Tuesday, May 3, 2016

Quickie 7 Series

So, the new chair they fitted me for is a Quickie 7 series.  It has the most amazing back rest, and while being fitted for the chair, the OT was amazed that I've been in my current chair for so long, especially considering I've been sitting all wrong. This current chair has me hunched over, and my hips and back are curving inward at a very unhealthy level. This explains the curve in my lumbar that was found in my last MRI. That is permanent, and was caused by sitting wrong in a wheelchair that was never fitted properly for me. *sad face*

I am praying with every fiber of my being that this new chair goes through because now that I know how terrible my posture has been in the chair I use all day, every day, just sitting in it gives me terrible anxiety and I can't wait to be sitting in a chair that will alleviate a lot of pain and issues. Besides my posture, the new chair is lighter, more narrow, and much easier to get in and out of my car. Life in general will be much easier to live with the new chair. I sure hope Medicare approves at least most of it. I will find a way to scrape together the rest.

She said it can take up to 3 months to find out, but at least it's in the works.

Now, the next step is to get into Physical Therapy, but that will have to wait until my daughter has day care situated for my boy. I will still be crippled up and in need of PT until then.

Monday, May 2, 2016

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

Sunday, March 27, 2016

Happy Easter, Peeps

Easter Sunday Thought Of The Week: Losing My Faith

After getting sick, I wondered how there could be a God that would allow something like this to happen to me. A single mother who has always tried to be good, and do good. A person who was trying so hard to be healthy and change her life for the better, and for the better of her daughter.

It's hard to continue to believe there is a God, or even a higher power, after you suffer such horrible tragedies and nothing seems to get better, only worse. I fell into depressions and simply lost my faith and my willingness to believe there was any good left in the world.

Drinking for many years and hanging with the wrong crowd only compounded my lack of faith. I really had no reason to believe in a God or anything greater than me that could be capable of doing any good. It was easier just to give up hope than to struggle with the why. The words "Godless bunch" really rang true to me back in those days. It seems many people who go through terrible tragedies lose their faith with God and turn to a darker side.

Even through my most recent struggles, I have been trying to get back to having some kind of faith. What that faith lies in, I am still unsure, but I do know there is something powerful that can help steer us back to a place of good, and a place of healing. It's important to hang on to something that gives a person hope that things will get better. As difficult as that can be to do, I do feel it's extremely important.

This post has been in my drafts for a while, and today I felt was the perfect day to finish it and get it published. I am still unsure what I truly believe in, and on days like today I really just go through the motions, but I can respect the story, and I can respect others' faith in God and in Jesus. Where my faith lies remains a mystery, but I am getting back to a place of faith and that's good.

Wednesday, March 23, 2016

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.

U of M Health Clinics and Surgery Center
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!

low beds platform beds wheelchair accessible
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.

Minneapolis minnesota new stadium
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.
Aloft hotel grandson approved
Grandbaby approves!

Grama shannon's grandson and daughter smiling and laughing
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 health clinic and surgery center
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

Saturday, March 19, 2016

Thought Of The Week: Being Disabled Sucks

For those who have been lucky enough to never have had to experience what it's like to be disabled, it's more than just an inconvenience. It can be terrifying at times. Imagine getting ready to go on a trip, but every hotel you call has beds that are too high for you to climb into, and there are no ladders or any way for you to get into them. That's the only way I know how to describe the feeling I just experienced. Add to that, it's not as if I can just sleep anywhere. My body is so racked with pain and so bent and tight, that the only way I can almost sleep is on my side with a pillow between my knees and of course my legs bent (because they don't go straight). I'm also 6' tall so I don't really fit just anywhere.

Because I am unable to stand up at all, I need a bed that's low enough that I can just transfer over from my wheelchair. In other words, a platform bed. All the hotels near U of M that offer discounts to patients don't have them. If I could still stand up, this wouldn't be an issue, and I could save a lot of money by booking with a hotel that offers discounts, but since I can't stand up, and can barely even transfer from my chair to any other surface, I had to find a hotel that offers platform beds and pay the price. It was either that or stay in a cheap, seedy motel really far away from U of M. Because of U of M's location, everything is expensive! How in the world do they expect someone like me to be able to afford this! Especially if I have to go down there multiple times! Thank God for my GoFundMe page and all my amazing supporters who have donated so far! Bless you all! I knew this was going to be a big expense, but until I really started making the plans and calling around for an accessible room (and bed), I had no idea what I was truly facing.

These are the kinds of things someone like me faces every single minute of every day. If it's not the bed issue, it's the bathroom doors aren't wide enough for my chair (yes, even the "accessible" rooms). Or, the doors are wide enough, but they open IN to the bathroom so once I'm in there, there's not enough room to close the door because my chair is in the way. People who have never had to experience being in a wheelchair and being confined to one, don't really understand all the tiny issues that become huge issues for us. Even my friends and family say to me, "I would have never thought of that -- it's amazing the things we take for granted." How true. My life is filled with nothing but obstacles; from too narrow doorways to rugs on the floor that my casters get caught up in, to things on the floor that I have to bend over and pick up because it's not like I can just step over them. It's a constant battle to just get from point A to B.

So, I found a hotel with platform beds, and it's only about a mile from U of M. It's actually a very nice hotel, and wasn't too insanely expensive, thank God. I am looking forward to relaxing there Sunday night before my appointment on Monday morning. I guess if I have to go through all of this, at least I can stay in a nice hotel and enjoy some small luxuries as best I can. I'll just eat less.

Never Give Up