Wednesday
update....
Okay.....Let's see..Monday I had PT...things were a little touchy because of the toe...but overall..not too bad. My sneakers gave it some support and I also had the toe wrapped in some gauze and taped to the next toe. It was sore...but PT wasn't too bothersome...only a couple of times did it really smart. So, that was good...
Today, the toe feels better...it is the 4th day now since it happened, the swelling has gone down and even some of the pretty colors are going away. I did kind of bump it yesterday while putting on my show...and it felt like lightning shooting through my toe...so it's still sensitive.. but at least now it's not as sore as it was.
I was up early yesterday morning (4:00am) because my legs were really bothering me...I was having that throbbing, achy pain that I get now and then. I still think that this cooler weather has to be playing hell with me..because there are things bothering me more now than they were before...mainly in my legs and the "numb" area in my backside.
This morning I was up at 2:30am to pee and then I went back to bed and was able to fall back to sleep...but at 6:00am I was awake again with my legs..
Yesterday, I was reading through my emails...and I'm subscribed to the Transverse Myelitis Internet Club (TMIC) which is an email support group branched off of the Transverse Myelitis Association website.
I read one of the posts yesterday and it was so emotional that I just broke down... I'm including part of the post here...with no names...
"We are now spending a few days in xxcityxx before returning to our home in xxstatexx. Today we met a lady named xxxx, and when we were talking she asked if I had an accident since I was using the wheelchair. I have had a lot of spasms the past few days and not walking very well, even with my crutches. Anyway, when my husband told her that I hadn't had an accident but that it was caused by a virus, she immediately asked if I had Transverse Myelitis. When I said YES, her eyes welled up with tears. It was a real intense moment. Her father had gotten TM and it was a slowly progressing onset for him, and he had a very hard time getting a diagnosis. They thought he had Guillian-Barre (sp?). It took one and a half years to get the TM diagnosis, and he was in excruciating pain. Unfortunately, he just couldn't deal with it, the pain made him crazy. He didn't want to get involved with any support groups either and wouldn't go onto anti-depressants. He was one of the unlucky ones who didn't get any improvement. He ended up committing suicide to end his pain. This was a real bonding moment for the 3 of us.
I can't tell you how much pain this woman and her family had gone through due to this. She's better now, but she says that her brother is still really a mess."
I just wanted to include that because I feel so bad for that woman and her family... I think maybe I can somewhat understand the turmoil her father must have been going through...only because I've seen what a bastard TM can be...
Sometimes the mental issues can surpass the physical ones...and I think I can also understand that...
I try, try, try to stay happy and upbeat and positive… I’ve always been a very positive person….but the weight of all this is so hard to swallow sometimes….
I feel bad for my wife, because she has to put up with my tirades. It seems that almost everything, not just the TM, but everyday stuff just pisses me off sometimes and she gets angry or upset at me, understandably.
Sometimes I get that overall depressed feeling and I’ll just start crying… I know that I’m not the only one that has dealt with TM like this…I’ve read many other postings from people that are affected in much the same way as I am…and I know that we all have different ways of dealing with this. I just want so bad to get my head back on straight again. Hopefully through my counseling and the meds I’m on that I will be able to do that.
So, here’s my attempt today at ending this blog posting on a happy positive note…
I’m including this song…one of my favorite songs by one of my favorite groups…AC/DC. The song…It’s a Long Way To The Top If You Want To Rock and Roll.
I can relate that to having TM…and if you watch this video…CRANK IT UP…!!! The only way to listen to it..!!
Till Next Time................
3 comments:
Kevin, there is a definite connection with TM and depression. Dr. Kerr and all his pals at John Hopkins have confirmed that. It's not just that we have lots to deal with each and every day, there is a biological, physiological component to all this. I am on anti-depressants at the present time, many of us are. It is truly one day at a time for all of us TM'ers...keep up the counseling and medications. I pray for all of us with TM..peace to you sue thomas
Loved the video, kevin.
Are you going to get the new album from 'da boys'?
That would be a tour to see!
Anyway, you keep the spirit up for all of us who have you near to our hearts!
I was at a fundraiser for Breast Cancer last weekend...a bunch of local vocal groups singing...what an inspiration! And the lady who hosted is a breast cancer survivor, and very outspoken here in the province. She had a double mastectomy, then her mother, then her sister and then a cousin...they like to say there is not ea 'you know (insert slang for breast here---rhymes with bit, starts with t)' amongst the lot of them!!!
Anyway, her partner was sitting with her when she had the first surgery, and they took off the bandange. She said to her, Oh my god, gerri, I can see your heart beating....that is because it is now closer to the surface. And it is so true that she is such a loving person!!
I don't mean to compare her to what you are going through, kevin, but I just wanted to share it with you, to share some strength and positivity!
love to you
Donna
Kevin, you can email me anytime to vent. I'm sorry about your toe, hope it's getting better. It's sometimes hard for me to remember that there are others who are worse off than me, especially those with some kind of cancer. When I was going to the oncologist's office, it was really brought home to me by the sheer number of people sitting in the waiting room how many people are afflicted. I have worked with several people who have had cancer - breast, colon, lung then brain cancer. My first cousin died when she was 23 from leukemia. Her mother died before that from brain/spine cancer. But you're right, TM is a bastard because they can't really do anything to cure it and it seems to cause a host of other problems in addition to what you start out with. I know I didn't want to admit that I was depressed until my neuro actually asked me about my emotions. Didn't know anger issues such as you mentioned were part of depression, did you? I've learned a lot from researching this disease. Seems like there should be more. Anyway, take care and don't be afraid to email me when you need to vent! That's what I call support!!
Terri
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