Basic "forget about it's"

I am now at the point where regular, run of the mill activities such as folding laundry, pushing a grocery cart, combing or washing my hair or cooking is almost impossible. THE PAIN IN MY SHOULDER IS SO HORRIFIC I LITERALLY WOULDN'T MIND HACKING IT OFF! I wish I knew why it was so bad. I have been on immunosupressants and anti-inflammatories far too long to allow for this kind of breakthrough pain. I've iced it for two days now and NOTHING!!! Not to mention the added 40mg a day in prednisone for 5 days after my release from the hospital just over a week ago. That alone should have at least taken the proverbial "edge off" of the pain. But no. I can't do AYTHING! I am right handed...this is completely debilitating! What else is there? Now, I'm noticing that deep right hip pain is returning and causing problems with my ability to sit, stand and walk. God just let them find the cure for this please!!!

A whole new level of activity.

I went to the E.R. a few days ago because as I walked into Walmart to buy some thread, I became short of breath and had an almost panicked feeling that each breath would be the last. The air was thick, my chest heavy and I began to get dizzy. I left Walmart and sat in my car for a few before taking myself to the E.R. when I felt it was safe to do so. When being evaluated by the ER dept triage nurse, he asked if  had any other pain at which point I realized YES...yes I do. I had pain in the left side of my chest a few days earlier and had been having severe pain in my right shoulder for three days straight which was now unbearable. Well, this being the Hospital that admitted me with my P.E. a year ago June, they were taking no chances and he said "I'm really concerned that you may have another clot my dear." So they took me straight back, inserted a slurpee straw sized I.V. into my arm and took my blood for a D-dimer test. Then it was off to the CT machine for me. In a nutshell, they found no clots in my lungs (Thank you God!) but, my D-dimer came back elevated .

D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low. In addition, it is used in the diagnosis of the blood disorder disseminated intravascular coagulation.^[1]

D-dimers are not normally present in human blood plasma, except when the coagulation system has been activated, for instance because of the presence of thrombosis or disseminated intravascular coagulation. The D-dimer assay depends on the binding of a monoclonal antibody to a particular epitope on the D-dimer fragment.

In short, the ER doc said that he'd almost put money on me having "that clotting condition" that Lupus Patients often develope. GREAT! My rheumy tested me for APS and I was negative! But is that th same thing?

They gave me a horses dose of steroid injection, a breathing treatment, a shot of dilaudid for my shoulder pain and that was that. They sent me home with a prescription of 5 days taper of prednisone and Oxycodone so I may sleep. Yeah right!  Well, if my shoulder pain had been related to my inflammatory condition whatsoever, the steroids or the many anti-inflammatory drugs I am on (Imuran, Plaquenil etc) would have knocked out the pain and helped me function. BUT...I have no use of my arm at all. It hurts so bad you can't even touch it! Now, here I sit at 1:00 am unable to sleep with a fever of 99.4 degrees. My breathing is still not good though my oxygen sat showed normal (which I totally don't understand) and now I'm running a fever? Hmmm....Autoimmune fever should've been knocked out by the prednisone as well. IDK. But I've got a real bad feeling about this. I'm at the mercy of the doctors and that terrifies me!

Imuran is not working but damaging my liver I guess.....

So, I guess soon enough it will be back to the drawing board. I received my lab results today from my July 5th draw and once again (Just like with the Methotrexate,) my ALT (SGPT) or "liver enzymes" are HIGH, Billirubin is lowest side of range and SGOT is highest side of range. When discussing the next step with my rheumy last, he said the next would be Cytoxin infusions. Nice :(  So, I have to call him tomorrow morning to get a stat lab for re-check and discuss future plans I guess. I was already increased due to ineffectiveness, and now i'm in excrutiating pain all over...(back, hips, tail bone, collar bone, shoulders, neck, head, hands, feet) and I can't sleep! In short, I feel like i've been hit by a Mac truck.  Not happy. Tired of trial and error all the time. Oh...and today is my birthday......yippeee :'(

~Heidi