Hi, I'm new to this forum or any forum for that matter...I've never felt the need to be a member of one until now.
I've been in tears for the majority of the day because I am at my breaking point. I am newly diagnosed...well, not even dx'd officially I don't think. After numerous blood tests, an MRI, and plenty of regular x-rays my primary doc and my pain management doc have both said they are 100% certain I have lupus and have referred me out to a rheumetologist who they say is one of the best in the area. But tha doc has to make the official diagnoses or whatever. He's 2 hours away and they cannot get me in until sept. 1 I am on a waiting list in case someone cancels..but still it's frustrating.
I believe I have had lupus for the better part of 2 1/2 years but doctors always passed it off as an infection or the flu; would give me antibiotics or flu meds and send me on my way.It wasn't until October of 2010 that I started feeling so bad every single day I decided to go back to the doctor and explain to her that antibiotics will make me feel better for a couple of weeks but then I'm back at square one and feel awful.
At first she said I had fibromyalgia and sent me to pain management. At first, I started feeling better. I was put on Savella and Baclofen and it was wow! I felt so normal for a matter of 3 or 4 weeks then flare up symptoms started creeping in again. Flu feeling; low grade fevers; throat and ears constantly hurting; muscles burning; bone pain; kidney pain; swollen hands and legs; glands in my neck swelling; difficult to walk...it just goes on and on and on. I told the pain management doc that and he added hydrocodone to the mix and changed my muscle relaxers. I still feel like crap. I can barely move most days, I can't think straight, I can't eat normally...sleep, well it doesn't exist for me really.
My job doesn't understand. I cry everyday when I get to work because I have to climb stairs to get to my work space (they have no elevator) Just the climb (yes, it's a climb to me. those stairs might as well be mt. everest) makes me so tired and causes even more pain. I call into work sick at least once a week because I just can't do it. The noise, the fast pace, the responsibility, etc. It's too much. They are threatening to take away my medical benefits if I don't work 40 hours a week even after I have tried to explain to them that I absolutely need the insurance to get better. It's one of those "but you look fine, you don't seem sick" things. Aaaaaarrrgggh.
I haven't had one day where I have felt decent in the past month and it's progressively getting worse. My lower back has been hurting so bad since last week; my insides feel like they are on fire; sometimes urinating is so difficult. Not painful I just can't go when I feel I need to. I have nausea all the time and it's gotten to the point in the last 4 days where i can't take any of my meds because I vomit them up every time I take them. I don't know what to do about anything anymore...I just feel like throwing myself off of a tall building most days. I have a son that I never spend time with because I spend any time away from work in bed.
I am truly at the end of my rope...and I still have to wait until sept. 1 to get some sort of relief??? You gotta be kidding me. I cannot do this anymore, I just can't. I am miserable, depressed, moody, I've lost friends over this because I make plans then break them because I feel bad, my son is worried all the time. My family doesn't understand....... it's the "well, everyone has something wrong with them nowadays and some people have it much worse. It's not like you're dying or anything." Wow, just wow.
I'm not sure how to deal anymore. Insight?
Sorry about the rambling. I haven't been able to form one cohesive thought for months now so I know...this probably doesn't make sense.