On the Road AGAIN!!

By Amy, Scleroderma, United States, August 15, 2019

Here I am again on the road. I spend more than half of my life in cars driving to and from Hospitals, Clinics, Doctor’s Offices and Treatment Centers. I guess you could say it’s just par for the course when your living with a Chronic Rare Disease. 

Things have definitely fallen into a routine over the last 18 years. When I was first diagnosed my life was in chaos! I could not for my life find a local doctor who was familiar with my disease and treated patients with it! So my only option was to look outside my state into treatment centers that I could drive to on a regular basis. 

After about three months of hardcore researching I finally found a Treatment Center in Pittsburgh, and as the saying goes “ that’s all she wrote!” I have been consistently traveling from Buffalo my home town to Pittsburgh four maybe more times a year for over 15 years now! I like to think of it as my “ sight seeing adventures!” 

Over the years I’ve not only been to Pittsburgh for Treatment but I have traveled to; Boston, North Carolina, Rochester, and Cleveland. It has been quite an adventure not only leisurely but medically as well as emotionally. I’ve meet so many Nurses, Techs, Aides, Surgeons, Specialists, Clinitions and just everyday people like myself seeking quality treatment for what ails them. 

Today I find myself in the car once again on my way to Cleveland for a procedure. I have been fasting since 11am and we have been driving for over two hours! I’m hungery, stiff and bored! But that’s the norm for anyone traveling by car. 

This is the very first procedure I will have in Cleveland and it involves my heart so I’m not taking it lightly. Honestly I don’t take any procedure, treatment, appointment, consult, checkup etc lightly. It’s definitely all business when it comes to my health. 

So how do I find time for new experiences and fun when I’m constantly traveling for my illness? 

I MAKE TIME FOR IT! I’m a firm believer in living in the present and making everyday and each moment count in life. So I make it a priority to always enjoy my time in whatever arena it’s being used in. On my trips to Pittsburgh, I also go to their movie therater it’s small and quaint and so worth the ticket prices. I make time to try new places to eat each time I’m there and to see and try new things whenever I can. When I visited Boston for medical purposes it was for around three years. I ate everywhere I could, I shopped and bought cheesy souvenirs, I went to the zoo, say a baseball game and took in all the sights! North Carolina was a very similar tail. Do you see the pattern? 

Just because the trip your taking isn’t for the best of circumstances doesn’t mean you can’t enjoy yourself while getting done what needs doing! 

For me today while visiting Cleveland I will get my procedure done and ten enjoy a nice meal somewhere I’ve never eaten with my parents before opting in the car to drive back to buffalo. For me it’s all about the little things in life that I can do to allow normalcy into my experiences as much as possible. Doing these things keeps me sane and helps me enjoy my life even though I’m chronically ill. 

They party doesn’t stop here at least not for me! 

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