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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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.


I couldn’t remember how I “got better”

February 23, 2017

It’s not like I’m “healthy” by any means. But compared to 5 years ago, I’m a different person.

If you were reading this blog 5 years ago, you know that I was struggling to get through each day. If I went grocery shopping, I’d be so exhausted that I wouldn’t leave the house again for the rest of the day, or the next day either. I’d rest up for 2 days so I could spend an afternoon with my family, then I’d need 2 more days to recover. I didn’t leave the house much, and when I did it was really tough. I researched my health issues and began to find answers. I would read 3 pages in a book, fall asleep, wake up having forgotten what I’d read before, and have to start over. The brain fog made it hard to understand any of the medical concepts and I often had to read the same paragraph 5 times. It took ages to get through one book, but I did it. And I learned from it. And then I started the next book.

So how did I get from there to here? Here, where I can go to the grocery store, read a chapter in a book, and cook a meal all in one day, while still feeling ok. It’s like a miracle!

Someone asked me today about medications I’d taken. We’d just met, but I’m obviously open about my health conditions and she’s in the medical field, so she was curious. But the thing is, I couldn’t remember.

Later, it started coming back to me. The diets. The supplements. She asked about prescriptions, but those weren’t what did it. Except the thyroid medication. I’d forgotten about that. Oh yes, that helped a lot. Getting rid of the daily nausea did wonders. And the supplements, slowly over time, began to work. Of course, I forgot about the sleep apnea diagnosis. First the CPAP machine, then the ASV machine (similar to a CPAP, but with different air flow) did wonders for me.

I guess the brain fog still rears its ugly head, because I honestly could not remember any of that in the moment that she asked. I think every day about how much better I’m doing. I am so happy, grateful, appreciative. There are a million “What ifs” for how I might not have improved. But I did improve. Thank goodness.

So the next time I can’t remember how I did it, I will remember to read this blog. These 5.5 years of writing are like my medical diary. It covers all of the big moments, good and small. Not to mention the hell of dealing with benefits (my food stamps got cut off again last week! For crying out loud! I got them back, but come on….)

The thing is, I couldn’t remember today how I managed to improve. But I didn’t forget that I had. I didn’t forget February 2012 when I first cut out gluten. I didn’t forget falling asleep while I struggled to read a book about hypothyroidism. And I didn’t forget how grateful I am for the improvement.

I remembered the important parts. I blocked out the struggle.


Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.


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