Copied Post From Barbara --
I'm sorry but I need to unload a bit. I HATE my QOL, I literally don't know how much more I can take.
I tried cutting my steroids back by 5mgs last week, and boy oh boy am I paying for it now. So today I increased them back up and will see what my Rheumy has to say on the 19th. I'm so frustrated with having severe Lupus and moderate RA. All the auto immune issues are just going down hill for me. I now have had 3 doses of the Benylsta and I've not noticed ANY GOOD results, but I have several of the BAD results.
I'm struggling with really bad insomina, I'm irratated a lot of the time. I've NEVER suffered from anxiety and now I'm dealing with that. I also am experiencing depression, I just want to crawl into a hole and just die. I will see my PCM on Monday, she upped my cymblata prior to starting the Benylsta. She also told me if I needed it she would give me Ativan for anxiety.
I am SO disappointed that I can't go ahead with the treatment for my warts. They have been on my left thumb for over 12 years now, my right thumb just recently started. I also have them growing on the back of my foot and on my belly. My L thumb is so bad it doesn't even look like a thumb anymore. I can't button my shirt, can't put in earrings, can't do anything that requires use of my thumbs. I'm just so so frustrated, I FEEL like drinking a bottle of vodka and hacking the thumbs off with my meat cleaver. I understand why they want me to wait, but it's like my black cloud NEVER goes away.
I received an email from the Dr I saw at NIH last night, the tone of the email makes me suspect that they really believe I have this genetic disorder. I already know that my MDS has moved closer to becoming full blown leukemia, IF it was caused by the drug I took to treat my lupus it's a lot harder to treat. If my MDS is caused from this genetic disorder, it will be easier to treat the MDS.
Today, I'm sitting here feeling sorry for myself and I know I shouldn't be, but I just can't help wonder what did I do in life to deserve ALL this crap. My back is soooooooo through the roof pain wise and the PM Dr is out on vacation until the 12th. My injection will be on the 13th. I know from yesterday's normal lab work I'm really anemic again and will be needing some blood soon.
I have wished for years to have research Drs look at me and figure out the odd symptoms I have. Now that I have that, I'm reeling, my hubby told me just a minute ago, "yes we wanted that, but with good results". We know IF I have the genetic disorder I will need a bone marrow transplant, but with my lupus, RA, and Fibro it's going to put me at a much higher risk. I'm afraid to ask what my odds are.
I'm sorry for complaining I know there are folks here that are so much worse off than me. I know I should be thankful that I'm still alive, but what I'm facing over the next few weeks feels like Mt Everest. I just don't know IF I can continue on. Thanks for reading this looong vent, I know you all understand the feeling of being overwhelmed and sick of being in pain 24/7.
I wish you ALL a good week and I hope you have low pain days. For those who have appointments and procedures I hope they go well, and have good results. Thanks for being there.
Post Edited (Barbara Lee) : 11/27/2012 5:01:56 PM (GMT-7)
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde