Had a little bit of an exacerbation. Bad fatigue. Tingling in legs (and my feet got hot?). Hands were shakey. Speech slurred. Balance was
off. Thinking got slow. Classic. I called new doc man and went in to see him. His approach is a little different and again less
aggressive. Might be a better way. I'll try it and see.
It seems each time I have a little set back, I go through another re-evaluation of what is important to me. Not trying to be melodramatic
but maybe that's God's way of telling me to "look around you fool". I do get more mellow. Now I have to get my behind moving to do some
of the stuff I want/need to do.
Also, got to thinking. When is Enough, Enough? Got to write a paper on that.
Had a dream last night, strange. Think I will write a paper on it. Bottom line was that most of my work peers were uncomfortable with
having me around. They did not accept my limitations and begrudged any accomodations. It didn't really happen in real live but it is
something to think about. Maybe I ignored it. Well, I think I will write about it and see what come out.
I saw my new neuro today. He seems to be very patient oriented. It is obvous that he has more MS patients than he can deal with and
that the clinic needs more funding. I got the taste of the real world. Atlanta had a full blown MS clinic with nurses having years of experience
with MS patients. I was spoiled. This clinic focuses in maintenance mode. My instructions are do keep doing what I have been doing
and call in if things change. This is far different than the aggressive nature of Dr. Bill. Well, we will see.
It has been a while, again. I am not much for keeping a daily journel even though I want to. Today Papa D is being honored for his long
career as a minister. I hope we also celebrate his next half of life for he has a lot of living to do. If you have seen other parts of my page you
know we have moved. I love it so far and I have not missed Atlanta yet. It must be an advantage of having MS. As baggage I see our move as
an adventure, a new life to explore. I have to work carefully to make sure MS does not keep me locked into ToDo's and inside. We will
see good diary, and maybe you can help keep me focused. Goals:
- lose 50 pounds, ASAP
- do lots of photography
- find some to to let me volunteer
- laugh a 'lot' more
Kids had their first day in South Carolina school. Becky got final job offer. She got the job she wanted, that she could not have gotten in Atlanta,
making a higher salary than she had at Emory. Now all I have to do is sell the house and work out how I am going to get good MS treatment. Film at eleven.
Is this the right thing to do? That has been the question I get asked by everyone. Yes, it is. The kids are not so sure but Becky is excited.
I have known for a long time that this needed to be done. Being close to her extended family will make life a lot easier for Becky. It will take a big
load off of me. Now, if I just can't do it then there is a family member who can fill in. Yea, I have been in Atlanta 30 years but a house and city are
just places. Becky, Sean and Meredith are my home.
Becky and the kids are off to Charleston. The kids will register and Becky will finalize the job. She got, going to get, the job she wanted. I'm
here to sell the house. A family man I am. It was lonely seeing them drive away and not knowing when I would be with them.
Becky's last day at Emory. She already has interviews lined up for next week in Charleston. They got her resume and started calling.
Been something of a week. Becky resigned last Tuesday, 7/14, after 18? Years at Emory. She is so turned on about moving back home that I
don't think it really bothers her. The kids are still adjusting. We cursed the Net and found posted job opening at Medical University. Sent out resumes for
five possible positions. This thing is really gonna happen.
We have been talking about possibly moving all week. Becky has been nervous all week about hearing something back. I looked at dollars,
saw it was possible even if she wasn't working, and asked her if she really wanted to move. She said yes. So, I said let's do it. She agreed, without a
job in had. This was a surprise. We told the kids we were moving. Stunned was their reaction.
Over the 4th we visited my wife's family in Charleston. A friend of the family asked if Becky might be interested in a job opening up in a local hospital. It is a
prize so a resume was mailed today. Moving to Charleston has been in my head for a while but I didn't think Becky would consider it. This could be interesting if
she is invited to interview.
Heat. That is how I remember the month and not much else comes to mind. People just can't understand what heat does to an Mser. Even if the house is
cool/cold, when it is hot outside the weight of it brings me down. Every single task has to be followed by rest. I can deal with a lot but to feel this tired every
day for the rest of my life is something I do not look forward too.
Days just seem to come and go so quickly. Now that I have all the time I need (ho, ha, ho) it seems I have no time at all. I get a few things done
and it is time to pick up the kids. Then the work starts and the tension builds until bed time. Again, I look not forward to the summer.
Well, now I have stomach problems. I feel full to the limit and can not eat anything. Interist thinks it may be MS effect on muscles. MS guru's think it
is medical, only. Ho-Hum, around the May Pole we go.
7:00 The day starts great. Humor is with me and the kids are acting good. I have the drive to do a few of the chores I have been meaning to do.
8:30 Kids to school. A littlle warm this morning but my air conditioning is set low.
10:05 Starting to feel a little slower.
10:15 Arms are starting to hurt a little when I use them.
10:20 Head is getting foggy.
10:22 Speach is starting to slur. Seems I can't think of what to say fast enough.
10:25 Neck hurts. Head is heavy. Getting a headache. Eyes starting to close.
10:26 Stumble to bed. By the time I lay down I am totally out. I wake up 3 hours later but have only about half the energy I had this morning.
This is MS fatigue. It is not just getting tired nor needing more sleep at night. It comes on quick with little or no warning. This is
what I deal with every day and what keeps me from doing a lot of things I want to do. It is kind of like dying a little bit each time
and not being able to stop it.
Hooray Viagra! It ain't l 'Spanish Fly' but by golly it helps.
Last week I took my monthly steriods and this past weekend was my C&B. It is never any fun but this weekend everyone was
gone so I got to be an S.O.B. alone. It is time when I am alone that I wonder how much MS will do to me. I do not fear my loss of
ability but I worry about my family. My son was in my thoughts this time. I do not remember being as absent minded as he is but
maybe I was. I worry about the time he will have to assume more responsibility before he is ready and how he will learn when I am not there to guide.
Yesterday was better, until night. Ran the air conditioner very low and had much more energy. In the evening, had a lot of
todo's and do'ed to much. Hit the bed by 8:30. Sean forgot rule about coming straight home from school. Since he is already
grounded, took away guitar. Felt real nasty. (During the night, he wrote me a very nice note and left it on the computer. You never know.)
Summer started. At least the heat hit yesterday. I was very tired and slept all of ther afternoon. This fatigue is more than
frustrating. I get angry. Even with all that rest, this morning I woke up tired. Sometimes I wonder why I try to start anything. Hell, fatigue
seems to always stop me from completing.
I woke up this morning, or rather didn't wake up, totally exhausted. There is nothing new about that but I wonder why it happened
this day. Today I had an important session with my MS AQ group, but didn't make it. I had an appointment with GT to discuss
volunteer work that I have wanted to do for over a year, but didn't make it.
I wonder if it was because of MS or sub-consious laziness. This is a hard disease to live with.
Well Mr. Diary, there are many things I could write but only one keeps poping up. All my life I have feared nothing, to a foolish level.
As a youth in school I was considered 'Most Likely to Die from a Stupid Stunt' However right now I am scared to death of what is
happening to my family because of what is happening to me. It is not because of a recent Crash & Burn bur results from a very long
time of things not being quite right.
I just don't know. We followed the numbers. We have gotten professional help. I take every drug that might make it better.
I listen to support groups. But things are not the way they need to be. I just don't know.
I guess I go through these cycles. It will probably be over tomorrow.
Stay tuned, film at eleven.
Today is to be marked in history. Today I did somethin I have been waiting to do for forty years. You see, my 15 year old son's
middle name is James. I picked him up at school and slide into the passinger seat. When he got into the car, I said,
HOME JAMES! just like a rich dude.
So, where has my diary been the last couple of month? There is a lot to the story and I will add stuff over the
next couple of weeks.
OK, so I'm not keeping my diary very well. After all, it wasn't a new years resolution. I might do better ....... and I might not.
My New Year's Resolutiions
Make time better quality with my family.
Make Aqua exercise a routine.
Lose 30+ pounds.
Find a volunteer service and participate.
Make ten more friends online.
Will keep you informed of my progress.
Hey, it's the end of the year. So to summarize, had a good Christmas, enjoyed being with my family, have
all that I want, and believe next year will the best one of my life.
Back home from visit. Great trip. Withdrawel from five day series is very tough today. Shaky, hard to concentrate. Limbs weak.
Slept twelve hours and could go back to bed now. Broken foot hurting. The steriods were helping with the pain. Guess it's back to
grin and bare it. Just love these opportunities. You get to learn so many new things about yourself.
For me this has been a great Thanksgiving. Even with another broken foot and on a five day series it has been great to visit and stay
with family. Even with some pain, discomfort and limited mobility it has been both enjoyable and relaxing.
There is a medical note. This five day series has been unlike the others. At no time did I receive that burst of energy normally
expected from steriods. With each treatment I got a little shaky and had periods of hot and cold flashes but nothing major. The
steriods did help the pain in my foot by decreasing the swelling. This time I was able to sleep and took naps each day. After each
treatment my foggy head would clear up but seemed to return the next morning. I hope this change in my reaction is not signaling
some other change in my MS. Film at eleven.
We made it through the week OK with just a little fussing with Becky on what I could and could not do. The ortho doc said I could not do the
MS AQ thing for at least a month but we will see after the swelling goes down. I really want to do that program. I am beginning to feel normal
again except the foot is slowing me down, but I feel good most of the time (thanks to steroids).
Today Becky drove to extended family in S.C. for Thanksgiving. She would not let me do any driving so I got to read and look at the roadside.
Pleasant trip, for me. I really enjoy being with my inlaws. Does that make me weird? And I am looking forward to that food tomorrow.
No doubt about it, my monthly steroid treatment was not normal. I did not get the normal rush and even slept the first night. The C&B
started the next day. When I hit bottom, I did not climb back up to a higher level. Weakness in my legs caused me to fall a couple of
times. The normal muscle tests at MS AQ showed all levels were down. It is definitely an excerbation in progress
To top things off, yesterday I fell again and broke my leg in the same place as the last time. Not a good sign.
So today I started the five day series of steriods, 1000 mg IV daily. It messes the system up but it does help to level things out. The
orthopedic surgeon put a velcro brace on my leg and told me to stay off of it. (fat chance) Up and onward.
Now, where was I? Did the steroid thing. Had a little bit of a rough time. In fact the next few days were difficult, more so than normal
with my monthly treatments. Unusal C&B. All the way through Friday my body has felt like it was hit by a truck. And, new development, right leg
seems to be weaker. Have not been able to stand or walk very much. Seems some muscle tone is flat in the hip and upper leg.
Do not believe it is perminate but having to delay doing the MS AQ thing until I can use my legs enough to complete the
measurement routine. If I got into the pool I can see my leg giving way and scaring the lifeguard to death. It will probably be best for
his heart if I stay out of the pool for a couple of days. BUT DAMN, I WANT TO KEEP DOING IT!!!!
Bad day at black rock. Had my monthly steroids, started the MS_AQ thing, and did the balance testing. The
balance thing was rough for me. I had forgotten how right side dominate I was and just the testing wiped me out. Felt funny
so had the MS crew check BP. It was up a little too high. Did a little soul searching for 45 minutes and things smoothed
out. So, will take another crack at it beginning Monday.
Steriod took over later in the day. Normal reactions. Body drug through first 8 hours and then tiredness was gone. Sleep the first
night was not in the offering. Laid down and napped for about an hour then woke up in a start. Wide awake. Will try to nap a couple of
times today so that I won't be a basket case tommorrow. Looking forward to C&B either Monday or Tuesday. Hope all this stuff
is worth it cause it really burns up the old body.
Bless me cyber surfer for I have been neglectful. It has been two weeks since my last confession. So what have
I been up to? Well today I a little short term memory loss. I went to MS AQ and remembered clean underware but for got my bathing truncks.
Last week I had a very good talk with my wife. It was a start, difficult for me, to making some issues much better. Now all I
have to do is not drop the ball again. The essay Overload was the result of that conversation.
The MS_AQ is already benefiting me but it is very hard to get up and go there each day. Right now I am more tired and
sore than before the project but It is physical tired (the good kind), not fatigue tired. I have lost a few pounds and I like what I
am doing. I wonder if Ell (and her sadist comrades) really see the other benefits to MSer's beyond the physical?
(I asked SHL if she would help me become a bigomist and she didn't say no but I think that was because she was at a
loss for words. That is probably a negative. She hasn't fixed out how to handle MSer's yet (but she is a really nice person)).
MS AQ in the AM. I was more tired than yesterday but surprisingly scored about the same on testing. However,
after the bicycle I got off, put my foot down, NO leg strength, and ended up on my well padded behind. No pain to me but
I think a few physical therapists almost had heart failure. (Hey, they are there to learn about MSer's and fatigue, right?) ELL said, 'No pool
today buddy, go home.'
BIG day. Started the MS AQ today. This is a program sponsored by a state university and Shepherd to study the effects of
aqua therapy on the fatigue levels of MS patients. That is not the real name so I will call it MS AQ.
I was chosen, lucky me, to be one of the first to enter phase 1 of the study. Every session begins with baselining muscle and fatigue.
- Muscle strength.
- Stairs, the number taken is recorded.
- Arm machine, distance recorded.
- Bicycle machine, distance recorded.
- If you can still walk after the tests you are encouraged to mess around in the pool but nothing structured. That comes a little later.
My drill instructors are ELL, MAR, JIL and SHL. They are all pretty cool but do not give you much slack.
Back with the living but feel like I have been in a gang fight. Will take a couple of days to catch up. Saw the psycho
doc today. Good session. Remind myself to write a summary. Some MSer's would find it interesting.
As is normal every month when I take steroids, this month was again completely different. This month I
hit the bottom, steroid withdrawal, about 2-3 days sooner than I expected, and I hit rock bottom. These two days were shot
completely as I slept off and on all the time.
Every time this happens I always feel fear. I wonder if this fatigue will be permanent. I feel guilty for not contributing to the
family. All I wanted was for my wife to hold me and say it was OK. Instead we both withdrew. I didn't ask her. It is always a hard time for me.
Had my monthly steroids today. It started as usual. The first shock to the body gives me the weak trimbles and makes me tired. I ended up
taking a short PM nap. Next comes the nervious tension and my back get tight. At night I can stay up all night but realized it was 3 AM and laid
to at least rest the body. Did nap about 2 hours, woke up and felt like a full nights sleep. Clear headed which is not the normal morning
feeling. Body still tired. So starts another L-C&B (Launch - Crash & Burn) cycle. Have noticed over the last few months the cycle seems
to have shortened but is still intense.
Started the MS Program run by UGA in cooperation with Shepherd's. Seems I have been pick as the ginnypig, or the 1st to start each new
phase. Today was mostly fatigue benchmarking. AND I got benchmarked. I pushed a little hard on the physical stuff. The director pulled me
off one of the machines and said that was enough. She said my medical authorization form had said "Don't let him over do it." Sounds like
Doc Stu knows me better than I do. The same Monday, PLUS strenght testing, PLUS I hit the water. My kids are excited about me getting
back into the pool but I'm worried about getting out of the pool that first day of full court press. Oh well, can't dance.
BD's B'day. Wish I could have made it a bigger deal but still had some fun thanks to Meredith's creativity.
Sean turned in his 3rd paper. Can't figure out how he can do it at the last second. I proofed it first and I am glad this class is not grammer.
A relative hit the big 30 today. You know who you are. I must say even after two children and the desire for a third, she still looks '21'.
10/09/97, 10, 11, 12
MS days. The 9th and 10th were good days. I had a good level of energy and got a few things done. Felt pretty good. But then I went
to bed on Friday night the 10th and slep for 16 hours. The 11th and 12th were not good days. I was wasted all day and into the night.
Fatigue is very high and the head is fuzzy but I don't think I have lost any motor function yet. I really hope this is not another
excerbation. We'll know in another day or two.
This was the day I visited Dr. Dermo. I've got a story on that in Humor. It is also the day that GRACELYNN came back to help me keep
the house straight. We let her go a year ago to save the money. What I found out was that I couldn't keep up and the family was spending
the weekends catching up. For my piece of mind, I moved money from my beer account budget to be used for GRACELYNN. I may have to
start ferminting my own grapes but it is well worth it.
Note this day. I volunteered for something. There is an Aqua Study being done by U.G. in partnership with Shepherd's. I showed
up to be a participant. Of course I was the only male but I don't mind. Those young graduate student's ain't bad to work with, UNTIL
they get you on the machines to test endurance. After I left that first day, I can see why there were not that many volunteers. It's a long
study, 20-25 weeks, and I think I will get a lot from it. We start going three, 3!, times a week starting the 17th. Will let you know what happens.
Went to visit a distant relative in the hospital. She was a cheerleader. Two months she was in a car accident
where several died but she did not. In a coma for a month. Broke a lot of bones and there was brain damage.
She can now get into a wheelchair but can not speek. She seems unable to focus on who may be talking to
her but I believe she can hear the conversation. She has a long road in front of her.
When I see these things happen to people, ESPECIALLY kids, I get sick inside. I'm going to spend some time
with this person even if all I can do is talk and read to her. She may not respond but I feel she knows that
people are there.
Start the month off right. Figure out a new Budget. Yuck. I thought we were OK with money, and we are really,
but I finally realized that I just can't do all the housework that I expected to do. So, to survive we have to get
someone to help out at least once a week. Luckly, we know a very good person and they will start next week.
This additional expense is not in the Budget so bit fiddle time with the bucks. It will all come out OK, (I think), but
messing with the dollars that are so close just makes my tummy hurt.
BUT - it was also a special day. This is the 11th anniversary of the day I adopted my son. I remember that day. It was
very special to me, just like as if I was there when he was born. I was proud that day and even more today. I got him a
cake, gave him a present and we sang 'Happy Adoption Day' to him.
Not such a good day. Sunday's are never very good. It always seems that Sunday is a day of work because
nothing ever gets done during the week. Sunday's make me look forward to Mondays. It was
hard to find something humorous today.
I had a little problem getting a prescription filled today and just blew up at the drug store. It wasn't a big deal because
I knew my doctor would call in the right stuff on Monday, but I just went ballistic. Got to thinking about why I was so
mad. Believe that it is frustration. I got this disease which I have no control over, taking drugs to hold my own,
spending money on these prescriptions which I don't have, and now I can't get one refilled. For a short time there,
I just felt helpless.
So I went home, read a comic book, and ate some jelly beans. All is fine now.
Might be making some progress. Driving the kids home, my daughter says, Dad, you are laughing too much.
My son replied, So, you don't think that is bad do you? Maybe something is showing and
maybe it will be contagious.
Been working on (1) a sports survey my daughter will use to get a Girl Scout badge and (2) campaign
slogan handouts that will be attached to candy bars she will use to 'buy' votes. She is running for
class secretary. (Watch out Al Gore. My daughter knows how to get elected.)
Made soup out of the left over hamburger log. It was a bigger hit.
I talked with an old friend today. Got news I didn't want to hear. Some how I expected it. It is really strange
how emotion affect MS and me. I got really really tired and had to crash early.
Oh well, my homepage was not a hit with my wife. In fact, nothing was said about it.
Got creative with dinner, give a limited selection of eatables. Made an 18 inch hamburger log with a Marian
canel right down the middle stuffed with low fat cheese. This 'log' as accented with potato quarters and whole
corn. On the side were green pees with onion. Yum, Yum. Response was that the meal had only starch.
Today has been a good day, so far. I went to see the wizard this morning and 'think' I have identified at least
one important solution (for me). I WILL put it into action and do my best to make it work. I always believed
that the 'simple' is always the best. Now I will get to see if that is true.
So, LAUGH, GB, laugh.