The all-too-elusive “day off”

December 4, 2019

I don’t have a job, but I work damn hard. Every day is long and full. Some days I go to medical appointments; some days I see friends, though not as often as I would like; some days I stay home and work on a long list of tasks. None of those are relaxing. Even when we don’t work traditional jobs, we need days off. As I sat down to write today, this felt familiar, so I did a quick search on this site and found that I’ve written about this before. In fact, I’ve written about this several times, and the past two were last December and the December before that. Hmm. That might be telling me something.

2019-12-03 09.08.11

I have been making more of an effort to give myself space for relaxing time. In August, during a couple of abnormally not-incredibly-hot weeks, I took several afternoons to sit outside and read a book or work on some writing. It was lovely. But a full day? That was rare.

This week we got a snowstorm. In the Boston area this isn’t odd, but it doesn’t usually come so early. I saw the forecast, looked at my calendar, and decided that I needed to take advantage of the strange weather. I was exhausted. I needed a break! And I had a big week coming up, too.

So I took a day off. I didn’t feel too sick to do things; I simply didn’t do them. I puttered around the house. I did some laundry, but now that I have laundry in my apartment (such luxury!) that’s not much of a chore for me. I chatted with a friend via video for a couple of hours. I spent at least a couple of hours reading a novel. I baked cookies. I watched the beautiful snow falling outside, clinging to trees and coating cars. My plan had been to spend a few hours watching tv while crocheting in the afternoon, but somehow I never found time for that. I still did it after dinner, though, like I do almost every night.

Several times during the day, I felt at a loss. I was supposed to be doing something, right? What was I supposed to be doing? What was it? I kept looking at my “to do” list for the day, which is always on my desk. But this time, it was mostly empty, just containing reminders to clear snow off my car, read a book, relax.

I somehow filled the day, and felt so good by the end of it. I needed that. The next day came part 2 of the storm and I wanted to take another day off, but I had too much to do. Still, it was a reminder that I need this. We all do. We need days when we aren’t trying to get lots done. I may not do a lot in a typical day by most people’s standards, but for me it’s a lot. It’s now 3pm and I have made several phone calls, gone to physical therapy, gone to the bank, answered some emails, eaten lunch. For me, that’s a lot, but it’s more than that: it’s the obligation. What I need is days without those obligations. Days of freedom, where I can do whatever I want, whenever I feel like doing it. Again, I think that we all need that sometimes.

Not to sound like a broken record (do people still even know what that means?) but I’m going to make an effort to take more days off. So far, I have succeeded in giving myself afternoons without obligation. Now it is time to give myself more full days without obligation. These will be days for myself, with no appointments, no plans, no lists of tasks to be completed. It can all wait. One more day won’t cause problems. It’s time. So from now on, I will aim for one day off every month. Wish me luck!

Do you take days off like this? Do you find it difficult to schedule them in, or easy to do? Please comment and share your experience with days off while disabled.


How my doctors’ office lost their phlebotomy lab

November 29, 2019

I emailed my doctor a reminder that I needed to have some blood tests repeated. When I first started going to that office, I lived less than a mile away. On days that I felt well enough, I walked there. Now I live a 30 minute drive from there, so it’s harder to get blood work done. That’s why I figured this was good timing; I had an appointment the next day with another practitioner in the office. I wasn’t prepared for my doctor’s response. It basically said, the order is in the system but they no longer have a phlebotomy lab, and it listed some other places I could get my blood draw.

WTF?

The next day, I saw the other practitioner and I asked about the loss of the phlebotomy lab. Was it temporary? Why on earth would a medical facility no longer have the ability to draw blood?

Her answer was simple and terrible: it was not considered cost effective by the hospital that was now in charge.

Several years ago, this independent facility became part of a local hospital system. This happens a lot in my area. For me this was good in some ways, because now they took my insurance, while they had not previously. On the other hand, the doctors lost some of their independence. Where before they referred patients to the best doctors they knew of, now there was pressure for all referrals to be within the hospital network. Not exactly putting patients first, were they?

This year, that hospital joined another hospital network. The hospitals are now separate, but connected. The new hospital network is bigger, though, and has more power. And the new network says that the phlebotomy lab is not cost effective. It’s not worth the money, even though it’s important for the care of the patients. How does that make sense? Isn’t the entire point of this building to provide care to patients? Apparently not.

My doctor had giving me a list of alternate places to get my blood drawn. Unfortunately, it was an additional two weeks before I was able to get to any of them. I have a car and am often mobile. Several years ago when I could barely leave the house more than two or three times each week, this would have cost me more. Some people don’t have cars, which will make many of these locations harder to access. For some, it will be impossible. What will happen to them? What will happen to all of us, as hospitals continue to make decisions that favor the bottom line over patients?

Because that wasn’t the only bad news. My practitioner also told me that the hospital is considering moving the entire staff of that building. The new location would be nearby, but due to traffic, it would be much harder for me to access. Due to less public transportation access, it would be impossible for others to access. The reason they are considering this is because it’s cheaper. The office has occupied this building for many years. However, it is now considered prime real estate, and the hospital would rather get more money by moving everyone. Maybe this will work out ok, but I do wonder what will happen to the many patients who rely on these excellent doctors and who can not get to the new place. Have they been taken into consideration at all?

This situation isn’t unique to this one office. We are seeing it more and more. There are cutbacks in all kinds of areas. What will be next? And what kind of impact will it have?

Have you experienced medical facilities prioritizing money over patients? Please share it in the comments.


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.


Grieving all over again

September 30, 2019

Chronic illness is never easy, and some days it feels harder than others. Lately, what has been getting to me the most has been my limitations, especially the ones due to Celiac Disease. I am angry and resentful that I can no longer attend an event and eat the food, friends no longer invite me over to dinner, I can’t simply grab lunch someplace while I’m out for the day. I hate having to worry about every little trace amount of gluten, having to wash my hands carefully before eating or taking a pill or getting a hair off my tongue. I can’t stand that I will never again be able to spontaneously kiss someone without first making sure they brushed their teeth.

But why now? I gave up gluten almost eight years ago. Is it because the increasing restrictions and caution came on so slowly? It took years for me to realize how sensitive I was to gluten. Even so, it’s clearly bothering me more now than it ever has before.

It was my therapist who pointed out what should have been obvious: I was grieving. It’s natural to go through the 5 stages of grief multiple times with chronic illness. After all, we don’t suffer a single loss, but many losses, which come up at different times.

Thinking about this several days later, it occurred to me something else that should have been obvious: the reason this is happening now is because I didn’t have the capacity to grieve before. I didn’t even have the capacity to acknowledge the magnitude of my loss before. I was busy surviving. I gave up gluten just a few months after leaving my job. At the time, I still hoped to return. During the next year I realized I would not be going back to work any time soon, I eliminated even more gluten from my diet, I found a naturopath, I researched new doctors for my thyroid care, I signed up for government benefits, I hired a lawyer, and more. I didn’t have time to care about giving up gluten. Besides, back then I thought it was just a matter of giving up some foods. I didn’t yet know all of the other things I would be giving up.

Over the following years, I continued to research treatments, doctors, tests, and more. I dealt with government benefits, changing apartments, and other logistical issues. I started businesses and had them fail. It was a busy time, and I remained in survival mode.

And then it slowed down, in a way. I am not looking to move right now. My benefits are stable for the moment. My health is always a concern, but with the latest addition this summer of hydrocortisone, my brain fog has lifted and my energy has somewhat improved. My health felt more stable for a bit, my mind was more clear, and I was able to think. At the same time, in the past year I have come to realize more than ever just how cautious I must be about gluten. The two came together and hit me hard, all at once. It’s no wonder I’m grieving.

Add to all of that one additional fact: the permanence. All of my health issues are permanent, but there are degrees. My pain will never go away, but it could improve. My fatigue may or may not ever go away, but there’s hope that it will, or at least that it will improve. I can work towards these goals. But when it comes to gluten, there’s no way I will ever be able to tolerate even the tiniest crumb again unless there is some medicinal breakthrough. Maybe that will happen, but I can’t count on it. Right now, there are no treatments on the market. That means I can’t let down my guard at all, and possibly never will. Again, it’s no wonder I’m grieving.

The important thing now is to let myself grieve. I have lost a lot, and I have years of it all catching up to me at once. This is hard, especially for someone who prefers to avoid unpleasant emotions, but I know it’s important. So these days, I am trying to sit with my feelings, to acknowledge them. It’s not easy, but I know that one day the worst of the grief will pass. I may never again be able to kiss my mother on the cheek, but one day I will come to accept it and it will make me less sad.

Do you grieve your chronic illness’s impact on your life? Please share in the comments. Sometimes it helps just to share what we’re going through.


Trying to be careful without getting in my own way

September 18, 2019

I am super sensitive to gluten. I have known that for a long time, but it amazes me every time I get glutened. One time, the culprit seemed to be some grapes that someone (who had been handling bread) picked up and then put down, and which I then ate without realizing (until it was too late) that they had done that. This last time, I think it was gluten on my own hands that did me in.

Last month I wrote about starting a new medication and the difficulties in getting my doctor to increase my dose. What I didn’t know when I wrote that piece was that I had just been glutened. That might explain some of my increased anxiety, though not all of it. It definitely explains why I wasn’t responding enough to the medication. As soon as the gluten symptoms went away, I felt how much the new med was helping. That took 19 days. Yes, 19 days. Yikes!

For the first week and a half or so, I barely left the house. Then I started to venture out a bit as needed. The final week I was mostly ok, at least enough to resume most activities, despite the extra pain, fatigue, and bloating. After almost three weeks, the symptoms subsided. The thing is, once I realized that I had been glutened, I tried to figure out how it happened, and there was no obvious culprit. I had not eaten a single thing all week that didn’t come out of my own kitchen. I quickly narrowed down the possibilities:

  • Something labeled gluten free actually had gluten in it.
  • I didn’t wash some produce carefully enough.
  • Twice I ate a meal outside of my home. I brought the food with me. Maybe I got crumbs on the container and transferred those to my hands somehow, and then ate something with my hands.
  • I ate a sliced apple and after a slice or two I realized I hadn’t cleaned my hands.
  • I had a hair on my tongue. I did my best to remove it without using my fingers, just in case they were contaminated.

These all suck. They suck because I am already being so careful in each of these areas, yet I got glutened anyway. There’s no doubt that it was gluten, the symptoms were very clear. I will never know for sure how it happened, but I know that all of these are hard to avoid in the future.

Before this latest glutening I was incredibly careful. I promised myself that this wouldn’t change anything. I would continue to be as careful as I had been before, and I wouldn’t try to control things more. It’s not healthy for me to be so hypervigilant. It takes a severe toll, emotionally and physically, and it doesn’t stop me from getting glutened. It can’t. I will get glutened many more times in my life. I try to keep it as minimal as possible, but there’s only so much I can do, and I have to be realistic.

Yet I have found myself being even more careful over the last few weeks. I hate it, and I am trying not to let this control me, but I don’t know how to do things differently. I don’t want to get glutened again if I can help it, and knowing that it’s inevitable to some extent isn’t enough to make me relax when I am out and about.

For example, I played a card game with friends. They were all eating appetizers and cookies, and I was very aware that they were probably transferring gluten onto the cards that I was touching. I made sure not to eat anything without first washing my hands. That’s fine. The problem is how anxious I felt about touching the cards to begin with. It made me anxious to know I was getting gluten on my hands. I feel like my own body is constantly unsafe whenever I leave my home, and that’s no way to live.

I am trying not to worry about the many ways in which my own home is not completely gluten free. I am sure that my phone is contaminated from being out in the world. I don’t clean every item that comes into my home. Grocery packages probably have gluten on them. My purse probably has gluten on it. My winter jacket will probably have gluten on it. My library books probably have gluten on them.

And there is nothing I can do about any of those things.

I must learn to stop being scared of gluten. Yes, it can hurt me. It could even kill me. But I have to continue living my life, and I can not do that if I am always afraid.

I am trying. It is not enough, but it has to be enough for now. Because what other option is there?


Would it be different if I weren’t a woman?

August 21, 2019

I started a new medication. My doctor and I had discussed beforehand that the dose I wanted based on my research was higher than what he suggested. We agreed I would start at his level, then go up only if needed.

For the first two days I felt absolutely horrible. I increased the dose and felt less bad. I increased more and felt better. So I stayed at the higher dose for a bit. It still wasn’t having the effect I had hoped for, but I needed more time, and the higher dose meant my prescription would run out early. I messaged my doctor to get a new prescription.

My doctor said he didn’t remember discussing the higher dose and thought I should be on a lower one. We went back and forth several times in email. I was anxious: challenging doctors can be problematic. I don’t want to be considered a “difficult” patient. I want my doctor to like me so he’ll help me more. Many doctors dislike being questions. Many people dislike being questioned in general, of course, but doctors often have big egos, and are treated like they know it all.

As I talked to my therapist about my anxiety, I discovered two interesting things. First, she helped me connect my anxiety to the way some medical practitioners had treated me in the past. It all made sense when she connected the dots. In fact, it seemed obvious, but I hadn’t seen it.

Second, as I spoke, I said that this wouldn’t be a problem if I were a man. I didn’t even realize I was thinking that; it just popped out of my mouth. And the instant it did, I knew it was true. I had an imagine of the conversation I’d had with my doctor in his office when he prescribed this medication. I thought about how I presented my own research and his reaction to that. He wasn’t entirely dismissive, but he didn’t really consider it, either. And I felt that if I were a man, he would have actually listened to me and considered the merits of what I presented.

Am I right? Who knows. I can’t test this. But here’s what I do know: it is documented that women and men are treated differently by medical professionals. You can read about it here and here, among other places. Sometimes I wonder if this entire journey would be different if I were a man. I’m not saying men have it easy. They are often maligned for “giving in” to symptoms, and they are discouraged from expressing and dealing with the complicated emotions that come from living with chronic illness. Still, I wonder. Would I be taken more seriously? Would I get of the tests I request, less resistance to the treatments I want to try? Would a doctor still have refused to give me a medication in my late 20s because it would cause infertility, even though I told her I was willing to risk it?

Obviously, I have it easier in many ways, too. I am cisgender, petite, white, and well-spoken. That gets me farther in a lot of situations, including medical settings. I am bisexual, but most doctors don’t know that, just as most don’t know that I am Jewish. Still, this question about gender weighs on me.

I am curious, what experiences have you had in medical settings that you think may have been different if you presented as a different gender? I’d love to hear about them.


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