My name is Lianne and I am 44 years old. I didn’t know it at that time but my symptoms started in high school. I tried out for basketball. Every morning after practice I woke up and could barely move. I at first thought that I was just out of shape and needed more exercise. I lasted through 2 months of practice and it never went away. It got so painful that I quit basketball. Tried out for softball…same thing. Stopped sports all together. My mom took me to the doctor and of course I was told that it was all in my head.
I suffered with terrible joint pain and migraines all through school and went to many doctors. All of them said that it was all in my head. After so many “professionals” telling you that the pain was in my head you start to think that maybe it is. I gave up going to any more doctors and just suffered through it until about 10 years ago. I had some episodes with my fingers on my right hand not wanting to work and eventually the only one that I had that would work was my pinkie. I went to the doctor and after 3 years of seeing specialist after specialist and some crazy diagnoses the determined that I had a mini stroke. WHAT?!?!? I was 34 at the time. 33 year olds don’t have unexplained strokes. But no further testing was done and I went on about my business living without the use of most my right hand.
Five years ago I was driving home from work and my back started getting really sore. I got a couple of muscle spasms that were so bad I couldn’t breathe. That scared me to death. I had never had spasms before. Not like that anyway. When I got home I called my husband from my car (thank God for cell phones) and asked him to come help me out of the car. He pretty much had to carry me in the house. I couldn’t stand up straight and had this terrible sharp shooting pain that went from between my shoulder blades to my ankles. Every time I picked my foot up to walk another spasms. Through all the screaming and crying my sweet husband was able to get me in bed and comfortable enough to be able to breathe. The next day I decided that this was not in my head and I was going to yell at every doctor I had to for them to listen. I paid them enough they were going to hear me out.
My regular family doctor moved and a new one came in to take over his practice. On my first visit he went over my history and discussed all the MRI’s and xrays and such. He said that a person of my age and health shouldn’t have that many random episodes so he referred my to a rheumatologist. One xray and a bone scan later we had the answer. AS. I was both relieved that I wasn’t crazy, happy that someone had finally listened and very angry that no one had before. I was scared to death when the doctor told me that there was no cure and was a hard disease to endure. Which now that I think on it she hasn’t any clue how hard. Doctors can say they understand and that they know how bad it is. BULL! Until you suffer everyday with every breath you don’t know Jack.
THe more research I do on this hateful disease the more my past makes sense. I have always had sore ribs but I just thought it was because I am a big girl and well endowed. I always caught every little sniffle and cold that came near me and it always turned to bronchitis or pneumonia or some crazy thing. I have already had neck surgery because of degenerating disc pressing on nerves. It all makes a lot of sense now and I can’t think about it a lot or I get pissed.
I know, like all of you, that everyday is a struggle. Between the pain and the fatigue, the enormous amount of pills and shots that we have to take, the doctors visits and trip to the pharmacy it gets hard to take. And then there are the looks from the people that just don’t get it. You look fine! You are too young to be that sick! You just need to exercise. I swear sometimes I could literally punch people in the nose.
I am still working with my rheumatologist and pain center to get the right meds that will give me some of my life back so I am still waiting to get to the point that I don’t let AS dictate my life. I am not giving up hope. I know there is a light at the end of this tunnel. I had to wait for years to get this far I now I can be patient for the rest.
For anyone that is reading this that is new to the AS world my advice is to find a good support system. Good doctors, friends or family that will let you do what you are able to do and be there to help you when you can’t anymore. And people to listen to you cry and scream and curse the world because there will be lots of those days. But most of all no one goes through AS the same way. You have to take care of YOU. Only you know what you can do. Don’t be an idiot like I was at first. When I would wake up and feel kind of good I would go rake the yard or try to weeds the flowers. I would end up in bed for a couple days. Enjoy the good days. Go for a gentle walk or get out and go visit a loved one. Most of all don’t forget to thank GOD for the good day and rejoice in it. You never know what tomorrow holds. It is sad that is what my life has become but that is my new normal.
Most of all don’t be afraid to ask for help when you need it. And don’t be afraid to call “UNCLE” when you are tired and need to take a break. Only you know how you feel. No one can tell you that. Even another AS suffered can tell you that. We all deal with this mess differently. Be your own advocate at your doctor. I bet you know more about AS then they do. If you find something on the internet or someone tells you something that you want more info on as them. If they tell you something that doesn’t sound right….ask them. THey now what they read in books and medical studies. They don’t know the real deal on AS. We have to be a team with the doctors to get the right info. Just don’t be afraid to ask questions.