Hi there, everyone. My name is Ronna. I am 25 years old, female, and I found out 2 years ago that I have AS. I am sure everyone says this, so it comes as no surprise to all of you to hear that I hate it and I am having trouble with it, in more ways than one. I am so glad that I found this site.
It started around 3 years ago, in my hips and lower back. There were some days I could barely walk, which was unfortunate because I worked at Tim Hortons at the time. I had trouble with stairs. I couldn't sleep at night. Not being the type to go to the doctors for every little thing, I pushed it back, and pushed it back, until one day where I was so bad my father in law insisted that I get help. My family doctor was shocked to find that the lower part of my spine was fused, and sent me for xrays asap, and to see a "Rheumy" (as I have seen on the site, and it is easier to spell!) It was then I found out, and my life just seems to have never been right since.
I have a pretty close group of great friends, and my husband and families are great. But, no one knows what this disease is. No one can really understand, as much as they want to. I don't even understand, and unfortunately, neither does the Rheum. who diagnosed me with it in the first place. They do not know exactly why I got it, and I am the first female patient of theirs of my age group. Not very encouraging.
The worse thing that I can say is that I don't feel that my doctor helped me enough at the start. I realize that I am a grown adult, but, sometimes when you are faced with stuff that has you baffled, and you are dealing with constant pain, you just aren't thinking right. I left the clinic after a long 2 hour session trying to understand what this disease was with this prescription for "Celebrex" They were to arrange a person from the Arthritis Society to come and help me. This was all I knew. I figured that this person from the Arthritis Society would help me, but, she wasnt very nice. She only came to my house once, gave me pamphlets that scared the heck out of me, told me to do deep breathing exercises so that my ribcage wouldn't fuse, and never came back. Later, I found that she is the only person from the society in this rather large area, and she is just busy. But, I was so disheartened. I was so confused. And no one told me that diet made a big difference. No one told me that I could take vitamins or other things to help. Like I said, I could have found that out for myself, sure, but, I didn't at first. If I had been told the day it happened to change the way I eat and so on, I would have. Worse than that, the Celebrex did nothing but make me irritable and sick to my stomach, so I was taken off of it. That last time I went to the Rheumy, I I was so sad, and sore and scared. I had thought they would be used to that, but, it seemed like I was just one more face, I just happened to be a younger face than they were used to. I got another prescription, for Naproxen, that I asked for myself because I had used the U.S. pill Aleve and it helped on the days I could barely walk. When the doctor handed me the prescription, he said they couldn't do much more to help, and if I wanted to, I can schedule another appointment, but I didn't need to. I said no thanks and left. On the way back, I told my friend who went with me that I never wanted to go back there again.
That was a year ago. I have since stopped using Naproxen as well, due to my stomach. I use Robaxacet when necessary, and sometimes I go through it like it is candy. My family doctor has since retired, and I have no family doctor. In the last few months, it has worsened, so, I have bit the bullet and called the doctor for an appointment.
To make a long story longer, I basically do not know what to say to my doctor. I thought someone could help. Since I found out about this, it has spread from just the hips and lower spine to halfway up the back, and my neck and shoulders too. And I don't know what I am doing wrong. I sleep, sit and walk the way the Arthritis Society pamphlet told me too. I try to exercise as much as I can. I like Yoga, and Step Exercising, and even light weight lifting. And I mean light, I use 1, 2 and 3 pound weights :)! I have been researching a lot on the web, and I have started taking Glucosamine Sulfate, Vitamin E, and I am trying to put more calcium in my diet. I also try to stay positive, I know my message probably doesnt sound that way, but I am just really angry about this! I need help managing this pain, and I do not know what to say to the doctor. I feel a bit let down by him, and I wonder if I will just leave feeling the same way again. I wanted to ask him about alternative medication I have tried and found helpful, but I do not know how to go about doing this.
I hope this message isn't too long that no one will read it. Any advice is good advice! Thanks for listening!
