Looking Back – Day 17

Today is Day 17 of the Art Apple A Day Retrospective – for information on the project click here.

Day Seventeen – October 17, 2010

Looking back 10 years ago today…

It was one of those stunning fall days in Maine and as you will read from my original post, my parents and I headed out to their home on Vinalhaven Island. I was so happy to be home. I moved to Colorado after college – it was a grand adventure and one I’m so glad I took because it eventually led me to my soulmate and lots of adventures before Doug and I moved to Maine in 2013. Moving home was extremely good for my soul, this is where my roots and family are and I needed to be here for my continued healing. It wasn’t an easy transition. A move across the country is difficult in normal circumstances but the most difficult part of the transition was changing Rheumatologists. My Rheumy in Colorado had become a friend and he was amazing. He never stopped working on figuring out what was going on with me and I credit him for putting the pieces together. A.S. is not a slam dunk diagnosis, in fact it takes most people an average of 10 years to receive a diagnosis and that was pretty spot on target for me. The thought of having to leave Eric had me worried.

I must have been prescient.

To make a very long story short, the Rheumatologist I first saw in Maine refused to keep me on the same medications. At that point I had been receiving my biologic infusion for 7 years! I convinced him to call my Colorado Rheumatologist to discuss my case and the medication – and he did – but he dug his heels in and said, “Well, I don’t know him.” You can’t make this stuff up. The delay was months because of the move and I almost traveled back to Colorado to get my infusion because at that point I was desperate to feel better. In Maine there are very few Rheumatologists and the practice this “gentleman” was in refused to let me see another of their physicians. So I started looking for doctors and found someone about an hour away in New Hampshire who had great patient reviews.

Unfortunately, it was two months before I could get an appointment. My Dad was driving from Massachusetts to Maine that week and made a quick detour to stop in their office and plead my case. Bless his heart and bless theirs – they got me in within 10 days and my new Rheumatologist was baffled by what I relayed to him. I had an appointment to get my infusion within the following week once they worked their magic to get the insurance approval.

These are the types of things that many people don’t necessarily consider about people living with health challenges. There are always struggles with the medical system. Finding a good Rheumatologist is imperative. I don’t agree with being aggressive with physicians, it rarely works. Attempt to get them to see you as a human being who needs help. Bring in an advocate (I did with Dr. McAsshole) and that didn’t help. When these approaches fail, best to move on because bad doctors put bad things in your chart and that is NOT what we want. Unfortunately bad doctors exist. When you find a great Rheumatologist like my doc in Colorado or my doc now in New Hampshire – keep a hold of them! Seven years later I still travel to New Hampshire to see Dr. K. because he’s a gem.

The above doesn’t have much to do with my post from 10 years ago but it’s an important story in a journey.

To see my original seventeenth post ~ Polka Dots ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

One Reply to “Looking Back – Day 17”

  1. I thought your dad was returning from Vermont, either way he took a detour to go see Dr. K’s office. Wonderful move by your dad. I remember how emotional you were when you got the news. Going months without your treatment was horrible!

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