Talk to Me

I have, since starting this blog, tried to stay positive in it's content and approach, but there is something that keeps bugging me that I want to address.  I have thought about this for several weeks and with several appointments with new doctors and clinics looming on the horizon, I think it time to say something.

There is a great pool of knowledge out there among health care providers, from LPN's through the most knowledgeable doctors.  They know of what they speak for the most part and only a few forget from time to time that we patients may not know how to understand what they are saying.  At that point it is up to us to tell them to slow down, take a breath, and translate what they are saying into something that we can understand.  But this is not what I am concerned about.

There are those that want to tell us what we are feeling or going through, even though that might not be happening with us at all or we have skipped over certain things in the "normal" coarse of a disease.  For example, I did not go through the five stages of grief associated with learning that I have an incurable disease in ALS and will certainly die of it in the oh so near future (relatively speaking when the the average life expectancy is 78.84 years according to some studies and I am now only just shy of 58).  I am not talking about that either.

There are those professionals who, learning that I can no longer speak, want to do as many "civilians" do and slow down their speech and treat me as a grade schooler in dumbing down what they say, or as I had one nurse practitioner do to me recently, lean in and make sure she had eye contact with me every time she said anything as if I was relying on lip reading to understand what she said.  Needless to say I was not impressed.  However, I am not even talking about that.

What I have a great deal of trouble with are professionals not talking to me.

I am a fairly intelligent individual, having graduated college in a total of eight semesters with a dual major many years ago when a college degree still meant something beyond a stepping stone to a higher, post-graduate, degree.  I was even able to learn how to fly a helicopter in the Army.  But for some reason doctors, nurses and others all want to address whom ever I am with instead of talking to me.  They ask me how I am feeling and then take the answer from my wife or daughters instead of having patience enough to let me answer for myself.  If that is not enough they then tell my escorts what is going to happen with my treatment instead of talking to me.

Yes, they can and should know what is going on with me and what my treatment is going to entail from that visit to the next, but I am the patient.  Only I know for sure what is going on with my body and how I actually feel.  Only I can tell you if a course of treatment is going to mesh with what I can do and want to continue doing or not.  Relatives want only to protect us as much as they can and have our best interests at heart. I realize this. But even they do not know what the patient really is thinking or can really do on a daily basis.

There I've said it!  I have ranted and raved all that I need to.  I am sorry that you, the reader, have to see this side but I needed to say it.


Until next time.............................

I Have Become Like My Dad

I thought of my Dad this morning.

That, in and of itself, is not unusual for I think of both of my parents every day and often every day.  What got me this morning is that while dressing to go to Wal Mart to pick yet more drugs, I was dressing in layers for a fairly mild winter's day.  By mild I mean temps in the mid-30's, not like on Monday with the bitter cold of lower 20's.

I have always been cold natured, preferring hot weather to winter's cold.  My philosophy has always been that in hot weather you can take off clothes and find a nice cool creek to cool off in, but in winter there are only so many clothes you can put on before you become a hazard to yourself.  For example, when you were a kid, and it snowed, and your mother put so many layers of clothes on you that if you fell, it was impossible to get up again without help.  See what I mean?

Dad towards the end of his life would bundle up with layers of clothes in his room at the nursing home.  Long johns, tops and bottoms, outer clothes and then maybe an insulated shirt over that.  I never could understand why he would do that.  Even on that last Father's Day picnic in 2006 he was dressed similar to that.  As I remember it was a gloriously bright and warm day, and yet he was bundled up and stayed in the sunshine as much as possible, while the rest of us were comfortable in shirt sleeves.

Despite being chilled, and staying in the sunshine as much as he could, he still seemed cold.  He did enjoy being there I think.  Surrounded by children, grand-children, and great-grand-children, all gathered to enjoy a picnic and honor the man who had started it all, as they say.  He grinned and laughed and played with the kids, teasing them to get a reaction from them.  Usually it was a smile.

Today though, I found myself bundling up much as he did on that last Father's Day.  Thermal knit top, shirt over that, and a coat over all.  With all of that I was still chilled and my hands stayed cold, much as they do now a days.  I did enjoy getting out, even if it was for more meds.

It did occur to me as I dressed that I had become like my Dad.  Considering the kind of man he was, I could do worse, much worse, than that.

Thanks Dad.



Until next time..................................

One Year and Counting

One year ago we were in a state of anxiety, waiting for all my tests to be done and for the results to come back.  I knew already that the results would not be good.  We just had to go to one more appointment which would come on the 26th.  On the 27th my neurologist gave me the long face.  In that year I have gone from being able to speak and be understood, to not being able to speak at all.  I have lost a whole person in weight, from 215 lbs to about 140.  But...........

Since then it has been an amazing year!  Wait!  What?!  Nope not a typo.  It has been an amazing year for me.  I have learned so much about myself and others over the last 360 some days, and I have met some really beautiful people.

For instance, Laura Blume from ALS in Wonderland, who from a great personal tragedy has made something totally amazing.  She has taken her time to actually come and visit with us and to encourage us.  She and her mother are truly Angels among us.

Clyde Reed of Paralyzed Veterans of America.  He cut through so much red tape that surely his light saber came close to over heating.  In less than a month he had my VA disability and worked very closely with us on any number of problems and blips along the way.

The great folks at UAMS ALS/MDA clinic.  Those ladies all rock and the staff so caring and gentle it is unbelievable!

During this year I have learned that the depth of feeling for loved ones is bottomless.

Friends are as precious as any gold, silver, or any valuable gem that has ever been.

I have gone places and reconnected/connected with relatives and unrelated family that I never knew I had.  You know the people who some how find their way into your heart and if they ever leave, a hole will open up that never actually heals.  Thank you Matt, Meghan, and Beau Briggs, our lives are unmeasurably richer because we found you guys!

Yes, it has been a hell of a year in many many ways.  Despite it all, I am richer today than I was a year ago and have so much more to be grateful for.


Until next time................

The Moving Saga

Back online!  Finally!

The moving saga is just about done and thank goodness for that.

The first few days it was like a box blizzard had hit the house and had not let up for a few days.  We had paths running through each room and not much more to walk around the house.  We had no stove, no refrigerator, and some other electrical and pluming problems, but things have been worked on purchased and rectified.

As far as the stove and refrigerator they are new.  It is a challenge to keep the flat top stove clean and to get used to cooking on something that does not have traditional burners.  It is very nice to have something that I know was not used and abused before we had a chance to use it.  Thanks to our landlord we have that chance.

We didn't have a dryer to work because the circuit breaker was fried and then when replaced the dryer outlet blew up.  Both were replaced and now it functions well. Friday night after doing the dishes, the sink refused to drain.  Drano did not help and it was Monday before some one could come out and rotor rooter the drains.  Now the drains run free and clear!  Yea us!

In the meantime, the dryer did not survive unscathed though. The timer setting knob doesn't function anymore.  We got to figuring up on the age of the dryer and decided it might be time for a new one after 17 years of service.  If we replaced the dryer we might as well replace the washer as well.  There goes eating for the rest of the month!  Found a pretty good deal at Sears and we will have one of each coming on Monday.  Joy to us and new appliances.  And yes we are on the appliance salesman's Christmas card list for next Christmas.  Should be well invested in appliance company stocks as well.

Now many of you know my sense of humor, but I assure you, all of the above is true.  If you would like to stop by and see us to verify the story feel free.  We would love the company and G will be able to show off her new stuff, some of which we will actually get to keep.

The porch light is on and the door latch string is out so feel free to stop by.


Until next time.............................