The second or third time I sat down with a nurse practitioner who worked with my new OB/GYN that I found near my home after giving birth to my daughter and finding myself in severe continuous pain, she tried to explain to me how pain works. It took a lot of appointments with different doctors – gynecological specialists, pelvic pain experts, a psychiatrist, a neurologist and a handful of physical therapists – for me to really grasp the whole concept, but one thing she said to me that at first really confused me was “the pain IS the problem.”
I just watched President Obama speak at the White House to doctors and media about his plan to combine the efforts taken for healthcare reform in Congress to “get it done.” He concluded his speech using the example of a woman who had breast cancer, who worked, who had good insurance through her work and her husband’s work and who still ended up in significant debt from her medical expenses and spends her time worrying about money and working hard to pay off the debt instead of spending the time working on her own health and spending time with her children. Her name was Laura Klitzka but it could have been my name or any number of women or men in the United States who have the same problem.
I get a lot of people asking me all the time “so are you getting better?” I’m happy to report the answer is yes, but it’s slow going. I still haven’t gotten back to where I was before the injections yet, so I expect I lost about a year of progress in that ten minute procedure last summer. But I’m back to the point where I’m able to walk a bit, get more done around the house, and I’m starting to see friends more again. This is big news for me, even though I’m still in a lot of pain. It’s manageable pain and I can make it to work meetings and appointments with my cushion and pain meds. That’s progress.
The holiday season has become an uncomfortable time of year for me since my daughter’s birth. She was due on Christmas and then came two weeks late, along with all of the complications. Now each year as this time approaches, along with her birthday, I’m always reminded about how awful the past four years have been and how far I still have to go in my recovery.
I was making some progress this time last year, and last summer I felt some hope. But then I made a decision to try and bump my recovery speed up with those awful nerve block injections that backfired and made my situation worse. Now I’m stuck with worse nerve volatility than I’ve had since maybe ever, or at least since Julia’s first year, and I’m not sure where to turn. My stomach’s torn up from medications, I’m sick of side effects, and I really hate all of these unnatural treatments. Unfortunately I may have to fight fire with fire in order to make more progress.
I have a dream… an Olympic dream. Mine isn’t quite like others. I just want to be there to observe and to write about my experience. I just want to breathe the crisp winter air and see magic transpire on the ice and snow, hoping for a day when I can compete again.
I first laced up ice skates at age five, and my parents tell me that the look on my face told them I was hooked. I never had Olympic aspirations – I knew I didn’t have that kind of talent – but I also never lost my love for skating. I kept at it, even after college, and I’m proud to say I’m a national adult figure skating medalist. Not at the highest level, but that doesn’t matter.
After going through two long bouts with severe injuries resulting in long-term pain, I realize I’m still uncomfortable asking for help. Only when I began opening up to friends and colleagues over the past year did people begin offering to bring me food or help with my daughter and I honestly didn’t know how to respond. Finally I finally started allowing friends to bring me food now and then, and to help me with my daughter. But every day life is still a real challenge for us, so I think I’ve identified at least one easy way friends can help – even from a distance.
It’s been over three months since the nerve block injections. A few days after I received them, The New York Times came out with a a feature about a study on how many redheads react to anesthetics. That would be me. Sigh. Luckily, thanks to this blog, I got in touch with someone else who had a similar reaction who told me it took about 3 months for it to wear off. She was right. It was a huge help having a timeline to focus on. Now I’m almost back to where I was before those awful shots.
It’s been two weeks since my injections and people are already just assuming I’m feeling better, so I thought I should explain. No, I’m not. It’s worse. I was warned, but not quite enough. See, I was told I might get a “flare-up,” but I’ve never felt anything quite like this.
Imagine being cooked over a fire, boiled, burned, smoldering, along with being stabbed by small knives, all at once. I wish I could say I’m exaggerating, but unfortunately that’s what this pain feels like. It’s not that way all the time, so I’m lucky in that respect, but it can come on at any point from sitting or moving too much or whatever. This is way worse than any flare-up I’d had in the past from other activities that might have exacerbated my pain. Sigh.
Over the past few weeks since I’ve begun sharing my story of chronic pain on this blog, via its companion Twitter feed, through Facebook and just in general, I’ve learned two things: 1) I’m not alone – not by a long shot, and 2) by sharing, I’m helping others to bring out what they’re going through as well. During this short time, several friends have come to me with their own stories of pain, and four have started blogging about it.
I’m engulfed by sadness for those who toil daily with similar agonies, but I’m also overwhelmed with a positive feeling that by communicating about what we’re going through, perhaps we can help each other heal and help reduce the general stigma that surrounds people who live in pain. John F. Kennedy, one of the most revered leaders in modern history, suffered in severe chronic pain for years, yet he had to cover it up in order for the public to have confidence in his presidency. We can all gather strength from each other and our experiences.
My physical therapist is a really wonderful person. I’m incredibly lucky to have found her. Both my OB/Gyn and the local pain clinic sent me to her over a year and a half ago, and she’s made my life a lot better. But once my recovery started to plateau, she referred me to a pelvic pain specialist in San Francisco who essentially finally diagnosed my problem as pudendal nerve neuralgia (aka neuropathy, stretched nerves, entrapped nerves). His recommendation: a series of massive injections.
Yesterday, after a month of planning and preparation to make sure I would have help with my daughter, food in the house, and access to all of the pain management supplies I could possibly need, I trekked up to SF with my husband to get the shots. My PT had told me what to expect, thankfully, so I knew it would be excruciating. Thinking about it now still turns my stomach. It was like being stabbed 7 times in my pelvis. He injected me three times, with a six inch needle, and moved the needle around internally to hit the right spots near the problem areas – vaginal muscles, coccyx, and pelvic floor. It took less time than giving birth, but in many ways, the pain was sharper.