DeanCarl Posted July 25, 2004 Share Posted July 25, 2004 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 . 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 Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.