Losing the best doctor

September 1, 2021

I just had a long talk with my fabulous primary care physician. The talk about my health issues went fine, but when we talked about his upcoming retirement, I cried. I’m pretty certain I have never before cried when I lost a doctor. I have felt upset. I’ve been nervous. I have simply not cared. But this is different.

Not only is Dr. P my PCP, but he prescribes my thyroid and adrenal medications. Both are medications that are rarely prescribed. (Hypothyroidism is commonly treated, but not with this particular medication.) Yes, other doctors do this, but they are few and far between. Plus, many doctors treat one condition or the other, but I need someone who does both, because of the way the two impact each other. And Too many doctors provide these treatments without fully knowing what they’re talking about. But Dr. P knows.

It’s more than that, though. Yes, he’s smart and he’s up-to-date on the research. But he also knows when to pay attention to patient outcomes more than to research. He is smart, caring, and, unlike so many other doctors I have seen, not condescending or patronizing. He does not put his ego first. Today he explained a course of action he wants to take to address some symptoms I have had recently, and he explained WHY. He took time to answer my questions. When I asked why we would do X test and not Y test, he thought about it, admitted that Y could make sense, thought some more, and then said that he’d still prefer X and told me why. I agreed completely, because his reason makes sense.

In order to do the test I need to go off of my adrenal medication, which makes me very nervous. He preempted many of my concerns by saying that he doesn’t want me to feel ill, and that if I have minor symptoms like a, b, and c then I should stick it out until after the test, but if I have worse symptoms like d, e, and f, then he doesn’t want me to feel that bad and I should go back up on the medication and there are other things we can do. He outlined the courses of action we might take if the test is negative (uh oh) and other options if it’s positive (which is what we’re hoping for.) So many doctors would have just ordered the test and sent me out the door, but Dr. P really took the time and effort to address my concerns and make sure I was comfortable.

I have had a lot of medical trauma, and so much of it was avoidable. That time I dropped a knife on my foot was an accident, but so much of it has been doctor-induced (an in fact, the way the doctor treated me in the emergency room and again when he took out my stitches was horrible and trauma-inducing, also.) I find it incredibly hard to trust doctors. For most of my life, I have seen doctors on a regular basis, and so much of that time they were unhelpful at best and harmful at worst. I have been poked and prodded unnecessarily. I have been, essentially, assaulted. (It said in my chart that my wrist could easily be dislocated and then put back in place, and more than one doctor “tested” this, even after I asked them not to, and even though it was incredibly painful.) I have been patronized and condescended to. I have been gaslit more times than I can say.

At first I regarded Dr. P with the same skepticism that I had for all doctors, but over the years, I came to trust him. I haven’t always agreed with him, but the way he listens to my concerns, and even debates me, alleviates a lot of my fears. I ask him to run a test. He says it isn’t necessary. I point to some research. He points to some different research. After a conversation like that I may not get what I want, but I feel heard. This should be something we have in every medical appointment, but it’s all too rare.

I got lucky with Dr. P, but also I didn’t. Lucky wasn’t involved. I worked hard to find him. I had many bad doctors before I found him. I researched. I asked in patient groups. I asked other doctors. Finding Dr. P was no accident or coincidence. Still, I have been grateful to have him as my doctor for several years now.

And he is retiring in a few months. I am absolutely devastated.

If you know any doctors in eastern Massachusetts who treat hypothyroidism with both T4 and T3 medications and who have actual knowledge of adrenal fatigue, please please please give me their name! Of course I’ll do my own research into them, but it would be wonderful to have more people to look at.

Leave a Comment » | Frustration, Healthcare, Rants | Permalink
Posted by chronicrants

Vaccine ableism

March 19, 2021

For weeks, whenever someone asked me when I would be eligible for the Covid-19 vaccine, I told them I would be eligible at the start of Phase 2. They nodded. It made sense. It made sense to me, too. After all, I have a bunch of risk factors. Phase 1 was for medical personnel, and Phase 2 would be for folks with risk factors due to age and/or health conditions, as well as essential workers who weren’t covered in Phase 1 (grocery store worker, utility workers, delivery workers, etc.). Phase 3 was for everyone else. The first part of Phase 2 was for folks who were 65+ or had 2 or more co-morbidities, which I knew I had. But somehow, oddly, I was wrong.

I started to suspect something when I saw the list of conditions that Massachusetts was counting as co-morbidities. At the time, the state’s website simply offered a link to the CDC’s website. The CDC (the Centers for Disease Control and Prevention) offered two lists. The first list was for more serious conditions. I didn’t have anything on that list. The second list was where I fell. I have 5 different conditions/medications that fit into that list. But for some reason, Massachusetts wasn’t using the second list, only the first one.

Then Massachusetts did something mysterious: they added smoking and obesity to the list of eligible conditions. So now people I knew were qualifying because they smoked and were obese but were otherwise totally health. Meanwhile, I wasn’t eligible yet despite having multiple autoimmune conditions and taking an immunosuppressant medication, in addition to other things that were also suspected to be co-morbidities, like central complex sleep apnea. In fact, I wasn’t going to be eligible early at all. Nope, I was getting lumped in with the general population in Phase 3. WTF???

Over and over friends would ask, when are you eligible? Over and over I responded, “I’m not eligible until the general population.” I lost track of the number of times someone said, “I can’t believe I’m eligible before you!” or asked “Why the hell aren’t you eligible before me?” (Spoiler alert: the answer is ableism.) I watched friends with similar health conditions getting vaccinated in other states. I watched friends get vaccinated because they were technically eligible, even though it wasn’t intended for them. For example, one was eligible because she works for a hospital, even though she works in administration, having no contact with patients, and has been working at home all year.

Meanwhile, at my last medical appointment my doctor said, “You need to get the vaccine as soon as possible.” That was immediately followed with, “You aren’t eligible until Phase 3.” I tried to convince myself that waiting wouldn’t matter. After all, I’m staying at home, right? But what happens when I can’t stay home? What really changed my mind was the breast cancer scare I had several weeks ago. I absolutely had to be seen in person. What happens the next time I have to see a doctor in person? Because sooner or later, it will happen again. The vaccine won’t protect me 100%, but it’s a good start.

And to me, that’s the point. Yes, everyone wants the vaccine. But while some folks want to get it so they can eat at a restaurant or hang out with friends (both very important, and I’m definitely not negating the importance of either one), those are optional. There are ways to see people outdoors and at a distance with masks on. Meanwhile, some folks must get medical care, in person, up close, and indoors. Yes, medical offices take precautions. Still, these are not optional visits, and we should be as protected as possible.

Are there folks who need a lot more medical care than me? Yes. Are there folks who are at much higher risk of Covid complications? You bet. I’m not suggesting that people like me should have been first in line. Not for a second. I am saying unequivocally, without the slightest hesitation, that we should not be last in line. It is inexcusable.

This is nothing short of ableism. I have had many doctors tell me that I am at higher risk. My rheumatologist keeps reminding me to stay isolated. I have been following the science. I see folks who have higher risk factors than me who are likewise not eligible until the general population. And yet, Massachusetts did not take us into account. Who determined the order of the vaccine eligibility? Were there doctors and scientists involved? How on Earth did this happen? Why allow folks on that first CDC list but not the second? Why allow people who are obese and have type 2 diabetes to get vaccinated at the start of Phase 2 but not allow someone with type 1 diabetes and severe asthma until the end of Phase 2, and not allow someone who is 54 years old with type 1 diabetes and liver disease until the general population? This makes no sense.

This reminds me of one year ago, in the spring of 2020, when we were first learning about the risk factors of having severe complications from this horrible virus. Over and over people said that most folks shouldn’t worry too much because it mostly just effected the sick and elderly. They were saying, “I’m not worried because I’ll probably be fine, it’ll just kill others.” They were saying that they didn’t care about our lives. That our lives didn’t matter as much. That our lives had less value. Well, fuck that. Our lives have plenty of value and suggesting that it’s okay for those who are sick and/or elderly to become incredibly ill and possibly die is horrifying and inexcusable.

And now, one year later, so many who are sick and older are told to wait because their/our co-morbidities don’t count. What bullshit!

This week, Massachusetts announced that in one month everyone will be eligible for the vaccine. So many disabled people, already at a disadvantage because of difficulty accessing the system, will be forced to compete with healthy, less-at-risk folks for those coveted timeslots. If the past is any indication of the future, a lot of disabled folks will end up at the end of the line, behind healthy folks. This is not ok.

There is nothing I can do about this. I called the governor’s office and reached out on social media. I have spoken up about it in the few ways that I could. I know that this post won’t change anything. But hey, this site is called Chronic Rants, after all, so I am ranting. I am ranting because once again, the government is being ableist and getting away with it and it makes me want to scream.

Maybe we shouldn’t be first, but we absolutely should not be last.

2 Comments | Frustration, Healthcare, Politics, Rants | Permalink
Posted by chronicrants

Waves of relief

March 3, 2021

Waiting for the biopsy results was the longest two weeks I’d ever experienced. Why did the pathology lab have to be backed up now, of all times? I was terrified. If it was breast cancer, I wasn’t sure if I could handle it. This might just be the thing that broke me. The thing that was one thing too many. Who even knew that breast cancer could present as a skin irritation? I thought I was seeing the dermatologist for something weird, but benign, and now I was suddenly waiting for biopsy results. Would would I do if it was cancer?

That was more than a dozen years ago. The results came back negative, and I was relieved, and went on with my life. Until two weeks ago. Two weeks ago, I happened to see something weird in my peripheral vision as I passed the bathroom mirror. I looked closer. I had something weird on the side of my breast. It looked like maybe a pimple that had gotten irritated and popped, then scabbed over. Weird. I know pimples on breasts are possible, but I don’t usually get them there. I moved on.

The next day I took another look. The scab looked green-ish and the red area around it had grown larger and darker. Uh oh. I thought of that other time, more than a dozen years ago. It was after hours, but the next morning I called my nurse practitioner’s office and set up a telehealth appointment. My NP is a women’s health specialist, and really knows what she’s doing. I waited anxiously for the next day’s appointment. Then it occurred to me to send in photos. As soon as she saw the photos, the NP told me to come in, and mentioned that we might need to schedule a mammogram. Now it was Saturday, and they were about to finish seeing patients for the day. They didn’t see patients on Sundays and the scheduler wouldn’t be in until Monday. I waited. And waited.

Finally it was Monday, and I reached out first thing to get an appointment. The soonest was Wednesday, but I asked the scheduler to call me if there were any cancellations. I was a nervous wreck. For the first two days I had told myself that I was overreacting by even considering the possibility that this was anything other than benign, but when my NP mentioned a potential mammogram, I knew it wasn’t all in my head. Like I had all those years ago, I wondered if I could handle cancer. I wondered if it would be the thing that broke me. But this time, I was pretty sure it wouldn’t be. I would deal with it, somehow.

I was fairly sure that even if this wasn’t cancerous, it was probably infected. The center scab had come off, then scabbed again, then come off again, even though I was careful not to touch it. Each time the scab came off, it oozed. The center was yellow/green and the surrounding area was red. This was not good, whatever it was. But I had to wait.

The timing was odd. I had my first period in at least a year. I was taking antibiotics for SIBO, a gut issue. Those antibiotics target the gut, though, and wouldn’t help this. I hadn’t been indoors anyplace in 5 months. But if ever there was a time to go indoors despite the pandemic, this was it. This all ran through my head for days. Then on Tuesday, as I sat at my kitchen table sewing masks, the phone rang. There was a cancellation at 1pm. I looked at the clock: 12:21pm. I live 35 minutes away. I took it without hesitation. I shut off the sewing machine, threw my things in a bag, and ran out the door. I ate my lunch in the car with my hands, thankful that I had leftovers available. A cold hamburger patty, cold roasted potatoes, and cold salad never tasted so good.

Even while highly on edge about the thing on my breast, I noticed and was grateful for the office’s excellent Covid protocols. The assistant took my vitals. Then I sat in the room while my NP called me on my cell phone (which I’d been instructed to bring for this purpose) and asked me to explain the situation. This minimized our time together in the room. She came in and washed her hands carefully while clearly trying to distract me with neutral conversation. Then she came over to examine me. It was my first physical contact with a human in months, but I didn’t even notice that part. The only thing I processed was her response: she was relieved. It wasn’t cancer.

I left that office with a prescription for antibiotic ointment and with the confidence that that open sore was not indicative of breast cancer. Then I celebrated. The day before I’d baked cookies, which I ate as comfort food because I was stressed out. Now I ate them to celebrate. I blew off all responsibilities and spent the afternoon playing computer games, taking walks, and relaxing. I happened to see a neighbor’s adorable puppy on one walk, and had a lot of fun playing with him. What a joy!

The next day, I woke up and remembered it all immediately. Again, I felt relieved. Again, I had a relaxing day with few responsibilities. It was just what I needed after such a harrowing week.

Of course, responsibilities can’t be held at bay forever, and I am back to doing the things that must be done. Still, I am hugely relieved. As I put the antibiotic ointment on my breast three times a day and notice that the scab has not reopened and the redness has continued to shrink and fade, I feel the relief all over again. This could have been so much worse. So many times, my body has defied the odds and given me some new terrible condition, but not this time. So this time, I’m celebrating.

2 Comments | Expectations, Healthcare, Raves, 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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