When the solution becomes the problem

March 31, 2020

How do you handle fear? It’s one of the most basic human emotions, and something that we all experience from time to time. Right now, I would guess that more of the world than usual is feeling it on a regular basis.

I don’t know if there’s a “right” way to handle fear, I only know my way: planning, control, and facts. When I’m scared about a new medical test or a current flare or even something not health-related, I deal with it by focusing on the facts, and making plans for what might happen. That allows me to feel in control, which in turn reduces the fear. It’s not perfect, but mostly it works.

Right now, that’s not possible. We have few facts; this is a disease that didn’t exist in humans just a few months ago. The facts that we think we know, keep changing. It also depends on which experts we ask.

Making plans makes things worse. One downside to being a planner is that I’m great at looking 10 steps ahead. I read a lot, so I understand a lot about the world, not just in terms of the pandemic but in general. On top of that, I’m smart. I’m also a logical thinking, very left-brained. Put all of that together, and I have some very clear ideas about where the world might be headed. I have multiple scenarios in mind, based on what actions are/aren’t taken and what so-called facts turn out to be true or false. None of them are good, though some are worse than others. Unfortunately, so far my predictions (made 2 weeks ago) have been accurate.

Not only is making plans very difficult, but there’s another wrinkle: they don’t help. There is absolutely nothing I can do to make the situation in the world any better. There is nothing I can do to make it so that I can sooner see my family or my friends, go out socially, date, have sex. Nothing.

The best I can do is make plans to keep myself alive and healthy. So far I am doing that through day-to-day actions. There are no long-term plans to be made. I just have to keep doing what I’m doing: staying in my apartment, carefully cleaning the groceries that my neighbor brings to me, leaving my mail to sit in the corner of my home for a week (I’m cautious and also not that interested in the mail.) My “plans” involve planning meals, ordering extras of my prescriptions in advance, choosing ebooks to download, and texting friends to stay in touch. Those are not long term things.

Looking at “facts” is not only unhelpful, it’s incredibly stressful. It makes me feel a lot worse. Ditto for making plans. I never tell anyone my predictions because I don’t want to upset anyone, but they aren’t great. I hope I’m wrong, I really do. But in the meantime, having those thoughts in my head only makes things worse. Even as I type this, I am being careful not to think about anything in detail.

So what’s the answer? For me, it’s focusing on the day-to-day. As a planner, that has always been incredible difficult. I thrive on thinking about the future, not only to handle fear, but also to increase excitement about fun things to come, to work out solutions to problems, and more. Avoiding thinking about the future is taking a real effort.

I like reading the news, but right now that’s stressful. Still, I don’t want to avoid the world, and there are other things happening. So I am reading the headlines every day, and trying to only read articles that are not pandemic-related. I am not succeeding 100%, but the reduction has still helped immensely.

When family and friends talk about the pandemic, it’s hard not to get drawn in. I have always been political, so it’s hard not to get sucked into conversations about the way our politicians are handling things. But since I hugely disagree with almost everything they are doing, yet have no ability to change it, this upsets me again. Whenever these topics come up, I try to change the subject. Again, I do not succeed 100% of the time, but any reduction is helpful. I am trying.

Focusing on the day-to-day can be especially hard when so little else is happening. When I talk to someone and ask, “What’s new?” they don’t have much to say. I am trying to focus instead on question like, “What have your kids been doing to stay busy?” “What are you reading right now?” “What shows or movies have you been watching?” It helps a lot to have something else to talk about, and it gives me ideas of shows and movies to watch. For my part, I tell them about the books I’m currently reading, the bird that’s building a nest outside my window, or anything else I can think of on a neutral topic. I ask about their families and tell them about mine.

This is hard. There is nothing about this situation that is easy for anyone. I am alone, and not being around other people is hard. Others are with families that are crowding them and they need time alone. Yet others are in unhealthy home environments are need to leave but can’t. We are scared. Kids aren’t learning. People are losing their jobs or becoming overworked. There’s a lot of stress out there. So yes, it’s damn hard.

That’s why I am focused so much on taking it one day at a time. It doesn’t fix anything in the long term, but it makes this manageable for me in the short term. For now, that needs to be enough.

And one more thing: when I need to, I have a good cry. Because that’s ok, too.


Home alone. Again.

March 11, 2020

Thanks to chronic illness I spend a lot of time at home. Since I live alone, that means that I spend a lot of time alone. Usually I manage this ok, but lately that hasn’t been the case.

In recent months I have been feeling better, which is great! The thing is, as I feel better, I want to do more. But my brain is still way ahead of my body in terms of what I can do. On top of that, what is there to do? My friends are almost all at work on weekdays. At night they are tired and with their families. I used to go out with friends on weekends, but now they are busy with family activities. This is doubly hard for me, because I wanted to have a family of my own. I always assumed that at this point of my life, like my friends, I would be spending more time with a spouse and children. Instead, I am alone.

My days feel empty. I have fewer medical appointments, but that also means I have less to get me out of the house. There is an unending list of things that I can do at home. I have personal projects to work on, closets to clean out, emails to answer, meals to cook. There’s always something. But that doesn’t help the lonliness. Instead, I wander around my small apartment feeling the lack of companionship.

Being single for so long, I have gotten good at going to activities on my own. Still, I don’t always want to do that. It’s more fun to go with a friend. I go to parties alone, I go to concerts alone, I go to book readings alone, I go for walks in the woods alone and you know what? It gets lonely.

On top of that, there aren’t many activities to fill up my days. Most weekday activities are aimed at children, adults with children, or senior citizens. I don’t fit into any of those categories. Most people my age who are around during the day are new moms, and plenty of groups exist for them. For non-parents my age, I haven’t found much. My mother is always busy with one thing or another. I’m jealous. There’s a lot available for retirees. But that’s not for me, either.

This has been bothering me more in the past month than usual, and has come up multiple times in my therapy sessions. That was before the spread of coronavirus and Covid-19. Now I am home even more than I had been before. Events are getting cancelled, even the smaller ones. The few that are still happening just don’t feel like good places for me to be. I was looking forward to a small gathering today, but a couple of people who will be there were travelling this week, and since I am in the high risk category, I’m better off staying home. I want to be around people, but I can’t risk it.

So I am sitting in my apartment typing this. I have not been out of the house today. I may take a walk later, but that is a solitary activity. Tomorrow I will get out of the house, at least. I will go to therapy. It’s not exciting, but at least I will have a face-to-face conversation with someone.

There’s no easy answer to this. It is not the first time that I have felt that way, but I don’t remember how I got out of it before. I suppose I just need to give myself time. Meanwhile, more people are about to learn for the first time in their lives what it’s like to be stuck at home. I just wish we could do it together.


Medications: too little science, too much art

February 24, 2020

What dose should I take? That has never had a clear answer for me.

As a kid in severe pain, the doctors told me to take 3 ibuprofen. They said they wanted me to take 4, but held back because of my size. I was probably around 14 years old then, and under 100 pounds. The thing is, size isn’t the only way to dose a medication. Oops.

As an adult, something slowly became clear: I need small doses of everything. I’m still not a huge person, but I’m certainly well over 100 pounds, and I react strongly to everything.

2020-02-24 11.26.10

A typical starting dose of melatonin is 1-3 mg. I take 75 mcg! I have empty pill capsules which I use to split capsules that, even at their lowest dose, are too strong for me. I open them up and carefully pour the contents into the empty capsules, dividing each pill into 2 or 3 doses. It’s a pain in the butt, but necessary.

Now I’m taking a compounded hycrocortisone (HC). Since it’s a compound, it’s easy to get any dose I need. You know what isn’t easy? Knowing which dose I need!

A book I trust insists that women should start at 25 mg. Patient groups I trust also say to start at 25-30 mg. My doctor says that 15 mg is the right dose. I started at 15 mg and quickly ramped up to 25 mg. I felt much better. After several months, though, I suddenly gained a lot of weight all at once. My doctor felt it was due to the HC and wants me to lower the dose. Given the way I gained the weight (the timing and location) I have to admit that he’s probably right. I had a few other symptoms, too, which could be related. Still, I was hesitant. I felt good, after all. And while for some medications, blood or other tests will give answers as to a medication’s efficacy and impact, HC messes with adrenal tests and makes the results unreliable. Dosing is based only on symptoms. Oy!

If only there was some way to know what the right dose is!

I decided to lower my dose a bit at least. I went down to 22.5 mg. In less than a week I got my period for the first time in months. I don’t think that was a coincidence. There’s been no change in my weight, but I know from experience that steroidal weight gain is a bitch to reverse, so I’m not expecting it to magically disappear on its own.

I’ve had some other good effects, though. I seem to be sleeping better, and I’m waking up feeling more alert and less fatigued. Hmm. That’s appealing.

The question now is: what do I do next? Do I lower the dose a bit more? Hold it at 22.5 mg because it’s working? Change the timing of the pills? I wish I knew!

Unfortunately, there’s no choice but to experiment. This week I will lower my dose again, down to 20 mg, and see what happens. It might be great. I might feel even better. On the other hand, I could feel a whole lot worse. Unfortunately, there’s absolutely no way to know in advance. I just have to try it.


The inconvenience of diarrhea – even at home

February 5, 2020

No one likes to talk seriously about poop. It’s something we all* do, yet it’s treated as an unsafe topic. Commercials for diarrhea medications are laughed at by people. Folks snicker at farts. No one feels comfortable on the phone saying, “Hey, let me call you back in a few minutes. I just need to run to the bathroom.”

For most people, it’s easy to avoid the topic. They don’t think about their poop much. But then there are those of us with digestive issues. I talk about poop with a lot of my doctors. Color, size, consistency, frequency, and odor are questioned and explained. I keep an eye on things. For too many years, I didn’t realize how abnormal my bowel movements were. If I had, maybe I could have been diagnosed a lot sooner. If my doctors had asked my questions about it, I’m guessing I would have been diagnosed sooner.

Well, here on Chronic Rants, we talk about poop. And today’s rant is about the inconvenience of diarrhea. I was having a perfectly fine day yesterday. I was being productive around the house. I wasn’t feeling motivated to work on a project that I’ve been trying to get done, but aside from some reduced motivation, everything was normal. I was on track to go out in the afternoon and evening.

In the afternoon I felt off somehow. I’m still not sure how. Maybe a bit low in energy? I decided to stay in for the afternoon and only go out in the evening. My stomach started to feel a bit off. Again, I’m not sure what exactly felt wrong, but something did. I pushed myself to go for a walk. It was a nice walk, with a clear blue sky overhead – a real treat! I stopped to chat with a neighbor and pet her dog for a while. I wasn’t feeling quite right, but I pushed through; at least I was petting a cute dog!

When I said goodbye to the neighbor I continued on my walk in a big loop that would end up at my apartment building. Then I felt that feeling and I knew: I better get home. Quick. I cut back to take a shorter route home. There wasn’t much I could do. I was walking within my apartment complex, so there were no public bathrooms around. I walked faster. I saw a neighbor that I know up ahead. I slowed a bit so we wouldn’t cross paths. I hated to slow, but making small talk would have been worse. I knew I was walking funny, trying to clench certain parts and walked quickly at the same time. I got into my building and felt that bad feeling. I fumbled to open my door. I tore off my coat and rushed to the bathroom. In my anxiety, I fumbled with my pants. I got them down just in time.

I think a few more seconds could have been my downfall. But I made it. Explosive diarrhea isn’t fun, but having it in public and in my pants would have been so much worse.

I felt a bit better after that. I had gotten the bad stuff out of me, whatever that might have been. But here’s the thing: I felt messy. I cleaned my ass area the best that I could, but it wasn’t good enough. I don’t have a bidet. Chances are, I was clean anyway. But I didn’t feel it. So I jumped in the shower. I had already showered that morning. The diarrhea had left me feeling weak and tired. But what else could I do?

I got undressed, then found myself back on the toilet. Eventually I took that shower. The hot water felt great. After a while, I got out, exhausted, but feeling better.

Obviously I wasn’t going out. I couldn’t be sure the diarrhea was over and, even if it was, I was now too weak to go out. I put on super cozy cloths and settled under a warm blanket. I spent the night watching tv and knitting. At some point I wanted food and decided to keep it simple. I cut up some garlic onions, and carrot. I added homemade chicken broth from my freezer. I threw in shredded chicken that I keep in my freezer. I added gluten-free ramen noodles. Voila! An easy home made chicken noodle soup. It was just the right dinner for that kind of night.

I woke up feeling like shit, no pun intended. That diarrhea could have been so much worse. Still, it stopped me from doing so much yesterday, and today as well. It’s frustrating as hell. And it’s not something I can talk about in a socially acceptable way. I can talk about a recent sprain and my friends shower me with sympathy but bring up diarrhea and suddenly I’m persona non grata.

We all* poop. For some of us it’s more of a struggle than for others, but it’s something we all* do. So maybe it’s something we should all be able to talk about? What’s your experience been with this type of situation? Let’s talk about it!

*Folks with colostomy bags still produce feces, though the verb may not apply.


Gaslighting’s toll

December 17, 2019

If you had asked me a few weeks ago if I had ever been the victim of gaslighting by doctors, I would have said no. Which is sort of funny, because this blog is full of examples, written over the past 8 years. Somehow, I didn’t see it.

Sure, I knew that doctors had told me that it was all in my head. Or that I was making it up in order to get attention. But that’s not the same thing. Except as it turns out, it is.

My therapist used the word last week as we discussed this topic. As soon as she said “gaslighting” it clicked that yes, that’s what had been happening. A few days later, someone used the word again as they talked about medical professionals. And it all fell into place.

I have dealt with gaslighting by doctors for almost 30 years, so no wonder I get nervous about appointments. No wonder I have an inherent distrust of doctors. It makes sense that on dating apps, I avoid doctors and other medical professionals. It all fits.

The problem is, I still need doctors. I need them to order tests and to write prescriptions. Sometimes, I even need them to help me figure things out. The problem is, I don’t trust them. That’s why I was so surprised by a simple suggestion several weeks ago. I was debating whether or not to take a prescription. My symptoms had gone away before I had been able to start it, and I didn’t want to take it unnecessarily. Talking to my therapist about this conundrum, she suggested that I ask the prescribing doctor for his advice. Wow, I hadn’t thought of that! She wasn’t surprised. I learned a long time ago not to trust doctors. I figure things out for myself as much as possible. Still, in this case it made sense to ask, and I’m glad that I did.

I know there are good doctors out there. Some have them have been incredibly helpful. Not all of them subjected me to gaslighting. But just like I clearly remember the time I backed into a telephone poll while parking last month but have completely forgotten the dozen other times I parked in that same spot without hitting the poll, it’s the doctors who treated me badly who stand out most in my mind. They are the ones that scare me, that put me on edge, even when I know I still never see them again.

Sadly, I am not alone. There are many of us who have been subjected to this horrible treatment. It is no wonder so many of us distrust doctors and the overall medical system. I am now working on this with my therapist. I will never undo the damage that was done to me physically by ignoring my symptoms, but maybe one day I will have just a bit more trust in medical professionals? Maybe. Until then, if you have been, or are currently being, gaslit by your doctor, know that you’re not alone. And if you can, find someone better.


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.


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