Update on the trip dilemma

September 17, 2021

Several weeks ago, I wrote about my Covid-related anxieties about attending an event for someone very close to me. I so appreciated all of your helpful feedback, and wanted to give you a quick update.

I spoke with so many friends and family. I spoke with my therapist. And you know what eventually helped me make up my mind? It was the comments on my previous post. Hearing from folks with chronic illnesses who are also extra nervous about Covid was so different from the many other conversations I’d had. And finally, I knew what I was going to do: I went to the event.

I was very nervous about it beforehand. I was nervous on the way there. I was nervous throughout the event. I kept my mask on. I only took it off twice to drink some water. I kept my distance from folks. I wanted to dance, but didn’t (which was better for my knees, but even with the knee pain, I would have gladly danced if not for Covid fears.) Of course people were talking loudly over the music, and I kept trying to keep my distance, which only made folks speak even louder. When everyone ate, a couple friends and I stood outside of the tent, away from everyone else. I felt bad. We were at the hosts’ table – an honor – and I wanted to spend time with them, but I just didn’t feel comfortable. The whole thing was stressful, but I’m also glad that I went. At the end, I briefly hugged my friend and her daughter. And it felt amazing.

Ideally, once I left then I would have felt 100% fine, but I have to admit that a tiny part of me was still nervous. I was definitely glad when a week passed without news of any problems. And then I forgot about it for a while. At one point I happened to realize it had been more than 2 weeks since the event and I breathed a sigh of relief. Everyone was ok.

Thank you so much to everyone who helped me make this difficult decision. I’m glad I went, and I’m glad it’s over. I wish I could relax at a party with friends, but I’m just not there yet. Meanwhile, another friend is planning the same type of event for next year and none of us an even begin to imagine what things will be like that far out. I only hope it’s easier to make these decisions.


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?


What a decade!

July 22, 2021

Yesterday was the 10 year anniversary of this blog! Wow! And in true spoonie fashion, I was too busy, overwhelmed, and exhausted to write anything. Still, I couldn’t let this momentous occasion pass without saying anything. Well ok, I totally could, especially given how rarely I have managed to write here lately, but I really didn’t want to.

Closeup of pink flower surrounded by green leaves and pink petals from otehr flowers
A pretty flower, because sometimes we just need to enjoy the beauty of nature, even when we feel like shit

It’s strange to think that it’s been a decade since I started writing. At first I wrote every day. If I missed a day, which was rare, I would write two posts the next day. Some were just a paragraph and others were longer, but they were all personal and all about living with chronic illnesses and disabilities. When I think back, it’s hard to believe that was only 10 years ago, and hard to believe that was already 10 years ago. By the way, this is the 784th post on this site! (I’m amazed that I still have more to say.)

Back when I started this blog, I was working full time at a boring job, and I didn’t know that within a few months, I would be leaving full time work, probably permanently. I didn’t know I would get so fatigued that I wouldn’t be able to leave my home for days at a time. I didn’t know I would spend hours upon hours researching my illnesses in order to improve my health. I didn’t know I would write a book. I didn’t know I would keep this blog going for 10 years.

I sure didn’t think I would still be single. Or living way out in the suburbs. Or that I would become an outspoken chronic illness-rights advocate. And I definitely wouldn’t have guessed at the many diagnoses I have received in the past decade, diagnoses which helped me to finally pieced together the puzzle of my health problems.

Some of that was predictable in hindsight, but a lot was surprising. Especially the work piece. And the health piece. I never expected to get so sick. I didn’t think I would permanently give up gluten, or that doing so would make me feel so much better. I hadn’t heard of adrenal fatigue, but if I had, I may have realized a lot sooner that I had it and that I needed to address it. I wouldn’t have guessed that the popcorn I ate regularly was causing a lot of my distress (no more corn or corn derivatives for me!)

I have learned a lot from many sources, and all of you were a huge part of that. When I started this blog I never realized how important it would become to me. You all have reassured me when I doubted myself. You gave me advice on all sorts of issues. You offered practical solutions to logistical problems. You read my words, you offered community and kind thoughts. This blog has provided catharsis in a way I never would have guessed. Thanks to this blog, I finally realized that I needed therapy to help me address the many emotional issues that living with chronic illness had brought, and that has been immensely helpful.

Ten years ago I started this blog with the hope of forming a small community. I did that, but also so much more. Ten years and 784 posts has given me many gifts, and I’m thankful for all of them. I truly doubt that my health would have improved the way that it has without this blog and all of you. Thank you for reading, for your kind comments, for your advice, and for giving me a reason to keep on writing.

Sincerely,
Ms. Rants


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