Good Grief: My Health Saga

I’ve been meaning to write this post for a while. I’ve got some crazy health stuff going on and so many of my people have wanted to be updated. I thought that I could maybe just post updates on here and then it would reach everyone at once.

I’ll start at the beginning. It’s long, so if you know this part or don’t want the details feel free to skip around…

In March of 2016 I hurt my back at Orange Theory. It felt like it always felt when I would “throw my back out,” but this time I kept not getting better. Finally, at the beginning of June 2016, I went to a doctor. He told me that I had actually torn the ligament that connects my hip to my spine. He was hoping to avoid surgery, so he prescribed physical therapy and a three-week course of prednisone (steroids). I am one of those lucky (insert sarcasm) people that, as soon as I even think about skipping a workout, I gain a pound or two. I continued eating pretty healthy, but I was gaining weight like it was my job. To put it in perspective, I gained 7 lbs. the month that I did the Whole 30 (like paleo, but less fun and more intense, and people usually lose 10-ish pounds when they do it). I was finally cleared to get back to working out in September. I was so stoked, because I was thinking that it would take time, but I should start to see a downward trend on the scale.

Except I didn’t. I kept gaining at the same rate. In October I went back to the doc. She ran a few tests, and one of them came back with results that looked like Cushing’s disease. It’s a super hard to diagnose, super rare endocrine problem that is sometimes brought on by steroids, sometimes brought on by a tumor either on the adrenal glands or the pituitary gland. It has to do with out-of-whack cortisol levels, which is your “fight or flight” mechanism. Symptoms include weight gain in a particular pattern (mostly in the belly, with skinny arms and legs, but a round face and a “buffalo hump” on the shoulders), headaches, adrenal fatigue, and body acne, so basically it’s just a whole lot of fun. I was referred to an endocrinologist, who explained to me that it takes time to diagnose, because the tests have to be judged against each other, basically. So we would have to run tests, wait a bit, and run more. Then, my insurance company said that even though they had originally said they were, these doctors weren’t in-network, so they weren’t going to pay for them. That meant I had to start with new doctors. By the time I finally got to see an in-network endocrinologist, it was the beginning of May 2017.

The new doc, which I actually liked better than the other one, told me that there was no way that this could be steroid induced, as the last endocrinologist had suspected, because my last dose was in August 2016 and my cortisol levels would have started to improve immediately. That left tumor caused.

In June I had an MRI. Let me just take a minute here to thank Jesus for Valium. MRI’s were discovered, I think, to use in place of being drawn and quartered. So, I got to get tortured for about an hour and pay almost a thousand dollars for it. FUN! Back to the story, though, when the results came back they had found a small adenoma (tumor) on my pituitary gland (in my brain). I heard brain tumor and did a minor freak out, until I realized that it was non-cancerous and I also remembered that I was widowed at 30 and survived so I’m basically resilient. The kind of tumor that it is occurs normally in 10% of the population, so they needed to run a few more tests to make sure that it was Cushing’s disease before they would recommend surgery, the only cure for Cushing’s. If it isn’t causing Cushing’s it can just stay in there, because in most people an adenoma like mine is totally harmless and it’s not a good idea to cut into my brains if it’s not absolutely necessary.

There are 3 types of tests for Cushing’s (blood, urine and saliva), and I needed two out of three to come back with abnormal numbers. The blood numbers are always abnormal, so that was good (I guess?). We did another round of urine and saliva tests. That’s a treat let me tell you. This might be over sharing, but the urine one requires keeping all of my pee for 24 hours. In the fridge. Gross. In the end, the results on one were totally normal and the other weren’t normal, but weren’t abnormal enough. The endocrinologist told me that my case was basically too crazy and she didn’t know how to treat me. So, I could do one of two things. I could wait a couple of months and then we could run the tests again, or I could go to a research facility. I didn’t want to wait.

At that point it was July, and I started trying to get my insurance to cover a research facility/specialty clinic. Trying to get the clinic and Cigna, my insurance, to cooperate with each other required being on the phone with one or the other of them daily, sometimes both, from July until the last week of September. After all that, Cigna’s decision was that they wouldn’t cover an out of network doctor because they had people in network that could treat me. (Really? Cuz the in-network doctor said she couldn’t treat me.)

I did a number of things. I cried and threw a fit. I filed a complaint with the insurance commission. I went back to my in-network endocrinologist to formulate a plan.

She told me that I should just wait for open enrollment and start with a new insurance company for next year. I am going to do that, even though it infuriates me because it means that those f*ck3rs at Cigna win. She also ran another set of tests, now that it’s been a couple of months (that was her plan B back in July). I’m still waiting on results.

And that brings us up to date. It’s frustrating. It’s time consuming. It makes me feel impotent. And, I already don’t feel good. I’m exhausted all the time, and I feel fat (at this point I’ve gained about 45 lbs total, which is more than 1/3 again what I weighed back in March of 2016 when this whole thing started), and I always have a headache. I’m pretty sick of it and just want to get better. There are things I want to do, like go out at night with my friends (with adrenal fatigue, I'm always too tired). Like put on my socks (it’s hard with all this extra weight in the way!). I don’t give up. We’re gonna get this thing figured out.