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.

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

Is winter over yet?

The short answer: No.

I’ve been in hibernation virtually and in real life for a while now. Got off Facebook for the most part, stalking Instagram but not posting much, skipping out on local events. The thing is, I’m tired. #spoonielife is hard. A lot of my time recently has been taken up by doctor visits. Since early March, I’ve seen a rheumatologist, gastroenterologist, nephrologist, endocrinologist, psychiatrist, and orthopedic surgeon. I’ve had vials of blood drawn for 40 different labs, 2 24-hour urine collection samples, a regular urine sample, and a fucking stool sample. I am determined to figure out what the hell is wrong with me – my stomach, why I’m so fatigued, the pain in my back and foot.

There’s been some progress and some stagnation.

Progress
The rheumatologist diagnosed me with fibromyalgia. I’d suspected that for a while, but knowing that I’m not fucking crazy for thinking it is particularly delightful. Unfortunately, he wouldn’t give me any meds for it due to some kidney issues.

That turned out not to matter because I went to see a shrink to deal with the continued despairing thoughts I was happening. Those led to anxiety. I couldn’t deal with it anymore. I just wanted to cry all the time. I couldn’t deal with it anymore. The depression was killing me. The shrink is nice and is definitely invested in helping me feel better. She put me on Cymbalta, which will deal with the mood stuff, but is also used to help he chronic widespread body pain associated with fibromyalgia. There aren’t words that would accurately convey how happy I am that the fucking pain is mostly gone. It was making me insane. She also gave me something to help me sleep better.

I found a new endocrinologist because the last one was a raging fuckhead. The new one listens to me. He was willing to put me on thyroid medication to see if it would help with the fatigue (since I’m doing everything else I can to try to treat it). He didn’t think it would, but I feel differently. At least he was willing to try. He’s got me on a new diabetes medication which he said might help with weight loss. I’ve been doing some on my own anyway since my diet has changed, but I’ll take the help I can get.

My stomach issues have pretty much been resolved! I’m no longer running through stores and malls, praying I don’t shit my pants! The pain in my upper right quadrant is gone! The price I’m paying for it though is a restricted diet. I suppose I can start adding things back in to see what’s bothering me, but it’s almost not worth it. I don’t really miss the foods I’m no longer eating (apples, pears, soda, legumes, gluten). Sometimes I indulge, but it’s usually a pretty minimal indulgence. I bought a candy bar since I was feeling deprived, and I just didn’t enjoy it. I’ve definitely hit the point that if it’s going to make me feel like shit, I don’t bother. (Damn you, ice cream!)

Stagnation
My back still hurts. I had a spine doc look at my back MRI but he didn’t see anything in it that would be the reason for my pain. That frustrated the hell out of me, but he said that he thinks it could be the sacroiliac joint. Great. Something new. He referred me for physical therapy, but it takes a while to get in, so I’m going to wait until Mr. Lyndsy and I are back from our summer away. Hopefully that works. If it does, he said we could talk about steroid shots or a possible fusion. After my experience with the lumbar fusion, I’m not keen on fusing anything else, but we’ll see.

I have had continued foot pain as well. That’s frustration since I am traveling with my mother to London and Paris in June and I know we’ll be walking a lot. My foot despises walking, which blows since that’s pretty much its reason for existing in my life. I had an MRI done of my foot. It was ridiculous uncomfortable since I can’t really point my foot and my knee was rammed into the top of the machine. It also didn’t tell us much except that I have inflammation at the base of my second toe. Great. Fucking great. The ortho thinks that it’s probably referred pain from my back (which other doctors have ruled out after looking at my back MRI), but he’s going to do a steroid/pain relief injection at the base of the second toe once it’s been approved by the insurance. I hope to God that fucking helps because otherwise I will cry.

My Achilles tendon is still giving me problems as well. The shockwave treatments don’t seem to be helping. I think the last one made it worse. I have one more scheduled and unless they think more will make a huge difference, I think I’m going to quit doing them and find a way to just live with that pain.

All of this is to say that I’m not dead. I’m just trying to take some time to take care of myself, s my hibernation will continue a little while longer. I’ll be leaving my job at the end of this month so that my health is all I’m focusing on. I’m going to use our 2-month trip to the US this summer to relax, get in a good head space, and try to help my body as much as I can. When I get back I’ll figure out what to do about making money to pay my stupid fucking student loans. I hope by then I’m feeling a lot better.