A story about PAIN/AKA The Longest Post Ever



When I was nine years old I started to complain of back pain. No one, except my mother believed me.
"You're nine years old. You can't have back problems."
My mother took me to a chiropractor and he told me I had some spine curviture, but nothing was really done about it.
When I was about ten years old I tore some ligaments in my knee.
I went to a weird high school. It had two "majors", Law and Dance.
I majored in Dance. I had always wanted to be a dancer, but the most I had ever done was take a ballet class.
I was very proud of myself, because you had to audition to get into the dance program and I made it.
When I was about fifteen, my knee started to really hurt me. This was in addition to my constant complaints that my back hurt.
I was told by my doctor that I had to stop dancing because my knee was deteriorating.
I was sent to a physiatrist.
Dr. Schacter was awesome. My father and I would go together twice a week. We became very close with him. He never doubted my pain and did everything he could to help me. He was the first one to tell me that I had a genetic condition that caused me to have hyper-elastic joints. Although, I did not have the flexibility usually associated with hyper-elasticity. He also told me that I was eventually going to need knee and shoulder surgery.
I was seeing this doctor for about a year and I was feeling pretty good. (Although I still wasn't allowed to participate in the dance program.)
Then, one day I got a call from my dad. Dr. Schacter didn't come upstairs for dinner one night. His wife went to see what was taking him so long. She found him with his head resting on his desk, dead. He was only in his 50's and he used to compete in triathalons. I was very upset and didn't see another doctor for almost two years.
The spring of my senior year of high school things were going well. I was excited about graduating and going away to college. Then I started to get REALLY tired. I woke up one morning and couldn't swallow my own saliva. I was taken to the hospital and diagnosed with a very bad case of Mono. I was very sick for months. My spleen was very enlarged. I had to leave school. I was very depressed. I didn't fully recover for about a year.
The night of the senior prom I went to the after party. I was dancing and all of a sudden my back started to hurt worse than it ever had before. I had thrown my back out for the first time. I was two months shy of my eighteenth birthday.
After I recovered from the Mono, I had to make a decision. I couldn't go to the college I was supposed to go to because I dropped out of high school. I got my GED and was deciding whether to go to Photography school or Culinary school.
I chose Culinary school because I thought I would have a better earning potential. I chose the Pastry Arts program because I was a vegetarian.
I did very well at culinary school despite my aches and pains. I graduated when I was 20 years old.
My first job after culinary school was with a place on Long Island that specialized in cakes. I loved it. It was owned by a husband and wife team. The husband handled the business aspects and the wife was the chef. They took me under their wing and taught me more that I had learned in culinary school.
It was a very physically demanding job. I was on my feet for a MINIMUM of eight hours a day, and you would be surprised at how much a wedding cake weighs.
I remember decorating cakes with tears streaming down my face because my back was hurting so much. I would often spend my lunch breaks lying on the floor in the office.
During my third year with the company I started seeing a chiropractor on a regular basis. It helped a little bit. I left after three years to be with the husband (who was then the boyfriend). I moved to Boston.
I worked for a bakery for my first few months there, and I hated it. It made me feel very bitter and burnt out towards the culinary industry. I decided I needed a change of pace. I became manager of a cafe in Harvard Square. I had a great time and it was much less physically taxing than being a chef, although I was on my feet a lot.
We thought we were going to move back to NY for the husband to go to Medical School. I told the owners of the cafe I would be leaving. Then the husband got into Harvard Med, and we found out we'd be staying. It was too late they had already found someone to replace me.
I had become friendly with one of my customers and she offered me a job as her nanny.
During the time I worked at the cafe and when I was a nanny, my back would bother me occasionally, but certainly not as much as when I was a chef.
After about a year as a nanny the family moved away. I got a job in a retail store as a manager. I hated it. I was on my feet all day. My schedule was crazy. I wasn't going to the gym or doing very much exercise. I had always been thin, but about a year after I moved to Boston I gained about fifteen pounds. My metabolism had caught up with me, in addition to the fact that my job wasn't as physical any more.
After about nine months I left the retail store. I decided that I wanted to have a job that I loved and I didn't care if I made very little money.
I got a job at a little pet grooming shop. I was the assistant to the owner. It was great. I got to bring Dexter to work with me and I was surrounded by animals all day.
It was, however very physical. I had to lift reluctant dogs into the bathtub or on to the grooming table. My back was a constant problem and my shoulder started to hurt. One morning I woke up and I couldn't lift my arm and I was in a lot of pain.
I went to the hospital and found out that my shoulder was deteriorating and VERY inflamed. I couldn't go back to work.
I did physical therapy for four months to try to delay having surgery (I was getting married that summer).
I decided to go back to being a nanny. I did that for about seven months and then the husband and I decided that I should take some time off before we moved back to NY. Our plan was that I was going to work for about a year when we moved to NY, save some money, and then try to get pregnant.
It was during this "time off" that we found out that two people very close to us had cancer. Also, my father had three surgeries in NC and someone else very close to us had two surgeries in NY. I was there for all of the surgeries. I did a ton of traveling and it wasn't the relaxing "break" it was supposed to be.
The move to NY was not easy on me. There was a lot of lifting and bending that had to be done. A few months before we moved and right after we got to NY I had several days where I woke up and could not move my right arm.
We moved to NY June 28th (our one year wedding anniversary) of 2004. By August I had started my own business called The Multitasking Chef. I was going to craft fairs and selling my baked goods. My shoulder was killing me, but I pretty much kept it a secret.
One of my best friends was getting married October 2nd. I was a bridesmaid and I was making the wedding cake. The week of the wedding my back went out. It was bad. I went to the hospital and was put on codeine, muscle relaxers and 2400 milligrams of Ibuprofen a day. I did the wedding cake with tears streaming down my face. The actual day of the wedding I felt better, thank god.
During the fall my business was doing really well. I was even featured in a news piece on a local TV station.
BUT, I couldn't ignore my shoulder's constant cries for attention.
I finally went to the doctor in the beginning of December. He had a long talk with me. He said the interior of my shoulder was wearing away because it was too loose. He told me I couldn't be a Pastry Chef anymore. He said all of my joints were loose and if I continued to do any job that was very physical or involved repetitive motion, I would keep injuring myself.He said I needed to come to terms with the fact that I was "handicapped". He scheduled my surgery for December 23rd.
Telling me I couldn't be a pastry chef anymore was crushing. That was the only thing I was trained to do. Here I was at 28, with no career, and I couldn't afford to go back to school.
When he opened me up for surgery, he realized that I had completely worn away the cushioning in the front of my shoulder. No wonder I was in pain!
The recovery for my shoulder was very difficult. My mother stayed with us for six weeks. At first I was in a lot of pain. I could barely move my arm. I had to wear a sling for three weeks. I could only take it off to shower and for physical therapy. I couldn't even shower by myself. My mom or the husband had to help me. I couldn't prepare food or even feed myself. I couldn't dress myself. I couldn't walk the dog. It was horrible. I had physical therapy 2-3 times a week. I loved my physical therapist. It was grueling. Progress was very slow. On April 1st my PT transferred to the spine therapy center. Ironically, at our last appointment my back was out. I joked "don't be surprised if you see me at the spine center". Ha Ha.
I didn't like my knew PT. But I kept going for therapy. My last PT appointment with him was May 2nd because my insurance company denied me any more visits (don't even get me started on that).
On May 3rd I went to a Cafe Press meet and greet. I had a great time, but when I got home my back was hurting. This was nothing unusual, I just chalked it up to wearing heels all night. The next morning when I woke up, my back was hurting me, but again, nothing unusual. I rember lifting our full laundry bag onto our bed and thinking "wow, my back really hurts". As the day progressed the pain got worse. I called the husband at work and said "my back is out again", a line he's heard one too many times. Usually, when my back goes out it resolves in 2-4 days. This was not resolving. It was getting worse every day and when I started to get pain and numbness in my right leg I knew something was not right.
I went to my shoulder doctor on May 11th for a routine check up. He took one look at me and sent me to a spine specialist. On the 13th I went to the spine guy and after he examined me he said he thought I had a ruptured disk.
That night I had my friend's bachelorette party. I remember crying on the husband's shoulder saying "I just want to be able to go to my friend's party and I have a good time". I went to the party and grit my teeth through the pain and somehow managed to have good time. Thank god for drugs.
That weekend I had an MRI. I rember when it was over and I had to get up off the table, I was in excruciating pain.
The doctor called me on Monday and said sure enough, I had a ruptured disk and I was compressing my nerves (hence the pain and numbness in my leg).
That Thursday I had an epidural injection, in hopes that it would relieve some of the inflammation. Finally on Monday I felt some relief. I was able to go to my friends' wedding and make the wedding cake, without a huge amount of discomfort. However I was still getting the pain and numbness in my right leg.
In the last couple of weeks the pain has intensified again. So, today I had another spinal injection. Please god let it work.
I have started spine physical therapy. I am back with the PT who I adore. He just keeps shaking his head in disbelief that I'm at the spine center.

I know that there are people a lot worse off than me. But, I cry. It might be selfish, but I cry.
I have pain every day. Either my back, my shoulder, my knee, or some other random place. I know that it must suck to be married to me, to be my parent, or to be my friend, because I'm constantly complaining. My back has gone out numerous times since that first time when I was seventeen, and I have been on crutches eleven times since I was ten.
I can't do "normal" things without being in pain. I can't go to the gym, I can't ride my bike, I can't go on a hike,I can't carry the goceries or my suitcase, and going to the movies is an ordeal. Everyone around me is constantly reminded of my limitations, and I hate it. It's not fare that my husband has to work 80 hours a week and come home and do the dishes and the laundry because I can't. It's not fair that I bring home no money.
I live in constant fear. What's next? Will my knee have to be operated on? Will my back have to be operated on? Will they have to cut through my tattoo? Will I have another ugly scar? Will I ever get a good nights sleep?
Whenever we have a big event coming up, like a wedding or a vacation I wonder "will my back go out?"
I keep hoping for some miracle answer to all of my physical problems. For a while I thought Yoga might be the answer. I've heard "Yoga changed my life!"
But, my doctor and physical therapist told me that yoga is the worst thing I could do because something could slide out of place. So, I'm looking for a new miracle.
I want to be strong. I want to go on a rafting trip and go hiking and be in great shape. Everytime I see a movie where women are kicking ass (Charlie's Angels, Mr. and Mrs. Smith) I think "I want to be able to kick some ass"
But, I just can't.
My latest fear concerns pregnancy. We were going to start trying to get pregnant soon but, I'm in no shape to carry a baby.
Women's joints get loose when they are pregnant and since my joints are already too loose, it may cause real problems. Also, women who've never had back problems before have back pain when they are pregnant. With my back the way it is, what will happen to it if I get pregnant?
Why is evey fiber of my being telling me to have a baby if my body isn't capable?
Here I am almost 29. No career. I ache to have a child. I can't explain it, but I feel like the reason I was put on this earth was to be a mother. What do I do next?
And for all the trolls out there who will tell me to adopt a baby-we don't make enough money to be considered for adoption.

Part of the problem with my "handicap" is that you can't see it.I'm not in a wheelchair, I don't walk with a limp (well, most days). So, people don't take me seriously, or realize the severity of my condition.

I just want to be normal. I hate feeling fragile.
If I'm this bad at 28 what will it be like when I'm 68?

I am trying my hardest to get better. I will do my physical therapy religiously.

I know I am being selfish. I know I should be thankful for what I have.

But, as I sit here with tears streaming down my face from the pain, I just want to
give up.

Is it too much to ask for one day without pain?