Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Topic Options
#264822 - 03/11/14 06:49 PM Denial...Now Coping!
Grace_22 Offline
Registered Visitor

Registered: 03/09/14
Posts: 2
Loc: Southern California
I'm new to a messaging board like this. I'll just start with my story.

I first started experiencing pain in my first semester of my senior year in high school. It would start with leg and lower back pains while walking to classes. The pain became so bad to the point where I had to start doing independent study mid-way my first semester of my senior year. I had severe flare ups every night only getting at least one hour of sleep. I went from doctor to doctor getting X-rays and MRIs. Until finally they sent me to the pain clinic and physical therapy. I was convinced this pain was all in my head and so was everyone around me. I graduated from high school and the pain clinic with pain killers and breathing techniques. I eventually went to community college dealing with pain everyday as if it was normal. When I decided to go to film school in Los Angeles is when my problems started again. I had an unbearable flare up to the point where it hurt to do everything. I would almost cry every night and not having the same support system I had back home I felt completely alone. I was angry and depressed still going to classes with a cane to help walk. I would pray to God every night hoping for an answer. I refused to believe that I could do this to myself like I did in the past. Finally after months of frustration and a couple of ER visits for pain killers, I was finally referred to a rhuemetologist. After a couple of tests, I was diagnosed with Ankylosing Spondylitis. I was prescribed Enbrel and I thought that was the end of my journey. I've been on Enbrel for the past year and have gotten sick more than usual. My wake up that I had to change my lifestyle came a couple of days ago. I pushed myself too hard physically and had the biggest flare up since before my diagnosis. I've finally realized that as much as I wanted to reduce my disease into just taking medicine once a week, I couldn't. I have to make a lifestyle change.

I could have never gotten this far without the support of my family, my Los Angeles family and God's strength to persevere . No matter what has happened they have always been there and continue to be.

I'm here to meet others with the same condition I have. I want to talk to others who understand what its like to have bad days as well as the good.

Top
#264836 - 03/12/14 07:13 AM Re: Denial...Now Coping! [Re: Grace_22]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1259
Who are you seeing in Los Angeles. What is your Rheum's current thinking about Enbrel.

Welcome.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

Top
#264855 - 03/12/14 01:28 PM Re: Denial...Now Coping! [Re: Grace_22]
Grace_22 Offline
Registered Visitor

Registered: 03/09/14
Posts: 2
Loc: Southern California
Dr. Ratiner, he has encouraged it with caution. There are a lot of potential side effects to Enbrel like there are to any other drugs. It has helped a lot though.

Top


Moderator:  ElinAslanyan