“Women’s health” is still health – so why don’t we talk about it?

January 27, 2023

It’s been too long, and I’ve missed you all! After hundreds of posts (this is #799!) you’d think I’d have run out of things to say about living with chronic illness, but not yet. Sadly, there’s always something else. I have something particular on my mind today, and from what I’ve heard, a lot of you have had this on your mind at some point, too, so let’s dive in. Maybe in writing this, I’ll figure out what I should have said yesterday….

I had my big lightbulb moment 8 or so years ago, sitting at lunch with some other folks from my chronic pain support group. We had just finished the meeting, and were generally chatting. One person talked about her endometriosis pain, and the only guy there was uncomfortable and asked that we not discuss it. I was horrified. Why should we not discuss it? It’s what she was dealing with! Why do so many people of all genders feel that it’s ok to minimize or ignore any problems around menstruation, women’s reproductive organs, and women’s genitalia? Ok, I know the answers, and I won’t get into all of that. but let’s talk for a moment about the bigger picture here.

Pain is pain. Her endometriosis pain was as valid and worth talking about as his rheumatoid arthritis pain and my connective tissue disease pain. And by not talking about it, not only are we hurting sufferers by forcing them to be silent, but we are also limiting knowledge for everyone. I had heard at a young age about periods being on a regular cycle, but I was older before I understood that was a real thing for many people. It felt like a myth to me. To be honest, I still find it hard to believe that there are people who can predict when they’ll get their period, how long it will last, and how heavy it will be.┬áSpeaking of which, I was also shocked that my amount of bleeding wasn’t normal. Again, we don’t talk about these things, and I hadn’t known.

So often, anything related to menstruation (or even women’s emotions in general) are passed off as being due to hormones, as if (1) everything can be attributed to hormones and (2) anything caused by shifting hormones is invalid. WRONG!

And this is why this topic is on my mind today. Thanks to polycystic ovary syndrome (PCOS) I have a very irregular and often heavy period. Yesterday I was in a lousy mood, and a bit impatient with the person I was working with via Zoom. I wanted to explain that it was because of my period. But I didn’t. This is a relationship where I definitely would have said I was grumpy because of severe knee pain, but mentioning my period felt inappropriate. And I was afraid of being passed off as hormonal.

Sure, sometimes the grumpiness is hormonal, but that’s not what it was yesterday. Yesterday it was that my period disrupted my sleep two nights in a row, every time I stood up I felt myself leaking, I was having to go to the bathroom constantly, my appetite was all messed up, and I had lost a lot of blood, so I was weak from the blood loss on top of the rest. (More than once I have had a doctor send me to the ER due to blood loss so I could be checked out. It wasn’t to that point, but it was still a lot.) I think that anyone who had these symptoms could have felt grumpy, too. If a guy had suffered two nights of bad sleep and then had lost a lot of blood, I doubt anyone would tell him to cheer up, get over it, or “just deal with it.” Yet we give that message to anyone who menstruates. That’s really fucked up.

And frankly, if my moodiness had been due to shifting hormones, that would have been perfectly valid, too! Shifting hormones sucks, and it’s treated as a minor things that women should be able to…. what? Ignore? “Overcome”? I’m not sure what is even expected, but I know that it’s unrealistic. At their worst, those hormones have been all-consuming for me, and it can really suck to live that way for even a day or two. I have struggled with it, and being told it isn’t a real issue is definitely not helpful.

I want us to be able to talk about this. If I’d been talking to a cis woman or a trans or non-binary person who had gotten periods, I might have said something more honest. But since I was talking to a cis man, I simply said that I was tired from two nights of bad sleep. It was a woefully inadequate partial truth. What should I have said instead?

What I want is for “I’m sorry I’m in a bad mood. I have my period and the blood loss and lack of sleep are getting to me” to be as easy to say as “I’m sorry in I’m a bad mood. I have a lot of pain in my knee today and the pain and lack of sleep are getting to me.”

What do you think? Should I have said the former? What would you have said? I’m really curious to hear from others who have been in similar situations. The whole thing is frustrating. We all know that sometimes that hardest part of chronic illness is the lack of understanding and compassion from others. And it’s so much worse, I think, when it’s not considered socially acceptable to even mention what we’re dealing with.


Facing roadblocks to treating my thyroid disease

November 17, 2022

When I had my thyroid tested over the summer, the numbers were…. weird. Typically you want your TSH to be at the low end of the range, your Free T3 to be high in the range, and your Free T4 to be in the middle (or a bit higher) part of the range. I have hypothyroidism so sometimes my TSH is high and my Free T3 and Free T4 are low. That means I need to increase my medication. Every year or two I become hyperthyroid (TSH is super low and Free T3 and Free T4 are way too high) and I reduce my medication. Then a year or two later I become hypothyroid again and I increase my medication. I’ve switched back and forth between 3 and 4 pills for years. So what went wrong?

The first thing that went wrong was that my amazing primary care practitioner (PCP) retired. He managed my thyroid and adrenal care, and I’ve been feeling lost without him. And not too long before that, a Facebook group where I used to get advice changed, and now they no longer accept member questions, so I can’t get advice there from knowledgeable patients. I feel like I’m on my own.

Next, over the summer I got my iron tested before getting an iron infusion and I asked to get my thyroid tested at the same time since it had been a while (I shouldn’t have to ask!) Oddly, my TSH was really low, but the Free T4 was low, too. And the nurse practitioner (NP) didn’t run the Free T3 at all. (Argh! That would have been helpful!) This made no sense. They shouldn’t both be low. Always, one should be high while the other is low. My only thought was that anemia can affect thyroid levels, so maybe things would even out after my iron infusion. Too bad I couldn’t ask my former PCP for his ideas.

Meanwhile, I had gained a lot of weight in a way that made no sense. My activity level had increased, if anything. My diet was really good. Sure, I have some chocolate here and potato chips there, but not a lot of either, and no more than I’d been eating before. I eat a lot of meat, eggs, and vegetables. I eat very few processed foods. Maybe I could cut back on quantities? I suppose I could, but again, nothing had changed, so I shouldn’t have gained any weight, never mind 10 pounds in a short time. Usually when I gain weight for no reason it’s because I’m hypothyroid. I’ve had a few other symptoms that could point to that, too. But I’m at 4 pills, so what’s going on? Again, asking my former PCP would have been nice.

Finally it was time to check my iron levels again, and I asked the NP to run the thyroid tests again, too, this time including the Free T3. Here’s where it gets especially weird. I’m no longer anemic, so I expected my thyroid levels to be better. When I saw the results, I immediately knew I was in a hypothyroid state. The TSH was within the “normal” range but not the “functional” range. For someone with hypothyroidism, you generally want your TSH under 1, and for me, it’s better under 0.5. It was over 1.6. The Free T4 was well below the middle of the range. And the Free T3, the most important number for me, was below the “normal” range altogether, when it should be near the top of the range!

I told a friend that I had good news and I had bad news. The bad news was that I’m in a hypothyroid state again, but the good news is that I now have a fix for my weight gain and other symptoms. But the more bad news is that I have no easy way to handle this. Before, I could have emailed with my PCP and he’d have told me to increase my dose. I could have asked some basic questions. Or I could have made an appointment to ask the myriad more complicated questions I have: Could the end of daylight savings time that week have impacted my results in any way? I’ve been lowering my adrenal medication (per doctor’s orders) and that could have impacted this, but in what way? If I’m at my historically maximum dose, this must mean that my thyroid is deteriorating. That’s expected with Hashimoto’s Disease (it’s an autoimmune disease, where my immune system attacks my thyroid) but after so many years of stability, this is surprising. What could be causing this sudden increase in deterioration?

But alas, I can not ask him these questions. I considered my options. There’s the doctor I saw once as a potential replacement for treating my thyroid and adrenal issues. He seems good, but he doesn’t take my secondary insurance, so he’s going to be expensive. Plus, he’s older (I’d guess early 60s) and I worry about him retiring soon. But last week, to my shock and delight, I got a call from my NP’s office (which is also my former PCP’s office) that they just hired a new doctor that they’d like me to see. She’s an integrative medical practitioner and yes, she has experience with thyroid and adrenal issues. And that practice takes all of my insurance. I could hardly believe it! But the soonest appointment wasn’t until the end of the month. Until I meet her, there’s no way to be sure she has the experience that I need.

Meanwhile, I’m overweight, losing my hair, getting zits, and exhausted. Yesterday I had my first migraine in several years. I want to just take that extra thyroid pill! I have no doubt it’s the right move. What to do? With my old PCP, I might have just taken it while I waited to hear back. I do have plenty of pills for that. But I don’t want to make a bad impression on the new doctor. Isn’t that absurd? But it’s the way the “game” works. And while I know it’s the right move, I also know that taking too much of this medication can be dangerous, so I do want to be careful. Plus, I want to know her thoughts about the impact with my adrenal meds. Should I lower those more first? Or take the higher dose of thyroid med first and then lower the adrenal med some more? I would guess the latter, but I’ve only been on the adrenal meds for a few years and don’t have as much experience with them, so I’m not completely sure. The thing is, I think I’ve been hypothyroid for months, so I guess I can wait a few more weeks. But just in case, I did make an appointment with that other doctor for the following week. That way if the new one isn’t helpful, I have a backup plan.

And just as I figured all of this out, I got an email from my NP: “Good news, all of the test results are normal!” Um, what?

There’s always something with chronic illness, isn’t there? This is this month’s problem (well, one of them.) Next month I’m sure there will be something else. But I’m grateful, because at least this is a known problem with a known solution, and that’s all too rare. Now if I can just find a knowledgeable practitioner to help me address and treat it. Wouldn’t that be a novel approach?


Where have all the integrative doctors gone?

October 13, 2022

It started out bad. Then it got worse.

It took me years to get the right doctors. Through hard work, luck, determination, and some more luck, I finally managed it. My primary care physician (PCP) was kind, thoughtful, and smart. He knew a lot about how to treat thyroid conditions beyond the most common conventional approach. He knew how to treat adrenal insufficiency. He was fantastic. And then he announced his upcoming retirement.

It was 6 months away, and I was immediately worried. He promised that he would help me find someone, but we kept hitting dead ends. This doctor didn’t take my insurance. That doctor didn’t know much about thyroid treatments. That other doctor also didn’t take my insurance. Another doctor didn’t recognize adrenal insufficiency as a medical condition (WTF?!?) We hoped that his replacement could treat me, but they were having trouble finding someone to take his place.

Then my women’s health doctor left very suddenly. At my last appointment, we’d been talking about how she’d been at that practice for 25 years and planned to stay until retirement. Two months later, I got a letter that she’d had to leave due to a family emergency. She hoped to one day return to practicing medicine, but wasn’t sure when, or even if, that might happen.

Like my PCP, my women’s health doctor was fantastic. She always asked me questions about my entire body. She wanted to know all about what was going on with me. She was kind, caring, insightful, and smart. She knew how to properly treat with bioidentical hormones, and she also understood why those could be problematic for me, even though I still needed them at times. And she was gone.

Her letter included a list of doctors and practices to try. I called the first one on the list. They didn’t use bioidentical hormones at all. I called the next one. They didn’t take my insurance. And on it went.

My PCP officially retired. His replacement was a nurse practitioner (NP) fresh out of residency. She had no knowledge of thyroid or adrenal treatments. She agreed to keep writing my prescriptions, but was clear that she didn’t want that to be long term. And if I had questions, she wouldn’t be able to help me. Fuck. These are tricky conditions and the medications often need to be adjusted in ways that can be hard to determine. I’ll definitely have questions.

The hospital won’t let an NP be a PCP (insurances in the U.S. require everyone to have a PCP).) She’d suggested I speak to the administrative assistant about being assigned an official PCP in the office. The admin, who I’d spoken with more times than I can count, remembered me, and we had a chat. Another doctor had also left the practice. They had wanted to hire 2 or 3 new doctors and I asked how that search was going. She told me they were having trouble finding people, and that few were even applying. Then I asked if she knew how things were going to replace the women’s health practitioner I’d been seeing. She told me they weren’t even trying. They had wanted to replace her at first, but there are few in the country who do what she did, with her specialized knowledge, and they couldn’t even get applicants. So they stopped trying, and instead were focusing on the search for new doctors, which was also not getting very far. What’s going on here?

This isn’t any old office, you see. It’s an integrative medicine practice. Integrative medicine is even in the name. That’s why I wanted to go there to begin with, and it’s why I had liked these two practitioners so much. It’s also, without a doubt, why my health improved so much. I’ll let you read back over old posts for those details, but suffice it to say, I need an integrative approach. Alternative medicine helps, but only to some extent. Conventional medicine helps, but only to some extent. I need both, and they need to be combined, not separate.

For now I’ve found a doctor who, while not as great as my PCP, can help with my thyroid and adrenal stuff. He takes my primary insurance but not my secondary insurance, so I still need to get the new NP to order tests so I don’t have to pay a small fortune. I’m not exactly confident in how well that will work. And he appears to be in his 60s, so I’m not sure how long I can see him before he retires. And without these medications, I’m totally and completely screwed.

So my question is, what happened to all of the integrative practitioners? Are there any left? Are doctors no longer taking that approach, or maybe they are but they aren’t in Massachusetts? What are the patients who need them supposed to do? I’m scared, and I don’t know what to try next.

On the bright side, it’s autumn in Massachusetts and totally gorgeous, so here’s a picture of a tree for you. Enjoy! And if you can offer any tips for finding an integrative practitioner in Massachusetts who takes Medicare and MassHealth, and who has knowledge of Hashimoto’s and adrenal insufficiency, I would be INCREDIBLY grateful!


When I’ll feel Covid-safe around people

August 26, 2022

Two-and-a-half years into this damn pandemic, I’m still spending a whole lot of time alone, and it’s hard. I miss people. I miss regular socialization. I miss dating. Actually no, I don’t like dating. But I miss the potential for a relationship. I miss sex. I miss casually hanging out at a friend’s house, going to the theater, visiting to a museum, not having to rely on New England’s unpredictable weather to determine if I’ll get to see people. I miss parties and Meetup groups and all the other random in-person indoor stuff that I took for granted.

Yet, so many people are out in the world, acting like there’s no pandemic anymore, or like getting Covid is no big deal. Most others seem to be somewhere in the middle, being somewhat cautious but still socializing and attending work and school in person. A lot of my family and friends in the middle have been asking me when, if ever, I’ll be willing to go out again. I think they expect this question to trip me up, to prove that my expectations are unreasonable.

But the truth is, I have a mental list going of things that will make me feel safe enough to join my family for Thanksgiving dinner or to go to a play, and they aren’t at all unrealistic. I just wish they would happen sooner than they probably will. Here are some of mine and I’d love to hear yours, so I know what other excellent possibilities are out there.

  1. Widespread mask use. This wouldn’t make me feel comfortable in all situations, but in many. Today I called a dozen hair salons and the only ones that have people wearing masks are out of my price range. The others say they don’t have any protocols, no masks. WHY NOT?!?!? The pandemic is not over and they’re only prolonging things and making it harder for people like me. If everyone wore masks I still wouldn’t go to the theater, but I’d feel more comfortable at the grocery store. Please please please wear masks, people!
  2. Masks that 100% (or maybe 99%) protect the wearer. Speaking of masks, this would be huge. I’d feel much better about the 90% of unmasked grocery shoppers in the store with me if I knew that my own mask would provide all the protection I needed. Then I wouldn’t have to rely on others so much to protect my own health. Of course, these would also have to be affordable and widely available. And if they were reusable, that would be even better!
  3. Accurate tests. If at-home tests gave fewer false negatives, and if they gave positives as soon as someone was contagious, I would 100% be hanging out indoors with family and friends. Would I go to crowded events with strangers? Nope! But at least I’d get to be around people I love. And it would open up dating possibilities, too. I still wouldn’t want to go to restaurants, etc. on dates, but at least as we got to know each other, I’d feel safer being indoors alone and maybe even kissing *gasp!*
  4. Vaccines that prevent contracting Covid and/or transmission of Covid. Back in 2020, we thought vaccines would save us. We talked about herd immunity. The problem was that the vaccines we got don’t prevent anyone from getting Covid or from passing it along to others. Don’t get me wrong, I’m thrilled we got vaccines that reduce the likelihood of hospitalization and/or death. I just want more. If we had vaccines that stopped people from spreading Covid, I’d be hanging out with my vaccinated family and friends, because I wouldn’t have to worried about them giving it to me or about me giving it to them. If we had vaccines that stopped people from getting Covid at all, I’d be feeling much safer as I go out in the world, and then I’d probably go back to being in public spaces again.
  5. Vaccines that prevent long Covid and disease latency. It’s hard for me to explain to most people that I’m not worried about dying from Covid. I’m most worried about getting long Covid. And right now, the vaccines help me avoid dying, but they don’t help me avoid long Covid. I wish they did. Honestly, if long Covid didn’t exist and if we didn’t have a concern about disease latency (when symptoms might appear years or even decades later, like with post-polio syndrome), then I wouldn’t be so concerned and I’d be happy to at least be around family and friends, and I would consider being out in public spaces more. For me, this would be a gamechanger in a way that I find hard to explain to most people.
  6. A near miss: a cure for long Covid. To be honest, I’m not sure how much this would help at this point. Before I was worried about disease latency, a long Covid cure would have been enough to get me out and about again but now, unless it would also cure any future symptoms, I don’t think it would do the trick for me. There’s just too much at stake with the disease latency risk. I watched a loved one deal with post polio syndrome for years and the possibilities with Covid latency feel too real to me.

So that’s my current list. I think that some of these are more likely in the short term than others. #5 would be amazing, but I’m not holding my breath for that one any time soon. #4 feels more likely, but only if we don’t lose momentum in terms of funding research and innovation. The ship has sailed on #1. Let’s face it, too many people are selfish assholes. They don’t believe they’ll get sick and don’t care of others do. But #2 and #3 feel like they have potential, even in the near future.

Experts are already working on creating more accurate tests. Imagine what a gamechanger that would be! Sure, I still wouldn’t want to hang out with a lot of strangers, but it would open the door to feeling comfortable with family and friends. I’m thinking about all of the people I’d want to see who, right now, I’m not visiting with indoors. It would be amazing!

I don’t know if anyone is working on creating masks that better protect the wearer, but I sure hope that they are! I’d love to have more control over my own safety. Not only would I be able to spend more time with family and friends, but I’d feel more comfortable around strangers, too. No, this wouldn’t be the perfect solution, but it would open up the world for me and at this moment, that would be enough.

Even before the pandemic, I struggled with loneliness. I’m an extrovert who lives alone and who, due to health issues, often doesn’t go out for days at a time. I’m at an age where my friends are mostly married and have kids in addition to working full time, so they are understandably busy with their families when they aren’t at work. I get it, but it also makes it harder for me to spend time with them. That left me spending a lot of time home alone, taking walks alone, and doing activities alone. And that was before the pandemic. Now I’m so much more isolated and damn it, I just want to be around people! I want to spend the weekend with friends out of town, hug my mom, kiss a date, go to a party, and feel safe wandering the aisles of the craft store. Is that so much to ask?

For now, though, I’m sitting at home. Today I’m seeing a friend – via Zoom. It’s not the same, but it will have to do. And despite what so many others think, I’m not planning to sit at home alone forever. I am not wrapped up in fear with no foreseeable way out. I see a way out. I just need scientists to make it happen. Please.

What about you? In what ways do you think there could be a safe way for those of us who are at higher risk to socialize again? I’d love to hear your ideas!


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