Uh-Oh!

Ok, ok, I know this will be hard to believe given my usual attention to detail and rigid organizational habits, but I made a mistake. A big mistake. The kind that causes some serious issues, and tears, lots of tears.

As it turns out, about 2 months ago when I got the appointment at Mayo Clinic, I booked hotels for our stay. We were told to plan to stay 3-7 business days for appointments (they are not open on weekends), and keep our travel plans as flexible as possible. So, we decided to stay in one of the hotels that connects to Mayo Clinic via the underground subway tunnels for the first 3 days. Then, we we're going to head to Minneapolis for my weekend off, and then back to the first hotel near Mayo for 3 more days. We figured we could cancel any days we didn't need, and were really hoping we did not need to add any more.

Hotels near Mayo run at full capacity nearly constantly, and are booked days, if not weeks in advance. After seeing the doctor yesterday, and getting the game plan together, it turns out our plans were very accurate. My final appointment for this trip is on Wednesday morning next week, so we can see the doctor, check out and drive home. No extra reservations needed. We do apparently need to come back once more, in about a month or so, which we did not know until yesterday, but I digress. So, what mistake did I make? Oh, wait until you hear this! (Some day in the future, we will get plenty of laughs out of telling this story, but right now it is #toosoon)

We arrived in Rochester, Minnesota on Tuesday evening. I strolled into the "Hilton Garden Inn Rochester Downtown" hotel, and gave them my name. The clerk searches and searches and asks if I am sure about the date and suggests that we might be at a different Hilton hotel nearby. I tell him, no I am sure my reservation is at the "Hilton Garden Inn Rochester Downtown" and have a confirmation email. Assured they must be making some mistake, I did not hesitate to whip out my phone and show him the confirmation number when he asked. I immediately noticed the expression on his face change, as he looks at me and says he found the problem.
Turns out we are at "Hilton Garden Inn Rochester Downtown" in Minnesota.
My room is booked at "Hilton Garden Inn Rochester Downtown" in New York.
Um.....

Now, THAT is a problem!! We are over 5 hours from home, there are no hotel rooms available near Mayo (none, and it is even harder when you need an accessible room!). To make matter worse (is that even possible?) I got a sweet deal, and saved us a bunch of money on our 3 day reservation by paying 30-days in advance with their non-refundable, non-transferable, non-cancellation policy option.
Um.....

So yeah, that is how our trip started. We spent at least an hour on phones, and laptops, scrambling to find somewhere to sleep (besides our car or a park bench). Thankfully, we did find a room! It does not have an accessible shower. It is not attached to Mayo's subway system, and therefore not as convenient, but we are not sleeping in the car at least. Praise God it is only 15 minutes away and didn't have to be further!

Hilton has also been trying to figure out a way to refund our money (although that hasn't happened yet), and they were able to transfer my New York reservations for next week, to a similar (but of course, more expensive room) here in Minnesota, which is MUCH closer to Mayo than New York! It is closer than our current hotel, and will have an accessible shower, so only these first 3 nights will be an issue.

Things aren't working out exactly as planned, that's for sure! I am grateful I was already working to manage my expectations!! Things worked out ok, but definitely not how I expected. I am praying that my stupidity might not cost us the 3-day stay cost in addition to the hotel we ended up at, so I hope they truly do refund the money.

We had my eval yesterday in neurology. The doctor ordered a bunch of tests. This morning, a boatload of blood was drawn for labs. This afternoon is the first of 4 MRIs. Then I have an EMG, a spinal tap, and consults with each: peripheral nerve specialist, rheumatologist, and neuro-ophthalmologist. Each specialist adds their testing to my schedule as needed.

Unfortunately, I cannot get in to one of the specialists until August 22nd. Tests are spread out over the next several days, with lots of free hours for us to sit around and get bored. When I do have an opening in my schedule, we can show up in the early morning hours at the specialist's office, try to get my name on a cancellation list, and then sit there all day, waiting to see if they will be able to work me into the schedule. We are REALLY hoping that we can make that work, instead of coming back in a few weeks. Most people who make it on the list are here by 6:30 am to get in line!! They take 4 or 5 names a day, and try to get them in, but there is no guarantee. You have to stay in their waiting room also. If they call your name, and you are not right there, you miss your chance. We will be able to be there tomorrow (Friday) and also Monday, since any appointments on those two days are scheduled in the evening.

Continued prayers for strength, lower pain levels, patience, and God's favor that we might get in to the peripheral nerve specialist before we come home. If that does not happen, I may make the trip back up here alone (or with any friends who may want to push my wheelchair around in exchange for free meals and share my hotel room.....I promise the room will not be in New York!)

Thank you all for praying, and sending encouraging texts, emails and messages! I am worn out already, and I have several more days to go.

Until Next Time~
Shari