Crazy Health Stuff- Update 5

I’ve been meaning to post an update for a while now.

For those of you just tuning in, my crazy journey began about two years ago with pretty serious unexplained weight gain (I’ve gained more than 50 lbs.), along with several other health things, like I was exhausted all the time. This led me to see a doctor, then I was referred to a specialist, then I had some major health insurance woes, then I was diagnosed with a non-cancerous pituitary tumor, then I finally got the right insurance that took affect in January of this year. I’ve done multiple rounds of tests over the last two years that make them think that I have something called Cushing’s Disease, an endocrine disorder that means that my body is producing too much Cortisol. Cortisol is responsible for fight or flight—so my body constantly stores any calorie as fat because it’s afraid I’m going to starve, and also I’m always exhausted because I’m constantly revved up like I’m in flight mode. It also includes things like body acne. It's really a treat, let me tell you.

Here’s the latest:

Last time I reported that the doctor needed me to stop taking one medication and then re-take a urine test. It came back with the same results that I had while on the meds, indicating that the issue has nothing to do with said medication.

When my doctor called to give me those results she told me that they would schedule the more invasive test, and that I had been the topic of discussion at their monthly conference. Apparently, the whole group of specialists and surgeons and everyone involved in the pituitary clinic at the hospital get together and talk about the crazy cases once a month. I have it on good authority that for me to be their topic apparently means I’m famous.  I will happily sign autographs.

I'm excited to go get my head examined!

It took a few weeks to get the test scheduled, and I finally had my test on Wednesday, which was yesterday. It took pretty much all day. Here’s how I understand that it works: They sedated me, and then inserted a catheter into my veins and took fluids from around the tumor site. Then, they injected something else in the pituitary gland (in my brain, where the tumor is) and took more fluids. This will tell them for sure if the pituitary tumor is causing all of the cortisol issues in my body, or if there is some anomaly elsewhere.

The doctor performing the test was this cute old man in his late 60’s, and he looked like the dad in “Bread and Jam for Francis,” which was one of my favorite children’s books about a family of badgers. As usual, the doctor told me after the test that I had “weird anatomy” in my brain. I’m always the rare case that they’re like, “He-ey, I’ve never SEEN this before! Do you mind if I get my med student/colleague/mother-in-law in here to take a look at this?” I guess there’s one part that usually only takes seven minutes and it took him 32. The whole test part took about two-ish hours and then I had to be in recovery for four-ish hours. I had to have a “responsible adult” pick me up, so Ellie was my hero as usual. I think that they asked her things like, “Do you have a good job? Do you pay your taxes? Have you kept your dog alive? Do you make your bed?” and stuff like that to make sure she is responsible. It’s a good thing Ellie was there because I was pretty out of it. I don’t remember much of recovery or of the rest of the afternoon. The only part that I really remember is asking Dr. Francis’ Dad if I could see what it looked like inside my brain, and he texted me photos. It’s pretty cool.

Inside my brain from the side (that's my cartilage piercing in my right ear that you see in the photo). 

Inside my brain from the center. My nostrils look like eyes on a scary moth creature.

I’m pretty sore today, and I have a crazy headache. But, I have headaches all the time so there’s no telling if this is from the test or just a stupid headache. My guts do feel a little bit like someone tried to drive something up to my brain via my veins.

Mostly I’m just stoked to finally be close to getting some real answers. I’ll keep you posted!

Father, in "Bread and Jam for Francis"

Crazy Health Stuff- Update 4

Yesterday afternoon my fabulous mama hung out with me at the doctor’s office. All. After. Noon.

I had an appointment with one of the pituitary specialists in the clinic that I went to in early January. Since that appointment in January I have done two rounds of the three types of cortisol tests, not because it would have been necessary to do two sets, but because the orders were wrong on the first set. Lucky me.

After the last appointment I was super discouraged, because I felt like they were telling me that I probably didn’t have Cushing’s, and it really occurred to me for the first time that it was possible that they weren’t going to be able to figure it out and fix me. That I may just have to live like this for the rest of my life.

Yesterday the pituitary specialist seemed to think that Cushing’s is still the best possibility for what I have. She told me I looked “cushionoid.” Which is, I think, a real word.

So, even if this requires surgery, which still completely freaks me out, it at least feels good that they have a clue.

Next steps mean that I have to quit one of my medications for two weeks because they’re just a little afraid that it’s affecting the cortisol levels, and then redo one of the tests. If that comes back with consistent results to the previous tests, then they will do one more test before surgery. They’ll go in to the area around the tumor sight, and take fluids from there. As I understand it, if those show high cortisol, then they will do surgery.

So, that’s the skinny. At this point I don’t even know how to feel. I think I feel cautiously optimistic, even if I panic when I think about surgery. I think it feels good to know that they have a clue about what’s wrong with me.

I’ve spent quite a bit of time at LabCorp for these tests. On Valentine’s Day, I went in early to have my blood drawn, and I ran into this guy. He had a seriously awesome mullet, and when he took his jacket off to reveal a cut-off t-shirt and suspenders, I thought I should maybe ask him out. I settled for taking a selfie with him in the background.

Health Saga Update- Number 3

I had my doctor’s appointment last week. I have such mixed feelings about it that I didn’t feel like I was ready to write about it.

Here’s what happened:

When the appointment began, I gave the doc a brief history and then told him the place I was at with the last endocrinologist (she thought I was ready to see a neurosurgeon). He said, “I don’t think we’re there yet.” When he looked at my test results they looked too normal to him. And, I think because he was trying to encourage me, he told me some horror stories about the surgery. It didn’t quite have the affect that he was hoping for, though, because I think that surgery is still really likely in the future, now I’m just completely freaked out about it instead of not scared at all.

I feel like I’m painting him as a monster, and he wasn’t. He was actually nice and compassionate, and I liked him. He just didn’t tell me what I wanted to hear. He also said that he would like me to see one of the more experienced doctors in his clinic (two of the doctors there are world-renowned), and that he wanted to run the tests again. So I spent another day sitting at home, keeping my pee in the fridge (for the fourth time in a year). I wonder how many more times I have to do that, because, gross. I turned in the “specimen” along with a saliva test yesterday, and am doing the blood test this week. I should have the results in a week or two at the latest.

I asked him what else it could be if it wasn’t Cushing’s Disease. He offered some suggestions, but, (at least what I heard him say was) that sometimes depression can look like this, and had I been depressed? “Actually, no.” I said. Then he told me that it’s a lot harder to take weight off then it is to put weight on. That was when I started to lose my mind. I understand that he would think that. I know that I used to judge people that looked like me all the time. I just didn’t understand what they could be going through. So, while I felt compassion for them, I think that in the back of my mind I thought they were lazy and undisciplined. If they would work out and eat right, it would get better. So, I told him that. I told him that I knew that I would always struggle with my weight because I was genetically inclined to be overweight. But, most of this weight was put on with me eating 1200-1300 calories a day (and I could have shown him my food journal) and working out five days a week. I think he believed me, but that had pretty much exhausted his ideas for what was wrong with me, so it feels like a step back, since I have no answers and before I felt like I did (the answer was: You have Cushing’s. You need surgery.)

The plan moving forward is to see what the results of this round of tests are, and then he and the other doctors in the practice will talk about it and then get me scheduled for an appointment with one of the more senior doctors. So, I’m overall really discouraged, but I do feel like I’m finally at the right place so that moving forward I will actually see some progress.

I feel like I should also give a shout-out to Ellie, who came with me to the appointment even though she had food poisoning and was trying not to puke the whole time (she made it!). I’m so very lucky to have such amazing support.

Sorry, that was a lot of words to say that nothing happened. But that’s the scoop and I’ll keep you posted.

Also, I’m starting back at school on Friday. When I was planning for a surgery I decided that I would only take one class, and it’s Comp. So maybe I’ll have some fun writing samples to post on here. Love to all of you!

Health Saga Update- Number 2

There has been so little movement on my health stuff since October that I haven’t bothered to update here. I still have very little to add, but thought I’d at least let you guys know that I haven’t fallen off the face of the earth.

I was supposed to go see a neurosurgeon last October, but between the surgeon and my insurance I couldn’t get an appointment and I honestly didn’t try that hard. I knew my insurance would change in 2018 and that I would want to see a surgeon from the new clinic. I finally have an appointment on Wednesday at the endocrinology clinic that I tried for months to go to, and they’re in network with my new insurance plan, so hopefully things will get a lot easier. It still feels like I’m going back a step, but now whatever they recommend should actually be feasible under the new plan. Fingers crossed!