How did we do it? We made it through the Christmas madness and we are still intact…. I cleaned my house for this? Why do we freak out each year and stress and clean, clean, clean when it is over in a blink?
I don’t know about you but next year I’m putting an angel on top of the lamp and calling it good.
I applied for SSI, SSDI earlier this year. I was told by everyone in the know (and even a government agency) that I would be turned down the first time no matter what. They were right. It took two months and I received a letter explaining that I was not sick enough to qualify. It stated that I was able to work.
At this point in time I was told that I had Lupus (by the first doctor). This is common when it comes to figuring out autoimmune diseases; so many of the symptoms overlap, and there is no one test to find out what the heck it is. It’s a hurry up and wait game. When I received the first rejection letter I had started the prednisone but not the plaquenil yet and I could hardly use my legs. I walked like a slooooooow humped over robot, complete with old people grunts of pain. I had to use a walker and the pain was unbearable. The fear of Lupus and all that it entailed was unbearable. Back then, everything was unbearable. I was having night sweats, fevers, my hands would swell up like baseball mitts and split open in my sleep, I was confused, had head pain like I’ve never experienced before, and had days where C had to help me into the shower on a shower chair and I couldn’t lift my arms above my head. Non-stop pain and my quality of life was almost non-existent, and I could work. sigh.
I was told to hire a lawyer and start the appeal process. They told me it would take about 2 years. I lost my job after being sick for 6 weeks, when it hit me, it hit me just like that~bam. I had left my detox unit job for a full time at the immediate care just 2 months before I got sick so I didn’t qualify for FMLA. I was working both at the same time, but chose to go full-time for the better benefits and the day hours. Had i stayed where I was I would have qualified.
I applied for state medical help and was turned down because they said I was disabled. So I applied with disability and was told I was not disabled. I have been without insurance or a job since July of 06.
Ok, there’s some background on my story. I found this article in the New York Times and thought it was interesting and shareworthy.
I have been having a ‘sick day’. Been in bed most of the day and just got up and started perusing the internet. I came across this cartoon and thought it was funny. I recently read a story about a guy who was fired after he called into work sick and then posted pics of himself on his facebook partying in a fairy costume complete with makeup.
Good thing I’m already fired and I can post whatever I want, he he he
There are so many really informative videos on Lupus out there that I’ve found and not much on Rheumatoid Arthritis. That’s my new tentative diagnosis. I got my shot of methotrexate today and that always makes me feel so sick and sleepy so I finally got some sleep!!! Yay!!!!! So after I woke up I decided I would link a video about RA here for some info. This is the best one I could find here.
I’m going to do some more searching later to see if I can come up with something more entertaining, woo hoo!!! Let’s have fun with Rheumatoid Arthritis!
I went to see my new doctor today and did as I was told by my rheumy to let her know about these new symptoms. She ignored them. She gave me a pap and pelvic, wrote me a referral for a mammogram and a referral to get an x-ray on my right leg because that’s the one that hurts the worst. I was worried about a blood clot, she is looking for an injury. How could I have injured it in bed? I’m practically bed-bound from all the pain lately. I then found out the radiology department is the one that sued me when I couldn’t pay my bill in full in their time frame and they locked down my checking account. I almost laughed, it just capped off a totally wasted trip of time and money. Going over to the window to pay the bill I see that it’s $200 and I questioned it. “oh” she said “we gave you the discount it was 361.” WTF?
She told me she would not take on my chronic pain management or my depression and anxiety. Which these things all stem from my autoimmunity so what the hell is she good for? I guess just a pap where I could have gone to the county and paid a lot less. sigh.
So here I am at almost 3 in the morning whining about my day. I took my Ambien at midnight, but it hasn’t worked these past three nights because of the intensity of the pain. I give up.
Tomorrow will be a better day. Amen.
Have you ever tried social networking sites? I started out with a lupus support group when I first got sick. It took me 2 months to write my first post. I tentatively wrote with a question of which I had a million. I got a lot of responses and immediately forgot about the site. I was sick. I was scared. I was completely overwhelmed. One night I was in incredible pain and I wrote asking for some moral support. The response I received was overwhelming. Somehow I had found the place that would ultimately save my life and my sanity. I made “friends” with dozens of wonderful women from here to the East Coast to the Netherlands to Australia and Ireland too. I learned so much from these women. I learned to be my own advocate when it came to dealing with doctors, how to do research from reputable sites, how to speak up for myself. I lost my best friend when I got sick and I found so many new ones in cyberspace. A few of these women I consider to be my ‘best friends’ and we’ve never met in person. The power of social networking is unbelievable.
I woke up today and realized I couldn’t move my legs. I waited for a while before I got out of bed and hobbled over to take my medicine. Usually within a half hour all of the burning in my legs has subsided, but this morning it was a no go. I realized when I was pulling multiple bottles of pills out of my strongbox, that I couldn’t see the labels very well, and my head felt funny. It feels like my brain is swelling up and I have a new itchy rash all over my body. Chuck called my rheumy who said it didn’t sound connected to what he was treating me for, so I should call my PCP. How can swelling in your head and a rash not go hand in hand with autoimmunity? It could be CNS involvement. So I did what any sane woman would do, I cried. I am in between PCP’s and will be seeing a new one tomorrow for a physical. I decided that I wasn’t going to die and we’ll see what she says tomorrow. Have you ever felt completely abandoned by your medical professionals in times of crisis?