Sometimes I feel as if I can't complain around my family.. and although they're amazing, especially my mother dealing with me being so sick I still feel horrible for complaining, sometimes she feels like she can't complain about anything.. and I know that complaining to her makes her feel helpless because she can't do anything about it.
So I must say, I'm very thankful for this place, because as many people know that are in the same shoes.. doctors and people make you feel as if you're insane a lot, because you have so many things wrong with you. So the venting begins...
I'm 25 years old, and although I HAVE been sick since I was 13.. it's gotten worse lately, as I've stated before. All the doctors appointments.. never being able to work, and having no insurance but just now being diagnosed with something bad enough to get on disability for. Despite the fact that before I got dxed with lupus, I had A-fib, tachy cardia (which has now changed to SVT.. my heart rate gets over 200 at times), high blood pressure, Renal stenosis, Biliary C, horrid migraines (which I was told are lupus headaches, or headaches from FM) FM, (Which I was told that most people can't get on disability for because the symptoms vary so much, and it's really hard to have a definate testing for) Seizures (that they couldn't figure out, because my EEG and MRI's didn't show anything) an ovarian tumor, nueropathy..arthritis.. anyway you get the picture. I'm not on insurance, and I have to go to a free clinic for general practice and I have to pay out of pocket for all the specialists. It urks me when people say things like.. "You know, it could always be worse, and you should be thankful for what you have." I AM thankful for what I have.. I thank God everyday for my amazing mother who has always taken care of me.. but aren't we entitled to our bad days too? I know that nobody else understands unless they've been there.. which is why I'm very thankful for this place. The winter time is horrible. I'm having to use a cane.. and I feel ridiculous needing to use a cane at my age. Sometimes I can't get out of bed.. other days I don't feel like getting out of bed, but I do anyway. I feel as if I've never fully been able to experience life like most people. I've never been able to work.. dance.. do things that most people my age have been able to do. I get frustrated when people ask me what's wrong, I say lupus.. and they haven't a clue what it is.
Alright, I had to get that off my chest.. thank you for reading my venting.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.