Lifestyle Uncategorized

March Thoughts on Medicine on a Monday

Well, somehow it is suddenly March, I’m two weeks away from spring break (hallelujah), and I’m panicking about how fast the year is moving. But I’ll save that panic attack for another day.

When March started on Saturday, it marked more than just the third month of 2014. March 1, 2014 was the 8th anniversary of my 2nd ankle surgery. I don’t really pay attention to the anniversaries any more – other than celebrating every June that I’ve made it another year without a surgery – but this one stood out to me.

I’ve been having some trouble recently with doctors and people as a whole taking me seriously. But these experiences aren’t new to me. There was a period of time between surgeries 2 (3/1/2006) and 3 (1/14/2009) when there was no visible reason for my extreme pain.

Eight years ago, I had my second ankle surgery. As a part of recovery, there’s pain. This is normal. In my experience, recovery pain feels different from the original pain. And at some point, I realized that the pain I still experienced was no longer recovery pain.

Commence nearly 3 years of seeing new doctors, including outpatient treatment at the pain clinic of Children’s Hospital of Boston. The pain clinic had me in physical therapy, using a TENS unit (probably the best thing to come out of my experience with them), seeing a health psychologist, and on Gabapentin for neuropathic pain.

I was told over and over and over again that there was no clear current reason for my pain. Yes, I had a history of orthopedic issues. Yes, there was probably some neuropathic pain going on – this was before fibromyalgia was discussed more; Gabapentin is a drug used a lot for fibro. But I kept getting patronizing smiles and frustrations and allusions to the pain being in my head.

I was 14 when surgery #2 happened and 17 when surgery #3 happened. Surgery #3 happened when I went to Massachusetts General Hospital and an orthopedic surgeon told me that #1 hadn’t worked, but other than that there wasn’t much idea of what was going on. However, he took a leap of faith with me. We had no idea what else was going on, but he suggested we fuse my ankle and, while we were in there, put a camera in and take a look.

This camera showed arthritis. My cartilage looked like a cotton ball pulled apart (by the way, it’s not supposed to look like that). The initial orthopedic issue, tarsal coalition, was still there.

It took almost 3 years and my doctor and my family going, “What the hell. There’s nothing else to lose.” I was miserable, physically and mentally.

But I’m grateful for it.

Because of those 3 years, I don’t take crap from any medical professional. Just because you don’t think that there is something major going on doesn’t mean that you’re right. Just because you went to medical school doesn’t mean that you’re right. Just because you think you know what is going on doesn’t mean that you’re right.

You are your number 1 advocate. You need to stand up for yourself and keep seeking the truth because no one else knows you and your struggles better than you.

image made by Kate Mitchell

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  • Reply Cece

    That's a lot of surgeries. I can't even imagine. I just had one and that has been plenty for me to deal with physically and emotionally.

    March 3, 2014 at 4:49 pm
  • Reply Helene in Between

    wow, you've had so many surgeries- I'm so sorry. but totally agree- YOU have to be the one to stand up for yourself.

    March 3, 2014 at 5:20 pm
  • Reply Kate Brown

    It's actually pretty inspirational how you've stood up for yourself. I have a lot of respect for you because of that.

    March 3, 2014 at 11:56 pm
  • Reply White Lace and Promises

    Yes, you must be proactive with your health. It bothers me when people just take the doctors word when they have a gut feeling that something more is wrong. You go, girl. I was frustrated with my in-laws this past week when my MIL was in hospital. She has had severe abdominal pain. They found a "cyst" on her ovary, they "think" and are sending her to an oncologist??? If they didn't think something was wrong, why not send her first to a gyn. But they didn't ask the questions. Drives me crazy. You take care of yourself.

    March 4, 2014 at 3:58 am
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