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.

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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?


Please don’t take away my physical therapy

January 25, 2018

For most of my life, my posture has been lousy. My shoulders hunch forward, I never sit with my legs down properly (in large part because I’m very short, and I can’t comfortably sit that way, since my feet won’t be flat on the floor), and of course, there’s the scoliosis. Two different forms for scoliosis, actually. Thanks to all of that, and a doctor who majorly screwed up (she measured my legs wrong, and for years I wore a lift on the WRONG FOOT!) I have a lot of neck and back pain. And that’s even before you consider my mis-aligned kneecaps, which have worn away most of the cartiladge on the outer sides of my knees.

So you won’t be surprised to learn that I have been in physical therapy for neck and back pain a bunch of times over the years. I’m doing it now, too. But this time it’s really helping. Probably because I’m not getting cut off after a few short months, like all of the previous times.

If you’ve ever done physical therapy, I’m guessing this will sound familiar. I would go in 1-2 times per week for a few months, be given exercises to do at home each time, and then at the end, told that if I go home and do the exercises, I’ll be fine. And when I wasn’t fine, when I came back for more help, I was treated like I failed.

And yes, I admit that I wasn’t as consistent with the exercises as I should have been. But even so, it felt like something else was going on.

That brings us to 2017 when, for the first time in my life, I went to physical therapy appointments for the entire year. Sometimes I would go 2 or 3 weeks in a row. Sometimes I would miss 2-3 weeks. But always, I went back. In between, I did my exercises at home. Sometimes I was consistent and sometimes I wasn’t, but I always tried.

And it helped. A lot! So you can imagine my disappointment when I went to physical therapy yesterday to be told that Medicare has lowered its coverage limit.

Oh boy.

On the bright side, this might not effect me. She had checked and last year I would have just squeaked by under the 2018 limit. Still, it’s disconcerting. We will need to be careful.

We talked about having me come in less often. Or maybe skipping a few weeks here and there. Or maybe coming in for shorter appointments, since the limit is on the dollar amount covered, not the number of visits.

Not for the first time (not even the only time that day!) I came up against the problem of having to manage my health in the face of insurance limits.

On the one hand, this is totally fair. After all, they need to set limits, right? On the other hand, this is my health, and isn’t the whole point of paying into the system so that it will cover me when I need it to? What good is it if it won’t. I’m not the cheapest person on the insurance’s rolls, but I’m far from the most expensive. And damn it, I want my physical therapy! Without physical therapy, my pain and posture will get worse and that will harm me in a lot of other ways, limiting my ability to work, meaning I will need even more benefits.

After all, I am losing a bunch of my benefits this year (yeah, that’s a topic for another post) because I earned more last year. Don’t they want to keep me off those benefits? They should want me to be healthy, if only for financial reasons. They should consider that more physical therapy will actually save the system money in the long run.

But no one worries about that. They certainly don’t worry about the human being behind the numbers. The human being who simply wants to be in less pain, who wants to stick with the thing that works, who tries so hard to feel better every single day.

My physical therapist warned me that Medicare changes its limits every year, and she implied that future changes would not be in my favor. I am not surprised. But I am horribly, sadly, painfully disappointed.


Why first person I turn to is Dr. Me

April 24, 2017

It feels like everyone with chronic illnesses has their own story of medical mismanagement. That leads to everyone having their feelings about doctors and the medical establishment. For me, it lead to a combination of distrust and dismissiveness. Which is why it wasn’t until I had a bad reaction that I realized I should have run things by my doctor. But it just simply had never occurred to me to talk to him about it.

My own story of medical mismanagement has to do with crappy insurance, insular establishments, poor practitioners, and a lack of communication. In hindsight, I still can hardly believe that in 11 years of symptoms, my doctor only sent me to a rheumatologist ONCE, and that was only to rule out lupus. The next time I saw a rheumatologist was by my own design, and I was diagnosed within a few weeks.

As it turns out, the test he used to diagnose me had been run several times before, with results that weren’t high enough for a diagnosis, but that were high enough that they should have been flagged. But no one told me about it, and my primary care physician didn’t keep track of it. So the ball was dropped.

Over and over the ball was dropped. It was dropped when I went to my doctor asking to be tested for lactose intolerance. He told me there was no such test (a lie!) and to keep a food journal. Then he showed the journal to a nutritionist (supposedly) and said that it showed I wasn’t lactose intolerant. That was it. No followup. No tests. No referral to a specialist. A few years later I was “diagnosed” with IBS. I remained sick. I was often underweight. I the pain, nausea, and diarrhea were getting worse. 12 years after the lack of a lactose intolerance test, I told my current doctor that I wanted to be tested for Celiac. She said there was no point, that I clearly didn’t have it, and the tests weren’t accurate anyway. She offered no other suggestions, tests, or specialist referrals. So I went gluten free on my own and saw results within a few weeks. 6 months later, with the help of my new naturopath, I made more changes to my diet. Finally, after 20 years of nausea and other digestive symptoms, I was “cured.”

I could tell you dozens of stories like this, but the stories themselves aren’t the point. The point is that I found little use for primary care physicians. They rarely treated my symptoms properly. The rarely gave me the right referrals without a lot of nagging from me. They were supposed to coordinate my care but never did. So what was the point of them? I kept them because insurance required it, that’s all.

Recently I was having a normal day, when I was hit by a wave of nausea. Then my pulse spiked. I felt like my heart was going to beat out of my chest. I took my pulse many times. At one point it was 114. That’s not good. After 45 minutes or so, it hit me: I was having a hyperthyroid incident! A minor hyperthyroid incident is scary. A major one can kill you. So yeah, it’s good to take these things seriously. I immediately called my doctor, arranged to take the blood test the next day (since the office and the lab were about to close in 10 minutes) and lowered my medication.

When my doctor, and later other doctors, asked what caused the hyperthyroid incident, I was able to give them a short list of likely reasons. They agreed with my assessment. And the question kept coming up: why hadn’t I told my doctor about the change I’d made to my adrenal supplement dose?

The answer: because I never thought of it.

I knew I would have to lower my thyroid dose to account for the new adrenal dose. I had planned to do that the next week. My body just responded to the change faster than I had expected. My naturopath was working with me on this, and she hadn’t expected such a quick response either.

This wasn’t the first time I had changed that supplement. But I had never discussed it with my doctor.

The funny thing is, for the first time in my life, I have a PCP I like, respect, and trust. But I didn’t tell him.

Because decades of dislike, disrespect, and distrust had trained me not to.

I should have told him. I know that in hindsight. And I hope that next time I will. But who knows? I have very good reasons to be so dismissive of PCPs. No one argues with that (except my doctors, of course.) Maybe one day, if I have enough good experiences, I’ll learn to trust them. Maybe.

In the meantime, I continue to default to my own opinion, at least in areas I have researched (like my thyroid and adrenals.) It has served me pretty well so far.

After all, I chose to lower my thyroid dose after that incident. I hadn’t had the blood test yet. I didn’t know for sure what had happened.

Then the test results came back. I was very hyperthyroid. My doctor’s office told me to lower my dose immediately. But that was days later. The delay could have been dangers.

I had made the call myself, and it was exactly the right decision. Because Dr. Me knows my body better than any other doctor ever will.


When even medical professionals don’t get it

March 30, 2017

There are the medical people I know in my personal life: a distant cousin, an aunt’s in-laws, friends of friends. Sometimes it’s just a random person I meet to hears about my health issues and lets me know they work in the medical field.

Some of these people are awesome: understanding, supportive, helpful. And some make me want to scream by thinking they can offer me advice. People I barely know, or maybe don’t know at all, tell me what I should do for my health. Or worse, they don’t understand that I really am sick.

But then there are the worse ones: the medical folks I see for my own treatments who Just. Don’t. Get it.

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Usually I walk away. If they don’t understand, then I don’t want to waste my time. But this latest one is a tougher situation.

It’s my physical therapist. For one thing, she means well but she’s scatter-brained. She asked me if I’d tried a particular yoga pose. I said no, I was told not to do yoga. She was surprised. I pointed out that she told me not to do yoga just a few weeks ago. Things like that. When I walk in, she has no recollection of what we did last time, even though I know she writes notes after every visit.

She also does a good job overall. And there’s no one else to see. It took years for me to find her! I searched for ages for someone to do this particular type of treatment (easy) that my insurance would cover (almost impossible.) One of my insurances covers her and she’s giving me a break on the other. I really appreciate that. She’s been so kind about it. And she does a good job.

But then she wants me to exercise more, to make sure I build up a good sweat. I try and explain how adrenal fatigue works, how that could be dangerous. She wants me to talk to my other doctors to make sure I’m really not supposed to be doing it. You know, in case we hadn’t already had this conversation 80 bazillion times. In case I misunderstood. In case I don’t know my own body! So frustrating!

And then yesterday she grabbed my wrist for the millionth time. I know this is just a typical maneuver. I know she does this automatically because she’s done it so many times before with countless other patients. But she’s a physical therapist and she needs to take each patient’s needs into account and I don’t know how many more times I can tell her not to do this before I completely lose my shit.

Because I’ve been clear. I’ve said it hurts. I’ve explained that I have a long history of pain there. I’ve said that it upsets me. Yesterday I calmly talked about it after the appointment. I explained the emotional trauma a bit. She tried to say there was no need to explain, but I figured hearing it might help her to fucking remember! 

I don’t usually swear on this site, even though I do in real life. Not a lot, but enough. I can hold back when I think it will offend people. Usually. But not today, because this is SO UPSETTING to me!

I have 25 years of pain in my wrists. It was my first symptom. But that’s not the reason it upsets me so much. No, it’s because of how I was treated. Doctors did horrible things to that wrist and to me. I had to start off my explanation by saying, “I don’t have PTSD but….” Because while it’s not PTSD, I do have a panic response. I told her that there is no one in this world I trust to touch my wrist, and that’s true. There are some people I trust to touch near it, and some don’t make me panic as much, but I don’t trust anyone. Not even my mother, my best friends, my past lovers. And certainly not medical professionals!

So we’ll see if she listens. If not, I might have to take more drastic action. But for now, we’ll see.

I try to be patient but she’s a medical professional. She should know better.


The government is voting to kill us

March 15, 2017

On the one hand I don’t want this blog to get too political. On the other hand, how can I not discuss politics when the government is talking about taking healthcare away from millions of people!?

There is a lot I want to say, and I can’t say it all at this moment, but rest assured I will be back to discuss it another day!

For today I want to talk about this feeling that the government is trying to kill us, and how healthy, working people respond to that.

You see, I have said many times that the government is trying to kill us. If you don’t know what I’m talking about, look at that link above. Many healthy friends with jobs think it’s an exaggeration. Most of them will have health insurance through their employers. It might cost more, but they can make up the difference if they cut back in other areas. They hate it, but it won’t kill them.

And if they did lose their insurance, it would suck, but they could cough up the money for the occasional doctor visit or antibiotic. They would hate it, but it wouldn’t kill them.

Then there are people like me. I’m not nearly as well off as they are, but not as badly off as many of my other friends. Because most of my health conditions are pretty stable. If I miss a medication for a few months my health would decline, but I wouldn’t die immediately. I have savings and supportive parents who can afford to help me to a certain extent. We could find a way to cover my more basic health costs for many years. And maybe I would skip seeing the doctors who didn’t feel entirely necessary (though really, I try not to see doctors unless it’s necessary!) And hopefully, eventually, a new political party in office would fix things. We could cover the gap. Besides, I am likely to have some insurance coverage, even though it would be greatly reduced.

But then there are other friends of mine, not to mention the many strangers I have never met. These are people who do not have safety nets. They are more likely to lose their insurance altogether and they do not have the money to cover the costs. For these people, there will be no way to see a doctor or take a prescription. Even worse, many of them have illnesses that will quickly kill them.

These are limited examples, of course. I’m not getting into the many thousands who will become bankrupt and the many other thousands who will have to quit their jobs due to poor health.

These are horrible circumstances. Any reasonable person is upset by this. And then we remember…. our politicians are the ones who want to do this to us. A handful of people with high salaries and kick-ass health insurance (congresspeople have the best health insurance in the country) are deciding whether people like me will be able to see the doctors we need to see.

If you’ve been reading this blog from the beginning, then you know I was working when I started it. I hated to leave my job, but there was no way I could continue to work. I spent years fighting for the benefits I had paid for and deserved. It was a miserable road and I was horribly sick. Now, finally, my health is improving! It is not perfect by any means, but it’s so much better! I’m even looking for ways to start doing a little bit of paid work. This new health insurance situation could destroy that progress. It could stop me from earning any money at all. It could dash my dreams permanently, by making my health worse in a way I might not be able to recover from.

If that sounds dramatic, good! Because it IS dramatic! We are talking about taking away the ability for people to care for their health.

Healthcare should be a right, not a privilege reserved for the rich. But that is what the republicans in this country want. They want to give more money to the rich even if it means killing the poor.

They should be ashamed of themselves. They are voting to kill us.


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