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?

6 Comments | Fatigue, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

I’m ok but not really

July 15, 2022

Maybe it’s my imagination, but lately it seems that people are asking, “How are you?” more than usual. I’ve hated this question for decades. I feel stuck when people ask: do they really want to know? If so, how much should I share? This issue isn’t new to anyone with chronic illness. I’ve written about it before, as have a lot of other folks. But these days, I’m dealing with something else: normalizing my own not-okay-ness.

Let’s start with my real answer to “How are you?”, what I’d say if I were being honest with them and with myself, and then I’ll break things down.

I’m fine. Ok, I’m not really fine, but I’m fine enough, you know? I’m getting by. I’m surviving day-to-day and it’s good enough. I mean, sure, it’s not really good enough, but it’s as good enough as it can be right now, you know? It’s doable. I’m overwhelmed. I’m exhausted. I’m doing an elimination diet that is stressful and overwhelming. I’ve going to in-person occupational therapy twice a week which is a lot logistically, and that’s before you account for doing the exercises at home every day. It’s supposed to be twice a day but I. Just. Can’t. I’m still trying to do my physical therapy every day. I’m exhausted, did I mention that? I haven’t slept well these last few… days? weeks? And I’ve been having nightmares since the pandemic began, too. I’m anemic and my thyroid levels are off. Those two are probably related. I’ve waited months and I’m finally getting an iron infusion next week, since supplements don’t work (no, I don’t know why I can’t seem to absorb certain nutrients) and I’ve had bad experiences with the infusions in the past so I’m really nervous. The last two times I brought someone with me but with the pandemic, I can’t do that this time. I wish I could bring a dog to cuddle. Anyway, I’ll be glad to get that over-with, but it can take weeks, or even months, to feel the effects. Oh, and I got my period this week so I was extra emotional and I lost a lot of blood. I had to spend time washing blood out of clothes and going to the bathroom every hour or two to deal with it. I’m sure that’s not helping with the anemia, either. Did I mention the new pain I’m having? And the two new diagnoses I got this week? I might have forgotten that. And it’s summer and while for some reason I hoped it would be different this time, it’s not. The heat and humidity bring additional pain, and it sucks. And Covid cases are soaring and people still aren’t wearing masks which is so damn disrespectful. Plus several friends have told me big secrets recently and I really want to talk those things through with someone but I can’t because they’re not my secrets and eventually it’ll all come out but it could be a long time and meanwhile I keep worry about these people that I love so much. All I want to do is sit on my couch and read a good book, watch movies, and crochet. But I can’t. I have to do my occupational therapy and physical therapy and prepare meals and go to appointments and do housework and try to do at least a little bit of volunteer and paid work. But you know, I’m fine. Because I feel like I have to be. I’m getting by, one day at a time, and that’s enough, right?

That’s what I want to say. But I never do. Some people hear bits and pieces. I’ll tell a friend that my heavy period is probably making my anemia worse and is probably why I’m extra fatigued this week. Several folks know about the stress around the elimination diet. A few know about this and others know about that and some don’t know anything because I just don’t even want to deal with answering a bunch of follow-up questions. And through it all, when a good friend who also has chronic illness asked this week how I was doing, my answer was still to say that I was fine. Sure, this was partly because I just didn’t want to talk about all of the crap I’m dealing with. It was partly because I didn’t want to bother her with everything. But it was also partly because I truly believed for a moment that I was fine, or at least fine enough.

Even I can tell that I’m really not fine. Come on, look at that answer above. That is not a “fine” answer. But I’m continuing to live my life, and it’s giving me the illusion that I’m ok. I’m so tired that I’m not processing my feelings, I’m just pushing them aside. It’s the exact opposite of what I’ve been learning in therapy but at the same time, even my therapist agrees that sometimes I need to compartmentalize. Sometimes it’s helpful for self-preservation.

And maybe that’s what believing I’m “fine” is all about right now: self-preservation. Because if I think too much about the many ways that I am so obviously not at all “fine” then I may loose my shit. And frankly, I’m too tired to have the really good crying session that I probably need right now.

I think that sometimes we need to give ourselves the illusion that we’re doing okay as a way of surviving it all. I feel like it’s ok to do this, as long as it doesn’t last too long, and as long as I recognize what it is that I’m doing. At first I really believed I was ok. Now I see it for the facade it always was, but I’m still using it, holding up the shield of fine-ness while knowing the shield is fake. Eventually everything will break through (probably at my therapy session next week, the first in several weeks due to my therapist’s vacation) and then I can hopefully go back to seeing the truth. But until then, I’ll keep hiding behind my fake shield, because at least it’s helping me to get through each day.

Does anyone else do this? Do you ever truly believe you’re fine, even for a minute, when it’s obvious that you’re really not? Does it help? I’m curious to hear others’ perspectives and experiences.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants | Permalink
Posted by chronicrants

Taking a chance and hoping it works

June 17, 2021

I’m exhausted. I’m so tired that I just want to fall asleep right now, sitting in my chair. That’s not like me. Sure, I have chronic fatigue, but the exhaustion usually causes me to feel unable to do things, but not to feel sleepy quite like this. This week is different, though. And the reason is my new temporary 4-legged roommate.

If you’re been reading this blog for a while, you know that I want a dog. I have wanted a dog my entire adult life. First I worked and travelled too much, and then I was too sick. Recently, though, my health has improved and stabilized. It’s not great, and I know that a lot of the stability comes from being home during the pandemic. Without spending energy on seeing friends, going to events, running errands, or seeing most doctors in person, I had less fatigue, less pain, and generally better health. Was it great? No, of course not. But it was better. It allowed me to think, not for the first time, about getting a dog.

I’ll skip the details, but basically I have a temporary canine friend here for a while. It will probably be for a month or two, but could be a bit less or a bit more. I’ve done dog sitting before, but this is different. Harder.

For starters, with most dog sitting there’s a known end date, and my dog sitting has never been for more than two weeks. This time there isn’t an end date, and it will definitely be more than two weeks. Also, the dog is usually well trained and this guy isn’t. He’s somewhat trained, which is great (no accidents!) but not entirely. I have had to take him for more walks than with other dogs. I have to watch him carefully to make sure he doesn’t get into things that he shouldn’t (he tried to chew the edge of my carpet.) He’s just over a year and has puppy energy. He naps, but then wants to take a long walk and play.

Thankfully, he sleeps through the night, because I’m not sure how well I’d be functioning if he didn’t. And it’s in the 70s and not humid, which is the best weather I could hope for at this time of year. Still, I’m worn down. Yesterday, during our 86th walk (ok, maybe only the fifth of the day, but it felt like more!), I began asking myself what each of my doctors would say about my current state. My guesses:

  • Therapist: Keep at it, you can do this. But be sure to rest and don’t overstress your adrenals.
  • Rheumatologist: Are you resting enough? Do the best you can, and we’ll see how you do, then talk about it as things progress.
  • Naturopath: I think you’re doing too much. You need to slow down.

Of course, I could be way off. Maybe they’d each say something completely different. Not that it matters, because I’m going to keep at it. I know things will get easier as we get to know each other, form routines, and settle into patterns. And it’s short term. I’m not going to have him for the next ten years, only for a matter of weeks or months. And he’s so cute! I have to admit that when I’m exhausted and then look at that adorable face and pet that soft fur, it does help me to feel better. But then I remember that I need to wash the dishes, and I’m just so tired. I’ve even been eating less the last couple of days because I’m just too tired to eat and digest, and to get up for more food.

I knew the first days and weeks would be the hardest. I’m hoping that he’s with me for long enough that I get to discover if things will get easier. Maybe they will, and I’ll learn that I really can manage having a dog. I hope. Because if not, then I’m going to have a hard time recovering from this, both physically (omg, I’m so exhausted) and emotionally, because I would need to give up on the hope of getting a dog, at least for a while. Only time will tell. I’m really hoping this works. But either way, at least I’m trying. And I feel good about that.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

If only

February 8, 2021

Regrets over how my health was handled in the past aren’t new, but my sudden memory of some particular past conversations with one of my doctors still hit me hard recently.

So many times I’ve thought, if only I’d been diagnosed with Celiac disease as a child. If only my doctors had taken me seriously. If only it hadn’t taken more than a decade of symptoms to realize I had autoimmune disease. If only I had known that frequent diarrhea and cramps weren’t normal. If only my adrenal fatigue had been caught earlier.

Then there are the more specific instances. If only when I asked my doctor to test me for lactose intolerance, he hadn’t lied and said there was no such test. If only I’d realized then that I need to find someone new. If only I hadn’t been stuck in crappy HMOs and had had more options when it came to choosing doctors. If only the gastroenterologist I finally visited hadn’t labeled me with IBS and then written me off. If only the doctor I went to with complaints of fatigue didn’t tell me to “give it more time” even a year after it began.

But then a few weeks ago I suddenly remembered something. It started simply enough: I was curious to know if my hydrocortisone, which I started in 2019 for adrenal fatigue, was putting me at higher risk for severe Covid. I looked up the prednisone dose that’s considered risky, then found an online conversion to hydrocortisone. Both are steroids, and HC is basically a very low dose of prednisone, which I’d been on many times in the past. When I was on prednisone in the past, it was always to treat pain, but I was thrilled with the extra energy it gave me as a bonus – I felt so much better! Of course, I didn’t like the other side effects so much. It messed with my memory, made me very emotional, gave me severe brain fog, caused me to gain a lot of weight, and more. But the energy was fantastic!

I realized eventually that the energy boost had been a clue. I’m sure many people have extra energy on prednisone, but I had a huge boost when I took even tiny doses. Even 2.5 mg helped and 5mg felt great. My fatigue had begun after a virus in 1999 and never got better, but it was mild for many years. The first time I had the extra prednisone energy was in 2006. It wasn’t until 2011 that I became too disabled to continue working. My guess is that I would have left work a year earlier if I hadn’t been on prednisone for many months prior. It wasn’t until 2013 that I learned I had adrenal fatigue. These dates are about to become very relevant to the story.

I can’t count the number of times I wished the adrenal fatigue had been caught earlier. It’s by far my most disabling symptom. It’s the symptom that is stopping me from working, the one that’s stopping me from getting a dog. When my naturopath diagnosed my adrenal fatigue in 2013, she started me on supplements that helped a lot. But then that company went out of business. We tried a different supplement and it helped, but it never worked as well as the first one. I struggled for years, and just couldn’t quite increase my energy the way I needed to. Feeling “better” felt just a little bit out of reach – far enough that I longed for it, but close enough that I kept trying.

Eventually I switched to a new primary care doctor, a functional medicine practitioner, and he acknowledged my adrenal fatigue. My previous PCP hadn’t. He immediately recommended hydrocortisone, but I didn’t want to be on steroids at all, and definitely not for the rest of my life, which was a very real possibility. So I continued to struggle. Eventually, my naturopath also thought that HC was necessary but still, I resisted. I continued to adjust my diet, change my exercise, alter my supplements. I tried so hard. And finally I had to admit the truth: it wasn’t working.

In August 2019 I started HC, compounded for me at a pharmacy that makes it gluten-free and corn-free, something that wouldn’t be available through the local pharmacies. The difference was noticeable. I felt a lot better. I also gained a lot of weight and my hair started to fall out. It took a while to adjust the dose, but finally, it seems to be right. My energy isn’t what I want it to be, but it’s a lot more stable. I still can’t work. I still can’t care for a dog. But I can generally function better, and I’m no longer having the “episodes” that I previously had when my adrenals became too stressed. I lost most of the weight I had gained and my hair stopped falling out (aside from what’s normal, of course.) So it seems that where I’m at now is about the best I can achieve, at least for now, even though it’s not nearly what I want it to be. And that brings us back to now. If only I’d tried HC sooner, before so much damage had been done to my body.

I looked at the calculator’s output on the computer screen. My HC translated to a very low dose of prednisone. Low dose of prednisone. That was familiar. And then I remembered a doctor from all of those years ago. The one I never saw for adrenal fatigue, the one I saw before I even knew what adrenal fatigue was, the one who first tested me for adrenal fatigue nonetheless. I saw him for many years. First he treated my PCOS (polycystic ovary syndrome) and then my hypothyroidism. He diagnosed me with Hashimoto’s disease, which for some reason my previous doctor hadn’t diagnosed. As my fatigue persisted, he tested me for adrenal fatigue, but he only did blood tests, which did not show it. If only he had done the saliva tests, which are more accurate. Still, he didn’t blow off my symptoms, even while he wasn’t sure what to do. When I came off of prednisone at one point and complained of the renewed fatigue, he suggested that maybe I should continue taking a very low dose permanently. He said that even 2.5mg or 5mg daily could make a huge difference. I would be on it for the rest of my life.

I scoffed. Daily steroids? For the rest of my life? No way! I wouldn’t even consider it, and I privately questioned his judgment. I saw this doctor for about 12 years, so it’s hard to remember exactly when this was, but it was before I’d ever been diagnosed with adrenal fatigue, probably between 2008 and 2011. He’d run the test, and even though it came back negative, he must have suspected the truth. He offered me a treatment that I turned down but that, in hindsight could have helped so much. If only I’d listened.

The truth, of course, is that I can’t be sure. Maybe taking prednisone back then, before I had gotten so much worse, could have caused other problems. Maybe the short term side effects would have caused me to give up. Besides, I had real reasons to reject it. My short term side effects were bad, but I was even more worried about the long term side effects: brittle bones, cancer, vision problems, and more were quite possible. He had said the odds of those side effects were lower with such a low dose, but since I was only in my 30s, I would have been taking it for decades. That’s a long time to take a medication with such severe potential side effects. I had been misled, ignored, dismissed, and misdiagnosed by so many doctors, that I had good reasons to not automatically try whatever they suggested.

I had very good reasons for turning down the suggestion, so I am trying to remind myself that I made the best choice I could with the information I had at the time. And there’s no way to know what the outcome would have been even if I’d tried it. But still, sometimes it creeps back in: if only….

I looked at the computer screen. My dose of HC came out to 4.38mg prednisone. The doctor had suggested 2.5 mg or 5mg. He’d been right. Crap. If only I’d listened. If only I’d tried it.

If only I could learn to let go of the if onlys.

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

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