May 5, 2019

April 2019 - waiting in the desert, Catalina, Mayo, Picacho, Mesa, Lost Dutchman

Catalina State Park is a great place to camp.  It's close to shopping and other amenities, but very quiet, there are a lot of trails and a pretty desert landscape...

Catalina State Park

Arizona has some great sunset skies

Not a bad way to spend an afternoon!

We left Catalina State Park one morning, early, to drive up (without the trailer) to the Mayo Clinic because the neurology department had an unexpected opening and I had my first appointment with Dr. Carter, a neurologist who specializes in diseases that may contribute to Transverse Myelitis.  He reviewed all the information I provided, including the MRI's that had been done on my brain and spine, the spinal tap I had done in Palm Springs, the blood tests, everything and he quietly said that it seemed I had MS...but he'd need to order a few more tests to be sure.

In a weird way, it was good news.  Not that I had MS, I'm sure, but to have a doctor treat me like I wasn't crazy and that he might have an idea what it might be.

So, feeling like we were making some progress, we moved closer to Phoenix, to one of our favorite spots, Picacho Peak State Park.  The second night of our stay we finally got to spend an evening with one of our Instagram friends, Michael and Lynne Knowlton.  The two of them were so sweet in person...we spent a nice evening having dinner and drinks around our campfire.  (Check out her design blog, she has impeccable tastes!  And one of these days we will make it to their amazing treehouse!  It's on my bucket list!)

The Knowlton's sweet trailer as they were saying goodbye.

After a few nights at Picacho Peak we moved back to Mesa Spirit for a couple of weeks.  The best thing about Mesa Spirit is the proximity to 'city stuff', grocery stores, etc...and, as it turned out, movie theaters!  It was starting to get hot in Phoenix and our air conditioner was necessary most days, all we spent some time midday hanging out in nearly empty matinees.  That, and bookstores...Barnes and Nobles became a regular in the "what are we doing today" plan! (Yes, Mesa Spirit has two pools, which seem a great choice for a midday plunge...but they're not as warm as Sam's and they are almost always very busy!)  So, we ate a late breakfast, drove over to the bookstore and/or movie theater, came back for an easy dinner and a sunset bike ride...and then took a late night swim.  Tough life!

Did I mention Arizona sunsets are often spectacular?!

I had some tests done at the Mayo (Evoked Potential tests) and then we waited some more...and while we waited we moved over to Lost Dutchman...another one of our very favorites, I think we like ALL the parks in Arizona!

The way those mountains light up at sunset is incredible.

Reminds me of something out of Ghostbusters!  

Mike framed this one nicely...and that sunset orange was unbelievable!

Fountain Hills

The kitchen sink view...with all of my talismans including "Gracie", a little figurine that always rested near my
mom's kitchen sink and a sweet little vase, given to me from Susan of @silversabbatical. 

Mike was feeling left out of all the medical crap I'd been doing
so one day we ended up in an urgent care facility because
he had kidney stones, again!  

On the 25th of April I saw Dr. Carter again and he went over the results of all my tests; the evoked potential and a spinal MRI.  The tests confirmed his suspicion, I had MS

He ordered one final test before we left Arizona, a lumbar puncture (spinal tap) along with a slew of labs.  Somewhere in this process we discovered that our insurance broker had misled us to believe that we were covered anywhere we went.  And while that was true for the emergency room visits, it was not true at all for my appointments and tests.  So we needed to get home, back to SE Idaho, to sort it out and to find a doctor who could work with me on a treatment plan.

So, we headed north while we waited for the last test results to come in.  Dr. Carter had already submitted the order for a drug called Ocrevus, but our insurance company denied it, saying instead they'd like to see me fail two other disease modifying therapies...  Don't get me started on that!  We were heading north.

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