Waves of relief

March 3, 2021

Waiting for the biopsy results was the longest two weeks I’d ever experienced. Why did the pathology lab have to be backed up now, of all times? I was terrified. If it was breast cancer, I wasn’t sure if I could handle it. This might just be the thing that broke me. The thing that was one thing too many. Who even knew that breast cancer could present as a skin irritation? I thought I was seeing the dermatologist for something weird, but benign, and now I was suddenly waiting for biopsy results. Would would I do if it was cancer?

That was more than a dozen years ago. The results came back negative, and I was relieved, and went on with my life. Until two weeks ago. Two weeks ago, I happened to see something weird in my peripheral vision as I passed the bathroom mirror. I looked closer. I had something weird on the side of my breast. It looked like maybe a pimple that had gotten irritated and popped, then scabbed over. Weird. I know pimples on breasts are possible, but I don’t usually get them there. I moved on.

The next day I took another look. The scab looked green-ish and the red area around it had grown larger and darker. Uh oh. I thought of that other time, more than a dozen years ago. It was after hours, but the next morning I called my nurse practitioner’s office and set up a telehealth appointment. My NP is a women’s health specialist, and really knows what she’s doing. I waited anxiously for the next day’s appointment. Then it occurred to me to send in photos. As soon as she saw the photos, the NP told me to come in, and mentioned that we might need to schedule a mammogram. Now it was Saturday, and they were about to finish seeing patients for the day. They didn’t see patients on Sundays and the scheduler wouldn’t be in until Monday. I waited. And waited.

Finally it was Monday, and I reached out first thing to get an appointment. The soonest was Wednesday, but I asked the scheduler to call me if there were any cancellations. I was a nervous wreck. For the first two days I had told myself that I was overreacting by even considering the possibility that this was anything other than benign, but when my NP mentioned a potential mammogram, I knew it wasn’t all in my head. Like I had all those years ago, I wondered if I could handle cancer. I wondered if it would be the thing that broke me. But this time, I was pretty sure it wouldn’t be. I would deal with it, somehow.

I was fairly sure that even if this wasn’t cancerous, it was probably infected. The center scab had come off, then scabbed again, then come off again, even though I was careful not to touch it. Each time the scab came off, it oozed. The center was yellow/green and the surrounding area was red. This was not good, whatever it was. But I had to wait.

The timing was odd. I had my first period in at least a year. I was taking antibiotics for SIBO, a gut issue. Those antibiotics target the gut, though, and wouldn’t help this. I hadn’t been indoors anyplace in 5 months. But if ever there was a time to go indoors despite the pandemic, this was it. This all ran through my head for days. Then on Tuesday, as I sat at my kitchen table sewing masks, the phone rang. There was a cancellation at 1pm. I looked at the clock: 12:21pm. I live 35 minutes away. I took it without hesitation. I shut off the sewing machine, threw my things in a bag, and ran out the door. I ate my lunch in the car with my hands, thankful that I had leftovers available. A cold hamburger patty, cold roasted potatoes, and cold salad never tasted so good.

Even while highly on edge about the thing on my breast, I noticed and was grateful for the office’s excellent Covid protocols. The assistant took my vitals. Then I sat in the room while my NP called me on my cell phone (which I’d been instructed to bring for this purpose) and asked me to explain the situation. This minimized our time together in the room. She came in and washed her hands carefully while clearly trying to distract me with neutral conversation. Then she came over to examine me. It was my first physical contact with a human in months, but I didn’t even notice that part. The only thing I processed was her response: she was relieved. It wasn’t cancer.

I left that office with a prescription for antibiotic ointment and with the confidence that that open sore was not indicative of breast cancer. Then I celebrated. The day before I’d baked cookies, which I ate as comfort food because I was stressed out. Now I ate them to celebrate. I blew off all responsibilities and spent the afternoon playing computer games, taking walks, and relaxing. I happened to see a neighbor’s adorable puppy on one walk, and had a lot of fun playing with him. What a joy!

The next day, I woke up and remembered it all immediately. Again, I felt relieved. Again, I had a relaxing day with few responsibilities. It was just what I needed after such a harrowing week.

Of course, responsibilities can’t be held at bay forever, and I am back to doing the things that must be done. Still, I am hugely relieved. As I put the antibiotic ointment on my breast three times a day and notice that the scab has not reopened and the redness has continued to shrink and fade, I feel the relief all over again. This could have been so much worse. So many times, my body has defied the odds and given me some new terrible condition, but not this time. So this time, I’m celebrating.


Burned out and needing to reprioritize

November 16, 2020

I noticed it after the election, though in hindsight it started long before. I tried to ignore it, but I should have known that was a mistake. Still, it gave me the wake-up call I’ve been needing.

For a while I was feeling better than I had in ages. The crisp fall air was delightful, and with the cooler air I had less inflammation. I enjoyed better sleep with the fresh autumn air coming through my open bedroom windows. I was taking 2 walks every day, and one of them was longer than my previous once-a-day walks had been. I was doing pretty well, and thought it would continue at least through the fall and winter.

Then on that beautiful Saturday, we got the election results. It was like I had been holding my breath for months, and I could finally exhale. What a relief! I was having a socially distanced visit with a friend, our first time seeing each other since this had all begun. We had met up in a suburb between where we each live, and had taken a walk. We got the news after the walk, as we stood across the street from each other, chatting. First there was stunned disbelief, then jumping up and down (her), texting everyone I could think of (me) and dancing in the street, literally (both of us.) I was excited all day long.

But here’s the thing about adrenal fatigue: any type of stress on the body can’t be handled. Bad stress causes problems, but good stress also causes problems. I explain it like this: winning the lottery would probably have the same physical impact as the death of a loved one.

So, after many months of the pandemic, a lot of isolation (I live alone and have no one I can be in a bubble with, so I haven’t had any non-medical human contact, even a hug, in 8 months), fear over the election, and then election-related celebration, my body couldn’t take any more. The good thing is that I didn’t have the kind of fatigue “crash” that I have had in the past. Maybe the medication is helping or maybe it was something else, but I’m grateful for that. Still, I felt it, but I pushed myself anyway to keep doing things. I did stuff around my home. I brought my car in for work. Each day, I felt it coming on more and more. Then on Wednesday I had a sore throat and a slight cough. Uh oh.

I’ll interrupt myself here to say that I know fatigue, sore throat, and cough are Covid-19 symptoms, but I was 99.9% sure it wasn’t Covid-19. These are the exact symptoms I get whenever I have adrenal fatigue issues. The cough wasn’t regular – it was one cough every hour or two, a small one, and it had nothing to do with chest congestion. The sore throat has more to do, I think, with my thyroid getting inflamed. So while Covid crossed my mind, it was hours after I’d already assumed this was my usual adrenal stuff. These are the warning signs, the “I better rest NOW or else I’ll get really sick” signs. That’s what I was paying attention to.

So by Thursday I knew I had to rest, and I did. I felt sort of gross and forced myself to shower, which took far more energy than I’d have liked. Aside from that, I rested all day. I ate leftovers. I watched lots of YouTube knitting videos. I crocheted and knit, read a book, watched tv, barely left the couch. It was just what I needed.

On Friday I was still a bit tired, so I spent another day watching YouTube videos, this time about decluttering (something I have been working on.) I felt inspired, so I put away a few things, and made notes about other things I would do when I had more energy. That little bit of activity felt good, so I figured I would be ok the next day. Usually I only need to rest for a couple of days if I listen to the warning signs. (If I ignore the warning signs, I end up sick for about a week and a half, so it’s worth paying attention.)

But then Saturday rolled around. I was still a bit fatigued. No problem, I could put off the world for another day. I watched fewer videos, but still rested. I thought about taking a walk. After several days of rain the sun was out, but the idea of expending that much energy was too much, so I stayed in. Watching videos and reading a book felt like such a luxurious treat! I cleaned up around my apartment a bit, finally clearing the crap off my coffee table for the first time in ages and putting away the clutter that had accumulated in a corner of my living room. This felt good.

Then it was Sunday, and I knew I was ok and should go back to “normal.” The thing is, I didn’t want to do normal. Normal for me felt like a job. And for the first time, I realized that normal had become a job! I was spending so much time on volunteer work and some small bits of paid work, and feeling the rest of the time like I needed to check off items on my personal to-do list, that I wasn’t taking time to relax. Watching a knitting video felt like a luxury I had to squeeze in, and spending time on that instead of on something that was supposedly “productive” was stressful. WTF? I’m disabled. I’m unable to work. So what am I doing? I’m pushing myself to work as much as possible anyway. Hmm. Not good.

Granted, I’m not “working” that many hours. I don’t have many “good” hours in a day, and I have to spend a lot of time cooking, cleaning, exercising, doing physical therapy, etc. Still, I am trying to do too much with my remaining hours. That’s why I have multiple posts I have been wanting to write for this blog for weeks, but haven’t been able to find the time to write any of them. I am writing this now only because I haven’t quite returned to my “normal” routine yet. Even so, my list for today has way too many items on it: a video call with my mom, a video call with someone who wants to pay me for some work that I don’t have time for but don’t want to turn down, taking care of some financial stuff, working on a book that I want to write, doing laundry, decluttering around the house a bit, watering the plants, writing this post, taking a walk, doing my physical therapy… that’s already way more than I have the time or energy for. Plus, I should really shower and leave time and energy for meals. I am trying to do too much, and it’s leaving me burned out.

Taking four days away from the world has done me so much good. It gave me the physical rest that I have so badly needed. It gave me emotional rest. But it also gave me insight. What I am doing is not working, and something has to change. I have always had a lot of drive. When I was in graduate school, working towards a PhD, at one point I worked as a teaching assistant and also the manager of my apartment building, while also volunteering as vice chair for the university’s Americans with Disabilities compliance board. Sure, I was young and still had energy, but YIKES! That was a lot! I’m not good at doing things part way.

On top of that, there’s the problem that while my body doesn’t function the way I want it to, my brain does, and my brain wants to do lots of things. I have a lot of interests, and I keep adding more and more, but not taking things away. During the pandemic I have added one new hobby, one new volunteer job, and one new paid job (the paid job is short-term and very little time, but still takes mental energy.) The thing is, I didn’t remove any of my old activities. Sure, I am no longer driving to doctors or doing any in-person socializing. I am not dating or going to family dinners. But while those things took up time, they also gave my life balance. Now I am lacking that balance. I am all work and little play, and that’s not sustainable.

I knew this before. I’ve been aware of it for at least a month or two, but I wasn’t sure what to do about it. I didn’t want to give anything up, so I kept going. I was managing ok, after all, so that meant I could continue, right? Obviously not. Because typically after this kind of fatigue, I take a few days to rest and then jump right back into things. I never feel this kind of mental and emotional resistance. Things couldn’t be more clear: it’s time to reprioritize. I am not sure what that will look like, but I know it needs to happen.

This is not the first time this has happened, and I’m sure it won’t be the last. I know this is something that many of us struggle with. So as I take some time to figure out how to better balance my life, I hope that you will do the same. It’s so much better to reprioritize before we get burned out, after all. But since it’s too late for that this time, I’m going to listen to my body and do it now.


What isolation is teaching me about my health

August 20, 2020

While a lot of folks are venturing out into the world again, I am mostly staying in my apartment. During the hot days of summer I generally stay indoors anyway, since the humidity and heat trigger my symptoms. This year, with no other indoor places as an alternative, I am at home. And I am surprised at the impact it is having (and not having) on my health.

It became clear over the years that too much activity would lead to more fatigue, more pain, more gastrointestinal symptoms, and more random symptoms, but I could never be sure what constituted “too much” activity. I knew that resting helped, but how much rest was needed? More than that, I never knew if an increase in symptoms was from “too much” activity or from something else.

Then there was the food angle. If I had diarrhea, for example, was it from something I ate, “too much” activity, the weather, or something else? Even if I ate my own food, when I was out of the house I would wonder if I could have gotten gluten cross-contamination somehow. What if I ate food made by someone else? Would that be safe?

With so many variables eliminated, it is fascinating to see what remains. Aside from a couple of carefully chosen convenience foods (mmm, gluten-free frozen pizza!) I have eaten an item made by someone else only once in the past 5+ months: a birthday cake. My mother made it, and I trust her to make sure it is gluten-free, corn-free, and free of any cross-contamination. I have not eaten at a restaurant or even gotten takeout. My avoidance of takeout is partly from Covid concerns, partly from convenience (there aren’t many places near me with food I can eat anyway), and largely because I am enjoying the safety of eating my own food. Yes, I’m tired of constantly cooking and constantly washing dishes, but I love the confidence that my food is safe.

Of course, it’s not all easy peasy. Twice I was about to eat frozen vegetables when I realized they weren’t my usual brand (the downside of having someone else do my grocery shopping.) I checked the bag and each time, there was a risk of cross-contamination. Yikes! I am so thankful that I caught them both in time.

For the most part I have felt pretty good. That tells me a lot about the impact of activity level on my health. I was especially aware of this through mid-June. I had almost no pain aside from the predictable pain that came from not attending physical therapy. Then the weather shifted. I am so incredibly thankful to live in an apartment with central air conditioning. None of my previous apartments had it, and when I moved several years ago, I made it a priority. I am especially grateful for that now that I am in isolation. In previous summers, when my window units weren’t sufficient, I would sit at the library, exercise by walking around a craft store, or spend several days at my parents’ house, enjoying their company and their air conditioning. With none of those as acceptable options now, I am stuck at home. Still, even with the door closed and the air conditioning on, the weather seems to be impacting me. And when I do venture out to check the mail or take a short walk, I feel it even more.

I am glad that, as I wrote last month, I am less heat intolerant now than I used to be. Still, “less than before” still doesn’t mean I can handle it well. For two weeks I barely left my apartment. It wasn’t good for me physically or emotionally, but the alternative seemed worse. Even while staying indoors I had increased fatigue (perhaps from the lack of outdoor movement? but probably not), increased joint pain (ditto? but probably not), increased inflammation, and increased gastrointestinal symptoms. The inflammation is bad. My knees are so swollen that my knee braces barely fit. My physical therapist (the one person I get within 10 feet of) put her hands on my neck and shoulders and instantly said that she felt the inflammation. This is not good.

Two weeks ago I received test results: I am hypothyroid. Again. I have had to adjust my medication many times over the years, sometimes in the summer and sometimes in the winter. However, this time I can rule out a lot of factors that could be impacting my thyroid. After all, not a lot else is going on!

Yesterday I felt lousy. I had diarrhea followed by fatigue. It was easy to cancel my “plans” for the rest of the day, which consisted of writing a blog post here, taking a walk, doing my physical therapy, and doing some organizing around the apartment. Instead, I watched tv and crocheted. It was relaxing and it helped. Normally I might have thought I had done “too much” that day, or wondered about something that I ate outside of my home. Instead, I could narrow the culprit down to two things: the weather and what I ate. I had eaten ice cream after lunch, which is usually fine, but I’ve had a lot of dairy lately and maybe it was just too much. And right before lunch I had felt hot on my way home from my walk. The humidity was bothering me, which is never a good sign. And then I ate immediately after I got home because I had a therapy appointment online that I needed to be ready for. Oops. I’m pretty sure those two things combined were the problem. It was good to at least have a reasonable guess as to the cause of the problem, and then to be able to easily rest afterwards.

The other day I met up with a friend. We took a walk, sat and chatted, walked some more, and went home. We kept our distance and wore masks. We were safe. But part way through the visit I felt ill, and I know 100% it was from the heat. On a cooler day I had met up with my parents. We didn’t walk as much and just sat. I felt fine afterwards, just tired. I’m not used to even small amounts of socializing any more. The difference was definitely the weather.

So what’s my point? My point is that I am getting a better understanding of how the many different variables of a “typical” day impact my life. I can figure out what makes me feel ill, and what doesn’t have an impact or even makes me feel better. The goal for me will be to use this information when, one day, I am able to go out and do things again. I will need to find a balance. Avoiding symptoms 100% is obviously not possible; if I can’t do it now, then I’ll probably never be able to do it. I also don’t want to cut off the rest of my life in order to sit at home and hide from my symptoms. Still, my hope is that I will get a better sense of where the balance lays, so that I will be able to focus more on the things that are worth the increased pain and other symptoms, and avoid the ones that aren’t.

I have also learned how big of a difference telehealth makes for me, and will advocate for its continuation. Several of my doctors have already said that they plan to continue with it, so I will need my insurance to cover it. Not having to drive for an hour to sit in a waiting room before finally seeing my doctor for a 15 minute conversation that involves no physical examination is waste of everyone’s resources, and I will be glad to see that end. I want to reserve my appointment-related energy for the appointments where attending in person actually matters.

With isolation far from over, I know that I will learn many more lessons. These are an excellent start, though, and I am glad that there will be at least one positive thing to come out of all of this for me.

What about you? How has your health been during isolation? Are you learning anything new or clarifying previous assumptions? Please share!


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.


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