Slowly over the past couple of months, I’ve become acquainted with some of the people on the list and now I finally feel like I have one place I can always go where people know what it’s like to be in this kind of pain, day in, day out, for many years. While it’s sad that others share in this kind of pain, it’s really a relief to know without a doubt that I’m not really alone. I have also received more e-mail recently from people who have found this blog, and each person I’ve connected with and helped has made it worth the time I’ve put into writing on the topic, putting myself out there.

Now today I updated my website, gave it a fresh new look, adding a new logo, and I have updated my blogroll. I draw particular attention to this because many of my new friends have blogs also sharing their stories and I believe it is incredibly important to showcase those blogs so that anyone who visits mine can find as much additional information as possible. I also have other resources in my blogroll and other blogs by women going through rough times from other health and personal issues, but the bloggers who share in this journey of pelvic pain deserve special notice. It’s awful we all have to go through this, and most of us do not live near each other, but at least we can support one another online.

In October, I decided to follow my daughter and run a bit, not thinking about how not running in 10 years might affect my feet. I was more concerned with my pelvic pain, which was doing better. Unfortunately, I ended up injuring my feet, and in injuring my feet, the pain reflected into my hips and caused new injuries. Now although the pelvic pain is stable again, the foot pain is excruciating. Common foot injuries for runners, but compounded with what I’m already dealing with, it makes vertical movement quite challenging. I was becoming accustomed short walks and fresh air. Now I can’t even walk into the kitchen without pain.

Then each time it’s gotten a little better, something happens and I overdo it with my feet, like the holidays. The holidays always make pain worse. Everybody overdoes everything, so that should be no exception. Then yesterday, my trusty running shoes that I wear indoors and out (doctors’ orders) ended up stepping in dog poop, and while cleaning them and waiting for them to dry, I put too much pressure on the feet, probably losing all progress I had gained over weeks of careful rest, careful movement, special exercises, etc… So frustrating.

It’s difficult to admit that here I am approaching 40, my body isn’t what it once was. It’s now weakened from half a decade of bed rest and reduced activity. It’s lost significant muscle tone. I recently discovered I’ve had a degenerated lumbar disc for many years (another story). Now I have to contend with how that relates back to all the other injuries. I constantly battle with nutrition since I’m often in too much pain to cook much, and grocery shopping is a nearly impossible task. My husband takes on much of that, but we both admit it’s not enough.

So just when we had been able to go without a nanny (a necessity from the past few years) as our daughter’s older, now we have to probably hire a cook/housekeeper for a couple days a week, dipping further into what’s left of our savings to do so, but in hopes that somebody else to prepare some meals and clean up the kitchen will alleviate some of the pain and struggles we have in our home. But I keep hoping that if we put our resources into health as first priority, eventually it will pay off for all of us.

Of course it’s depressing, but at this point, I’m lucky my daughter is old enough that I can take some decent pain meds (still not the narcotics I refused since she was born, but at least strong enough to take the edge off) and still function. Somehow after nearly 6 years of this pain plus another 3 previously and 3 more from another injury, my brain has digested the lesson that flare-ups are a normal part of recovery. That doesn’t mean I’m happy about it, but I’m less sad about it.

Part of the fault is my own for attempting to eat too many rich foods this week and for going out and trying to act like I’ve got a normal person’s body – sitting, driving, etc… There’s a fine line between a “never give up” attitude, i.e. always optimistic that I’m getting better, always trying to get to the point of living a pseudo-normal life and admitting that I still need ample rest. The other recent dilemma was the semi-annual childcare debate I go through. How much do I need? Is my daughter old enough that I can cut some of it down yet? She’s starting kindergarten. Can’t I get rid of the regular babysitter yet? Answers: Lots. Sort-of. No. (In my case, that goes back to the sitting and driving, as it does I know with other friends of mine with health concerns – particularly the driving issue.)

So while I may have gotten the lesson through to myself that setbacks are a normal part of the process, I’m still putting too much pressure on myself to perform. Performing could just mean showing up at my daughter’s class each week or it could mean making it to a meeting I really think I should attend. People certainly understand when I explain the situation, but I still regret I can’t be there. I still spend a lot of time reminding myself how lucky I am to have some resources to pay for additional help – even though we did have to sell our house in order to be in that situation. So many women and children are worse off – both here in the U.S. and in other countries.

I digress, likely partly because of sleep deprivation and the medication kicking in and blurring my thoughts, but the lesson here for anyone who’s still reading is that when you have an injury or disability of whatever sort, and there are weeks where it seems worse – and often IS worse – try not to dwell on it. Sometimes you need to let out the frustration. I’ve certainly done my share of that. But sometimes you just need rest more than anything else. Time to heal. Time to take the stress off yourself to help your body heal or at least revive what it can. And remember – setbacks also present an opportunity to ponder what else you can do better to prevent the next one, or at least delay it as long as possible.

http://www.PetitionOnline.com/winpain/petition.html

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!)

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!

Something of myself was lost in that delivery. It’s difficult to explain how it happened, really, but I think the combination of constant horrific pain, extended sleep deprivation and massive depression just sucked away a little bit of my soul. I write this now in a mildly sleep-deprived state, so I won’t express it as well as I’d like, but essentially I forgot some of myself. Part of me evolved into another person, constantly obsessed with pain management and entirely devoted to my daughter’s well-being. At the same time, as I began building a career around blogging and writing from bed, much of the work I took on came by chance rather than any particular plan I might have intentionally hatched on my own.

Now my daughter is becoming her own person, and through her independence I’m finding some of my own again. Sleep has been incredibly important in this journey, because even though I am still in pain probably 80% of the time, I’m much more conscious of where I’m going and why. Professionally I have some amazing opportunities, but due to my physical limitations, I remain unable to take on all that I’d like in that respect. Still, it’s better for my health and for my daughter that I don’t work that much and I appreciate on a minimal level being forced to make realistic decisions for my family.

What I lost on bed rest though was a sense of long-term focus. People would ask me what I want to do next in my career or in my life and I’d just say “whatever doesn’t hurt” or “whatever allows me to have schedule flexibility” rather than anything I might actually want for myself. In the past I would harass my husband for not knowing exactly what he wanted to do with his career and he’d just go from job to job following an interesting product or group of people rather than taking time for himself to challenge his dreams. Now I get how that happens. And for someone who is “multi-passionate,” as a friend once termed me, I’ve always had a difficult time limiting myself. It doesn’t help that self-confidence was never my strong suit, and being temporarily disabled doesn’t lend itself to increasing that metric.

I don’t want it to seem like I wasn’t doing anything worthwhile, however. I semi-anonymized this blog for search purposes, but many of the readers know who I am. You know I’ve been able to do some really amazing things over the past four years and I value those opportunities and experiences highly. But as I may have mentioned before, as cool as it was to be in the White House, I was in chronic pain in the White House, and I was unable to completely take in the whole experience like I would have otherwise. In fact, not much impresses me these days. I get the biggest highs off the rare days where I have almost no pain and can live a regular life and do things I love like skating.

So now I’m not sure where I’m going next. I still have pain, but I’m establishing a bit more independence of thought and ambition. I want to tackle the pain, but it’s not worth becoming a zombie for months on end and losing my newly regained mental freedom. And it may be worth noting that I’ve been getting out a bit more lately physically too. Physical freedom also feels nice.

Now I look at my life and my family and I feel like I should take a moment to reveal to myself what should come next. There are wondrous possibilities – more time with our daughter, starting a flexible company on my own terms, perhaps writing a book, maybe even taking a much needed vacation. What I remember of “me” may not be totally reborn yet (mostly because it never totally died in the first place), but I do have some ideas gestating that I hope will take shape. The real challenge will be finding that elusive solution to diminishing the pain for good while trying to hold onto this new-found sense of self. Stay tuned.

I was always looking for the root of the cause of the pain but after a certain point, it doesn’t matter what the root is because the pain becomes a neurological misconfiguration in itself and thereby is the problem. So here I am embarking on yet another medicinal journey to try another new drug – typically used for a wide range of different things – to relieve my pain. Lyrica, the latest in the arsenal, I’ll start taking this weekend and then several months of treatment commence. It may take a combination of a couple of drugs and we don’t know what dosage will work, but because the pain is the problem, nothing less than 100% success in relieving the pain will work.

I’ve read a lot about this now, but essentially due to the nature of messages transmitted up and down the spinal cord to the brain from the affected nerves in the pelvis, there’s a continual state of irritation, stress and inflammation on the tissue that over time has probably already altered the nerves and my spinal cord. So now we have to make them forget they are, were, or ever have been in pain so they can calm down, heal, and reset. Then and only then can I go back off the drugs and attempt to have a pain-free life.

Honestly, at this point I’d be happy with 70% pain relief. That would be dreamy. 80% would be like heaven. 90% I’d feel like a kid again. 100% I cannot even fathom. So one might see where I could be skeptical this whole thing will work, but it has worked for others and I have to be optimistic in order to make it work for me, so here goes nothing. It’s been 16 years since my last A+ was recorded, so I’m a bit rusty on the concept, but I guess it’s time for some Yoda wisdom: do or do not – there is no try.

I try not to make this blog political and this post is not political either. This is about right and wrong and an ethical tenet that crosses religious boundaries – helping your sick. This is something advanced cultures value, but often it’s only given lip service. In order to truly help your fellow man, woman and child, we need healthcare that’s better than what we have now.

It doesn’t need to be formally socialized to the level it is in Canada or France (although those are ranked the best in the world on neutral studies, so it is important to look to them for guidance); it just needs to cover everyone adequately with quality options. We don’t want back alley procedures. I’m not talking abortions here – I’m talking about surgeries that people will try to get cheaper because they’re not covered by insurance. These things will happen more if insurance costs go up which will inevitably happen if the insurance companies stay in charge of the healthcare process.

Healthcare should be in the hands of the patient and the doctor. Not insurance companies. Insurance and government should be conduits to helping doctors and patients, not bottlenecks. They should not make us feel guilty for following doctors’ orders and getting expensive procedures. They should not put us in debt because we can’t afford what’s been recommended by the medical practitioners. They should only be concerned with helping us get better and helping prevent us from getting ill or injured in the first place. They should understand that creating debt in sick people means sick people stay sicker longer and in the long term, the economy suffers as well.

The real problem, of course, is shifting to a culture of consistent wellness away from acute band-aid reactive necessity. What President Obama seeks is only the next step in an important public battle for national health. What I seek is a world where we spend our time with our families and on meaningful work, not wasting time filling out forms and standing in lines only to get mediocre care and limited treatment. We have an opportunity to improve the lives of hundreds of millions of people by supporting healthcare reform at this critical juncture. It’s for all of us and for our children.

(Photo from the office of my new physical therapist.)

I traveled last month as an experiment. It was a short flight, Southwest, good leather seats that don’t irritate as much as others. I still had to take extra pain meds to make it through the flight, but that’s something I can do when I don’t have to drive. I also made it through a movie at a movie theatre with the same pain meds, and a concert. So while it’s irritating and disruptive, I am able to get out and do things which helps immensely with the depression and frustration I tend to feel when the flare-ups come.

When I first launched this blog, I meant to write more about daily life, to share more stories from my regular days as a mom trying to manage pain and take care of a preschooler. I still want to do that. My life is lived mostly on my iPhone, so I’m trying to get into the habit of at least writing posts in apps there that I can publish from the laptop later. Thanks everyone for continuing to visit and I really appreciate the comments and feedback especially from others who have suffered from similar injuries. I keep this blog going so we can all continue to help each other.