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