A.S. Face 0770: Rosealie Roybal
My name is Rosealie and I am 40 years young 🙂
My first episodes of AS started after I had my 3rd son. In 1996, 3 months after I had my Golden Child (who has AS as well) I went for a jog with my little cousin at the track. Was doing fine with my run until suddenly I dropped to the ground in severe pain. I literally thought I had broken my left hip because the pain was so unbearable. As months continued with the pain and many appointments with doctors, nobody could tell me what was wrong with me. Eventually the pain wore off and I continued living my life. Every now and then the pain would come back. While working at a credit card company and walking many flights of stairs in 1997, the pain came back again to the point where I couldn’t walk again…Again, I am seeing doctors and went to a chiropractor who eventually told me, “something is seriously wrong and you need to see a real physician.” Many doctor appointments again and “nothing.” In October of 1997 I became pregnant with my 4th child and ended up in the hospital because of a sever kidney infection. In the hospital for about two weeks and again, doctors couldn’t explain why the pain in my hip but could only treat me for the kidney infection. In 1999, I finally went to a doctor who literally told me I had gas LOL I laugh now but was so upset then. The nurse who was helping the doctor at the time told me about a doctor she knew in another city. An Orthopedic surgeon who I was able to see right away. Within five minutes of my first appointment with Ortho, he requested blood work for the HLA B27 gene. The results came back within two weeks and he referred me to an RA. March 2nd is my birthday which is the day I wen to see the RA. He was the one to tell me I was diagnosed with Ankylosing Spondylitis and gave me a pamphlet and also showed me in my xrays where I was already fused. He says, ” I don’t know much about this but here is a pamphlet for you to read and also, if you have 4 boys, more and likely one will get it.” A 45 minute drive home on my birthday, with thoughts of ” why my boys?” I literally cried all the way home while driving and got home in disbelieve and hugged all my boys. I let it soak in and told my parents. I finally now know what I have and it sure in the heck isn’t gas LOL The ending months of 1999, my exhusband was able to get an honorable discharge from the Marine Corps due to my disability. When he finally came home we were living a normal family life and established new doctors with great insurance. Found my new primary doctor and RA…Excellent doctors!! During the time of seeing my docotrs I was prescribed many different medications like Celebrex, Remmicade, Prednisone etc….Due to all the medications I ended up with ulcers to the point where I had to be hospitalized for a week. On Halloween of 1999, I suffered a heart attack. Had no clue at the time of what was going on because I had little information on AS. My RA doctor told me, if I ever feel pain like that again, to call 911. During this time, when I was prescribed remmicade through IV, during the 5th dose, I suffered an allergic reaction. To the date, I felt like a guinea pig because none of the prescribed medications were helping me. In July of 2000, there was a domestic violence issue with myself and my exhusband and it was not a good thing at all. I divorced him right away but now the abuse had taken a toll on my AS. Months go by and I get a job and am now a single mom of 4 good boys. During the time that I start work, my AS is in remission. About 6 months into working, my AS starts to flare up. Now I am going to work, traveling during break to get physical therapy and going to work on my walker. My doctors feel I have had enough. Now I am collecting disability from my job and still determined to find other work. I don’t give up easy LOL so now, I am going for regular check ups and on the waiting list for Enbrel. Time passes by, 2001 I feel the pain in my chest again but it was a little different. At the time, I had a bad cough. But I remembered what the doctor told me about feeling that pain again. I call 911, go into the hospital, xrays are taken and now I have a fractured rib due to a cough because I now I have RA and Osteopenia. Why? Because I was on such a high dose of prednisone. Time to wing me off, and at this time, I am starting to give up on meds because nothing is working. After this time has past, I am now not on my exhusbands insurance and my doctors can no longer take care of me. I applied for SSI and was approved within 3 months because of the history of my AS. Now I have new doctors and don’t like them one bit…Medication, physical therapy and yearly check ups. To this day, I have finally taken my AS into my own hands. The emergency department now thinks I may work there 😉 because throughout the years, I would only go to ER instead of my doctors. Besides my yearly pap smears and check ups. I recently found out, that I qualify for a type of insurance so I can go back to my old doctors.
In this experience of AS, I figured out that life changes can change at any moment. (any second, for that matter) Researching all medications, researching AS and other related medical elements, having a great support network of family and friends, ( which I didn’t have much family support) but my friends were always there, but researching periodically because new findings or new meds come to surface. My lil men in my life have been such a true blessing in my journey with AS. They have always been my nurses. As an individual with AS, I feel blessed with the woman I am today and who my children are. My 3rd son also has AS and Chrons disease and because I know or have experienced so much, I am also his doctor. 🙂 3 of my 4 boys are carriers and positive for the HLA B27 gene but only my Golden child has the disease. he has been experiencing problems since he was 3 years of age.
As of today, my AS has taken its toll all the way up to my neck. I now sleep in a recliner because its the most comfortable for me. It is very hard and uncomfortable for me to sleep on my stomach or my back. I even tried going back to school online and because I would set my arm too long on my computer desk, I ended up with numbness in half my hand. I almost feel like a football player with all my wrist bands, elbow bands, neck thingys LOL all I know is I stay smiling through my pain and discomfort. PAIN is my middle name with FAITH in front of it. 😉 I exercise daily but I am learning to NOT exert myself because I will put myself back on my butt. I also pray daily to carry out my day with a positive attitude and pray there will be a day where I have NO PAIN. My children help me with my cleaning but there are days where I try to do as much as I can for MYSELF. Life is what you make it with whatever hand you are delt with….just have to keep it positive 🙂
I do believe when you have a great primary and RA, you tend to feel more comfortable and not as crazy in the things you feel. A great relationship with your doctors is what you want. I can’t wait to see my old doctors again….at the time I was seeing him, I was his youngest patient but NOW? I think all he would care about is to see me smile as he helps once again.
To all those with AS, know you are not alone and when you feel alone, know that there is someone praying for you 🙂 ( ME and others ) Always continue to hold your chin high and your head higher because we are Faithful survivors!!!! I could go on with things that have happen in between but I think the basics is what is needed…..God Bless and always stay positive!!! I love all my new AS friends…thank you so much Cookie!! You are the BEST of the BEST!
aka Precious Rose
California United States of America