Some reassurance.

Sean and I met with a lawyer today. She's going to represent me for my hearing before a judge for SSI. But it could end up taking ten to twelve months to get my hearing date. My medical records will be retrieved and paid for by my lawyer, and she'll charge me later. It was a pretty brutal day to eb relying on the bus system, but Sean was there to help!

The Hunt for SSI + Other Things

Every year, the week before Christmas, I get a terrible chest cold / sinus infection that lasts forever. This year was no different than the previous two. I'm sitting here sick, nursing a partial root canal that was done yesterday, and trying to get some jewelry orders filled before Christmas and send off last minute gifts.

After my last denial about a month ago, I contacted some lawyers. They were extremely rude, short fused and irate with me. Besides that, they had the same old doubtful attitude about Fibromyalgia & it's existence in me. He even said, "Lupus is one of those things you can't definitely diagnose." I was just shocked that someone who is supposed to be wanting my business, someone I'm supposed to be giving money to, was treating me like this. We scheduled an appointment to meet, but I canceled. When asked by his secretary if I wanted to reschedule I said, "Uh, definitely not."

I contacted another lawyer whose legal assistant told me to acquire my medical records from DSHS and all of my other and previous doctors. Unfortunately I don't have $50 to drop on each doctor whose records I need (would amount to at least $100 to get all my records immediately - I just CAN'T afford that. there's no way.) BUT - I did get my records that DSHS had on file.

On top? A letter from my current specialist doctor in September stating very clearly "SHE WILL NEVER BE ABLE TO RETURN TO WORK."

So much validation just in one photocopy.

After all the bullshit I've been through with doctors and government agencies and lawyers.

I can't even express how much relief just that paper gave me. Just that sentence. I'm not crazy, I'm not lazy, I'm not anything that uneducated, self-absorbed people want to believe I am.

Happy Holidays everybody.

xo swiss

It's Another One of Those Angry Times

Where so much stupid bullshit has built up into this massive pile of anger, frustration, stress and depression inside of me.

I got my denial from SSI again. I now have to appeal before a trial judge. I have to somehow find a lawyer, after all the ones I've already talked to have basically told me it's going to be impossible.

SSI Letter from Me.

Hey guys. Sorry I didn't get back to all your comments yet, but I got them and I sincerely appreciated everything you guys suggested and said. Thanks so much for being so supportive, and I'm always thinking of you guys and hoping your bodies are doing better than mine. ;)

So, this is the farthest I've gotten with disability. Someone finally called me and said he was sending me an activity form and also one to my mom and to my boyfriend. He said I could type a paper of my view of my condition, as many pages as I want.

I decided to really get on it today, and this is what came out - sort of stream of consciousness.

+++
In 2002 I was diagnosed with Evan Syndrome. That summer, I went through Methotrexate and Rituxan chemotherapies. The Rituxan put me into remission. By late 2002 I had already gotten myself a job as a customer service representative at the mall information booth. I loved my job, and was feeling good again. I decided to enroll in community college for the 2003 school year.

In December of 2003, I became sick with the flu. I took a few days off, went back to work, and it just steadily got worse. From December 03 to February 04, I missed several days of work, was hospitalized twice, and I just couldn't seem to get better. I was doing school and work, and I had to make a choice. I decided to quit my job. I soon had to quit school too.

I relapsed remission in Summer 2004, and was treated with more Rituxan. After another successful Rituxan treatment which put me into remission again, I still didn't feel the same. Since then, I haven't been able to work, because of my exhaustion, weakness, pain and extreme sensitivity.

By 2005 I had been diagnosed with Lupus and Fibromyalgia. My doctor didn't inform me much about my illness, and I didn't learn until recently that not only do I have a bad reaction to sunlight, but a worse reaction to any fluorescent lighting, as do a lot of Lupus patients. I've been taking steps to avoid sunlight and UV rays at any cost. I use SPF 15 moisturizer on my face, then I apply another layer on my face and head to tow with SPF 55. I also wear a hat and long sleeves, but they don't shield very well. It only takes about 20 minutes for me to have a reaction to fluorescent lights (sweating, tiredness, shaking, weakness, and nausea.) and you can't go anywhere without fluorescent lights nowadays. It's even to the point that regular incandescent bulbs could be banned altogether. After being exposed to fluorescent lights and sunlight, I am also more susceptible to getting sick or having a Lupus flare, which makes every part of my body a lot worse.

My daily routine isn't very fun. It's incredibly frustrating for my body to be so physically exhausted, while I want to be doing something productive. If I push myself too hard, it makes everything worse, and I've learned that by now. I have a lot of allover aches as well as a very low pain threshold. I have Fibromyalgia tender points which I'm always bumping into, which is excruciating. I can't sleep at night because it hurts to lay on my body: I can never find a comfortable position that doesn't feel like I'm putting pressure on a bruise somewhere on my body. There is always an area of my body that is in pain. It just never ends.

It's like the Lupus and Fibromyalgia treatments cancel each other out. I want to get more exercise and work my weak muscles, but I can't be out in the sun, I can't be under UV rays, it hurts to move, it hurts to lay. I get lightheaded, weak and nauseas when I do any kind of physical activity.

My stress levels are still through the roof, which isn't helpful at all to the illnesses I have. When I have a panic attack, I get sick. I have panic attacks, when I just can't find any help. My doctor from 2002 - 2006 was abusive and cruel, causing me to have a bad nervous reaction when at an appointment or calling my doctor. I feel like I've tried every possibility to get someone to notice that I need medical attention that is impossible for me to supply to myself, and either nobody can or nobody wants to hear me.

+++

Suggestions? Help? PLEASE.

More Doctor Babble that is probably Repeats of Information.

You guys know how it is though, not feeling good = no motivation.

I'm going to try to make this post as summarized as possible, and if you have any questions or want me to clear anything up for you, just comment. :)

When I was 17 I was diagnosed with Evans Syndrome and started seeing a pediatric oncologist. It took three biopsies to figure out what I had, because it was that whole process of elimination thing. I saw him from 2002 until 2006, even though I was way past pediatrics. The reason I kept seeing him was because I was on horrible state medical and no rheumatologist on the planet would accept it. I had no choice. He insisted I call him when I was sick or had any problems, rather than going to a general practicioner, which you're apparently supposed to do.

Through those years that I saw the ped. onc. he was a really strange guy. My mom and I didn't like him. He made us wait in the waiting room for literally four or five hours every appointment, and for a long time we were going to appointments every week. When we did get to see him he would babble on endlessly about horses. His responses to things like yeast infections were, "That's a hygiene problem." Everybody knows yeast infections are common in people with low immune systems. He made masked sexual remarks re: my boyfriend and I, he would prescribe me 20 pain pills at a time, saying I could take one every four hours. When I called back for a refill, he would yell at me, even though I took them as prescribed and as needed. We finally had to stop seeing him when he told me one day that I was going to need Cytoxan. I came back on the day of the appointment, and nobody had even set the appointment. Apparently now the doctor wasn't sure he wanted to do Cytoxan. So I spent upwards of a month preparing myself mentally for this challenge. I was absolutely terrified. His response by my angry reaction? To act like it was my fault. Not only that, but while I'm sitting there crying my eyes out, he says to my boyfriend and mom, "She must be really difficult to deal with when she's like this." They were shocked and I stormed off.

At the next appointment, I had figured out another doctor. My grandma convinced her rheumatologist to accept my insurance. Dr. 1 said he would send Dr. 2 my entire chart, meet with him, talk with him regarding my case. Three months later when I arrived for my appointment with Dr. 2, Dr. 1 still hadn't sent the chart. The faxed half of it and gave up. It's the most pathetic excuse for a clinic on the planet. He mentally abused me for years and I allowed it because I didn't know any better, and now there isn't anything I can do about it. Don't let yourself get treated like this by a doctor, because now I have a doctor who cares and I know I didn't need to be treated like that.

Anyway, now I'm re-applying for disability and Dr. 2 can only describe my state for the last year, not for the last 6, and Dr. 1 is a jerk who won't respond to our calls. Is that even legal?

Disability Redetermination called me today and are sending me another form to fill out. The guy I talked to was very nice, and said I could attach as many pages as I needed describing the state of my condition, in my eyes. He is also sending forms to my mom and Sean.

I may have a chance, then again I say that each time around.

Denied!

50 Ways to Encourage a Chronically Ill Friend

Somebody just posted a bulletin containing this link on myspace. This is so awesome - please please please check it out. http://www.everydaygivingblog.com/2007/07/50-ways-to-enco.html

DENIED!

So I received a denial letter from SSI Disability. Except this time, I didn't flip out. For the first time since I've been applying, I haven't completely collapsed into an anxiety attack. I think it's partially because I slept most of the day and feel like I'm getting sick, but also because this time the letter actually made me feel like they took out a little bit of time to look at what was going on with me. (I've made my responses to parts of the letter ::red::.)

July 23, 2007

We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training and work experience in determining how your condition affects your ability to work.

You said you are disabled due to Evans Syndrome, fibromyalgia, Lupus and RA. The records support these conditions and limitations, however, they do not preclude all work activity.

[ The problem with their decision is that it is based on a questionnaire which, while being something like 15 pages long of repeat questions over and over, isn't that in depth. I have four conditions that all result in different and opposite results, making my health extremely unpredictable. I feel good one day and absolutely miserable the next. This makes it impossible to hold any job. Also, my environment directly contributes to the way I am feeling. Meaning any type of stress, loud noises, etc, but also things like fluorescent lights which I'm extremely sensitive to. ]

In addition, your anxiety is currently under control. Based on your description, we have determined that you can perform the type of work you have done in the past as a cashier. Because you can still perform some type of work, you are not considered disabled and your claim is denied.

[ Funny, I didn't realize I had been treated for anxiety by anyone. Other than being on Cymbalta by my rheumatologist (which while it is an anti-anxiety med, it is also a time released anti-depressant and pain reliever as well.). By the way - Cymbalta is something commonly prescribed to people with Fibromyalgia, so it's not directly related to anxiety. While my rheumie knows I am constantly anxious, they haven't done anything to treat me for it. I have been unable to find any kind of mental health, which means I'm in a constant state of worry and have two or three panic attacks a week. Nobody has even asked me about this, and if they had - I would've told them exactly that. But somehow they have determined that my anxiety is under control. Weird. About me being a cashier - I was a cashier under fluorescent lights which made me physically sick every single time I worked. I didn't know this was what was making me ill until this year, because my doctor never informed me that Lupus caused me to be sensitive to fluorescent lights. ]

Needless to say - I'm appealing. I've already called and requested the forms.