Dealing with the VA ... Again.

[DeanCarl]

Here we go again ... and again ... and again. The good ol' Vetran's Administration Medical Center is at it one more time. Here's the deal:

As most of you know I have chosen to not activily treat my cancer. I, and my family and friends, are quite comfortable with that decision and have been working toward enjoying this life for as long as I have left. As I am very weak physicaly and have NO stamina it takes a bit of planning to do the most simple things like going out to lunch. I have enough energy to be running around for only a couple of hours each day so I have to make sure there is nothing else we have to do before we try to go out to eat (one of our favorite things to do). Yesterday we FINALY were able to free up a whole day and were gettng ready to head out to the Home Town Buffet when the phone rings. It's one of those automated "reminders" the VA has for appointments telling me in that oh so personable voice (he says sarcasticaly) that I have an appointment at noon on Monday. What?! Neither my hospice nurse or my doctor told me anything about an appointment. The automated reminder doesn't tell you what the appointment is for or where you're supposed to go except that it's at the VA center in La Jolla which is 35 miles away. So now I have to call THEM and find out what the heck is going on. I had gone in about 3 weeks ago to be evaluated for a mobility device (i.e. scooter) so I'm getting all excited that maybe it got approved and that's what the appointment is all about.

Not flippin' likely! After a half hour on hold to the scheduling department (and believe me .. that's a ShORT wait for those folks!) I find out the appointment is for the home oxygen clinic . Huh? So I get the extention to the home oxygen clinic and, of course, get an answering machine. I leave a message and head off to lunch (finally). We get back and no message on our machine so I call again and ... you guessed it ... have to leave another message.

About 2 hours later someone finally calls. Turns out I'm supposed to go and get evaluated for home oxygen. I patiently explain to the lady that I'm ALREADY ON HOME OXYGEN that was ordered by my hospice nurse through my doctor. My VA doctor. Does this matter? It does not. I still have to make a 70 mile round trip and walk quite a ways to get evaluated by some clinic to ok something the two people closest to my situation (hospice and my doctor) have decided I need! That means I'll be recovering from all that for at least 2 days after.

My original understanding of hospice care was that they would act as an intermediary between me and the VA. By having a nurse come out every week we would avoid situations just like this, where I would have to go all that way and back each time I needed something for my care. But the VA doesn't seem to see it that way.

Now, my goal in life right now it to stay as active and involved with life as I can for as long as I can. This involves, for me, doing all that I can to increase my energy and stamina (i.e. the oxygen) and doing all I can to conserve my energy and stamina (i.e. the mobility device and NOT using up what energy I do have running back and forth to the VA).

The VA's goal for me, on the other hand, seems to be to make life as difficult and as complicated as they possibly can. I get the feeling they wish, since my disease is concidered "terminal" that I'd just hide in my home up here in Alpine and not bother them.

It's frustrating. I don't have a lot of energy to begin with and I have to use most of it to get those jokers to do what they should do in the first place. I end up waisting so much time that I want to be spending on enjoying, as much as I can, what could possibly be my last year on this ol' blue marble we're all floating around on.

And then I get depressed about the whole thing. Not about my illness or even about dieing but about what I see as a complete lack of caring from folks who are getting paid to care!

Oh yea, about the scooter? Nothing, notta .. zip. Three weeks and not word one. No "yes". No "no". Dead silence.

I have a call in to my hospice nurse to see if she knows anything (she was supposed to check on it this week). If not than I start, once again, going "up the chain" until I get something done. I think this time I'm going to skip a few steps and pull out the "big guns" right away with a letter/call/e-mail to my congresman. He's a Viet Nam vet with a big rep for helping other veterans out. We'll see.

Dean

[shelliemacs]

Dean,

not that my two cents matters one way or the other. But I find it appauling that for someone who has served out country and put his life on the line without making Uncle Sam leave you a message about when or where to defend his shores would have to endure such disgraceful treatment by said Uncle Sam doctors and nurses.

my husband is himself a Gulf War Veteran ( the first one) and contracted a blood disorder over there which after the first 6 months of returning home decided against ever going back to the VA hospital for treatment. He instead opts to go to our GP and pay for the medical care he needs.

Seems to me Uncle sam doesn't care about his men after they are out of his debt and have done their time.

if I could wave a magic wand and make them go away for you I would. the cancer too. but alas, I am still waiting on my fathers test results too see if I am back in the parent-cancer boat again.

a fan of yours forever

[lilyjohn]

Dean

You keep mentioning the VA. I understand that they are in charge of your care. I have to ask are you on Social Security and Medicare? I know from working in the assisted living home that medicare can help with the scooter. I saw one lady get one for very little money out of her pocket. I also know from my experience with Johnny that medicare pays for home oxygen. Medicaid or Medical should also pick up some of your expenses. Those are a few things that you should question that congressman about.

I will tell you also that we had several people on hospice. Nothing was done for them without going through hospice. They handled medication and made the decision when a person needed hospital care. They also provided oxygen and many medications. There are many things available to help you. I know this has got to be stressful and zapping your energy. Try to get that congressman to look into these things for you. You definately need an advocate so you can relax and enjoy your life.

You are an inspiration to so many of us. I hope to see you around here for a very long time. Who knows you might still be the one who teaches people how important attitude is! God Bless you and I hope that you find the help and peace that you not only need but deserve.

Lillian

[DeanCarl]

Lillian: No Social Security or Medical yet. It's "in the works". SSI turned my down, but SSDI hasn't got back to me yet. SSI said I was getting too much from my STATE disability and said I'd have to give that up first. Now, I'm no rocket scientist, but SDI (State) is over a thousand dollars a month and SSI is just under 800. Hmmm..... I'm gonna give up eleven hundred to get eight? I don't think so!

So, for now at least, the VA is "it" for me.

Shelly: Thanks. I wish that magic wand existed also.

Dean

[shirleyb]

Dean,

I am sorry you are having so many problems with the VA. My brother has gone through the same crap for injuries he received in Vietnam.

I am a vet also and I refuse to use the VA. They responded to me about 4 months after Randy died that they needed more info on his disablility. This was after I notified them that Randy had passed and to please discontinue his application. It is all BS to me.

So I guess what I am getting at is, why wait? Contact your congressman and get those email going. I wouldn't wait for the VA to respond.

I hope you had a good time at lunch.

Keep us posted.

You are in my thoughts and prayers alot.

Much love,

Shirley

[lilyjohn]

God Dean the whole damn system sucks!!!!!!!! I really hope your congressman can get things moving. Sometimes just one person in a position of power is all that it takes.

Years ago my brother had a masive heart attack. The doctors were surprised that he lived through it but he did. Trying to get his social security was an unending nightmare. They kept telling him that he could find work in his condition. The fact that he was so sick and that he was not able to read or write were never considered. He made one call to his congressman and what do you know suddenly he qualified! You just never know until you try.

When Johnny died I vowed to work to change this lousy system that we have to depend on. Seeing what you are going through strengthens my resolve. I can't help but wonder if that is not why we are all here now on this board supporting and sharing. Everything has to start one step at a time. I hope that all of us together can make so much noise that sooner or later someone will listen and begin to make the changes so important to all of us. Hang in there and give em hell. You know we are all pulling for you. Lillian

[norme]

Dean, Lillian just said what I was going to tell you. Get in touch with your local congressional office and let them help you with the scooter and Social Security. Not sure they can do much about the oxygen though.

[Remembering Dave]

Dean I echo everybody else on the congressman. When we adopted our baby girl we had to deal with the nincompoops at the local SSI office to get her Social Security Card. Finally we got fed up with thier incompetance and we called our congressperson (woman) and had her SS # within the week. Call your congressman and ask for help, thats what they are there for and from what I have experienced and heard they can do a pretty good job of getting things done.

David C