Last night I participated in my first pod cast interview on Straight Talk with Dan and Marc; the question of my health and how I am traveling, being around a lot of strangers, and if the disease I have is terminal or not came up. I realized that he had gone all the way back to my very first blog posts.
Since the posts of I Woke Up 100 Pounds lighter and Dying While Living – Living While Dying it really hasn’t been addressed since. Thus I think its time to share where I’m at and how I did with what was supposed to be six weeks on the road riding and writing.
On June 15th I took off for what most people would think a bit deranged of a trip; mainly
because my plan of action was to ride my 300cc Kymco scooter from Buffalo NY to Buffalo WY – and because I grew up with a dad who always said, “Why go home the way you went…there are other things to see if we go another way” thus the plan was to ride through 12 states! The second part of unhinged idea was to camp, yes in a tent most nights, in order to stay within my excruciatingly tight budget. So on June 15 I was packed; tent, sleeping bag, food, extra gas, camera/computer gear, off and running…in the rain.
It was suggested that I stay-put one more night…only I knew that the storm was going to continue for at least a couple of days. Maybe…just maybe I could get to the edge of it by riding into it, and stay on schedule. I headed out and by the time I got to Uncle Johns Elk Creek Campground it was dark…but it had stopped raining. It stayed clear until I was back on the road the next day.
After two full days of riding in the rain, a warm bed was needed so I found a place just outside of my original first destination of Sandusky, OH. At a reasonable hour I was back on the road to Wayne State in MI where I had a wonderful meeting with Dr. Thomas Chu and we talked about hair loss and autoimmune disease.
On the ride from Detroit to Battle Creek MI, where I was staying for the night with a long time friend Gretchen, whom I met through the 4-H IFYE program, I was able to go past the largest mosque in America, it was breathtaking. Then into the country side I rode – it was as picturesque as one can imagine with huge horse farms and curvy country roads with beautifully appointed houses and lush green yards. It got dark quickly and I chose to get on a major highway making better time. Gretchen and I had a lot to catch up on and I arrived at house way later than planned.
This was night three on the road – I was fine. Here’s the health update. I have what is considered a chronic disease. Pemphigus Vulgaris does not have a cure…but it does have a management program. I am one of the ‘test pilots’ for a new therapy within this disease. I am not fully in ‘management’ at this point so I am still on some Prednisone to control the blistering and to help my skin heal when I do stupid things like get burns or even bug bites. I do Rituximab infusions every six months to kill off my B cells which create the antibodies that try to kill me by sending blisters to my skin starting in my mouth and eventually all over my body like it had in 2016. This will be an ongoing process unless some kind of miracle happens and my body stops over producing B cells that misunderstand that my skin is not the enemy.
Because Rituximab is not a full immune suppressant, like Prednisone or Cellcept, I am not as in danger of picking up an infection from some person who just doesn’t stay home when they should. I have actually been able to get through two cold and flu seasons without catching anything from anyone! I wash my hands A LOT and when I see someone obviously sick…I stay away.
Will I die from this earlier in life than I should? – probably. I’m on a Facebook page with people all over the world and people still die because of this disease every week and maybe every day. This disease is much more prevalent in other countries that aren’t as connected to the internet as we are. I know of two people right here in the Buffalo area who have died before the age of 60 because of this disease within this past year. If its not managed well…it gets out of control fast.
I made sure that my POA was fully aware that if I was in a major accident that no extreme life extending methods should be applied. The stress of the accident, surgery, or even needing many bones to heal would likely push me past my immune systems capacity and I would die with very little skin intact. I literally told them…”Please just let me die on the side of the road…at least I would be happy knowing I was doing something I love to do…ride.”
Living life to its fullest for as long as I can is important to me. Loving people who come into my life deeply is a fundamental part of my life now. Some people might think that this Journey I went on, and the tour I want to go on, is beyond unsafe…maybe it is or maybe its the healthiest thing I could ever do for myself.
Enjoy your ride!