Packing a small suitcase is no longer an option

October 20, 2016

I used to travel constantly. And when I wasn’t traveling, I’d often spend the night at my IMG_20161020_202419.jpgboyfriend’s house. So I didn’t think much about packing. Sure, a big trip overseas required more thought, but short trips closer to home were easy. I’d throw a few things in a bag and be on my way.

I’m not sure when exactly that changed. It’s something I think about every time I pack now. Even a night away involves packing a full suitcase, instead of throwing a change of clothes and a toothbrush into a backpack.

Tomorrow I’m leaving for a weekend out of town. 10 years ago that would have meant throwing a few things in a small bag right before I ran out the door. I never understood why anyone would spend more than an hour packing for any trip. Now I get it.

I have a packing list, and I’ll be checking it closely. There are clothes and toiletries, of course. A novel and some knitting, definitely. Obviously a phone charger and, based on the forecast, an umbrella. There are more common things, like my spare glasses. I wouldn’t go far from home without them.

Then there’s my CPAP. And I have to pack an extension cord, because I’m not sure where the bed will be relative to a power outlet. There’s a long list of medications, including the ones that are easy to forget to pack, because I take them at all times of the day. There are my “just in case” meds, too, the ones I don’t take every day, but if I need them, I want to be sure I have them on hand. There’s special food that works with all of my food allergies. A heating pad for pain. Knee braces in case my knees act up. The blue light to help with my sleep disorder, not to mention the nice side effect of also helping my seasonal affective disorder, which is acting up now that we’re well into autumn. Far too many clothes, because my body doesn’t regulate temperature well and I could be sweating or freezing, regardless of the actual temperature. And there are probably one or two other things that I’ve forgotten.

It’s two days and I won’t be bringing a backpack. Instead, I’ll have my full suitcase, expanded so my pillow will fit. It has to be a suitcase with wheels, so I can get it in and out of my apartment building. I’ll also have a separate case for the cpap, and another bag for my food. Because now travel requires a lot more than a change of clothes and a toothbrush.

What the hell, Mother Nature?

October 17, 2016

Like many people with autoimmune diseases, summer is not my friend. The heat and humidity combine to make me miserable, and there’s very little I can do about it. I stay in air conditioning. I rest. And I feel lousy.

And then fall comes, and all is right with the world. In the last few weeks, I saw a huge transformation. My mood improved, I was in less pain, I had more energy. I felt better, I looked better, life was better!

I was loving every single minute of it. I could take walks outside again. I could sit outside and read a book. Things were GOOD!

And then they weren’t. Mother Nature got confused. She forgot that it’s supposed to be autumn here in Boston. She forgot about our low humidity and cooler temperatures. And she went back to summer.

It’s not that hot, thankfully. But it’s warmer than it should be. And it’s humid. Very humid. A few days ago it was 58 degrees and dry, and later this week it will be 82 and humid. What the fuck, Mother Nature?

Even worse, I can’t use air conditioning. I have window units that have already been taken out for the season. They’re in the basement. If I could snap my fingers and have a magic fairy godmother put them back in, I would, but unfortunately that’s just not an option.

So I feel crappy and I don’t even know how I feel crappy. I’m in more pain, but not much more. I’m more fatigued, but not much more. My mood is worse, that’s for sure. But I can’t put my finger on any particular reason why this weather is so unpleasant for me. I wish I could.

The windows are closed. No fresh air. It’s more humid outside than inside. No fans in the windows, either. No long walks. No short walks. Not much of anything. Just waiting. Waiting for the weather to improve, because what else can I do?

And in the meantime, it’s screwing up my schedule. It’s too hot and humid to do laundry. It’s too hot and humid to cook. It’s too hot and humid to do any of the things I most need to do.

I was loving my jeans and fleece jacket. I’m not ready to go back to shorts and tank tops. So please, Mother Nature, please please please remember that this is fall, and give us back the cool, dry days!


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!

The magic healing power of the pooch

October 8, 2016


I saw my naturopath the other day and she asked about my recent health. I had two answers: one set for before the pup’s visit and the other set for during.

But now he’s been gone for a week and I miss him horribly. And I’m not feeling as great, either.

It was a nice coincidence that he arrived the same day the weather changed. Summer sucks for me, and my symptoms ease when the temperature and humidity drop. I was simply lucky that those changes started the day my mom dropped him off at my place.

Then for 8 days we cuddled, we walked, and he kept me on a schedule. Like it or not, I had to take him out 3-4 times per day. I usually didn’t want to, but once we were outside, I figured we might as well walk a bit. After all, it made him so happy.

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Every time I took him for a walk, I went much farther than usual. Then on the way home, I’d take a longer route so he could walk more. Or I’d get home, then walk a few more blocks and then back. Because he loved it.

I should have been fatigued, but I wasn’t. The change in weather helped, but not that much. I was tired each evening, but not fatigued, and that makes a huge difference.

Then we would cuddle. I learned when he was most likely to cuddle and I changed my schedule to get more cuddle time! He was cuddly in the morning after his breakfast, so I set my alarm earlier so we’d have more cuddle time between his breakfast and mine. Seriously. (This photo was taken in the evening. I tried to balance the laptop on one leg while he slept against me. Heaven!)

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I had less pain, too. Even with all of that walking, my toes hurt less. And the rest of me hurt less. Or maybe I just noticed it less. Either way, I loved it.

Plus I saw more people. Even though I didn’t see many friends while I had him (not his fault – some of my plans fell through when someone got sick) I talked to a lot more neighbors. Everyone wanted to pet him. We were stopped constantly when we walked down the street. I was amazed at what a difference it made in my mood to be able to talk to so many people.

In general, I was happier. Just happier. Every single thing I did was better with him around.

When I had to give him back to my parents I almost cried. When they got him, though, my mom kept saying that I looked happier than she’d seen me in a long time. And I was.

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One day I’ll have a dog of my own. In the meantime, I’ve asked my parents if I can borrow this special guy for a few days next month. Because he truly is the best medicine I could ask for.

Best. Houseguest. Ever.

September 25, 2016

img_20160925_090133My parents are on vacation this week, which means I get to hang out with this cutie for 8 full days! Yay!

After just a few hours, I was already feeling happier than I had in a long time. Lucky for me, our fall weather arrived around the same time the pooch did, so it was cool and dry yesterday. We took a short walk and sat down in a popular area. I read a book, stopping frequently to talk to people who wanted to pet him.

I’m a friendly person, so I often talk to strangers, but never like this. I must have spoken to at least 2 dozen people. And this sweetie loves to be pet, so he was thrilled to have 2 dozen people petting him throughout the afternoon. img_20160925_112223

I got a lot more exercise than usual, too. I know that I can’t keep up this level of activity every single day, but how great that on a sunny, cool day I was able to spend more time outside than I normally would, thanks to the furball from heaven. Even better, when I got home and felt too tired to do anything, he jumped up on the couch next to me and settled in for a cuddle. It couldn’t have been better!

He helps my pain, he helps my fatigue, he makes me feel less lonely, and he’s just wonderful to be around. Who could ask for more?

I look forward to the day I have my own canine companion. In the meantime, this guy and I will be living it up this week!

Please share photos of your pets in the comments. Today it’s all about pets!


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!

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.

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