Not every specialist can handle every problem

March 25, 2022

Me: “Do any of your practitioners specialize in PCOS?”
Receptionist: “Any of our ob/gyns can work with that.”
Me: “Ok, but do any of them specialize in it?”
Receptionist: “No, but they’ve all seen patients with PCOS.”

I had this conversation earlier this week, but I can’t even count how many times I’ve had versions of this same interaction. Why do offices just not understand that “we’ve worked with patients with X condition” is not at all the same as specializing in it? This would be like asking, “Do you specialize in brain injuries?” and being told, “Yes, we have patients with brains.” No, not the same thing.

I am so frustrated right now. Two of my main practitioners have recently left. One retired and the other left suddenly due to a family emergency. Between the two of them, they treated my thyroid issues, my adrenal issues, and my PCOS. They treated all of my most active conditions except for the sleep apnea. And now they are both gone. They worked in the same practice, a practice that is no longer as big and robust as it once was.

When I first began there 7 or 8 years ago, there were many practitioners to choose from. I went there because of the doctor who was recommended to me by several people for his thyroid disease treatments. He referred me to the other for my PCOS issues. But now there are few practitioners remaining, the ones who are there just don’t have the approach that I need. What made this practice so special is that they focused on integrative medicine. Integrative medicine combines conventional medicine and complementary medicine. For example, look at my adrenal issues. Conventional medicine says that I don’t need any treatment. Without treatment, I can barely function. Conventional medicine says that I should treat the problem with dietary and lifestyle changes, plus supplements. I tried this approach for years and had some improvement, but not enough, and was really struggling. With an integrative medicine approach, I’m taking medication that has given me back my life. Do I have the energy and health of others my age? No, I do not. But I’m doing a hell of a lot better than I had been without the medication!

Unfortunately, I keep running into roadblocks. There are fewer and fewer integrative medicine doctors around my area who take my health insurance. Many take insurance, but only private insurance. I’m on Medicare (federal health insurance) and Medicaid (state health insurance that mostly covers the things that Medicare does not.) Many don’t take Medicare and of the ones that do, they don’t take Medicaid. I’ve thought about paying out of pocket, but that would get very expensive, and I don’t know if I should attempt that. This week someone suggested that it might be worth it for me to pay for a private secondary insurance, but the enrollment period ends next week and I’m trying to research my options, but I haven’t made much progress.

I know the local hospitals will take my insurance, but they usually stick with conventional medicine and that just won’t work for me. But you never know, right? So fine, I set up an appointment at the office I mentioned at the start. Then I Googled the person I was supposed to see. I found her online easily enough.

Her specialties: cardiovascular issues and high-risk obstetrics.

My need: I haven’t gotten my period in quite a while and need someone to order an ultrasound to check my uterine lining. If it’s too thick, then we need to figure out how to induce my period without messing up any of my other hormones.

Any doctor can (and hopefully would!) order the ultrasound, but how would they induce my period? In my experience, they would prescribe birth control pills. That has disaster written all over it. I need someone with a lot of experience in this area. Is it possible the person whose specialties are cardiovascular issues and high-risk obstetrics can help me? Sure. But is it likely? I highly doubt it.

I cancelled the appointment and will go back to making phone calls. Finding a practitioner to treat my PCOS isn’t nearly as urgent as finding one to treat my thyroid and adrenal issues, but it should be easier, and I’m hoping that whoever I find for one issue my recommend practitioners to treat the others. I just hope they take my insurance.

Note: I am writing about this fairly calmly, but in truth I’m very upset. I have spent a lot of time stressing, crying, researching, and crying some more. I’m terrified that I won’t be able to find anyway. It feels as those my options have shrunk a lot in recent years, and I’m worried about that trend continuing. Maybe another day I’ll write about the emotional side of all of this. For now, I just wanted to discuss that it’s happening in general.


The problem with the “don’t make events about food” advice

February 22, 2022

Maybe you have celiac disease or another food restriction like me, or maybe you have another limitation that causes issues for you at social gatherings. If so, you’ll relate to this. And if that’s not you, this may put things in a slightly different perspective for you.

I grew up in a family that made a big deal out of food. Holidays, were always about food. I get it, that’s how Jewish holidays are. Challah, hamentaschen, wine, matzo ball soup, latkes, and kugels were all staples. Thanksgiving had turkey, pies, potatoes, and kugels. When we visited family out of state or they visited us, it was all about the food. We thought about it, talked about it, spent lots of time preparing it, and of course, enjoyed eating it. As I grew up, I often felt sick after (or during) these events, but I often felt sick after (or during) a normal meal anyway, so it’s not like these were any better or worse. It wasn’t until my 30s that I stopped eating gluten.

Image credit Heartland Mom on Pixabay

I have often wondered how my grandmother would have handled things if she’d still been alive when I went gluten-free. She was the stereotypical Jewish grandmother, always cooking and baking, expressing her love through food. We would arrive at her house after a several hours long drive, having stopped for lunch on the way. She would ask if we wanted food when we arrived and we’d say no, we’d already eaten, so she would put out a “snack”. It was a large snack! Then a few hours later dinner would consist of chicken, brisket, at least 2 kugels, challah, salad, and more, along with multiple desserts – for only 6 people! I’d like to think she’d have found a way to adapt her meals for me, but I know she wouldn’t have stopped focusing on them.

The surprising (at first) thing with eliminating gluten is that it doesn’t only effect what we eat, it effects our social lives. Dates are tricky when I can only eat at certain restaurants. Going out with friends is tough when we can’t spontaneously grab food while we’re out. Attending weddings, bar mitzvahs, and other events is frustrating when I can’t eat the food provided. Multiple surveys have shown that the social aspects are the hardest part of living with celiac disease. So the advice that we hear over and over is logical: don’t make events about food, make them about people. And after all, shouldn’t we all be doing that anyway?

I get it. If the focus at Thanksgiving is the people instead of the table of food, then the people who can’t eat all of the food, and who might be nervous about the food, can still have a great time. If the Passover sedar is about the people and the prayers and we let the matzo ball soup and brisket be secondary (or even tertiary) incidentals, anyone with food restrictions will have a better time. It makes sense.

People > Food.

It took me many years to figure out why that advice felt off to me.

I remember a family vacation. We were in a big rented house, and I had been careful to cook food in advance. It was annoying to have to do this, and definitely took away from some of the fun, but it was fine. There was one night when everyone wanted to eat at a fancy restaurant. The family had been to this city many times over many years and loved this place. I’d only been once and, frankly, I hadn’t thought it was so wonderful, but whatever, I’d have been willing to go back. The thing is, they didn’t have anything gluten-free. My choices were to go there and not eat, or not go. I chose to not go. I found another restaurant in town that had gluten-free food and my mom chose to join me. My mom and I had a fantastic time, actually. We walked around town and had one of the best meals we’d ever had together. The food was amazing, the ambience gorgeous, the company perfect. My dad, aunt, uncle, cousins, and cousin’s wife all went to the other restaurant, and I won’t pretend I wasn’t hurt. I understand they liked this place and wanted to go, but it hurt me that they didn’t place my feelings and their desire to be with me above their desire to eat at a specific restaurant. They talked about it a lot in advance and a lot afterwards, too.

Holidays and family gatherings have been different since I went gluten-free. When my mother hosts, she makes sure the meal is either completely or mostly gluten-free, with any gluten foods kept separate and reminders to all to keep their serving spoons away from other foods. Accommodations vary when others host. But either way, it’s still about the food, and food is still stressful. Even when the meal is 100% gluten free, I no longer get any joy from focusing on food. It’s simply associated too much with negative things for me. Plus, the talk about the food isn’t limited to the food on the table, and that’s even more stressful. I am immensely grateful that my mother goes out of her way to make me feel comfortable eating the food at her events, but I still wish we could focus less on the food altogether.

As for me hosting a family event, that’s not likely to happen. For one thing, my apartment is small and I don’t have a lot of space. But for another, I have no desire to host. Some people love to cook, decorate, and have lots of people over for a party. That’s not me, and it never has been. Plus, even if I wanted to do that, I don’t have the energy for it. I can cook a meal OR attend a gathering, but I certainly can’t do both, never mind hosting duties. When I go to someone else’s home and bring food with me, it’s always something that can be prepared a day or two in advance because doing it the same day is too exhausting for me.

But let’s be realistic. Even if I could find a way to host, there would still be the issue that the gathering would be all about the food because I might be able to change the circumstances, but I can’t change the people. As soon as they walked in they would ask what we were eating, and the conversation would often turn back to food throughout the gathering. If I made all of the food then I wouldn’t be worried about that food in particular, but I still don’t like these conversations. Inevitably people talk about other foods and about restaurants, and at best none of this is enjoyable to me, at worst it upsets me, triggering all sorts of past trauma.

I don’t have a solution. This is something I’m continuing to work on for the sake of my own mental health. I can talk to my family about it and maybe they will occasionally make an effort, at least some of them would, but I know that most would not even try, or they would soon forget. This is ingrained and it’s something they enjoy. I just wish the thing they enjoy so much wasn’t the thing that brings me the most grief.


Why vaccinated folks should care about others not being vaccinated

December 8, 2021

In the days of COVID-19 (from now on I’ll just write this as “Covid”), this feels super-relevant, but let’s be honest, this was relevant before, too, as we’d been seeing recent measles outbreaks here in the U.S. The anti-vaccine movement has hurt a lot of people. Still, I’ve recently heard people ask, “if you’re vaccinated, why do you care what anyone else does?” This question never seems to come from people who can’t get vaccinated for medical reasons, but from those who choose not to. There are so many reasons! I wanted to mention just a few that came to mind.

Just to be clear, I’m not going to debate the value or safety of vaccines. I’m pro-vaccine. If you have a problem with that, you’re welcome to skip this post. Or even better, to read it with an open mind and reconsider your stance.

I jotted down these notes a few months ago, but didn’t feel up to writing it all out until now. I wrote the notes before Omicron. Today, in December 2021, Omicron seems to be a huge threat, but we aren’t quite certain yet just how bad it will or won’t be. Anyway, without further ado, a few reasons why I care if others are vaccinated for Covid, and you should, too:

  • Young children are not eligible for the vaccine and are at risk of both getting and spreading Covid. Other people getting vaccinated will protect these kids.
  • There are people with medical issues that prevent them from being vaccinated. They need protection, too.
  • Ditto for folks who get vaccinated, but for whom it doesn’t work properly.
  • Emergency healthcare workers need a break. For some reason, a lot of people don’t “trust” medical science to prevent Covid, but still seek hospital treatment after they get Covid. These healthcare workers have been working a lot of hours this past year-and-a-half. Let’s have some compassion for them.
  • When ERs are overrun with unvaccinated people with Covid, a lot of other people aren’t getting the care they need from the usual issues (heart attacks, car accidents, assaults, etc.) Others’ getting vaccinated will free up beds for others.
  • I want this pandemic to end. Vaccines are currently the best way we have of ending this pandemic. I want to hug my family and my friends. I want to buy groceries without fear. I want to get medical treatments. I want to go on a date and be able to kiss the person without asking a million questions about their potential Covid risk. But we need a certain percentage of folks to be vaccinated for this to happen.
  • Even vaccinated folks can get long Covid, and that terrifies me. Long Covid can potentially lead to chronic illnesses and I really don’t want more of those.
  • Vaccinated folks can get very ill and even die from Covid. Yes, it’s less likely, but it can still happen. Combined with the potential for Long Covid, I don’t think anyone can say that vaccinated folks aren’t at risk.
  • We still don’t know the full long-term impacts of this disease. There’s been talk about impacts on the brain’s gray matter, among other things. I don’t particular want to risk that, do you?
  • I recently had a medical test cancelled because the office is short-staffed due to certain staff members choosing to quit rather than get vaccinated. As I told the person who called me, I’d rather have the appointment cancelled than be in that small room for half an hour with someone who isn’t vaccinated. But of course, let’s be honest, I’d rather more people get vaccinated so I could keep all of my medical appointments.
  • If more people get vaccinated, we should see fewer new variants. Yes, I wrote this note before Omicron. We all knew it was only a matter of time before we saw more variants. The only question was how dangerous they would be. And make no mistake, if people don’t get vaccinated and take precautions (wearing masks, distancing from others) then we will continue to see more.
  • You’re basically giving the middle finger to the thousands (millions?) of people who want to get vaccinated but don’t have access to it. You have the choice. They don’t. Do the right thing. Help others. Because for so many of the reasons above, and many more not mentioned, you getting vaccinated will benefit them and others.

Look, I’m no doctor. I’m not a scientist. I’m not a specialist of any sort. But I have common sense, I read, and I reason. And I can see very clearly that when someone says “if you’re vaccinated then why do you care if anyone else is vaccinated?” they are saying two things.

(1) They don’t care about others. They are saying that they believe I am as selfish as they are. Which I’m not. Even if the vaccine protected me 100%, I would want to know that those who don’t have the option to get vaccinated (young kids, people with certain medical conditions) would still be safe.

(2) They don’t understand science.

So there’s the little rant that I want to give every time I hear anyone ask this question. I’m guessing at least some of you reading this aren’t able to get vaccinated or have loved ones who aren’t able to, and are relying on others to do so. Let’s hope that somehow, some way, the tide turns and those who have the option to get vaccinated but have resisted will finally do it.


Choosing an arm: a simple decision?

October 16, 2021

“Which arm do you want for your flu shot?” It’s such an easy question, right? Well, not really.

In the car on the way to the pharmacy, I debated. I usually have a sore arm for a bit. (For context, I have chronic pain in many areas of my body, and my right wrist is one of the worst spots.) My left arm is stronger and has less pain, which means I can tolerate it there more, so I should get it in my left arm. Then again, maybe I should get the shot in my weaker arm, so I still have one strong-ish arm. So I should get it in my right arm. The soreness can mess up my sleep for a night or two. I sleep on my left, so I should get the shot in my right arm. But do I really want more pain in my right arm? No I don’t, so I should get it in my left arm. I reach for things with my left (I’m right-handed, but with extra pain that wrist, I have to do more with my left) so I should get it in my right arm. I use my left more when I drive, so I should get it in my right arm. But I want to have at least some function in my right when I drive, so I should get it in my left arm.

I went back and forth for a bit. Finally, I decided: the left. The deciding factor was simple: I can push through the arm soreness in my left to crochet and knit, two of my favorite hobbies which I do to relax. I can not necessarily push through the soreness to do those things if it’s in my right arm. And if I’m feeling lousy, which I have been lately (that’s a story for a different day) then I’ll want to do my yarn crafts more than ever.

These are the kinds of issues that I don’t think “healthy” people deal with. They simply pick an arm, probably their non-dominant one, and move on with their day. But for someone like me, whose non-dominant arm is needed to compensate for the pain and weakness in what is my naturally dominant arm, there’s no easy answer.

If you’re struggling with similar issues, related to your flu shot or anything else, please know that you’re not alone. Sometimes these supposedly-easy decisions are actually very difficult.

P.S. I’m happy to say that the soreness was much milder this year, and only disrupted my sleep for one night.

P.P.S. My brain fog is much worse than usual this week. I hope this post makes sense and that I caught the worst of the typos but, well, it is what it is.


%d bloggers like this: