Sometimes the bare minimum is plenty

November 13, 2021

I’ve been wanting to write for weeks but it’s just been too much. I’ve been having a really hard time lately.

Thanks to medication changes, my adrenals aren’t being properly supported, so I have both less energy and lower tolerance for handling stress. And in a few days I have a colonoscopy and endoscopy.

Colonoscopies aren’t a big deal for most people. Not that anyone loves getting them, but you just deal, right? Well, thanks to a decades-long history of medical trauma, medical procedures can be triggering for me. And thanks to decades of undiagnosed gastrointestinal symptoms, GI stuff is also triggering for me. So knowing that in two days I’m going to have to drink a formula that will probably make me throw up, and that will induce the kinds of GI symptoms that I’ve struggled with for most of my life, followed by a medical procedure, where I’ll be up close with people during a pandemic…. yeah, my anxiety is at an all-time high.

Logically, I know it will be all be fine. But logic isn’t helping. My therapist gave me some breathing and thought exercises which help, and I’m just trying to make it through this period. It’s rough.

To make it a little easier, I’m doing a few things that I don’t usually do:

  • I cried. I spent a lot of my life learning not to cry because if I did, people thoughtI was just trying to get attention. (Yup, as a 12-year-old with chronic pain, that’s what I was told by several doctors and teachers. Thankfully, my parents never thought that.) Now, I don’t cry easily. For a week I really felt the need to cry, but I couldn’t let it out. Finally, though, I cried. And then I sobbed. And then I sobbed some more. I cried a lot that day, and it helped a lot. I cried a bit yesterday. I’m still having trouble crying as much as I need to, but I’m working on it. It helps to let it all out.
  • I asked for help. I don’t do this often enough. I posted on my Facebook page, asking friends to make phone calls to manufacturers for me. I was trying to find a gluten-free version of the easier colonoscopy prep. I had made a few calls, but it’s so stressful. For one thing, making any of calls for gluten-free stuff is stressful and exhausting and I’m tired of doing it. But then, doing it for this purpose…. it was just too much. A fabulous friend did the research. She called everyplace on my list, then did more research to find more to add to the list. She struck out, but if she hadn’t called for me, then I would have felt like I had to, and I would have been upset with myself for “failing”, thinking that maybe if I’d made the calls it could have been easier.
  • I asked for help again. Several friends had volunteered to help with the calls, so when that friend struck out, I asked for more calls. Since I couldn’t get the easier prep, I wanted to get an anti-nausea pill to help with the one I’ll be doing. Again, I needed something gluten-free. Three people called pharmacies all over my area to ask which manufacturers they used for this med (there are quite a few who make it), and then called those manufacturers to ask if the med was gluten-free. Again, they struck out. But again, if they hadn’t done it then I would have felt like I had to. It was so great of them to make those calls.
  • I asked to borrow a puppy. No, really! I have neighbors with two of the sweetest, most adorable puppies. Both are house-trained and don’t chew on stuff, so they’re not too hard to watch. I asked if I could borrow one, and the timing worked out that I took one for an hour. He cheered me up SO MUCH! Dogs are great medicine. Normally I would have felt silly asking, but I’m glad I did. And they were glad their dogs could help.
  • I’m giving myself a break. My to-do list is short right now. Really short. And even then I know it’s ok if I don’t get most of it done. In a typical week this amount would be easy to do (my list is usually twice as long), but not now. For example, today’s list is: laundry (already in the machine – win!), vacuum (if it doesn’t happen, that’s ok), prepare some work for my volunteer gig (they know I’m struggling and that I may have to cancel tomorrow’s meeting if I can’t get it done, but I think it will be doable), walk (fresh air is good for me), and watch YouTube videos while relaxing with my knitting. My hope is to get everything done before lunch except the last two. That way, I won’t have anything I need to do this afternoon except enjoy a walk and relax on the couch. And honestly, the vacuuming is unlikely. And that’s ok. The rest of my week is even easier than today.
  • I’m avoiding anything emotionally taxing. When a friend brings up a stressful topic that isn’t necessary to discuss, I ask to change the subject. Stressful movies and books are on hold. I’m keeping it as light and easy as possible. Last night I watched an animated Disney movie and that was perfect.

Is this all enough to make me feel great? No, of course not. But it’s enough to make me not feel worse, and that’s a win. I’ll keep spending time with dogs, watching easy movies, doing my crafts. I’ll keep my to-do list short. I’ll ask for help. I’ll spend time with dogs. (Oh, did I say that twice?)

In a few days, after the colonoscopy, I’ll feel better. Once my medication is back to working properly, I’ll feel even better. (I tried to time things so that it would be back before the colonoscopy, but my doctors were really slow to get back to me about how to proceed after we got the test results.) This isn’t the post I planned to write. That one has to wait. And again, that’s ok. But it’s one that felt right to write. We all have times where we’re struggling more than usual, and it’s ok to do the bare minimum for a while. That’s definitely my plan for now.


Choosing an arm: a simple decision?

October 16, 2021

“Which arm do you want for your flu shot?” It’s such an easy question, right? Well, not really.

In the car on the way to the pharmacy, I debated. I usually have a sore arm for a bit. (For context, I have chronic pain in many areas of my body, and my right wrist is one of the worst spots.) My left arm is stronger and has less pain, which means I can tolerate it there more, so I should get it in my left arm. Then again, maybe I should get the shot in my weaker arm, so I still have one strong-ish arm. So I should get it in my right arm. The soreness can mess up my sleep for a night or two. I sleep on my left, so I should get the shot in my right arm. But do I really want more pain in my right arm? No I don’t, so I should get it in my left arm. I reach for things with my left (I’m right-handed, but with extra pain that wrist, I have to do more with my left) so I should get it in my right arm. I use my left more when I drive, so I should get it in my right arm. But I want to have at least some function in my right when I drive, so I should get it in my left arm.

I went back and forth for a bit. Finally, I decided: the left. The deciding factor was simple: I can push through the arm soreness in my left to crochet and knit, two of my favorite hobbies which I do to relax. I can not necessarily push through the soreness to do those things if it’s in my right arm. And if I’m feeling lousy, which I have been lately (that’s a story for a different day) then I’ll want to do my yarn crafts more than ever.

These are the kinds of issues that I don’t think “healthy” people deal with. They simply pick an arm, probably their non-dominant one, and move on with their day. But for someone like me, whose non-dominant arm is needed to compensate for the pain and weakness in what is my naturally dominant arm, there’s no easy answer.

If you’re struggling with similar issues, related to your flu shot or anything else, please know that you’re not alone. Sometimes these supposedly-easy decisions are actually very difficult.

P.S. I’m happy to say that the soreness was much milder this year, and only disrupted my sleep for one night.

P.P.S. My brain fog is much worse than usual this week. I hope this post makes sense and that I caught the worst of the typos but, well, it is what it is.


Losing the best doctor

September 1, 2021

I just had a long talk with my fabulous primary care physician. The talk about my health issues went fine, but when we talked about his upcoming retirement, I cried. I’m pretty certain I have never before cried when I lost a doctor. I have felt upset. I’ve been nervous. I have simply not cared. But this is different.

Not only is Dr. P my PCP, but he prescribes my thyroid and adrenal medications. Both are medications that are rarely prescribed. (Hypothyroidism is commonly treated, but not with this particular medication.) Yes, other doctors do this, but they are few and far between. Plus, many doctors treat one condition or the other, but I need someone who does both, because of the way the two impact each other. And Too many doctors provide these treatments without fully knowing what they’re talking about. But Dr. P knows.

It’s more than that, though. Yes, he’s smart and he’s up-to-date on the research. But he also knows when to pay attention to patient outcomes more than to research. He is smart, caring, and, unlike so many other doctors I have seen, not condescending or patronizing. He does not put his ego first. Today he explained a course of action he wants to take to address some symptoms I have had recently, and he explained WHY. He took time to answer my questions. When I asked why we would do X test and not Y test, he thought about it, admitted that Y could make sense, thought some more, and then said that he’d still prefer X and told me why. I agreed completely, because his reason makes sense.

In order to do the test I need to go off of my adrenal medication, which makes me very nervous. He preempted many of my concerns by saying that he doesn’t want me to feel ill, and that if I have minor symptoms like a, b, and c then I should stick it out until after the test, but if I have worse symptoms like d, e, and f, then he doesn’t want me to feel that bad and I should go back up on the medication and there are other things we can do. He outlined the courses of action we might take if the test is negative (uh oh) and other options if it’s positive (which is what we’re hoping for.) So many doctors would have just ordered the test and sent me out the door, but Dr. P really took the time and effort to address my concerns and make sure I was comfortable.

I have had a lot of medical trauma, and so much of it was avoidable. That time I dropped a knife on my foot was an accident, but so much of it has been doctor-induced (an in fact, the way the doctor treated me in the emergency room and again when he took out my stitches was horrible and trauma-inducing, also.) I find it incredibly hard to trust doctors. For most of my life, I have seen doctors on a regular basis, and so much of that time they were unhelpful at best and harmful at worst. I have been poked and prodded unnecessarily. I have been, essentially, assaulted. (It said in my chart that my wrist could easily be dislocated and then put back in place, and more than one doctor “tested” this, even after I asked them not to, and even though it was incredibly painful.) I have been patronized and condescended to. I have been gaslit more times than I can say.

At first I regarded Dr. P with the same skepticism that I had for all doctors, but over the years, I came to trust him. I haven’t always agreed with him, but the way he listens to my concerns, and even debates me, alleviates a lot of my fears. I ask him to run a test. He says it isn’t necessary. I point to some research. He points to some different research. After a conversation like that I may not get what I want, but I feel heard. This should be something we have in every medical appointment, but it’s all too rare.

I got lucky with Dr. P, but also I didn’t. Lucky wasn’t involved. I worked hard to find him. I had many bad doctors before I found him. I researched. I asked in patient groups. I asked other doctors. Finding Dr. P was no accident or coincidence. Still, I have been grateful to have him as my doctor for several years now.

And he is retiring in a few months. I am absolutely devastated.

If you know any doctors in eastern Massachusetts who treat hypothyroidism with both T4 and T3 medications and who have actual knowledge of adrenal fatigue, please please please give me their name! Of course I’ll do my own research into them, but it would be wonderful to have more people to look at.


Vaccine ableism

March 19, 2021

For weeks, whenever someone asked me when I would be eligible for the Covid-19 vaccine, I told them I would be eligible at the start of Phase 2. They nodded. It made sense. It made sense to me, too. After all, I have a bunch of risk factors. Phase 1 was for medical personnel, and Phase 2 would be for folks with risk factors due to age and/or health conditions, as well as essential workers who weren’t covered in Phase 1 (grocery store worker, utility workers, delivery workers, etc.). Phase 3 was for everyone else. The first part of Phase 2 was for folks who were 65+ or had 2 or more co-morbidities, which I knew I had. But somehow, oddly, I was wrong.

I started to suspect something when I saw the list of conditions that Massachusetts was counting as co-morbidities. At the time, the state’s website simply offered a link to the CDC’s website. The CDC (the Centers for Disease Control and Prevention) offered two lists. The first list was for more serious conditions. I didn’t have anything on that list. The second list was where I fell. I have 5 different conditions/medications that fit into that list. But for some reason, Massachusetts wasn’t using the second list, only the first one.

Then Massachusetts did something mysterious: they added smoking and obesity to the list of eligible conditions. So now people I knew were qualifying because they smoked and were obese but were otherwise totally health. Meanwhile, I wasn’t eligible yet despite having multiple autoimmune conditions and taking an immunosuppressant medication, in addition to other things that were also suspected to be co-morbidities, like central complex sleep apnea. In fact, I wasn’t going to be eligible early at all. Nope, I was getting lumped in with the general population in Phase 3. WTF???

Over and over friends would ask, when are you eligible? Over and over I responded, “I’m not eligible until the general population.” I lost track of the number of times someone said, “I can’t believe I’m eligible before you!” or asked “Why the hell aren’t you eligible before me?” (Spoiler alert: the answer is ableism.) I watched friends with similar health conditions getting vaccinated in other states. I watched friends get vaccinated because they were technically eligible, even though it wasn’t intended for them. For example, one was eligible because she works for a hospital, even though she works in administration, having no contact with patients, and has been working at home all year.

Meanwhile, at my last medical appointment my doctor said, “You need to get the vaccine as soon as possible.” That was immediately followed with, “You aren’t eligible until Phase 3.” I tried to convince myself that waiting wouldn’t matter. After all, I’m staying at home, right? But what happens when I can’t stay home? What really changed my mind was the breast cancer scare I had several weeks ago. I absolutely had to be seen in person. What happens the next time I have to see a doctor in person? Because sooner or later, it will happen again. The vaccine won’t protect me 100%, but it’s a good start.

And to me, that’s the point. Yes, everyone wants the vaccine. But while some folks want to get it so they can eat at a restaurant or hang out with friends (both very important, and I’m definitely not negating the importance of either one), those are optional. There are ways to see people outdoors and at a distance with masks on. Meanwhile, some folks must get medical care, in person, up close, and indoors. Yes, medical offices take precautions. Still, these are not optional visits, and we should be as protected as possible.

Are there folks who need a lot more medical care than me? Yes. Are there folks who are at much higher risk of Covid complications? You bet. I’m not suggesting that people like me should have been first in line. Not for a second. I am saying unequivocally, without the slightest hesitation, that we should not be last in line. It is inexcusable.

This is nothing short of ableism. I have had many doctors tell me that I am at higher risk. My rheumatologist keeps reminding me to stay isolated. I have been following the science. I see folks who have higher risk factors than me who are likewise not eligible until the general population. And yet, Massachusetts did not take us into account. Who determined the order of the vaccine eligibility? Were there doctors and scientists involved? How on Earth did this happen? Why allow folks on that first CDC list but not the second? Why allow people who are obese and have type 2 diabetes to get vaccinated at the start of Phase 2 but not allow someone with type 1 diabetes and severe asthma until the end of Phase 2, and not allow someone who is 54 years old with type 1 diabetes and liver disease until the general population? This makes no sense.

This reminds me of one year ago, in the spring of 2020, when we were first learning about the risk factors of having severe complications from this horrible virus. Over and over people said that most folks shouldn’t worry too much because it mostly just effected the sick and elderly. They were saying, “I’m not worried because I’ll probably be fine, it’ll just kill others.” They were saying that they didn’t care about our lives. That our lives didn’t matter as much. That our lives had less value. Well, fuck that. Our lives have plenty of value and suggesting that it’s okay for those who are sick and/or elderly to become incredibly ill and possibly die is horrifying and inexcusable.

And now, one year later, so many who are sick and older are told to wait because their/our co-morbidities don’t count. What bullshit!

This week, Massachusetts announced that in one month everyone will be eligible for the vaccine. So many disabled people, already at a disadvantage because of difficulty accessing the system, will be forced to compete with healthy, less-at-risk folks for those coveted timeslots. If the past is any indication of the future, a lot of disabled folks will end up at the end of the line, behind healthy folks. This is not ok.

There is nothing I can do about this. I called the governor’s office and reached out on social media. I have spoken up about it in the few ways that I could. I know that this post won’t change anything. But hey, this site is called Chronic Rants, after all, so I am ranting. I am ranting because once again, the government is being ableist and getting away with it and it makes me want to scream.

Maybe we shouldn’t be first, but we absolutely should not be last.


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