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.


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.

Is it normal

for people with Fibromyalgia and chronic health conditions to be really anxious and stressed out by their families?

I don't see them very often. After I moved in with Sean, since I don't have transportation, the only times I see my mom are when I need a ride to the doctor. She does it on her day off, and claims to understand that I desperatley need help and says that it's not a big deal.. But then she acts agitated if I ask her to run me by one more place, or if the waiting room time is really long. She says things like 'It's okay, but my whole entire day off is gone.' And I feel saying that I'm really sorry I'm such an inconvenience. But when I -do- say that, she acts as if it's a completely absurd notion to even think of. Yet everything she does, tells me she is burdened and annoyed by me. Same with the rest of the family. They don't seem to realize how ill I truly am, seem to blow it off or downplay it. They don't consider how easily affected I am by stress. They don't realize that the things they say to me most of the time, really hurt my feelings. I cry almost every time I see any of them. Often times I have panic attacks after it.

It's immensely frustrating to be having anxiety attacks and worrying all the time, but where am I to go to get help for it? No counselor will accept me because of my lack of insurance and I have absolutely no way to pay for it. I'm at the end of my rope, I'm so anxious and I desperatley need some sort of help with it. If anybody has any suggestions as to what I can do to get me SOMETHING that will help with anxiety. Where do I go? (And please, don't say meditation. Because I try it, and this anxiety is on a completely different level. While focused breathing and meditation helps for small anxieties, it does no good when I'm having a panic attack.)

I'm so stuck.

I saw SICKO and it made me feel even more hopeless and stuck.

rituxan and prednisone

at my doctor's appointment on tuesday i was told that i should probably go back on Rituxan soon..

I was also told to withdraw from Prednisone one more mg, so I started that yesterday.. And at the moment I have severe menstrual related symptoms, in addition to it being hot. i haven't been able to mkae myself food for a couple of days. yesterday sean made me hashbrowns and i had a salad with meat and veggies last night.. today nothing... first time i've had a really bad hypoglycemia attack in awhile. i started shaking and sweating uncontrollably.. had to go lay down. i ate some chips and a glass of juice.. i just don't think i could eat anything else and i definitely can't make anything. no money to orderstuff, so im just going to wait until sean gets home.