A.S. Face 0461: Helgi Olafson

HelgiHello my name is Helgi Olafson.

Aloha,   I am a Canadian born health activist and amateur ENDURANCE athlete from Hawaii.  I am racing triathlon and raising awareness for ankylosing  spondylitis (AS), which is a degenerative autoimmune arthritis, involving fusion caused from pain and inflammation of joints.

I am 31 years of age and was diagnosed with AS twelve 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 Rhuematoid 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 Seasons 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 worked as 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. 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 in 2012, I was able to make time to compete as one of six long-distance paddlers for the Waikoloa Canoe Club. I was the relay runner for team Po’o Pua’a at the LAVAMAN Waikoloa Olympic Distance Triathlon. This inspired me to train to become a professional triathlete. My goal from that point forward was to compete in Ironman World Championships, here on The Big island of Hawaii.

Being that I am training under Coach Thomas Vonach, from ENDURANCE Team with a goal of qualifying for Kona at Ironman Canada this year, I am currently biking a couple hundred miles, running 30- 40 miles and swimming about 5 miles per week. I train 20 to 25 hours per week burning about 4500 calories each training day, but this all varies depending on what I am training for.  As a professional chef, I understand the value of proper nutrition.
My rule with my body is that I listen to it and give it what it needs.  That why I choose to take nutritional supplements from Ignite Naturals.  On a typical training day, I start with oatmeal or grits with butter (or peanut butter), salt and berries, and maybe even some dark chocolate.  Also in the morning, I fill a bottle with one scoop of plant-based GSH Ignite Pro Series and one tiny scoop of one of the many great #INRefresh Electrolyte flavors.  I also take one tablet each calcium, magnesium, and Spirulina.  Then I fill another two bottles.  One just like the first, and another with Ignite Naturals Pure Carbs, which are long burning, complex carbs made solely from brown rice solids.  Brown rice should really be every endurance athlete’s best friend.
Knowing that I will be able to refill with water along the way, I bring another two servings of the same mix of Pro Series/IN Refresh.  If I am going longer, I bring more.
On top of this, I keep salt tabs with me in addition to the delicious #INReload brown rice based energy gels, made with all natural ingredients.  Mango Peach is my favorite.
After the training, I eat, alot.  RICE if needed (rest, ice, compression, elevation), and then jump in to the countless hours ahead to perform the ever changing duties of HOF.
Please see my race schedule and results here:

http://www.helgiolafson.org/raceschedule

I have made my mark in raising awareness for Ankylosing Spondylitis. I know that there is no way that I would be effective in raising awareness for AS without the help of others who want to show their support.

I am so lucky to be able to train in Hawaii for part of each year and I can’t wait to race on my home course.  For three years I have been putting in extremely hard work, both physically and mentally and each difficult step has been a truly valuable and life changing experience for me.  No matter the time I invest, it will have been well worth the wait to reach my goal.  I am here to continue making a difference.
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 and arthritis. I have been doing this professionally since I started my nonprofit organization called Helgi Olafson Foundation. My life consists of training and competing in ENDURANCE sports and specifically triathlon. Education and research are also extremely important along with general support to and from the AS and Arthritis networks.

I have been able to successfully take a hold of my Ankylosing Spondylitis and I have been carrying the torch for a new and very aggressive way to manage my autoimmune disease. It may not be for everyone, but it sure has helped a lot of people so far. I have had the chance to educate and inspire and it feels GREAT!!!

Walk Your A.S. Off 2013 was the second annual collective walk that lasted over two months and it was a great way for people to start and continue habit-forming exercise. I was captain of Team ENDURANCE for Ankylosing Spondylitis and we ended up being responsible for over half of the collective walking steps. Our goal as a community was to reach the moon, which works out to be about 478 million steps. Team ENDURANCE used this platform to help motivate others to get moving.

I have developed a great presence in the Hawaii athletic and culinary communities as a chef, an athlete and a community volunteer, sharing positive experiences with people of all ages, including kids, seniors, and handicapped.  The smiles are what keep me going.

My goal is to perform at my greatest ability in each and every race I enter, helping to raise arthritis awareness as a beacon of hope for those who may be less fortunate due to the long term effects and progression of ankylosing spondylitis and the over 200 forms of arthritis worldwide.
Please take some time check out my website: http://helgiolafson.org

Hawaii, United States of America

 


15 Responses to “A.S. Face 0461: Helgi Olafson”

  1. Hey Helgi, i wish I had your determination…Lots of Luck with the Ironman!!!!!

  2. great story, thanks for sharing.

  3. Thank you for the encouragement. You inspire me.

  4. Think I will have to have a lie down just reading your story tired me out . good luck with the A.S project..

  5. Dear Helgi,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  6. Such an inspiring story! As a chef have you changed your diet to help fight the inflamation of AS??? I have been on the IBS no-starch diet and swimming an hour every other day. Between the two I have been off NSAIDs (too scared of Enbrel side effects) for a couple of weeks. Just curious about your diet considering your expertise combined with AS.

  7. It is a prevailing theme through many of the personal struggles on Faces – the hoops we have to jump through just to get insurance coverage in this country. God help those of us with pre-existing medical conditions if health care reform is repealed.

  8. Thanks for sharing your story with us. At age 50 (diagnosed with AS at age 22) I went back and got my black belt. I take no meds except for Naproxen and Tylenol, though I hope to be able to get a pain med that I can ‘take as needed’. Moving, for me, has kept the fusing at a minimal and helped me deal with the stress of having AS, RA, and a crooked back. Keep moving and inspiring others. Elizabeth face 40

  9. Wow!! I didn’t realize that I had so many comments on this Story until now. Thank you all for the awesome responses. Please continue to follow my blog as I attempt to reach out to spread the word about Ankylosing Spondylitis!! I placed 55th out of 450 in the Kona Marathon, which was the first Marathon I have ever raced. That put me 5th in my age group with a time of 3:54:04.

    Thank you for your support!

    -Helgi

  10. I have captained an Ironman Run Aid station for the Ironman here in St. George, UT for the past 3 years. I did this thinking it was “my way” of being in the Ironman. And here you are about to do it!!! The Ironman distance is an incredible, amazing accomplishment itself…and to do it with AS. I am seriously wanting to bow down and praise your wonderful-ness :) You inspire me!!! Thank you!!!

  11. Thank you very much! It means a lot to be recognized by people with Ankylosing Spondylitis. I really want to reach out to everytone with A.S.. EMAIL ME please with any questions, comments or ideas. All feedback is positive.

    Thank you all and please follow my blog. I am about top post my race schedule for the next year leading up to the big race…IRONMAN!!!

    -H

  12. Thanks, Helgi Olafson for sharing such a inspiring self tale – u have a true attitude, keep it up n keep going – i was diagnosed “as” at 21, currently i am 38, keeping fit with the help of workout and a better diet – recently started preparing towards an ironman race and was untill today thinking i am doing a vv difficult job with a v critical disease called “as” – but, after reading your story i feel i have taken up the easiest task and can ach it easily too – only thing i need to remember and stop worrying is “i am not alone suffering with such diseases n keep going like a normal man with little precautions” – thanks a ton, dear!!

  13. Dear Helgi, my preparation is going fine – i hade recently participated in my first full marathon at pondicherry (india) – had a gr8 experience – am looking forward to run couple of more marathons, atleast one ultra run and one half ironman before attempting a “full ironman race – also note, i have given up my running shoe & started running barefoot since last one month – really enjoying this bit – thanks & have gr8 day!!

  14. Anand,
    Thats great! Please check out the redesigned http://www.helgiolafson.org, if have not already. I wanted to recommend Skora Running to you. They are my running shoe sponsor. Great “barefoot” running shoe. Not literally in the sense of barefoot, but they are zero-drop and no running with socks. I completed the full marathon in 4:08 at Ironman Canada in them with no blisters at all.

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