I can divide my time as a person with a chronic condition into three parts: (1) recovering from surgery / treatment, (2) looking for new surgeries / treatments, and (3) taking a break and just trying to live life to the best of my ability for a while.
2015 was a year of surgery. Less than a week into the new year I had hip surgery #3, and then in June, as soon as I was recovered enough and could mentally stomach another, I had #4. Neither surgery went badly, but they didn’t really do much to help my day-to-day pain, either. So at the end of the year, I had a chat with my physical therapist.
“I’m going to go on hospice for my hips next year.”
“Well, that sounds dramatic. And what are you even talking about?” he asked, rolling his eyes.
“I’m done, as in no more treatments, surgeries, whatever. I’m just over it. I’m going to keep doing my exercises, on my own, though, and take pain medicine, but I’m not searching for ‘the newest treatment’ or anything like that.”
Well, my PT hated that; I mean he really thought I was being dense and ridiculous. The great thing about my relationship with this guy is that I’ve been going to him since I was nineteen so we can have extremely honest conversations with each other. Sometimes that’s nice, but this time, I kind of wanted to tell him to pretend like he didn’t have the license to say whatever he wanted to me.
He couldn’t stop talking about the one treatment (of which we know) that I hadn’t tried. He wanted to send me to a doctor a couple hours away (who doesn’t accept any insurance, by the way) and “just talk to him.” I have to hand it to my PT, he knows how to get me. Because of the expense of this treatment I hadn’t checked the box yet, and he knew how hard it was going to be for me to leave a stone unturned, especially after a consult.
So I made the appointment, drove the two hours, and met with the physician who convinced me he could fix me. He was even excited about it! I spent the ride home chatting with my mom, who accompanied me that day, about what this could mean for me. I texted my PT, “Dr. B may be my new BFF.” And then I got a little nervous…
It was so stupid, and I knew it was stupid, but I couldn’t help it. I started thinking about what if this worked…what would my life look like then? As much as I hate this life as a social recluse in pain, it’s my life, and I’m used to it now! Was that going to change? How quickly would it change? Would I have to go out and make all these new friends…because let’s face it, my bench isn’t as deep as it used to be. Would there be pressure for me to find a boyfriend now? What would I say when I didn’t want to attend a social event but didn’t actually have a legitimate excuse not to go?
But there was a bigger concern, the thing that anyone who has tried a “promising” treatment in desperation understands : the letdown. I find it terribly difficult to reconcile myself with where I am in life and the challenges the future might bring. But I’ve done it over and over again because what other choice do I have? The second the hope of something that’s going to change my life for the better comes along, I get excited. I think about all that (not at all) scary stuff I described above, but I also consider the countless positives. I could finally take that trip I’ve been planning. Maybe I’ll be able to start running again, or take up tennis! I’m going to go to outdoor music festivals and pack my weekends with social activities! I’m obviously going to workout every single day (sometimes I get carried away).
I get so nervous-excited leading up to the treatment, then I have it, then wait to see if it worked. I hyper focus on every little symptom, every twitch, and every mood swing for days and days until I come to the horrible conclusion that I’m no better off. Although I’m no worse than I was before the treatment, my mental toughness has taken the biggest beating of all, and I backslide.
I had my third round of treatment last week, and up until the last day or two I haven’t really felt much improvement. I recently started thinking that one hip was possibly doing better, but I’m not so sure anymore. The physician said I can have two more rounds if nothing continues to improve, but he’s going to cut me off after that. I guess he doesn’t feel comfortable taking my money over and over again if it’s not helping. I think I’m okay with the idea of not getting better, but it makes me wonder why…
Why do others have success, and I don’t? I know everyone is different, but it bugs me and makes me wonder about my pain, my brain, and how messed up everything is. I’ve read that the brain of a person in chronic pain looks different than that of a person without it. Is my mind just not catching up to the changes that are happening in my body?? Wow, I’ve absolutely gone off track here, but I plan on discussing this in a later post (because I’m going to need to bone up on some serious science beforehand!).