A couple of weeks ago, I received a letter from Social Security. It’s time for them to check up on me and make sure my disabilities haven’t magically disappeared in the two years since my last review. It doesn’t matter that they’ve been told repeatedly that my rare kidney disease, MSK, is congenital and progressive and I’ll never get better. It doesn’t matter that like most chronically ill patients, I don’t just have one condition, but several that cause issues every single day. It doesn’t matter that I had to fight to get disability in the first place because I’m no longer able to hold a full-time job due to my symptoms. It doesn’t matter that they have stacks of my medical records, years of proof that I have this disease. It doesn’t matter that I had to go before a judge with an attorney and defend myself, and that judge decided I am permanently disabled due to my conditions. Permanent means permanent, right? Apparently, none of that matters.

Last year, I decided to do something I’ve always wanted to do and go back to school to get a degree. Although I’ve been struggling with symptoms since before I won my disability case, I felt like I needed something to help occupy my time. I can’t physically work, but don’t like just wasting the days away either, so I decided to try to do something for myself. I’m unable to walk around a big campus and sit in a class for an extended amount of time, so I decided to do it all online. That way, I can work from bed and my recliner, and I’m not disrupting an entire class when I need to go to the bathroom five times an hour or more.

My first semester started off OK. I started in May 2018, and since it was the summer, the courses were shorter and condensed. I only took two classes. I was dealing with some significant symptoms, but luckily, I was able to pull that semester off. That fall, however, I couldn’t put it off anymore. I found out I had ovarian cysts in September. They were a significant source of pain. On top of that, I also had a 1 cm kidney stone that was causing pain and I had to have surgery for that in October. That was my 17th surgery for kidney stones. I was having other issues at the time as well, including horrible headaches that refused to go away. Where I’d never had problems with my blood pressure before, now I had high blood pressure and had to try several medications before we found a combo that worked.

By the end of January 2019, in the spring semester, I got the news that the cyst on the right ovary had changed considerably, and now the ovary and fallopian tube had to come out. My doctor also diagnosed me with adhesion disease when she went in to remove it. That surgery was done on February 4, 2019. A little over three weeks later, I had to go to the ER and ended up being admitted. I needed emergency surgery for an ovarian torsion of my left ovary. It twisted three times, which apparently is highly unusual according to my doctor. I’m still not well and I’m still dealing with pain. My doctor says on top of the adhesion disease, I most likely have phantom organ pain from having my right ovary removed, which is also very rare according to what research I’ve been able to find. She’s said to me, several times in fact, that I have some of the worst luck of anyone she’s ever seen. Thanks, doc!

Ironically, I hadn’t needed a surgery since 2015 until I decided to go back to school. Now I’ve had three in a very short amount of time. My body definitely isn’t agreeing with my decision, but I’m trying to fight it out. Social Security wanted an account of how many doctor appointments I’ve had and how many prescriptions I’ve had filled since June 2017. On their form, they give you space for three appointments. I literally laughed out loud.

In going through all the patient portals and making calls to my doctor’s offices to make sure I got the correct information, this is what my experience with chronic illness totals up to in the last two years. I’m not a hypochondriac, in case you were wondering. All of this comes from me making an initial appointment, like for my headaches that wouldn’t go away, and the rest are all from my doctors as follow ups for legitimate issues and what they found. Just the appointments, tests and procedures added up to five neatly typed pages. The prescriptions were another five to six pages. I also made sure to include the future appointments that are scheduled so far, just for good measure.

  • There’s a total of 14 providers I’ve seen in the last two years – this includes doctors and nurse practitioners.
  • Between all of those, I’ve had 60 office visits.
  • I’ve had some sort of radiology tests done 12 times – MRI, CT, ultrasound, X-ray.
  • I’ve had labs done 14 times.
  • I’ve had 2 outpatient procedures and 3 surgeries.
  • I’ve had 31 prescriptions filled in that time, and I only get pain medication when I have surgery; so I got three prescriptions for those. The rest are all for maintenance of my condition(s).

This is why I can’t work full time even though I’d love to be able to. This is why even though I may not look like I’m sick on the outside, I really am. This is why I’m hoping that once I graduate, if I can make it all the way through, I can get a job working from home part time to help supplement my income because no employer is going to hire me with the shape I’m in. My symptoms dominate my life, and there is no fixing that. They aren’t just going to magically go away. Believe me, nobody wishes they would more than I do. Not even Social Security.

Why does Social Security send a review every two years when they already have many years’ worth of documentation and proof that my situation is as bad as I, my doctors, their doctor, a vocational expert from my previous field of work, an attorney and a judge all said it is? Under any other circumstances, permanent means permanent. Why is this somehow different?

I’m praying that since I’ve sent them all of this, they won’t hold the fact that I’m taking online classes against me. The last two semesters have really been difficult, and although I’m determined to finish, it’s been taking its toll. So now that I’ve turned the paperwork in, it’s a waiting game.

I wonder if they’re aware of just how much stress it causes to have to wait on strangers to decide if you’re sick enough to continue getting your only source of income? I wonder if they know it’s well-documented that stress makes people sicker? I wonder just how much more I’m going to have to go through medically in the next two years to be able to prove I’m still sick when they decide to review again.

Like many, I am the very definition of invisible illness. Good luck to all of you who are in the same position I am right now, holding your breath and waiting to see what happens. I know just how stressful it is, and my heart goes out to you all.

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Author: Mary Maston