Would it be different if I weren’t a woman?

August 21, 2019

I started a new medication. My doctor and I had discussed beforehand that the dose I wanted based on my research was higher than what he suggested. We agreed I would start at his level, then go up only if needed.

For the first two days I felt absolutely horrible. I increased the dose and felt less bad. I increased more and felt better. So I stayed at the higher dose for a bit. It still wasn’t having the effect I had hoped for, but I needed more time, and the higher dose meant my prescription would run out early. I messaged my doctor to get a new prescription.

My doctor said he didn’t remember discussing the higher dose and thought I should be on a lower one. We went back and forth several times in email. I was anxious: challenging doctors can be problematic. I don’t want to be considered a “difficult” patient. I want my doctor to like me so he’ll help me more. Many doctors dislike being questions. Many people dislike being questioned in general, of course, but doctors often have big egos, and are treated like they know it all.

As I talked to my therapist about my anxiety, I discovered two interesting things. First, she helped me connect my anxiety to the way some medical practitioners had treated me in the past. It all made sense when she connected the dots. In fact, it seemed obvious, but I hadn’t seen it.

Second, as I spoke, I said that this wouldn’t be a problem if I were a man. I didn’t even realize I was thinking that; it just popped out of my mouth. And the instant it did, I knew it was true. I had an imagine of the conversation I’d had with my doctor in his office when he prescribed this medication. I thought about how I presented my own research and his reaction to that. He wasn’t entirely dismissive, but he didn’t really consider it, either. And I felt that if I were a man, he would have actually listened to me and considered the merits of what I presented.

Am I right? Who knows. I can’t test this. But here’s what I do know: it is documented that women and men are treated differently by medical professionals. You can read about it here and here, among other places. Sometimes I wonder if this entire journey would be different if I were a man. I’m not saying men have it easy. They are often maligned for “giving in” to symptoms, and they are discouraged from expressing and dealing with the complicated emotions that come from living with chronic illness. Still, I wonder. Would I be taken more seriously? Would I get of the tests I request, less resistance to the treatments I want to try? Would a doctor still have refused to give me a medication in my late 20s because it would cause infertility, even though I told her I was willing to risk it?

Obviously, I have it easier in many ways, too. I am cisgender, petite, white, and well-spoken. That gets me farther in a lot of situations, including medical settings. I am bisexual, but most doctors don’t know that, just as most don’t know that I am Jewish. Still, this question about gender weighs on me.

I am curious, what experiences have you had in medical settings that you think may have been different if you presented as a different gender? I’d love to hear about them.


Acknowledging the pressure

July 23, 2019

“You’re feeling a lot of pressure.” When my therapist said those words, everything clicked into place. Yes! That’s what I was feeling and unable to acknowledge for myself, much less express to her, but she figured it out. And suddenly, it all made sense.

It’s hard enough to feel ill all of the time, but I also feel responsible for how I address my illnesses. I go to 5 different doctors and get 6 different opinions. I do my own research and figure out a course of action, but no doctor will order the tests I want or the prescription that I feel will help. I try to sort through all of the possibilities, the research, the unknowns, the assumptions, the inconclusive data. I talk to experts and I ask questions of other patients. I look at as many resources as I can. But at the end of the day, it’s up to me, and me alone, to decide what to do.

That’s a lot of pressure!

I want to feel better. I want to feel as well as possible. I don’t know what that is. Would that mean I was well enough to walk 3 miles? To finally get and care for the dog I’ve always wanted? To attend a wedding without having to leave early? To go out 3 nights in a row without becoming so ill that I can’t function for days afterwards? What is a reasonable goal? I don’t know. No one knows. But still, I aim to feel better, whatever that might be.

And as I aim to feel better, I must make myriad decisions. It’s scary and overwhelming. I have a bit one coming up in a day and a half and yes, I am overwhelmed and scared. I have a lot of research to do between now and then. I worry that my doctor might not agree with the approach I want to take or vice versa. I could be wrong. I won’t know until I try this new medication. This is my health, my one and only body, my life. If I get this wrong, there are no do-overs. The result would be damage that is likely irreversible. On the other hand, doing nothing will also result in irreversible damage, which means I have to do something. And I am the only person who can ultimately decide what that something will be.

So yeah, that’s a shit-ton of pressure. And I hate it. At least now I recognize it for what it is. I am learning to sit with my feelings. Still, the pressure is intense and it’s real. This is my life that I’m deciding about. I hope I make choices that improve it.


Insurance that won’t cover medication

May 10, 2019

I have always been financially independent, meaning I supported myself. I worked in nonprofit for my entire career, so I never earned a lot of money. Still, I lived frugally and made it work, while managing to save money. Then I became too sick to work. Suddenly, money became a big problem.

Social security, fuel assistance, and food stamps helped, but they weren’t enough. I was pulling money out of savings every month. Thankfully I had savings, and enough that I wasn’t on the verge of ruin, but not enough to last me indefinitely. I tried to work multiple times. Each time I increased my hours, I got sicker. Some weeks I could manage 5 hours of work. Some weeks 10 hours. But if I tried to work 10 hours per week for two weeks in a row, it was a disaster. Even 5 hours per week wasn’t sustainable over time.

Then last year, I got Section 8! (For those outside the U.S., Section 8 is a housing subsidy. These days, the wait list to get Section 8 can be 10 years or more, and the restrictions for using it are very strict. With this type of Section 8, you pay no more than 1/3 of your income on rent, and the government covers the rest.) I was in shock. I thought I would be on the waiting list for several more years, but out of the blue, I reached the top of the list. Finally, I could cover all of my basic expenses with my benefits! I would still have to take money out of savings if I wanted to go to the theater, eat dinner with friends, buy clothes, or pay for car repairs, but this was still a huge improvement. It lasted about a minute.

Less than two months later, I got kicked off of food stamps. They said I earned $20 per month over the limit. I had no idea where that number came from, because I wasn’t close to the limit. So I did the paperwork and sent it in. I got food stamps back, but the same month I started a new prescription. It has to be compounded, as probably all of my medications will have to be from now on. That’s the only way to get this particular medication without any corn or gluten in it, which is a medical necessity for me.

Unfortunately, Medicare doesn’t care that it’s a medical necessity; they refuse to cover compounds. At $150 per month, this is obviously not in my budget. I appeal and was denied. I found an amazing patient advocacy group that helped me with a second appeal at no cost. My patient advocate helped me in many ways and this time my appeal included a 1000 word letter about why I need this medication and how it helps me, a more thorough letter from my doctor, and more of my own medical records.

And I was denied. Again. I can continue to appeal but it won’t help. Compound medications by their very nature are not FDA approved, and Medicare won’t cover anything that isn’t FDA approved. So I’m stuck.

Again, the good news is that I can afford this. I have savings. The bad news is that savings only goes so far. And every time I need to add a new prescription (I will probably have another in the next month or so) it will most likely need to be compounded. The costs might vary, but it won’t be cheap.

I take a lot of supplements and visit a lot of medical professionals. I spend about $600 on healthcare despite having great insurance. I take only ONE prescription medication and yet my insurance won’t cover it, so now I need to increase my medical spending by 25% to cover this additional $150 per month.

For a few weeks I could cover my expenses without dipping into savings or having to ask my parents for money. It was glorious. If only Medicare worked the way it should, I would still be in that position. Instead, I am watching my savings slowly go down month after month and it’s terrifying. But I need this medication to live.

Now please excuse me, I need to go call in a refill of my medication.


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?


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.


Panic, thyroid, and medications

January 24, 2019

The thing about thyroid hormones is that they are needed for every part of the body to function. When you look at the list of hundreds of hypothyroid symptoms, you can see exactly what I mean. We need thyroid hormones.

It took too long for my hypothyroidism to be diagnosed. I am certain that the years-long delay in diagnosis and treatment led to some of the long-term damage to my body. Eventually I was diagnosed and put on medication.

Nine years later I did my own research and realized a lot of my ongoing health issues were untreated thyroid symptoms. I switched to a different class of medications altogether called Natural Dessicated Thyroid (NDT.) Instead of synthetic, human-made hormones, I was no taking pills formed from pig thyroid. You see, pigs produce the same thyroid hormones as humans, and in similar proportions. Many hypothyroid patients see huge improvement on these medications. Eventually I even got my father to switch to NDT and he also found improvement.

Things went well until several months ago. After years on Nature-throid I was suddenly hypothyroid again. What the hell?! I read on a hypothyroid blog that a lot of Nature-throid patients had seen a resurgence of symptoms since they changed their manufacturing process last year. At the time they swore they weren’t making any changes other than switching to a bigger facility. We’re now learning that there were changes to the ingredients after all, and that these were having unintended consequences for many patients.

I spoke to my doctor, who gladly wrote me a prescription for another NDT called NP Thyroid. But when I called the company that makes NP Thyroid I learned that it contains cornstarch. I react badly to corn. This would be a tiny amount but even so, I would eventually have issues with it. So we turned to compound medications.

The compound pharmacy is horrible. I won’t detail the issues now, but they suck at filling a prescription. I should have had this prescription last week but they keep having delays. My old Nature-throid prescription may not work well but it’s better than nothing so I figured I better get a refill, since the new compound wouldn’t be ready before I ran out of medication.

And then I got the call: Nature-throid is back-ordered until March. They don’t know why. No one has it. I asked around and learned more. The raw ingredients are back-ordered so it’s not just Nature-throid but all NDT medications! I even called a different compounding pharmacy and they said they can’t get their hands on it either.

SHIT!!!

So now I’m panicking, because I need my thyroid medication! And remember how I said thyroid hormones effect all parts of the body? Well, they affect mood, too. I have been more emotional lately due to being in a hypothyroid state. So while the issues with the compounding pharmacy are rightly upsetting me, I am getting even more upset than I usually would. I don’t have the capacity to properly react to things right now. This means I’m extra stressed out.

And ironically, the thing that is currently causing me the most stress is my inability to get my hands on the medication that would fix the problem that is causing me to be so emotional.

There aren’t a lot of options here, and things could get very bad. If I can’t get more NDT (I’m cleaning out every pharmacy that I can right now) then I will have to go back to synthetic medications. But those probably contain corn in the fillers and might not even be gluten-free. Not to mention, they simply don’t work as well as NDT. There’s a good reason I stopped taking them. But my thyroid can’t produce enough hormones on its own, so what choice do I have?

For any of you who take NDT, stock up now! Get extra refills if you can. Because the next few months could be rough for anyone with hypothyroid who takes these necessary, life-saving medications. And if you know anything about why this back-order is happening, please comment below or email me at msrants at gmail dot come because I would love to know.

Good luck to all of us. Let’s hope they bring our medication back soon. Because our lives depend on it.


What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!


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