The help I didn’t know I needed

January 29, 2020

The last week and a half have been really rough. But I’m trying to learn from it.

First there was a minor injury. I’m still not sure how it happened, I just know the pain was intense and different than what I typically experience. That lead to a visit to the doctor followed by an MRI later that day. I was out of the house, in pain, rushing around, for 8 hours. Not surprisingly, between that rough day and the pain, that lead to increased adrenal fatigue.

Here’s where I made my mistake: I didn’t take an extra dose of my adrenal medication on that day when I was in the most intense pain. I didn’t take it on the day of the doctor visit and MRI, either. Nor did I take it in the days following. I kept thinking that if I got some rest, I would be ok. I was wrong. Finally, I took that extra dose two days ago and I am finally feeling like my old self again. I’m still in a lot of pain, but at least the fatigue isn’t dragging me down to the point where I can barely function. I am once again able to answer emails, run small errands, and write this blog post.

2020-01-29 12.36.18

So now it’s time to learn from my mistake. You see, I thought about taking that pill last week, but I dismissed the idea. The fatigue gave me brain fog, and I couldn’t think clearly enough to realize that it was what I needed most. I told myself that I would be ok with some rest even though I should have known from past experience that it wouldn’t suffice.

Meanwhile, I saw my mother twice that week. The second time she commented on how much better I looked. I know I didn’t look that good, so I must have looked truly horrible the first time. Friends who don’t usually check on me were texting daily to ask how I was feeling. Other people knew I was struggling, even if I didn’t see it myself.

So this morning I sent a text message to a few select people: my parents, several friends who are my chosen family, and a couple of other close friends. These are the people I feel are most likely to know when I’m suffering from adrenal fatigue. It started with, “Hey folks, I want to ask a favor.” I went on to explain my mistake in not taking my adrenal medication sooner and why it happened: fatigue leading to brain fog which affects my judgement. Then I continued, “So the favor is simply, when I say that I am struggling with adrenal fatigue, please remind me to consider taking some extra of the medication.”

Ideally, I would make myself a note and leave it someplace that I would see it, but the truth is, when I feel this bad, I won’t see the note. Or I will see it and ignore it. I spent two days doing little except watch tv. I could barely get dressed. In that state, I can’t trust myself to be the only one to look out for me. That is why I ended the message with, “At the end of the day, of course this is my responsibility. But since you are the folks I am most likely to talk to about ongoing symptoms, I wanted to reach out because sometimes I need a bit of help. Thanks for being awesome and supportive in general!”

I think this is something we can, and possibly should, all do. It is especially important for those of us who live alone, or who live with others who are not supportive. Find one or more people in your life who you can trust, and simply ask them to remind you to do a couple of specific things when they see you struggling. Maybe you want to give them a short list, and ask them to send it to you. Maybe, like me, you only want to ask them to remind you of one thing. This isn’t the kind of thing you will ask of everyone you know, but of just a select few who know you well, who support you, and whom you trust.

Part of self-care is asking for help. Today, I took that step. What about you?


My new gym routine

January 1, 2020

If you have been reading this blog for any length of time, you probably find this title strange. But it’s true, I have a new gym routine!

About 10 years ago, I got into my first gym routine. I had quit my job, and decided to take good care of my body during my time off. I found an inexpensive gym near me where 2 or 3 times each week I would lift weights as my physical therapist had taught me and do some pedaling on the recumbent bicycle. It went well until I got a job.

I tried to keep it up. I went to the gym a few times on lunch breaks, but it was too rushed. I went in the evening a few times, but I was so tired. Mornings weren’t an option; it was hard enough to get to work on time. I went less and less often before finally giving up.

I didn’t know it at the time, but my body was suffering. Untreated Celiac disease, improperly treated hypothyroidism, and the start or worsening of adrenal fatigue were taking their toll. Eventually I left my job and went on disability benefits. So many days, it was hard to walk to my car. The gym was out of the question.

This time around it’s totally different. My approach is, something is better than nothing. This won’t be true for everyone, of course. For a lot of people, even tiny bits of exercise will make them worse. I’m pretty sure I was at the point for a while. Still, I am remembering 15 years ago when I was having a tough time, and a friend encouraged me to lower the bar and do a lot less. Instead of taking a long walk, or even aiming for a shorter distance, I set a time limit. My goal was a 10 minute walk every few days. That’s it. Five minutes down the street and then turn around. I could walk as slowly as I wanted and needed to. This was a great start, and I found myself walking faster, going farther, in those 10 minutes. I no longer saw snails passing me by. Eventually I increased the time to 15 minutes, then 20. Of course, that was a long time ago, and my abilities are quite different. Still, I remember slowly building up from something so tiny.

For a long time now my medical practitioners have been encouraging me to exercise more, especially because they know that there is a gym in my apartment complex. Each time I tried, though, it went badly. Some days I was ok, but others I was exhausted and felt horrible for the rest of the day and sometimes even the following day. Since I never knew how I would feel, going to the gym felt too risky, so I often skipped it. If I had plans in the afternoon, I wouldn’t go in the morning. It was a big hassle. I had to change my clothes, get over there, lift a bunch of weights, ride the bike, get home, and shower. It was a lot!

This time is different. I figured something was better than nothing. Last year an occupational therapist wanted me to do a specific set of weights. Under her supervision it went well, but when my sessions ended and I had to keep it up on my own, I couldn’t, for all there reasons I just gave. I would have a setback after working out, then by the time I went to the gym again weeks (or more) later, I had to start over at a lower weight again. It was incredibly frustrating.

Then I started to think, since that one exercise is what I most want to do at the gym, what if I do only that exercise? No others. I wouldn’t exhaust myself because I wouldn’t do other weights or any cardio. I wouldn’t have to change my clothes; I wouldn’t be exercising my lower body so jeans and snowboots would be ok, and I wouldn’t be sweating. This also meant that I wouldn’t have to take a shower afterwards. I could even do my exercise on my way home from someplace.

For the past two months, I have been going to the gym twice a week. If I need to move a day because I don’t feel well, that’s fine. There’s no pressure. I simply want to keep going. I am only there for 5 minutes, if that. Yes, I feel self-conscious sometimes when folks see me walk in, and then see me leave mere minutes later. But you know what? It’s better than not showing up at all!

I was supposed to go to the gym today, but I strained a muscle in my neck and I am worried about injuring myself. There’s no guilt. No concern. I will go when my neck feels better. If I miss an entire week, that’s not the end of the world. I will not let it derail me. I hope I can get there tomorrow, though, because I enjoy the feeling of accomplishment, even though it is too soon to notice a big difference in my strength.

I am not doing a lot compared to my peers. This is small stuff. But you know what? I can’t get to the big stuff (ok, the slightly bigger stuff) without starting small. Some people can, but I can’t. That’s ok. And even if I never do more than what I am doing right now, at least I’m doing something. This is manageable, which means I’m actually doing it. This is my longest gym-going streak in the past 10 years and I plan to keep it up. Wish me luck!

Meanwhile, could this approach apply to something in your life? Maybe it’s exercise, a dietary change, cleaning your home, making new friends, or something else. Is there some way that the “something is better than nothing” approach could help you, too?


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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