The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.

 

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When triggers feel absurd

August 18, 2017

Some triggers seem reasonable. If I fall and land with any pressure at all on my hand or wrist, my wrist pain fill flare for days, weeks, or months. If I exercise too much, my pain and fatigue will flare. Some triggers make sense but piss me off: like eating lunch.

Yes, eating lunch is a big trigger if I don’t do it right. As it turns out, eating and digesting food takes a lot more physical energy than I would have every guessed back when I felt healthier.

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If I eat standing up, I’ll feel sick. If I eat too fast, I’ll feel sick. If I eat at the wrong time, I’ll feel sick. If I eat and don’t rest afterward, I’ll feel sick. And “sick” can mean a few different things.

Take Wednesday for example. I had a doctor appointment at 1:40. I needed to leave by 12:40. But I wanted to make a quick stop at the library on the way, so I figured I would leave at 12:25. I usually eat lunch around 1pm, but instead I ate at noon, and I ate quickly. The second I finished eating, I ran out the door. Oops. I ate fast *and* didn’t rest afterwards. The nausea and fatigue set in fast. I was in pain. I felt horrible. But I had to get to that doctor appointment.

I pushed through. I didn’t have the strength to multitask, so I didn’t turn on the audiobook I wanted to listen to. I focused. I managed to drive safely but miserably. I went to the bathroom before I checked in, and a lot of my lunch left my system – not properly digested. Then I asked to wait in an exam room instead of a waiting room. Thankfully, they had a room available and I was able to lay down.

After laying down for a bit I felt much, much better. The nausea was gone, the fatigue was improved. Still, I took it easy the rest of the day. My appetite didn’t come back until the following night.

I know that lunch wasn’t the only problem, just the final trigger. My stress about what’s happening right now (Nazi marches!?!) and the weather (very humid) primed me. It was lunch that set me off.

It pisses me off that I can’t eat an early, quick lunch and then run out the door. But then, I also should have known better. I knew that could be a problem, but I did it anyway.

Still, I feel good about one thing: instead of pushing through and trying to “brave it out,” I asked to lie down. And it made ALL the difference.

Learning to ask for what I need has been invaluable. I don’t always do it, but when I do, I feel good about it. Now I just need to find ways to eat lunch before a doctor appointment that don’t have such terrible results. (And yes, eating after the appointment would have been just as bad – I have a very narrow window to work with.)


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.


The skill I wish I didn’t need: removing bloodstains

October 15, 2016

I remember the night, around 3am, when my mom taught me how to remove bloodstains.

I got a lot of nosebleeds as a kid. So did most of our family. Luckily, we grow out of them as we get older, and I only get a half dozen or so every year now. Yeah, only.

Some nosebleeds came during the day, and some at night. Usually I woke up fast, since it affected my breathing, but this time I didn’t, and blood got all over my pillowcase. A light sleeper, my mom heard the running water down the hall, and came to investigate. She found me trying to wash the blood out. Instead of doing it for me like she had in the past, she decided it was time I learned how to do it myself, so she showed me what to do. Then she put a clean pillowcase on my pillow and I went back to sleep.

Fun times.

These days, I sometimes still use that skill, but these past two days I’ve used it far too much.

Thanks to PCOS (polycycstic ovary syndrome) my period is always an unpredictable adventure. Sometimes I don’t get it for a year. Then I get it too frequently. Right now I only get it with the help of hormones, but the hormones make me very sick. So the plan my doctor and I created is to only take them for 1 week every three months. That way I’ll bleed (my endometrial lining was building up too much, so unfortunately I can’t just avoid it altogether) but I won’t have to get sick from the hormones all month, every month.

I timed it carefully. I need to allow up to 2 weeks of feeling crappy – 1 week for the hormones and 1 week for my period. I waited until after the pooch left, then took them immediately, because I need my period to be over before I go on a short but much-anticipated trip next weekend with my girlfriends (our first girls’ weekend together!)

It was a good move, because I’m miserable. By the last days of taking the hormones I was fatigued, nauseated, and just feeling lousy, plus moody. Then after 2 days off the hormones, during which the crappy feelings continued, I got my period. And it was heavy. Very heavy. And it still is.

And that’s why in just the past day and a half I have washed bloodstains out of 3 pairs of underwear, 1 pair of pants, and 1 bedsheet. And that’s why it’s noon and I am sitting in my pajamas with no plans or desire to leave the house today. I don’t even want to deal with showering.

It’s a gorgeous day out. The New England fall colors are lovely. Normally I would be outside as much possible. But I’m bloody and crampy and just feeling blah. I’m grumpy  and irritable. I’ve had to wake up in the middle of the night two nights in a row to deal with pads full of blood and various bloodstains. And I curse the biology that makes this happen.

But in a few days this will be over, and I will have 3 blissful months with no period, and only removing my more mundane bloodstains – the ones from random scrapes and cuts, mostly from my own clumsiness.

Won’t that be nice?

Is it just me? Do you have unfortunate bloodstain-removing skills also? Please share in the comments!


Many possible causes, no answers

August 20, 2016

When someone who’s generally healthy feels bad, they can usually tell you why: they drank too much last night, they haven’t been sleeping enough, they’re under a lot of stress, they’re getting sick.

When you have a chronic illness, it isn’t always so clear.

I was doing unusually well over the last few weeks. I wasn’t feeling as good as I do in the fall and winter, but as far as summer goes, my pain and fatigue and other symptoms weren’t too bad.

Then I started feeling unusually bad. I was more fatigued. I was depressed. I was in more pain. The symptoms ebbed and flowed but were always around. What happened?

I weighed the possibilities:

  • Maybe it’s the weather. But I’ve been staying in air conditioning. And it’s hot and humid, but not nearly as bad as it was last week. There’s no reason I should feel so much worse now.
  • Maybe I’m getting my period. Thanks to my PCOS it’s entirely unpredictable and rare. That was an option for a couple days, but I didn’t get it (and if I was going to, I would have within 2 days of the start of the symptoms.)
  • Maybe I got glutened. After all, it started just a couple hours after lunch at a restaurant. The symptoms weren’t as bad as a typical gluten reaction, but maybe it was the tiniest amount of contamination. This seemed possible at first, but that was 4 days ago. I would be feeling better by now.
  • Maybe it’s some new, unknown thing. That happens sometimes. Unfortunately, there’s no way to know.
  • Maybe I’m getting sick. That would make sense. My body could be working extra hard to fight off some tiny little bug that most people wouldn’t even notice.

And of course, I don’t have an answer. Except for a quick trip to pick up a prescription and some groceries yesterday, I haven’t left the house in 4 days. These days, that’s a lot. I’ve been going out most days, even if it’s only briefly, and I’m rarely home for more than 2 or 3 days at a time.

The weird part is, I have no desire to go out or do anything. I know there’s stuff around the house I need to do, and I want to do it, but I just can’t bring myself to even get started. I’m not depressed, I just don’t have any spark. I’m too tired. I’ve been sleeping well enough, and I feel ok when I wake up, but my energy just remains flat. I think I’m going ok and I try to walk around, and my foot hurts too much. Or my knee hurts. Or something else. My stomach bothers me occasionally, not in any ways I haven’t felt before, but this time there aren’t any reasonable triggers. The pain feels like it’s coming from the humidity in the air, but what about the fatigue and stomach issues? Maybe those are too?

The frustrating part is that I don’t know, I can’t know. I won’t have any answers. Even when I eventually feel better, I probably won’t know why this happened. Just like when I have good days, I don’t know what causes them. It’s a big, frustrating mystery. And it affects my entire life.


It’s about more than just pee

June 5, 2016

There’s political turmoil in the U.S. right now around bathroom use. Yes, you read that right. Transgender folks want to use the bathroom that corresponds with their gender identity and conservatives want them to use the bathroom that corresponds with the gender on their birth certificate. While I have some very definite opinions on this issue, there’s one aspect that strikes me as being more relevant for those who have certain chronic illnesses and other medical issues. Or who just poop when they’re not at home.

You see, the argument from transgender folks and their allies is that this is about a simple right: the right to pee. And it is. But it’s also more than that.

I see a lot of these memes, videos, and arguments. I share a lot of them on social media, too. After all, I fully support everyone’s right to pee in a comfortable, safe space. But the thing is, isn’t it about more than just pee? And I’m not just talking about having a private place to pick a wedgie, fix your hair and makeup, or take off those uncomfortable stockings.

For me, public bathrooms, and even private ones, were about more than just peeing. I had around 20 years of undiagnosed Celiac Disease and other food intolerances, so you can imagine what bathroom use was like for me.

I have an unusually strong bladder. I can often go for 4, 6, even 8 hours without peeing. But when I got *that* feeling, there was no choice.

There was the time I was on the highway, stuck in traffic. I got *that* feeling. I knew it was bad. I looked at the stop-and-go traffic and I wondered if I would have to have diarrhea in the grass on the side of the highway. Thankfully, just in time, I got off the road, into a motel parking lot, and found my way to a bathroom. Thank goodness!

Then there was the time I was seeing a show on Broadway for the first time. I was so excited! Walking to the theater, I got *that* feeling. We rushed to the theater, thinking I could quickly use the bathroom, but the doors weren’t opened yet and there was a line to get in. I rushed to the hotel next door, but a guest card was needed to use the bathrooms. I asked at the desk, but they wouldn’t let me use a toilet. I went back to the theater. The doors were open and my mother was almost to the front of the line. I was desperate. As soon as I was through the door I ran to the bathroom. The line for the ladies room snaked down the hall. I ran to the front and asked if I could cut the line. A woman in front said yes immediately, and others followed her lead. I hate to think what would have happened if she’d said no. Maybe she saw the desperation on my face. Maybe she noticed that I was turning a bit white, or even green. Maybe she was just a compassionate person who always helped others. Whatever it was, I was grateful. I ran into the next open stall, and sat down as I felt what seemed like everything I’d eaten in a week leave my body. I was there for a long time. I eventually made it up to my seat, and was still feeling a bit ill. Before the show started, I got the feeling again. I ran back to the bathroom. It was close to curtain, so there was no line. I sat there alone, in the quiet, grateful for the toilet. I got back upstairs just as the opening number began, thankfully feeling much better.

I’ve had more incidents like this than I can count. There have been times I didn’t make it to a toilet in time. Thankfully, those were not in public places. But they could have easily been.

The point is, sometimes it’s about more than just peeing. I’m cisgender, so obviously this particular issue of which bathroom to use doesn’t affect me directly. (It does affect several friends, many acquaintances, and countless people I don’t know personally but who should obviously have the same rights as everyone else.) Still, I can’t help feeling a twinge at all of the talk about how “it’s just about peeing.” No it isn’t! It’s also about pooping! Don’t forget the pooping!

I want to shout it at the tv, at my computer screen, and at every person who says, “it’s just about peeing.” I get their angle. They want to eliminate the politically-motivated distractions being used to force the issue. But let’s not erase the very real problems that so many others are dealing with. It’s about pooping too!

There are certain things all humans do. I get that most people don’t want to discuss them all. But really, why can’t we talk about poop? If we can wipe a baby’s butt, clean out the cat’s litter, and pick up the dog’s poop from the street, surely we can recognize that trans+ folks will need to occasionally poop in public too. And when they do, they need to be able to do it in a safe place.

Because if I hadn’t had a safe place in that theater, it could have been a very messy experience. And no one should have to go through that.

So for all of you out there with IBD, IBS, Crohn’s, Celiac, or any other digestive issue, and for those who simply need to poop, I support you. Let’s win this thing! #itsaboutmorethanpee


How little pain should I expect?

May 5, 2016

So many doctors have made it clear: I shouldn’t expect to ever live a life without pain again. Ok, I’ve accepted that. But lately I’ve wondered: should I raise the bar for my own pain relief expectations?

I’ve been watching friends, acquaintances and strangers online dealing with their chronic pain. They complain about their pain, while still trying to live somewhat normal lives. They complain that they can no longer go jogging, work two jobs, carry heavy loads, or climb a lot of stairs. At first I’ve thought, “well of course you’re in pain, you shouldn’t expect to still be able to do that.” But then I thought, maybe they should. Maybe I should.

Obviously there are limitations. I’ll never be able to jog. Or work two jobs. Or for that matter, carry heavy loads or climb a lot of stairs, either. But maybe I should be able to do more than I’m doing now without feeling so much pain.

Some days it isn’t that bad. It’s nothing more than a nuisance. But then, I never try to do anything pain-inducing anymore. I don’t think about it. I simply haven’t done those things for so many years that it never crosses my mind to pick up something heavy, reach out my arm at a certain angle, or sit still for a long time. I shift my position constantly without realizing it, because over the years I learned it was necessary and I did it so often that it became automatic. But maybe I should be able to sit still for longer without feeling pain?

There aren’t a lot of options. I don’t like using prescription painkillers because they upset my stomach and it doesn’t seem worth it. I’ve tried NSAIDS, steroids, Plaquenil, Cymbalta…. it’s not like there are a lot of prescription options left. I try nonprescription things too, mostly through my naturopath.

But today I opened the door for a new possibility. I registered for medical marijuana. The United States is a funny place. I know a lot of you aren’t in the U.S. so basically, marijuana is illegal on a federal level, but some states have made it legal. That means that technically you could get in trouble for having it even in those states where it’s legal, but chances are the feds won’t bother you unless you’re a big player of some sort. On top of that, our current federal government has specifically said they’d lay off. It’ll be interesting to see what happens after the next election. But I digress….

As I was saying, I registered for medical marijuana today. I paid $200 to see a doctor, because none of the doctors who do this are covered under insurance. In a few weeks I should have my license from the state. Then I can buy medical marijuana, also called cannabis, but going to a dispensary (there are about a half dozen in the state so far.) I learned about the different strains. It’s possible to get strains of cannabis that help the pain, nausea, or other symptoms without getting you high. That’s what I’ll be aiming for.

But what’s my goal? When I walked in the door today thinking that I wanted to use it for the days when the pain is the worst. The thing is, the people I spoke to there acted like I’d be using it more often to help the pain more often. After all, hadn’t I just said that I was in pain all the time?

I have no intention of using it all the time, of course. But maybe I could use it more, so that instead of only using it on the worst days, I use it on all be the best days. Because shouldn’t my goal be to feel as little pain as possible?

Obviously I have to wait and see how I feel once I start. Maybe I’ll want to use a lot of it, maybe not. I’ve used it before, so I know that I’ll at least want to use it for nausea and digestive pain. It’s a miracle for that. But what about my joints? If it helps my joints, should I try it? And I learned today that it can help fatigue. That could be a life-changer!

I don’t expect this to cure me. I don’t expect to be pain-free. I don’t expect to walk 5 miles or lift a 5-year-old. But maybe taking a swim and cooking dinner the same day should be a reasonable thing to expect?

How do you set your expectations? Our abilities and symptoms are all so different, but we all have the same problem of figuring out what limitations are reasonable and what aren’t. How do you figure it out? Please comment and let me know!


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