I intend to make this as to the point as possible as I am still absolutely so lividly "pissed", yes you read it "pissed", that I can barely get my thoughts organized!!
After sitting by and watching helplessly, I finally demanded a "Care Conference" regarding my hubby, Max, about a month ago!! Well, THE day arrived on Wednesday of this past week!!
It is a LONG story, but most know the horrific Hell that we have been living in since Max was first diagnosed August 15, 2005!! The only thing I can say is thank God our community's medical people were wrong again and Max has far outlived the six months he was given!!
We have been put through a daily living Hell and been through all the hoops and government red tape you could ever imagine!!
I was not getting any where at this Care Conference, however, most points brought up were completely wrong or had no validity whatsoever and thankfully I had asked Eunice to be with us and to feel free to speak up whenever the urge hit her!! Eunice finally had her "fill" of the BS we were dealing with and asked, then somewhat demanded, to know just where Max was on the National Donor Transplant List and just what the Iowa City, Iowa VA Hospital was doing for him!!
ABSOLUTELY NOTHING!! NOTHING WHATSOEVER!!
Eunice "pressed" a lady psychiatrist that Max has had to see as part of "the process" monthly forever it seems!! Eunice demanded to know just where Max was in the miles of red tape we have conquered, or so we thought!! After much hemming and hawing, this woman finally said, "Well, quite honestly, Iowa City is simply not considering Max for either the kidney he so urgently needs or the liver"!!
Why after these years of jumping through hoops and being at Iowa City VA's beckon call!! Because I AM DISABLED AND IN A WHEELCHAIR!! Yes, Max is to suffer because I am disabled!!
Well who was going to oversee Max's care after the transplant surgery?
Who was going to the pharmacy and obtain his necessary prescription medications and who was going to dispense them daily to him. Who was going to see that he ate properly, got adequate exercise and rest, and was cared for at times when he could not care for him self???!!!
Well, the simple answer to these questions is the same damn person who has been doing it for the last thirty plus years!!!
ME!! ME!! ME!! ME!! ME!! ME!! ME!! ME!! ME!! ME!! ME!! and ME!!
Can any one direct me to the best discrimination law firm in the entire United States? Can any one write their Senators and Representatives in Max and my behalf?
As you may easily see, I am yet beyond discussing this situation without the worst anger I have ever had emerging from every fiber of me!! And, as an added bonus the VA is sending in yet another siege of "Visiting Nurses", "Social Workers" and "Physical Therapists"!! I got to the point of threatening the last "Nurse" with my friend, "Betsy Winchester", and I will gladly do it again!! I can still remember my own Physical Therapist tightening his grip on me and whispering, "they will cuff you and take you to jail"!! As I told him then, I do not care as it will give me publicity to this atrocity they refer to as Iowa VA system!! Well, I truly would never do harm to any other individual as has been done to Max and my self!!
For the record, I have climbed ladders and I have crawled down an entire flight of stairs on my belly to get what I needed done and I will do what ever it takes to keep my little family of three's best welfare and safety as my only purpose in this life together!! I am dealing with the loss of use of my legs, not my brain and fortitude to take care of this family. I will do what ever is needed to take care of the three of us!! I have set my self back many times in getting things done that needed to be when I had no other options!! I have taught my self how to get things done, albeit perhaps quite "unconventionally", but all the while done!! And, thus far, I have been fortunate to hire extra outside help when the need has presented it self!! We have never went without any thing we needed or for that matter wanted!!
I can not believe that there is some one who does not have any idea of who I am or what I am made of has the power to possess a rubber stamp that denies my husband the right to his life!!
PRAY you never need to rely on any Veteran's rights and benefits in Iowa City, Iowa!!
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7 comments:
All I can say is WOW! I hope you can make them see the light!
Heidi-ILCS
Well that just sucks doesn't it. Don't see how your abilities or disabilities should effect whether Max gets a transplant at all. You get on the list when your name is at the top and they get a match you go in for transplant, nothing else should matter. Have been hearing more and more about the VA letting people down and not providing adequate care. Can;t help you except to pray that it will somehow work out.
I am so very sorry for all you and your family has had to endure. It just breaks my heart. I will continue to keep each of you in my prayers and hope something soon can be resolved for you. Hugs to each of you.
It is hard to believe that they can discriminate against you that way and get away with it. And why put you through all the visits and tests and whatever, if they were not being serious about it?'I don't 'get' the bureaucratic mind set.
WHY? HOW?
HUNDREDS of THOUSANDS of dollars, the almighty green bucks!!
AND, involuntary experimentation!!
AND, all for the mere price of my husband's life!!
Not enough he gave up his right to father children due to "Agent Orange" exposure and ensuing prostrate cancer!!
Now, they want a "Support Person" for the "Support Person" being ME!!
Once brought out and verbally said this was required Eunice had only one thing more to say and that was show her the dotted signature line!! Now, because she happens to be black are they going to say she is also unqualified to fetch pharmacy needs and read instructions on these bottles!!
I fully am going to all ends to try and file a Discrimination Litigation against the U.S. Government, specifically the Veterans Administration!!
Deborah
Oh Deborah, I'm so sorry this has happened to you guys. It's just terrible news, and I can understand why you're so livid.
Deborah, take a deep breath and find the best way to direct your anger. Write letters of complaint. Get everyone name and the state agency that liciences them, the board the runs the hospital, the nursing supervisor, the director operations for the hospital. Find out who is the most pro-active advocate /public officials and cc them on every single letter. Call the state department of aging, find out who in your area is the best political person to get involved and cc them too. Keep copies of every letter and put a packet together for your local newspaper. Write our president and the woman who overseas VA issues. Get your local America Legion Post in on the action. By having the start a petition to get better services for the Vets.
Sending hugs & a little piss and ginger to get your anger directed to the right people.
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