The past 18 days….

February 8, 2025

It’s been a time, hasn’t it? Even my friends in other countries are starting every conversation by talking about the current political situation in the U.S. I’ll warn you now, if you’re here for some magic solution to what’s happening, I don’t have it. I wish I did.

I’m watching my trans and nonbinary friends suffering. My fellow Jews are thinking about how they’ll leave the country if it comes to that. And I feel trapped.

If I need to leave the country, I have few options. Some countries might take me as an asylum-seeker if it comes to that. Since I can’t work full time, few countries would accept me under other circumstances. I could go to Israel, but the politics isn’t so great there and it’s a very country to live in. And I need to consider that I live alone. While friends talk about leaving with spouses and kids, I’d be alone. I need help to deal with my health issues. And what about access doctors and medicine?

Then I think about those same issues here at home. The Republican administration is making very clear threats against Social Security, Medicare, and Medicaid. If you’re not in the U.S., then simply put, Social Security provides payments to the elderly and disabled. Medicare is federal health insurance for the elderly and disabled while Medicaid is state health insurance for the poor. (It’s more complicated that this, but you get the idea.) I’m very fortunate. I could manage for a while without Social Security payments. But without Medicare and Medicaid, I’m screwed.

There are ripple effects, too. My physical therapist does something that no one else in the area does anymore. I’m already wondering what I’ll do when she retires, since she’s nearing that age. If Medicare disappears, most of her patients won’t be able to pay her, and she’ll need to close down her practice. How many other medical practices will be decimated?

Then I think about my many medications. Some help me function better. Some keep me alive. What happens if there are supply chain issues? Even if different versions are available, I may not be able to take them. Right now I have to compound all of my medications because they either aren’t available in a non-compounded form, or because the “regular” versions contain gluten and/or corn, both of which I must avoid completely. I already pay out of pocket for all of my medications. I guess if you want to find a silver lining, then losing Medicare and Medicaid wouldn’t change that, and I’ve already budgeted for it…. but that’s really grasping for a bright side. And of course, again, that’s only if the medications I need are still available.

Every time I make a medical appointment now, I wonder if I’ll be able to keep it, or if my insurance coverage will be gone by then. I can’t stockpile medications, but I would if I could. I can’t front load medical appointments. Insurance only covers them every so often (for example, I can’t see the eye doctor before August if I want it to be covered) and of course, I can’t predict when new issues will arise. Maybe later this year I’ll have an accident, develop a new symptom, or need to change a medication’s dosage. Who knows?

So, like every one, the best I can do right now is make sure my passport is up-to-date (thankfully it is!) and take it day by day. I’ll prepare where I can, while knowing it won’t make much difference in the long run.

But I’ll do one more thing: protect my mental health the best that I can. I talk to friends and family about all of this when they bring it up, but I don’t bring it up. And I try to keep those conversations short. I already had a timer on my phone’s news app. I used to have that because I spent too much time on it and it was a distraction. The other day I reduced the time limit even more because I realized that even 25 minutes was too much news. It was all repeating, and nothing about it was good. I needed a break. (If you want to do the same for your news aggregator or any other app, you can do it on Android and iPhone. There are also various browser extensions to limit your time on various websites, but you’ll have to look those up yourself.) I’m playing with my pup, enjoying hobbies, and trying to spend non-political time with friends. Distraction and compartmentalization are so key.

I think it’s important to stay informed. I’m actually a bit wary of anyone who isn’t paying any attention to what’s happening. But living in the thick of it all the time isn’t healthy either, especially for someone who deals with anxiety. I’d like to volunteer with a group that’s doing something about this, but I don’t feel up to it right now, and I need to prioritize my own well-being at the moment. Have a year and a half of extra-bad fatigue, I’m slowly starting to feel better. I’ve joined a monthly book group and a weekly knitting & crochet group. But I still don’t feel that I have the energy to date, and while I have a goal of walking every day without the dog (because he’s very slow and sometimes refuses to leave the area around our building), I’ve only managed to do that a couple of times so far this year. I’m improving, but I still have a long way to go. Volunteering would be great – I’d feel like I was actually doing something useful – but it’s beyond me right now, and I’m trying to be ok with that.

Obviously this is all just the tip of the iceberg. I’m not writing today about the inevitable rise in grocery prices, what happens when nonprofits serving disabled folks are shut down, or the myriad other issues we’re facing. After all, there’s only so much any of us can think about in a given day.

What about you? Are you feeling affected already? Are you worried about how you’ll be affected in the future? How are you handling it all? I wish you all the best, and hope you’re managing as well as possible!


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.


Terrified that I won’t find a new doctor

March 17, 2023

I’ve written about this before, but then, that’s part of chronic illness, isn’t it? So many things recur because, after all, our health problems are chronic. Still, this is by far the biggest problem in my life at the moment, so it’s what I’m going to write about today.

The back story starts years ago, when I did my own research to learn why my thyroid treatment wasn’t working. It took a while to find a doctor who really knew how to treat me in a way that would actually improve my symptoms. When I finally found that doctor, I stuck with him.

Meanwhile, I was treating my adrenal insufficiency with supplements. I did my own research and worked with my naturopath. At first they helped, but then the company I used went out of business. I had to switch to a different brand and it was never as effective. After 7 years of supplements, my naturopath finally convinced me to do what my doctor had already been encouraging: hydrocortisone. I had resisted this course of action for a long time, but I finally gave in.

With the right thyroid treatment and the right adrenal treatment, I felt better than I had in years. It felt miraculous. For a short time, that is.

Fast forward to a year and a half ago, when my doctor urged me to go off the hydrocortisone for six weeks in order to run some tests. It was hell. In theory, after the tests I should have gone back on the same dose and felt fine again. For some reason, though, that didn’t work. We raised the dose. And then my doctor retired.

I found a new doctor, and I thought he might be ok, but at our last visit I changed my mind. First he said I’m hyperthyroid based on just the TSH, without considering the Free T4. Also, he doesn’t even run a Free T3! But even worse, when I described some adrenal hormone-related issues I have, he said they’re signs of being hyperthyroid. Which makes no sense. I’ve had these episodes for years, even when I was hypothyroid. Even though I only get these episodes once every week or two at most. Even though they stopped when I got on the right dose of hydrocortisone. They recently returned, which is why I’ve questioned whether I need to change my dose. But he insists they’re proof that I’m hyperthyroid. What?!?

Ok, so maybe I need a new doctor. But I could have lived with that. Then he announced changes to his medical practice that would end up costing me thousands of dollars a year. Literally. And I’m already not happy with him. So now I feel that I need someone else. But…. what if I can’t find anyone else?

I’ve been looking. So far, I’m not finding a lot of options, and the ones I do find don’t take my insurance. I don’t even know yet if they are taking on new patients. Or if they have the knowledge necessary for my kind of complicated case. Or if I’d like them.

My PCP won’t prescribe hydrocortisone at all, and her way of managing thyroid conditions would send me back to where I was at more than a dozen years ago. I’m terrified. It took so many years for me to get to a level of health where I felt that I could more or less function, and I worry that could be snatched away from me. Not only do I need these medications to live, I need them to enjoy life. Even with these meds I can’t do a lot of things I want to do: go dancing, hike, spend all day doing fun activities, keep up with my nieces and nephews, keep up with my own 70-something mother, attend a wedding without needing days afterwards to rest. Still, they allow me to do a lot more than I otherwise could. And I could lose them.

I’m terrified. There simply aren’t many doctors around, regardless of insurance coverage, who do the types of treatment I need. What happened? I feel like there were more options a dozen years ago, but the numbers have been shrinking and patients are left in the lurch.

I don’t know what to do. Every time I think about calling more pharmacies to ask for names of doctors, checking more doctors’ websites, calling more medical offices, I freeze up. Avoiding the issue won’t fix it, and only causes the entire situation to weigh on me and add to my stress levels – and added stress is especially bad for someone with adrenal issues that aren’t being properly treated!

Right now I’m going to take a few deep breaths and make some more calls. It only takes one, right? Just that one special doctor. Still, I’m scared. Because I know it’s possible I won’t find them. And then what?


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?