Jesse Jayne Wardrip
I was diagnosed with AS at the end of August 2011. This was quite the blow because I was to be married to the love of my life the following month. AS is a lifelong disease that has a high probability of causing major hoops and hurdles in life. I was so upset. I was prepared to give my wife to be a ticket out and she smashed my fears before I could even mention them. She was devoted from the beginning. Nothing was going to stop us from being together. After all, it is for better or for worse.
Shortly after we returned from our honeymoon I was given a rollator, walker, so that I could get around. It really made a difference and things were looking up again. Within a few months my inflammation levels were through the roof. I had to get a shower chair, and three cortisone injections, two in my back and one in my knee. That’s when we started a crusade to find the right medication. Doses went up, they went down, they added this, and they took away that. Nothing worked. I started to fear that I wasn’t going to find anything and I would be in crippling pain and unable to do anything for the rest of my life, and I was 23. Finally I was placed on my first biologic, Enbrel. After about 5-6 weeks I was feeling better. I had more energy and I could move around a little more. That’s when the next hurdle, that was actually a mountain, was presented to us. Even with my insurance the Enbrel was going to cost us $900 a month, and that is a copay. My wonderful wife did everything she could to find a prescription assistance program. After being turned down for three, which had extensive waiting times and lots of paperwork for my Rheumatologist, we finally hit gold! I was accepted into the Encourage Foundation. They pay the co-pays for people that can’t afford Enbrel, but need it to live a more normal life. This was a HUGE accomplishment for us, and I am so thankful for my wife and all her help with making this happen. Although my inflammation levels were still high I was feeling better, and we had access to the medication I needed. It was time for another hurtle. The walker I was using was tearing up my shoulder and my doctor and I thought it wasn’t helping me reach my full potential. I was sent for a gait evaluation. After trying this and that the physical therapist and her boss put their heads together and came up with a perfect solution. Forearm platform attachments to a standard walker. As soon as they were able to dig up two separate models from other departments they let me try the makeshift version to see how it felt. I took a step, and I was off. I couldn’t believe it. I must have made 15 laps up and down the gait walkway. I couldn’t take the enormous grin off my face. I could walk…… comfortably.
I left with a sense of excitement I hadn’t felt in a while. I, Jesse Jayne, was going to get an assisted device that would make shopping, and longer walks possible. Armed with the information and a prescription I began to look all over the web to find the perfect forearm walker. I soon found that well…… in America, they don’t exist. The UK and Australia have several models and they aren’t that uncommon. I was quickly finding out that I was going to have one custom made, or worse, be stuck with a standard walker with attachments. Thinking that was the only way we purchased a basic walker and two forearm attachments. I told my beautiful wife that I wanted to go out and window shop. After she almost died from shock we went out with our hopes high but nowhere near expecting what happened next. We window shopped until the store close. Then the next day we did it again. The third day we went to a mall in Indianapolis and again walked around until they closed. I can’t begin to express the feeling of euphoria and how stoked that my wife finally had her window shopper partner back. With three days of tearing up the town I went back to search on the internet. Finally I found the only forearm walker, to my knowledge, that is made in America. It is called the Dolomite Alpha Advanced Walker. The only problem is it was between $600-$900 depending on where you special order it from. We called countless home health pharmacies and my insurance, and we scoured the web for some sort of help purchasing this walker. We had no luck. The problem is the walker I was using is self-built and there for does not work like it should. It is only made to go on flat surfaces and is very heavy and it doesn’t fold or travel well. I couldn’t use it to go on walks in the park or on the beach, which is a real bummer since the water is a wonderful place to be for someone that has problems walking on land. The Dolomite walker has wheels that are all terrain, which would allowing me to go out for picnics in the park, and beaches that aren’t handicap accessible. The walker also has a seat, like my first walker, and that comes in handy more times than you think. It also has a basket and a flat surface allowing me to carry things. With the walker I was using at the time my wife needed to carry everything for me, including my food at buffets or anything I find in a store. Also the walker I was using didn’t have wheels on the back so every rug I went over I pulled up. I can’t begin to count the times I had almost done a nose dive. The Dolomite has wheels on the back so rugs are no big deal. The other amazing thing about the Dolomite walker is the breaking system. I was without brakes, which is a problem going downhill as you can imagine. Needless to say this walker would change my life. My wife came up with the idea of online fundraising and with the help of my friends I was able to raise the full amount of money for the walker. I couldn’t believe the generosity that people extended. My brother offered to write songs and his roommate, who I have never talked to, offered to paint pictures to whoever donated. I even had a friend of my bother that I again had no idea who he was donate $600 alone. I couldn’t believe the overwhelming feeling of people wanting to help someone they only knew by proxy in such big ways. The walker was ordered the next business day and It finally arrived. There aren’t words for how amazing it is. No more tripping, no more being caught on rugs or door frames and that bumpy sidewalk, well my concerns for that are in the past.
What I have learned through this journey so far is that being disabled doesn’t mean you can’t do things. It just means you might need to do them differently. Things are still hard, but I know there are people out there I don’t even know cheering me on. And that is something I definitely feel with the Faces project. I wear my bracelet with pride. The amount of strength that I derive from this little blue band is more than any medication or assistive device. When I am in pain I look at my bracelet and think about all the other warriors out there wearing it too. All of us in unison shouting “We are not alone. AS is not me. Stand Tall”!!! So here is to all those faces and their bracelets, I stand tall with you!
Jesse Jayne, face 275
Evansville, Indiana United States of America