Putting life on hold

October 17, 2015

Note: I’ve missed writing to you all so much! After you read this, you’ll probably understand why I’ve been MIA lately.

I watch my friends going through surgeries and hospitalizations and I’m always grateful that my illnesses don’t involve either of those. Sure, my illnesses have a ton of other issues, but I try to be grateful for what I can. But now it’s my turn for 2015-09-05 18.36.09surgery. And it has nothing to do with my illnesses.

I had just finished preparing lunch when the phone rang. My parents were updating me on some exciting news. I put them on speakerphone while I went about doing things in the kitchen. It was late, around 1:30, and I was hungry. I was hot. I was distracted. And as I reached for the glass of water, my arm nudged the knife that was sitting on the counter. The knife that I was done using. The knife that fell off the edge of the counter.

Nudging the knife happened in slow motion, but the rest was quick. I felt pain in my foot and immediately grabbed it. I was aware I had screamed – had my parents heard me? Maybe the pain was because the handle of the knife hit the bone. There was pain near the bone. Maybe that was it. It wasn’t the blade, it was the 2015-10-17 11.45.26handle. I still held my foot tight, as you do when something hurts. But it was also fear. I didn’t want to let go. What would I see? But then I saw the blood seeping down my palm. Oh boy. It was the blade.

I hung up the phone and called a friend. I didn’t want to call 911. They would take me to the closest hospital, one that I have very good reason not to trust. He didn’t answer his phone. I called another friend. I knew she wasn’t working that day. She pointed out that she could not possibly get me down the stairs and out of my building, and that I had to call 911. The idea of dialing that number brought up all of my anxieties around medical issues, but what choice did I have? I called. Somewhere in there I pressed a paper towel to my foot. The blood soaked through. I used a second paper towel. The operator got my information. Eventually, there was a knock at the door. I hung up with 911. I held my foot with one hand and hopped to the front door…. I couldn’t walk so I hopped.

On the way to the door I grabbed a small container of cashews from my fridge. After all, I never got to eat that lunch that was not sitting, ready, on my counter. The knife was on the floor. As I passed through the living room I grabbed the novel I’d been reading. I was gross and sweaty. I was wearing lounging clothes. I hadn’t planned to leave the house that day. But the bedroom was on the other side of the apartment. I got to the door and pulled the chain off the lock. It wasn’t the EMTs. It was my neighbor. My parents knew him. They’d heard me scream, then they heard crying. They’d called back, but I’d ignored the call; I was busy talking to my friend and 911. I didn’t listen to that message until I got home 7 hours later – my mother said they wanted to call the police in case I was in trouble but they didn’t know where I was. They called my neighbor and he came to check on me. Luckily he was home, and so was I. He assured them I’d be ok and he stayed with me until the EMTs arrived.

I was bandaged and taken to one of the better Boston hospitals – they said that for penetrating wounds they brought patients to those hospitals. For two and a half hours I sat in the waiting room. I couldn’t read, so I chatted with other patients. Eventually, we were all taken in. My mother arrived just after the doctor’s initial examination. The xrays showed no broken bones. They said my tendons were fine. I got stitches. I was panicked as the doctor did the stitches, certain something would go wrong. I have had so many “easy” medical things go wrong that I can’t help but worry now. There were so many medical people and I didn’t know or trust any of them. But it was finally done. When they first examined me they mentioned they might give me painkillers. After they reviewed my medical records (my doctors are all at this same hospital, so they can see my records through the computer system) they said I should take Tylenol and Motrin. They might has well have offered me a handful of M&Ms. Those wouldn’t help me at all! I asked about painkillers but they said I didn’t need them. More on this later.

I eventually made it home. I couldn’t get up to my apartment. A stranger on the street helped my mom get me to my building’s lobby. I sat on the stairs while my mom took my keys and went up to my apartment for my desk chair. She brought it back down the elevator, then wheeled me to the elevator and down the long hallway. Inside the apartment I had to walk small amounts, and I screamed every time my foot touch the floor. It wasn’t the worst pain I’d ever felt, but it was damn close, and it lasted longer.

The knife was still on the floor, next to bloody paper towels.

We watched a movie, then collapsed into bed. Thank goodness for my mother! The next day she picked up a medication that I needed to get anyway. She got me food from the supermarket. She stopped at the gluten-free bakery and completely spoiled me with goodies. She even brought me a bouquet of flowers. I have the best mom!

For weeks I was in pain and had trouble walking. My foot constantly woke me up at night. I felt my foot wasn’t healing right. My toes were at odd angles. I couldn’t lift or wiggle my big toe. It just hung there. The second toe hung a bit, too. I went to see my rheumatologist. She said it looked ok, but she was a bit doubtful. She said to defer to the doctor who took out the stitches the next day, but to see her again in a month to follow up. When I went to my primary doctor’s office to get the stitches out, I saw the same doctor who put them in. What a coincidence! I pointed out that my toes were at odd angles. He said it was fine, just give it time. I wanted to believe him. I should have pushed harder, but he wasn’t going to listen. I asked why he didn’t prescribe painkillers. He said Tylenol and Motrin were typical for this type of injury. I didn’t believe him.

I tried to wear sneakers, but that foot just hurt too much. I kept wearing the surgical shoe. I shouldn’t still be in pain. It occurred to me to see my podiatrist, but by this point, I’d be seeing my rheumatologist in a few days, so I waited. My rheum didn’t like the look of things, but admitted it was beyond her. (As a side note, that’s why I love her – she’s great at what she knows and readily admits when she doesn’t know something.) She said I should see her colleague in the same office, a podiatrist.

That was a week and a half ago. And now I face surgery. That podiatrist immediately realized at least one, but probably two, of my tendons had been cut. The ER doctors hadn’t checked properly. He didn’t check properly a second time when he took the stitches out. It was obvious. He ordered an MRI, which confirmed it – two cut tendons, one in the big toe and one in the second toe. I brought the MRI to my own podiatrist and she read it the same way.

Tendon repair surgery should be done at the time of the injury. It can still be done now, but the recovery will be longer. And of course, it has already been almost 7 weeks. I’ve put in my time. I should be mostly recovered by now, and instead, it’s all about to start over again! More pain. More sitting.

The surgery will be scheduled on Monday and it will take place some time in the next 2-3 weeks. Maybe sooner. Each doctor I saw was shocked that I wasn’t given painkillers. One asked why they weren’t prescribed so I told him my theory, how they changed their minds when they saw my history of chronic pain (despite the fact that no one had prescribed me painkillers in ages.) He just nodded his head and didn’t dispute it. They were all surprised the tendons weren’t properly checked to begin with. I guess my fears at the hospital weren’t entirely irrational after all.

Until the surgery I’ll be wearing the boot in the photo. After the surgery I’ll be wearing it for another 6-8 weeks. So far it’s been less than 2 days and I hate it already. It’s heavy and exhausting, but what can I do? I need to keep my ankle immobilized to prevent further widening of the tendon gaps.

I am so lucky to have wonderful family and friends. I’ve only mentioned this to a few people so far, and everyone has been so supportive and has offered to help me. Even the people with health problems who can’t run errands have offered to just come by and keep me company, which I know will help a lot. I know more people will offer to help when I tell them about this. It will be tough. It would be months before I’m walking around normally again. And of course, I fear that this could cause permanent problems. On top of that, I haven’t been able to do my physical therapy, so my back and neck have been more painful, and all of this sitting doesn’t help either. But again, what can I do? I’ll just continue to do the best I can.

And I’ll do as much as I can before the surgery. I’m running errands, making calls, preparing my apartment. I want to make sure everything is as ready as possible. Because I won’t be doing much for a while after the surgery.

This sucks. I’m just hoping that the suckiness is temporary!

Side note: Please don’t leave any comments on this post about your own surgical experiences with tendon repairs. I’m managing, barely, to keep an emotional balance. Hearing stories about other people’s similar stories will tip the scales the wrong way. Please feel free to share *other* stories as much as you’d like. In fact, I encourage it! I just don’t want to hear about tendon repairs.


That sinking feeling

October 9, 2015

I’m sorry I haven’t written in a while. I’ve thought about it but, well, life’s been a bit rough lately. I’ll be writing about it one of these days, but I’m just not ready it. So instead, let’s talk about the phone call I just received 15 minutes ago.

***********

*ring*

Hello?

Hi, this is H from Dr. Z’s office. Do you have a moment to talk to Dr. Z?

Oh boy.

I’ve been Dr. Z’s patient for 10 years now, and this is the first time his office has ever called me for anything other than rescheduling an appointment. I immediately thought about the bloodwork I had done last week. Could it really be that bad? I’m seeing him in two weeks; what couldn’t wait?

I’d had a few things tested it. As it turns out, the concern was about my thyroid results. Unfortunately, he doesn’t test the Free T3, which I think is the most useful. Still, my TSH was very low. It could have been worse, but it was definitely too low. I’d raised the med during the spring and summer. I’ve read that some people need to make changes seasonally and I guess I’m one of those people. I’d completely forgotten about it, though, until a few minutes ago. Apparently, I need to lower the dose again.

So why did he call? Because at these levels, I’m at risk of being hyperthyroid, which means having an overactive thyroid. That would put me at risk of all sorts of things, include heart problems. You don’t want to mess with that shit! I’ve had low numbers before, but never this low. So he wanted to check on me.

Thankfully, I’ve done enough research to know what the symptoms of hyperthyroid are, and I’m not having those. Well ok, I’m having some anxiety, but it’s a very specific kind of anxiety that’s completely warranted, but I’ll get to that in a future post. I’m not jittery, my heart isn’t pounding, I’m not shaking. So I’m ok. For now. But I better start figuring out when to lower my thyroid dose.

There are people who never have to worry about that feeling. They never get medical tests. Or they get tested for relatively harmless things that are easily cured. They don’t know that sinking feeling of hearing that a doctor wants to talk to you about recent test results.

I’ve had that sinking feeling many times before. Sometimes it worked out ok (like when the biopsy showed I *didn’t* have breast cancer) and other times not so good. And those not-so-good memories are why I get the sinking feeling in the first place; because I know it really might be bad news.

Today I’m lucky. Today it’s not so bad. Today I know what symptoms to watch for and I know that I’ll be just find as long as I take the right actions.

I just hope I’m as lucky next time.


We need to talk about poop

September 18, 2015

There are certain things we don’t talk about publicly, but we know that they aren’t being talked about. Or maybe they’re occasionally mentioned, but only in vague terms or to certain people. You’re probably thinking about things like money and sex right now. Would you ask a stranger, or even a friend, how much they earn for a living? There are some friends I’d ask, but very few. Would you ask them which sexual positions they prefer? How about asking where their erogenous zones are?

But there are things we talk about even less than money or sex, and one of those is poop. We just don’t talk about it. But we need to.

My doctors over the years have asked me about my sex life. We don’t get into details, but they ask if I’m sexually active, if I’m care, if I need testing for STIs, etc. But they never asked about my poop. You’d think a primary care physician would ask at a checkup, “How often do you have bowel movements?” But no, not once.

I was an adult before I learned that I’m supposed to poop Every. Single. Day! Who knew? Not me. How would I know, when it’s something no one talks about? Around that time I also learned that loose stools aren’t normal. Sure, I felt lousy and pooped erratically, but I had no idea these were signalling a problem that needed to be addressed.

As it turns out, poop is important! The frequency, color, density, and shape of your stool says a lot about your current health. It’s something that I believe every doctor should ask about at an annual checkup, and certainly every gastroenterologist should ask these questions. Patients should be encouraged to keep a poop diary for just a few days each year, right before their checkups, so they can accurately answer these questions.

In my case, it would have been helpful if someone had realized much sooner than days without pooping and then a half dozen bouts of diarrhea in a day were, you know, a Bad Thing! And that’s just me. What about the thousands of other cases out there? I know some of you have had gastrointestinal problems. How long did it take for someone to realize there was a problem? Would they have figured it out sooner if they’d been asking you about your poop?

Of course, the problem isn’t just the lack of discussion at medical appointments. We don’t talk about it in general. It’s not like I ask a friend about their poop habits or tell them about mine. There’s no common knowledge here. There’s a running joke on The Big Bang Theory about Sheldon scheduling his daily bowel movement, and how he finds it very odd that others have bowel movements whenever the urge strikes them, without any schedule at all. Ok, maybe Sheldon’s approach is unusual, but at least he makes sure he has a daily, healthy bowel movement and he isn’t afraid to talk about it. The part I find interesting is how off-putting it is for everyone else when he discusses it. Sure, maybe it isn’t something to bring up at dinnertime, but aside from that, what’s so bad about it?

There’s less embarrassment around a bloody nose, burping, hiccuping, crying, peeing…. all things that involve natural bodily processes and/or fluids. Why is that? Why is it that someone can say, “I’m going to pee,” or “I need to take a whiz,” and that’s ok? But the moment someone says “I need to go poop,” or “I need to take a dump,” it’s considered inappropriate? Hell, some people try not to poop at their date’s house for the first several months of dating!

I think our society has gone way overboard on its aversion to any discussion whatsoever of poop. It’s time for that to change. I say, let’s discuss pooping just like any other bodily process. I highly doubt it will hurt anyone, but it may just help a whole lot of people.

What do you think?


Learning it’s ok to cry

September 11, 2015

A couple years ago I wrote about the fact that I don’t cry much about my health situation but I wasn’t sure why. By contrast, I know exactly why I don’t cry from the pain itself, and that’s because it started when I was a kid, and I learned fast that the adults in my life thought that I was just trying to get attention. If I cried, they thought that even more. So I didn’t cry.

Fast forward to my 30s, and I still don’t usually cry from pain, frustration, or fear. I cry for other reasons – a sad book, the death of a loved one, and such and elicit tears, even though health issues rarely do.

In the last year, though, I’ve been making more of an effort to let myself cry when I want to. It’s cathartic, so why not? I do so much to try and help my health, both physical and mental, so shouldn’t I be willing to cry?

I started with simple things: I didn’t try to stop myself a few weeks ago when I was reading a sad scene in a book. Before, I would try to hold back the tears and fail; this time I didn’t try to hold them back. I let a few tears escape when I was dealing with a difficult health decision. It was a good start. And then came the real test.

When I was in the ER last week the pain was horrible, but even worse was the fear. My anxiety around doctors has been getting worse, and I was practically panicked at the idea of a doctor I didn’t know giving me stitches. What if he messed up? What if there was a broken bone they hadn’t noticed on the x-ray? What if he somehow hurt me? On top of that the pain was intense. For a while, I tried not to cry out of habit. Then, finally, I had an epiphany: it was ok to cry! This doctor didn’t know me or my history. I would never see him again. Plus, crying in this situation was not only acceptable, it was expected. I mean, I had a big cut that had been bleeding for hours and the doctor was dabbing at it to get away enough blood that he could see it clearly. Of course it hurt like hell! Why shouldn’t I cry?

So the tears came. They poured down my face and I did nothing to stop them. I didn’t make a scene. I didn’t yell or scream or sob loudly. I didn’t exaggerate but I also didn’t hold back. And you know what? It felt so much BETTER to let all of that out!

This is a long process. I need to unlearn more than 20 years of habit, but I know I can do it. I just need to make more of an effort to cry when I feel the need to cry. Wish me luck!

Does this sound familiar? Have you experienced anything similar? Please comment below – I’d love to hear your story!