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?

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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!


Wishing someone would tell me what to do

August 20, 2018

When I was a kid and I didn’t feel well, my mother would bring me a cool cloth for my forehead, some children’s Tylenol, juice, and toast. She took care of me. She told me to rest, to watch tv, to read a book. She told me if it was severe enough to go to the doctor. I didn’t have to think.

It’s not like that as an adult. Now I have to take care of myself. I have to remember to take the medicine, to rest or not, to buy juice at the store. Of course I miss having my mom take care of me when I’m sick, but mostly I manage those things ok. What I miss the most, though, is someone else telling me what to do. Making the big decisions.

Sure, I still struggle sometimes with when to take the Tylenol when I have a fever, but that’s not such a big deal. The harder piece is choosing which treatment approach to take with my chronic illnesses.

I have a long list of illnesses of course. And just when I think I know where to focus my attention, one of the supposedly not-so-important illnesses taps me on the shoulder, winks, and then pushes me down a flight of metaphorical stairs.

Like my PCOS. Everything seemed to be just fine, and then I got a period so heavy that my doctor told me to go to the emergency room due to the blood loss. Then I became depressed for several weeks as my hormones did wacky things. Not fun. I was already considering trying a new way to manage my PCOS, but that episode made it clear just how necessary a new plan was.

Now I have seen 4 medical practitioners who I trust a lot, and I have 4 potential treatment approaches. And I don’t like any of them. I desperately want someone else to tell me what to do.

You see, most people just take birth control pills and they’re fine. The problem for me is that birth control pills make me incredibly sick. Since those aren’t an option, I need to find something else. (Sometimes Metformin is prescribed. I tried this once and immediately had an allergic reaction, so that’s not an option, either.)

It’s easy to knock out 1 approach right now: the one I’ve already been doing. It worked great for many years but has recently become ineffective, so that has to go. But what about the other 3? They each seem reasonable, but which to try? Each of them has the potential to make me feel incredibly ill, so I’m not anxious to try any of them, but not doing anything isn’t an option. Each doctor makes an excellent case for each approach.

I will try one, and if I don’t immediately have horrible side effects, it will take months to know if it works. So it could take a year or more to find a treatment that works. If any of them do.

I want someone to tell me: do this. Simple. Easy. But that isn’t an option, either. So I will continue to debating, to research, to question. And in the end, maybe I will make the right choice and maybe I won’t.

These decisions are complicated and difficult. Sometimes the choice is obvious (though still not easy) but often it’s not. And no one is going to make it for me.

In case you’re curious, here are my current options (from an endocrinologist, a naturopath, a women’s health nurse practitioner, and a gynecologist – clearly I’m not limiting my sources!):

  1. A progesterone compound. I feel sick when I take it and it no longer works effectively to give me a predictable cycle.
  2. A supplement called Calcium D-Glutarate. It should help balance out estrogen. This appeals as an easy thing to take that can be easily stopped, but I’m concerned about what it does. It lowers estrogen, and the other practitioners say I need to increase progesterone and estrogen and/or lower testosterone, so I’m not sure this is the right approach for me.
  3. Progesterone cream. It’s harder to dose and I have to be careful to not damage my skin. It would hopefully fix my cycle but not the other symptoms so I would have to take spironolactone. This makes me nervous because it’s a blood pressure medication and my blood pressure is already too low.
  4. An IUD. This makes me nervous because if I have a reaction, I can’t quickly remove it myself. Again, I would need to take spironolactone in addition.

If any of you folks with PCOS have tried any of these things, I’d love to hear about your experiences! Maybe you can help me make an informed decision. Because I’m not having much luck so far.


Shining a light on disability-related injustices

June 21, 2018

Yesterday I spoke to a reporter about health-related stuff. This isn’t the first time, and I’m pretty sure it won’t be the last. I’m also sure it won’t be the last time I bring a new (to them) subject to a reporter’s attention.

Speaking to a reporter used to feel like a big, once-in-a-lifetime kind of thing. Not anymore. As I have become more vocal about health- and disability-related issues, mostly on Facebook, friends and friends of friends have connected me with reporters they know who are writing on these topics.

I answer their questions the best that I can. When they plan to use my full name, I’m extra careful. I was clear yesterday that the article – which based on her questions seems to be about the “opioid crisis,” insurance coverage of alternative treatments, and new medications that are about to come on the market – would not be complete without also discussing medical marijuana. I was just as clear that I would not be willing to talk about medical marijuana if she used my full name, but that I would be glad to discuss it in detail without my full name. That’s my comfort level. For other people it’s different.

Still, I told her what I could because I think it’s important that the patient perspective is included. Too often in these discussions we hear from politicians more than anyone else. Sometimes they talk to doctors. But what about the people who are supposed to be benefiting from these medications?

Now here is where it starts to get a bit interesting. You see, we all have superpowers, and my superpower is getting people to open up to me. It happens without me even trying. I guess I inherited this from my great-grandmother. Apparently she would sit next to a stranger on the subway, and by the time she got off the train she knew their entire life story. My grandmother was the same way. So is my mother. I think people are happy to talk to anyone who will earnestly listen and care, which we do.

I also have an insatiable desire for knowledge. I read a lot. I talk to people to learn things. I reach out to others both to learn and because I care about them. And I’m generally sociable. Add that up, and I know a lot of random shit. Including about health and disability issues that don’t directly affect me.

That’s why when the reporter asked me my feelings about new medications containing cannabinoids (active constituents in marijuana), I not only told her my own feelings, but I was able to tell her about the controversy around these new cannabinoid-containing medications to treat children with epileptic seizures. I’m not in that community, and I made it clear she should talk to those folks to get a full, accurate picture. (My understanding is there’s a lot of concern that once these medications are available, they will no longer be able to get medical marijuana for their kids, and if the medications aren’t as effective as medical marijuana – they don’t have to be as effective to be FDA-approved – then they won’t have any good options for their children.) I also offered to connect her to them.

Over the course of our conversation, I told the reporter a bunch of things like this. Like when she asked my views about the problem of primary care physicians prescribing opioids in a one-size-fits-all manner without customizing things to each patient, I corrected her very strongly. I hear that bullshit a lot but, like I told the reporter, I have only ever heard it from politicians. It makes for a good headline, a good soundbite. But I have NEVER experienced that. Neither have my friends. Or the folks who comment on my blog. Or the people in my chronic pain support group. Or the people in the various Facebook groups I’m in. She was surprised and asked a lot of questions about this.

I felt good about correcting these misconceptions. It’s important to correct them for everyone, but especially for a reporter writing an article on this topic in a major newspaper (I won’t mention which newspaper, as part of protecting my anonymity on this blog.)

Now here’s where it gets even more interesting! At the very end, as we were about to say goodbye, I had an epiphany. After writing this post a couple weeks ago, I was able to speak to 2 different lawyers about the SSDI case review. And after we finished, one of them told me some interesting things. This is part of that superpower I mentioned – people just tell me things. And yesterday, I told the reporter.

I told her how the lawyer told me that she (the lawyer) has seen more SSDI case reviews in the last 6 months than in the past several years combined. The reporter sounded shocked. She asked a lot of followup questions.

I also told the reporter that the lawyer told me the number of case denials has increased a lot in the past year. Of course, before mentioning that I first explained how horribly high the denial rate had been before, and the impact it has on many people. Again, she sounded surprised. She asked followup questions. Including, did I think it was related to this current administration. I was clear that while my opinion was yes, that was only my opinion. I hope it’s enough, though, to cause her to dig into this. Because it is shameful that the safety nets we are supposed to rely on aren’t there for us. That’s why I also pointed out that SNAP (food stamps) allotments have gone down while the Section 8 waitlist has gone way up.

It’s possible this conversation will be forgotten in a pile of other upcoming articles the reporter needs to write. Or maybe her editor won’t be interested. Or maybe, just maybe, the reporter and her editor will see the huge impact of these new SSDI case review rates and denial rates, and they will also notice that no one else has been writing about this, so they could scoop the other newspapers. Maybe they will do some research and write it up and bring awareness to their readers that this is happening. And remember how I said this is a major newspaper? Well it’s big enough that if they report on this, all of the others will jump on the bandwagon. And then we might be able to build enough momentum to get the government to stop this fucking bullshit and treat us with the respect and dignity we deserve, by giving us the benefits we already paid for.

Or maybe none of that will happen. But I am trying, and it feels good to try.

Do you guys know of other “hidden” issues like this that we need to shine a light on? Please mention them in the comments or email me at msrants@gmail.com. I’ll do what little I can to publicize these things so they aren’t hidden any more, and I encourage you to do the same!


How dare insurance not cover my specialists

March 27, 2018

24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.

First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.

Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.

Another doctor said I had IBS and gave me a prescription.

Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.

The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.

I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.

Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.

After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.

And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.

It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!

And I have no fucking clue what to do with them.

Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.

There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.

So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.

I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?

So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.

What if I was one of the ones who couldn’t?


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