You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.


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.


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?


Why I’m scared to work

September 14, 2015

Up until a few years ago, I just assumed I’d work a full time job. At one point I quit a job where I was miserable and I took some time off before going back to work, but of course I assumed I’d get another job, and I did. I always worked.

Until I didn’t.

I’m coming up on the 4 year anniversary of when I left my job for what I thought was a few months to rest and recover. Little did I know….

A lot has happened in those 4 years. At the start, doing any sort of work was out of the question. It took every ounce of energy I had to cook dinner or read a book. I didn’t have the physical or mental ability to do any sort of paid work.

Then slowly, I saw some improvement. I began to leave the house more. I did some volunteer work from home. I did favors for friends that involved using my brain in ways that I hadn’t in a while. My cognitive abilities still weren’t what they had been, but they were better. My physical health had improved, too.

As I felt better, I wanted to do more. I started thinking about small ways to make money. I sold my crafts. I did some more of the consulting that I’d let fall away. Someone asked if they could hire me to help them with a project and I said yes. It felt so good to get paid! Still, I was no where near being able to cover my bills. I needed something bigger.

I thought about that person who hired me out of the blue. I thought about the clients I had. That was good money with a flexible schedule and I could do most of it from home. In fact, with a little creativity and Skype, I could probably do it all from home. So how could I get more clients?

I don’t have all the answers, but I do have an initial plan. I’ve been reading a lot, I’ve listened to podcasts, and I joined Facebook groups of other people trying to make money in similar ways. The difference, of course, is that most them are working full time and they work on their side businesses in the mornings, after work, and on weekends. Even so, they probably put in a lot more hours than I can. On a good week I can do 5-10 hours, and on a bad week I’ll be lucky to do 2. So I figure that if they can earn good money in a matter of months, then I should be able to do the same within a year.

With a lot of the research done, I crafted my plan. And then I got stuck. I was scared. At the beginning, I probably won’t earn much, but what if I begin to earn more? How will I handle that? If I earn more than $780 per month for 9 months, and those months don’t need to be consecutive, then I’ll lose my social security benefits. That means I’d better earn enough to make up for that! But actually, that’s not the part that scares me.

No, what scares me is 3 years from now, and 10 years from now. If I can manage to earn a few thousand dollars per month doing work from home that I somewhat enjoy and that doesn’t strain me too much, then yay! Fantastic! Perfect! But what if I can’t keep it up? What if 3 years from now I’m back to where I was 4 years ago, completely unable to do any paid work? And I’ll need to reapply for social security. And what if I don’t get it? Or what if that happens 10 years from now? Or in 10 months? Or 6 1/2 years? Will I be living always in fear of being unable to support myself?

Yes.

But what if I don’t do this? What if I stay on social security without working? I’ll be watching my savings dwindle as I use them to pay for all of the things that my benefits don’t cover, like medical expenses, electricity, some of my groceries, car expenses, part of my rent, everything related to my car, and any sort of entertainment (yeah, right!) And what will happen when my savings run out?

So I have to do this. I have no choice. If I could work a regular hourly job then I could make sure my income stayed consistently at $779, but that just isn’t an option. So I know I need to do this.

But I’m still scared.