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.)
The second trimester went well and we took a planned trip to London near the end, when I began feeling some braxton-hicks contractions. I thought it was no big deal. After we got home, the minor tightening continued to the point where I had to go to the doctor. Eventually they put me on Nifedipine and bed rest, even though there was no assurance it would really help. Given that my mother had lost a baby at 29 weeks, I wasn’t going to take any chances at 27. I felt lucky to make it to the end of the third trimester, went off of the meds and tried to move around a bit, but I had a lot of pelvic pain due to all of the muscle stretching.
By week 42, I was desperate and huge. I heard about a chiropractor who had luck in helping people get their water to break, so I went to her and after a pelvic adjustment and some walking around, late that night, my water finally broke. I endured 9 hours of labor without an epidural but finally gave in at that point in order to reduce my suffering. Labor took 7 more hours including 1 hour of pushing where my big little baby finally came out, having unknowingly stretched more nerves while coming through the birth canal. I was in a lot of pain, but I had no idea what was coming. When I was set to leave the hospital, I asked for a prescription for the pain, which the doctor thought was unusual, but he granted my request.
The first few weeks were agony. I was in constant pain. I went back to my doctor who said I was healing fine but had to zap one spot internally that had formed into an area of concern. I thought I’d get better. That was at six weeks. After month 5 of pain so severe, I could barely stand and rarely sit, I went back to that doctor and my old gynecologist. They both told me sometimes this happens and to wait it out. At that point, I determined to find a doctor that was better and closer to home (5 minutes away, since any more than that was too painful for me to drive), so I asked the local parents’ club e-mail list and found one who had multiple recommendations. Meanwhile, I’d had very little childcare or help because my mother and my husband’s mother didn’t live near, we hadn’t planned for much more than a part-time postpartum doula (who had gotten sick and then opted to move away). I was using an expensive nanny service out of desperation and it was already costing way more than we’d planned.
Meanwhile, I had gained some minimal sanity by blogging about my experience where I had started chronicling my pregnancy – Dot Blog – and I started contributing to the Silicon Valley Moms Blog where I had my own column. I began making friends online – friends who were nearby, who understood my challenges either because they had family members with severe illnesses, multiple kids to manage, or they themselves were dealing with major health problems. I was so depressed during that time, I was literally living one minute to the next, counting the seconds until my husband would drive in the driveway to help me after coming home from work. If it wasn’t for my daughter, I know I would have found a way to end my life the pain was just too terrible. Becoming a mommyblogger may have saved my life. Because of my new friends, I no longer felt like I was stuck at home all alone with a helpless infant.
Soon thereafter, my doctor referred me to a pain clinic that I’ll write about another time, but essentially they were of no help except to explain to me why I should try physical therapy – even though driving as far as the PT office (20 minutes) was extremely painful for me. It was around that time that I started to realize I was suffering from chronic pain. The PT was excruciating at first, but it began helping and over a few months, I got to the point where I could drive there with less pain and I could stand a little more. Sitting still felt like being stabbed by 200 knives, but I had made it through nursing my daughter 9 months while always reclining, and I could at least sit when necessary, if I used anesthetic ointment and a combination of medications.
Year two was easier. I could stand and make toast. I went to the park with my daughter on occasion. We found some reliable childcare. I started getting a few more paying clients so I could work from bed. I remembered some things I learned from the five years I was in pain from carpal tunnel syndrome and tendinitis, and I was learning to manage the pain. At some point I figured out I had fractured my coccyx (tail bone) and after dealing with a quack chiropractor, finally was able to convince a general practitioner to give me an x-ray to confirm it. But we still weren’t sure what all was going on internally causing the pain. Being a problem-solver, that frustrated me nearly as much as the pain itself. I had a feeling nerves were damaged, but I had pain in 4 different areas. It was getting complicated.
Finally in my daughter’s third year, I got to the point where I had enough help and enough balance of time management that I could actually start taking walks longer than a couple of blocks. I was able to travel to conferences and build on the career that had been put on-hold when I went on bed rest during the first trimester. I was able to use my work both as a mental challenge and a distraction from pain, and it felt nice to have approval from my professional community, which in some ways blended in with my mom blogging pastime. I got to where I could take my daughter to preschool like the other moms and make it through playdates without crying. I felt like I was getting my life back, little by little. And although it seemed to me like my recovery equated to roughly one year of improvement for a normal pregnancy recovery of just a few days, my husband tried to remind me often of how far I’d come.
Perhaps I got too greedy, but when summer ‘09 arrived, I’d felt like my recovery had stagnated the past few months and I was ready to try something to jump start things to another level – or so I hoped. My PT had recommended a pelvic pain specialist in the city so I went up there to consult with him about trying some anesthetic and steroid mixed injections to calm the nerves in hopes that they would start healing faster and that PT could carry me through the rest of a recovery to where I could live life 90% pain-free instead of 80% pain-full. One of us should have known better because the exam itself, poking and prodding, sent me back to a time in my pain progression that was about 1-1.5 years after my daughter’s birth. That was one week ago.
Now I’m battling falling back into a depressed state, I want more than anything to be enjoying the summer moments with my daughter, who at 3 1/2 is growing up so fast. I can’t believe I’m here again with this pain. (And this is the abridged version of the story.) Sitting has again become intolerable, the pain itself has shifted since the tests so I’m not accustomed to how to manage it, standing for very long has become a problem, and I have professional commitments that I don’t know how to meet, in terms of physical meetings and conferences. I’m back to taking my life one day at a time, and all I wanted to do was have a consultation.
So I’ve planned to get these injections on July 29th and a new battle has begun. I’ve deliberated about how public to be about my experiences and my continued situation for some time. I always have a tough time knowing what to say and what not to say with clients and partners of my projects, and that has made it difficult to decide what to say publicly as well. Meanwhile, I’ve been posting only the positive news of my career and personal life in places like Facebook because it’s all so intertwined. But as I’ve watched friends I work with and colleagues who have become friends online, everyone has challenges and we all need to share in ways that work for us. I’m a writer and a blogger, so although I closed Dot Blog a year and a half ago, I think I’ve been yearning for a place to be able to express what I’m going through ever since.
In the moments where I have opened up because I’ve needed to explain to people why I can’t sit through a volunteer meeting and need to stand by the wall or why I couldn’t attend a meeting due to a severe pain flare-up, I’ve come across some amazing people – mostly women – who have been there for me and who have shared with me their own personal stories. So this is my attempt to give back by exposing what I’ve really been doing the past four years, apologizing to my friends who I should have told more detail to (although mostly I was just living day-to-day and the thought of putting all of this into e-mail alone was daunting), and inviting the community that has supported me so much in so many ways without even knowing it to share in the reality of my life.
In the past six months, I’ve received a lot of Facebook messages saying “congratulations on your exciting career” because I went to the White House, covered special events, spoke at conferences, wrote well-received articles, was interviewed by the media, etc. and this should have made me happy. Instead, I felt empty because they didn’t know how often I was sick and in pain at these events, and how every moment was bittersweet due to the pain. There are jobs I could have taken and other opportunities I could have followed if not for the pain. My financial situation, while it may sound like I’m doing really well, is in jeopardy due to hefty healthcare and childcare costs. I have to turn down so many invitations to see friends. I’ve missed weddings of some of those who were most important to me. And just when I thought I could see a faint light at the end of the tunnel, it’s fading. I don’t know when the pain will end.
Today I’m on a family trip in rather severe pain. I made the mistake of traveling without my laptop, figuring I would take the time to read and that I wouldn’t be able to work much. Instead, I’ve had a lot of time alone as others in the family have played with my daughter or taken her out while I rest. Today I’m at my mother-in-law’s house alone and I decided to make toast for a snack, since I didn’t know what else I could cook quickly. I had to lie down while the bread was toasting because I didn’t feel like standing there thinking about the pain. I burnt the toast.
I’m scared, I’m tired all the time, I’m sad and jaded, but I look to the examples set by my grandfather who was telling jokes on his death bed and to my father, who was paralyzed at age 16 and always holds onto a positive attitude. I look at all of the people who have lost limbs or suffered from cancer. I look at those who have lost their children and I feel like I have no right to complain. I feel extremely lucky. And I value every minute that I spend with my daughter. She’s so precious. But that doesn’t mean that I don’t also need stress relief, a helping hand, a smile. So I humbly ask that anyone who has read this far please stick around and I will share my toast with you… (the good toast – toast made on my toaster, so I don’t have to watch it or guess at the timer.) Thank you.