View Full Version : Been gone for awhile.
02-27-2010, 08:28 AM
I must apologize for not being around for some time now. The ups and down and the multi trips to the VA has keep me from not wanting to do much typing. I'll try to do better in the future but no promise. Here is a little up date.
Thursday I was back to the VA for another biopsy. This time in my neck. I stopped by my rheum to talk to the PA about my last biopsy. This one was for SS. When Dr. Mass found out that it was neg. he went to Dr. Fishbach with the results. Then Dr. Fishbach, who is head of ruhematology at the VA, got with my dermatologist, I call her Dr. J she is so sweet. Now with their heads together they started looking out side of the box. Seems that other departments have dropped the ball and not done their job. Dr. F & Dr. J now figure I have a very rare disease that only a few people in the world have. Its still in the auto-immune area but can become Lupus. Dr. F read Lisa and I the whole information on it. Now don't ask the name as it is Asian. He was supposed to write it down for me but we both forgot. Now I have taken over my medical care and will inform all the different doctors to look out side of the box.
I'll get the results on the neck biopsy on Thursday and have to be back to the VA in San Antonio on the 8th & 9th of March.
Our son came down for a week leave so he was there along with my daughter to support Lisa. Here is a photo taken Thursday evening before his flight back to Iowa.
Again I do apologize for not replying to emails that I have received. Those of you that have emailed me I do keep you in my thoughts all the time.
02-27-2010, 09:40 AM
Do not apologize for not being around, especially given the fact that you were taking care of your health! I did some research to see if I could find the auto-immune disease that your doctors were speaking of, but there are too many to go through!! I am so happy to hear that your doctors are working together FOR YOU and are willing to "think outside of the box!" This fact and the fact that you are still taking control of your health care are huge benefits for you!
I loved your family photo. How long was your son's leave?
We are always so glad to hear from you, but do not worry if you are unable to post often. We will be here whenever you do post!
Peace and Blessings
02-27-2010, 10:20 AM
He was only here for a week. Way to short a period of time. It had been 3 years since our last visit. We did get out for a short sail while he was here. He's leaving for Germany in September for 3 years. That's going to be hard on this old man.
I know the name of the first part of the disease but didn't want to offend anyone by posting it. I'll call Dr. Mass on Monday and get the full name. I want to know more about it.
I'll try to do better on posting in the future.
Now I lay me down to sleep And Pray the Lord my soul to keep If I die before I wake Feed Jake He's been a good dog My best friend right through it all If I die before I wake Feed Jake
02-27-2010, 01:00 PM
Oh You have been missed,welcome back David,
Goodluck with the results and so glad to hear you have good doctors who seem to be listening and helping.Oh what a lovely family you have and your little dog,so cute.Im so glad you had your son and daughter with you.Lisa is looking fab and you look lovely too.I loved looking at your sailing photos.Dont worry about getting online.You come when you feel you can.Once again goodluck with the results.
03-09-2010, 06:27 PM
Anyone ever hear of Kikuchi Syndrome. This is what the VA now states that I have. Just got back from 2 day in S.A at the VA. Now they want to do a ultrasound biopsy even tho they just did a needle biopsy in the growth in my neck. Well its all about their funding and not my health. Getting to be a long story of the ball being dropped and the run around.
Like Dr. Fishbach said yesterday by the time we can get you straight you'll be dead. Wonderful new.
03-09-2010, 07:06 PM
Wow at last they have a name for your sickness!! Ive not heard of it but i will look it up.Goodluck with the biopsy and i so hope you begin to feel a little better soon.Hope Lisa is doing ok and Miss Froggy.xxxxxxxxxLove Amanda.xxxxxx
03-09-2010, 09:31 PM
It's good to finally have a name for what is bothering you, even if it does sound like a sneeze. Just keep hanging in there and prove that doc wrong - be the person who lives for a long, long time with that disease. Besides, you've got to be around when I move back to SA in 2012 so that we can finally meet for coffee!
BTW, you have a lovely family and a cute dog.
03-10-2010, 08:02 AM
Amanda to answer your question about Lisa. She is now a basket case with worry about me.
I don't think at this rate I'll make it to 2012 for us to have coffee.
Sorry I just saw the Thank You thing.
With my mental state right now and the way I have been treated the last 18 months I'm glad I own a boat. The VA is all about tying up loose ends and not about treating the patient. There is more to treating a patient than just the physical part. They aint treating that part. There is a mental part that also has to be treated to deal with issues one is having dealing with what life has dealt them.
You get an urgent phone call from a doctor telling you that they feel you have cancer in you left lymph node. Want you there on Monday, this is Thursday, to remove the lymph node. On no Monday is a holiday so we'll do it on Thursday. You wife goes nuts because she lost her grandmother from cancer in a lymph node. Long story. So now you family is all worried that husband and dad has cancer. So your daughter and son are there to support you and mom. The VA doesn't take it out but does a biopsy instead. Results. Something is there but they are not sure what. Monday 2 doctors say remove the lymph node and turn it into dinner sausage and find out for sure. ENT doctor is to do it. He decides not to but to do an ultra sound biopsy. So now you are waiting for the biopsy. Wife still going crazy, family all upset and worried.
Not to turn this into political and I do know that we need health care that people can afford. I have government run health care and I sure hope that for us here in the states don't get a national health care like the VA. My health care is not free I paid the price of serving my country for 7 year. I was exposied to Agent Orange. I have mental issues because of what and to whom I did to a people in Vietnam.
03-10-2010, 01:31 PM
I still say just hang in there and beat this thing.
I know about military health care. When we were at Tinker AFB, we wives and mothers threatened to put a sign on the base hospital - "Worst Care Anywhere". I worked for a midwife off-base, and there were many, many military wives who had our babies at home to avoid that place.
However, civilian health care isn't much better. The big insurance companies make it even harder to get tests, etc. than the military does. The whole system needs an overhaul.
My Dad had some secrets about his duties in Vietnam that really seemed to bother him, too. He wouldn't even talk to Jeff, who has a very high security clearance and offered to listen.
I know it's rough, my friend, but hang in there and keep insisting that they help you!
03-10-2010, 01:53 PM
I feel your pain. My Dad died of Hodgkins Disease in 1974, when I was 14, and had been in the care of the VA for most of the years he was sick. It was so hard for him, and for all of us, with all the hurry up and wait, and all the red tape to get anything done. You and he are heroes. Not just because of what you endured in the military, but, for what you represent to everyone fighting to have just one more year, one more month, one more day with their family. Far too many people just give up, many give in, and some take their own life. It's horrible to watch their families struggle for the rest of their lives with guilt and questions. Every single one of them asks what they could have done, or not done, that would have kept their loved one from killing themself. Many of the families fall apart from the strain.
Whatever you do, no matter how tough it gets, never think for one minute that it would be easier, others would be better off, or that life would be happier for anyone if you were to be gone. I know that for me, even though my Dad was so sick, and couldn't do any of the things other fathers did, I was glad and have great memories of what time we did have together, and would give anything to have had more time. Not more stuff, not more to do, just more time.
If you ever wonder why you should keep fighting, just ask your kids or your wife and they will tell you why.
I agree, a national health care system like the VA health care would be a crime against the very people it's supposed to serve.
03-12-2010, 10:46 AM
I am speechless. I think of you and Lisa sailing around in your boat, and I also hear about your many "worthless" trips to the VA. You deserve to receive the same level of commitment that you gave to your country. I am sorry that you are not being treated with the high respect that you have earned.
Now you have to hurry up and wait for the biopsy results...that is just cruel punishment for no wrong on your part.
I wish you and Lisa many years of sunsets on the water.