“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?


A little fur goes a long way

January 13, 2022

One day I was in so much pain, I was barely holding myself together. I went to my chronic pain support group. As I spoke, I teared up. My friend sitting next to me gently placed her hand on my arm, on a spot that’s usually fine, but I winced and pulled away in pain. It was a bad day. Everything hurt.

After the meeting, one group member let her service dog off duty, and he happily went around the room soliciting pets. When I pet him, the pain melted away and I felt so much better. It wasn’t until an hour after I got home that the pain came back to the level it had been before. That’s when I knew that it was time to get a dog.

Or so I thought. I did try to adopt a dog before realizing that it wasn’t going to work. I wasn’t ready. I was devastated.

Fast forward 5 years, and I was in a different place, both literally and figuratively. Now I lived in a first floor apartment, so taking a dog outside wouldn’t involve any stairs like it had before, or the walk down a long hallway and then navigating an old-fashioned elevator with manual doors. I was also in much better health, all things considered. I had been dog sitting for several years and loved it, and knew that I could manage to care for a dog for a few days or a week at a time. Then the pandemic hit and my dog sitting petered out. People weren’t travelling, so they didn’t need me to watch their dogs. I missed caring for dogs so much, and needed to do something about it.

I had thought about fostering for a while, and I finally decided to try. With so many people volunteering, though, they didn’t need more help. I waited. Several months later I tried again, and was accepted to a program!

I have my third foster dog sitting by my desk now. I still want my own pup, but this has been an amazing experience, and it has shown me that, yes, I am ready to get a dog of my own! My hope is that 2022 will be the year. It’s going to take a while to find the right dog for me. I’m feeling very insecure about the entire thing. What if I choose the wrong dog? What if I can’t handle it? But every time I pet a dog, I feel so much better. I feel happier. I feel more relaxed. Even though I want the dog to leave, I love having them here.

That’s right, I want the dog to leave. Sort of. When I have a dog with me, I look forward to the day they go back to their owners (if I’m dog sitting) or get adopted (if I’m fostering). I’m tired, and I want to sleep a little later, not have to take walks at night, and have more time to myself. But every time they leave, I miss having the push to exercise regularly, I’m more tired despite getting more rest, my pain is worse, and I feel more alone. Life is simpler, but I don’t feel better.

Then the next dog arrives, and the first days of fostering are tiring and stressful as I learn about the dog and they learn proper behaviors. Then we settle into a routine and I love them and I don’t want to let them go. Still, there’s the part of me that longs for them to leave so I can rest. But they leave, and once again, I’m more tired and in more pain, and I miss having a furry friend around. Plus, the apartment feels so empty. On balance, I’d rather have a dog here.

As I type this, I’m looking into the big brown eyes of the sweetest boy in the world. He’s staring back, and just started to wag his tail. A dog won’t solve all my problems, and life won’t be perfect, but I sure would love to have a furry friend of my own around all the time. Well, most of the time. And the rest of the time, I’ll just have to deal.

Do you have a furry friend at home? Please share nice stories about how they help you to feel better mentally, physically, and emotionally!

So 2022 is the year for me to get a dog. I haven’t found the right pup yet, but I’ll be looking. And in the meantime, I’m lucky to have sweet furballs around to make me feel better.


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.


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