Tag Archives: neurological issues

General Posts

Mid-November Update

1 Comment

DSC_0968mc
There are two great pieces of news to share. First, thanks to the kindness of two of my former students and the congregation of their church, my place now has ample insulation to get me through the winter. Second, I have adequate heat in the form of a wood stove. There aren’t enough words to express my gratitude for those who helped me get both installed, either. As I type these words, a nice fire roars away in the stove, and the insulation keeps the heat in here with me. It’s a nice feeling compared to the alternative, which I had gotten to know all too well.

Physically, my days range from kind of bad to really bad. One day, the spasms will be constant and unrelenting; the next, the burning in my shoulders will have me nearly in tears (once upon a time, I thought I was kind of tough). Some days I walk okay, but others, I can barely lift my feet. The fatigue continues to worsen, too. Any amount of exertion leaves me absolutely exhausted, and I can’t explain just how much that frustrates me. There are so many things to do, and I can’t do any of them.

I know I’ve expressed that I don’t have a confirmed diagnosis, but the neurologist and I are both fairly certain it’s MS. The symptoms all fit, and it makes sense with the predisposition to autoimmune issues from the Celiac (not sure if “from” is the right preposition there, so scientist friends please don’t bombard me about it). I haven’t mentioned MS on here before, I don’t think, because of the lack of a confirmed diagnosis, but that is the most likely culprit. The good news is it is manageable if I can get health coverage.

Speaking of which, my medical review for social security is next month. With any luck, I can get approved and get some kind of treatment and hopefully be able to get back to work. Mentally, some of the concentration and memory issues seemed to have eased off, so if I could get the physical issues under control, I could at the very least hopefully get back to writing regularly. More than anything else, I want to get better and get back to doing the things I love, the most important of which is being an active father for my sons.

I’m grateful for everyone who has contributed to the fundraising campaign. That money got me through September, October, and November, and without you, I really don’t know what kind of shape I’d be in right now. Hopefully, the medical review will prove beneficial, and I can get income from disability until I can get well enough to fend for myself. Until then, my situation remains pretty desperate. I still hate begging for handouts, and it eats away at me to have to ask, but if you could please share the link around and help me get through the next couple of months, I would greatly appreciate it. Once I’m well and back on my feet, I vow to pay it forward to others in need.

http://www.gofundme.com/brotherhood

General Posts

A Much Needed Rant

7 Comments

a331c5986ab86b2d4462f6a238736ad7bdceb5032398465734c7e358289f689c
For the last three plus years, I’ve lived every waking second in some degree of pain. Up until June of this year, I endured this pain and soldiered on because I held out some hope that maybe one day things would get better. Now, the pain gets so bad that sometimes I wonder if I can take it for much longer. Most nights, I awake from a dead sleep calling out in pain. My left hand is nearly useless from trembling, numbness, and constant twitching. I can barely walk because I literally cannot tell how high my feet are off the ground and because the muscle spasms make my legs hurt so badly that the very act of walking is painful. Now, any amount of physical exertion exhausts me within minutes.

I feel used up and discarded, and for the first time in my life, I regret moving back to East Tennessee to teach. This state does not value education or educators. It does not value literacy. I regret allowing some misguided ideology that I needed to come back here and teach because if not me then who would do it. I was a fool for not moving to New York or LA and writing for TV or the movies. I should have been selfish and gotten as far away from this backwards, pill-popping, illiterate state as I could. For the first time in my life, I’m truly ashamed to be from Tennessee. I’m ashamed of this place and the ignorance and corruption which govern it.

I’m angry and bitter, and I feel completely and utterly hopeless.

General Posts

Update on My Status

2 Comments

DSC_0968mc
I just want to thank everyone who has helped out with the GoFundMe that Dave Mattingly started to help me while I deal with this neurological issue. The outpouring of love and generosity has been quite touching.

I got turned down for TennCare, mostly because the state of Tennessee, in its partisan nonsense to go against the president on every possible issue regardless of what that does to its citizens, decided not to accept the Medicaid expansion money. But that’s a different post for a different day. The end result is that in this state there is no safety net for someone like me, so I’m left without a confirmed diagnosis and without medical treatment. Because of that, I’m trying a few different alternative treatments for relief of my symptoms such as acupuncture and herbal supplements. So far, the acupuncture seems to have reduced the spasms somewhat. It’s not much, but at least it is a start.

I’m still not fully comfortable asking for help like this, but my current situation truly feels desperate. I don’t have my medical review for Social Security disability until December, and then who knows how long it will be before a decision is reached? In my current state, I can barely walk and cannot exert myself for more than a few minutes before I am completely exhausted. I’m also in serious pain every waking moment, which gets old. There are so many things I still need to accomplish, but I’m not even up to mowing my yard right now.

If you are able to donate to the GoFundMe, it would help me get through the next couple of months. My place currently has virtually no heat. The only thing I have that still works is one small electric heater that sits by my bed. My preference is to install a wood stove to keep the electric bill down, but it takes money to get everything I need for it. The ceiling also needs a lot more insulation before it gets much colder. A couple of friends have agreed to help me with the labor since I can’t do it myself, but the materials are beyond anything I can afford in my current circumstances. Also, I need money to continue with the acupuncture and to see a nutritionist who may be able to ease off some of the symptoms.

I’ve accepted that I will not get to have my kids for our regular time this winter because of my health and financial conditions, and everyone who knows me knows how much that hurts, but that’s my reality. For now, my goal is to focus on treating these symptoms until I feel well enough to work, and then getting back on my feet so I can see them either late spring or summer. No matter what, I will not give up fighting to get better because I still have too much to accomplish, like being an involved father until they are much older. If you are able to contribute, please help me through this difficult time.

http://www.gofundme.com/brotherhood