Doctors Appointments dictate my calendar!
Most people my age, 45, look at their week and see a variety of work meetings, conference calls, places to shuttle kids or aging parents, appointments with trainers, etc… I too have my fair share of “everyday meetings’. I volunteer, as much as I am able, at my son’s school and church, plus help out our aging parents when medical support is needed. When I look into my old-school, spiral bound planner or on our family dry erase monthly calendar on the fridge, I am forever observing a repeat pattern of doctors and tests each week. Often I will try to schedule my medical appointments back to back cramming in as many as I can into one long, exhausting day! Let’s look at just this week: Tuesday: Dermatologist, Friday: MRI, Sunday thru the following Tuesday: In patient treatment at the hospital. That does leave Wednesday & Thursday wide open!! Sounds doable, until I look at week after week of the same! Sigh!
In today’s society it doesn’t seem to matter if you have a chronic illness or not, it seems we are all programmed to book each minute of our day with something, right? It’s as if we are running a weekly marathon only the finish line becomes the starting point for our next week’s race. Since I stopped working at my career and started working on beating scleroderma, I have come to realize that medical appointments, therapies and tests are going to flood my weekly planner. But they are essential for me to get the care I need. Once I mentally wrapped my head around that fact and gave myself time to absorb, I have grown to accept that is ok.
The medical team that I have built since my diagnosis is my life line. They are the ones who make sure this crazy disease is in check. Not one person with scleroderma presents symptoms or complications the same. That makes scleroderma patients tricky! Managing a large medical team can be extremely challenging. I have found that a comprehensive, all inclusive program where doctors, specialists & therapists are able to communicate amongst themselves and share test data or medical records is extremely important to my well being. There is no way my mind could retain all the medical info necessary to share with everyone on my team. My all start medical team consists of my: general practitioner, rheumatologist, dermatologist, cardiologist, pulmonologist, gastroenterologist, OB, general surgeon, hand specialist, physical therapist, nutritionist, pharmacist and many nurse practitioners or PA’s who assist as back up hitters when a teammate is out for the day! I am blessed with my University of Michigan medical team and suggest that anyone with scleroderma check it out! If that isn’t possible, find a location where all doctors are under one umbrella…. cuz if not you will be left out in the rain!!!
Acceptance of what my calendar looks like has taken some time. No one in their right mind wants to have tons of medical appointments. But you do what you have to do! I make the most of it and build good relationships with my teammates. It seems to help. I also know I am getting the best care and that is a life saver for me! It’s my new “normal” and I’ll explain that in another blog. Make it a great day my friends!