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.





Thursday, February 23, 2017

Acupuncture saved my life


In the last half of 2016, I began seeing a pain rehabilitation doctor I was referred to by my rheumatologist. My neck has been just god awful for me lately. 

For a long time, I hadn't been sleeping in my bed but on the couch. Even then, I was barely sleeping.

We started with trigger point injections. This is where lidocaine (a numbing agent) is injected directly into very tight muscular points. It relieves the tightness and allows you to move in ways that will help work that knot out. These were really effective at the start, but began to very quickly lose effectiveness past the first few days.

Our plan b was to start acupuncture and see how that went. It isn't covered by our insurance and y'all know how I feel about 'alternative' medicine things, but I was willing to give it a try.

I can honestly say right now that I don't know if I would be alive without acupuncture.


People may think I'm being melodramatic in saying this but, for me, it's a reality. I can deal with pain in a joint on a normal basis - heck, I lived and worked with bursitis for several months. This neck pain is something that is just demoralizing and awful in the worst way.

I can avoid using a joint like my knee but not my neck! 

We've only done the acupuncture a few times, but this last time I went for three weeks until having real neck pain again this past Wednesday. And, when I say this, I mean little-to-no breakthrough pain to manage as well - no TENS unit, hot packs, ice, ointments (aside from those to ease my sunburn), etc.

This is practically a miracle for me.

I've been able to sleep! And in my bed next to my husband at that! Tuesday night was the first night since I got back from Mexico that I didn't sleep in my bed once my sunburn cleared up enough.


All that said, this has been also a practice in self-care. For example, I can't be upright all day. It's just not something I can do and survive. That's actually been part of what's wound up causing me more pain this week.

The amount of time I've spent upright the last two days, though, has been productive and amazing. In addition to publicly speaking out again sexism and sexual harassment that pervades our patient communities, I've also been working on some great things for Chronic Sex and related projects. I won't talk too much about it here, but it'll advance a lot of research and information on sex/intimacy and illness/pain/disability.

I get acupuncture next week Thursday and I couldn't be more excited.





Monday, February 20, 2017

Sometimes you just need a reset


The last few weeks have seen me having a lot of good days which I desperately needed.

It all started with a trip to Cancun, Mexico with my college roommate. It was a great way to take a break from social media and work. I mean, I did manage to get a horrible sunburn because we were drinking margaritas in the ocean, but that's beside the point.

It's hard to not rest and want to soak up as much sun as possible when you're around this instead of frozen tundra Wisconsin life.


It was nice to get a sunburn honestly. It was a good reminder that pain usually comes to people after they do something. 

Katy and I also just really needed to spend time together in the wake of all the political ick going on.

Despite having a sunburn when I got back, I really felt like I had a fire lit under my ass. For the first time in a while, I had really just taken a legit break and felt ready to attack things.


A week later, T and I got to go see one of my favorite bands - Boyz II Men!


I've been listening to them ever since I was little and I have always enjoyed their music. Seeing them in person was amazing.


It also got me thinking about other things from my youth that I really enjoyed... like albondigas soup... which all connects back to Mexico, funny enough. I talk about it in my latest piece over on Medium.

Hey, and I lost like five pounds within a month!

It's not that things are all going right. My inflammation levels are high. My fatigue is being a butt. I have a million things I want to do and not always enough energy to do them.

Still, things feel better. Rest is incredibly important, especially in times of resistance. Make sure you're taking care of you.