MS Strength

I’m writing about this topic because I am once again exasperated by another person’s battle with the Social Security Administration. I recently read a post by Blindbeard (a fellow MS blogger) about her third social security disability insurance rejection. Reminds me of my own battle, which after 2 1/2 years, has finally been won.

I first filed for disability in February of 2006. I had just been layed off from my part-time job with a local library, after various attempts at modifying my hourly schedule, taking unpaid time off, and modifying my amount of bending, reaching, walking, and so on. I was there (both as an employee and a volunteer) for almost 2 years. The reason for my termination was clear: the inability to keep a regular work schedule. At the time of dismissal, I was down to about 15 hours a week. My employer (bless her) gave me a written and signed letter about the reason for termination, which I sent in with my disability application.

I was rejected the first time in July of that year. I heard this was standard, unless the claimant was completely incapacitated or had additional complicating medical conditions. So I contacted my local MS Society chapter and asked them if they knew of any reputable disability lawyers. I called the first one on the list.

My lawyer had us send out the first appeal and new supporting medical information. He told me this process was usually pretty quick, because the appeal would most likely be rejected and we’d have to make a second appeal to go to court. Still, I did not receive the second rejection letter until early 2007. The next step was to file another appeal, which would get us a hearing with a judge. That was filed in March of 2007 and in April I received my letter saying to gather as much medical evidence as possible and wait for the court date. My lawyer contacted any relevant doctors I had seen in the past 3 years (neurologists, primaries, and neuro-opthamologists.) I waited for my letter telling us to appear in court.

Finally, a year later— March of 2008—- I received my letter about appearing before a judge. My lawyer had me get a medical questionnaire filled out and signed by my neurologist. Apparently judges respect signed questionnaires, but not medical records. I did just that, and pestered my neurologist, who is very accommodating, until the questionnaire was in my hands. Basically it indicated that I cannot work a regular (even part-time) schedule outside of the home. Dah.

I’m happy to say that we had our day in court this June. 10 minutes of the judge verifying that I have not had gainful, full-time employment in about 5 years, and have ceased to be able to even work part-time regularly since 2006. He loved that stupid questionnaire! That was all it took, after more than 2 years of struggling.

I have to say that I am still waiting for the benefits to start coming. The judge said it could take 60-90 days. My husband and I are hoping for something in early August. I have had sporadic, at-home work and a little outside work in the past 2 years, and we are completely broke. Our out-of-pocket premiums for our health insurance are now $775/month, and we are in a little bit of debt (again, it could be a lot worse.) My husband doesn’t make a ton at his small company, which he has been at for 2 years. It’s awfully hard to live on one income these days, with staggering gas prices, outrageous mortgage payments, and other basic costs of living. Thankfully, our parents have helped us keep our debt from spiraling out of control.

This is the kicker: a person on social security disability insurance (SSDI) can still make some money on top of their payments with part-time employment. So as a person is going through the whole rejection process and feeling guilt and uncertainty because he or she wants to work, doesn’t want to milk the system, or maybe is able to work a little, after winning and receiving benefits, it turns out it’s still okay to do a little work. Weren’t they just telling us we’re capable of work so we don’t qualify for disability?…….

As if life couldn’t get any sillier at our house (general financial strain, a recent increase in our health insurance premiums, Bill’s stressful financial job, my lead limbs), we woke two nights ago to the sound of one of our air conditioning units completely fizzling out. And of course, this was the newer of the two. The rest of the night the older, on-its-last-legs unit sputtered out cool air as we hoped it, too, wouldn’t croak.

Last night we trekked to Walmart and got a new unit. Doesn’t it always seem like these kinds of annoying jobs need to be done when it’s 95 degrees and 95% humidity? Never in the spring or fall, when it would be easier. I think back to before we were married and how we did the same thing out of necessity at my old apartment. Guess necessity is what gets our butts moving!

I’m happy to say that we now have a new, functioning air conditioner, and I’m thankful that in New Jersey, the heat wave is usually just a summer experience. Just like in other aspects of life, it could always be better, but it could also be much worse.

I’m trying to keep a sense of humor about it, but yesterday I was in tears because I could not get to the library to volunteer. Only my second scheduled time there. I emailed the volunteer coordinator at the last minute— who was very understanding— after fruitlessly trying to get myself ready and into the car in 95 degree weather (full humidity.)

Since my latest relapse, I have been having intermittent symptoms. I was doing pretty well for a couple of years, with very few symptoms each day (except the annoying bladder/bowel issues.) I have developed more fatigue, or maybe I should say “lead limbs.” My mind usually feels awake, depending on if I get enough sleep. It’s my limbs that have been troubling me. They feel like cement sometimes, and my bad left leg and right hand trouble me the most. Not sure if it’s the hot weather, or the symptoms have decided to return and stay.

These unpredictable bouts have made it very hard for me to keep a regular schedule. Add the flu-like side effects of the Betaseron (still happening after 3 years of use), and each morning has become a crap shoot. When I recently worked at the library, I was so glad they gave me afternoon hours (1 – 5 pm.) Now, the 1pm hour of arrival is iffy.

I know volunteering is just that: voluntary. But being a former, conscientious worker makes it hard to become a “hopefully-I’ll-make-it-there-sometime-this-afternoon” volunteer. Just because we have MS does not make us feel any less responsible to commitments.

An issue I have to stop beating myself up about. Working on it.