taping of the PokerStars.Net Million Dollar Challenge on FOX, Plus incredible auction items, raffles, and much more to come!

The celebrities that have attended Lupus LA’s recent events include Drew Barrymore, Sharon Stone, Seal, Jason Alexander, Nicky Hilton, Melissa Joan Hart, Paula Abdul, Scott Grimes, Parminder Nagra, Wayne Newton, Kellie Martin, Jamie Pressley, Eva La Rue, Toni Braxton, Backstreet Boys, Dakota Fanning, Stacy Keibler, Kate Flannery, Karina Smirnoff, Rosanna Arquette, Misha Barton, Kris Jenner, Daisy Fuentes, Jesse Metcalfe, David Foster and many more.

PURCHASE TICKETS: http://lupusla.org/events/poker/2010.php

CELEBRITIES confirmed so far...more being added daily!

James Kyson Lee
Lou Diamond Phillips
Greg Grunberg
Jesse Metcalfe
Scott Grimes
Parminder Nagra
Stephen Colletti
Paul Johanson
Ryan Cabrera
Josh Henderson
Tiffany Michelle
Jesse Spencer
Jerry Mathers
WWE The Bella Twins
AJ Buckley

PURCHASE TICKETS: http://lupusla.org/events/poker/2010.php
EVENT PAGE: http://www.hollywoodknights.com/newsite/2010Lupus.php

I belong to a support group online that I have not introduced to my website yet.  Soon, but I want it to be perfect first, where I am consistently blogging every day and I am obviously not there yet.  I am trying to make so many organizational changes to the house to make my life easier to free up more time to play with the kids, blog, cook, try to do light weightbearing exercise for my bone density, relax and take care of me!   My SIL and I are hiring cleaners together and getting a discount since there are two of us that live pretty close by.  I have been putting up hooks, shoe racks, hampers every place possible to get the boys to clean up but no use yet, the house still gets trashed!!  I just need to get my house manageable day to day so it stays clean in between the 2 week cleaner visits.  Because I spend so much tme picking up after Mr Magoo (that is my new nickname for my husband because he acts like the cartoon guy but more on that in future posts) and my 2 boys that if I flare and am out for even a day or two, the house is completely trashed again.  There is hardly anything Mr Magoo actually puts away after taking out and my oldest acts just like him at 6,  Lord, are my future daughter in laws going to curse me if I don't figure out how to raise strong men that knows it takes both parents to clean,manage and run a household.  But now to give Mr. Magoo a little bit of credit, he has really risen to the challenge these past 2 years since I have been so much sicker after giving birth to my 2nd son.  He does so much more with the kids, chores, running errands, etc. than I ever imagined he was capable of.   But I am a woman, and we are pretty darn near perfect lol, so I want more.  Pick up your darn clothes off the floor!  Put back that screwdriver, tape measurer, book, everything and anything that is just left out.  But I have noticed how much he is trying to change and I appreciate it so much, but of course I still want him to change more, ha ha ha!

Wow, I went off on a tangent which was not what I was originally even planning on blogging about.  I guess I needed to vent.  But back to the support group.  There are many newly diagnosed with lupus and I feel so bad for the majority of women but also some men whose lives are turned upside down after being diagnosed.  I remember for me it was at least 3 years of mourning before I came more to grips with having this disease, understood a little better how the disease affects me and how I can manage flares and control the disease by avoiding certain triggers. 

I remember when the doctor called me to tell me my blood work indicated SLE and that we would need to do further blood work with a rheumy and a biopsy with a dermatologist.  The phone rang after 8 pm and it was the doctor on caller ID,  I now know whenever a doctor calls you late at night it is not  good news.  She said she wanted to talk about my blood work results and I asked, voice cracking, if my husband could get on the phone with us.  We sat in our dining room wood floor facing each other on different phones while my husband frantically wrote down every word she said while tears streamed silently down my face.  I was so sad that night because I knew deep down what the future test results and biopsy later confirmed, I had sle.  

I don't know how long I spent crying over  this disease.  I still do a lot now, especially when I am in a lot of physical pain like when I wake up some mornings in so much pain & cry until the pain &  RLS pills start to kick in about 1/2 hour later.  I feel raw, exposed, naked when it comes to the intensity of my physical and emotional pain with lupus.  It is very difficult for me to talk about and verbalize.  I also still cry for my losses.  No more beaches, no more anywhere that does not have shade and temperatures in the 70s.  I hibernate the summer  away in the sunshine state; the sun, heat  & humidity poison to my body.  And even though I stay inside as much as possible, I still run a fever every day all summer of high 99 to low 100s and my complement gets low from even the briefest sun exposure with SPF protection.  But I cry the most for my kids; I wish I could be a "normal" Mom that could take them swimming, to the beach, to the playground, watch their games, etc. 

But on better days I wake up and remember I am home with my sons instead of working my 60+ hour work week.  I have no organ involvement at 5 years since diagnosis which is a good sign.  And there are A LOT of people who have it a heck of a lot worse than me.  

And you know what?  God created me to be a fighter.  Like everyone else in the world, I haver had my share of dysfunction and hard
times and I have never given up, never questioned why me, none of that.  I always tell my son that I would rather something hurt me than my boys  He is just a piece of work at 6 year old says, "Ok Mom, you are on a boat with Daddy, little brother & me and can only save 2 of us.  Who do you save?"  I laugh and say I would save them all no doubt no matter what.  But I have always prayed and asked God that if we need to have any hardship in our family, I want to take that on instead of my kids.  So I never ask why,  I am just grateful for each day and pray I can be here to see my children grow up and have children of their own.  I want to do everything in my power to make that happen.

xoxo

Lupus Celebrity
 

I try to talk to or read about anyone's experience with Benlysta just to ensure that it is still going well and no issues first of all for the health of me and all of you lupus readers out there (you are out there, right?) and a low second is for my stock.  I don't want to lose my family more money for a mistake on my part.  I have lost some $$ by a few stupid picks but overall we have done over 150% returns so I am happy with my handling of it

Anyway, back to Benlysta, the drug that will hopefully get fast track approval from the FDA soon.  We need this drug in 2010.  I read about a woman on methotexrate (MTX) and was about to go on steroids due to pain, went on Benlysta instead and 2 years later is doing great.  She still has some bad days but much much better than before and her blood work is better.

She shared Benlysta only stays in your system 28 days and it is taken once per month for one hour via IV.  But imagine not having your whole immune system suppressed, only the B cells where a lot of the genetic problems lie and getting part of your life back.  What a joy that would be.

50 years and no new drug...my fellow lupies, we are SO DUE! 
Thoughts?  Please let me hear from you!


xoxo

Lupus Celebrity

Definition of myocardial ischemia

Well, I think it was a typo but ischemia was spelled wrong in the last study but below is the best plain language definition I could find for Myocardial Ischemia.  So remember, any women with lupus ages 35 to 44, we are 50 TIMES MORE LIKELY to get this than a healthy woman.  I am definitely talking to my GP doctor about this next time I see him.  I highlighted some sections below I found especially interesting for those of you that like to "speed read" like my husband 

xoxo

Lupus Celebrity

Definition of Myocardial ischemia
 
Myocardial ischemia is an intermediate condition in coronary artorary disease during which the heart tissue is slowly or suddenly starved of oxygen and other nutrients. Eventually, the affected heart tissue will die. When blood flow is completely blocked to the heart, ischemia can lead to a heart attack. Ischemia can be silent or symptomatic. According to the American Heart Association, up to four million Americans may have silent ischemia and be at high risk of having a heart attack with no warning.

Symptomatic ischemia is characterized by chest pain called angina pectoris. The American Heart Association estimates that nearly seven million Americans have angina pectoris, usually called angina. Angina occurs more frequently in women than in men, and in blacks and Hispanics more than in whites. It also occurs more frequently as people age—25% of women over the age of 85 and 27% of men who are 80–84 years old have angina.

People with angina are at risk of having a heart attack. Stable angina occurs during exertion, can be quickly relieved by resting or taking nitroglycerin, and lasts from three to twenty minutes. Unstable angina, which increases the risk of a heart attack, occurs more frequently, lasts longer, is more severe, and may cause discomfort during rest or light exertion.

Ischemia can also occur in the arteries of the brain, where blockages can lead to a stroke. About 80-85% of all strokes are ischemic. Most blockages in the cerebral arteries are due to a blood clot, often in an artery narrowed by plaque. Sometimes, a blood clot in the heart or aorta travels to a cerebral artery. A transient ischemic attack (TIA) is a "mini-stroke" caused by a temporary deficiency of blood supply to the brain. It occurs suddenly, lasts a few minutes to a few hours, and is a strong warning sign of an impending stroke. Ischemia can also effect intestines, legs, feet and kidneys. Pain, malfunctions, and damage in those areas may result.

Decreased mortality rates associated with SLE can be attributed to earlier diagnosis (including milder cases), improvement in disease-specific treatments, and advances in general medical care. According to the CDC, one third of SLE-related deaths in the United States occur in patients younger than 45 years, making this a serious issue despite declining overall mortality rates.

Infectious complications related to active SLE and immunosuppressive treatment are now the most common cause of death in early active SLE, and accelerated arteriosclerosis is a key cause of late mortality.  The Framingham Offspring Study demonstrated that women aged 35-44 years with SLE were 50 times more likely to develop myocardial aschemia than healthy women.  Causes of accelerated coronary artery disease (CAD) in persons with SLE are likely multifactorial, including endothelial dysfunction, inflammatory mediators, corticosteroid-induced atherogenesis, and dyslipidemia associated with renal disease.

 

This study is very disturbing!   I know medicine has made lots of advances in the past 50 years which has significantly decreased mortality rates in lupus but still NO new drug has come out in over 50 years!  Benlysta and others are on their way and will hopefully all be FDA fast tracked and this time next year our conversations on drug choices should be very different then they are today and not include drugs used now as much like MTX, methotexrate, and I know there are a lot more total immunosuppresants that others could list so feel free to comment and add on to this list.  Steroids & prednisone might always be needed with lupus but hopefully with much less frequency and length of time as they are prescribed now.  We need more drug companies focusing on lupus to get more drugs options available for us and as a result, increase the successful treatment of a higher % of lupus patients.

This new study says 1/3 of lupus deaths are in patients younger than 45 years old and it looks like they attribute it mainly to infections from active SLE and/or immunosuppresants .  For older cases of death, it was primarily from heart issues.  I am supposed to go on an immunosuppressant next, I am 38 and I have never had my heart checked other than blood work at initial diagnosis and the stethoscope.  My heart risks besides having LUPUS:  1) I have the MTHFR gene - only one if I remember right 2) I have high homocysteine levels (low in the high range but still high enough that I am on folbee every day for the rest of my life).  3) I have very low HDL levels (lowest around 6, highest 18 although with lupus fog I can ALWAYS be a little off especially when I am trying to pull something out from my brain).  All alone might mean nothing but the three combined with this lupus study data?  I think it is time to look at my heart some more for inflammation or other issues.  And probably the same for many of you!

They are saying we are 50 times more likely than other women to have myocardial aschemia!  I have no idea what it is but I will research it and post some more info. soon. Any suggestions on what heart testing I should request from my gp doctor? 

This disease is never ending and the doctor appointments alone are so exhausting but I owe it to my kids to try to stay as healthy as possible and educated about my risks.  Then with the help of my doctors and any advice anyone reading my blog wants to share to determine which I think are my most dangerous risks and test / treat anything needed.  I will live with this pain for a lifetime, I just want to be given the opportunity to continue to live long enough to raise my babies and see them settled and finally give me some daughters to spoil until they give me some grandchildren and then I will be moving next door to one for 6 months and the other for 6 months.  Better yet, my husband and I will rent a huge RV and drive it 6 months to one son & 6 months to the other   Can you imagine my poor daughter in laws?  haha...all out of love.

XOXO

Lupus Celebrity

Mortality/Morbidity

The natural history of SLE varies from relatively benign disease to rapidly progressive and even fatal disease. SLE often waxes and wanes in affected individuals throughout life, and features of the disease vary greatly between individuals. The disease course is milder and survival rate higher among persons with isolated skin and musculoskeletal involvement than in those with renal and CNS disease.

SLE carries an average 10-year survival rate that now exceeds 90%.  Prior to 1955, the 5-year survival rate was less than 50%. Decreased mortality rates associated with SLE can be attributed to earlier diagnosis (including milder cases), improvement in disease-specific treatments, and advances in general medical care. According to the CDC, one third of SLE-related deaths in the United States occur in patients younger than 45 years, making this a serious issue despite declining overall mortality rates. In 1976, Urowitz first reported bimodal mortality in early versus late SLE, noting that SLE-related deaths usually occur within the first 5-10 years of symptom onset.

Infectious complications related to active SLE and immunosuppressive treatment are now the most common cause of death in early active SLE, and accelerated arteriosclerosis is a key cause of late mortality.  The Framingham Offspring Study demonstrated that women aged 35-44 years with SLE were 50 times more likely to develop myocardial aschemia than healthy women.  Causes of accelerated coronary artery disease (CAD) in persons with SLE are likely multifactorial, including endothelial dysfunction, inflammatory mediators, corticosteroid-induced atherogenesis, and dyslipidemia associated with renal disease.

For anyone who might actually have bookmarked this site and checked to see if I had made any entries in the past 1 1/2 days, I sincerely apologize that the site was down for so long!

I, the incredible techie that I am, tried to make some changes to the blog; this is the first time i have done this, I am a virgin blogger   I created the website by myself with calls to Go Daddy technical support maybe, hmmmm...my lupus fog, I can't remember...if i had to give a guesstimate I would say 12 calls but then it was created (!) but not totally the way I wanted it.  But I was so excited that it was launched and so embarrassed that I had bothered Go Daddy so much, I just decided to start with this and change it later.  I would start reaching out to people, trying to get the website name and lupus out there and making a difference and so far it has been an interesting and enlightening journey  and just unbelievably educational and healing for me at the same time.  When I get a comment from one of you, I am just overjoyed.  It makes my whole day to know that someone searched something for lupus, lupus celebrities, or however found my site, read my entries & thought enough to leave me a comment.  I am not alone out in cyberspace!  It just thrills me so thank you and please keep posting comments.  I appreciate all of you and hope that by reading my blog, you feel less alone in this hard world with lupus.

OK, as always I digress, back to the site being down for 1 1/2 days.  I am so sorry.  I promise not to mess around with this site again until I am ready to knock your socks off with an updated site that has all sorts of lupus resources.  But it might take me a while to figure out how to do all this after the mess I made of it this time so stay tuned, it might be a little while   Also, if you like reading me or want to be kept up to date on lupus, SUBSCRIBE!!  The more subscribers I have, the more I hope I can negotiate prices on some of these products to get the site more out there.

This website is my goal for 2010.  I want to update it as much as possible and be the website to go to for everything related to lupus, lupus news, where to find the best websites for our various secondary auto immune diseases so common for us luppies and more.  I have so many more plans but there are only 11 entries from me so far in 2010.  Not great, I know, but most of them are recent.  I took a few extra days off from my New Year's resolutions due to holiday tiredness   So I am trying to update at least once a day but hopefully more. 

Enough on my plans, but I just want to explain one more thing about why I am doing this website.  When I  got lupus. I spent 3 years reeling, flaring, getting sicker and sicker by the day it seemed sometimes and I was angry, depressed, just a basket case.  There is no other way to describe me.  I was so angry, so scared, I would have horrible panic and anxiety attacks and was in so much pain, so bone dead tired like a tired I had never experienced before.  I know all you luppies know what I mean but for any non-luppies reading , a bone dead tired so much worse than after the stay up all night sleepovers in my 20s that hurt so much more than the ones in my teens.  A tiredness that made me fall asleep while sitting on my couch talking and laughing with 2 girlfriends, never making it through a movie, no matter how good it, waking up in a panic and not knowing where my toddler was because he had climbed out of my bed without me hearing him and left the only safe proof room in the house because the rest of it was (and still is) so filled with toys, clutter, dishes, etc.  Fatigue that is just impossible to find words to describe other than bone dead tired.  Like you can hardly move your body but you have to because we have kids, dogs, work, responsibilities so we are forced to function when we are that tired and it is so hard to keep moving when you just want to quit and run far away and sleep.  It hurts to dress my kids, buttons are torture, put on  shoes, brush hair, put on sunscreen, I am totally exhausted.  When I am flaring really badly, I put toys and things for my littlest son to play with in the bedroom, make sure everything is safe put on Sesame Street and sleep as much as I can.  And just function from task to task until my husband comes home and takes over and then I can lay in bed or take a bath and then take an Ambien or whatever and just sleep.  Tell my husband he has kid duty and sleep as long as I can to try to strengthen my immune system as quickly as possible. 

But I digress again!  Back to my first digression, it will be 5 years in October since I was diagnosed and even now, the worst emotional sadness for mes feeling so alone.  So that is my primary goal, to connect with other luppies and help each other to not feel so alone. 

Now, I have completed digression 1 & 2, back to the original point of the totally annoying technical difficulties.  I apologize again and promise I will do everything in my power to never have that happen again.  I am very glad to be back, sharing and that my site is fixed.  It is so therapeutic for me.  Now please share back and leave a comment haha...I'm not kidding!  Sweet dreams.

xoxo

Lupus Celebrity

The Wall Street Journal posted a good article on medical marijuana debating some of the positives & negatives of it and mention lupus as one of the illnesses that it is debatable whether marijuana helps or hurts us.  I was surprised that the FDA does not regulate the marijuana, I picture these drug dispensaries having to buy from dealers - but seriously, where IS it ordered from and from whom?  Also, I was surprised at the end that marijuana has no link to lung cancer.  I had not heard that and thought if you smoked it, there would be equal risk.  Thoughts?

xoxo

Lupus Celebrity

Is Marijuana A Medicine?

Charlene DeGidio never smoked marijuana in the 1960s, or afterward. But a year ago, after medications failed to relieve the pain in her legs and feet, a doctor suggested that the Adna, Wash., retiree try the drug.Ms. DeGidio, 69 years old, bought candy with marijuana mixed in. It worked in easing her neuropathic pain, for which doctors haven't been able to pinpoint a cause, she says. Now, Ms. DeGidio, who had previously tried without success other drugs including Neurontin and lidocaine patches, nibbles marijuana-laced peppermint bars before sleep, and keeps a bag in her refrigerator that she's warned her grandchildren to avoid.

"It's not like you're out smoking pot for enjoyment or to get high," says the former social worker, who won't take the drug during the day because she doesn't want to feel disoriented. "It's a medicine."

For many patients like Ms. DeGidio, it's getting easier to access marijuana for medical use. The U.S. Department of Justice has said it will not generally prosecute ill people under doctors' care whose use of the drug complies with state rules. New Jersey will become the 14th state to allow therapeutic use of marijuana, and the number is likely to grow. Illinois and New York, among others, are considering new laws.

As the legal landscape for patients clears somewhat, the medical one remains confusing, largely because of limited scientific studies. A recent American Medical Association review found fewer than 20 randomized, controlled clinical trials of smoked marijuana for all possible uses. These involved around 300 people in all—well short of the evidence typically required for a pharmaceutical to be marketed in the U.S.Doctors say the studies that have been done suggest marijuana can benefit patients in the areas of managing neuropathic pain, which is caused by certain types of nerve injury, and in bolstering appetite and treating nausea, for instance in cancer patients undergoing chemotherapy. "The evidence is mounting" for those uses, says Igor Grant, director of the Center for Medicinal Cannabis Research at the University of California, San Diego.

But in a range of other conditions for which marijuana has been considered, such as epilepsy and immune diseases like lupus, there's scant and inconclusive research to show the drug's effectiveness. Marijuana also has been tied to side effects including a racing heart and short-term memory loss and, in at least a few cases, anxiety and psychotic experiences such as hallucinations. The Food and Drug Administration doesn't regulate marijuana, so the quality and potency of the product available in medical-marijuana dispensaries can vary.

Though states have been legalizing medical use of marijuana since 1996, when California passed a ballot initiative, the idea remains controversial. Opponents say such laws can open a door to wider cultivation and use of the drug by people without serious medical conditions. That concern is heightened, they say, when broadly written statutes, such as California's, allow wide leeway for doctors to decide when to write marijuana recommendations.

But advocates of medical-marijuana laws say certain seriously ill patients can benefit from the drug and should be able to access it with a doctor's permission. They argue that some patients may get better results from marijuana than from available prescription drugs.

Glenn Osaki, 51, a technology consultant from Pleasanton, Calif., says he smokes marijuana to counter nausea and pain. Diagnosed in 2005 with advanced colon cancer, he has had his entire colon removed, creating digestive problems, and suffers neuropathic pain in his hands and feet from a chemotherapy drug. He says smoking marijuana was more effective and faster than prescription drugs he tried, including one that is a synthetic version of marijuana's most active ingredient, known as THC.

The relatively limited research supporting medical marijuana poses practical challenges for doctors and patients who want to consider it as a therapeutic option. It's often unclear when, or whether, it might work better than traditional drugs for particular people. Unlike prescription drugs it comes with no established dosing regimen.

"I don't know what to recommend to patients about what to use, how much to use, where to get it," says Scott Fishman, chief of pain medicine at the University of California, Davis medical school, who says he rarely writes marijuana recommendations, typically only at a patient's request.

Researchers say it's difficult to get funding and federal approval for marijuana research. In November, the AMA urged the federal government to review marijuana's position in the most-restricted category of drugs, so it could be studied more easily.

Gregory T. Carter, a University of Washington professor of rehabilitation medicine, says he's developed his own procedures for recommending marijuana, which he does for some patients with serious neuromuscular conditions such as amyotrophic lateral sclerosis, or Lou Gehrig's disease, to treat pain and other symptoms. He typically urges those who haven't tried it before to start with a few puffs using a vaporizer, which heats the marijuana to release its active chemicals, then wait 10 minutes. He warns them to have family nearby and to avoid driving, and he checks back with them after a few days. Many are "surprised at how mild" the drug's psychotropic effects are, he says.

States' rules on growing and dispensing medical marijuana vary. Some states license specialized dispensaries. These can range from small storefronts to bigger operations that feel more like pharmacies. Typically, they have security procedures to limit walk-in visitors.

At least a few dispensaries say they inspect their suppliers and use labs to check the potency of their product, though states don't generally require such measures. "It's difficult to understand how we can call it medicine if we don't know what's in it," says Stephen DeAngelo, executive director of the Harborside Health Center, a medical-marijuana dispensary in Oakland, Calif.

Some of the strongest research results support the idea of using marijuana to relieve neuropathic pain. For example, a trial of 50 AIDS patients published in the journal Neurology in 2007 found that 52% of those who smoked marijuana reported a 30% or greater reduction in pain. Just 24% of those who got placebo cigarettes reported the same lessening of pain.

Marijuana has also been shown to affect nausea and appetite. The AMA review said three controlled studies with 43 total participants showed a "modest" anti-nausea effect of smoked marijuana in cancer patients undergoing chemotherapy. Studies of HIV-positive patients have suggested that smoked marijuana can improve appetite and trigger weight gain.

Donald Abrams, a doctor and professor at the University of California, San Francisco who has studied marijuana, says he recommends it to some cancer patients, including those who haven't found standard anti-nausea drugs effective and some with loss of appetite.

Side effects can be a problem for some people. Thea Sagen, 62, an advanced neuroendocrine cancer patient in Seaside, Calif., says she expected something like a pharmacy when she went to a marijuana dispensary mentioned by her oncologist. She says she was disappointed to find that the staffers couldn't say which of the products, with names like Pot 'o Gold and Blockbuster, might boost her flagging appetite or soothe her anxiety. "They said, 'it's trial and error,' "she says. "I was in there flying blind, looking at all this stuff."

Ms. Sagen says she bought several items and tried one-eighth teaspoon of marijuana-infused honey. After a few hours, she was hallucinating , too dizzy and confused to dress herself for a doctor's appointment. Then came vomiting far worse than her stomach upset before she took the drug. When she reported the side effects to her oncologist's nurse and her primary-care physician, she got no guidance. She doesn't take the drug now. But with advice from a nutritionist, her appetite and food intake have improved, she says.

Other marijuana users may experience the well-known reduction in ability to concentrate. At least a few users suffer troubling short-term psychiatric side effects, which can include anxiety and panic. More controversially, an analysis published in the journal Lancet in 2007 tied marijuana use to a higher rate of psychotic conditions such as schizophrenia. But the analysis noted that such a link doesn't necessarily show marijuana is a cause of the conditions.

Long-term marijuana use can lead to physical dependence, though it is not as addictive as nicotine or alcohol, says Margaret Haney, a professor at Columbia University's medical school. Smoked marijuana may also risk lung irritation, but a large 2006 study, published in Cancer Epidemiology, Biomarkers & Prevention, found no tie to lung cancer.

I DID IT!! I cut down to .25 of prednisone and I don't feel any worse.   I am so excited.  I just want to stop taking it now but I will give it one more week and then quit before I meet with my rheummy.  I will be prednisone free so soon!  And on to the methotexrate (MTX)  ...here's a description of MTX you can read or skip down for more from me:

What is Methotexrate (MTX):  Methotrexate is used for cancer treatment generally in higher doses than for other uses and is often administered intravenously or intramuscularly. Methotrexate is used to treat psoriasis, an inflammatory skin disease, as well as the arthritis that occurs in 10 percent of these patients psoriatic arthritis), It is also used to treat active rheumatoid arthritis in adults and children and other rheumatic diseases, including polymyotsitis, systemic lupus erythematosus. Methotrexate has been used to induce miscarriage in patients with ectopic pregnancies.

DRUG INTERACTIONS: Using non-steroidal antiinflamatrory drugs (NSAIDs) before or during methotrexate treatment may result in serious adverse events because NSAIDS may increase the blood concentrations of methotrexate. Combining methotrexate with drugs that adversely affect the liver or kidneys may result in additional liver or kidney toxicity.

PREGNANCY: Methotrexate should not be used in pregnancy,as it can be toxic to the embryo and can cause fetal defects and spontaneous abortion (miscarriage). It should be discontinued prior to conception if used in either partner. Male patients should stop taking methotrexate at least 3 months prior to a planned conception and females should discontinue use for at least one ovulatory cycle before conception.

NURSING MOTHERS: Methotrexate is excreted in breast milk and should not be used by nursing mothers.

SIDE EFFECTS: Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver, kidneys and bone marrow, which require regular monitoring with blood tests. It can cause headache and drowsiness which may resolve if the dose is lowered. Methotrexate can cause itching,, skin rash,, dizziness, and hair loss. dry, non-productive cough can be a result of rare lung toxicity.

WARNING: Methotrexate has rarely caused serious (sometimes fatal) side effects. Therefore, this medication should be used only to treat cancer or more severe cases of psoriasis or rheumatoid arthritis. Methotrexate has caused birth defects  and fetal death. Women must avoid becoming pregnant while taking this medication. Pregnant women who have psoriasis or rheumatoid arthritis must not use methotrexate. (See also Precautions) If you have kidney problems or excess body water (ascites, pleural effu sion), you must be closely monitored and your dose may be adjusted or stopped by your doctor. Methotrexate (usually at high dosages) has rarely caused severe (sometimes fatal) bone marrow suppression (decreasing your body's ability to fight infections) and stomach/intestinal disease (e.g., bleeding) when used at the same time as non-steroidal anti-inflammatory drugs (NSAIDs such as indomethacin, ketopro  Therefore, NSAIDs should not be used with high-dose methotrexate. Caution is advised if you also take aspirin. NSAIDs/aspirin may be used with low-dose methotrexate such as for the treatment of rheumatoid arthritis if directed by your doctor. If you are using low-dose aspirin (81-325 mg per day) for heart attack and stroke prevention continue to take it unless directed otherwise. Consult your doctor regarding safe use of these drugs (e.g., close monitoring by your doctor, maintaining stable doses of NSAIDs). In rare instances, this drug may also cause liver problems when it is used for long periods of time. If you are using methotrexate long-term, a liver biopsy carinii pneumonia), skin reactions, diarhhea and mouth sores (ulcerative stomatitis). (See also Side Effects.) Lumps (tumors/abnormal growths) may very infrequently appear during methotrexate use. If this occurs, the drug must be stopped and treatment may be needed. Consult your doctor immediately if new lumps/growths occur. When used to treat tumors, methotrexate sometimes causes side effects due to the rapid destruction of cancer cells (tumor lysis syndrome). Tell your doctor immediately if you experience symptoms such as irregular heartbeat or muscle weakness. Although rare, this medication when used with radiation treatment may increase the risk of tissue and bone damage. Discuss the risks and benefits of your treatment plan with your doctor.

Obtained from medicinenet.com


I am not going to read or worry about it anymore.  I know I need some more help and this is the next step unfortunately.  Another comment!!  THANK YOU!   I was not as smart / lucky as you to buy HGSI at $3 ; I gave it a lot of thought but just couldn't handle the risk  but I scooped it up as soon as the market opened the day Benlysta passing phase 2 was announced.  Thank you for the information on the FDA  estimated approval time line.  That even reinforces more that I need to get on MTX now because I can't handle the pain until the 3rd quarter.  But that would be great if they qualified for fast track.  As you said, it has been over 50 YEARS, if any drug should qualifies for fast track approval, a lupus drug should!

Another night of falling asleep on the couch around 9 once all the kids fell asleep and then waking up at 3 am.  My mind is not tired at all and surprisingly my body feels okay with my last pain pill at 8!!  I have been feeling a little better the last 2 days and the only thing I can attribute it to is I changed anxiety pills to Xanax so I have been less anxious during the day and added Flexural as a muscle relaxant.  With Flexural and Mirapex for restless leg syndrome taken at night, I am sleeping a little better.  Oh funny story. I went to a play with my MIL and SIL during the week and I had just gotten the flexural.  I can't make it more than a 1/2 hour through a movie without intense muscle aches from sitting in the same place.  I went to the movies for the first time alone with my husband in years on our last anniversary (Transformers, yes, I am such a boy's Mom and I spent the last 1 1/2 hours in intense pain and totally miserable.  So, back to the play with MIL & SIL.  We are all so excited to see this awesome play and I decide to take a pain pill and one of the new muscle relaxants on the chance it will prevent the pain from ruining my fun.  Very, very bad idea.  I ended up sleeping part of the first half and the majority of the 2nd half.  I kept waking up and trying soooo hard not to fall asleep again to no avail.  My sister in law even said I was  snoring a little!  I have to laugh but at the time I was upset, embarrassed, and hadn't figured out yet that it had to be the muscle relaxant.  My MIL spent a lot on the tickets, it was the first time in years that the 3 of us had gone out alone together and I fall asleep!  But she (MIL) was completely cool about it and didn't notice as much because I was angled more towards my SIL.  Oh yeah, I forgot to mention,  my luck, I was sitting BETWEEN them, haha!!

So hopefully this isn't a fluke and I am feeling a little better.  It would be nice to take a break from this flare I have had pretty consistently since my son was born 18 months ago.  Oh, my baby is getting so big,  I don't want him to grow up but  at the same time it is incredible to learn more of his personality,.  He is going to be quite a character, keep his parents on their toes, just like his older brother does.   I love my boys more than anything in this world and I am so blessed.  I was real achy today but I had promised my oldest he could go to the grocery store with me.  Whenever we go someplace just the two of us, we keep the radio off and just talk the whole time.  He says to me as we are getting out of the car at Walmart, I am so glad that we go to the store together so we can talk the whole time and then he took my hand without the ususal argument that he is too old and we walked into the store together.  It just melted my heart.  And it reinforces that it is QUALITY time that is important to kids.  It doesn't matter if I am too tired to get out of bed, we lay in bed and play flight if Mommy is slightly sick, read and color if Mommy is a little worse for wear and watch movies or tv when Mommy is really hurting and has 3 heating pads on her neck, her feet and her hands and can hardly think of anything but the pain and fatigue.  So then i snuggle with him while he watches his movie and Mommy sleeps.  It is all quality time and I need to stop feeling guilty.

Well. good night all and sweet dreams.  More Comments Please --- if you are reading and liking this, let me know.   I would love to hear from you!  And  to comment # 4 (yeah!) enjoy the HGSI ride. I will be thinking of you as it climbs and congratulations on your remission!  If you attribute it to anything, PLEASE let me know,  I would love to here more as I am sure anyone else reading would too.  I am very much looking forward to my own remission...I know it will come for me and all of you luppies out there.  Big, gentle hugs.

xoxo

Lupus Celebrity

I got my 3rd comment and this one came with some questions.   "How could we possibly cure this kind of disease? Any answers? I just want to be aware of this and in some instances avoid from having lupus."
 
Since there is no cure for lupus, in my opinion, we need to figure out why we get lupus before we can find a cure for it.

I have a basic understanding of the most accepted  theories for what causes lupus but I wanted to give you as detailed an answer as possible so I researched it a bit and this is some good informatiion on the suspected causes of lupus.

This came from the Cleveland Clinic:
 
What Causes Lupus?

The cause of systemic lupus erythematosus (SLE or lupus) is unknown. Finding the cause is the object of major research efforts.

Factors that may contribute to the cause of lupus include viruses, environmental chemicals and the person's genetic makeup.

Female hormones are believed to play a role in the development of lupus because women are affected more commonly than men. This is especially true of women during their reproductive years, a time when hormone levels are highest.

The observation that lupus may affect more than one member of the same family has raised the possibility that the tendency to develop lupus may be inherited. Having such a tendency, however, does not predict that a relative will develop lupus. About 10 percent of lupus patients have a close relative with lupus

They have a lot of theories but don't have anything definitive.  "Viruses, environmental chemicals, genetic makeup, hormones," they cover everything.  BUT I think the future is so promising.  In my opinion,  Benlysta will be approved this year and will do phenominal because all rheummy's will try their patients on it if they feel they qualify for it.  There has not been a drug approved for lupus in over 50 years.  Once Human Genome Sciences receives FDA approval and their stock jumps, yes - I own a little of it and it has been fun watching it jump  (HGSI is their stock symbol if you want  to check the company out).  I only have a little money in there (oh how I wish I had invested more but I still think it is going to jump again once they get FDA approval.  I should be saying if they get FDA approval but I don't talk that way.  There is too much riding on this for us luppies walking around immmunosupressed terrified of getting sick.  We need better drugs to help us get through the day and give us back a little of who we were before lupus reaked havoc on our life, our families, our  body,our spirit, okay, I'll stop now.  Again, I am not a doctor, but I think it only immunosupresses B cells instead of our whole body like the lupus drugs used today do.


Now for my opinion based on no medical expertise   If you feel you might be predisposed to SLE because someone in your family has lupus or you have some of the symptoms but not enough to be diagnosed, I would suggest ALWAYS wear SPF 30 or up even on cloudy days.  Only fake tans and when you look so HOT at 50 because you don't have lots of wrinkles, you'll be so happy you were vigilant in your younger years.  Get a healthy amount of sleep about 7 to 8 hours whenever possible..  Eat well and treat your body well, like that saying your body is your temple.  If you don't feel very good and can afford to, take a sick day or cancel on your friends, true friends will understand.  And if you feel tired to the bone, muscle weakness  (like it hurts to blow dry your hair or dress yourself or your kids), get rashes and/or sick when you go out in the sun, then I would meet with your doctor, discuss your concerns and ask him to run an ANA test and anything else he recommends initially.  I will post the criteria for diagnosing lupus either today or tomorrow which will be helpful too.  Thanks for the comment & questions, sweetie.  Feel free to email me lupuscelebrity@gmail.com or post any other questions.

 So anyway, once Benlysta is out and the majority of rheummies are prescribing it to their lupus patients and the company's profitability rises, their stock rises,  other drug companies will want a piece of the market .  These other drug companies will hopefully dedicate more $ to research and development so they can release the next big lupus drug, then the 3rd and on and on.  It is a huge market of people with lupus, mctd (mixed connective tissue disease), Sjogrens Syndrome, and fibromyalgia and many of these people have many lupus symptoms .   This is our year & our decade, my friends.  I even had 2 friends mention they saw a lupus commercial on tv.  I was thrilled!

Now whose going to be the first to subscribe so you are notifed when I update the blog.?  And please keep the comments coming,  I need them to mentally keep going with this thing.   I am tired all the time but I love sharing my life and lupus news with all of you.  But I have to know I am reaching people. I know, I am SO high maintenance, haha.  Sweet dreams.

xoxo

Lupus Celebrity

Well, I couldn't lower to .25 of prednisone today like I planned.  I was in too much pain this morning.  I will try again tomorrow.  I had insomnia again last night but instead of reading or going on the computer  I painted my nails and washed my face with a neutrogena microdermabrassion machine my husband got me.  It's called the healthy skin rejuvenator.  You can use it every 3 days but I am lucky if I use it every couple of weeks.  It says it is the anti-aging power treatment for wrinkles, pores, age spots and firmness. My malar rash is so much more noticeable for a day or two afterward but my skin and pores are so much clearer.  I hate blackheads so much and this is the first thing I have found that really helps keep them clear besides facials. And  I can't afford facials at the spa every month so this is the next best thing I have found...well, actually my husband found it.  He has been on very good behavior lately!

I also get pimples from prednisone and from my hormones in general.  I went to one of the top dermatologists in my area to talk about my malar rash and when he heard I have had the rash since I was diagnosed in 2005, all he wanted to talk about was my acne and giving me pills to treat it.  I was thinking, I take over 20 pills a day to manage my diseases and you want me to add another one so I don't have PIMPLES?!?  Do you see the rash all over my cheeks and nose?  Do you know that it is so bright most of the time that no makeup can hide it?  Pimple pills?  Please, that is the last thing I am concerned about!

Hardly anyone talks to me about my rashes.  My Mom said once that she gets so upset for me about them and doesn't know how I cope so well with them.  But my Mom is beautiful, looks a lot like Jackie Kennedy Onassis.  So for her she always put so much stock into her looks and it means a lot to her.  Me, I never felt that way.  I am not ugly, I have been told  before that I am  beautiful, pretty,  cute, etc. but she is one of those REALLY beautiful people, who just always was noticed for her looks.

But kids are the best.  We had my husband's cousins visit us and the little girl just stared at me for a minute one morning and asked bluntly, why do you have red stuff on your face?  It was just so refreshing because they are so innocent and honest. My rash was really angry that week and very bright.  I feel like telling people that I am not blind, I KNOW when my rashes are so blatant that you have to be blind not to notice it.  But no one says anything, they are afraid to hurt me I guess.  And ironically I feel so much happier when someone asks me about them or lupus.   Most of the time my voice gets shaky like I am about to cry while talking about my constant pain, fatigue, muscle aches, etc. but it still feels good to explain why I can't attend lots of events, why you never see me taking the kids to the playground or community pool or playing in our driveway like a lot of  other mothers do, why I can't go out in the sun and heat and why I cancel on people last minute because I am too tired, sick, or depressed and sick of being sick and tired.  It just helps to make them more aware of my struggles.  I cancel on people  a lot and I feel guilty, especially if they are someone who doesn't know much about lupus and how hard it is to get through a normal day when I am flaring let alone take a shower, put on makeup, put on any clothing fancier than my pajamas, get in the car and drive to them or clean up my house for them if they are visiting us and then to be social & upbeat.  On a bad day, my muscles are so weak that I can't even hold my arms up long enough to shampoo my hair and forget about a blow dryer.  Hence the new perm; no need to ever blow dry.

But back to people not talking about my rashes.  I used to act the same way when I heard someone died.  I would  avoid talking to people about their loved one's passing  because I was so afraid of upsetting them more.  And the same when I knew people whose children have mental illness, drug problems, etc.  I did not feel comfortable bringing it up and was scared they would not want to talk about it and I would upset them.

But then I watched a show on Oprah, I really love some of her shows, and the guest was Elizabeth Edwards who was talking about when her son died at age 17.  I am really paraphrasing here because it was a while ago and the lupus fog (my memory) is bad, but she was talking about people not knowing what to say when he died and how much she appreciated it when someone would bring him up and she could talk about him.  She said that her and a lot of other parents with the same loss biggest fear is that their child will be forgotten.  So when people talk to her about him and recall memories, she knows he is still alive in that person's heart and mind.  It helped me so much in my personal life.  Now when I am talking to someone who lost a loved one, I ask how they are doing and lend an ear for anything they want to vent, share, laugh about, etc.   There is always deep pain too but I can tell it still means so much that I brought it up and they can talk about their spouse, parent, etc.  Also, I know a family with a schizophrenic son.  I used to never ask about him because I didn't know what to say and didn't want to upset them.  The first time I saw them after watching the show, I just asked "how's **name** doing?"  I could see how happy they were to talk about it and they thanked me for asking.  Even though he was committed at the time and it was a really difficult period for them, they were so happy that I brought it up and we talked for a while and I asked questions and learned more about the whole situation.  It was really wonderful to see how much it meant to them so now I make sure to ask about him every time I see them.
 
That's how I feel about my lupus rashes, although obviously to a much lesser degree.  It is the elephant in the room that not many will talk to me about but they all are thinking about it (at least that is what I think they are thinking).  That's why kids are so refreshing.  The only thing I worry about is when another kid asks my oldest son, what's wrong with your Mom's face?  I am sure at some point, he will be embarrassed about my disease.  But teenagers are embarrassed about almost everything about their parents during some stages.  Oh well, that is 8 years away.   By then, lupus could be cured or advanced enough that I will be able to live a more normal life and hopefully the sun won't be my enemy.

Sweet dreams to all of you awake like me and reading this.  It is after 5 am and the pain hasn't stopped yet.  Once again, I fell asleep on to couch around 8:30, woke up at 1:30 from the pain.  I forgot to take my medicine before I went to sleep again!  It just sucks because then the pain gets ahead of me and it is so much worse and takes a lot longer to get to the point where I can function at all.  Right now it is a toe curled, teeth clenched pain with body aches all down my legs and feet and stabbing pain in my neck and mid back.  And I am down to 4 pain pills left, I can't fill my next prescription until Monday and I need 25 pills to get me through the weekend.   I am going to have to call my doctor in the morning.  And I was just there and he asked if I was going to make it through the month or did I need more and I said I was fine, ugghh.  So it is not an issue with getting it approved, just that some of the office staff that I don't know can be pissy and say they need 48 hours.  I am just going to have to tell them I will not be able to physically make it through the weekend if I don't get more today and if I don't hear from them go down there and wait to talk to the nurse.  Because I would have to go to the hospital if I was without pain pills for 2 days.  The pain is so overwhelming that some mornings and everytime I wake up in the middle of the night I cry until they kick in.  I just lay down in a fetal position and say in my head, "please God, please God, please God" over and over and over until the pain meds start working.  

WOW, I got another comment!  Thank you, thank you, thank you!!  Whose going to be next?  It is so nice to know I am not alone out here, typing away for nothing!  Whose going to be the first to SUBSCRIBE?!?  Come on, if I am going to be a spokesperson for lupus I need a big fan base!  This is our year and our decade, lupus is going to be talked about as much as other diseases, we are going to have new drugs and treatment choices and one day, someone will discover why we get this horrific disease and how we can go into permanent remission or be cured.  That is a sweet dream for tonight, what would I be doing right now if I was cured....good night all.

xoxo

Lupus Celebrity