Thank you guys so much for your help and concern. I actually just got on charity care for a year at our local hospital. Not a good hospital but it is something. Already get free meds, but it is very limited. The stuff like prednisone and cellcept I have not been able to get. I gather it is expensive. That is why they only treat each symptom as they come up. The patient advocate program is something new I have not tried, I will give that a shot. I need an advocate.
My mom's side of the family lives far away and haven't been able to help in any way. I do live in my mom's home so rent is eliminated - I basically have enough $ for food and bills, but not much more. Dad side avoids me but lives close. They don't want to get involved and when I ask for help all I get are excuses why they can't - you know bought a 1/2 million dollar home, going to Hawaii, Australia, etc. Important stuff, you know. Need-less-to-say, it has always been this way and I am not exactly close with that side of the family. My entire family is great at avoiding issues like this. I have pretty much fought everything on my own, I don't know much else. This is kind of a first for me to talk with people about my illness and ask for assistance. I was raised to never talk about problems and to never need for anything. Wierd huh? I wish I knew everything and could do everything, but it just isn't possible any more.
Tried Social Security 3 times. Never heard from them the last time - it has been over 2 years now. I don't have much energy but I'll try to get down there to check things out. Can they help people temporarily? That is what I would like. I really love to work and have a great part-time job. I would hate to lose it. May not have much of a choice soon though. Whatever is going on is really wiping me out.
Thanks again for the help and hearing my tales of woe. You are all in my thoughts and prayers - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.