Chronic Progressive Illness, Not Always as It Appears
 

Since many of you have an apparent sincere concern and interest in my circumstances, I have decided to share some specifics with you. This will give you real insight into what I am really dealing with on a daily basis versus what people may believe by only reading my FB posts.

My situation is progressing with the neurological damage affecting my urinary tract, bladder function - or lack there of - prostate problems and GI tract. This is leading to a new set of challenges which are difficult to treat, because the bladder is not emptying properly due to the enlarged prostate and the entire GI tract has slowed tremendously leading to bad side effects.

Daily functions are more difficult with taking a shower and shaving the only item scheduled for an entire day, because of the effort expended, severe exhaustion and muscle soreness. Cognitive functions are slowing leading to short attention spans, repeating things said at different times of the day, lack of focus and frustrating short term memory loss. After being up all night my wife will ask me what I did and I have no memory of what I actually did at all. Heck! I don't even know when I got up, how long I'd been up, when I went back to bed, where I went back to bed - guest room, bed room or recliner - no memory just a blank.

And finally, the sleep disturbances have moved into a phase where I may be in bed 16 hours out of 24 due to exhaustion and pain, sleeping most of that time. These "waves" of severe debilitating exhaustion may hit at any time for no apparent reason. My doctor's have reached the point of frustration, because they have no way to fight the progression of the brain and neurological diseases. It's apparent, looking into their faces during an appointment the frustration and empathy they are experiencing. It has become apparent they hate to say out loud that the disease is progressing. Almost like if they don't say it out loud it really isn't or won't happen.

I apologize for rambling, which is simply another result of the disease and the near fatal brain stem stroke from back in 2008. Your sincere concern, interest and constant support is greatly appreciated.

Thank you for allowing me to freely share my circumstances without a concern of recrimination. I realize on these forums, if the readers don't fully understand, they do appreciate the challenges of each person's circumstances.

Not a damn thing anyone can do, but do you feel us all wrapped up tight around you? Yes, you are alone in this journey but we're all here for you as much as that can be.

What Kicker said, Craig and more.:circlelove:

Oh, and.... Happy Belated Birthday:sing:. And may God grant you many more healthier, pain free and peaceful years.

Re" heart thoughts
 

Dear neuro, I am so sorry that life has been such trauma for you. My heart goes out to you. I wish there was some magic thing I could say to ease your heart and soul. When I hear posts such as yours, it makes me realize how much we need each other when life presents such hardship and pain. There are so many of us with severe challenges, that I often cannot come up with the words to help a person. I care about you and I wish things would get better for you. Please keep coming back to this site. I will listen and respond. There is compassion here, and group of loving human beings, who will be there for you. You are in my thoughts and prayers this very minute, even though I can't come up with the words to help. I hope you find some peace in your life. ginnie:hug::hug::hug:

Yup. I'm here, too. It doesn't really help, but we care from afar.:grouphug:

Craig,
You know from my many posts on your FB posts how I feel about you...I ache knowing that your disease is progressing...I wish I could wave a wand and make you all better.
Know that you have had an important voice, and continue to instill your wisdom in us...we love you and value your place in our corner of the universe:grouphug:

:hug: Craig :hug: Like many of the others have expressed I wish there was more I could do than just tell you how much I care. You're such an important part of our community here. Thank you for always openly sharing your story with us. I know I'm not the only one who has benefited from your posts. :hug:

:hug: I'm so sorry for what you go through on a daily basis. I so wish there was something that could be done to ease your pain and difficulties. Know that we are all here for you whenever you need us. We care and are hear to listen. Thank you for sharing with us. :grouphug:

I greatly appreciate all of the warm comments of support and believe me, simply reading your comments indicating you empathize and relate to my situation means a great deal to me.

However, I must admit to you while reviewing these recent posts my sick sense of humor kicked in even though I don't feel particularly funny right now. Allow me to share my off-the-wall comments, if I may.

kicker: "but do you feel us all wrapped up tight around you?" Yes I definitely do and honestly? Someone needs a shower! :eek:

Debbie D: "I wish I could wave a wand and make you all better." Obviously Debbie, you've not taken the right class at Hogwarts yet or you would be able to, right? :rolleyes:

I realize none of this is really funny, but I have to do something to maintain my sanity on this early Saturday morning.

When I met with my doctor on Tuesday, we discussed him calling my wife to discuss additional options after updating her on his evaluation and thoughts. I know he is extremely busy and has yet to call her. I am not concerned one way or the other, because he either will or won't have the time to do so. I will share with you - I've not said anything to my wife about this yet - due to my shortness of breath and apparent low pulse-ox, he would like me to go on oxygen at home. The only thing I can think is my lungs and diaphragm are now becoming involved and unable to function with the least amount of exertion on my part. I was very upset at hearing this suggestion and simply told him to talk to my wife. Personally, I am not ready to accept a set-back like that right now. It is what it is. We will see.

There you go, way more information than you expected........AGAIN! Tomorrow is another day and countless new and additional challenges. All to be dealt with in a timely manner with the respect they are each due. Thank you all, again, for listening.

Well, Craig, I think it's funny! :D As you already well know those in police work do tend to have a "different" sense of humor and my son is right there with the best of them! Took me a while to get used to that but I now realize that it's a coping mechanism and not insensitivity on their part. Plus, some of the stuff he comes up with is pretty funny. We all have to cope with the stressors in our lives the best way we can while maintaining our sanity. Sometimes.......all you can do is laugh.