Tuesday, February 28, 2017

I Spent Rare Disease Day on the Couch


I had to sleep on the couch last night. I’ve spent 99% of my day on the couch, too.

I hate doing that.

My pain the last few days has been higher than I’ve wanted to admit, even to myself. Today, this pain sits in my left knee and hip. I wanted to run errands and clean and do enough today that our apartment wouldn’t feel so cluttered.


On Sunday, some of my newer or more newly-worrying symptoms returned.

Since the summer of 2012, I’ve had a symptom off and on that I never was really concerned about until now. It’s what I describe as a whooshing of sleepiness down my arms from my neck. I say sleepiness as it’s not exactly numbness (though it’s similar) and I get very tired when this happens.

The first time I can remember this happening was at a museum. Hubs and I were walking around looking at collections and I got overheated, very lightheaded, and had this arm-whooshing.

I nearly passed out.

Understandably, I decided it was probably a fibromyalgia thing — something I would be diagnosed with a few months later after breaking down in front of a previous rheumatologist’s nurse practitioner. I knew I had either fibro or multiple sclerosis. The latter led to my great grandmother’s death and I just couldn’t handle the not-knowing.

Between the arm-whooshing recently growing in intensity and newer symptoms — intense leg twitching, slight slurring of speech, etc — I’m not sure that MS is off the table.

The allodynia and other symptoms I have of fibro are things I always believed to be fibro-specific… but I recently learned they overlap more with MS than I ever knew.

I’m honestly very scared and devastated — scared because I know that I might have MS and devastated that my great grandma lived with so much of what I’m dealing with on a day-to-day basis.


She was always so supportive of my and my health issues. When I first got sick at age five, she was the most supportive person in my life. She tried to make me less afraid of the possibilities that systemic juvenile arthritis can bring, like wheelchair and scooter use. She relied on her scooter and tried to make it fun, racing it around our backyard. That part didn’t exactly stick for me, because I knew she hated being confined to it, but that’s okay. I was always around to help get things out of cabinets so we could cook together (as long as she let me stand on the counter tops).

I take so much of my personality from her, the good and the not-so-good. She was blunt, even to us kiddos, but always made sure that we knew we were so very much loved by her.

It isn’t the end of the world if I wind up having the same thing as her. I’m just scared because I watched it take her body and then her voice and mind. That gradual wasting away is what scares me… even though I know that medications and other treatments have come a long, long way since she passed in 1999.

Hubs and I have discussed it and we would handle this like any other diagnosis: taking it one day at a time.

Still, I’m scared.


Thursday morning, bright and early, I see my pain rehab doc. I have to tell him about this and see what else we can do, see how he and the rheumy want to evaluate these symptoms.

I’ll do labs and see if my inflammation levels are down at all, since they were high in January.

And I’ll wake up on Friday ready to head to Minneapolis for the weekend, hug some of my favorite people, eat some amazingly delicious Parkway Pizza, and watch some collegiate women’s hockey.

This post originally appeared on Medium. You can read an update in the next post.





1 comment:

  1. Of course I hope you do not have MS. Still like everything, we keep going because after all what choice do we have? Not much really

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