Had a good day today

at Physical Therapy. It went very well.. I had pretty good sleep last night (other than waking up about 4:00a.m. to go to the bathroom).
Cindai, my therapist worked me hard today and had me do quite a few new exercises which was a nice change. She even had me stay an extra 15 minutes to finish up on the reclining bike.

I've been kind of wore out the rest of today though..the legs are pretty sore...but a good sore.

Otherwise, still working on getting the bedsore healed.. Wife says it looks pretty good, so I am hopeful that next Tuesday when I go back in to the wound center they'll be pleased and I can start water therapy.

That's about it for now...probably write some more tomorrow..

Only 4 Days since the last post

so I figured it was time to do another update.. Well, the last 4 days have been pretty uneventful. I haven't had any bad days so that is good.. I have actually been getting some pretty good sleep the last couple of nights although my wife said I was moaning in my sleep again last night.. I know I woke up once and my left leg was throbbing pretty good but I went right back to sleep..the only thing that is really bothering me at all today is my left ankle..

My wife has been keeping up on my bed sore and changing the dressing 3 times a day. She says that it looks much, much better. Hopefully it will be all healed up by the time I go in for my follow up at the wound center. Then I might just be able to start my water therapy.. that would be good..I'm looking forward to that.

So, I guess that's it for now..I have PT tomorrow so I'll probably post again after that.

6 days since my last post.

and the reason is because the last six days have been pretty crappy and I just didn't feel like posting anything.
That first day I took the new meds (Amitriptyline) I slept great.. but Friday, Saturday, Sunday, Monday and last night I have slept like crap.
I did go to my wound center appointment yesterday..My bed sore (or as they call it..a pressure ulcer) wasn't too bad which I was glad to hear...but the doc says...no sleeping on your back.. no pressure on the area of the sore at all..other than to sit up briefly to eat, go to the bathroom etc..
That is part of the reason I slept so bad last night..I have a terrible time trying to sleep on my stomach so I try to sleep on my side which I can do for a short while but then my hip bone area gets so friggen sore that I can't stand it so I have to turn over to the other side.. and on and on all night long..
I am in more pain (my leg esp) today than I have been since I have been home from the hospital.
So, back to the bed sore.. I have to try and continue sleeping on my stomach or sides for two weeks.. and then I go back for a follow up. The doc says he better see some improvement by then or they may have to admit me to get this thing healed up.. I guess I'll do my best to stay off of my back and get this healed up..
Anyway, I gotta tell ya...I know there are diseases and disorders far worse than what I have and I know that there are other people that are having far worse problems with their TM than I am but I would not wish this on anyone.. and I know that I am very early on with whatever recovery I am going to make.. but the days have such ups and downs..
I have what I considered a milestone when I could start moving my left ankle and toes a little bit and then I have days like today where I feel absolutely miserable..
This is the wildest roller coaster ride I've ever been on..
Till next time... take care everyone..

Update from yesterday and today

Went for my three week followup yesterday with my Neurologist.. I discussed all of my questions and concerns with him..
My main concerns were the fatigue, leg pain, bed sore, bowel issue and mood swings.. Fatigue was something he addressed because not only do I get tired out just doing basic things like showering but it has been compounded by the lack of sleep lately which has been brought about by the leg pain which also hasn't been helping my mood swings. So, he upped my Zanaflex, took me off of Lyrica for the nerve pain and prescribed Amitriptyline which should help the pain and also it is an antidepressant and also helps as a sleep aid.. I took my first dose last night and my wife actually had to wake me up this morning to get ready for my PT. So, I'd say that it worked pretty well.
He looked at the bed sore and felt that it was very superficial..prescribed some cream for it and said to go to my appointment on Tuesday and they will get me fixed up.. he was not terribly concerned with it...so that relieved me.
For the bowel issue..he prescribed me a suppository that I am supposed to use in the morning after breakfast and he said I should be good for the rest of the day.. cool..!! Which, if that's the case then I'll be able to rid myself of these blasted diapers.. woohoo...
So, with all that being said..If I can get some of these issues resolved and just concentrate on my PT maybe I'll start making some progress..
Which, I went to my PT today..it went pretty well.. I was still a little groggy from that dose of Amiltriptyline. While I was I at my followup yesterday I asked the doc about water therapy and he seemed to feel that would be a good thing..so he wrote me a Rx for that and I discussed that with my Physical Therapist today and they felt that would be a good idea also...but I have to get my bed sore healed first....So, I will be doing PT twice a week as I am now and then Water Therapy once a week for 12 weeks.
Returning back to work... that's up in the air for now.. Physically.. I would be exhausted in an hour.. and mentally... I can't even imagine right now..
That's all folks..

Well....

I was supposed to go to the Wound Center yesterday...turns out that my doctors office couldn't get an appointment at that wound center until today...so the appointment was made for today at 1:45pm. We get a phone call from our doctors office this morning saying that our insurance isn't going to cover going to the wound center that my doctor preferred...my insurance company wants me to go to the wound center at the hospital that I have been going to.. Okay.... so my doctors office schedules the appointment...FOR NEXT TUESDAY 24th...because the friggen doctor is on vacation...come on now...They only have one doctor for an entire wound center in a hospital..???

So, I am going to call my insurance tomorrow and see if by chance they might let me go to another wound center somewhere here in town..before next Tuesday.. It seems to me that this bedsore is something I should be seen about as soon as possible... dontcha think..??

Tomorrow, Wednesday is my follow up with my Neurologist..I have a bunch of questions for him as does my wife..we'll see how that goes...

Also, while I am talking with my insurance company tomorrow I am going to ask them if they will cover me for an appointment with the Neuropsychologist that I met with in the hospital.. I really think I need to get in and talk to him...my mental stage right now is very topsy turvy.. and my wife is at her wits end...she told me the other morning that when she wakes up she wonders if she should even say anything to me or not depending on what my mood will be.. I can't put her through that...she has been an absolute angel and she does not deserve having to worry about what my mood is going to be.
Well... I'll post some more tomorrow after my follow up and my conversation with the insurance company..

A better day today...??

Well.. I hope today is a better day..
I did not update yesterday because I was in a really bad mood all day.. I do feel much better today..(mentally anyway)
I slept so horribly last night and the night before.. my leg pain is awful...my wife said I was moaning all night long...and I know this bedsore is on my mind.. I think I'm mentally waking myself off and on all night and moving myself from side to side.. I know I'm not sleeping on my back at all.
I woke up yesterday morning at about 6:00am and felt miserable all day long.. last night I slept about as bad and when I woke up this morning at 7:00am my legs were throbbing.. but, as I said..I'm in a better frame of mind this morning.. I hope it lasts..!!

Yesterday my wife had called in to my doctors answering service to see if we could get something better for my pain. One of the doctors called her back and since is was Saturday he said he couldn't call in anything that was a narcotic since he didn't have my records or anything..
He did call in a RX for Voltaren... my wife went and picked that up and I took one when she got home.. It seemed to help somewhat for the pain but after I took it I had this really odd feeling in my head the rest of the day...I haven't taken another one yet..
After reading up on this stuff apparently dizziness is one of the side effects...I don't know that I felt dizzy...but I know I felt weird..

Anyway, I'm going to try my best to keep my good mood up.. I hate putting my wife through these mood swings I'm having.. I think I'm going to schedule an appointment with the neuropsychologist tomorrow..
Chat later... :-)

Superstitious...me...nah...???

I have never been superstitious at all... Friday the 13th's have come and gone many times and I laugh about it...

But today....friggen today of all days...for "bad luck" to hit....let's add one more thing on top of the TM...
My wife and I were going to head back up to Erie for the weekend.. for a change of pace.. and my mom's place is so quiet and peaceful..it would have been a nice change...so I'm in the shower this morning getting ready to go...and lo and behold.. I discover a bedsore on my "backside"...what the hell... I have my wife look at it and the first thing she says..."It's a good thing you can't feel it" (the area it's in is totally numb)..I'm thinking ...great....and I start to have a meltdown...I'm about ready to throw my walker across the room... and then I think to myself...no dumba**..If you do that and your walker breaks then your screwed...you won't even be able to get off the bed..

So, my wife calls our family doc... put Desitin on it, keep it clean and put a wet dressing on it... Doc is going to get me into the wound center on Monday...
Aaaaaaaarrrrggggggggghhhhhhhhh

Well..went to Physical Therapy today..my therapist was a different girl today...the one that I was supposed to be seeing all along but she has been on vacation.. She had me do some different exercises than what I had been doing..which was good..and she also had me doing some stretches..which is also good..my friggen hamstring muscles are SO tight.

So I spent some time working on those stretches... I tell you what...those stretches wore me out...
now..I haven't been sleeping very well lately anyway because my left leg aches so I am very tired anyway..but after PT today...I was whooped!!

I had planned on stopping by work today today to see everyone but I blew that off and came home and relaxed. I did call my HR lady at work to check on my short term disability and when it is going to run out...she tells me that she got an e-mail from corporate saying that it ends on the 23rd on June.. so I guess I need to find out from the doc if or when he might release me to go back to work and then go from there.
Next week will determine whether or not I'll get to keep my job or not..
Later folks... talk tomorrow

June 11th 2008

For those that are not aware.. My experience with Transverse Myelitis started at about 1:00am on the 14th of May while my wife and I were vacationing in Erie, PA visiting my mom.

I spent 6 days in Hamot hospital in Erie going through a battery of tests (cat scan, 2 MRI's, Lumbar puncture and quite a few blood tests).

By my second day there I had been diagnosed with TM. I went through a 5 day course of Solumedrol (steroids) to see if there would be any improvement and there wasn't but now I have come to find out that the early administering of the steroids helped my condition from worsening. (that's a good thing)

Now, the next thing was that the doctors were working with my wife and I to get me back here to Canton since we live here.
After the 4th day there we had a case worker that contacted the hospital here in Canton and found they had a good rehab unit.. arrangements were made to transfer me to Mercy Medical Center. On the 20th of May my wife and I made the drive back here to Canton and I was directly admitted to Mercy. I started a pretty rigorous Physical and Occupational therapy program...twice a day for an hour and a half each day..I made some (very minor) progress during my therapy..(I gained some strength back) but my progress was very slow.

I was at Mercy for 8 days and then they decided that I would be better off doing outpatient physical therapy..twice a week there at the rehab unit and the other 5 days doing my exercises at home.

So, on the 28th of May I was released to come home..It has been nice being home.. just getting back into my own surroundings..
As far as the TM goes... about the same so far..although I have gained some minor movement back in my left foot..(I can barely wiggle my toes which is something I could not do before)
I get so blasted tired so easily, I have to self cath myself since my bladder doesn't work and I essentially have no control of my bowels..(so, I get to wear diapers..how humiliating that is)
My legs have spasms and my left leg aches constantly...sleeping is a chore since my leg bothers me all the time so consequently I get very little good sleep. To add to all of this the emotional stress has been exhausting. I am emotionally and mentally drained...

That my friends is a quick overview of what the last 28 days have been like...

I will post more as I think of things to say and as other progress happens..I will try to make daily updates even if just to say "HI"

I also want to thank all my friends and relatives for their words of encouragement and humor...
Thank all of you ...you mean so much to me..
and I want to thank my wife Liz...she has been amazing through all of this.. I love her so much..!!
Chat with everyone soon...
Kev