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.

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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.


Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!


Packing a small suitcase is no longer an option

October 20, 2016

I used to travel constantly. And when I wasn’t traveling, I’d often spend the night at my IMG_20161020_202419.jpgboyfriend’s house. So I didn’t think much about packing. Sure, a big trip overseas required more thought, but short trips closer to home were easy. I’d throw a few things in a bag and be on my way.

I’m not sure when exactly that changed. It’s something I think about every time I pack now. Even a night away involves packing a full suitcase, instead of throwing a change of clothes and a toothbrush into a backpack.

Tomorrow I’m leaving for a weekend out of town. 10 years ago that would have meant throwing a few things in a small bag right before I ran out the door. I never understood why anyone would spend more than an hour packing for any trip. Now I get it.

I have a packing list, and I’ll be checking it closely. There are clothes and toiletries, of course. A novel and some knitting, definitely. Obviously a phone charger and, based on the forecast, an umbrella. There are more common things, like my spare glasses. I wouldn’t go far from home without them.

Then there’s my CPAP. And I have to pack an extension cord, because I’m not sure where the bed will be relative to a power outlet. There’s a long list of medications, including the ones that are easy to forget to pack, because I take them at all times of the day. There are my “just in case” meds, too, the ones I don’t take every day, but if I need them, I want to be sure I have them on hand. There’s special food that works with all of my food allergies. A heating pad for pain. Knee braces in case my knees act up. The blue light to help with my sleep disorder, not to mention the nice side effect of also helping my seasonal affective disorder, which is acting up now that we’re well into autumn. Far too many clothes, because my body doesn’t regulate temperature well and I could be sweating or freezing, regardless of the actual temperature. And there are probably one or two other things that I’ve forgotten.

It’s two days and I won’t be bringing a backpack. Instead, I’ll have my full suitcase, expanded so my pillow will fit. It has to be a suitcase with wheels, so I can get it in and out of my apartment building. I’ll also have a separate case for the cpap, and another bag for my food. Because now travel requires a lot more than a change of clothes and a toothbrush.


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