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.


Cutting out the people who don’t care

October 13, 2015

Her: I’d like to invite you to our house for Thanksgiving.

Me: You’ve probably heard that I might need surgery, so I can’t plan anything until that’s figured out.

Her: I’m sorry to hear about the surgery. I had no idea. Just let me know if you’ll be able to make it or not.

On its face, this seemed ok. She was sorry to hear about the surgery. So that was a good response, right? But I felt like something was missing. It nagged at me. I read the message again. Something still nagged at me, but I didn’t know what.

Hours later, it hit me: she didn’t ask why I needed surgery, if it was a big deal, or anything else!

I’ve been one of the lucky ones. Most of my family and friends have been incredibly supportive. A lot of people lose many of their loved ones when they have a chronic illness. It’s an unfortunate side effect that the doctors don’t tell us about. It’s hard and it hurts and it sucks. But it happens.

For me, it was my sister. I’m sure our problems aren’t all because of my health, but they’re a big part of it. Every now and then, I question if things area really that bad. Maybe I should try to make amends? Maybe she really does care? And then something like this happens.

Apparently our parents hadn’t mentioned my possible surgery to her. I guess there wasn’t anything to mention yet. I was pretty sure I’d need surgery, but I hadn’t gotten the MRI results yet (which is why I haven’t mentioned it to you yet – don’t worry, I’ll tell you all about it when it’s official.) Now, if someone I cared about had said, “As you probably know, I might need surgery,” I’d be upset and worried! I’d ask why, when, if I could do anything to help, etc. Actually, that’s how the few friends I told have responded. They’ve been amazing. They’ve been calling and texting and emailing. They’ve asked questions and offered support. Not my sister. Nope. She didn’t even ask why I would need surgery.

It’s hard to accept that sometimes a relationship can’t be salvaged. It’s natural to want to keep people in our lives. It’s especially hard when that relationship isn’t a vague acquaintance or a coworker, but a close friend or a sibling. We don’t have any other siblings. We only have each other. But that doesn’t matter. That’s not enough of a reason to try to be close to someone who obviously doesn’t care about me, or who at the very least tries to distance herself from me.

I know from past experience that I am better off focusing on the positive relationships in my life. So I will go to Thanksgiving dinner to be with other relatives (depending on how I’m feeling,) but until that day, I will put my limited energy into relationships with the people who love me and care about me.

Now if you’ll excuse me, I need to answer some more of my friends’ emails. They’re worried about me.


“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!