Hello to All!
I am new to WHL. I am hoping that by having other people dealing with the same symptoms or similar ones as myself then maybe I can feel less crazy. Even to have people to talk to who understand how I am feeling would be a blessing. Sometimes I wonder can I really have all of these issues, I am only one person. I was first diagnosed in 1985 with JRA (I was 1) but since then rheumatoid arthritis and Lupus SLE. Over the years I have had flare ups that lasted one to several weeks, the longest was three months in 2004. Since December 2010 I have felt myself gradually weakening, since April 2011 I have been unable to participate in average daily living.
Some of my daily symptoms include; incapacitating joint inflammation and pain (knees, hips, ankles, feet, wrists, hands, shoulders and my jaw), Extreme fatigue (I sleep most days 20-22 hours), dizziness, facial numbness, numbness in my hands, double vision, dry mouth, daily fevers, paleness, rashes, hives, blisters, ulcers in my mouth, nose, and ears. My scalp in covered in sores. Overall I feel constant pain, I feel weak, shaky, and tired. I feel useless.
I have been off work Since April 2011. I have had to start asking my family for help. I hate having to ask them for daily assistance; even for bathing. It is humiliating. I am so weak and swollen most days I cannot raise my arms to wash my hair, I am very lucky that I do live close to my family and my wonderful mother has been helping for my care, with laundry and other household chores. When I leave the house I keep having to use a wheel chair or a cane, my legs swell so much I can't fit them into a pair of pants or even move them. Luckily I do not get out often.
Since I have been taken off of work I applied for disability through my insurance company and had been denied. I appealed their ruling and again they just notified me I was denied again. They said that my medical records do not substantiate a flare up and the prevention of doing my job. They say there is no significant evidence of RA since 2011 - current date. I kept asking what they needed to prove that I was indeed in a flare up and they said blood work, but no matter how swollen I am I never show inflammation in my blood. They always have to perform an arthrocentesis (where they remove the fluid from my joints) and a bone scan through nuclear medicine to confirm it is inflammation. I have had these tests performed before and the fluid they tested from my knees showed inflammation and the bone scan showed all my joints were inflamed; joints I didn't even know were swollen! But this is not good enough. They say it has to be in my blood. I am so upset with their decision, I tried explaining that flare ups are not solely based on blood work its based on physical findings, the presence of inflammation (My legs are huge and it is clear they are very swollen), fevers, rashes etc but they could care less. I have no idea what to do, or where to go. My livelihood is at risk, I have bills waiting to be paid. If I could go to work I would be there.Constantly sleeping because you have no choice and not even being able to help yourself is not fun. It is a nightmare.
I am extremely stressed, overwhelmed, and find myself hopeless. I feel disregarded and insignificant.
I am trying to stay positive and tell myself everything will eventually workout but I am finding it difficult.
If anyone has any advice I would love to hear it.
Thank you! I look forward to being part of the WHL discussions. Sending healthy days your way.