Confronting the ghosts of medical experiences past

May 10, 2016

Two weeks ago someone I know through my chronic pain support group asked if anyone could give her a ride to an appointment in a town that she can’t get to by public transportation. I volunteered. Little did I know.

It wasn’t until after I volunteered that I thought to ask where in that town her

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Where I walked after confronting today’s ghost.

 

appointment was. It turns out, it was at the same medical center that I went to for my entire childhood. It’s the place where I was treated badly over and over and over again.

My first reaction wasn’t a good one. I pictured the ride up that elevator. I remembered the waiting rooms. I flashed back on the parking garage. And I got really anxious.

And that’s while I was still sitting in my living room!

If figured I could drop her off, find someplace else to wait, and then pick her up. But I was still worried about how I’d react when the time came.

Then someone else in the group volunteered to take her. I told her that if she didn’t mind, it would help me out if she could go with the other person. I never told her why – why cloud her opinion of the place? I was incredibly relieved, but still, the entire thing brought back a lot of memories I’d managed to block out.

Today was different. When a friend called and said she was anxious about an appointment and asked me to go with her, I asked where it was before I answered. I’d learned my lesson. It wasn’t until we arrived at the office (which I’d never been to) that I saw the name on the door. Oh my!

This was the surgeon who messed up my treatment when I was 18. On top of that, he was a real prick. I never call anyone that, but he was. He was a jerk. An asshole. He told me that I shouldn’t complain about the pain I was in because the Olympic gymnasts (it was during the Olympics) were in worse pain (who would he know?!) and look what they could do.

If I was better at standing up for myself back then, I would have pointed out that they had a choice. I didn’t. And I would have pointed out that he was a real jerk for talking to a 17-year-old like that. And I would have never seen him again.

But I didn’t say any of that. Instead, I returned to him and let him perform surgery on me. What was I thinking?

And I saw him today. My friend asked me to go into the appointment with her. I put my feelings aside and acted like I didn’t know the guy. I supported my friend. I took notes. I asked questions.

And now I’m not sure how I feel. I went to a pretty wooded park and walked around for a bit after that. I pet a couple of dogs that people were walking (because any day I pet a dog is a good day!) But I didn’t think about that doctor at all.

Maybe I’ve moved past it. Maybe I dissociated from that guy. Maybe I’ll have nightmares tonight. Maybe this will catch up to me in a week. I don’t know.

All I know is that right now, at this moment, I’m feeling ok. I’m focusing on that. And I’m going to try extra hard to avoid horrible doctors and terrible buildings from past experiences, but I know that might not be possible. After all, I’ve seen a whole lot of doctors in over 20 years of living with chronic illness in Boston. I guess it was inevitable that I’d face some of these ghosts again. I just hope it’s the last time for a while….

Have you had experiences like these? How did you handle them? How do they make you feel?


My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!


A doggie update

March 8, 2016

Some decisions are easy. Chocolate or vanilla? Chocolate. Always chocolate. But some are hard. Keep the dog, or give the dog up?

I wrote about this the other day. And in the end, I didn’t keep her.

Several of you wrote in and you helped me to decide – thank you so much for that!!

At first, I was concerned about the physical requirements to care for a dog. But after a week that become easier and I knew it was a stretch, but doable. The problem was, I didn’t want to do it enough. I didn’t want her enough. I realized that if she was the right dog, I’d be happy to do that work. But she wasn’t the right dog.

She’s lovely. But she’s not emotional support dog material. Several of you commented about how great it was to have your dog snuggle with you when you didn’t feel well. She wasn’t going to be that dog. I kept telling myself it would take time, but I finally had to admit that wasn’t it. She loved to be pet, but she would sit 6 inches or more from me and want petting. She would sometimes stand with her front paws on me for petting. She never sat in my lap. She only sat against me a few times. A few times in 10 days. One day I was upset and crying (because of her, ironically) and she didn’t respond. These were full on sobs while I talked to my mom on the phone. She didn’t come over to me. She didn’t shy away. She just sat where she was, not even looking at me. She was indifferent. That’s not what I want from a dog.

I never made a connection with her. I tried but couldn’t. And that’s rare with me. I make a connection with most dogs I meet. So she just wasn’t the dog for me.

I’ll still get a dog. I don’t know when, but I will. Right now I’m going to take some time to grieve this loss and to figure out how I might do things differently the next time around. But one day, I will definitely have a dog.


I got a dog. Maybe.

March 4, 2016

I had expected to write an excited posted filled with happy stories and cute dog photos. Instead, I’m caught in a limbo, unsure what to do.

I’ve wanted a dog for ages. I grew up with a dog and I’ve always loved dogs. In my 20s I 2016-03-01 18.55.33worked and traveled too much for a dog. I wasn’t ready for the responsibility. In my early 30s my health was too bad for a dog. Then last year, I was talking to a friend for the millionth time about how much I wanted a dog, but that I couldn’t manage all of the walks. She pointed out that I could litter train a dog.

Suddenly, getting a dog seemed feasible. I could walk her once a day and play with her indoors for exercise and have her use the litter the rest of the time. This could totally work. I’d have a lovely companion. A furbaby. Someone to love and someone to love me. I could finally get my dog!

After a ridiculous amount of thinking and over analyzing, checking with doctors and working out logistics with my landlord, then recovering from my foot accident, it was finally time. I sent out several applications. And then the call came: my application was being processed for a little cutie named Roxanne!

Roxanne is a darling. She is sweet and beautiful. She’s housebroken, so in some ways she’s a lot less work at this stage than I expected. She’s got big ears and lovely markings and a tail that’s almost always wagging. Right now, she’s sitting in my lap.

And I don’t know if I’m going to keep her.

If the rescue agency had said the adoption was final, maybe I’d have a different mindset. I’ll never know. Instead, they said this was a foster-to-adopt. I had 2 weeks to decide. After two weeks, I could return her to her last foster home and get almost all of my money back. I shrugged it off when they said that; of course this was permanent! But now I’m not so sure….

Even in the first days, I had doubts. I tried to ignore them. I decided to try the fake-it-til-I-make-it approach. I emailed my loved ones about the adoption. I posted on Facebook. It wasn’t quite working. I was overwhelmed and exhausted and not sure if she was really going to be mine. I posted a more hesitant teaser on this blog. My parents visited to see if they could offer some insight. I spoke to friends with dogs. I talked to her new vet.

And I still don’t know what to do.

At first, I felt like she was too hyper. But that was mostly her acting out as she adjusted to a new place, combined with me not handling it in the best way. Really, she’s so great, there’s nothing particularly “wrong” with her. I just wonder if I can really fit Roxanne into my life.

I had a good thing going. But it was tenuous at best. I was starting to do some paid work, but I was having trouble finding time and energy for it. I was hoping to even start dating again soon, but there was no time or energy for that. My health was doing ok, but I wasn’t doing my exercises consistently. Still, it was going pretty well overall.

I want to give Roxanne back, but I’m not entirely sure why.

If I want to give her back because I don’t think I can fit her into my life without giving up something I shouldn’t (like paid work or physical therapy), then I have to give her back. But if I want to give her back because I got used to having no responsibilities, that’s not a good enough reason. If I want to give her back because I’m scared of the unknown, that’s not a good enough reason.

I used to make changes in my life. A lot of them. I changed cities. I changed jobs. I traveled. Now, I haven’t been on an airplane in 5 years. I’ve been in the same apartment for 10 years. I haven’t been working. My life has been fairly stable. I think stability can be good. I need it to a certain extent. But it can make me complacent. Roxanne would definitely change things up, and maybe that’s the part that’s scaring me. In a life where chronic illness takes away my sense of having any control at all over my life, that stability gave me a small measure of control that I could hold on to. Am I ready to rock that boat?

Or maybe I just didn’t fully understand just how much work a dog would be, and it’s too much for me.

I would love any and all thoughts, advice, and tips you can offer! Please comment below. Do you have a dog? How do you balance dog care with chronic illness? Do you feel that you shy away from new things because you’ve become set in your ways? Really, please share anything you think of. Maybe it will help me.

Right now I’m leaning towards giving Roxanne back. I’m not sure if I can manage having her. But this would also mean giving up on my dream of dog ownership, at least for now (maybe down the road I’d feel more ready?) Not to mention, I would miss her and feel terrible about her being abandoned yet again.

Help!