Newly Diagnosed

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
 

Posted by lupuscelebrity at 2/16/2010 9:13 PM
Categories: household organization, lupus
Tags: sle household organization support group lupus lupus newly diagnosed lupus
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