Finding my muse

May 30, 2022

After 11 years of writing this blog regularly, I was surprised recently to discover that I didn’t write anything last month at all. I figured I would make up for it this month, but somehow time has passed and the month is nearly over. It’s not like I didn’t have anything to say about chronic illness. I always have something to say about chronic illness. But sometimes putting it all into words isn’t easy.

This blog has given me a lot. It has provided catharsis has helped more than I expected. It’s been a source of great advice from wonderful readers. It has been a wonderful way to connect with others who have chronic illnesses. It’s also been a diary of my journey. I started writing this blog just a few months before I had to leave my job. I wrote about health insurance issues, applying for disability benefits, and more. When my memory is fuzzy and I’m not sure when or how things happened, I can look back to this blog. Several people have asked me to write a memoir and if I do that, this public diary of sorts will be incredibly helpful. This blog has also given me the confidence to not immediately dismiss the idea of writing a memoir. For some reason, you all have been following my journey and want to read more, so maybe it would be helpful for others also.

Meanwhile, I slowed down writing this blog when I was working on a different chronic illness-related project and I needed to reign things in. But then the other project ended and I suppose I felt burnt out, so my writing remained slow. Still, I’ve had chronic illness on my mind. As always.

I’m looking at the next few weeks and wondering how I’ll fit everything in: a mammogram, an eye appointment (I get seen more often than I otherwise should due to risk factors from medications I’ve taken), therapy, physical therapy, occupational therapy, dietician, job-type stuff, social stuff…. it’s a lot. That’s on top of keeping a food journal all day every day and putting a lot of effort into figuring out what to eat and when, thanks to my current temporary elimination diet. Meanwhile, for the past two months I’ve been applying for rescue dogs (yay!) It’s hard, constantly being told that a dog isn’t local or that there’s already a long line for them. Now there’s an excellent dog who I may be able to adopt. I haven’t met him yet and it might not work out, but just the idea of possibly taking in a dog next week has me on edge. How on earth would I balance those early, more difficult weeks of having a new dog with all of these appointments? And yet, how could I not adopt him if I think he’s a good match?

Meanwhile, I’m sitting at my desk, very aware of the pain in my hands (hence the upcoming OT), the worsening pain in my toes (that I’ve had for 20 years and that no one has been able to explain), and the sweat drying on my body because I took a walk on what everyone else calls a pleasant day and I call way too hot. I want to take a cold shower but also dislike cold showers. I want to continue listening to my excellent audiobook, but also feel gross and want to clean up. I want to finish writing and editing this post, but should get up to take medication. I want to rest, but know that I need to eat lunch soon to stay on schedule and not mess up the timing of my afternoon medications. Even moment-to-moment, chronic illness can be hard to forget. (Typing this, I realized that I really did need to get up and take my medication, so I did. I was surprised how much worse the pain in my toes has gotten in the hour that I’ve been sitting down. Ouch! I’ll be doing lots of sitting today!)

Today is a holiday in the U.S. and it’s quiet in my neighborhood. Few people have walked by, which is unusual. Neighbors are travelling for the long weekend. I have no place to go, and no one to go with. But I want to travel. I miss travel. Will I ever feel save travelling again? Will they ever figure out how to prevent and/or treat long Covid? Because that is what’s stopping me from travelling right now. I’m not worried about Covid killing me as much as I’m worried about getting long Covid. I definitely don’t need additional chronic health problems!

And yet, aside from travel, I’m still not sure what’s safe. June is Pride month, and there are so many events I want to attend. Many are hard to get to without public transportation (definitely something I want to avoid during the pandemic), but I thought I might attempt a few that I could reach by car. And then I heard reports of people getting Covid from outdoor gatherings, and now I’m not sure that’s safe. I haven’t attended any Pride celebrations in 3 years, and I miss it so much. Pride is a big deal for the LGBTQ+ community, and I want to be around my people. But is it safe?

These are just the thoughts I’ve had this morning. Like I said, my lack of writing isn’t due to a lack of thoughts about my life with chronic illness. And frankly, this is just the tip of the iceberg. There’s so much more I’ve been thinking about, too. But writing takes time and emotional energy, and sometimes I don’t have that. Sometimes I have the time and energy but the muse isn’t with me. Some of my posts over the years haven’t been well organized. Some are filled with typos. But even the error-filled posts – hell, especially those posts – have been the result of a flow of ideas that is hard to stop. When I’m not in the zone, though, I generally don’t like what I write, or more likely I never even begin. I guess the muse simply hasn’t been visiting me the last few months, but that’s ok. This is post #794, so I guess after nearly 800 posts, I deserved a bit of a break. I’m still around, though, so you’ll be hearing from me again.

Until then, I hope that you all are doing as well as possible, and that you’re giving yourselves breaks when you need them. After all, we all deserve to take breaks.

I’d love to hear from you: should I write a memoir? And if so, why would you want to read it? What would you want to get from it? And on the topic of giving ourselves breaks, what’s one nice thing you’ll do for yourself today? Personally, I’m going to spend extra time listening to my audiobook because while I know how it will end (of course the couple will end up together) I’m still excited to hear how it happens.


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.


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.


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