lupuscelebrity.com

Summer's finally, completely over here in Florida! Let the good times roll!!!

lupuscelebrity — Wed, 02 Nov 2011 11:03:38 GMT

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

Goodbye Summer, Hello Fall. We survived hibernation!

lupuscelebrity — Sun, 02 Oct 2011 11:35:16 GMT

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.

Hello Strangers

lupuscelebrity — Sat, 17 Sep 2011 08:51:12 GMT

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!!!

Benlysta: Is It What We've Been Waiting For?

lupuscelebrity — Thu, 10 Feb 2011 14:46:00 GMT

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.

Lupus Is Good For Your Career!

lupuscelebrity — Sun, 16 Jan 2011 08:18:00 GMT

>

> 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

lupuscelebrity — Sun, 16 Jan 2011 01:51:23 GMT

~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~

Happy New Year!

lupuscelebrity — Mon, 03 Jan 2011 08:23:00 GMT

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.

I'm Here!

lupuscelebrity — Thu, 09 Sep 2010 10:28:44 GMT

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

So Happy I Look The Way I Feel

lupuscelebrity — Mon, 02 Aug 2010 05:10:00 GMT

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 Releasing Lupus Song!

lupuscelebrity — Sat, 10 Jul 2010 06:18:00 GMT

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

Lupus Saves Snoop Dogg's Marriage!

lupuscelebrity — Thu, 08 Jul 2010 18:23:00 GMT

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

Terri Seymour Has Lupus In Remisson

lupuscelebrity — Sun, 04 Jul 2010 20:59:04 GMT

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 Hear You!

lupuscelebrity — Fri, 02 Jul 2010 06:26:00 GMT

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

Lady Gaga talks about lupus with Rolling Stone

lupuscelebrity — Fri, 02 Jul 2010 05:20:00 GMT

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

Lady Gaga Lupus Charity

lupuscelebrity — Wed, 23 Jun 2010 11:58:18 GMT

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

Comments

lupuscelebrity — Wed, 02 Jun 2010 03:09:00 GMT

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 Tests Borderline Positive for Lupus...what does that mean?

lupuscelebrity — Wed, 02 Jun 2010 02:02:00 GMT

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

Does Lady Gaga Have Lupus?

lupuscelebrity — Mon, 24 May 2010 02:35:00 GMT

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;

“What’s the nearest you’ve ever come to death?” I ask her. “Do you have any recurring illnesses?”
She goes oddly still for a moment, and then says, “I have heart palpitations and… things. But it’s OK. It’s just from fatigue and other things,” she shrugs, before saying, with great care, “I’m very connected to my aunt, Joanne, who died of lupus. It’s a very personal thing. I don’t want my fans to be worried about me.”

Her eyes are very wide. “Lupus. That’s genetic, isn’t it?” I ask.
“Yes.”

“And have you been tested?”
Again, the eyes are very wide and steady. “Yes.” Pause. “But I don’t want anyone to be worried.”

“When was the last time you called the emergency services?” I ask.
“The other day,” Gaga says, still talking very carefully. “In Tokyo. I was having trouble breathing. I had a little oxygen, then I went on stage. I was OK. But like I say, I don’t want anyone to worry.”

Lupus is a connective tissue disease, where the immune system attacks the body. It can be fatal – although, as medicine advances, fatalities are becoming rarer. What it more commonly does is cause heart palpitations, shortness of breath, joint pain and anaemia, before spasmodically but recurrently driving a truck through your energy levels, so that you are often too fatigued to accomplish even the simplest of tasks.

Suddenly, all the “Gaga cracking up” stories revolve 180 degrees, and turn into something completely different. After all, the woman before me seems about as far removed from someone on the verge of a fame-induced nervous breakdown as possible to imagine. She’s being warm, candid, smart, amusing and supremely confident in her talent. She’s basically like some hot, giggly pop-nerd.

Of course, she hasn’t said, outright, “I have lupus.” But the suggestion throws the whole previous year – being delayed on stage, canceling gigs, having to call the emergency services – into sharp relief.

Gaga is certainly very affected by her aunt’s demise: the date of her death, in 1976, is woven into her Rilke tattoo on her arm. When I ask her if she ever “dresses down”, she says the only thing remotely “dress down-y” she has is a pair of pink, cotton shorts, embroidered with flowers, that once belonged to her aunt.

“They’re nearly 40 years old,” she says. “But I wear them when I want her to protect me.”

And earlier in the article, some more things I found pertinent:

But still these rumours persist – of collapses and neuroses. You are, after all, a 24-year-old woman coping with enormous fame, and media pressure, on your own. You are currently the one, crucial, irreplaceable element of a 161-date world tour. How do you keep depressive, or panicked, thoughts at bay?

“Prescription medicine,” she says, cheerfully. “I can’t control my thoughts at all. I’m tortured. But I like that,” she laughs, cheerfully. “Lorca says it’s good to be tortured. The thoughts are unstoppable – but so is the music. It comes to me constantly.

Her fans are infamously, incredibly devoted – as she is to them. She calls them her “Little Monsters”. They draw pictures of her, get tattoos like hers, weep when she touches them. Her den-mother championing of “all the freaks” (fat girls, gay boys, lesbian girls, Goths, nerds, everyone who gets picked on at school), allied to her global pop juggernaut, makes her relationship with her fans intense. When you watch her with them, you see that culturally, what she’s doing is… providing a space for them. Giving them somewhere to meet.

OK, back to me. Oh my gosh, could it be that one of, if not THE biggest, performer right now could have lupus?  Lady Gaga, if this is true, I am so sorry that you have to join us in living with this horrific disease and at the same time, I am also excited because if it is true, you would be the best thing to happen to lupus awareness eve,r I believe. As the journalist describes you above as a den-mother championing all the freaks and the devastating loss of your Aunt to lupus makes me so confident that if true, you will admit soon that you have lupus and then start championing for people in memory of your aunt and all the lupies out there desperately needing our disease to get more press, awareness, charitable donations and research and development dedicated to finding a cure for this disease. Also as a proud feminist, knowing that 90% of people diagnosed with lupus are women, you can further champion women's rights. No new drugs for lupus for over 50 YEARS and now there is finally one that is awaiting FDA approval but was shown to have no medical benefit after 2 years? I have avoided posting on this topic because I am just not ready and feel I need to read the whole report before I comment on it but from the basic overviews I have read, Benlysta was shown to have no medical benefit after 2 years of use. Yes, it is still progress for us because if a new medicine will give us a good 2 years most of us would jump at so it is progress but it is STILL NOT ENOUGH. Lady Gaga, if you do have lupus, we need your voice and celebrity.

I am going to start researching the heck out of our Lady Lupus potentially, lol. I love her songs but I want to listen to her whole albums and read past interviews, etc. I will post more as soon as I know more.

My PALs, this could be huge for our disease. Obviously, I have always known we need a celebrity spokesperson hence the start of my site and I always hope it is a major star so if she does have lupus, we have an unbelievable spokesperson who can have such a huge impact.  I wouldn't wish this disease on anyone in the world, but reality is lupus does not discriminate.  It affects the famous, the rich, the poor, everyone. And it is long overdue for more celebrities with this disease to publicly acknowledge it and then discuss it openly as much as possible to raise awareness.

I really believe from what the journalist wrote, that if she had outright asked our Lady if she has lupus, she would have answered her. So, if for some miraculous reason you happen to stumble onto this blog, I am asking on behalf of the millions of people who have this disease and in memory of all of those who have died for this disease. Lady Gaga, do you have lupus?

If you want to read the whole article, click here. I am going to start researching and will update everyone soon on anything I can find. And of course, if Lady Gaga does have lupus and admits it she will have a whole new fan base because we lupies and pals need to support each other.  I will absolutely buy every album she sells and go to her concert anytime she is in town and I can get tickets. The same for Seal. We as a lupus community need to band together, as the LFA promotes, to support celebrities that have the courage to "come out." More to come...stay tuned, lol

xoxo

Lupus Celebrity

Painful Awakening

lupuscelebrity — Mon, 17 May 2010 14:42:00 GMT

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

Way To Go, Seal

lupuscelebrity — Sun, 16 May 2010 15:08:52 GMT

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

lupuscelebrity.com

Summer's finally, completely over here in Florida! Let the good times roll!!!

Goodbye Summer, Hello Fall. We survived hibernation!

Hello Strangers

Benlysta: Is It What We've Been Waiting For?

For more information on Benlysta, please see my post Details On Benlysta published on 2/16/2010

xoxo

L.C.

Lupus Is Good For Your Career!

Dance Like No One's Watching

Happy New Year!

I'm Here!

So Happy I Look The Way I Feel

Snoop Dogg Releasing Lupus Song!

Lupus Saves Snoop Dogg's Marriage!

Terri Seymour Has Lupus In Remisson

I Can't Hear You!

Lady Gaga talks about lupus with Rolling Stone

xoxo

Lupus Celebrity

Lady Gaga Lupus Charity

Comments

Lady Gaga Tests Borderline Positive for Lupus...what does that mean?

Does Lady Gaga Have Lupus?

Painful Awakening

Way To Go, Seal

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

Benlysta published on 2/16/2010