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Since you asked.


DeanCarl

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A few folks asked how I was doing so here's a quick update.

Not a lot has changed in the last 3 weeks. At that time I experienced a BIG drop in my energy level and a corosponding increase in my muscle weakness. I also had an increase in muscle and joint pain and also began to experience some deep "bone" pain just below the left knee. To top all that off my appatite (sp?) decided to take a summer vacation.

The result of all that is that I spend a lot more time on the ol' couch now. I used to get out and about on my scooter just about every day, but now it's down to once a week or so (some of that has to do with the weather ... it's over 90 every day now (typical weather for were I live), which does my breathing no good what so ever). The pain is managed pretty well with vicoden, though I do have to take a small dose (.25ml) of liguid morpine every once in awhile.

The biggest complaint I have is that every afternoon around 4 or 5pm I go into a period of extreme exahstion. It lasts untill 9 or 10pm then lets up. I've tried a numbe of different things to ease the feeling (naps, eating, not eating, more meds, less meds, etc.) but nothing seems to work very well.

My hospice nurse and I did some "calorie counting" the last visit and figured out I wasn't taking in near as much calories as I should so I'm back on the weight gainer 2200 now and that seems to help a bit.

What I have learned though all this is that there are a LOT of things I still can do even if I'm stuck inside and glued to the couch. Fay A. sent me a couple of Smithsonian and National Geographic magazines and I liked them so much we got a subscription to the Smithsonian. My living room window faces our tiny little yard and we are still getting some blooms from some of the flowers and it's fun to watch the humming birds try to decide if they want the "natural" necter or the stuff in the feeder. And to watch them get into fights over who gets the best blooms! :)

I've also found a couple of TV shows I actually like :shock:. NYPD blue is in syndication on TNT and so is law and order. CSI: is another show I like to watch.

And, of course, there is this board. Comming here and walking this walk with all of you is a BIG part of my day.

All that has happened over the last few weeks was not unexpected. I knew there would come a time when I wasn't able to do a lot of the things I used to do. But the goal remains the same ... to live my life the best I can each day. I don't worry too much about what I can no longer do, I'm too busy trying to find ways to enjoy my life as it is today. And, surpizingly enough, I've found many, MANY different ways to do that. It's hard to get "down" when your watching two cats (who claim they don't like each other :)) wrestle in the middle of the living room floor and then chase each other around the appartment. It's hard to get "down" knowing there are a lot of folks out there who care about how I"m doing each day. It's hard to get "down" when I live with the most wonderful lady in the world.

Thursday will be my 54th birthday. When I was dx'd nobody was sure I'd be around to celebrate. But I'm still here and still chuggin' along!

Dean

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Dean, first of all, Happy Birthday! I know Lucie enjoyed her birthday and our anniversary much more this year because she wasn't supposed to be around to see them. When you are watching NYPD Blue, Law and Order and CSI, Lucie is probably watching them, too. Those are her favorites.

I'm glad you have found many things to do and celebrate. Lucie is doing that, too. I have to differ with you on one thing -- the most wonderful lady in the world is Lucie!

Good to hear from you. I see your posts and know that you are there. Thanks for the update. Don

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Don,

You always have such a wonderful attitude no matter what is happening with you. I am so glad that you can see the simple things and cherish them still. We all need a leasson on that!! I wish you less pain, more days outside and riding around, less fatigue and many more pleasures!! Your wife must admire you so much because I know we all do!! My very best to you Dean always.

God Bless You,

Jane

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Dean,

Your attitude is a blessing. You are a glass half full person, my kind of guy.

We had become obsessive, compulsive about all 3 Law and Orders for awhile. I don't know why, but the Duke has now become addicted to the Food Network.

Stay the course dear friend.

Love,

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"What I have learned though all this is that there are a LOT of things I still can do even if I'm stuck inside and glued to the couch."

One of the things I've learned is that a lot of people who aren't ill haven't figured out how to live as well as you do, Dean.

You are a shining example of making a "new" life for yourself. I salute you, Birthday Boy! :)

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Dean,

Sorry to hear your not getting around as well as before, but am SOOO glad to hear that you are your old self...making the best of everything. I wish I had more of you in me... Im always felling sorry for "poor ol' me"

Jamie

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Happy Birthday Dean,

I was so glad to see your post and to know that your beautiful attitude toward life has not changed. You are my hero. The things you post about and your wonderful outlook have taught me alot about life. I try to find the good things in all that I do now...(I have trouble sometimes) but I try. Take care of yourself . I hope the pain does not get worse and that your calorie increase will help with the fatigue.

Nina

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Happy Birthday, DeanCarl from the Hall Clan (TBone)!

Our Mama used to hang 10 h'bird feeders each summer and boy was that a show! We often estimated upwards of 60 birds as all ports would be in use and there was lots of activity in the air. She would sit out in a lawn chair late in the afternoon and spray the water hose up into the air so the birds could cool off. You wouldn't believe the spectacle they put on. Perhaps you could try that in your weak time. She had also put a roll of wire near the feeders so that they would have a good place to land. Their little feet just fit around the small wire. Mama had had knee surgery so this was great therapy for her. It worked the rest of us quite silly as those little buggers were eating 10 lbs of sugar each week. We used 1 c sugar to 4 c water and filled those feeders every morning, mid-morning and night. We were real glad when Mama decided that 10 feeders may be a bit too many.....

Take care and have a "flighty" birthday.

Fran

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Guest bean_si (Not Active)

Happy Birthday Dean! I always enjoy your posts.

I discovered TV when I got sick - never watched it before. In fact, my TV is a mere 9 inches!! I love Law and Order, Third Watch, Joan of Arcadia, Touched by an Angel and Charmed. Those are the only ones I like so I sometimes find myself watching (drum roll)..............The Food Channel!!!! Watching the food channel for crine out loud! :oops::roll:

Cat

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HAPPY BIRTHDAY!

I'm glad to hear you've found things you like to do. Me, I can be lulled with the Home and Garden network. For some reason those decorating

shows keep my interest. I figure if I got a TV guide, I might actually change the channels....

We recently added a cat to our two (our son's, which I found peering up at me with big green eyes, in my flower/weed bed when I lived on the rez), which has upset the balance around here--more cats than humans and one cat more in the neighborhood and in the house has caused a few turf wars, some of which are hilarious to watch.

As for birdfeeders: somehow luring birds into yards with cats doesn't seem fair.

The other morning, I heard the birds crying loudly in mourning and distress: yep, our little guy, Cody, who has until now been an indoor fellow, caught himself a bird.

Cody is a Maine Coon. I didn't know there was such a breed, so when I saw him, I thought it was God's joke of a cat: that the little guy had been pieced together in heavan from spare cat parts. If you aren't aware of what they look like, look them up on the Internet. Ours is a little more scraggly than the show cats, you'll find, but you can get a picture.

What was what looks to be a pure bred Maine Coone doing on a South Dakota reservation, I'll never know, but he is a cat full of shennanigans. Always a pleasure, but the other cats get tired of his games quite readily. But he plays on..... God love him.

elaine

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So verrrrrrrry good to get a report on you! Sounds like you're doing as usual and living life to the fullest!!! I have always admired your attitude and so wish there were more people around that think like you do! I thoroughly understand how entertaining watching those two cats can be! Double that number to 4 and imagine what my house is like! There was an article in our newspaper today about a lady that has 53 cats in her house. I'm taking this opportunity to send HAPPY BIRTHDAY wishes your way and hoping you'll feel up to taking a scooter ride and celebrating at that favorite buffet restaurant that you and Gay enjoy so much!!!!!

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