A.S. Face 0461: Helgi Olafson
I am 29 years of age and was diagnosed with Ankylosing Spondylitis (AS) ten years ago. Like most people with AS, I was misdiagnosed before I was properly diagnosed. The docs gave me crazy pain killers and chalked it up to “Sciatica.” The pain only got progressively worse for the next six months. It was like I had to “warm up the engine” in the zero degree weather, just to get the car to move. Every single day, getting out of bed was the hardest part of my day. I was working as a restaurant server and a cook at the time, so the pain usually dissipated as the day went on. Some days it did not, but I never once called in sick.
During this time, my mother was determined to help figure out what was wrong with me. I was just a stubborn kid who didn’t have a care in the world. “I’ll be fine,” I always told her. She insisted on seeing a number of doctors, both general as well as specialists. I soon had an appointment with Dr. Steven Goodman, of Arthritis Associates of South Florida, in Delray Beach, FL. Dr. Goodman was familiar with the disease and all other aspects of Rheumatoid Arthritis.
After many X-Rays from different angles of my spine and especially my hips, he immediately suspected Ankylosing Spondylitis to be the culprit. His first step was to check for the HLA-B27 gene and, sure enough, I came up positive. Then it was on to the MRIs to confirm the diagnosis. The costs were outrageous.
The next step was to get the medication. Dr. Goodman had a few samples of a new drug called Humira. They were subcutaneous injections, but they really hurt and didn’t take away the hurt. I was then prescribed with ENBREL Etanercept subcutaneous injections. While waiting to be approved by the Encourage Foundation to receive my meds for free due to my financial income, we had to purchase four shots, which was a one month supply, for almost two thousand dollars. Luckily, this only happened once and I was approved to get the medication completely free and delivered to my door for the next year.
Even though my battle with figuring out what was wrong with me only lasted about six months, it was an extreme burden lifted off of my shoulders to know what was wrong with me. I would say that my mother was even more concerned after the diagnosis, so she stayed on the phone and internet and made connections with AS support groups and research studies having to do with AS and IRITIS and even Psoriatic Arthritis. All of these conditions have since been found and confirmed in my ancestry being all Nordic.
I continued to live a normal life, as long as I had my ENBREL. I even started a landscaping company at the age of 22 and was able to lift upwards of 250 pound tree stumps and rocks. I felt strong and confident and wasn’t going to let some disease keep me from my goals and dreams, no matter how “degenerative” it can be. It made me feel really awkward to go into the rheumatologist’s office at such a young age, when the other patients were always much older than me. It also made me wake up and realize that I didn’t want to be like them when I was older. I realized at that point that every choice you make throughout your life can affect the outcome of your future. Sometimes I think about where my progression would be if I had had desk jobs my whole life, or not lived near the ocean, or slept on a bed without a firm mattress. I am grateful to have been able to live a normal life with AS, unlike many that have not had the same luck and been as fortunate as I have.
When I was 25 years old and living in Scottsdale, AZ, I had a “flare-up” in my eye. It was extremely irritating and I could not stop rubbing it. After two days, the swelling got so bad that I couldn’t even open my eye. I had to go to the emergency room where they gave me some drops and it calmed down the inflammation. I had an appointment with an ophthalmologist the very next day, who diagnosed me with Iritis. Having realized that I hadn’t had a shot in over a month, I took one, and with the help of the dilating drops and steroid drops, my swelling did subside very quickly. My eyes have always been pretty sensitive and there have been other times where I have had Iritis flare-ups. So far, I have been lucky to have had very good vision with no need for a prescription.
My most recent scare with extreme pain due to AS was while I was living in Portland, Oregon and 28 years old. I had depleted my supply of ENBREL, not having had an injection for over six weeks. (This is the longest I have ever gone without having ENBREL in my system.) I could tell that I was hurting and I was in need of a shot. My insurance was about to kick in and I knew that I needed a doctor to renew my prescription in order to get ENBREL as soon as possible. I asked the doctor for something to hold me over for pain until I got my ENBREL. I took two Celebrex samples he gave me. It made me feel better almost instantly; but early the next morning when I woke up, my lower back and hips were in spasm. Every move I made brought tears to my eyes. I thought I was going to die. Eventually I was able to fall asleep again, after taking a few Aleve. I think my body may have had some kind of reaction to the Celebrex, and what made it worse was that I hadn’t had any ENBREL for over six weeks. The disease was obviously progressing. I needed to stop it by getting back on the ENBREL. The next morning was the only time I have ever called in sick to work, but I had no choice. I would be of no use working on the cooking line anyway. So I stayed home and rested and waited for my ENBREL to arrive the next day.
I haven’t waited to take the ENBREL for more than three weeks since the occurrence of my last big scare with AS and I haven’t experienced any major pain or lack of flexibility since. I have been taking multivitamins on a daily basis and stretching a few times per day since that scare.
I spent the entire summer of 2011 in Alaska, on an 87 foot wooden fantail yacht built in 1931 as the Chef for 15 people. She is called Discovery M/V. Her sleeping accommodations were not extremely comfortable, making it difficult to exercise, being captive on a yacht for 7 days at a time. Fortunately, I had my ENBREL, my vitamins, my stretching and my manifest your destiny attitude that helped me steer away from the pain. This seemed to get me through the summer and enable me to enjoy a really inspiring and somewhat unique experience that most people have never had the fortune of experiencing.
Returning to Portland in September, while looking for work as an Exec Chef, I facilitated my income through casual labor doing some home renovations. I also landed a job as a food judge for the open-call auditions for MASTERCHEF SEASON 3 with Gordon Ramsay. This TV series airs this summer on FOX Network. I flew all over the country to different cities every weekend, casting the potential candidates to become the next “MASTERCHEF”. I thought the home renovation work coupled with the flying would be extremely hard on my joints. However, it really didn’t affect me, as long as I stuck to my routine of stretching, multivitamins and positivity. Again I was able to work at something awesome and interesting and get paid for it! Wow, what a lucky life I am having!
From here, it only gets better. In early 2012, I moved to Waikoloa on the Big Island of Hawaii. I am working as Kitchen Manager and Executive Chef at Waikoloa Grill ‘n Bar in the Waikoloa Beach Resort. Living in Hawaii has given me the opportunity to further my knowledge and skills in the culinary industry, while affording me the ability to concentrate on becoming a healthier and better human being in general. My career keeps me in constant motion physically and is also mentally stimulating. I have eliminated unnecessary “clutter,” in my life and am able to concentrate on achieving personal goals and successes in my life. I eat three healthy meals a day relevant to the amount of energy that I produce daily.
Due to the cost, I have occasionally horded the medication (ENBREL) and not taken it every week as prescribed. I have done this for two reasons; the first reason being that ENBREL is very expensive and the second reason being that I didn’t want my body to become increasingly immune to its effects, considering I may need to take this medication for the rest of my life. There have been times over the past ten years when I have had health insurance or earned too much income in a given year to qualify for receiving the ENBREL for free from the wonderful ENCOURAGE FOUNDATION, meaning I have had no coverage. (I
have not had the financial ability to be able to afford the cost of ENBREL even with health insurance supplementing it.) So, there have been times, I have not been covered by either health insurance or the ENCOURAGE FOUNDATION. I took the injections of the medication when I felt that my body needed it. Most doctors have said this is not recommended. In my most recent examination by a rheumatologist, it was confirmed that I have more flexibility and movement in my joints associated with AS than most males my age with no arthritic condition whatsoever. I figured that I must be doing something right.
In addition to concentrating on my career, I have made time to compete as one of six long-distance paddlers for the Waikoloa Canoe Club for the 2012 season. I was the runner for team Po’o Pua’a at the LAVAMAN Waikoloa Triathlon, which is part of the inspiration to train to become a professional triathlete. My present goal is to compete in IRONMAN 2013, here on The Big island of Hawaii. I have registered to compete in the 26.2 mile Kona Marathon on June 24th, 2012 as well as both of the upcoming Keauhou and Waikoloa LAVAMAN Triathlons. I am currently biking a couple hundred miles, running about 50 miles and paddling about 25 miles per week. I train 30 to 35 hours per week burning about 4500 calories each training day.
With this goal of IRONMAN 2013, and through the long journey and rigorous training ahead, I have decided to raise awareness for Ankylosing Spondylitis. I know that there is no way that I will be effective in raising awareness for AS without the help of others. Anyone who might have an interest in supporting this cause or knows someone who may, and help me get to the top, please jump on board. Ultimately, my goal is to raise awareness of the disease and perhaps be able to help others with Ankylosing Spondylitis through education, research and general support. Offer your questions, comments and concerns. Any information or leads dealing with sponsorship of any kind are extremely appreciated and important to the success of this humble endeavor. Help me be a voice for AS awareness worldwide. I need your help. Networking is the key!
Please check out my existing fundraiser for AS Awareness through my running the Kona Marathon:
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