The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

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Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.


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!


What’s the deal with haircuts?

May 28, 2020

I ask this in all seriousness: why are people risking their lives for haircuts?

If you live in another country, you might not know what I’m talking about. Here in the U.S., businesses are opening up again. In many states, hair salons have opened, and people are flocking to them. In my state of Massachusetts, that is happening this week. Even though hair salons pose a higher risk than many other businesses, they are among the first to open because of public demand. Reopening is happening based on politics, not science.

I can’t understand why people are running for haircuts. They celebrate on social media, “Yay, I booked an appointment!” I don’t get it.

To be fair, I have never been as fashion-conscious as most. Still, I would love to get my haircut. I just don’t think it’s worth risking my life or the lives of those with whom I come into contact. Why are people acting like it’s so urgent? Why not wait?

Obviously, I would love to go out. If it were safe to do so, here’s what I would love to do, in order of preference:

  1. Hug my parents.
  2. See my physical therapist.
  3. See my occupational therapist.
  4. Get some needed blood work.
  5. Visit with close friends.
  6. Take a walk without worrying about being too close to people.
  7. Pet every dog I see.
  8. Buy my own groceries (especially so that I can manage my food restrictions better.)
  9. Visit with my parents. Yup, they definitely deserve to be on this list twice.
  10. Travel. Preferably to someplace on the ocean. (Even if it were only an hour away.)

Getting a haircut isn’t in my top 10. I doubt it’s even in my top 20. Yes, I’d love to get my hair cut, and if it were safe, I would probably plan to do it in the coming weeks, but it’s far from a top priority. So I just don’t understand the obsession. I’m sure that some people feel that it’s safe (at lease for them.) But what about everyone else? Can you explain it to me, because I would really love to understand.

Meanwhile, have you thought about your top 10 priorities for when those things become safe? Or even your top 5 or top 3? Please share as many as you feel comfortable sharing!


Finding my new (figurative) voice

May 21, 2020

I haven’t written here for a while, and I have been trying to figure out why I feel less motivated. Is it the pandemic? Is it that I have run out of things to rant about after nearly 9 years (wow!) of this blog? I have finally had to admit to myself that it’s neither; it’s my book.

Many years ago, I decided to write a book about living with chronic illness. I plodded along slowly for several years, finally picking up the pace about a year ago. More recently, I have been spending a lot of time working on it. But lack of time isn’t why I haven’t been writing here.

In addition to the time I have spent on the book itself, I have also spent a lot of time talking and writing about the book. I am in writing groups with other authors, I talk to family and friends about it, I talk to interested strangers about it, I post about it on social media, I write about it to the followers on my email list. But the effort of talking and writing about the book isn’t what is stopping me from writing here, either.

Finally I figured it out: it’s my voice. You see, I chose to write the book under my real name. I am sharing a lot more there than I am used to sharing publicly. At the same time, I am sharing less than what I have shared on this site. I am finding a new balance, and in the process, I am holding back on some things. The question I ask myself isn’t, “Should I talk about this in an email or on the blog?” Instead, it’s, “Should I talk about this under my real name or use my pseudonym?” For years I leaned towards the latter but more recently I have been leaning towards the former. And as I share more with my other audience under my real name, I struggle with not sharing those same stories here. After all, how can I maintain my anonymity here if I share the same story under my real name?

Don’t worry, though, I am not abandoning this blog! Instead, I am simply finding a new balance. As with many things in life, this is not a one-time task but an ongoing process. At the beginning of the book, I had to find that balance and I did. Now am finding it again, and the pandemic only complicates things. When I eventually publish the book, I am sure I will need to find that balance again. This is just how things go. But I am sure that I will be find my ranting mojo before too long.

Meanwhile, I would love to know, have any of you ever written books about chronic illness? If so, did you write under your real name or a pseudonym? Did you enjoy it? Was it well-received? Please tell me all about it in the comments! Feel free to share the link to your book so that others can find it, too.

As for the link to my book, well, first of all the book isn’t done yet, so there’s no link. But also, there’s that whole anonymity thing again. If I share the link to a book that’s under my own name, then I won’t be so anonymous anymore, will I? And while I may one day be comfortable sharing all of the stories about myself that are on this blog (I’m mostly comfortable with that now, in fact), there are some stories here about family, friends, dates, and others that are not mine to share. I always checked with them before writing those stories, but they agreed to be mentioned on a blog that was anonymous, and it wouldn’t be right to change that now. So this blog will remain anonymous. Still, my hope is that when my book is one day published, you will find it anyhow. And that it will bring you joy and comfort.


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