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 us directly – even from a distance.

I’ve deliberated a long time whether to ask others for donations to help us bear the burden of my medical expenses and extra childcare costs over the past four years.  I kept hoping I wouldn’t need to ask people for help.  But now we’re faced with losing our house over the next few months.

Essentially if I can’t come up with enough work and cut our expenses (or soften them in combination with work) over the next two months, then we have to sell our home that we worked so hard to buy.  And leave the wonderful neighborhood that our daughter loves.  It will take us years to get back into a comparable house given the market and our dwindling assets.  Meanwhile, I’m losing time with my daughter as she nears the end of her precious first five years.

I finally have a team of excellent doctors, a trusted physical therapist and a pair of fabulous caregivers that have been a huge help to us, so I don’t think I need help finding those any more, but unfortunately due to our family’s special needs, these costs over the four year period have been excessive – beyond $150,000.

We have known friends who have gone through short periods of time where they have been hospitalized and requested assistance from other friends through non-profit websites associated with the hospitals or related organizations, but given that I never had to stay in the hospital for my treatments, I felt somehow like I couldn’t ask for that kind of help.  Finally, I thought perhaps I could try a social media based fundraising application and see if that might be something that could be unobtrusive but yet for friends who really do want to find a way to help us out in our time of need, it would be a way for them to feel useful.

I have now setup a ChipIn page to test this out and see if it makes sense.  (WordPress wouldn’t let me install a widget on the blog unfortunately.)  I’m requesting gifts of any amount of money possible to help pay specifically for medical expenses that are not covered by insurance but that are essential to my recovery – physical therapy, medications, special testing, and new treatments.

I pay approx. $1500 a month out-of-pocket just for specialist physical therapy, most of which is not covered by insurance after a certain number of visits per year.  That will be the first thing the money goes toward, so I set a goal of asking for $3000 in help from my social network and any visitors who are so kind as to assist.  That will pay for physical therapy for two months until which point we will have made it through the holidays and can reassess if there’s any chance we can afford to stay in our house.

If somehow I exceed the $3000 goal, I will look for assistance with the essential childcare costs that we have been burdened with since I can’t take care of my daughter on my own.  But for now, I’m starting smaller.  Even $5 helps, and it will go into its own account – I have a separate checking account directly hooked to PayPal where ChipIn connects – and that money will be put directly toward physical therapy and other medical costs.

I will be eternally grateful for anyone who contributes during this difficult time.  I’ve struggled a lot with whether to do this, but I finally decided that when I want to help my friends out, I prefer when they tell me how to best help them.  At this time, this is the best way to help me (although meals and assisted playdates – for those of you who are local and have kids my daughter’s age – also help us save money and fulfill our daily needs), so I hope people will understand that by asking, this is my response to those who continue inquiring about how I’m feeling and what you can do.  Please click here if you want to contribute – even $5 will help.

Thank you for even taking the time to read this.  It was very difficult for me to write.
- Sarah

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.

There’s a song in Les Miserables – “One Day More” – where the revolutionaries sing about how their hopes for freedom could be recognized the next day. And of course the next day, pretty much all of them die. Three days from now, I’ll be having a pair of really scary injections and I’m feeling the panic set in.

I resolved myself a couple of months ago that it was time to do something a bit more drastic in terms of treatments, but then when I had the consultation with this expert pelvic pain doctor (who says he’s given over 2500 of these injections, like it’s supposed to make me feel better somehow) and after all of his testing, my pain’s been worse. I’m not a happy person. But now, it seems there’s nowhere to go but ahead with the injections, so Wednesday at 2:00pm Pacific time, I’ll have 2 needles stuck into my… well… yeah, there. Where the baby came out three and a half years ago and stretched my nerves to kingdom come.

Glancing back 16 months ago, I found a post I wrote at the Silicon Valley Moms Blog, entitled “Coping With Chronic Pain – Two Years and Counting…” Due to their posting requirements, I can’t reprint the entire thing here without permission, but you can click on it and read it there, and I’ll include some excerpts that I thought were relevant at this point to reflect upon.  Keep in mind that I wrote the post because we were doing a topic day on ‘coping.’

I wrote:

I finally got to writing this post at the end of our topic day because – well – I spend so much time on various forms of coping, one of which is a deeply ingrained talent for keeping too busy. Actually things are much, much better for me in terms of my health and the chronic pain. (I usually don’t repeat adjectives, but really, they’re a lot better.) So I can’t complain and I’ll try not to make this sound like it, but your life changes when you suffer from severe injuries. Gradually, as you realize you may never be the person you once were, your perspective becomes altered.

I’ll admit there are a lot of sad aspects to living in chronic pain. It’s no picnic any day, regardless of how it’s viewed. But at least I have the benefit of some experience. Pain from two different sources that lasted five years qualifies, doesn’t it?

In 1996, I took my first job after graduating from college. I was excited to be working at a small company as a contract systems administrator. It was a great experience professionally. Physically, however, it was a ticking time bomb.

It seems a bit silly that after blogging for 7 years and starting over a dozen blogs that this is my first official mommy blog, but so it goes…

Now that I’ve gotten going with this blog, I just want all of my mom blogger friends to know I do want to link to you – I just don’t have all of your site URLs with me while traveling, and the computer I’m on is difficult to use to research these things.

So if you want to help me out by adding your blogs in the comments here, I’ll add them to the blogroll as soon as I get a chance.  There’s not much there now, but I expect it to be a valuable resource once it’s completed.

And please… if you’re willing, put up a link to this blog somewhere. It’s important to raise awareness about chronic pain, pelvic pain, and what it’s like to be a mom in pain.  We have a long way to go before there’s true job flexibility and equity for people who are disabled for whatever reason, and pain counts there as well.

It’s all about toast.  I really love toast. In college, my cinnamon & sugar toast became so famous that I actually was teaching friends of friends how to make it just right.  (That was about the extent of my cooking skills anyway.)  Toast has also become a theme in my management of pain the past four years because it’s an easy way to explain the good days vs. the bad. On the good days, I can stay standing next to the toaster, doing other things in the kitchen while my bread toasts.  On the bad days, the pain is so severe that it hurts too much to even stay standing long enough to toast the bread.  That’s about 4-5 minutes.

This pain began with early bed rest in my first – and only – pregnancy.  I started bleeding a few days into the pregnancy and was having a lot of abdominal pain.  The doctor advised me to take it easy and my husband had to keep reminding me that in 80% of cases, early bleeding was not an indicator of miscarriage.  So I rested.  Over the next few weeks, the embryo developed just fine and we could see the little pulsating blob on the ultrasound, which we named Dot.  Still, the first trimester kicked my a** and I was exhausted all the time, I couldn’t focus well, and I was in a lot of pain as the ligaments stretched (and it’s possible the stretching of my nerves in the pelvic area began here as well.)