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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/21/2013 12:33 AM (GMT -6)   
Well it's 2:30 in the morning and I can't sleep, I'm hurting to bad cry. I have to say that I'm totally miserable, ever since cutting my prednisone back and still haven't restarted my injectable methotrexate my flare is terrible.

I see my Rheumy on the 6th of May. Hopefully, I'll be back on my MTX then. My anemia is really bad and I'm hovering just barely above my cut off point for a blood transfusion. Tried to make an appt to see my oncologist and he's already booked for May devil. Don't care for all the changes in military healthcare. My vitamin D levels are finally normal and I can get my reclast infusion, but not till June 7th. nono I'm gonna keep breaking bones, I can't believe I have to wait till June.

Finally, the word from NIH is first my body isn't responding to accupuncture at all. The Dr feels my lupus is so bad skull that he can't counteract the inflammation that's in my body. So he's suggested that we stop the treatment, BIG BUMMER. NIH wants me to do a refresher course on biofeedback to help deal with my pain. Like its really gonna help, been doing that for sometime now.

As far as the thought that I have an immuno deficiency disorder in addition to my lupus/RA. The Dr TOTALLY thinks this, but she's not sure which one. So for now I sit and wait, she said they will call me in if they need more tests run, but for now she can't help me.

Lastly, my bone marrow biopsy has them a bit stumped. They found that both in my bone marrow and blood samples that my T cells are cloning themselves, which isn't a good thing. Some of my B cells are doing that too. She said if it were just my B cells doing this, they would say I have multiple myeloma, but since T cells are involved they want to wait and see. So this means I have to go through a repeat bone marrow biopsy EVERY SIX MONTHS nono nono They will be watching to see if I'm going to develop full blown lymphoma or leukemia.

I have to say I'm VERY disheartened, I hurt 24/7 at close to a 8 on the pain scale daily. My lupus is flaring, my FIBRO is bad since comming of the muscle relaxers, I'm stiff in the ankles that I can only shuffle along. They think I'm most likely gonna have full blown cancer in the next 1-2 years, but want to wait and see. I just don't think I can even face the thought of living till I'm old, IF that were to happen. My QOL is totally gone and I just don't know what to do it anymore.

Well, that's the update, I was really hoping that NIH would have some sort of solution for me, I guess it's just not meant to be. My black cloud is still holding strong over my head, nothing EVER seems to go my way sad

Hoping all of you are snuggled up in yor beds sleeping, hope you have a nice day and enjoy your weather. Thanks for listening don't know what I'd do w/o my lupus family.

Hus,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/21/2013 10:13 AM (GMT -6)   
 
Hi Barbara,
 
     My heart aches for me whenever I hear how difficult life is for you.  But you area such a trooper!!!  You always have kind words for the rest of us, even when your journey is so hard.  I wish I could beam myself up from here in Northern California and travel to where you are, with the intent to hold your hand and tell you "I care."  I am sending you a gentle (((((((((((((Hug))))))))))))))))) on this foggy morning.
 
Love, Laura

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 4/21/2013 11:42 AM (GMT -6)   
Gentle hugs sent your way!,, you are truly amazing to be going thru everything and still care about others. Only a true angel has a heart like yours . <3
Love, Lori
Dx with Lupus Feb 2012, Antiphospholipid Syndrome, Lupus Anticoagulant , Fibromyalgia , DDD

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/21/2013 3:32 PM (GMT -6)   
(((((((((((((((((gentle hugs)))))))))))))))))))))

I was awake in bed last night trying to get comfortable when you wrote this. I'm sorry you're having so many troubles.
I hope the answers and relief will come soon for you.
Hang in there brighter days are coming.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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