DW - I feel your anger
IT IS SO NOT FAIR!
I hate the medical "industry"
All of us get caught in the web of being told "here is how to do things"
and we believe them
in the case of your husband, he believed the A1c tests
we all do to some extent
Maybe its because we need to believe in something
there is so little we, as the spouse, can do -- we allow ourselves to be pacified
well, at least the A1c is ok
Its not what I experience, but if the doctors say its good, well then maybe its ok
If we don't do that, maybe we will always be in a state of frantic worry
Your words of advice are valuable to me
But does anyone really think I can get Tom to test his glucose 8 times a day, much less at night?
Yeah, he has a monitor that is supposed to test it constantly
but first of all, that assumes it works properly all the time -- NOT!
secondly, someone has to look at the individual results, not just the average
Guess what, that doesn't happen either
I have tried to preach what you are saying for years,
that the average is not good enough, the highs and lows are the problem
this is just a common sense idea to me -- do we really have to prove it?
Too bad for me, I'm wrong, how can I -- just his wife -- argue with the doctors!
So, those of us in the trenches with no medical background understand common sense
but until some male scientist proves it, well we are just talking to the wind
at least that's my bitter attitude speaking.
Good Luck, DW
I'm right there beside you.
Tom's Wife
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My husband is a type 2 who was diagnosed about 10 years ago. he is starting insulin tomorrow. He is terrified. he suffers from gastroparesis and is in constant stomach pain. his quality of life has deteriorated greatly in the past year.
ReplyDeleteI have all the burden and all the responcibility. I do all the work. I go to all the doctors' appointments.
His father, a physiian was also insulin dependent. He is terrified of kidney failure and heart disease. He has PTSD and long term depression.
He is unable to work and I have to support not only him but also a mother who is gobbling up huge sums of family assets in an assisted living facility.
He is overweight and does not excercise due to the pain in his stomach. He is very irretable and yells and screams.
We live in a condo that I never wanted and hate with new rules that are making my life miserable. I regret ever selling our single family house. This place is way too small to live in with someone who is chronically ill. I have no place to escape. We also brought along our 15 year old large dog who is way too old and too big to be living with us here.
We can only due to new condo rules,we can now keep only one car here so that the logistics of getting the other car make it easier for me to stay home at night.
He is so clingy that he is smothering me. he is talking about not living until 2011 because of the illness and keeps saying he will die of a heart attack. He is afraid to be left home alone. We own the business so that he sits there with me all day but rarely does any work. he sleeps off and on during the day and is up every 3 hours on a good night.
Does insulin help any of this? he sees multiple docs at a renouned diabetes center ande they refuse to answer this question bouncing us from specialist to specialist.
I am more fortunate that he wants me involved in all the doctor and diabetes nurse visits but when I called for info on his eye test results, I hit the no info wall. Outrageous that we care for them but the medical establishment refuses to recognize our contributions and provide us info.
Toms wife. I know you can't possibly get him to test! I was really speaking right to diabetics with that post. No one can get them to test. And I think they are the ones who get way too confident with their "good" A1c reports and don't begin to comprehend highs/lows that average out to "good". My hubby has not had his test strip rx renewed since 2001. He got himself to this point. I'm just hoping at least 1 other diabetic will read what I write and realize the need to test 8+ times a day before they let them get to a similar place. I know you truly understand and I hear your frustration.
ReplyDeleteI think my own frustrations have taken a turn. When you get to where we are, you walk into "survival" mode. Everything is 100% focused towards getting him past surgery and on to the next phase. My anger at his non-testing, non-self-care is moot. He is looking at life saving surgery and keeping him from having a heart attack between now and then is the number 1 focus for both of us. Truly a "wake-up" call I wasn't prepared for!