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Frustrated with docs and filing for Social Security and maybe a little venting too.
rikilynn1982 posted:
I haven't worked a full time job since I was in high school. While in college I lived off scholarship money and my parents provided a bit of extra cash here and there. (yes, I'm the baby of the family and I'm pretty spoiled. Not a spoiled brat, just spoiled) I understand the value of working hard, but honestly, I'm one of those people that never had to work hard for anything.

Little did I know that during what should have been my final year of college, MS would become part of my life. It took me two and a half more years to finish school after transferring to be closer to home. Since being diagnosed six years ago, I have not been able to work full-time and hardly work part-time. I've been working as a substitute teacher for the last four years, but that doesn't really pay the bills.

My problem is fatigue and pain. I have no "visible" symptoms, but if I sub three days in a row(that's only 4-5 hours a day) then I'm completely exhausted and it takes 2 days to recover. I cannot stand for more than 10 minutes before pain starts to set in and if I sit for long periods of time my back stiffens up and I can't hardly move.

It seems that whenever I go see the dr. my symptoms are mellowed and they just don't seem to get how bad it affects my life. I'm a former athlete and was very active before MS and I just don't know how to do this sedentary life style, but my body won't let me remain active. I'm filing for supplemental security income just to give me a little extra cushion and be able to pay a few bills. I go before the judge in November and I'm afraid my case isn't very strong because my doctors don't seem to understand where I'm at.

I know part of my worry is based on guilt. I know that there are many people out there in worse shape than I am that continue to work and take care of their families with so much class and dignity. I think that's just something I never really learned how to do since I easily succeeded at everything I did growing up. I never had any real challenges until MS. I'm nearly 29 and single with virtually no work history. I live at home dependent on my aging parents and older sister for support. I do what I can when I can, but I don't have a husband or kids or job that depend on me to keep me going. I didn't have a job before MS and now I have MS with a college degree that makes me "over-qualified" for most part-time jobs.

Feeling stuck.
hackwriter responded:

I hear a whopping fat guilt trip going on with you, for sure, LOL. We women just can't seem to shake the "superwoman" expectations (and the self-judgment of unworthiness), and can't help but feel we are not real grown-ups unless we join the Women's Olympics Full-time job/wife/mother decathlon event and win the gold.

Not only is that distinction NOT every woman's talent or desire, it's hard to do well even WITHOUT a debilitating disease. And we aren't all cut out for it.

On the SSI: Your doctors ought to know that MS fatigue worsens with activity. It isn't clear from your writing whether they have actually expressed a lack of understanding and sympathy. If they aren't treating your fatigue and really don't get it, it might be time to get new doctors.

There is a radio show at which is hosted by an MS colleague of mine every first Wednesday of the month. Tomorrow evening the topics are Social Security and Insurance discussed with a rep from the National MS Society. She has asked me to send her some questions folks ask about. I'd like to send your story to her, she might address your issues very directly on the show, would you mind if I did that? The pre-recorded show starts at 8 p.m. Eastern Time.

At any rate, I hope you'll visit the website and then take a listen tomorrow--and stop being so hard on yourself. Those are big hopes, I know, but darn it, you deserve that supplemental income. It's not your fault you have MS.

rikilynn1982 replied to hackwriter's response:

Thanks for the support, your words really helped since I've been a little down lately. Your words and the room full of H.S. freshmen that thought I wasn't even old enough to be out of high school made me feel so much better today. I may have MS, but at least I'm not looking old yet!

You are more than welcome to send her my story. Do they keep the show posted for a few hours though? Wednesday nights I volunteer with the teenagers at my church and won't be home to listen at the regular time.

As for my doctors, it's not that they don't understand MS. My neurologist is actually an MS specialist, as is everyone on his staff. It's more that they've not seen me when my symptoms are at their worst. It seems every time I go to the office I'm having a pretty good day, which makes it a little more difficult to express the daily struggles.

I haven't had a relapse or real flare up in six years so they labeled my disease inactive about a year ago. But I still have lingering symptoms that cause me trouble.

Because of my lack of insurance I had to stop seeing my PCP and start going to a doctor at the indian clinic. I'm grateful for the available care, but it's not the best. Their resources are limited and the staff there does not know much about MS because they don't see it too often. In fact, I may be the only MS patient at our local clinic. I certainly can't get any disease modifying drugs through them.

Since I can't get rid of the MS, then my greatest desire would be to have affordable health insurance so I can go back to my old PCP.

hackwriter replied to rikilynn1982's response:
Hi, Riki,

The radio show about Social Security is Sep. 7 at 8 p.m. on MSLOLradio, sorry about the mix-up. The shows are archived, so if that's a bad time you can pull it up at an hour that is more convenient.

A topic that one of my colleagues mentioned about what young women do about SSDI eligibility when they are diagnosed young and have little or no work history is going to be discussed. I thought this might be of particular interest to you.

LilDynamite72 replied to rikilynn1982's response:
Hi Riki,
I just now read your post on applying for SSDI and wanted to share with you that I have tried applying once on my own and then again with a company called Allsup. They are fantastic and I didn't have to do anything but go to dr appts then call them to update my file. It only took them 7 months to get me approved. I was shocked to say the least. If you don't get anywhere with seeing the judge you are going to see, I highly recommend you try Allsup. Also I hadn't worked in a good few years and thought that was going to hurt me but it didn't. Just tell them Jami Taylor recommended them to you if you ever choose to try. Good Luck to you and keep me posted on what happens.
Muzzkat responded:
onight hackwriter posted: MSLOLRADIO will air a live broadcast discussion about MS and SSDI tonight from 8p.m.-10 p.m. EST. I will be one of the guest panelists, and you will have an opportunity to call in with questions. You can listen online at: Also visit the website to listen to podcasts of earlier shows. If you miss the live show, it will also be available on the site via podcast. Kim
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)
MrsCRG responded:
OMG!!!!! We have the same background, we are the same age, DX around the same time, and similar syptoms. I have been looking for Where do you live? We should share email address.
rikilynn1982 replied to MrsCRG's response:
I know! It's like you're my other! I'm in Oklahoma and you can email me at Where are you?
MrsCRG replied to rikilynn1982's response:
Lol..Ikr I'm in Illinois. My email address is You can email me anytime.
thefurryfour responded:
There is a formula that SS uses to figure out your eligilbility. I would check it out. I know you have to have been employed. Go to the office and find out.

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