It has almost been 5 years. May 2009, My month to die. It is almost time.
We lost the house in the flood caused by Hurricane Isabel, in Oct 2003. We lived on the boat for a while, then got the all coveted FEMA trailer, in February 2004. That little tiny 27 foot long travel trailer, brand new, shiny, and full of formaldehyde. It really stunk in there. but we had nothing else, so we huddled into that little trailer.
UPDATE DR'S NAME REMOVED
UPDATE: TALKED TO THE STAFF MAY 25TH IS THE "I'M STILL STANDING PARTY" SEE WEBSITE
In April 2004 we finally broke ground to rebuild. I was working the excavator, while hubby shoveled up the debris. The neighbors loved it, there she is High Powered Corporate Mucky Muck, in the seat of a backhoe, tearing down her house. Why? Why did we have to do the work ourselves?
Flood Insurance of course, The county condemned the house, but the insurance co, they only paid for replacing the bottom of the house. and not the frame or foundation, just the wall board, carpet and the like. So to rebuild our entire house, we got around $50,000. We HAD to do it ourselves.
Anyway, not the point of this diary.
The Point is May, May 2004.
I hurt myself, running that excavator, hurt my right side. Memorial Day weekend May 2004. I ended up in the emergency room of one of the INOVA Hospitals. (I live in Maryland, but my job was in Northern VA, so I took an apartment close to work, yes I could afford both the house and the apartment)
My Daughter took me to the ER, I remember laying in the bed. It is not a particularly busy hospital, so I was seen rather quickly, it was a Tuesday Morning.
First they did the x-ray, the ER Dr came to see me and asked permission to do a CT Scan. When I pressured him for why, he blew it off as; still Looking.
but he really wasn't because a couple of hours later, he finally came by the room again and told me that I needed a pulmonary specialist. But he refused to tell me much more. I thought it was very odd.
I called the number they gave me as soon as we left, and was given an appointment the next day. It never even occurred to me that this was odd. So the next day I went to Northern Virginia Pulmonary and Critical Care. (CRITICAL) that I noticed.
My appointment was with Dr, Wxxx, young female, and pregnant. She was not exactly kind. She took the CT Scan they sent me home with, and the chest x-ray. She went into the next room for a only a few minutes and when she came back we told me:
"There is good news and really bad news. I will tell you the bad news first. You have interstitial lung disease. It is really bad news, because this disease has no cure and no treatment. From what we know right now, from the time of diagnosis to the time of death is usually around 5 years."
I could not breathe anymore, I didn't ask any questions, I simply could not think or breathe. I was alone here, on the edge of an examination table, being told I was dying. My mind was simply screaming at me. But she went on:
"The good news? Is that it is most likely caused by a foreign agent, Asbestos, Chemicals, something like that, and your family can sue and win a great deal of money."
I still could not breathe; I didn't know what to ask. What to say, what was next, I felt paralyzed. So she instructed me to go to the nurse, and she would perform a 6 minute walking test to determine my lung capacity, or something. So I walked for six minutes with this thing on, telling me and the nurse when I got to her end of the hall, my O2 levels.
I just remember being rather numb. Walking and wanting my husband to be there, to help me. To tell me she is lying, I only came on my lunch hour; I needed someone to get me home. But he was in Maryland.
The next few months were a whirlwind of biopsies, second, third fourth and yes fifth opinions. Johns Hopkins, Specialist in four states, Christiana Care, GW Hospital, no one would change or alter the diagnosis at all. Anger, fear, depression, wow, what a ride! I almost died in GW Hospital from the open lung biopsy. (not needed by the way) Courses of useless treatments, designed to make me feel like we were trying. Now my teeth are rotten from the drugs. I get pneumonia every year from the damage done to my right lung in the biopsy, I am considerably weaker than I used to be
And from there, my life began to unravel. Slowly at first, missing work, too many doctor's appointments, too much down time. I went from having all my leaves maxed out, to running out of both sick and vacation time. My boss was great, he treated me with respect, so they transferred me to the Dick head that would get this sick woman out of Sr Management, and eventually get rid of me.
I made good money and had saved a considerable sum, so I have kept us alive and going for the past 2 years now. I planned for and paid for my funeral, body disposal, and wake. I did a will, and living will. I have tried a couple of businesses, and tried to go back to work. (No one will take me, at my level, everyone in the other companies, who do what I did; all knew I was sick too.) I house, to rent out, I bought a restaurant for my hubby to manage, hoping these investments would give us a little freedom and income. And mostly for my husband, to have something when I go. I have not been wildly successful. The restaurant is on the brink of nonresistance every week, month, etc. My savings have run out, and we are facing foreclosure, as are so many others. These 5 years have gone quickly, too quickly.
Now my date with death in May 2009....Is Right around the corner.
Just one problem.............
Hey Dr Wxxx, F U C K Y O U
I am still here, and the party will be at my restaurant, next month,,,,,,
You are cordially invited to the "I am still standing" Party to be held at my restaurant, The Great Bluein Shady Side Maryland.
Come have a drink on me, have a dinner on me, you and your Partner there, Dr McXxx. Stop on by. I may be weak, slow, and poor as hell. But you know what
I AM STILL ALIVE! SO F U C K Y O U
(PLEASE EXCUSE THE PROFANITY, IT IS THE BEST EMOTION I CAN EXPRESS OVER THIS)