How many times have people been well-meaning and said to me “I hope your back feels better” as some standard gesture acknowledging my pain but when they really don’t actually want to hear any more about it.
First of all, my pain’s not in my back. It’s in the parts I use to sit, and where I feel the most feminine. It’s where I gave birth. I understand people don’t want to say the V word. I don’t want to say it myself. And technically my pain is in the nerves within the muscle tissue in a few locations, so it’s not just about any one particular location anyway. I fractured my coccyx which is technically part of the back.
I’d never wish what I’ve been going through the past six and a half years on anyone, but one of the worst things about it was feeling really alone quite often. Without my family and blogging friends, I could never have survived. Yet there was still an element missing – I had no one to talk to who had gone through the same experience. Slowly over time, I’d receive an e-mail message about once a year, thanks to this blog or other things written on the topic or through mutual friends. Then I finally decided to go hunting for a pelvic pain e-mail group and I found one, the ‘happypelvis‘ list.
One would think I’d be used to setbacks by now after so many different injuries, but it never gets any easier. My only comfort at the moment is that my wrists and hands aren’t hurting too much, so at least I can blog and work. But taking care of my family isn’t working out so well.
It’s been 7 months since I’ve taken Tramadol for my pain. Surviving daily off Motrin, I got into a good pattern of preventative pain medicating with it, each day to keep the pain from flaring. Last week, I had a severe episode of food poisoning that triggered new gut pain and added to too much sitting, suddenly I find myself with the worst flare-up I’ve had in months.
If you want other women in pain to be treated fairly by doctors, other medical professionals, government agencies and the public, sign this petition and please share that chronic pain is an epidemic global health problem with serious consequences to sufferers and those around them. Read more about it at ForGrace.org.
Today I worked out at a gym for the first time in 6 years… without pain. For those of you who know about the injuries I sustained from pregnancy and delivery of my daughter, you know this to me is a major milestone. Traveling across the world and back last month was a big turning point in my recovery.
I don’t write about this much publicly any more because I don’t like focusing on the pain or making others in my network feel uncomfortable, but today I felt like sharing here. For those who suffer for months or years at a time, perseverance pays off when you keep trying new treatments and never give up. While today’s wasn’t a major workout by most standards, to me this is a bigger deal than running a marathon. (It’s sure taken a lot longer to get there!)
I’m about to embark on my first overseas trip in five years. The flight alone would’ve killed me one year ago – the pain of sitting being so intense. So it’s a good time to reflect where the past five years of pain have taken me.
This video clip came into my inbox this morning of Phyllis Greene, who started blogging from bed rest, like me, but who is in hospice. She’s 90 (as her blog, appropriately, is called wedeb90). It’s inspiring to see that. I have a 99 year-old friend who’s on Facebook. She too inspires me. She’s not moving around as much as she used to, but the bottom line is that new media can enable us to reach out and be active in communities in ways that we never could before, providing opportunities to feel much less isolated and alone. We’re lucky to be living in the new media age to have these opportunities.
Soon I’ll be on the longest flight I’ve taken since I was pregnant and this pain journey began. I’m taking all of my pain medications along, and I have all of my other pain management tools that I’ll bring also. Let’s hope I don’t go over the weight limit. Wish me luck!
Giving birth to my daughter I thought would save me from a really hellish, long, exhausting, painful and really annoying pregnancy. After spending the majority of the 9 months on bed rest, I was excited to regain my life again. Little did I know that over four years later, I’d still be in pain. Still, although it’s been a long, arduous journey, I’m beginning to feel like I’m emerging from the fog. The pain and the constant need to put my daughter first took me on a journey away from myself and into a coping pattern that I feel is beginning to break.
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 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.
(Photo from the office of my new physical therapist.)