Long Time No See or Hear...

Greetings Everyone!,
I haven't been to this forum in so long and it was always so helpful to me. Things have been a mess for me the last 2-3 years. I think the last time I visited here the rheumy put me on injections of Methotrexate for my lupus. I seemed okay, but as we lupies know we are never exactly "well", anyway I am not. I kept getting sick with pneumonia, bronchitis, pancreatitis, etc. So we stopped my methotrexate thinking it was making me sick, but after a year and over 6 hospitalizations my rheumy said its a long shot but let's test your igG antibodies, well low and behold not only did I have lupus, but I was deficient on total IgG antibodies and subclasses 1 & 2.... So we knew we could not treat my lupus unless my antibodies were getting treated which took another year and nearly my life... I had a port placed in my chest and was started on IVIG monthly, but kept getting sick ended up I was getting aseptic meningitis, but in the mean time which was just last Oct. 2011 I finally got to go back on injections of methotrexate, well that lasted for 3 weeks, because I got pneumonia due to antibody problem and IVIG not being done often enough. If you think finding a rheumy is hard try finding an immunologist it is nearly impossible! Finally found one for me at IU in Indy after going through bone marrow biopsy so now I have weekly infusions of Gamma Globulin SQ which requires 4 needle sites. I still am not well enough to have my lupus treated so needless to say I feel horrible all the time! I also had to have the duct to my pancreas opened, but that was nearly a year ago so back to struggling with that. I also of course have Raynauds and ended up losing the entire nail on the finger next to pinkie on right hand and no feeling in that finger. I also suffer from tremendous anxiety/ panic more than I ever did don't know why, but was told it is common in lupus and primary immune deficiency. I also found out that many lupus patients are missing antibodies as I was and pancreatitis happens with lupies. I feel lonely all the time, friends are non-existent and I feel hopeless. I wanted to say I always appreciated the straight forward advice from Bill and others here, because there is no "sugar coating" this horrid disease. I'm not trying to frighten any newbies, but they need to know that you might not have symptoms one day and the next its like they will never go away. I developed allergies to practically every medication... I so want to live, but at the same time feel like laying down and dying or giving up... Does anyone else have those episodes or am I losing my mind... Has anyone's panic escalated like mine has? I have Raynauds, but is it normal for my toes to be purple when not even cold or turn completely white in my bath? I know I've rambled on enough, but I need a friend.. I need to figure out a way to make money at home my finances are a mess and I want a puppy so I have a companion maybe that would help my loneliness , shoot I can't even find a puppy.. Anyway thanks for reading and hello to all those I've missed for a few years and welcome to the newbies..
Regards,
Cathy Williamson

Dear Cathy,
I too am sorry. I'm not a newbie to this disease but new here :)
I hear u @ all the meds & illnesses/allergies! Everytime I start an immunemodulator I end up w pneumonia or my liver starts failing! I'm afraid I'm just 1 of those patients that has to live w it & get fat & bloated w Pred! And btw, I would be SO SAD without my cat, Cleo, a plain-old rescue Kitty we got 3.5 yrs ago! She follows me everywhere..though lately that's only been from bed to bathroom! You NEED a pet! (Cats are much easier to care for & so loving!)
I'd be sad without the help of this website - THX TO BILL & JOY SOOO MUCH! I realize the power of the human heart & of a helping hand, wanting for nothing but to provide an ear & help!
Things have been hard for you, Cathy, but we are all here for a REASON..even if we cannot clearly see that reason! Your story makes me realize I have to keep going & that others have their own struggles! Your strength gives others strength!
I take Cymbalta which helps me w the anxiety & depression. Do you take anything? What @for RAYNAUDS? Pls hang in there! We are all here for you!

I have three kittys. They are my therapy when I feel bad.
When I get home after work I'm bushed and achy. Automatically they come one at a time to take turns to sit on my lap or climb up on my chair back. I relaxes me and helps my stress.

I'm in the process of being checked for a rare lung disease that goes with Lupus: Shrinking Lung Disease. I go for testing in April.