Worried about getting medical care

June 19, 2020

I have been very fortunate: so far, I have been able to stay isolated. I leave my apartment for occasional walks, wearing a mask and keeping my distance from people. The only indoor space I have entered is the main building of my apartment complex where I have gone a few times to pick up packages; even then, I have been able to keep my distance from people. I have even been able to have short visits with my parents. We stay outdoors, at least 10 feet apart, wearing masks. It’s not ideal, but I’m very grateful for those visits. I have been very lucky, but how long can that last?

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From the start I knew I would likely break isolation for medical treatment. I didn’t know when or why, but I figured that would be the reason and it looks like I might be right. Frankly, it’s a bit shocking that I have been able to go for 3 months without in-person medical treatment. I am feeling the effects, of course. My muscles are spasming, I haven’t gotten my period in more than 4 months, my knees are so inflamed that my knee braces no longer fit (those marks on my knee are definitely not ok!), and I am pretty sure that I have increased inflammation throughout my body. It’s not good.

On top of that, I am due for a lot of followup blood tests, one doctor wants me to get xrays, and I can not get the new orthodics that I have needed for months and which insurance will finally cover as of last week. Some of the blood tests I should get are routine. Some are following up on issues which are probably fine. But one is to follow up on something potentially serious. I should have gotten the tests done last month, but we have been waiting.

My doctors are weighing risks versus rewards, and they are not in agreement. One thinks I should get blood tests while another thinks that I should wait. One thought I should wait for physical therapy but now has changed their mind. Of course, each doctor has different considerations. My need for physical therapy wasn’t as big last month as it is now. Some blood tests are more necessary than others. Some doctors are more conservative than others. Some are more aware of my risk factors than others.

I am not as high-risk for Covid-19 complications and some folks. Still, I am more at risk than many, and I do not want to put myself at risk if I can avoid it. Then again, my symptoms will only continue to get worse and it is not as if it is a matter of waiting just one more month. It could be a year or more before I can safely see any of my medical practitioners, so waiting might not be the best approach.

Logically, I know that now might be a good time to get treatment. After all, the numbers are expected to go up soon. Still, it doesn’t feel safe. We don’t know much more about this illness than we did in March. We don’t have any additional safety measures, either, except for wearing masks.

So I am scared, unsure, and worried that I will make the wrong decision. There is no “right” decision, though. I don’t have a crystal ball. Sooner or later I will need to get medical care and I will either become ill or I won’t but until then, the best I can do is make a guess.

I am beyond frustrated that people in my area, and especially politicians, are not taking this situation more seriously. I am watching them engage in risky behavior that could contribute to the spread of this virus for the sake of a meal at a restaurant or a haircut, while people like me are delaying important medical care. And even as I type this, I am in so much pain that could be alleviated with physical therapy. It is so unfair.

Like I said, I know that I am lucky. Many people have not had the option of delaying medical care. Some of them have been able to get care without incident, while others were not as fortunate. I look forward to the day when we can all access care without fear (or at least with much less fear) of contracting this virus.

What has your experience been like accessing medical care during this time? And where are you located? I know that the situation is very different in different countries (and even in different regions within my own country.) Please comment and share, because I’m curious to know what others are doing. Best of luck to you all!


Not missing sudden onset diarrhea

December 28, 2019

I quickly packed up my laptop, water, reading glasses, phone, and jacket, and walked hurriedly to find the nearest restroom. Sitting on the toilet, I wondered what caused this sudden bout of diarrhea, since this hasn’t happened in ages. And then it hit me: this hasn’t happened in ages!

It feels like a fucking miracle.

There were the times like this that I was able to walk quickly to the closest restroom. There were the times I was walking around outside and had to walk into stores, hoping they would let me use their restroom, sometimes begging, sometime being turned away. There were the times I was walking through less commercial areas, and wondered if I would find a toilet in time. There was the time I was in bumper-to-bumper traffic on a highway in another state, wondering if I would have to deal with diarrhea in the tall grass on the side of the road. Thankfully, I made it off the highway at the next exit, immediately found a motel, and was allowed to use the restroom. There were the times it hit me at a friends’ home, and I was embarrassed by what I thought they might hear and/or smell, not to mention how long I would spend in the restroom. There were a lot of near misses. There were a couple of times that I pooped my pants.

And I haven’t dealt with any of those in ages. In fact, the only diarrhea I have had this year has been easily explainable. It was either due to gluten or my period (maybe I will get my period today or tomorrow?) That was it.

The thing is, these bouts of sudden diarrhea weren’t short-term. This has been happening since my teen years. After 25 years of it, of course I was aware that it had stopped. I have been very aware of how much better I have been feeling, and am incredibly grateful for it. Even so, sitting on the toilet in the library 20 minutes ago, I felt immense relief and gratitude that this is no longer a regular problem for me. I still have loose stools, but not these sudden onsets where I must run to the nearest toilet. I no longer worry about it when I go out. I no longer make a point of searching out bathrooms in public places, just in case. I no longer feel the fear and anxiety of this unpredictable affliction. I feel freedom from all of that.

I am bitter and resentful that this wasn’t addressed properly 25 years ago, but I am also thrilled that it seems to be resolved now. I hope that it never returns.


Was it all Celiac to begin with?

November 16, 2019

The earliest potential Celiac symptoms I remember began when I was 12. The first time a doctor suggested that I go gluten-free I was 32. Hmm. A bit of a problem there?

I went to the doctor for the extreme constipation I had as a child. I drank a lot of disgusting prune juice and still had rare, difficult, painful poops. Eventually that seemed to resolve itself. End of discussion.

A year or so later I had unexplained joint pain. I was told it was tendonitis for a long time but even the doctors had to admit that didn’t seem to fit the type of pain I had. I was told to wear braces on my wrists. The pain came and went. They didn’t know what else to do. I spent many years trying to figure out this pain but as far as they were concerned, the discussion was over.

As a teen I had horrible stomach pains, nausea, and diarrhea but had no idea how abnormal this was and told no one for several years. Eventually I did talk to a doctor. I asked to be tested for lactose intolerance. I was told there was no such test (a lie!) Instead, the doctor told me to keep a food and symptom journal. After a few weeks I gave him my notes. He told me that he showed it to a nutritionist and that it wasn’t lactose intolerance. End of discussion. No further examination of my obvious problems. A few years after that I was diagnosed with irritable bowel syndrome. I did some research and saw that my symptoms didn’t quite align with IBS, but it was the only diagnosis I was given, so I went with it.

Later in my teens I was far too thin. I occasionally skipped dinner. I was diagnosed with anorexia despite the fact that I ate breakfast, lunch, and snacks every day, I only skipped dinner 2-3 times per week at most, I had digestive problems, and I was so alarmed by my own weight loss that was the one who went to my parents with a concern that something was wrong and asked to see a doctor. The doctor put me on a high calorie diet. I eventually gained a little weight. End of discussion.

Around this time I was diagnosed with depression. I was sent to therapy that did nothing. I was put on anti-depressants with horrible side effects. After less than a year I was taken off of the medications. The depression was magically gone. End of discussion.

And lest anyone think that my medical history fell through the cracks, all of this occurred at one medical facility, where all of the doctors could see all of my records. How did they all miss this?!?

Was this necessarily Celiac disease? No, of course not. But when a child has constipation, diarrhea, weight loss (I was down to 89 pounds! I’m short, but I should never have lost that much weight – I should have been at least 100-105 at that point), joint pain, depression, nausea, stomach pain, and more, how did they not at least consider this possibility?!? This was the 1990s and while Celiac wasn’t as well known then as it is today, there was plenty of awareness. The doctors should have known.

An interesting thing has happened in recent weeks. After some time on hydrocortisone, my brain fog has been lifting and I am thinking more clearly. I have less fatigue. With that layer of haze lifted, I can better feel and understand what is happening with my body. I can think it through more clearly. And I wonder if maybe all of my problems actually stem from Celiac disease.

As regular readers of this blog know, I have a long list of diagnoses. But the thing is, a lot of them are comorbidities with Celiac. Many others are known to be secondary or tertiary issues. For example, I have polycystic ovary syndrome, but after many years of struggling with PCOS symptoms, they finally went away once I was on a proper dose of the right thyroid medication and fully gluten free. I now get my period at least every other month and I rarely have super heavy bleeding. I was recently diagnosed with SIBO, but it’s known that small intestinal bacterial overgrowth is more common in folks with Celiac. My digestive issues, aside from some SIBO symptoms, have all completely resolved now that I am 100% gluten free. I still have constant joint pain, but it has improved greatly thanks to treatments and, I suspect, being gluten free. My adrenal fatigue, one of my most disabling conditions, was caused by long term chronic illness. My Hashimoto’s thyroiditis is a comorbidity with Celiac.

All of this makes me wonder, what if I had been diagnosed with Celiac at age 12 (or younger)? If I had gone gluten free back then, could this have been avoided? Maybe the joint pain would have resolved. Maybe Hashimoto’s would never have developed? Mostly likely, if the Celiac and Hashimoto’s (if I even had it) had been treated properly to begin with, adrenal fatigue would have never begun. That means I would have never become too disabled to work.

That’s hard to think about. This was avoidable. Somewhat. I would still have had problems, of course. I would still have had to avoid gluten, which would have probably been a lot harder as a child in the 1990s than as an adult in the 2010s. I would have still gotten glutened and had to deal with the fallout. I would still have had autoimmune disease and would likely have had some fallout from that; some folks with Celiac feel fine, but others don’t. My health would not have necessarily been perfect. But it would have been a lot better.

This is only speculation of course. I can’t be sure that all of my health issues stem from Celiac. Over the years I have had several other theories about how my health issues all connect. Each one has felt closer to the truth, and this one does as well. I don’t know if I’m right, but I suspect that I’m at least close.

We need better screening here in the U.S. and around the world. Estimates of folks with undiagnosed Celiac are high, as much as 90%. I don’t want to see others live with what I have had to live with if it can be avoided. And I’m one of the lucky ones; some folks die from undiagnosed or late diagnosis of Celiac. If you or someone you know has several of the 300+ Celiac symptoms, please consider testing. You can see a shorter list here, but it is missing a lot of categories. And if you have experienced something similar to what I have described, please comment below. It is important to gather these stories in order  to highlight the need for more testing and awareness.


When even the good things cause stress

October 27, 2019

The thing people forget is that even good things cause stress. Like the party I recently threw.

We talk about stress as an emotional condition that’s bad and must be reduced. That’s not untrue, but it’s not the full story, either. When it comes to adrenal fatigue, all stress can be a strain on the body. I explain it to people by saying that winning the lottery could make me very sick, and I believe that’s true (not that I’ve had the chance to find out, unfortunately.)

We overlook that there are different kinds of stress. There’s emotional stress and physical stress. There’s stress from good things and from bad things. Obviously I would rather have stress from winning the lottery than from the death of a loved one, but my adrenals will suffer either way. They just can’t produce the necessary hormones to handle the stress.

I feel it if I don’t get enough sleep, if I walk too much, if my body is inflamed, or if I’m dealing with some other form of physical stress. When the stresses are both emotional and physical, it’s especially rough. That’s what happened earlier this month. Several friends and I threw a surprise party for a friend. The party planning was stressful. Then the night before, I slept horribly. Some of it was from worry over the party going well, but a lot of it was from pain, probably due to the rainstorm we had. I also had a friend staying with me for the weekend, since she came from out of state for the party. I was thrilled to have her visiting me! I love her, we’ve been friends for 30 years, and I wanted to hang out with her as much as possible. But I was also exhausted, and needed to rest.

It is so hard to balance my emotional and physical needs in a situation like this. Thankfully, I was surrounded by understanding people. I’m also very thankful for my current coping mechanisms. I used some stress-relieving techniques from my therapist. I took an extra dose of my adrenal medication. I used medical cannabis. I laid down for half an hour in the afternoon to just quietly breathe and relax my body. Between the physical rest and the emotional break plus the medications, I began to feel better. My friends didn’t expect me to do as much physical setup for the party, so I was able to sit more.

In the end, the guest of honor had a great time, we all had fun, and everything worked out well. But it was still nerve-wracking. I find it frustrating that even good things can be too much for me. I wonder if I get married some day, will I even be able to have the large wedding reception I’ve always wanted? Will I have the energy to dance at my own wedding? Probably not, and that saddens me so much. Of course, I am also single, so that’s a big hypothetical! Still, the point is, will the good things be so stressful for my body that I can’t enjoy them? Right now they often are. I just hope that won’t always be the case.


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