Wednesday Walker Spotlight – Jenna by Chris Scott
Once again you folks have amazed us. The numbers that are coming in are OUTSTANDING!! We set a very lofty goal this year for Walk Your AS Off. and we are looking better each week.. Congratulations to each and every one of you!! Keep it up!
This week I am spotlighting the gal who started all of this, Jennifer Dye Visscher. She is the burning force behind Walk Your AS Off. Last year she single-handedly brought together people from around the globe to join together and walk around the world in the name of AS Awareness. And we DID IT!! This year she reached out for help to make it even bigger. She hit us with the question.. What is our goal for this year if we’ve already walked around the world? So the logical or maybe not so logical answer was Let’s Shoot For The Moon.
Jenna is an advocate for us, and a friend without measure. She is an AS Warrior that has faced the dragon head on. She is an artist, and wife. Jenna and her husband Doug currently live in Colorado, but are looking forward to moving to the Northeast. I thought it was important that we get to know her better and hear her story in her own words…
“I can trace back AS related issues to the age of 16 but I was told like so many that it was growing pains and issues related to the stress of running track. I suffered terribly with shin splints & Achilles tendonitis as well as flares of psoriasis. After quitting track, my late teens & early twenties were fairly uneventful in terms of pain until I took a big fall in a skiing accident. At that point, I went from doctor to doctor looking for answers to the pain. This went on for years and the doctors always wanted to explain it away as happening because of that fall.
Shortly after getting married and moving to the San Francisco area, I was in & out of my doctor’s office every few months due to pain & fatigue. I kept hearing the same thing, “you have a viral infection” and “there is nothing wrong with your back”. This cycle went on for another five years with one physician even asking me how my marriage was! That was a breaking point for me. I had no idea how to keep fighting to find answers if I was going to be told it was all in my head or I was depressed or blah blah blah. At this point we moved back to Colorado and I was sent to my FIRST Rheumatologist appointment where I was given a diagnosis of Fibromyalgia. That was a help but I truly felt there was more going on and my symptoms kept escalating.
Finally, my body was in such revolt and dealing with so much inflammation that I was having trouble walking I then had a bout of iritis that had me unable to open my eyes. I had been dealing with major light sensitivity & eye pain for a couple of years but thought it was migraines. I was told it was iritis and A.S. was mentioned by the eye doctor. Also at this time I was dealing with severe psoriasis that literally had shredded my hands and elbows and skin in and around my ears & feet. I was told it was dry skin! I decided to go straight to a dermatologist who told me it was in fact psoriasis and asked about joint trouble. These two “new” symptoms were keys in my diagnosis especially since I am negative for HLA-B27. I had tested negative about 8 months before receiving a spondyloarthritis diagnosis. My pain levels had reached such a high at this point that I was on a lot of pain medication and my life had changed drastically.
I had stopped working and I was spending most of my time in bed. If I had to do something socially, I had a great deal of anxiety about how I would manage and my personality had gone from being the life of the party to the gal in the corner speaking with no one but her husband. We went on vacations where I set a timer for every 4 hours to take pain meds and passed on doing things that everyone else was doing because I was so fatigued. In beautiful places of the world – I was in bed. So, once I received a diagnosis and could start biologics I jumped at them. I wasn’t living so I was ready to try anything that might give me my old self and life back. It was a slow process. I took two of the self injectables over a period of a year and a half but it seemed like although they were helping, I wasn’t getting enough medication for it to last between doses. So, the decision was made to put me on Remicade. That was over 6 years ago now and it took about a year on it to feel the full benefits. I feel the medication gave me my life back. I am me again! Here is something my Mom wrote on my personal blog about these years – through her eyes.
I worry all the time about going back to the place where I was. I was in the depths of “the crisis years” for about 8 years! I feel I lost my 30’s and I ache for others who experience the same. Since I have this fear, I fight for my health beyond the issues of A.S. because I worry about how health care might change. I am now eating a diet that is geared to keeping inflammation at bay and I know that I have to make my body stronger and the walk helps me do that. I hope it helps others see that we have to be proactive in keeping ourselves as well as possible so that we can experience more from life.
We’ve struggled with changing company plans and are now dealing with very high max out of pocket dollars and we’ve done whatever we had to do to keep our insurance during these difficult economic years. Keeping my medication is a driving force in our lives which in a way limits us. I try to limit the “what if’s?” What if I didn’t have to take it? What if I were well? What if I hadn’t had to stop working all of those years? Those what if’s can be killers! Instead I am working on finding the blessings in today and not allowing this disease to take over my life.
I decided to create Walk Your A.S. Off because I realized that I had become very sedentary over the years. My mind was still in some senses in those crisis years. I had let A.S. keep me from being a healthy person. We can be healthy and have a systemic disease! I wanted to share with people that we have to fight against this notion that we can’t do things. I knew I needed to move my body – all the literature on autoimmune arthritis and specifically spondylitis, states this. I wondered what was stopping me?
Again, it came back to the fear of being in that place where the disease rages out of control but the thing is, this is actually not counter intuitive. We worry about moving too much, or doing too much physically because those things can set off the disease activity so we start to equate doing anything physical to pain. We walk in the other direction instead of taking the beast by the horns and saying, “not today AS, not today”!
By putting on a pedometer and seeing how much we move or do not move, we become aware. We can gauge our level of ability NOT disability. If it is a few steps more each day then we should be so very very proud of ourselves. I wasn’t able to do too much last year. Most of my days were below 2000 steps a day and many were below 1000. This year I’ve had many above 10,000 and my highest day was 22,156!!! I’ve also had some “crash days” where I just had to rest. And, this past week I over did doing some strenuous work around the house so I’m resting and working on building my strength back up. The most important thing about the walk is to participate. Take a few steps and join all these amazing people working on a collective goal to reach for the moon!
The ripple effects of doing the walk are tremendous. The stories I hear about people sharing what we are doing touch me beyond measure. The walk helps us personally, and it helps us by giving us a way to share our lives and challenges with others – that is why I created the walk but I had no idea how it would grow and touch so many lives.
The Spondylitis Association of America is a fantastic organization doing work specific to A.S. and the family of diseases. I am grateful we have a non-profit that works specifically for us. I honestly work so hard for awareness of spondylitis because I know what it is like to live with this disease and how demoralizing it can be that people do not understand. I fight to get A.S. to be a better known disease because you, my friends I’ve come to know are truly amazing and strong people and I want people to understand just how strong and courageous and brave you all are.
We are making great strides all the time and more and more people are being educated through our walk! I do not understand why people wouldn’t join and be a part of it. It comes down to us… we can talk until we are blue in the face about wanting people to understand but we can’t have that feeling if we aren’t willing to put some skin in the game!!! Don’t just talk the talk about needing to raise awareness… walk the WALK! It isn’t too late, please consider joining in for this last few weeks.
It’s difficult to have a team and be in charge of the entire walk. Last year I set up my own team to make sure people had a team to join! I love The Blue Apples and I adore the folks on my team but they do end up getting less of my attention. Thankfully Chris Scott and Gillian Eames have taken on a co-captain roll with me to help our team be successful. Our steps keep going up each week, I think that is the most important challenge and goal. To keep doing just a bit more each week. I believe there could be a cure for AS. I also know more people need to know about spondylitis in order for that to happen. We need to keep making our community stronger and stronger and not dilute our efforts or message by joining in with efforts that aren’t specific to the family of diseases specific to spondylitis. The Arthritis Foundation is a huge organization – have you ever looked at how much information they devote to spondyloarthritis? I’ve supported them in the past and I would in the future if they actually did something specific for our community.
The first thing I say to somebody with AS is that I’m sorry they have the disease. The second thing is that it will get better so hang on. Once a person has received a diagnosis, that is half the battle right there! Going through the stages of loss are huge. It is a loss and a grieving process must happen but it is key to find a way to get out of the “this sucks” mode! There is so much about us that has nothing to do with A.S. and life is going to be difficult but it isn’t over. Find ways to adjust and look for people who lift you up and encourage you to be positive.
My personal goal for the walk has been to attempt the Million Step Challenge. I was on track until last week. It is a very difficult goal. Lots and lots of walking and time to make it happen and if your back flares – well that changes everything. We’ll see if I can get back on track and then the big thing will be if I can make up the steps I’m down which is about 50,000 steps as of today. Wish me luck!”
Jenna, Thank You for everything that you do for all of us. And I am going to push you to your Million Step goal. So get on that treadmill, take Doug and the dogs and hit the trails, because you are going to do it and WE are going to the MOON.. You are an inspiration to us all..
I can’t say it enough, ASer’s are the strongest people you can ever meet.
If you would like to be a Wednesday walker Spotlight or have a team member with an interesting story to tell, Contact Chris Scott at facebook.com/WalkYourASOff or facebook.com/MoCoChris
Chris Scott was diagnosed with Psoriatic Spondylitis in 1999 and he’s been waging a war on AS since. When Chris received the diagnosis, he went to work to find out everything he could about this AS & he works along side his Rheumatologist, hounding him about new drugs and therapies. AS finally forced Chris to leave his job as a Firefighter/Paramedic in 2009. Since that time, he’s come across many, many wonderful people and has had the pleasure of meeting several ASer’s at various AS Events around the Mid West and Canada. Chris writes our Wednesday Walker spotlight.
Wednesday Walker Spotlight – Jenna by Chris Scott