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!

5 Comments | Decisions, Gastrointestinal, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Needing a change

September 21, 2016

I’m in a rut. I guess that’s to be expected since:

  1. My health limits what I can do.
  2. I’m totally a creature of habit.

Still, it’s bugging me. A lot. I used to travel all the time. It was rare that I was in my town for more than 2 months at a time. I’d go away for weekends, or long weekends, or week-long trips. I traveled locally, across the country, and abroad. And I miss it.

I did other stuff too, but travel was a great way to break out of the work-home-work-home-work-home-socialize-work routine.

So now I’m wondering about traveling again. I’ve written about it before, but this time I think maybe I should try it. I don’t feel quite ready, but I have a feeling that I never will.

I’m trying to decide where to go. My first choice is Sweden. I was planning a trip there when I became ill, and I’ve always wanted to follow through on that. With any luck I could use my frequent flyer miles and at least cover the airfare.

Or I could visit a friend in the U.S. That would be a lot easier and definitely less expensive. The problem is that the people I most want to see are in places I don’t particularly want to go. Either I don’t have any interest or, more often, I’ve already been there so many times. I’d rather go someplace new and different. After all, the point is to make a change, right?

I’m going to make other changes, too. I hope to move in the near future (I’ll let you know when that gets worked out.) And after that I’m going to try getting a dog again, and this time I’m hoping it works out better. But then what? I need to do something else. And I don’t know what it will be.

I want to get out and meet new people! But I’m an introvert, and going to events full of strangers feels unpleasant and exhausting. Plus, they’re so often in the evenings, and by then I’m not really up to going out. Or they’re on weekends and involve things I can’t/don’t want to do like kayaking, eating out, hiking, etc.

I need to find the right group of people to hang out with. And start doing new things. I need to get out of my comfort zone.

What do you do to get out of your comfort zone? Do you travel? Where do you go? Do you meet new people? If so, how? Please comment and give me some ideas!

4 Comments | Decisions, Fatigue, Frustration, Isolation, Medication, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

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

What if this symptom is different?

August 16, 2016

How am I supposed to answer the question, “What causes X symptom?” The thing about the kinds of autoimmune illnesses I have is that the symptoms can vary a lot. My Hashimoto’s leads to fatigue and difficulty adjusting to temperature changes. Someone else with Hashi’s might not have those symptoms and might instead be overweight and have no eyebrows. And I have multiple illnesses like that.

Even better, some of the illnesses have overlapping symptoms. The pain could be from Hashimoto’s, Celiac, or connective tissue disease. So when the doctor asks, “What’s causing the pain?” I just shrug. Sometimes I can tell. Sometimes I can’t. So be it.

But this also means that when there’s some new symptoms, I just assume it’s because of these illnesses. I make that assumption even when I probably shouldn’t.

Blood when I poop? That’s probably the Celiac. Pain in a new place? That’s probably the connective tissue disease. Except I could be wrong.

I often have new symptoms that are strange enough or severe enough that most people would see a doctor. Sometimes it’s clear what the cause is, but sometimes it isn’t. And I don’t want to be rushing to the doctor every time. It’s tiring, it takes time, and my doctor is too likely to stop taking me seriously.

The thing is, what if it’s serious? I wonder about this sometimes. A friend had symptoms that her doctors attributed to her chronic illness. She pestered them to run more tests. It turned out to be cancer. A friend without chronic illnesses recently had severe pain out of the blue. He went to the emergency room and had all sorts of tests done. It turned out to be nothing much. It could have also been nothing important. When is it worth running the extra tests? When isn’t it?

I wonder if other people with chronic illnesses have these concerns? I’m I being to cavalier? Should I take certain symptoms more seriously? If so, which ones? And would my doctors also overlook my symptoms and automatically attribute them to my chronic illnesses?

What do you think? Do you ever wonder about this? How do you handle it? Please comment and let me know what you do.

6 Comments | Decisions, Expectations, Frustration, Healthcare, Rants, Symptoms | Permalink
Posted by chronicrants

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