Walking on Sunshine

The change in my mood has been remarkable since I found out that I would be moving forward with the hysterectomy. For people who are chronically ill, the difference between getting good treatment and not is HUGE.

Being chronically in pain or ill is depressing enough. When you compound it with feeling frustrated that your medical providers aren’t listening or don’t seem to be working toward a solution to the problem it becomes almost unbearable. At that point it’s like there’s no end in sight. The thought of living that way FOREVER is pretty heartbreaking.

I saw the ENT this week as well. He reviewed my CT scan with me and sure enough, my septum is deviated. He said that with surgery I will be able to breath better and suffer fewer sinus infections. Since I’m trying to do a half-marathon (that idea seems crazier and crazier to me now as I cut into my training me), I need to be able to BREATHE while I walk quickly/jog. So, we’re moving forward. My tentative surgery date is November 5. That’s probably too close to the hysterectomy, so we’ll likely be pushing it out a week or so.

I am so thrilled to be moving forward on these two things. Finally not having to worry about endless bleeding and heavy bleeding is such a weight off my shoulders. It’s seriously felt like there was an elephant trying to balance on my head or shoulders. It’ll take a bit after the septoplasty, but to be able to breathe well at night¬†should reduce some of my fatigue during the day and give me the energy I’ll need to train and finish the half.

The other thing I’m excited about is that my shrink gave me a prescription for ADHD medication. I tested “average” on the cognitive skills assessment, which would normally mean no drugs for me. However, given my symptoms she thought I could try it for a month and see if it helps. I won’t be starting until after the hysterectomy though. It’s probably a good time to start since I won’t be doing too too much physically and will have be largely focusing on mental tasks.

These last couple months have been great in terms of moving forward in my health. I hope this trend continues into the foreseeable future! I’m not sure what else I can control at this point, but who knows.

My fibro isn’t Lady Gaga’s fibro

Lady Gaga has fibromyalgia. I’m sorry for her. Having fibro sucks.

And apparently people are now talking about fibromyalgia. This is GREAT. A lot of people, doctors included, don’t think fibro is a real thing. They think it’s all in the mind or some bullshit like that. It’s not. Functional MRIs can now show us that fibromyalgia is a real thing. In case you don’t believe¬†Lady Gaga, here are 15 other celebrities who have it.

What concerns me about Lady Gaga sharing her experience is that people are going to hold her up as the model for fibromyalgia, and compare the rest of us to her.

It’s not fair to say, “Well, Lady Gaga swings from a trapeze while singing during her shows and she does shows all the time. Why can’t you come to a party?”

That’s not how chronic illness works.

First of all, fibromyalgia is characterized by three main things: widespread musculoskeletal pain, fatigue, and localized tenderness. How strong each of these is and how often they affect someone depends on the individual. There are an estimated 5 million people with fibromyalgia, so you’re basically looking at 5 million different cases with different symptoms.

Second, a lot of people with fibromyalgia have other chronic health issues. That’s right. As if having fibromyalgia wasn’t crappy enough, we get hit with more. Take me, for example. I have lupus, Hashimoto’s thyroiditis (which may be an expression of the lupus), anxiety, depression, Type 2 diabetes, IBS, and chronic back/leg pain (after a spinal fusion that went kind of wrong). All of these affect my “activities of daily living.” So even if fibro isn’t kicking my ass on a given day, something else probably is.

Third, medical things aside, we’re all VERY different people. We have different expectations for ourselves, different lifestyles, and different life situations. Lady Gaga and Morgan Freeman and whichever other celebrity has fibro are all in a completely different place financially than I am. They may have help to do things that I don’t have – someone to clean their house, someone to do their hair, someone to drive them places. Us normal fibro sufferers have to weigh the costs of our actions against our plans for the day and week. If I know that I have to do laundry, wash dishes, and vacuum, I know that I’m not doing much else that day. Those individually cause pain. Together they’re a nightmare.

So yay, fibromyalgia is getting some attention. I just hope that people do research on it and don’t just assume that it’s the same for all of us. Because it’s not.