How strange to bleed

August 18, 2015

Every time I have a “normal” injury, I’m surprised to bleed. You see, most of my symptoms are invisible, or nearly invisible. I might get pale or shaky, but that’s usually it.

Saturday night was a bad night. Horrible nausea. Diarrhea. Body temperature fluctuations. I was mi2015-08-18 18.20.58serable.

Sunday night wasn’t as bad as Saturday, but it wasn’t pleasant. More Diarrhea. More body temperature changes. Less-severe-but-still-there nausea.

But Monday night was much better. I felt ok! So I decided to take a short walk. I didn’t want to push myself or push my luck, but I needed to get out of the house a bit. I made it about two blocks when my ankle turned and down I went. In the end I was fine, but what initially struck me was the sight of the big scrape on my leg. I’m so used to the invisibility of my symptoms, I wasn’t sure what to make of it. On the way home, I got a couple of funny looks. People could see the blood on my leg. Usually I suffer in silence and no one knows that anything is wrong. This time they knew.

It wasn’t a big deal. There was only a little blood. It stung last night, but now it seems ok. You can even see that in the picture, taken 23 hours later, it’s not so bad. And yet, it looks a lot worse than what I usually go through.

How odd.


The shock of speaking with a supportive doctor

August 9, 2015

“I’m impressed by how well you know your body.”

“It’s not your fault you have gluten intolerance or hypothyroid. It’s just what you’ve had to deal with and it seems like you’ve been doing a great job.”

I’m not used to hearing things like this, especially from a doctor. Who was this amazing stranger?

24 hours ago life was good. I’d had a fantastic day with first one friend, then another. I’d spent a lot of it outside on one of the rare August days that’s cool enough for me to be outside. I was happy and content and tired in a good way. It was an absolutely perfect day. Until the reaction.

I’d been putting off trying Metformin for ages. I was worried that it wouldn’t sit well with me. I know a lot of women have problems with it. But I was also running out of options. I can’t take estrogen because of the side effects, and ditto for progesterone. My naturopath wants to try some homeopathic treatments. My only options were the homeopathy, Metformin, or literally scraping my uterine lining. I’d prefer to avoid that last one. So after dinner, I swallowed 1 pill. And almost immediately it hit me.

Diarrhea, nausea, and a racing heart all waxed and waned for what seems like years. After several hours of symptoms I texted my aunt my symptoms and asked her to get my uncle’s opinion. He’s a non-practicing doctor. The last time I had a bad reaction to a medication he told me to wait it out. When I blacked out in their living room he took my blood pressure and had me rest. He’s never told me to go to a doctor. This time, he told me to call my doctor. So I knew I should do it.

It takes a lot for me to call my doctor. I’m sure many of you can relate. I’m used to things going wrong with my body, so I don’t panic. And the diarrhea wasn’t so bad. It was certainly less bad than my reaction to eating gluten. But the racing heart had me worried. My resting pulse is around 75. I kept checking my pulse using a phone app. It was 82, 89, 95, 94, 88, 83, 99, 101, 109…. I didn’t like that my pulse had gotten better, then worse again, and so had the diarrhea and nausea. I almost never call a doctor after hours; the last time was probably 10 years ago when I was coughing up green phlegm. But this time it seemed like the right move, so when my uncle told me to call, I did.

My endocrinologist (who prescribed the Metformin) doesn’t have after hours, so I called my primary care physician’s office. Just 5 minutes after I left the message I got a call back from the doctor on call. This was 10:30 on a Saturday night, so I wasn’t sure what to expect. This guy was amazing! He spent 25 minutes on the phone with me. I stated my symptoms, the timing, and what I’d been doing (orange juice in case it was a blood sugar problem (because Metformin can do that), sucking on ice to stay cool and hydrated, etc.) I was a bit defensive and insecure as I stated just a few of my current diagnoses. I was apologetic for calling. I couldn’t help but brace myself for the doubt that usually follows, so I was shocked when, instead of doubt, I received support!

Thankfully, he didn’t feel I needed to go to the hospital unless things got worse. He agreed with me that, because of my immune system problems, it was best to keep me away from the hospital as much as possible. That was a relief. The shock was the way he treated me. Instead of assuming I was exaggerating, he took me seriously. He said more than once that it was good I called. He told me how impressed he was with the way I was responding to his questions and monitoring my situation. He couldn’t have been any more perfect.

My current doctor is supposed to be the best, but I haven’t been thrilled with him. Now I’m thinking about switching. I might be much better off with whoever belongs to the voice I heard over the phone last night who was calm, reassuring, supportive, and clearly knows his medicine, too. I don’t have to decide now, but I’m definitely going to give this some thought.

As for my own saga, another 1/2 hour or hour after I got off the phone and had texted an update to my aunt and uncle, my symptoms eased enough that I was able to doze off. When I woke up, I felt much better. I dozed again, and this time when I woke up I felt ok. I moved from the couch to my bed, and slept a deep sleep until morning. I’m spending the day resting, just like the doctor ordered. It’s another gorgeous day outside and a friend invited me to a barbecue, but I don’t mind missing it. I’m just happy to be feeling ok (though tired.) Today has been all about computer solitaire, movies, tv, and crochet. But tomorrow might just be about researching that doctor.


Too much weight on the seesaw

July 27, 2015

You know those cartoons where someone jumps on one side of a seesaw and the person on the other side goes flying up in the air, over the first person’s head, and finally lands in a puddle of mud? Keep that image in mind.

Being chronically ill requires a careful balancing act. Symptoms, treatments, pills, diets, supportive friends, unsupportive friends, jobs or lack thereof, and everything else in life contributes to this. If were all placed on a seesaw, somehow it would just evenly balance, so that neither side was on the ground or up in the air. Sure, it might totter. You might feel like it was going to tip at any moment. But miraculously, it wouldn’t.

That’s how it feels, most days. Obviously, something big could throw that seesaw out of whack, just like it would for a healthy person. A car accident or death of a loved one will always disrupt life. Usually small things can be absorbed into the heap on either side of a healthy person’s seesaw without any lasting disruption to the equilibrium, and that’s great. Those of us with chronic illness know that our seesaws are a bit different. They have a lot less room for extra weight.

I was chatting with a friend yesterday. She updated me on her recent hospitalizations, then said, “I know this is going to sound silly compared to everything else, but I have an ingrown toenail….” I knew just what she meant. When we deal with severe health problems, it feels like we should let the little things get to us, but I feel like it’s the opposite: because we deal with severe health problems every single day, we just don’t have the capacity to handle anything new, even if it’s small.

I often feel the same way. I could be in excruciating pain, trying to simply breathe through it, and some small new problem sends me into a tailspin. Why? Because I’ve already used up all of my energy dealing with the pain and I just don’t have a damn bit left for anything else. That new thing, tiny though it is, adds just enough weight to one side of my seesaw that everything on the other side flies up and lands in the mud.

Have you experienced this yourself? I’m certain at least some of you have. My friend was relieved to hear that I had. We’re often told by society that we should be able to handle our health problems, and for us chronically ill folks that’s hard enough on the best days, so it feels like defeat to let a so-called “small” problem tip our seesaw. But I’m sure it’s happened to some of you. Please share in the comments; if you don’t want to share details, a simple “Me too!” will let others know that they aren’t alone.


A little support goes a long way

July 24, 2015

I was having a tough day. I was exhausted, fatigued, and in a lot of pain. It all felt overwhelming. I was supposed to spend the night at my parents’ house, but just the idea of driving down to them felt like too much. With my mother’s encouragement, I went anyway. She knew I’d feel better when I arrived, and I was pretty sure she was right.IMG_20150724_195633

I rested for a while and finally got in the car with my things. I hit far too much traffic for 3pm on a Thursday, but after nearly two hours, I arrived at my destination – it took double the time it should have.

As soon as I walked in the door I got a big hug from my mother, a smile from my father, and warm greetings from two wonderful pooches. It shouldn’t have mattered. It shouldn’t have made me feel better. And yet, somehow, it made all the difference. After some cuddling with the guy above, I felt so much better. Some good homemade food, nice conversation, and tv rounded out the day and before I knew it, I was asleep on the futon with this cutie pie stretched out alongside me. There’s just something about cuddling with a dog that makes me sleep so much better.

The pooch has been great medicine, but my parents have been, too. The simple things help more than they know. Helping me to carry things, fetching things for me, and just generally trying to help me feel good showed me how much they care. They made me feel cared for. And that’s why now, just 27 hours later, I’m still in pain, but I’m less fatigued and my soul feels refreshed. I’ll spend an extra night here because I know that no matter how I feel, my parents will always do their best to help me feel better. So thanks Mom and Dad! You’re the best!