Normalizing the horrid ways I’ve been treated

April 13, 2019

For seven months my therapist has spoken with a woman who fights hard for her health, who does her own research, fights with insurance companies, argues for the tests she needs, pushes her way in to seeing the best doctors. So it’s no surprise that when I expressed my fear that I might one day just give up the fight, my therapist asked a question to which she thought she knew the answer: “But is there really any chance that you will give up?”

She definitely looked surprised when I said yes, but it was the look on her face when I told her why that surprised me.

Here in Massachusetts, there’s a large doctor network (Harvard Vanguard now, previously called Harvard Community Health Plan for you local folks) where the doctors refer patients within the network, read each other’s notes about patients, see each other’s patient test results, etc. These days this isn’t so unusual, but back in the 80s and 90s it was. Going to these doctors seemed like a good thing, because they communicated with each other. I spent my entire childhood and my early adulthood there.

When my therapist asked if I might really give up I said yes, because it’s so exhausting to keep fighting. And who knows if getting better is even an option? Sometimes I really want to just give up, to say that this as good as it’s going to get and I’ll maintain what I have, but there’s no point in trying for more. And then I do it anyway. Even though it’s exhausting and all-consuming and overwhelming. But maybe one day I won’t. After all, I gave up once before.

I’m not talking about taking short breaks, while knowing I will resume the fight again in a few weeks or a few months. I’m talking about actually giving up, choosing to stop trying altogether. After all, it’s what the doctor told me to do.

I had been undiagnosed for around 7 or 8 years. I had seen many doctors and even had exploratory surgery which yielded no answers but did manage to permanently increase the pain. Sadly, one downside of that doctor network is that I only saw the doctors that I was referred to, and I was referred to the ones who could properly diagnose me, like a rheumatologist. That would have been very helpful. Instead I saw surgeons, orthopedists, and other specialists who didn’t have any answers. Of course, I was also sent to a psychologist, but that didn’t help the pain for now-obvious reasons.

I will never forget the day, almost 20 years ago now, when I saw yet another doctor for yet another opinion, endured yet another painful examination, and was told to stop coming in. She didn’t mean I should stop coming to her office, but to the entire network of doctors. She made that very clear. And since the other doctors hadn’t been able to help, had been condescending when I suggested that perhaps my different symptoms were related (it was years later that I found out they were in fact related, and earlier treatment could have helped a lot,) and generally hadn’t tried to help me if there was no immediately obvious problem they could name, I gave up. I was done.

For a couple of years I stopped seeing doctors for anything more than annual checkups and acute situations. I didn’t even consider attempting to get better. I would simply be in horrible pain every minute of every day for the rest of my life.

Obviously that didn’t last forever and one day, practically out of the blue, I decided to take advantage of my ability to see a doctor without a referral for the first time in my life. I found a rheumatologist and was diagnosed within a week of that visit with an autoimmune condition. It was my first correct diagnosis. But before that, I had given up.

You would think my point in telling you this would be to show the value of self-advocacy, doing our own research, etc. That’s not my point today. That has been my point in many other posts and it will be in many more to come, but today my focus is on how I have normalized that horrible incident with the uncompassionate doctor. When I casually mentioned that the doctor had said I should stop coming in, I saw the look of horror on my therapist’s face. She’s not naive. She has worked in the medical system for many years. She knows this kind of things happens, but she hasn’t normalized it like I have.

That’s not to say I think it’s ok. And if someone dared say that to me again, I would react very differently now, that’s for sure. I certainly wouldn’t stand for anyone saying that to someone I care about. But back then, I was scared and shy and tired of trying, so I accepted it. And over the years I have seen and experienced so many forms of terrible treatment by medical professions and by the systems that are meant to support our health that I am no longer stunned. I am sickened and angry, but no surprised.

I don’t like that I have become so jaded, but I guess that is what 27 years of chronic illness does, at least in the U.S. medical and benefits systems. And what I find even sadder is, I know I’m not the only one.

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

Fallout from the mystery trigger

March 28, 2019

It started with horrible eczema on my hands. All day they were fine, then they were dry, tomato red, painful, cracked, and bleeding. Later there was gas. Then abdominal pains. Then constipation. Finally diarrhea, as my body got rid of the offending element and everything else I had eaten.

Clearly I ate some gluten or corn at some point. But I wasn’t all that sick, all things considered. This didn’t last as long as some other episodes. Plus, I’m super careful. Still, I had stayed over at my parents’ house, and even though I tried to be careful, there were crumbs everywhere, and we all pet the dog before and after meals. And we ate out at a restaurant that has always been ok for me, but maybe they made a mistake? I just don’t know, and not knowing makes it even harder.

The next day I was fatigued, but that makes sense. After all, my body had been through a lot. I had turned off my alarm clock and slept much longer than usual. Still, I was worn down, so I spent the day watching tv. I didn’t eat as much as usual, but I ate. I figured I would be fine by the follow day.

Yet I woke up today still feeling fatigued. It’s close to noon and the fatigue and brain fog are both intense, and much worse than what I typically experience. I am having trouble thinking clearly, and I wonder how much sense this post will make when I read it in a few days. Assuming I’m feeling better in a few days. Because who knows?

Now I am wondering how long this will last. I already canceled my therapy appointment tomorrow, but I have a big family event the following day – should I go? Even if I’m feeling better, would I be up to the hour-long drive in each direction? And to make it even worse, I finally scheduled that iron infusion, and that’s just 5 days away. I want to get it over with, but will my body be strong enough?

I don’t need to decide these things yet, but I will have to soon. If I skip the family event, I need to give another person time to make alternate travel arrangements. If I reschedule the iron infusion, I can’t do that at the last minute, especially since a friend is arranging her schedule so that she can go with me.

I have no idea when I will feel better. It could be later today or in a month. And what’s especially frustrating is that I don’t know what caused this! I wish I knew. Was it corn? Gluten? Something else I can’t have that I’m not even aware of yet? Was it the restaurant or my parents’ house or somehow something else?

I’m frustrated more than words can say, but there’s nothing I can do. Which is why in about 90 seconds I will once again be sitting on the couch, watching hours of tv. Because I just don’t have the energy to do anything else. Not even the many things I wanted to do today. And it’s all because of something I ate, even though I don’t know what.

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

I don’t know what to hope for

March 21, 2019

I read a lot of stories about patients improving to the point of their symptoms going into remission and even being able to take a jog or get a job. Of course, I also read stories about those who get much worse are are unable to care for themselves. Right now I fall somewhere in the middle, and I very much want the former but worry about the latter.

It’s hard to be involved in the chronic illness community and not hear these stories, I suppose. I read blogs and follow various Facebook groups. I imagine I would see a lot more if I was on Instagram on Twitter, but that’s more than I can manage right now. So often I worry about getting permanently sicker. It’s one of my biggest fears. But every now and then, I wonder, could I get better?

Now I’m not fooling myself. I will never job – my knees are permanently unable to support jogging. I can’t imagine how my symptoms would ever go fully into remission. But what if I could still get significantly better? Is that even possible?

When you sprain an ankle, your expected outcome is to completely heal. When you get a cold, your expected outcome is to completely recover. But when you have chronic illness, there simply is no “expected outcome.” I read stories by thyroid patients whose symptoms went into remission, but they usually caught it early on and immediately treated it properly. I did not. I read stories about folks with adrenal insufficiency who recovered completely, but they usually caught it early on and were able to remove the offending stressor. I did not catch it early on and my stressor is my chronic illnesses, which will never go away. So what is realistic for me?

There are no answers. I know that. But that doesn’t make it easy to wander through this maze of diagnoses, doctor appointments, and tests, constantly striving for better health but not knowing what to aim for. On a scale of 1-10, the year after I started this blog I was probably at a 3. Now I’m probably at a 5 or 6. I know I will never be at a 10, or even a 9. But is an 8 possible? Is a 7 possible? Already I wonder if I have reached my maximum possible health. But at the same time, I keep trying.

I keep trying because I see the possibility. I have given up many times over the years. I stopped trying to get better because I didn’t know what else to try. Now I have a list of things to try. I don’t know if any can help, and some may even hurt, but how can I not at least try? Some are obvious, like my upcoming infusion (yes, I’m doing it) for anemia and low ferritin. Increasing my pregnenolone makes sense, because blood tests show it’s low, and it’s necessary for progesterone and cortisol production. But should I take Cortef to treat my adrenal insufficiency? Or maybe my fatigue isn’t from adrenal problems at this point but from something else? I continue to find and elimination sources of corn in my diet, most recently realizing that my calcium and vitamin C supplements contain corn. I stopped those a couple of weeks ago and already feel much better. Maybe there’s more corn sneaking into my diet? I have no idea how careful I need to be and don’t want to go overboard, but eliminating corn seems to help. I want to try LDN (low dose naltraxone) which some patients report has helped with their autoimmune disease.

There are more specialists I want to see, supplements I want to try, dietary changes I am considering. Each of these takes ages, and can easily be derailed. I was going to try increasing my pregnenolone this week, but then I found out my compound thyroid was made as a slow-release version, which no one told me (and the doctor didn’t order!) and that explains some of my current problems. I am going to start the correct version of the medication in a few days, and by the time I have adjusted to that, it will be time for my iron infusion. I will need to wait a few weeks after that to see how I’m feeling and if I need a second infusion before I consider other changes.

Any time I make a change, I wait for weeks, sometimes months, to make sure I still feel ok. And so often, some other symptom or reaction gets in the way and I need to delay my plans. That means it will probably take me 2+ years to get through my current list of 9 things I want to try.

It would be so much easier to give up. I’m in a pretty good place, and maybe I should just be happy with where I’m at. But then I think about having to miss my very close friend’s surprise party last weekend because I didn’t feel up to going. And I think about the pain several days ago that was so bad, I had trouble functioning. And I think about those days that the fatigue wears me down unexpectedly. And I think about what happens if one day I want to get married, and I can’t even have the kind of wedding I want because I won’t have the energy for it. And I think about how much I want to spend the entire day with my nieces and nephews but I don’t have the energy for it.

And then I decide to try again. Because maybe I won’t get any better than where I’m at right now. Maybe this is as good as it gets. But maybe it isn’t. Maybe I can nudge my way up to a 6.5 on that scale, and wouldn’t that be worth all of the effort?

2 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Between a rock and an iron infusion

March 12, 2019

I feel so stuck, and I can’t get this out of my head.

It’s pretty apt, as you’ll see.

I have been anemic for ages, but mostly it was ignored. Whenever I tried taking iron supplements they made me sick, and eating iron-rich foods didn’t help, so instead I did nothing. After all, most of my iron tests were fine, it was only my ferritin that was low, and that wasn’t a problem, right?

Then back in 2012 I started doing my own research into why I was so sick and I found all sorts of useful answers. I would be so much sicker without that research (shout out to public libraries!) Among other things, I learned that low iron levels would impede my thyroid improvement via medication, so I had to address it. My regular doctors weren’t helpful, but I managed to see a hematologist in 2013. He prescribed iron infusions and those more than did the trick – my ferritin levels went through the roof.

Over the past six years my ferritin levels have slowly come back down to within the normal range, then lower within that range, until finally 10 months ago I became anemic again. Oy.

I put off dealing with it while I managed some other health issues, but finally I took iron supplements that my naturopath recommended as being especially easy on the stomach. We started out with 1/2 the normal dose. At first I felt ok, so I figured there was no problem. But after weeks of feeling sicker than usual, I finally realized the problem had to be those iron supplements. Within a few days of stopping them I felt a lot better, but I had lingering symptoms for another month and a half.

After that experience, I didn’t want to try iron supplements again. My naturopath suggested taking an even smaller dose, but I had been so sick for so long that I just couldn’t bring myself to do it. Some folks recommended cooking with cast iron pans, but they’re too heavy for me to lift. A friend found something called Lucky Iron Fish and I actually bought one. It’s like cast iron pans, but you boil it in water and then drink the water to get the iron off of it. I chickened out and it’s been sitting in a drawer for months. I don’t want to risk getting so sick again.

But I have to do something. That’s the problem. I made an appointment months ago with a new hematologist, and it’s finally coming up next week. I made the appointment with the idea that I would get iron infusions again but now that the time is here, I’m hesitant. What if the infusions make me really sick? Back in 2013 I don’t know how they made me feel. I was doing so poorly that it was impossible to tell. I had only started seeing my naturopath two months before, had just being adrenal supplements, and hadn’t even started natural dessicated thyroid as my new medication yet.

Now I am in a better place. Overall I feel hugely better compared to where I was in 2013. On the other hand, I’m still struggling every day, and the tiniest thing can make me feel like crap for weeks or months; like those iron supplements I took last fall. So I want to risk a major setback? And unlike supplements, I can’t change my mind and stop. Once I have an infusion, that stuff is in my body.

And what’s in the infusion besides iron? Chemicals? Additives? Other things that could make me ill? I already have a long list of things my body reacts badly to: everything from the dye used in brain MRIs to lavender, corn, various medications, gluten, the pesticides on apples, broccoli, and so much more. And those are only some of the things I’m aware of. I have been thinking lately that there are probably more things I am reacting to. What if some of those things are in the infusion?

So I’m rightly scared and I don’t know what to do. I’m hoping the hematologist has some brilliant idea that I’m currently unaware of, but otherwise, I’ll have to make a tough decision soon. Should I risk the infusion? Try the iron fish? Remain anemic?

For anyone who has dealt with iron infusions, I would love to know what you think! Making medical decisions is often hard, so this is nothing new, but that doesn’t make me feel any better about it. Because no matter which option I choose, I know it could potentially be very bad.

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

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