To write or not to write…?

October 15, 2025

I was recently diagnosed with CPTSD, and while it’s not a surprise, I’m still adjusting to this new way of thinking about my mental and physical health. At the same time, I have been writing a book, and it touches on many (all?) of the experiences that led to my CPTSD.

This is my fourth book. The first got as far as a finished first draft, but never published. The second was published. The third was scrapped after about 12,000 words. And this current one, well, I’m not sure if I should continue it. I’m writing about the rotten things people have said and/or done to me related to my chronic illnesses. I’m using it as an opportunity to call out the bad behavior, offer examples of what to do better, and offer reassurance to folks with chronic illness that they’re aren’t alone in dealing with this crap. It’s a decent book so far, though I have a long way to go (it’s only 13k words so far) and the first draft is very rough.

Writing about these incidents has been eye-opening. Suddenly I am remembering both long-buried details and entire experiences. Seeing everything in one place is making me realize just how bad my past experiences have been. Sure, I knew that a few of them were particularly horrible, but seeing them all on the page, it’s impossible to ignore that the “death by a thousand cuts” that led to my CPTSD was building up for ages.

In many ways, writing this book is healing. I’m getting to explore my past, and talk about how I would rewrite it if i could. But it’s also difficult, painful, and at times triggering. I’m being careful not to write about the more difficult parts on my worse days, but it’s still tough.

Beyond that, I realize that if I publish this book, I will need to read these stories countless times. I will need to reread the book throughout the various stages of editing. Once it’s published, I will need to read sections out loud at events, though at least I can choose which of those to read. When people ask questions, I will need to reread parts to remind myself of what I wrote. This rereading will probably be useful in distancing myself from the events, but it could also be painful.

I continue to waver. Some days I feel like it would be healthy to finish this book, whether I ever publish it or not. Other days, I want to hide away from it all. I’m sure that I will be having many conversations with my therapist about this. In the meantime, it’s on my mind and in my heart.

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Posted by chronicrants

Wondering how to date in the Covid era

May 21, 2025

I’m dipping my toe back into the dating waters for the first time in a while. And I’m overwhelmed with trying to navigate this new reality.

When covid* first began, a lot of people did online dates, but those didn’t feel real enough for me. I now wish I’d done it! Eventually it felt safe to be outside with people, so I went on some dates that way. I had a bunch of first dates, and then there was one guy who seemed great, and we went on a couple of outside dates. But things fizzled because he was doing indoor athletics without a mask, so I didn’t feel comfortable being indoors with him and, let’s face it, a relationship can only get so far if you’re never going to feel comfortable being indoors and maskless with someone, and/or kissing them.

Then 2023 came along, and with it, a lot of added fatigue. Dating was out of the question. Just getting by day-to-day was all I could manage. It took a year and a half to feel somewhat better. I’m still struggling with added fatigue, but at least things aren’t as bad as they had been before. So, after a lot of procrastinating over the past several months, I finally set up an online dating profile yesterday.

Now the question is, how do I navigate covid-related risks? I don’t think I need to mention my concerns in my profile, or even in an initial chat – I can suggest a walk for a first date. Honestly, I can’t do coffee dates well anyway, since I worry about gluten in most coffee shops. But then I need to find a way to bring up my concerns. As it is, for many years I’ve had to find a way to mention on first or second dates that I can’t kiss anyone who has been eating or drinking gluten. That’s already sort of awkward, but at least it’s straightforward: if you’ve been eating or drinking gluten, or wearing lipstick or lip balm, then I won’t kiss you. But covid risk is much less direct. Everyone has some risk, including me.

Most people aren’t wearing masks indoors anymore. Should I only limit myself to dating people who mask? Probably. But talk about a small dating pool! Or what if someone doesn’t mask indoors much, but they work from home and don’t have kids and don’t go to big events? Or what if someone masks at home but they have kids who don’t mask at school? The possibilities are endless, and I’m not sure how to navigate them in a way that’s reasonable for myself. And if I don’t know what’s reasonable for myself, then I can’t possibly communicate my needs to someone else. Which makes me feel like I shouldn’t be dating.

I know that figuring things out as I go is probably reasonable in this situation, but it feels unfair to myself and to the other person (whoever that may eventually be.) Sometimes I just want to give up altogether, to stop masking, to stop trying to avoid it. But then, I think about the many people I know with long covid, and I think that I’m better off trying to avoid that.

In the past five years I have managed to not get covid even once. I’m sure that has been good for my physical health, but what about the toll on my mental health? What about the missed parties, the missed outings, the stress, the worry? Has it been worth it? Probably, but maybe it isn’t any more? How much longer can I live like this? I’ve gotten to the point where it’s fairly manageable most of the time, but dating throws a wrench in the works and I just don’t know how to handle it.

If you’ve dated in the covid era, how have you managed it? I’d love some advice!

*I made the decision not to capitalize COVID throughout this post. This is both because it’s easier to type it lower case, and also (mostly) because I find it jarring to read it capitalized in articles and didn’t want that to be a distraction.

2 Comments | Decisions, Fatigue, Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Have you tried NAD or PRT?

October 15, 2024

Hello friends, it’s been a while. I have thought about writing so many times but sometimes I was too fatigued, other times I was too busy, and then there were the times I wasn’t sure what to write about. Today, though, I want to ask if you’ve tried either of the new treatments I’m considering.

One of the many difficult aspects of living with a chronic illness is that we need to make difficult, complicated, often expensive decisions about our health. I am facing several of those decisions right now, and I’m at a loss. Something needs to change because the extra fatigue I have had over the past year and a half is having a very negative impact on my life. I would also like to understand why I suddenly gained 20 pounds, my blood pressure went way up (from 90/60 up to the “normal” range), and I developed a lot of acne, all within a year. I’d also like to know why none of my medical practitioners think this deserves attention!

Meanwhile, one of my practitioners suggested NAD treatment. This is a mitochondrial treatment that is used by her practice to help with fatigue and other symptoms. Other people use the treatment to help with anti-aging. Personally, I don’t know that I’d want to mess with my body for the purposes of defying aging, but I’d be very happy to try something that might help with my fatigue. Still, I have only found one person who has tried a version of this, and they weren’t do the version my practitioner recommends. While they did NMN, my doctor is recommending direct NAD+ if taking orally, or else direct NAD if taking through an IV. An IV is cheaper (none of this is covered by insurance) and I wouldn’t have to worry about gluten but it involves travelling, staying for at least 2 nights with a friend (the night before the IV and the night after), finding a dog sitter, and enduring a 6-8 hour IV. The oral version will cost more, I have to find a gluten-free and corn-free version, and I don’t always process meds well so there’s no way to know if it will even work. Then again, the IV might not work either.

I’d love to hear from people who have tried this, what they hoped to gain from it, and if it worked for them. I’m going to have another appointment with my practitioner soon and I’ll probably try the oral NAD+ if I don’t learn anything new before then. At least I could try it from home, and if it does work or I react badly then I can stop. If it works, then I could switch and do the IV later, when I can plan a visit out that way.

Typically I would say, “there’s no harm in trying” but this time, I’m hesitant. I suppose it’s because this is such a new treatment, most doctors haven’t even heard of it, and I don’t know anyone who has tried it. Still, something has to change. And what if it helps?

Photo taken from a mountaintop of green, yellow, and red trees below and blue sky with white puffy clouds above

The next thing I’m researching is pain reprocessing therapy. A friend had a lot of success with this and I absolutely want to try it. I’m just stuck on how.

Pain changes our brain. I already knew this, and it’s key to this treatment. Some pain we feel is due to structural issues that cause pain. Other pain is due to our brain’s rewiring. PRT trains the brain to tell the difference, and it can greatly reduce pain. According to a friend who is trained in this treatment, some of my pain should be treatable with this method, though not all of it.

So there’s no problem, right? Well the problem is that I don’t know who to see for treatment. While I could theoretically find a practitioner who takes Medicare insurance, it feels like searching for a needle in a haystack. If I can’t find that person, and it could easily cost several thousand dollars. Plus, I want to find someone who’s good! My friend who is trained in this method can’t treat me because it would be unethical. She did give me the websites with lists of practitioners, but it’s going to take a long time to call/email all of them, and frankly, I’ve been struggling to overcome the ghosts of my past medical problems to make these calls. It would be so great if I could get a recommendation from someone who has done this treatment already!

While I haven’t shared anything new or exciting today, I hope you take comfort in knowing you’re not the only one who struggles and feels overwhelmed with making medical decisions, researching, and choosing new practitioners and treatments. You’re definitely not! Meanwhile, please let me know if you or someone you know has tried either of these treatments – I’d love to hear about your/their experiences!

On a side note, I took the photo above from a mountaintop recently. I can’t hike up a mountain, but thankfully there are a few near me with roads we can drive up. They close for the winter, but right now it’s a gorgeous day trip and definitely worth the effort.

Leave a Comment » | Decisions, Fatigue, Frustration, Healthcare, Medication, Pain, Rants | Permalink
Posted by chronicrants

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?

2 Comments | Decisions, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

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