Sorry to complain but I am at wits end!!! I am not doing well, dropping weight (yes I know I needed to lose, had gained so much) and the hematologist will not do anything to help my Porphyria, so I fired him!!!! I am looking for a new one now. In the mean time, I am breaking down and calling the Rheumie, and the Cardiologist. Things are not right, and I know I will be in Limbo with the COBRA insurance so trying to take care of now. The Porphyria is attacking my stomach, and I don't know how my liver is. I am on the Vitamin D and Plaquenil, but the Plaquenil makes the Porphyria worst. Everyone who doesn't get it is on my but for how I am eating but I cannot tolerate gluten. I cannot handle starchy carbs much but need them to control the attacks. I cannot win. I am having the Lupus and Porphyria flare which means hey lets kick the fibro into full throttle!!!!!. My friend went to rub my shoulders and said he had never seen muscles so tight, even after working out. Sorry to complain, but if you look up the information Souls posted on this dam disease, it is not good. I am considered one of the extremes in this as my labs change frequently, like daily with the ANA etc.
I remember when I went to new Rheumie he started to think I was extreme in how I felt but with the news that the Porphyria is here, he is awesome and supportive. My old doctor told me I didn't have Lupus, said I could tan and now I am jacked up!!! The rest of my life I will live like this Ok, I am having a pity party, sorry I am trying to keep my spirits high, I just get angry at times. Everyone says I should be over it but when you know why you ended up like this, it just gets to me sometimes!!! But you know it is bad when they say they you have one of the hardest combonations to treat.
Ok, so I am making all the necessary phone calls, and pray/or good thoughts that I get the Hematologist and the treatments that I need. If I can see this doctor this would be one of the best things that could happen, as they are a bit familiar with this illness. He has to gather my records for first and will get back to me. Sorry to go on, just sick of it being one thing after another, the heart, the liver, anemia, iron overload, etc. I will let Bonnie or Wombles Mum know if I am in the hospital so you all know why I am hiding.
Thanks for listening,
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescript
ion 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.