When I was about twelve years old, my mom started visiting this small little herb shop just out of curiosity. It was run by a woman who was also a chiropractor. Once in a while my mom would go into the shop and pick up loose herbs for tea and chat with the herbalist chiropractor. Pretty soon they became good friends. At one point, my mom had her friend check me because I had mentioned my back and hips were hurting.
The herbalist checked my spine and told my mom to go to my pediatrician and get X-rays done to see if I had scoliosis.
Shortly afterwards we went to the pediatrician and he commented that if I did it must not be bad but he’d send me to imaging. So I went up the stairs to imaging with my mom, put on an embarrassing blue hospital gown in a stall and walked over to a tiny room and had X-rays done on my spine.
Maybe a month later, I asked my mom if she had ever heard anything back from the doctor. She hadn’t. So, she called the doctors office to inquire about my X-rays. She got a call back that it wasn’t significant and not to worry.
By the time I was 15 I had to run for P.E. every other day and my back and right hip would just ache like crazy when I did. Every step I took felt like my right hip was being rubbed raw. I complained to my mom about it. She felt like the pediatrician we had at the time kept blowing us off when we’d ask him about things, so we decided to try a chiropractor that had been referred to us by a friend.
When we went into the chiropractor and had my X-rays done, he was very stern about how bad my scoliosis was.
He told me that I would probably suffocate to death if I ever got pregnant and tried having kids. He wanted me to lose weight to take some pressure off of my spine, which I thought at the time was probably impossible (something I had done since I was age ten or eleven was diet because I hated how my body looked). It was a pretty depressing prognoses. He suggested coming in a few times a week to see if he could help my back.
I came in two or three days a week after school and the chiropractor would pop my back with his giant hands and then leave me with I’m guessing a tens unit attached to my back for a while and leave the room.
I don’t really know if any of those visits helped or hindered because I don’t remember any significant changes at all. I wished I had known then that not all chiropractors are the same and that there are many different approaches to what chiropractors do so possibly if I had shopped around I could have gotten some different treatments than I did.
After a while, I believe my mom and I just decided to kind of ignore my back or try not to think about it any more.
I was very worried about my weight because I couldn’t stand the way I looked in clothes. I remember wishing that it was jacket weather all year round so I could hide in a jacket constantly. I had strange uneven rolls of fat on my back that wouldn’t seem to budge no matter how hard I worked out. I would call the ones on my waist “my chunkies” and the ones that hung off of my shoulder blades “my wings”. I’d laugh and make fun of them sometimes to people I knew because I wanted people to know I wasn’t blind to how I looked but I was incredibly disgusted by my body.
More than anything, I wanted to hide.
One thing I was blessed with in high school, was I had friends who were really amazing loving people. I had a few different groups that I hung out with and no one ever was cruel and mean to me about how I looked or my obvious deformities. They all loved me for and sometimes despite the person I was. I have been so grateful for them.
I would work out as hard as I knew how to back then and try to eat how I had been told to eat in order to get in better shape.
I weight trained, ran almost daily for a few miles, then I would do aerobics or kick boxing videos. Just as I was instructed by the magazines I bought, I ate a piece of whole grain toast with a banana every morning for breakfast, a whole wheat sandwich of pb&j or meat lettuce and no mayo with grapes or an orange for lunch, and for dinner I’d eat what I felt like was a small portion of what my mom served as long as it was ‘low fat’ like pasta with a little tomato juice mixed in, or a baked potato and a tiny portion of lean meatloaf. I was learning the rules that all the magazines with the gorgeous, skinny models on the front were telling me to do and I was gaining even more weight when I was “good” and followed their advice. It was discouraging to say the least.
(Thankfully, someone explained carbs to me at some point so I learned how to slim down a bit from eating less of them. I just wish I could have explained food to my high school self. If I could go back in time and tell myself something, I think that’s what I’d talk to myself about. It wasn’t my fault that I’d received false information about how foods worked. That low fat does not equal healthy.)
Fast forward to when I was in college and I was blessed with new good friends who were studying the same things I was. One of those girls and I went on a double blind date with two cute guys.
Her date had the prettiest blue eyes I had ever seen. In a interesting turn of events, he was interested in me. He and I ended up dating after a bit and falling in love.
He knew from pretty much the beginning of our friendship that I had scoliosis and he’s always been very accepting of me. He knew that with my back the way it was, I may not be able to have kids and he always let me lead the way and make my own decisions about things that involved my own body. I love this guy. I tell you, he’s the best.
We ended up getting married and about six months after we did, I stretched a little funny and felt a pop and it turns out I ‘slipped’ a disk in my back that was already severely out of balance. Basically I created a spondilosthesis at my S1 vertebrae.
I was in excruciating pain. I had my husband drive me home that night and every bump was horrifyingly painful. It was awful. I laid on my stomach that night and could not move without cringing in agony.
Thankfully, with a little rest, things got a little better and I was able to go to a family doctor. She gave me a list of surgeon’s names to contact and a handicap parking tag because walking far was absolute torture for my back.
We went through the list and out of all of the surgeons on the list, some of whom were pediatric and others who were for an adult population. Only one would see me. The pediatric surgeons said I was too old and to find an adult doctor and the adult doctors said I was too young and to find a pediatric one.
As luck would have it, my husband, who was working at a car parts shop at the time, was at work one day and got the name of one of the surgeons in the area who had just performed back surgery on one of the people who came into the shop. We called right away and his was the first office who didn’t turn my case away from the get-go. However, just to get an appointment, I was on a wait list for two months.
While I waited those two months for an appointment, I dealt daily with the excruciating pain that my back was in. I also could hardly breath. When I would take a shower the steam alone would fill my lungs so much that I felt like I was being suffocated and I would end up hyperventilating and completely terrified if I took too long of a shower. I also had difficulty sleeping at night because I felt like my lungs were being crushed so I had to prop pillows around myself to feel like I was getting enough air.
Once my surgeon saw me and my situation he was very quiet and obviously upset. I had told him about my past history and how the pediatrician had not found it to be serious enough to send me to a specialist at age 12. He started having me bank my own blood for three months before my surgery as well as get an MRI, a CT scan and a pulmonary function test.
It was the pulmonary test that really proved how dire a situation I was in. My lung capacity was at 50% so basically I was like a person climbing Mount Everest daily because it was like I was being crushed by my own body.
When I had my surgeries it was in March of 2004. In my surgeries my spine was fused and the surgeon added rods, screws and four levels of metal cages all weighing about 7 lbs of titanium from S1-T3. I was in the hospital for twelve days and at the end of my stay, it was determined that I should stay at my mom’s house in a hospital bed until I got stronger.
It took me two months to gain back enough strength to live in my own apartment again. I literally had to relearn how to walk and move around. I had spent so much time lying flat in a hospital bed my muscles in my whole body had atrophied tremendously. I was very weak. I did all I could to gain back my strength as much as possible but I was only allowed to walk three miles a day which I did with the intent to heal quickly.
After a year post-surgery, my surgeon gave me the go ahead to have children or do what I wanted to do within certain guidelines. I was shocked and excited he felt I was strong enough to deal with those kinds of things–especially after thinking for the last six to seven years that I could never possibly have children safely.
In regards to giving birth, because my fusion is from S1-T3, I can not have an epidural (there’s no way to get into the epidural space). If for some reason I need to have a surgical birth, I would have to be put under a general anesthetic. Thankfully, 14 years later I’ve had four children vaginally, without an epidural. I may post my birth stories here if the mood strikes me. I’ve learned a lot about myself, life, birth and loss since my spinal fusion. I’ve gone back and forth a LOT about sharing my story and my insights because I’m a pretty private person. However, as I continue through my life and hear of others who are struggling with trials, some of them similar to mine, I think: “If I shared my story, could I help someone?” I don’t think I’m an amazing, remarkable person who has pain that is worse, or story or insights that are better or more relevant than someone else’s. I do feel that if I can help others by sharing, then I’m being selfish for not sharing. So welcome to my blog. Hopefully it will be a source of information and hopefully light in your life.
The Fused Mama 