Wednesday, November 18, 2009

Waiting, waiting, waiting at the Miami VA

Well, I might as well write some here on my blog. Haven't been on in quite some time but i have had lots of encouragement to continue and some of my offline writings are ready for publication.
Here i sit at the Miami VA waiting for another prescription. I had an appointment with the dentist at 10:00am, now it is almost 3pm and i am still waiting.
After my dentist appointment, i had to see the Red team nurse to check my blood pressure. It was high. I hate dentists. Then i had to see the Red team pharmacist to get my pain medicine renewed and talk about my blood pressure. My blood pressure was in good control until i moved to Miami and they started tinkering with my blood pressure medications. Of course, being on prednisone doesnt help hypertension.
So, after i was done with the Red Team, i got in line to hand in my prescription to another pharmacist. Yes , i had to go from the Team Pharmacist to see another pharmacist to verify what i was picking up today. Well, that took a good 30 minutes. Meanwhile, the line for travel pay was down the hall and through the pharmacy waiting area. There are only 2 cashiers for this big hospital.
Before you get your travel pay, you have to stand in line to see a travel pay agent who verifies that you had an appointment and are due travel pay. Out of every travel pay, they deduct 6.00 for something, who knows what. That line was taking forever because one vet was arguing he did not require a deductible to be withdrawn anymore. Meanwhile, there are about 4 employees standing around and talking, another employee filing her nails, and a couple more watching the one employee deal with the angry vet. In the meantime, the line to see a travel pay agent is just getting longer and snaking down the hallway. While they watch us watch them, they seem to get a kick out of it, some enjoyment from seeing some of us vets getting more anxious, more angry, more impatient the longer it takes for 10 people to decide if the person has to pay the 6 dollar deductible. I mean come on people. It must be nice to have a job where you spend the majority of your time shooting the breeze and killing time to avoid working if at all possible.
I am not making this up.
After you get your paper from the travel pay agent, then you have to get back in another line to see the cashier. Make sure you stand behind the yellow line. The hallway is full of lines, one to pick up your medicine, one to see the travel pay agent, one for the cashier, one for the pharmacist(remember this one is the one to kill time for the pharmacy to get your meds ready-LOL). Heaven help the person who is here for the first time or an elderly vet with a hearing aid who is dumped off in the hallway needing transportation to his home. They could sit there for hours and not even be noticed.
So i got my ten dollars for travel and then i got in line to get my medicine. When i got to the window, the pharmacist said "We don't process your pain medicine until you get here to the window." What??!!!!!! WEll, didn't i just see 2 pharmacists in the past 2 hours? Now, i am standing in front of the 3rd pharmacist who says i have to go back to the waiting area and wait for my name up on the window.
So here i am , waiting, waiting, waiting and my hair is greying,greying, greying. I give up.
Does the American public want a healthcare system like this>?

Monday, May 25, 2009

Memorial Day

Today i want to pay tribute to 2 of my buddies -both Gulf war veterans. I met them after the war,one in the hospital,one online. In 1995 or so, i was in a Gulf war Focused Program at the Tampa VA. It was designed to try to work on all of our symptoms and give us counseling and teach us how to cope with our pain-both mentally and physically. I sat across from one guy and will never forget how angry he was. His name was Chaz Bey. He had served in the Army in Iraq. After the notorious Highway of Death, his unit was tasked to get the "crispy critters" as he called them,out of the Iraqi tanks and vehicles burnt up on the this highway. He was so full of rage so i thought i would get through to him by humor. Well, the first day, we sat around the table and we were each asked to talk about all of our problems from Desert Storm. I decided when they got to me , i was just going to tell everything. I mean, Hey , that's what we were there for , right?



Well, they got to me and i said:"Well, i have had severe bone pain in my legs since i got the 21 vaccines especially the 2.5cc of gammaglobulin in each butt cheek.And, i've got "Saddam's revenge". Well, the doctors looked at me and the other vets looked at me waiting for and explanation. I laughed and said,"Well, you know Montezuma's revenge, well,it's like that,only it's Saddam's revenge." People still didn't get it so i said,"I have had diarrhea all day every day since mid July in Saudi Arabia." Well, you know, diarrhea is something you just don't talk about.

However,that was what made Chaz laugh out loud. He said:"Oh yea, i have got that too. Try working as a cable installer when you keep having to run to Wendy's to use the bathroom all the time. He talked about how many good jobs he had been fired from because of rage. He was full of anger and would go off on rants that sometimes didn't make any sense. Pretty soon, i was the only one talking to him. We would always laugh about our "Saddam's revenge" and we kept in touch for long time after then he just stopped calling and writing online.

My other friend i met online on a chat board. You see, right after the war, there were a few groups online that were available to people who had allkinds of symptoms from Desert Storm. I signed up for some trying to get some help and trying to connect with other vets. Those boards are all gone now but i did meet a guy that always seem to be the outcast. In fact he told me he had been banned from alot of boards. He had some issues as we now say-I guess i would too if i was already in a motorized wheelchair with a bad case of MS and a whole host of other problems.His name was Mike Woods, Air Force. He was active on those boards bringing up all the unusual ideas for what ailed us. I ignored what the others said and we became good chat buddies but through my own illnesses, i havent heard from him and i guess he has gone on to heaven.

Today is not the only time i think of those 2 buddies. Sometimes i will think of them alot during the month,when i have had a hard time getting services at the VA. Last, but not least, i often think of a soldier from the 101st Airborne who was returning home after the cease fire was called. I remember he came up to the desk at the MAC Terminal where i worked to register for a flight home. When i looked in his eyes,i saw a vacant stare. He was gone-something he had seen had taken him away and only a shell with a uniform and red beret stood before me at the counter. I see his face often in my dreams and sometimes i will think of him if i see the Airborne on TV. I had to take him under my wing and make sure he got on the plane. I remember telling my family about him, i know often i repeat the story. God bless my mother, may she rest in peace. She always listened to all my mental anguish and my health problems even as she lay in bed stricken with severe RA and a whole host of other health problems. Every day she listened to how much pain i was in. She understood the pain. She always had patience listening to me talk about my stomach problems,i mean, who wants to hear about someone's crippling diarrhea problem. LOL She understood what it was like to have a life being stripped away, to be a prisoner to your body and to hear about my problems with the VA.Even though her hands were curled up from RA, she would lie in the bed and write Senators and callthem and write the VA demanding they compensate me and do something for allthe medicalproblems i had.God Bless you Mom.Now my sister Leslie has taken her place, listening to what happens at the VA nearly every day of the week. Without our families,what would we veterans do?

As this day winds down,i was glad that i was physically able to go to a service for the first time in years. But, lo and behold, Saddam's revenge had other plans for me and i spent the rest of the day running back and forth to the bathroom. Just when i think i can relax, Saddam rears his ugly head again and reminds me that we should have finished what we started in 1991.

Could someone pass me some toilet paper, please?

Tuesday, May 12, 2009

May 12 International Awareness Day

Today was International Awareness Day for NeuroendocrineImmune Disorders.Yes, that's a really big word.It includes Desert Storm vets with Gulfwar illnesses,people with fibromyalgia, chronic fatigue syndrome or ME as it is known in the UK.It also includes chronic Lyme Disease,Multiple Chemical Sensitivities,and others.
There wasn't too talk about it anywhere. I told my sister about it.I know the people at P.A.N.D.O.R.A. were thinking about it. I tweeted about it on Twitter.
I am going to get more motivated to promote this so that in 2010 everyone will be talking about it on May 12 NEXT year.

Friday, May 8, 2009

Trying to get the word out-sick from Desert Storm

(this is a story line i pitched to the BBCYourStory) HiI wanted to pitch a story line about Desert Storm veterans sick for 18 years from multiple chronic illnesses from more than 21 vaccines,environmental toxins,and much more.I am 46 years old. I have around 40 prescriptions.I went to Saudi Arabia healthy and vibrant as a 30 yr old staff sergeant in the United States Air Force.First,i am on a fixed income now.It started with severe bone pain in my lower legs.Then i started having bad pain in my abdomen and then the Saddams Revenge(similar to Montezuma’s),diarrhea. Carrying around a roll of toilet paper in your cammie pants is not attractive.It was so hot there, over 115 degrees every day. Inside the aircrafts, it would be 200 degrees. We had to run generators to blow cool air into the aircraft before we could load the passengers.Sometimes the planes never shut off and we would stand there breathing all the jet fuel exhaust from the military and commercial planes. The sky was already black from the Kuwaiti oil fires burning.So who can pin down the exact cause of chronic unexplained symptoms or what caused me to have so many types of arthritis and autoimmune disorders.I think it all started with my GI tract.Now that the President’s Advisory Council has confirmed that Gulf War illness is real,i am hoping it will help me and others, including those HiI wanted to pitch a story line about Desert Storm veterans sick for 18 years from multiple chronic illnesses from more than 21 vaccines,environmental toxins,and much more.I am 46 years old. I have around 40 prescriptions.I went to Saudi Arabia healthy and vibrant as a 30 yr old staff sergeant in the United States Air Force.First,i am on a fixed income now.It started with severe bone pain in my lower legs.Then i started having bad pain in my abdomen and then the Saddams Revenge(similar to Montezuma’s),diarrhea. Carrying around a roll of toilet paper in your cammie pants is not attractive.It was so hot there, over 115 degrees every day. Inside the aircrafts, it would be 200 degrees. We had to run generators to blow cool air into the aircraft before we could load the passengers.Sometimes the planes never shut off and we would stand there breathing all the jet fuel exhaust from the military and commercial planes. The sky was already black from the Kuwaiti oil fires burning.So who can pin down the exact cause of chronic unexplained symptoms or what caused me to have so many types of arthritis and autoimmune disorders.I think it all started with my GI tract.Now that the President’s Advisory Council has confirmed that Gulf War illness is real,i am hoping it will help me and others, including those from other countries that have been marginalized as well by being told "it's all in your head",
"here,take this pill".

Wednesday, April 22, 2009

Nothing like standing in line and listening to insults

Well , once again, last Wednesday, i found myself at my home away from home. The Miami VA. I had an appointment at 2 for Rheumatology. Well, i sat there and waited and waited and waited. Finally, another gentleman got up and went to the counter and simply asked what might be taking so long? Well, all of a sudden, there was a hustle and bustle of activity. See, the nurses hadn't even checked our blood pressure yet or gone through our pain questionaires.
So, i got called back and one of the nurses was talking about the guy who had asked the question. "It's called patience," she yelled out. I was thinking to myself what alot of nerve after they have been sitting back there on their asses for 2 hours doing who knows what. This is what the VA employees do though. They will talk about a veteran like a dog behind their back.
They were pissed because i guess they were hoping we would be cancelled because heaven help them if they had to stay past 4 to wait on a veteran to see the doctor.

So i see the doctor and lo and behold, i am having a lupus flare. My liver is enflamed. Well, i have only been trying to tell them that for over 6 months. My pain keeps me up at night. I hadn't slept in two nights. I had joint stiffness, malaise, fatigue, and a lovely malar butterfly rash on my face.
They diagnosed me in 1997 then changed it to RA in 2000 then in 2005 they said it was psychosomatic. All i know is on Mar 14, 1991 i received 25 vaccines and after i received 2.5 cc of gamma globulin in each but cheek, i was in severe pain from that day forward. So to make a long story short, i had to go to the pharmacy to get prednisone.
So i am waiting in line forever to get up to the window. The closer i get the more abuse i hear coming from the pharmacist. One Hispanic lady went up and asked for her Sin--throid. The pharmacist said "There is no Synthroid for you."
The lady said, "The doctor put it in yesterday."
The pharmacist said: He didn't put it in yesterday, last week, last month, last year.
I was thinking to myself, Yea i get the point. Another asshole with an attitude. Excuse my language.
So the next man goes to the window , an older Hispanic man, who appears to have had surgery on his arm. He says "I have been waiting for 45 minutes and i need to take a taxi to Port St Lucie and i need to get my meds."
Well the pharmacist said"Did you see your name on the tv screen?" The vet responded "No, but i need to take a taxi." So by this time, i am getting mad because the dude behind the counter had an attitude problem. So i said out loud" I am sick and tired of these people having an attitude with veterans."
So it came to be my turn and wheni got to the window I just said: Parker xxxx, i amhere for prednisone. I looked that dude in the eye and he must have known not to say anything to me.

Shame that our veterans are treated this way. American public doesnt have a clue.
More onthis same topic in the next blog. Please excuse the typos, i amhaving lupus flare.

Saturday, April 11, 2009

Having to "beg" for medicines and then stand near pee to pick them up.

About 10 days or so ago, I was nauseated. I can handle surgeries, severe pain every day, you name it but i can't handle nausea. That's my weak link. You see, I had run out of Protonix, an acid reducer normally given to cancer patients for nausea. I ran out because my provider had retired and didn't give enough refills. So i had been patiently waiting for an appointment with a new provider for four months. Meanwhile, my "problem list" was as long as a notebook page.
However, last Friday, i called the RN line at 8, 830, 9. They all told me to call the Red team pharmacist and ask for the medicine. I called at 9,930, 10,1030,11,1130, 12....the phone just rang and rang. Meanwhile, every day was another day of the dreadful nausea.
So Wednesday April 8, i started off to the VA and checked my phone messages. The first message was from the VA telling me my appointment had been changed to the middle of June!!!!!!!!!!!!!! What, oh no way.
I called the Red Team and they couldn't give me a reason why the appointment was cancelled.
I told them someone was going to see me. I was so upset-angry and tearful.
I called the patient advocate's office and they had an answering machine on at 2pm. I called the director's office and they said they would check into it.
I decided to call Senator Nelson's office and tell them what was going on. So they called the director's office and the doctor had to see me. They had booked 3 veterans who each needed an hour with the doctor so myself and another veteran were cancelled. So needless to say, we did not get to every item on my pagelong list of needs but at least we got to 2 or 3 of the most pressing issues. I have to wait until June to get an hour with the new doctor. Ridiculous. That is partially due to the fiasco of the Miami VA not sterilizing the colonoscopy machine for 5 years.
Just another day of frustration at the VA.
I almost forgot. I went to the pharmacy and stood in line for 45 minutes to find a puddle of pee in front of the pickup window-the tech said he was too busy to call housekeeping! ARGHHH and then i only got one of the medicines i needed right away.
More frustration.
The line is so long , sometimes they have to call the VA Police to maintain order in the pickup line. I kid you not!

Sunday, March 29, 2009

VA doesn't sterilize colonscopy machine for 5 years.

This week a big story surfaced in Miami regarding the Miami VA hospital. Evidently, they did not properly sterilize tubing and machines used during endoscopic procedures and colonoscopies for the PAST 5 YEARS. How does that go unnoticed? Well, i will tell you why. Just like any other VA hospital, most of the employees are more concerned with chitchatting, walking the halls, and mistreating veterans. Do you really think that the people responsible for sterilizing the equipment got any punishment or were fired as they should be? We will probably never know. More than likely, they were just shifted to another clinic knowing the VA. No one has to take responsibility for their actions at the VA. It takes an act of Congress to get someone reprimanded or fired from the VA , just like at any other government agency. These people are allowed to mistreat veterans and do their jobs half-assed as they so please. Media is always kept out and off the grounds. The media trucks this week were parked across the street from the VA. It's really hard to report on something when you can't even go on the grounds with a camera. Evidently, this debaucle also occurred at the VA in Murpheesboro, Tennessee and at one other location. Have you seen this on any national media outlet? Of course not. Why is Congressman Meek the only politician giving a news conference about it. Shameful, just shameful. I personally went to all the media trucks and thanked them for covering the story. It is important to get the word out to the more than 3256 veterans who had these procedures so they can come in and get tested for the 3 strains of hepatitis and HIV. Can you imagine a veteran like myself, who has more than 13 chronic illnesses from Desert Storm going to the VA for a colonscopy and being told 5 years later:"Oh , btw, you may have contracted HIV or Hepatitis A,B,C during all the endoscopic procedures you had for the past 5 years because we didn't sterilize the equipment between procedures. We just rinsed the tube out with water and kept on going." Now, I ask you if that was any other citizen going to a regular hospital, they would have gotten a lawyer by now.
The CMO of the hospital won't answer the question from Local 10's Michael Putney (How did this go unnoticed for 5 years?). Why can't the top people at the VA just answer the question.
I called Orlando VA and they said it didn't happen there but how can one really know for sure giving the VA secrecy when it comes to media?
So far between 10-20 vets have tested positive for strains of hepatitis out of the 3 VA hospitals that supposedly were the only ones who didn't sterilize machines properly. To mention another source of stress for veterans is the fact that the blood test results won't be back for 2 weeks!!!!
This again is shameful. Not only does one have to worry about all the procedures they had for the past 5 years but they have to fret and stress for 2 more weeks to find out if they have one of the hepatitis strains and HIV. Think of the consequences when you consider the phrase floating around for HIV. If you have sex with someone with HIV unknowingly and they sleep with someone else and that person gets HIV and then they have other lovers and spread HIV to other people and on and on. Think of the consequences and the possible numbers of people affected indirectly by the actions of these workers at the VA. Who knows how many are affected and what actions they have taken in their private lives unknowingly and possibly spreading these chronic illnesses???? It is just mindboggling and overwhelming to contemplate for most veterans. It should have never happened and unless more veterans have the guts to speak up about things that happen to them at the VA, these things will just continue on and on. Shameful.