My body and your religious beliefs

June 30, 2014

A few years ago the Supreme Court of the United States (SCOTUS) ruled that corporations are people. Yeah, no kidding. Today, it ruled that those “people” can deny birth control coverage to their employees. Yeah, again, no kidding.

If you’re not familiar with these, you can read about corporations being ruled “people” here, and you can read about today’s horrible decision on birth control coverage here. Go ahead, I’ll wait.

Welcome back. In case you didn’t read all of it, the basic idea is that health insurance in the U.S. is usually provided by companies for their employees. Yeah, that’s messed up, but it’s a discussion for another day. The federal government mandated that this health insurance coverage has to include preventative care, including things like cancer screenings and birth control. Birth control is incredibly controversial here in the U.S. (Maybe I’ll talk about my opinions of misogynistic policy-makers, pundits, and loudmouths another day.) A couple of family-owned companies sued, saying that birth control pills, IUDs, etc. could be assisting abortion (even though medical science says otherwise) and that therefore they are against the owners’ religious beliefs. They therefore believe they should not have to provide coverage that includes birth control pills, IUDs, etc. They argue that since it’s about their freedom of religion, they shouldn’t have to pay the penalties, either. And the court bought it. Or, at least, 5 male justices bought it.

The decision was written so that it was clearly meant to be narrow; it should apply only to these particular businesses and only to birth control. But we all know that the door is now open to any other business that wants to sue. And if the court rules that birth control is an “acceptable” religious objection but that pork-based pills or transfusions or whatever else isn’t an “acceptable” religious objection, then they’ll be showing preference for one religion over another. They can’t have that. So where would the line be drawn for healthcare coverage denials?

I have been railing against this ruling on Facebook all day. I am pissed off like you wouldn’t believe. In order to keep my cortisol levels from skyrocketing, I won’t get into this here today. I just want you all to be aware of this ruling. And to say that I believe this, above all else, to be true about the state of healthcare today for those who are not wealthy enough to afford care without insurance coverage:

Who should make decisions about my healthcare:

  • Me
  • My doctors/healthcare providers

Who actually makes decisions about my healthcare:

  • Me
  • My doctors/healthcare providers
  • My health insurance company
  • My disability insurance company (by denying a claim, they take away my health insurance)
  • My government
  • My employer
  • Pharmacies (for example, Walgreens now insists on calling doctors to personally verify prescriptions for opioids)

See the problem?

What do you think about this ruling? How does it make you feel? And who else makes decisions about our healthcare? Who did I forget? Please share in the comments!

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The “Is it worth it?” analysis

June 29, 2014

I went dancing! I haven’t been dancing in ages, and I hadn’t planned on going any time soon. But there was a street party and it looked awesome and I was with friends…. so why not? And when I say “street party” I mean a serious street party. A2014-06-27 20.36.49 major road was blocked off. There were spotlights on roofs and funky colors displayed on city hall. The music ranged from club remixes to motown to disco to whatever else you can dance to. There were congo lines in the street. A beach ball was being tossed around through the crowd. And the weather was cool and pleasant and I felt decent. So why not?

Well, I’ll tell you why not. Because pain. Because fatigue. Because sick body. Yeah, that.

But it looked like so much fun! So I asked myself, “Is this worth it?” And then I continued to ask myself that question every five minutes for the next 2 hours. Sometimes I came close to going home, but then I decided it was worth staying. The question wasn’t whether or not I’d feel horrible later or the next day. I knew I would. There was no question about that. But if I never did anything that made my symptoms worse, I’d never do much of anything (including typing this right now.) Some things aren’t worth the extra pain, fatigue, nausea, etc., but some are. And this was.

The "Is It Worth It?" Graph

The “Is It Worth It?” Graph

At a certain point, I knew I was reaching that point where it wasn’t worth it anymore, so I headed home. The fallout wasn’t too bad. I felt lousy the next day, but not as horrible as I’d have expected. I’m still recovering, but it’s going well. And I have no doubt: it was totally worth it!


Making the good days into great days

June 25, 2014

It’s been one hell of a week. There’s a lot I could write about, both good and bad. I choose to focus on one of the better parts of the last week.

They say old friends are the best friends. I don’t know if that’s true for everyone, but it is for me. I have a lot of wonderful friends, but the ones I’ve known since childhood are just amazing. Part of it is that we’ve known each other for so long. We’ve seen each other through sicknesses, marriages, children, graduations, job changes, big things, small things, and everything else. Part of it is that they just happen to be really wonderful human beings. And the other day we were all in the same place, at the same time.

We don’t have many reunions. It’s gotten harder as everyone has had kids. I can’t imagine how much harder it will be if more people more away, or if people move farther than driving distance. It had been over a year, and we were so excited to see each other! As my mother said when she saw the photos, “The smiles on everyone’s faces just says it all.” She’s right.

I was nervous about my health leading up to the reunion. In general I was worried about how I’d feel in the heat of late June (though everyone agreed to keep the party indoors in air conditioning if I needed it.) More specifically, as the time came, I was feeling particularly lousy. I got incredibly lucky with the weather; not only was it an unusually great June, but the days leading up to our get-together weren’t hot or humid, and the days of were good, too. That helped a lot. Still, I felt horrible for other reasons. I won’t give the full back story here (like I said, I’m focusing on the good things,) but basically there were adrenal problems that triggered all sorts of symptoms and my supplements just weren’t doing the trick.

If this had been any other gathering with friends, I would have simply cancelled. But I’d been looking forward to this for many months and I wasn’t about to miss it! So for two days I ate very little, I took extra adrenal supplements, I adjusted my sleep patterns, and I just pushed through. I felt lousy, but I hid it the best I could. Everyone knows about my health issues and they are the most supportive friends I could ask for. But just once, I wanted to have conversations that didn’t even touch on my health. So I hid how I felt. And I had a great time. I had so much fun with my friends, that I was able to ignore my aches, pains, nausea, and the rest for most of the night and the next day. I got down on the ground, I held babies, I fetched things for others, and I faked it til I made it – and it worked!

Pushing through sometimes works for me, but it’s rare. Very rare. Incredibly rare. I-can-count-it-on-my-fingers rare. But if it’s going to happen just once, I’m glad it was for those days. They were just fantastic. I couldn’t have asked for better. And I’ll be holding on to those memories as I anticipate our next reunion. Hopefully I won’t have to wait another year! And hopefully I’ll feel ok.


In between medical and clumsy

June 20, 2014

I wonder if it will leave a scar?

I suddenly wondered just how many times I’ve had this same thought in the last few years?

Oops!

Oops!

Now I’ll admit, I was never what you’d call graceful, and I certainly couldn’t dance, but when it came to my hands, I was pretty coordinated. I played musical instruments. I juggled really well. You know that trick of patting your head with one hand and rubbing your stomach with the other? I could do that without a hitch, and I switched my hands easily.

And then I started having trouble. For most of my life I was a truly horrible cook. Really. No kidding. Just dreadful. But a few years back I finally learned how to cook and I did ok. Until I started cutting myself. I’d laugh off a slip of the knife, ha ha I’m so clumsy, but when I had to throw out part of an apple crisp because I got blood in it, I knew there was a problem. There were cuts, burns, and spills. Last week I cut my fingernail off with the knife. I’m just glad it was only my fingernail! There’s some sort of disconnect between my brain and my hands these days. I can feel that it’s tied into the brain fog, but I can’t think it through well enough to get beyond that. That figures.

Last night I had meat cooking in one pan and veggies in another. I was doing really well with the cutting. Maybe my cutting success made me let down my guard? All I know is that I reached for the handle of one pan, and somehow pressed my finger into the edge of the other pan and it took a second longer than it should have to realize what I’d done and to pull my hand back. It hurt, but I didn’t think too much of it until a few minutes later when I noticed the skin peeling away. It hurts a bit, but it doesn’t look too bad. Mostly, it just feels bad mentally, because I know how it happened.

Then again, thanks to the brain fog, I can’t remember exactly what caused the other scars on my hands (though I’m sure it’s all related to kitchen brain fog) so I’ll probably forget this one too!


What about the infectious diseases?

June 18, 2014

It started with a Twitter chat about different thyroid meds. Then we were emailing about hypothyroid. It morphed into conversations about our families, our hometowns, and the other stuff of life, but it always came back to health stuff. And then the other day Miss Diagnoses emailed me a transcript of an interesting talk about tick-borne illnesses and how their symptoms often masquerade as autoimmune diseases. Hmm. There’s something familiar about that!

I read the 21 page transcript, then I visited the doctor’s web site. I ordered his book from my library system and will pick it up next week when it arrives at my local branch. I considered trying to visit this doctor, without insurance, 5 hours away. And then I checked myself. How many times have I traveled down a similar path?

There are so many things that could be the cause of my health problems. There are so many things that could be contributing factors. It’s hard to know which to pursue. But every time I see a potential answer to the big question, I grab hold of it like a life jacket in the middle of the ocean. Then I remember that there’s a boat nearby. I’m just not sure if I can manage to swim to it, or if it might have a hole in the bottom. Because if I see the wrong infectious disease specialist, I might be told I don’t have any infectious diseases even though I do. Or I might be told I need treatment that I don’t need. Or I might be given antibiotics for 1 month when I really need them for 1 year.

There was a time when I believed, as so many people still do believe, that if you get sick, you see a doctor, they find the problem, they treat you, and you get better. But I know better now. I have literally dozens of stories to disprove that neat little theory. Take last fall. I saw a sleep doctor who said there was nothing he could do to help me. He gave me a referral to a sleep psychologist. Great. Then I saw someone else in his practice (the doctor I’d originally been trying to see anyway!) He ordered tests that the first doctor didn’t even suggest. He suggested a medication change that the first doctor ignored. I ended up with a sleep apnea diagnosis that the first doctor never considered. And he prescribed a CPAP machine that I was clearly never going to get from the first doctor. The CPAP has made a huge difference for me. I sleep so much better, and I feel more clear-headed. Some nights I haven’t used it all night for one reason or another (an ear infection, congestion, a weird dream that caused me to take it off in my sleep) and there’s a noticeable difference the next day not only in my fatigue and energy levels, but also in the clarity of my thinking. More than that, if untreated, sleep apnea can be dangerous. One doctor diagnosed it. Another never considered it. And that was in the same practice.

I can give similar stories in the fields of endocrinology, rheumatology, internal medicine, physical therapy, psychology, dentistry, orthopedics, and probably others that I’m not thinking of right now. So why should infectious disease or any other specialty be any different?

And yet I know that I need to pursue this. And visiting an supposed-expert 5 hours away for many hundreds of dollars just isn’t the most realistic approach. I need to find someone local, and I really won’t know if they’re any good until I try them. And even then, I don’t know enough about the field to be sure. But I’ll try, because what other option is there? Can I really risk leaving this stone unturned?

I started a list tonight of new paths to pursue, new potential pieces of my health puzzle. Maybe this isn’t one of them. But there’s no way to know until I try.

If you know of a great infectious disease specialist in Boston, please let me know in the comments or email me at msrants at gmail dot com ! And I’d love to know about your experiences with infectious disease diagnoses and research.


A little petting goes a long way

June 17, 2014

It wasn’t hard to see the pattern: I would pet an animal, usually a dog, and feel really happy afterwards. It’s probably been that way my whole life, but I’ve been noticing it more over the last few years. I think that as my health has gotten worse and PoochI’ve been leaving the house less, the joy of being around pets has been more pronounced.

The guy on the right is awesome. He almost always makes me feel better. But I don’t get to see him very often. (And yes, there’s a dog under all that fur!) I need to find a way to pet dogs more often.

Some days I don’t leave the house. Other days I just drive to a doctor appointment or do the grocery store. But when I’m able to walk around my neighborhood, I often see people walking their dogs. Like a little kid, I walk up to strangers and ask to pet their dogs. I’m friendly, and I tell the owners how beautiful/cute/sweet/smart their dogs are, so they’re happy to chat while I pet. This helps, but it’s not enough.

I’ve been thinking that since I can’t care of a  dog myself, maybe I should find a way to volunteer at a shelter. With my health issues, of course, I wouldn’t be a very reliable volunteer. But when I saw dozens of cute pooches at the Pride Parade this weekend, I just knew I had to try. Businesses of all kinds set up booths at the festival that follows the parade. Several sell gear for cats and dogs (rainbow bandanas, rainbow leashes, etc.) There were also a couple of nonprofits that work with animals. I was familiar with one of them, so I asked about volunteer opportunities. It might be a good fit.

I’m still nervous about trying to commit to something when I can never be sure in advance which days I’ll be able to leave the house, but it’s sure with trying. Because after petting those dogs at Pride I sure felt a lot better!


All rainbowed up and no place to go

June 13, 2014

One thing about chronic illness is that I miss out on a lot of events. You name it, I’ve missed it: weddings, dinners out, birthday celebrations, medical appointments, support groups, parties…. Illness doesn’t discriminate. Sure, when there’s an especially important event, I’ll try to rest up in advance, but it’s not like I always have a choice.

This weekend, I’m wondering if I’ll be attending Pride events. For those who don’t know, LGBT Pride is the biggest holiday2014-06-13 17.03.12 of the year. It’s like queer Christmas, Chanukah, and birthdays all rolled into one. It’s something I look forward to for months. As I type, my fingernails are painted in rainbow colors. My buttons and mardi gras beads are ready. And I’ve been feeling crappy all week. Because my illness doesn’t care about Pride. It just acts up whenever it wants to.

Last year there was a hurricane coming up the coast and a bunch of us went out to the Dyke March anyway in the drenching rains. We got soaked, but we were glad we went. The next day was warm and sunny and the Parade was a ton of Rainfun. As usual, I was too tired to go to any of the parties at night or on Sunday, but that was ok, because I went to my top two choices: the Dyke March and the Pride Parade.

This year it’s raining again. It’s not as bad as last year, but it’s not exactly a light rain, either. Check out the view from my window. If I was having a good day, I’d just suck it up and go. But do I really want to do that when I’m already feeling so crappy? No, not really.

Tomorrow is supposed to be cool but with a very high dew point. Which means I may not feel up to going to the Pride Parade either. Plus, just to add in another obstacle, the closest subway station is under construction so I’d have to do even more walking. Oh yeah, and there’s a 50% chance of rain. Ugh.

So maybe I’ll just go to the party on Sunday. And that would be nice. But that’s not what I really want to do. I want to go to the March tonight and to the Parade tomorrow and I don’t want to have to wait another 12 months for my next chance. Plenty of people will skip out because of the weather and that’s their choice. But it wouldn’t be mine. I’ve gone out to both the March and the Parade in the rain before, and I want to do it again. I want it to be my choice, not my body’s. And that’s why I’m feeling so pissed off right now.


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