I have been thinking about
this for a bit. Re-introducing ourselves as members to one another, our lives, and how we were dx with this disease and how it affects us daily. I thought it would fill us in as how we were and how we are affected with this illness. I am 32 was diagnosed when I was 26. As a child I suffered horrible growing pains and migraines after sun exposure. I did not easily burn, but did tan rather quickly. At 26 I had gone tanning and then suffering psychosis, delussions. I wanted to end things so I checked myself into the psychiatric unit. After about
5 days I was diagnosed with PTSD. I followed up with a Psychiatrist who suggested I see a Neuro for my recurrent migraines. Later the Neuro, who was awesome started pulling me off my Psychiatric meds and told me he thought I had Lupus. I had been brushed off by doctors who said it was all in the head. Well, it was but due to a high ANA. He sent me to a Rheumie, who confirmed I was a very sick young lady. I was diagnosed with Myalgias, SLE, Sjogren's Syndrome, and Rheumatoid Arthritis. I had no idea what I was in for. I joined the Lupus Foundation, bought books on Sjogren's and joined the Arthritis Foundation. I was scared but stayed positive. Meds I was put on was Plaquenil 400 mg and Celebrex. The plaquenil made the psychiatric stuff worst and flared me worst but after a few months things settled down. I lost weight due to the Plaquenil and felt much better. I still had joint pain and muscle pain but not like previously. 2003 came around and the psychosis was back full force after taking the med Strattera for my ADD caused by the Lupus. I would panic and freak out over minor things. I had no idea what was in store for me. I was told I did not have Lupus but some type of auto-immune problem. I was told I could tan as well. I went tanning in March of 04 to get ready for an art show. I developed tachycardia, adrenaline problems, high ANA, rashes, allergic to all things, severe sun sensitivity, etc. No one could figure it out, except that I did not have cancer. No one checked my liver, my pancreas etc. By summer of 04 I was barely 100 lbs and skin and bones. Every time I ate I had severe rapid heart beat and adrenaline rushes. I had lost my memory and was shockingly
depressed and angry at the world. I had seen over 30 doctors since then. I cannot tell you the bull I heard of it all being in my head. I would get rapid heartbeat just from sun exposure. I had been put on so much allergy meds and the pain was unbearable. Later we found out that I had Porphyria. All my symptoms fit. I had this plus the previous diagnosis. I am literally allergic to the sun with three illnesses that cause the sun sensitivity. The lupus, the Sjogren's syndrom anti-body RO/SSA which causes sun sensitivity and the Porphyria. We do not yet know what kind of Porphyria I have but have been able to rule out some. I do not have the cutaneous because if I did the Plaquenil would correct the sun sensitivity. It is either Corpo or the Variegate form. I have to live in a fairly hypoallergenic environment, and must avoid many foods. I am allergic to everything lol, like alot of us are, suffer from asthma and lung problems, must watch my liver, go from anemia to iron overload LOL, and this one is good. The Lupus meds make the Porphyria worst.
So my life is complicated. I live literally in the dark, go out at night, and know to watch meds that will make me sun sensitive. I love the spring through fall, because I can see daylight later in the day, but know I will pay. Winter is terrible for me with the joint pain. I have severe muscle breakdown due to the illness and severe Vitamin D deficiency. I may also be Vitamin A and K deficient and have to watch my kidneys due to the Vitamin D. I eat organic, when I eat. I cannot have alot of protein due to the Porphyria and Lupus. I eat mostly raw foods, and have to keep a medium to high sugar intake during attacks. I check my glucose on the days that are bad so I will not develop diabetes. I sleep alot, and am working on remission. I plan to ask for a bone scan, and test the Porphyria theory with the Plaquenil with my rheumie to see if the connection with my Porphyria flares is with med. I have Epilepsy as a result of the Porphyria and Lupus, either sleep alot or do not sleep at all. When lack of sleep and flares, my glucose constantly falls and I have mini seizures. I have to avoid stress at all costs. I have been falling lately. I also just moved closer to the hospitals, my job and my friends near the Art Community to be easier for me. My new apartment does have an elevator but I make myself take the stairs except with groceries.
Life is complicated. To go out I must be home by 830am and cannot go out until 6pm or sometimes later. I have tinted windows on my car. I cover up constantly, wear baseball caps to work LOL, and still flare from the Florescent lights. I have blisters on my cheeks now, so no blush required. I also swell and take herbs to control the edema. I do push myself to get up and exercise, although the past month has been rough, I still push. I am falling lately but take it in stride. I do wear knee braces and sometimes I feel like a cane would be helpful but have not yet gotten one. My pain levels are never below a 5 but most days I can cope until they are an 8. I cannot take alot of pain meds or other meds like most people due to the Porphyria, so my care is more complicated. I see many doctors, my PCP, Rheumie, Endochronoligist, Psychiatrist as needed, Neuro as needed, Cardiologist, Dermatologist, Allergist/Asthma, Opthalmologist, and Adult Genetics doc.
Allergies include meds, like Penicillin, Sulpha, Cephalasporins, Mold, Artificial dyes, Pork and Pork derived drugs, dye used for contrast scans, Multiple chemical sensitivity, etc.
I did not post this to complain but to share how my daily life is. I hope this will make someone feel like they are not alone too.
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.
Post Edited (Leta) : 6/2/2007 3:30:28 PM (GMT-6)