Spoonie Life Complication #2: How much is too much research?

Spoonies spend a lot of time at the doctor. I have to go every three months for blood work and follow-up to make sure everything is under control. That’s for non-acute issues. If I get sick in the meantime, I have to go back.

One of the problems I’ve had, and I know other Spoonies have faced the same issue, is that we have to advocate for ourselves. It can take a while to get a diagnosis with something like fibromyalgia or Hashimoto’s. It’s frustrating because we know something is wrong, but we can’t get treated for it. So we stay sick. And we get pissed off. So we go to the internet.

Now, I know that Dr. Google is no substitute for a real medical opinion. However, the internet is a wealth of information, and we can get access to medical research and studies somewhat easily. For a frustrated person, this can be amazing. We’re able to arm ourselves so we can ask our doctors better questions. Let them know that we are invested in our care.

At some point though, the question is how much is too much research? I’ve recently been to have a new issue checked out. I got weird vibes from the radiologist when she went from being chatty and friendly to saying “Your doctor will tell you what it means.” Well, okay.

After meeting with the doctor, who indicated things were mostly fine except for one issue, I went home a touch confused. So I hit the internet. Mostly what I’ve done is make things harder for myself when really all I can do is wait and see what happens further down the road.

I want to be well-informed, but at the same time, I don’t want to worry needlessly. It’s just a rough position to be in.

But, it’s a pretty common part of being a Spoonie.

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.

2

I’m a PERSON, not just test results

Yesterday I was reduced to numbers:

  1. TSH – 1.65 (within range)
  2. Free T3 – 2.09 (within range)
  3. Free T4 – 1.01 (within range)
  4. TG Antibodies – >800 (way out of range)
  5. TPO Antibodies – 45.5 (way out of range)
  6. A1c – 11.4 (so far out of range the doctor is panicking)

The first 5 numbers relate to my thyroid. This is yet another set of lab results that confirm the diagnosis of autoimmune thyroiditis (a.k.a. Hashimoto’s) (that’s the antibodies – shows they’re there to attack the thyroid). However, the rest of my thyroid numbers are within the “normal” range. So yet again, the endocrinologist won’t put me on a thyroid medication. This isn’t the first time I’ve heard it from him and also not the first time I’ve heard it from an endocrinologist. They’ve all said it.

I know what you’re thinking. If they’ve ALL said it, they must be right, right? Au contraire, mon ami! I told the doctor yesterday that I’d done research and found studies that confirm that treating Hashimoto’s patients with thyroid medication can slow the progression of the disease and alleviate symptoms, even if the rest of the labs are in the normal range. When I mentioned that though, he said there were no such studies.

He was more concerned about my A1c, which is a number that reflects my blood sugar over the past 2-3 months. I knew that number would be high. I stopped taking the diabetes medications because they were causing diarrhea that was preventing me from getting an uninterrupted night of sleep (which is crucial for my overall health, I’ve learned).

My complaints to him are that I’m constantly fatigued, that I have trouble focusing and concentrating (brain fog), and that my menstrual cycles are all messed up. All of those are symptoms of thyroid problems.

He chooses to focus only on the fatigue – which can be caused by poorly/uncontrolled diabetes. I have repeatedly told him that even when my diabetes was controlled, I suffered from fatigue. Also, uncontrolled diabetes doesn’t explain irregular menstrual cycles. I’d already had an appointment with a doctor to examine my lady garden, and there’s nothing there that would cause problems with my cycles. In the past I’ve had hormone testing done and it was always normal. So gee, what might it be?

He said that there are 7 causes of chronic fatigue – diabetes, thyroid, PSYCHIATRIC, adrenal issues, and some others I can’t remember. I’ve had adrenal testing done by the second endocrinologist I saw, who also decided my thyroid was not an issue. What this doctor seems to be missing is that depression is a symptom of Hashimoto’s. I’ve never heard it as a symptom of diabetes though. Wonder why that is.

I am tired of going to the doctor and not being listened to. Having my symptoms ignored. Having the doctor completely discount my telling of my history. It’s bullshit. I know that I don’t have a medical degree. However, I am an intelligent human being capable of doing research. If what I’ve found isn’t legitimate, the doctor should tell me that she or he has seen the study I’m referring to and explain WHY it’s not legitimate. That’s the professional thing to do.

What also floors me is that they don’t ask about any of my other medical history. I find it a bit ridiculous that the chronic pain and inflammation from my back and leg/foot don’t have an effect on the rest of my body. Given that we know that chronic pain changes brain wiring, it seems likely that it affects a lot of other things as well. Of course, this doctor is clearly uninterested since he actually tried to do a reflex test on my bad Achilles tendon. I’m not sure why the inflammation and scarring on it didn’t put him off, but whatever. Thanks, dude.

What happened to practicing holistic medicine? I totally understand the need for specialization, but it seems like it’s better placed in research, rather than clinical practice. There needs to be some kind of feedback loop on this – someone researches, using data provided by clinicians, and then the two work together to figure out what’s best for patients.

There are doctors who treat patients and their symptoms, rather than just the lab results. When it comes to patients with Hashimoto’s, the numbers don’t often tell the whole story. This is why there are boards, websites, and books dedicated to people like me, who leave their doctors feeling like they’ve lost their minds. We go from doctor to doctor, until we find someone who will listens to us and our symptoms, rather than relying solely on labs for answers.

I know I didn’t help myself by going off my diabetes meds, but when you’ve hit the point I have, it feels better to do it that way. The meds were causing massive stomach upset and ruining my sleep. Past experience taught me I wasn’t going to feel good even staying on them, so why feel worse?

Perhaps I should have gone to medical school instead of law school.

 

1

I Give Up

No Cast

Went back to the hospital this morning – no dice. They told me that I need to go back to the doctor and try to get an admission some other date. They also recommended trying surgery at a different hospital in another city. The main hospital apparently gets quite filled up with emergencies.

I won’t lie, I don’t get how all of that works. It makes no sense to my brain. But, nothing I can do about it.

I know from my first meeting with the doctor that he has one more surgery date this month – June 16th. However, I have no idea whether I’ll be able to get an appointment with him before that date. I also know that he won’t be operating during Ramadan – so nothing from about June 17th through July 18th.

We’re supposed to be heading out to Brazil about July 18th. A surgery date of June 16th would make that leave date impossible. A surgery date after Ramadan makes the trip to Brazil impossible. Mr. Lyndsy hasn’t been home in years and I know he’s really looking forward to it.

Everything about foot drop has been impossible to deal with. From the physical therapist making things worse, to holding off when the neurosurgeon said to wait, to the first doctor I saw here this year. At this point I just wonder if I’m just supposed to leave it as is and not try to have the surgery.

Then I think about how hard it would be to live without trying surgery. Driving hurts. Walking hurts. Surgery *might* make those better. Or it may not work at all.

All of this depresses me. A lot.