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.


Is it medical trauma-induced anxiety or rational concern?

August 17, 2021

Heads up: I’ll be talking about my Covid-related anxieties. If this is going to make you anxious, you may want to proceed with caution or skip over this post.

I’m stuck. I’ve been stuck for a long time, but now, suddenly, I’m running out of time to become unstuck. There’s a big event in just over a week and I’m supposed to be there. It was supposed to be last year around this time, but as the pandemic got worse, they decided to move things back by one year. I wondered at the time if one year would be long enough. I’m still wondering.

These folks are so close to me. They’re like family. In some ways, we’re closer than family. Last week she told me that if I come, she’ll pick up food for me the day before when she’s in town to do other last-minute prep, and she told me to double-check the restaurant that she thinks will be safe for me, but that of course I can choose any restaurant in town that I want (it’s a small town, so not a big deal logistically.) How sweet and thoughtful is that? She’s preparing this enormous party (think like a wedding, bat mitzvah, or quinceaƱera), planning every detail, including hiring caterers, and she thought about my food needs! I told her that I planned to bring my own food and she said that she knew I’d be bringing a lot of food for the trip (I’ll be staying in a hotel overnight if I go) and that she didn’t want me to have to worry about bringing Tupperware to the party. I’m telling you this to illustrate how sweet and thoughtful my friend is. Wait, did I say that already? Well, it should be said again, because she is!

We’re close, and we would do anything for each other. But now “anything” is being put to the test. The party will be all outdoors. There will be a formal part, with 150 people sitting in chairs for 2 hours, everyone wearing masks. I will try not to melt in the August heat. Then there will be talking and food. Then back to the hotel to rest for a couple of hours. That night there’s a party with 100 people. Almost no one will be wearing masks at the party. Many of the adults will be vaccinated, but there’s no way to know if they all will be. I don’t know if the teenagers will be. Of course, the kids under 12 (there won’t be many, but at least a half dozen) won’t be vaccinated. People will be eating, talking, and dancing.

I can try to sit at the edge for that first part. Drag a chair away from the crowd and wear an N95. I can stay away from the people talking and eating in the afternoon, and eat my lunch in the car or back at the hotel, if I’m willing to wait that long. At night, I can try to keep my distance as much as possible, again wearing an N95 (can I wear the same one again or do I need a new one?) I’ll need to avoid getting close to people I would typically be hugging. I wouldn’t dance, even during the culturally traditional dances during which I may no longer back to dance fully, but I would typically at least stand at the edge and clap and wiggle a bit. Instead, if I go, I’ll be pretty far from the action. I can keep my mask on when others eat, and eat my own food afterwards. It’s all doable. But I’m anxious about it.

(Side note: I know that this entire event would take a huge toll on me. I would need time to recover for all of my usual health reasons. No part of this would be easy, even if Covid weren’t a consideration. It’s just that those other parts wouldn’t stop me. I already decided that it’s worth feeling bad for a few days or more in order to be there. It’s Covid that’s the issue now.)

The problem is, I can argue both sides of this really well. I know that the odds of me getting Covid are really really small. My state (where the party will be) has one of highest vaccination rates in the country. Everything will be outdoors. I will take every precaution. I’ll wear N95 masks. I will socialize only with 2 friends, both of whom are as careful as I am (and who, as of today, are still planning to attend.) We will eat together, away from the others. At the hotel, we will check in and go straight to our room, and stay there until it’s time to head out to the afternoon party. In the morning, we will head home. It will be good for me to get out of town. It will be good for me to be around people I love. I want to support my friend and her entire family.

Now for the flip side. The Delta variant is pervasive. Yes, we have a high vaccination rate, but it’s still too low for herd immunity. Vaccinated people can transmit the virus. I have plenty of reasons to think that if I get Covid, I’m at risk for a more severe case. I got the vaccine, but I have reason to believe it could be less effective for me than for others. People will be talking and dancing, which will expel more air. There will be few masks. There’s a tent, so even though it’s outside, air can’t travel up. During the first part, we’ll be spending 2 hours sitting in chairs. I’ll try to be on the edge of everyone, but I’ll probably still be near others. We’ll be outside, but still, the proximity will bother me.

I could go on and on. And I have. Several months ago I didn’t think I’d go, but I was hoping that might change. Last month I was pretty sure I’d go, and I felt good about that decision. That’s when my friend and I booked a hotel room. We were ready! Then Delta surged and case counts skyrocketed. And now I’m in hell. My therapist this morning actually said that (well, she called it “purgatory”.) She feels that if I don’t go to this party, it will be due to anxiety, not legitimate Covid concerns. Her reason: I’m so careful because of my anxiety that that itself means I’m incredibly unlikely to get Covid. She’s probably right.

But still, I’m anxious. I keep thinking about all of the potential ways this could go wrong. Every time I think about missing this event, my heart breaks a little bit. This is a major life milestone for people I love and I want to be there. Our friendship will survive if I don’t go. She knows how much I want to be there and how much I’m trying to make it work out. She knows that if I stay home, it won’t be a decision that I make lightly. But I want to be there. I should be there.

The thing is, after 30 years of health problems, it’s hard to shake off the feeling that I’d be walking into the lion’s den. I’ve experienced medical trauma after medical trauma after medical trauma during those years. I have been scolded, gaslighted, and maltreated by doctors. I have been sickened, ignored, and abandoned by healthcare systems. I have lost relationships with people close to me. There’s some part of people that thinks, “It will all work itself out just fine.” I don’t believe that. I’m not sure that I ever have.

Maybe a few weeks from now I’ll tell you that I skipped the event and I’m glad I did. Or maybe I’ll be filled with regrets, as we find that no one got sick and I could have safely been there. Or maybe I’ll go and be glad that I did. Or I could go and get sick and regret it, even though I know that last one is incredibly unlikely. But for now, I have a few more days before my self-imposed deadline to decide. I sure wish I knew what I was going to do.

I welcome your input. I feel stuck, and I’d really like to get unstuck. Two days ago I was pretty sure I was going. Yesterday I was pretty sure that I wasn’t. Today I think that I might. Can you offer me anything useful here to help me sort out how much of my concern is reasonable and how much of it is the result of past medical trauma that has no bearing on this decision?


Taking a chance and hoping it works

June 17, 2021

I’m exhausted. I’m so tired that I just want to fall asleep right now, sitting in my chair. That’s not like me. Sure, I have chronic fatigue, but the exhaustion usually causes me to feel unable to do things, but not to feel sleepy quite like this. This week is different, though. And the reason is my new temporary 4-legged roommate.

If you’re been reading this blog for a while, you know that I want a dog. I have wanted a dog my entire adult life. First I worked and travelled too much, and then I was too sick. Recently, though, my health has improved and stabilized. It’s not great, and I know that a lot of the stability comes from being home during the pandemic. Without spending energy on seeing friends, going to events, running errands, or seeing most doctors in person, I had less fatigue, less pain, and generally better health. Was it great? No, of course not. But it was better. It allowed me to think, not for the first time, about getting a dog.

I’ll skip the details, but basically I have a temporary canine friend here for a while. It will probably be for a month or two, but could be a bit less or a bit more. I’ve done dog sitting before, but this is different. Harder.

For starters, with most dog sitting there’s a known end date, and my dog sitting has never been for more than two weeks. This time there isn’t an end date, and it will definitely be more than two weeks. Also, the dog is usually well trained and this guy isn’t. He’s somewhat trained, which is great (no accidents!) but not entirely. I have had to take him for more walks than with other dogs. I have to watch him carefully to make sure he doesn’t get into things that he shouldn’t (he tried to chew the edge of my carpet.) He’s just over a year and has puppy energy. He naps, but then wants to take a long walk and play.

Thankfully, he sleeps through the night, because I’m not sure how well I’d be functioning if he didn’t. And it’s in the 70s and not humid, which is the best weather I could hope for at this time of year. Still, I’m worn down. Yesterday, during our 86th walk (ok, maybe only the fifth of the day, but it felt like more!), I began asking myself what each of my doctors would say about my current state. My guesses:

  • Therapist: Keep at it, you can do this. But be sure to rest and don’t overstress your adrenals.
  • Rheumatologist: Are you resting enough? Do the best you can, and we’ll see how you do, then talk about it as things progress.
  • Naturopath: I think you’re doing too much. You need to slow down.

Of course, I could be way off. Maybe they’d each say something completely different. Not that it matters, because I’m going to keep at it. I know things will get easier as we get to know each other, form routines, and settle into patterns. And it’s short term. I’m not going to have him for the next ten years, only for a matter of weeks or months. And he’s so cute! I have to admit that when I’m exhausted and then look at that adorable face and pet that soft fur, it does help me to feel better. But then I remember that I need to wash the dishes, and I’m just so tired. I’ve even been eating less the last couple of days because I’m just too tired to eat and digest, and to get up for more food.

I knew the first days and weeks would be the hardest. I’m hoping that he’s with me for long enough that I get to discover if things will get easier. Maybe they will, and I’ll learn that I really can manage having a dog. I hope. Because if not, then I’m going to have a hard time recovering from this, both physically (omg, I’m so exhausted) and emotionally, because I would need to give up on the hope of getting a dog, at least for a while. Only time will tell. I’m really hoping this works. But either way, at least I’m trying. And I feel good about that.


Feeling overwhelmed by All The Things

May 20, 2021

I have a bad habit of doing too much. The problem is that I want to do All The Things. Something looks interesting or exciting and I add it to my long list of things to do, which I know I’ll never complete. Then something looks extra interesting and I decide to do it now. Or I notice a thing from my ever-growing list and think, I should really do that now. It seems like a good idea in the moment. But then…. Yeah.

I keep adding new things without taking anything away, and you know what happens? Predictably, I get completely overwhelmed. Of course. It’s so obvious right now, but when I’m in the moment, I don’t realize it’s happening. This time, it got to the point where I realized I didn’t feel like I had time in the middle of the day to read a book or enjoy a spontaneous phone call with a friend. I’m disabled and unable to work full time, but I’m trying to work or be “productive” during as many hours as I can. And sometimes that’s too many hours for my own good. Plus, even my current level is too much, but starting next week I’ll be adding a new, big thing. (It’s so exciting! I’ll tell you all about it after I start.) So last week I decided that enough was enough, and I pulled out a pen and paper and wrote down everything I’ve been doing.

It’s not like I didn’t already know what’s been filling my time, but I need to see it all listed out. I went through the last few weeks and the next few weeks in my calendar. I went through my weekly to-do list. I wrote down the obvious things like paid work and medical appointments. I included my volunteer work and time I’m spending on a book I’m writing. I added in social time with friends. I noted the less-obvious-but-completely-necessary things like cooking, cleaning, daily exercise, and not-daily-but-should-be-daily physical therapy. And then I looked at the list, shook my head, and said out loud, “No wonder I’m so stressed out and overwhelmed.”

The question was, what to do about it? Nothing in that list on its own was burdensome, but it added up to too much. We all have limits on our time and energy. We have limits from our health, jobs, families, and the number of hours in a day, among other things. For me, it’s mainly my health that limits me. I needed to get within my limits.

Everything on my list is important to me, but something’s gotta give. I eventually decided that I care enough about it all that I won’t remove anything, but I will reduce. That volunteer work is too much. So I talked to the other volunteers and one of them is happy to have me hand over several projects to them. That not only reduces the time I’ll spend overall, but also my stress levels and overwhelm, since I’ll have less responsibility there. (I’ll still be volunteering there, but on a lot fewer projects.) Instead of working on my book every week, I’m going to work on it every other week. I hate to cut back on paid work, especially since I have so little of it, but I have to prioritize health appointments and exercise, home stuff (like cooking and laundry), and social time with friends. To make room for those, I’ll be cutting back a little bit on paid work.

I want to do more more more. Always. But my brain is writing checks that my body can’t cash, and that’s no way to live. This past week I’ve been making an effort to take more breaks. I read a little more and worked a little less. That means that some things are getting done more slowly than I’d like. I had to order a supplement that was running low. I also wanted to add a new B vitamin when I placed the order. The week before I had researched several B vitamins online and then called a few companies to ask about their vitamins’ ingredients, and they either said the items contain gluten and/or corn, or they couldn’t tell me. It was stressing me out, and taking way too much time. I was running low on the necessary supplement. So you know what I did? I ordered that supplement and decided the B vitamin has waited this long and it’s ok if it waits a bit longer. Was I happy about it? No. But did I have less stress and a little more time to relax? Yes. And that makes me happier now that it’s done.

I am making a huge effort to not fill every minute. If I have half an hour free before a Zoom call I could try to catch up on email, but usually I just feel overwhelmed and end up scrolling Facebook, which doesn’t help at all. Instead, I am now trying to use that half hour to take a walk, call or text a friend, read a book, or pick up my knitting. Or I check in with my body and realize I’m tired and just need to rest. This is so much better than continuing to do things and not realizing until it’s too late that I overdid it.

The key now will be to keep it up, and to stop trying to squeeze so much stuff into my non-rest time. Just because I am not resting at this minute does not mean I have to “do something.” Ok, maybe at this moment I’m busy typing out a blog post. But you know what I mean. I’ve felt bad about writing on here so much less often, but I knew it was what needed to happen. Then I felt inspired to write on this topic, because it’s one that I’m pretty sure many of you can relate to and I knew I had something to say, and here we are. I had the time and I’m not feeling rushed.

I now have exactly 2.5 hours before I need to do a particular thing later. I have been making a big effort to have fewer items on my to-do list each day, and today I managed it. In those 2.5 hours I don’t have to do anything except take a walk and eat dinner. It would be nice if I could do a few physical therapy exercises, too, but it’s a gorgeous day outside and I might try to sit outside and read a book for a bit. That’s it. Sure, I did lots of things this morning. That happens. I dealt with some paperwork for a medical appointment. I finished filling out a 28 page form for my moderate-income housing and pulled together the accompanying 35 documents (seriously, WTF?!?), which I need to do each year. I took a walk. I spoke to my mom (while I walked – bonus for multitasking!) I ate lunch. I answered some emails and did a little client work and a little volunteer work (just a few minutes of each, but still.) I got advice from a friend. And now I am typing this. Seriously, that is already such a full day! And I feel the need to do more than that?!? That really has to change.

This has been a problem for me for many years. I do too much, cut back, feel like things are going better, add in some new things that strike my interest, and get overwhelmed again. I don’t believe I’ve broken the cycle completely, but if I can be in the “doing better” stage for a little while, I’ll be happy. And for now, that will be enough.

So tell me in the comments, do you struggle with this too? How do you handle it? How do you cut back when you want to do All The Things? I’d love any tips you can share!


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