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

Chronic Illness: How Quickly Things Change

My life used to revolve around work, exercise, and whatever little bit of social life I had.  Now it revolves around doctors appointments, tests, medicine refills, and constant worry about what the future holds. A person can go through life day after day doing the same routine, never knowing that one day it can all change and become a very different kind of routine. The kind of routine some people are lucky enough to never experience.

I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.

I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.

I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".

All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.