Long Time No See or Hear...

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Regular Member

Date Joined Mar 2005
Total Posts : 140
   Posted 1/27/2012 12:15 AM (GMT -6)   
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..
Cathy Williamson

Forum Moderator

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/27/2012 11:23 AM (GMT -6)   
Oh Cathy, you've been having such a tough time. I'm so sorry to hear that. I had written a long reply but my #%@* computer lost it. So I'll make this shorter. I hope you're seeing a psychiatrist. I've seen the same one for 7 years for depression & anxiety. Trouble recently cause I was getting all my "food" through pic lines in my arms 10 hours each night and cellcept 2 hours each day for 11 months. Couldn't take any oral anti-depressants..withdrew & quit talking to my few friends. 
Pic lines, ports..I hate those devices permanently inserted- they're so ugly. I had surgery this month and am getting weaned off all my pic line meds. 
It sounds like your pancreas is working and that's a huge factor. Gotta keep the organs working.
I have 2 cats, a dog and other small pets. Cats are much easier to care for than dogs if you aren't allergic. Clean the box once a day as opposed to walking the dog twice a day. Although with a small toy dog you can potty train them to go on wee pads (I suggest) an extra large pad holder too. Regardless cats do okay when you're away for a few days while dogs can go crazy & distructive. Perhaps you have family who could take the toy when you're in the hospital?
Anyway, I'm so sorry you've been so sick and I hope you get back to our "normal" lupus state soon. Love, Butterflake aka Donna

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/27/2012 10:07 PM (GMT -6)   
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!
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 1/28/2012 9:20 AM (GMT -6)   
You've found the best place for friends, for sure. I can relate. After 3 months of 3 antibiotics, and high dose prednisone tapers, I feel like a bloated toad on anabolics. I am sorry you've been through such awful times. I have two little schnoodle mutts, and a cat. I have been so grateful for pet therapy. Trying an antidepressant and getting a little dog AND a kitten are my recommendations. Wee wee pad and crate training helped me alot. I can't walk my dogs, but a small fenced area off my back door allows me to let them out to potty. I am sorry about your budget, I am blessed by SSD and a pension, medicare starts in Dec. All our lives have a purpose and a reason. Hugs your way, and if you are close enough, I will bring you a kitten, litter box, flea med and catnip mouse!
hugs and prayers your way,
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U, Calcium, Flector patch prn, Ambien and Elavil every night. Advair, Albuterol and DuoNeb inhalers.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/28/2012 9:56 AM (GMT -6)   
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.
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