Looking Back At U of M

I was just going through some more older posts and came across this one from my visit to U of M. I titled it "My First Visit To U of M", but it ended being my only visit.

That was a wonderful trip. My daughter, grandson and I had a really pleasant time even considering the stressful circumstances. I can still remember it like it was yesterday. It ended up being my only visit because they had no new information to give me other than a "new" diagnosis of Transverse Myelitis. This was not a "new" diagnosis, but a confirmation of a diagnosis given by a neurologist in 1998. He was rude and crude, but he was right. Unfortunately.

Going back through my older posts has been cathartic for me and has given me a new and fresh perspective. I've been on Facebook a lot lately. Mostly browsing groups about Iceland and the like, but even trying to stick to that, it's nearly impossible to stay away from the negative people, the politics and the trolls who just want to argue with anyone who they can goad into doing so. I made a decision today to try to limit my time online and just focus on working and saving and continuing to enjoy my life as I do in a positive and productive manner.

I do appreciate the Facebook groups and they are full of so much valuable information from people who have actually visited the places I wish to go, so I will still visit them to learn more, but I feel that it's imperative to my mental health to limit these visits and to limit my interactions, especially with those who are hell bent on ruining someone else's day.

I'm Back

I know that I went dark for a little while, and I guess it was just a much needed break. My visit to U of M ended in disappointment, and I think I just became very discouraged. I received a phone call from the neurologist who examined me, and in his words he is "convinced I had some sort of myelitis and this is the unfortunate aftermath". Well, that's kind of obvious and doesn't really help me figure out a solution now does it?

I know I suffered some sort of myelitis. That was not why I was sent all the way to U of M. I was sent there to try to get to the bottom of why things have changed so drastically, and why my legs are making my life a living hell. He did the blood tests, which all came back normal or negative, and he examined my reflexes and level of nerve function, etc, but I guess that's the end of the line. He's not going to go any further with trying to find the cause. He suggested Botox injections and referred me to Physiatry down there, but this is something I can accomplish here at home without all the traveling and stress, so I am not pursuing that avenue.

We are, however, pursuing it here at home. I have Botox injections for my inner thighs and hamstrings scheduled for July 22. This was the soonest we could get it done since it has to be submitted to insurance first, hopefully approved, and then ordered. I am very hopeful that this provides enough relief that I am able to finally get my legs stretched out and a little more mobile and flexible. The fentanyl patch has done wonders for my every day mobility and movement, but my legs still refuse to go completely straight and I am still unable to stand.

I have an appointment today with Occupational Therapy to be measured for a new wheelchair. Hopefully, Medicare will pay for a new one in full, but I am not convinced. Medicare doesn't even pay for my medical bills in full. I am now facing thousands of dollars of bills piling up that are my responsibility, which brings me to my GoFundMe page.

Originally, I created my GoFundMe page for the expenses of driving to, and staying in, Minneapolis for what was supposed to be a lengthy search into what is ailing me. Now that it seems that has hit a dead end, the leftover funds will not go to waste. They will be applied to the medical bills that are currently looming over my head, and also to possibly my share of a new wheelchair. The wheelchair I am in serves its purpose no doubt, but it has seen better days. It's also quite heavy, so a newer, lighter version of a chair would go a long way to lessening the damage being done to my upper body every time I have to lift it in and out of my car.

I turned donations off for a while after I found out U of M was pretty much a dead end, but I have since turned them back on now that I have all the other expenses here at home piling up. I will not be actively sharing or pursuing donations as much as I was, since there was still around $500 that went unused from previous donations, and will now be applied to my previously mentioned bills, but the page is there and donations back on for whomever comes across it and decides to be generous.

So, I have not given up, but the path has changed a bit. Things are staying here at home, which is nice. I would still love to get into Mayo and have them take a stab at my mysterious case, but for now I am happy with where things are and are headed.

Never Give Up

My First Appointment With U of M

My first appointment at U of M went well. It was short and sweet. The facility is amazing! The staff and doctors are amazing. The neurologist had a lot of insight and ideas into what he believes is going on with my body, and has been going on with my body since my first episode in 1997 that left me with residual weakness in my lower half.

Heading in to Minneapolis for my first appointment with U of M

I had to do quite a bit of searching to find a hotel with beds that were low enough for me to get in and out of unassisted. Although my daughter is a skilled CNA and could lift me in and out of bed no problem, I see no need to put her through that when I can simply find a hotel with low enough beds. Not to mention I get up several times a night to use the bathroom and I would never in a million years wake her that many times to do so.

The hotel I did find was awesome! The Aloft in downtown Minneapolis was only $93.00 for a double queen bed wheelchair accessible room, and it was ACTUALLY ACCESSIBLE! I end up having issues with so-called "accessible" rooms when I get in there and the bathroom door isn't wide enough, or it opens into the bathroom so I can go in and close the door at the same time. But, this hotel had a sliding barn door style door on the bathroom with a full length mirror and a HUGE shower with fold down seats and a removable shower head. The beds are platform beds that were the perfect height for me. All in all I was very happy with everything about this hotel; the price, the accessibility, the staff, the location. I give it an A+ for sure!

Aloft Hotel, Downtown Minneapolis - yay for low platform beds

We even had a nice view of the new stadium! The sun was shining bright as soon as we walked in, and I really needed that positive and bright atmosphere to brighten my spirits and really make me feel welcome and safe the night before my appointment.

We even had a view of the new stadium

My grandson loved the bed, and he even got a bath in the bathroom sink! It was so much fun hanging out with my daughter and grandson. We laughed and enjoyed the quiet, bonding time. We haven't had much of that since the little guy was born. My daughter has been busy with him, and work, and all her other grown-up responsibilities, and I have been busy with my health issues and doctor's appointments, etc. It was just what we needed amidst all of our daily life responsibilities. I even got a bit of a break from the constant pain that consumes my every waking moment. The pain is always there, but every now and then when I'm enjoying myself, I get distracted enough that it's not center stage quite as much.

Grandbaby approves!

My loves enjoying the peaceful time.

Had a bath in the sink! I feel great!

There was a sushi restaurant across the street from our hotel, and since it was on the second floor of the building, we were concerned about my accessibility (as usual - that's always a factor), so my daughter just went over and got us some dinner and brought it back - her treat. She's so good to me I can't even put it in words, because there aren't words great enough to match her greatness.

Yummy Tuna Sashimi!

Mom and son quality time :)

The following morning we left plenty early so we could find the place and get parked and inside with plenty of time to spare. All went well and everything went off without a hitch. Next time, however, I will do the valet parking like they suggested. It's just too busy and too much hassle when it doesn't cost any more to let them do it than if you do it yourself.

Sunrise in Minneapolis

U of M here I am

It's nice to actually look forward to revisiting a medical facility. I will be going back many, many times. I hope that each time is as pleasant as the first.

My final step in the process was to leave 7 vials of my blood behind for testing. I have yet to receive the results, but let's hope they are good. None of the tests are anything I want to come back positive, except the copper levels. He said occasionally copper levels can be too low and that can cause problems such as mine. So, that one can be positive if it wants, because that's an easy fix!

Never Give Up

University of Minnesota Health Clinic And Surgery Center