Recently I reached out to the guys from Incubus and was stoked when I heard back from their manager. With the band being super busy with touring they hooked me up with the Make Yourself Foundation. MYF is the bands charitable foundation where they do all sorts of cool things for people. We had a chat on the phone and they were all about featuring my story on the MYF blog. Go check it out, Wheels & Red getting down with Incubus!
I’m fighting a wicked battle of blogger’s block, so forgive me for slacking off recently. Can I claim procrastination as an MS symptom?! Life has been full to the brim; full of awesome things…and a few not so awesome things. The awesomest of all, Meg left her job at mywedding.com! It’s been a long time coming, but she can now focus on her photography full time. Since then this house has been so full of laughter and creativity. Just the way we like it.
On the other end of the awesome scale, there was a septic backup *and* my first root canal on the same day. Yeah, real fun. Those weren’t so bad as when the gravity of my first Tysabri infusion finally sank in. The infusion itself wasn’t that bad, but the allergic reaction I had made for a pretty stressful experience. Mixing my allergic reaction with the risk of getting an incurable brain infection made me reconsider whether this is something I truly want to do. And for now at least, it’s not. I have decided not to continue treatment. After digging into the research, I’m not satisfied with the numbers; so I’m not accepting the risk for big pharma. This means that for the first time since my diagnosis I will be off all disease modifying therapies for MS. Not to worry though, because I live a healthier life than ever before. Plus, I have all I need: the support of my best friend.
When I step back and look at the big picture, I love where I’m at. So many things that once started out shitty ended up leading to pretty awesome things. So for now we are letting go of the norm and learning to fly. Life is good.
With summer coming to an end what better way to celebrate than with the county fair. As of late my hands are not cooperating so we are going to have a photo adventure today. Check out our day at the Kitsap County Fair.
I am working on a new way to keep you all updated on the adventures of Wheels & Red. Don’t forget to subscribe so you don’t miss the first video blog on This will probably get interesting…
“Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response.” – National MS Society
William (Bill) Kalbach Jones was my great grandfather and he had Multiple Sclerosis. He was a civilian working in the Puget Sound Navel Shipyard as an Aeronautics Allowance Specialist. After my grandmother passed away we found a folder of letters he had written. The letters were years of personal correspondence from Bill to his colleague Elwood. Elwood was a Captain in the United States Navy stationed on the East coast. The letters start in 1953 and continue through 1959. They wrote as often as they could although there are plenty of gaps.
Bill spent most of his time talking shop. He loved his job and he was really good at it. There was plenty of drama in the 1950’s. Scattered through the letters are paragraphs about his waining health and his chatty teenage daughter(my grandmother). It’s hard to believe I can read through his account of MS. His case was very progressive. He used a wheelchair and typed every letter with the index finger on his left hand. That is some serious hunting and pecking.
He tried every treatment that offered any hope of slowing the progression. Starting with the standard treatments then moved to experimental ones and finally ending with religion. He didn’t talk about MS all that often, he never wanted to complain. He was a tough S.O.B. that did what he could to live a happy life with his family.
It’s hard to describe what these letters mean to me. One day I hope to put together a book of these letters to share with others.
But I am not going to rest in any such possibilities now in respect to my own effort to lick this health problem of mine. To slack off now would mean a measure of defeat in fighting my way. I guide my everyday action not by what I think I can do but what must be done. Just going up the stairs to bed every night is a tough bit of work, yet I do it. Sure it’s difficult , but if you do it because it must be done and forget how hard it is, it usually gets done. It is like working each day. I could develop a genuine aversion to it and get a medical retirement easily — but who would pay the grocery bill? I work every day not because i can force myself to overcome the obstacles of ill health — what’s that anyway? — but because I must work so I can eat.