A.S. Face 0204: Shelley Perkins

I thought when I did this that I would give everyone my timeline of symptoms, my struggle to get numerous Dr.s  to listen to me. It took 13 years of going to ER’s not being able to walk, PC Dr.s and my own research for “back problem” fixes. I decided that the end of my diagnosis road was most  pertinent.

Seven months ago I was on a journey to get healthy. I had quit smoking, started excersing because my back hadn’t hurt in a  year or so, and eating right. I even was up to running 3 miles, I wanted to do a 5k. When I started I couldn’t run 20 feet.  I had lost 35 lbs and was feeling like I was on the top world. I had no idea I was capable of doing these things. I even was looking at schools to be a personal trainer. I wanted to give other people who feeling that I had. I felt better than I had my entire life. Everything was coming together in my life Then..

Seven months ago a joint in my finger was hurting, no biggy right. Throughout that whole day it started going through my hand. It was weird to try to flip my turn signal on in my car and it hurt. The next few days it progressed to all of my joints. I decided to call my dr. I don’t do easily because they don’t seem to do much for me. The dr. did a bunch of blood tests and gave me prednisone (I have a von willabrands, a bleeding disorder, so no anti inflammatory for me L)  About a week or so later I went back in for the results. He told me I basically have indications that I have inflammation somewhere in my body. He said he was sending me to a rymotoligist . This took two months, in the mean time I am still hurting all over. I was also starting to have trouble straightening my elbows.  I found out you shouldn’t try to do a pull up. When I did that my elbows were stuck at a 90 degree angle for a month.

When I finally went to the rymotoligist they did a physical exam, more blood work, and x rays. A month later I went back, it’s 5hrs away so this was a big to do. He told me I had ankylosing spondylitus. He prescribe sulfasoluzine. At that point the fatigue was kicking my butt. If I was able to get the basics done in a day I did good. It really helped with the fatigue. I felt way better, the pain was defiantly still there but I felt like I had the strength to fight through.  We couldn’t start any other treatment because I was getting ready to have surgery.

Now seven months later I am getting ready to start Humira. I am scared  about the side effects but in the 7 months since my finger started hurting I have more bad days than good. Most days that I survive without saying I give up I feel good about. I don’t want to live my life like that. I feel like I have lost all that hope I had just a short time ago. I try to exercise still when I can, but that is usually only maybe 2 times a month. Slowly learning that exercising is good for a normal person, not so much for AS sufferers.  I think it’s funny because if I could exercise I know my mind could handle the pain more. I go day to day and try to focus on the present. If I can notice beautiful things even when I am in pain I will be ok.

I am a devoted mother to 3 beautiful kids that depend on me to be there for them.  They know mommy has ouches and that mommy does the best she can. I have had many people tell me to go apply for social security and I tell them that, that for me , that would be giving up at this point. I am not giving up, I will live my life and nothing will stop me. Especially AS, I am only 27. I still have a lot of living to do.

My name is Shelley and I have AS.

Coos Bay, Oregon United States of America

“Be the change you want to see in the world” Gahndi


7 Responses to “A.S. Face 0204: Shelley Perkins”

  1. I am on Humira and it has changed my life!! Good Luck!

  2. Thank you for sharing your story. I am 29 and was just diagnosed in November. I just started Humira last week, so the verdict is still out. I also have 3 kids, so we are in a similar boat.

  3. Dear Shelley,
    Thank you so much for sharing your story with us. I am so glad that your diagnoses came quickly and giving you a jump start on fighting this disease.
    Sincerely Cookie

  4. Thanks for sharing your story, Shelley. I was on Humera for a couple years . I had no complaints 🙂 Good luck (hugs)

  5. Shelley, you must get back to exercising as this will be better than any drugs at maintaining your posture and overall strength. Drugs should be to enable you to exercise not just relieve pain. Do not despair as today’s drugs are much better than they were in the 1970s when I was diagnosed.

    You should do stretching exercises every day for 1/2 hour and you will feel much better. There are dvd’s available in England with all the exercises on.

    Stephen

  6. Thank you everyone, all of you inspire me to keep going even when my legs don’t want to let me. On the days I wake up and can move freely I excercize. It’s usually walking or light yoga. I am still learning what my limitations are. It’s taking me a while. I am very hard headed so this is hard for me. I started eating meat too, which has helped ( I was a vegetarian for the majority of my life) I have a goal of doing as much as I can to avoid some of the bad parts of this. I have to know I did all that I can.

  7. Thank you for your courage! I get what you are saying.

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