Disability survey/question

[ppearl214]

thanks all for your very valuable inputs/suggestions. Provided many of the suggestions/inputs to the commission last night at our meeting..... and will be doing a press release as well.  Will also be speaking to the powers that be around here and gaining their further inputs.

You all rawk! will provide further updates later when I have more time.

Phyl

[lacey7]

Hi there,
I have fibromyalgia, and had to quit work after 13 years.  Just couldn't sit at the computer for 8 hours a day.  Fibro is a disease, and really cannot be seen.  It's mostly on the inside, too.
I applied and got it on the first try!!!!!  Could not believe it.  To me, it seems like it would be kinda the same thing.  On the application form, I filled out how it affected my life.  AN affects our lives just like that.  I have a hard time sitting for more than 30 minutes, so going to church is almost out.
Same as going to movies.  Can't really stand for longer than 30 minutes.  You get the idea.
Hope this helps you.  I might be able to help you as to what's on the real SSD form.
I also had a lawyer standing by, incase I didn't get it.  He was ready to take over.  Since I got it right away, I didn't need him, and he didn't charge me a penny.  WOO HOO!!!
Thanks for taking on this committee.
Lacey

[ppearl214]

Hey Lacey,

thanks for sharing this with us. Like you (and many here), I also have FMS... my first diagnosis 7 yrs ago. Found it to be a "secondary" to all my other ails.  There is a great book called "Living Well with a Hidden Disability:  Transcending Doubt and Shame and Reclaiming your Life" by Stacy Taylor, M.S.W., L.C.S.W with Robert Epstein, PhD.  My sister gave me the book when I was first diagnosed with FMS (she has "hidden" situations as well and advised this read).  May be worth a peek to any and all of us that deal with our AN's, FMS, etc that show nothing outward, but we sure feel in inward.

As I noted, many of us do live with this "hidden" aspects of our AN journeys (not all, as some as facial, etc issues) and I brought this up during the meeting.  I guess, for me, its me trying to help bring to the forefront that living with "hidden" aspects of illness (regardless of any disability) and hoping something good can come from it.

I thank you all for terrific inputs.... in light of recent press (ie: Sen Ted Kennedy, the great debate of brain tumors and cell phones, etc).... at least this AN situation many of us come to know is being brought to the forefront. In reading my National Brain Tumor newsletter yesterday, I'm thrilled the U.S. Gov't (in light of Sen Kennedy) proclaimed May 2008 National Brain Tumor Month...... it is far time that this situation that we endure is recognized and addressed. I never thought I'd get involved with local politics, but if my participation on the commission can help at least one person, then wonderful!

Thanks all! Great job, inputs, thoughts, suggestions... and heart!
Phyl

[leapyrtwins]

In reading my National Brain Tumor newsletter yesterday, I'm thrilled the U.S. Gov't (in light of Sen Kennedy) proclaimed May 2008 National Brain Tumor Month...... it is far time that this situation that we endure is recognized and addressed.

Phyl -

I had no idea there was a National Brain Tumor newsletter.  Where can we subscribe?

Thanks,

Jan

[Kaybo]

Lacey~
If you don't mind me asking, how come you can't sit for more than 30 minutes?  I have not experienced this problem...do others have this??   

K

[Jim Scott]

K;

My wife has suffered with fibromyalgia for many years.  She cannot sit for very long periods without pain.  I assume that, being a condition that can affect many parts of the body, fibromyalgia sufferers can experience pain at varying levels and in different areas of the body, under various conditions.   

Jim

[lacey7]

Dear K,
It's b/c we hurt all over.  You can't do too much of the same thing, or your body will rebel.  Mostly, our bodies hurt all over, from head to toe.  Honestly.  And, we look sooooo normal.  That's the hard part.  My feet have been hurting alot from taking 30 minute walks (to try to lose weight), but I had to cut back to 20 minutes.  One day, our shoulders hurt, the next, the back hurts.
Thanks Jim, for answering K about your wife.  You were right.
It's a horrible disease, and there is no cure.  Sometimes when we go to the movies (not Jim and me.........my hubby and me), I stand at the back of the theatre after hurting from sitting.
I've had it 19 years. 
How many on this site have fibromyalgia???  I've always wondered this.  Can we take a quick survey???
I hope I helped answered your question, K.
As far as getting SSD, like someone said, go to your local social security office, and they will give you the paperwork to fill out.
It NEVER hurts to try!! 
Blessings,
Lacey

[Kaybo]

Lacey~
Thank you so much for your reply (& Jim's).  I got confused b/c you said, "AN affects our lives just like that. I have a hard  time..."  I was probably just reading too fast and trying to deal with 3 girlies at the same time!!  I understand now.  I had an aunt w/fibromyalgia.  I thought that it was b/c of the AN that you couldn't sit and I was going to count my blessings for yet another "side effect" that I don't have to endure!

K

[lacey7]

You are welcome, K.
I saw a pic of your 3 girls.  They are very cute, and I'm sure you are very proud of them.
I raised 3 kids, and I know what it's like.
I'm glad you understood what I meant.
I pray you have tons of side effects that you NEVER have to endure.
You are an amazing survivor of everything that you have gone thru.
Please feel free to ask me anything anytime.  Well..........not too personal!!   (kidding).
Lacey