Should I tell my doctor the truth?

September 15, 2016

Oh my, that headline could apply to so many situations! In this case, I’m talking about test results.

It happens a lot when you have fractured healthcare. Instead of one central system, each img_20160915_110637doctor’s office/hospital network uses their own database. That means that I’m often the one responsible for sharing information. Sure, every specialist sends test results to my primary care physicial (PCP). But they don’t send results to each other, and my PCP doesn’t send results to them.

Which is why I now find myself in a sticky situation. I try to be honest with my doctors. I try not to exaggerate too much about my exercise habits (or lack thereof.) I do it because I know it’s super important for them to have all relevant information. But right now I really don’t want to.

A couple months ago my PCP adjusted my thyroid medication. I wanted to try a higher dose to see if it helped my symptoms. He ran a blood test and it was borderline – the numbers were ok and didn’t suggest that I needed a change in dose, but they also didn’t show that a change in dose would be problematic. My naturopath wasn’t convinced. She thought that my results showed I shouldn’t increase the dose. Lucky for me, she wasn’t the one writing the prescription. My PCP wrote the new script and I started it immediately.

6 weeks later it was time to repeat the bloodwork. And damn, the numbers weren’t great. They were out of the lab’s “normal” range. Based on the research I’d done, I knew I might need to lower my dose, but I also knew that a lot of patients feel their best despite having numbers like these, so a change might not be completely necessary.

My PCP, who I love for this very reason, asked about my symptoms. I wasn’t showing any symptoms of being hyperthyroid. I know to watch for them, because that would be bad. On the low end, I’d feel anxious and jittery. On the high end, I’d be at risk for a heart attack. So yeah, you want to catch it at the low end. And I haven’t had any of those symptoms, despite test results that show I could be borderline hyperthyroid. Since he mostly doses based on symptoms, he said to keep it as is, for now. But we’ll change it if I show any symptoms at all.

So what’s the issue, you might ask. Well, the issue is that the practitioner I see the most frequently, and who I work with most closely, is my naturopath. Given her reaction to previous test results, I know she’ll want me to change my medication dose when (if?) she sees these. And she won’t be entirely wrong.

I worry about all of the things she’d worry about. Being hyperthyroid is bad. It will raise my risk for all sorts of problems. And on top of that, I need all of my systems to work together. I need to make sure I don’t strain my adrenal glands or cause other problems. But at the same time, I want -no, I need – to feel as good as possible on a daily basis. I can’t feel crappy now just because it might prevent some hypothetical problem down the road.

Or can I?

And this is where I’m stuck. I know that I should share these test results with my naturopath. She can’t force me to do anything. She can’t change my prescription. But she can reasonably point out all of the reasons that I already know a change might make sense, reasons I don’t want to be reminded of. So maybe that’s the real problem. I don’t want the reminder. Because I feel that I’m taking a risk, but one that’s worth taking.

If only I felt more confident in that decision.

2 Comments | Decisions, Frustration, Rants, Symptoms | Permalink
Posted by chronicrants

Sugar, fat, and pain

September 7, 2016

Chocolate! Potato chips! Cookies! Pizza!

I’m in pain, and I want sugar and fat and I want it NOW!

But why?

To some extent, I know that I want sugary and fatty foods more when I’m in pain because they’re comforting. I’ve read the research about how sugar affects the brain in a similar way that heroin does. I get it.

And when the pain is especially bad, I allow myself to eat more junk than usual. So maybe it’s also a bit of that association. Those are probably why I wanted sugar this morning.

But now it’s different. Now it’s a need more than a desire. Like when I crave a hamburger and then a few hours later I get my period. My body is saying: you’re about to lose blood, you better eat some iron. It makes perfect sense. But I feel that same kind of craving right now for fatty and sugary foods and I can’t imagine why.

Are my energy reserves low from fighting the pain? Is this my body’s way of telling me I need to beef them up? (so to speak….) Is is something else along those lines?

I’ve learned a lot about my body in recent years, but this is one mystery I don’t know how to solve. It will have to wait until later though. Right now, I need to go forage in the kitchen….

What about you? Do you experience these kinds of cravings? What do you think causes them? How do you handle them?

2 Comments | Expectations, Pain, Symptoms | Permalink
Posted by chronicrants

P.A.I.N.

August 31, 2016

It’s one of those days. Well, it’s one of those weeks, actually. For now. Because of course I don’t know how long this will last. It could be months or years.

The thing about chronic pain that a lot of people don’t understand is that it isn’t necessarily consistent. For me, I have different kinds of pain to different degrees in different parts of my body at different times.

Maybe one day my knees are brutal but the rest of me feels ok. And another day my toes hurt so much I can hardly stand up and my wrists are just sore. Maybe my knees are on fire while my neck is throbbing. Some of it is predictable and some of it isn’t and that’s just the reality.

For several years now, the variation has always fallen within a certain range. My toes hurt up to a certain point in a certain way, my knees hurt up to a different point in a different way, etc. I got used to that. I knew how to handle that.

I don’t know why, but something changed. My knees have hurt a lot more lately, and in a different way from before. There’s a sort of stabbing pain followed but what feels like a loss of structural integrity, though I usually manage to not fall but shifting my weight briefly.

Even worse, my wrists have started to hurt in an all-too-familiar way. This is the pain that I had 24 hours a day, 7 days a week for over 9 years. It isn’t quite as severe as it used to be, but it’s the same type of pain. Occasionally (maybe 1-3 times per hour) it gets worse for a few minutes. The only thing that ever helped was a medication that I’d rather not take, but I will if this continues. But it did help. That was 15 years ago (the first time I took it) and 7 or 8 years ago (the second time I took it.) It’s only been about a week, so I’m hopeful it will go away.

Maybe it’s the weather? Maybe I did something to trigger it? Is it a coincidence that my knees and wrists got worse at the same time? Are they related?

All I know is that I’m in a scarier type of pain than I have been for a while now. That’s the thing: it’s emotional. The pain in my knees is bad, but I can walk through it. The pain in my wrists isn’t much worse, but for some reason it’s limiting what I can do. And for many years it limited my ability to write, to type, to cut my meat, to brush my hair, to wipe my ass…. I’d understandably rather not go back to that place.

So now I wait. I wait and hope. I hope that the pain diminishes.

Because I accept that I will be in pain, but I don’t want to be in this level of pain, in this type of pain, in this part of my body.

3 Comments | Expectations, Frustration, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why I prefer the virus

August 25, 2016

A few days ago I wrote about some symptoms I was having, but I didn’t know why. Now I know.

When I felt fatigued, brain fogged, and just “off” for the first couple days, I assumed I was just having “bad” days. After 4 days I was concerned. What if this wasn’t just my typical “bad” days? I wasn’t getting better. What if this was a long-term issue? That happens all the time, after all. I get a new symptom, or an old symptom becomes worse, and it stays that way for months or even years. Crap crap crap!

On day 5 I was fed up and I emailed my Naturopath. It was a Sunday, but I felt better having reached out anyway.

The next morning she wrote back: there’s a virus going around with my exact symptoms. I wrote back that I don’t have any other virus-like symptoms. No runny nose, sore throat, or upset stomach. She assured me this is what the virus is. Extreme fatigue. I decided to accept that. And then something interesting happened.

I rested.

For the first few days I had tried to continue my normal life. That means trying to “be productive” and “get stuff done.” Sure, I might be doing a lot less in a day than a healthy person, but I was doing it nonetheless. I was working on blog posts for this and another site, I was thinking about doing my laundry (though no actually doing it,) I was trying to clean up around the apartment. But I was failing at all of it. I just couldn’t manage.

Then I spent a couple days not doing anything and feeling guilty about it. I’d accepted that I needed to rest for a few days, but there were so many things I should be doing. I even went out briefly one day to get a prescription and some groceries. I felt bad about canceling plans with friends. It sucked.

Once I was told I had a virus, though, I rested without guilt! It was lovely! I watched tv, crocheted, listened to audio books, and read. My only responsibility was to keep myself fed, and I did that with simple meals: eggs, leftovers from the freezer, sandwiches. I washed dishes only as needed.

If I’d rested from the start, the virus probably wouldn’t have lasted so long. It was 8 days. Today is the first day I feel 100% over it. But I probably would have felt better days ago if I’d only rested from the start.

The thing is, when you have chronic illness you can’t rest every time you feel bad, because you’d never do anything. Even when my fatigue was at its absolute worst, I did stuff. Or I tried to do stuff. Or I felt guilty about not doing stuff. Because I felt that way every day, so pushing through was the only way to get shit done.

But a virus is different. It’s temporary, and we know it’s temporary. Resting with a chronic illness, only feels good in the moment, but resting with a virus means overall improvements in health. It’s worth resting if it means I’ll get better, right? So I rested.

And on top of that, there’s the sympathy! Family and friends were checking on me every day. That doesn’t happen with chronic illness. And I get it. Checking on someone every day for a week is one thing, but you can’t check on someone every day for the rest of their life. Still, it felt good to know people were thinking about me and wishing me well in the moment.

So given the choice, sure, I’ll take the virus every time! I felt only slightly worse that usual, and in exchange….

I got to rest without guilt!

What about you? Do you feel guilty when you rest? Do you find it easier to have a virus that you know will go away? Or are you the opposite? Please comment and let me know how you feel about it!

4 Comments | Expectations, Fatigue, Healthcare, Isolation, Limitations, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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