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.


Another season, another dog delay

April 18, 2017

I feel like I’ll never get a dog. It was almost two years ago, in June 2015, when I finally decided I was ready to get a dog. And here I am, dogless.

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If you’ve read this blog for a while, you know I came close. That was a year ago, and here I am, no dog.

After last year’s fail, I was shaken. I felt that I shouldn’t have a dog. Finally after many months, I began to feel almost ready again. Then my parents went out of town and I watched their dog for a week. See that fluffy cuddler in the photo? After a week with him I was SO READY! But I had been applying for apartments, I had no idea when I would move. What if I got a dog and then learned I had to move just a few weeks later? Even if the dog could handle it, I knew it would be too much for me. Even just the move alone felt overwhelming.

So I waited.

And waited.

Just a few weeks after cuddling with my parents’ lovebug, I was offered an apartment. That meant no dog until after the move. Once I moved, I had to unpack and get set up. I kept telling myself I should get fully settled before I started looking for a dog, but it was so hard. Before I knew it I was on Petfinder, Adopt-a-pet, and several local rescues’ sites. But it was no good. Most dogs weren’t a good fit, mostly because of my health limitations. When a dog did look like a fit, I applied right away, only to learn someone else had gotten there before me. I set up alerts on the various web sites, so I would get an email when a new dog was posted. I applied the same day, and still had no luck.

And then last week I had to face the reality that my dog search must be put on hold. It’s spring here in Boston, which means more pain and less energy for me. That would be hard with a dog, but I would manage. But with a NEW dog, it’s too much. The first few months of dog ownership will be incredibly difficult and tiring. I need to be at my absolute best. And during the coming months I will be at my worst.

Waiting until the fall is the smart thing to do. I will feel better. I will be more capable. But it means waiting another 6 months before I even begin to search again! And at that point, I might not find my dog.

People keep telling me to hold out, it will work. If it was someone else, I would be encouraging them, too. But right now, it just feels so impossible. I want my dog, my fluffy ball of love, and I don’t want to wait any longer. It’s been 2 years. Will I ever become a dog momma?

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Why am I having flashbacks?

April 11, 2017

Something happened the other day that scared me, and it finally occurred to me that I should talk to you guys about it!

I’m keeping this short and to the point.

For several years now, from time to time something will trigger me to very strongly remember a medical experience. The memories are strong, but they’re just memories.

Then the other day, it wasn’t just a memory. It’s what I’m guessing is called a flashback. I wasn’t confused. I knew I wasn’t in the doctor’s office. I felt like I was there. I could see the nurse standing over me. I could feel my arm outstretched as she looked for a vein (while in real life it wasn’t stretched out at all.) And I got all of the same symptoms I’d had at that time – the dizziness and jumpy vision among others, all while I knew it wasn’t real, it was a memory or something. Each flash was short, but then it would come back (the trigger remained for a while.) As soon as the trigger was gone, I felt fine. Shaky and confused, of course, but fine.

Afterwards, I figured out what triggered this. But WHY was it a flashback?

For years I have assured people I don’t have PTSD. I’ve read the descriptions many times and I don’t have it. But maybe I have something else?

I don’t have a therapist and I won’t have one any time soon. After all, this only happened once. And therapists are expensive. And my past therapy experiences weren’t good, so it’s not like I’m feeling like one will help me.

But the thing is, I want to know what’s going on. A label might help, because then I can look into ways to prevent it, or at least ways to handle it if it happens again. Coping mechanisms.

Has this happened to you? If so, what caused it? What do you do about it? Please let me know, so maybe we can learn from each other!


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.


Stairs mean I’m not welcome – even if you disagree

March 28, 2017

Last night I went to an event and I arrived to find that the only parking was down the street, and the entrance had 3 stairs. Are you kidding me!?!

This is far from the first time, but I admit it was more surprising than usual. After all, this event was big on promoting inclusivity. Apparently that covers a lot of minority groups, but not those who are disabled. I was lucky I was able to do those stairs last night. Some days I can’t. And what about everyone else who can’t? They would have shown up, only to have to turn around and go home.

I remember going to my 10 year high school reunion and arriving to find a flight of stairs. I was pissed. I almost turned around and went home. I was in so much pain that I had almost stayed home in the first place, and now stairs! They were basically saying that no one who had developed health issues that limited their use of stairs was welcome, not to mention our classmate with cerebal palsy who was in a wheelchair all through our school years together. WTF, organizers?! I know she wasn’t in your “cool” circle but that doesn’t make her any less a part of our class!

I said something to the reunion organizers at the time. Now our 20 year reunion is coming up. I should probably say something again, just to be sure. Is this really so hard?

Last night I said something, too. The organizer immediately tried to point out a tiny back door that of course I hadn’t known existed. I told him, “If there’s no sign, it’s not accessible! If there’s no parking, it’s not accessible!” Because if someone can’t walk far, they can’t get from that parking lot to the building. And how is someone supposed to know to come around to the back door? Never mind not everyone can walk that far. And I’m not sure the path is wide enough and even enough for a wheelchair. And it’s not lit. So yeah, really not accessible.

And the truth is, there was a sign. There was a big, huge, blatant sign: “Disabled People Not Welcome!” That’s the sign I saw when I looked at those stairs.

Would you go to an event that had a sign saying “No Jews” like the signs my grandparents literally saw years ago? How about a sign saying “Whites Only” with a door for racial minorities around back? No? If those aren’t ok, then why does our society feel it’s ok to have figurative “Able-bodied Only” signs? They’re everywhere, and I’m completely fed up. THIS IS NOT OK!!!

The one bright spot was that at the end of the event, I mentioned something to the other participants. It was disheartening that they hadn’t noticed something, but at least their response was better than the organizer’s. They didn’t try to justify anything. Instead, they immediately started brainstorming where next month’s event could be held that would be accessible.

That made me happy. Then again, the bar has been set super low. We need to raise it, because no one should be able to get away with that attitude unchallenged.

How do you handle these kinds of situations? Please comment!


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.


What is that ghost pain?

March 3, 2017

My physical therapist kept asking “Does anything hurt?” It was a good question, but I had no idea how to answer.

I felt pain that I knew was pain, and then I felt other pain that wasn’t real. It wasn’t in my head, exactly. It was more like my foot had fallen asleep, but instead of pins and needles, it hurt. And that spot on my leg. And my shoulder.

I have had so much pain for so many years, I’m good at ignoring it. Then when someone asks if I’m in pain I need to stop blocking it out, and it comes rushing at me all at once. PAIN!

This took it to a different level. I had acknowledged my pain, but by focusing on every movement, every massage, and trying to determine if it was causing more or less pain, I was too focused. It gave the impression that everything hurt. But there were different kinds of pain, and some were more “real” than others.

This isn’t the first time this has happened. But since I was lying on the massage table for a while, I had plenty of time to think about while I tried to figure out if that pain in my back was real pain or this ghost pain. And did my ankle really hurt, or was that more ghost pain?

I wonder if I’ll ever find a way to explain this to someone who hasn’t experienced it? “You see, there’s real pain, then there’s this shadow of pain that can pop up anywhere….”

Have you experienced what I’m talking about? If so, do you have any idea what it is???


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