Fact from Fiction and setting some things straight

My biggest pet peeve  is those who spread rumors knowing full well they have no clue what they are talking about.....don't you hate that?  Nothing worse then not being able to trust a person and this makes me mistrust the most.

Hey Charlie, why does the world hate Casey Anthony? "oh because she killed her kid and then went to the mall to shop and bought herself a Tiffany necklace with winnings from the lotto that she also used to pay off the judge and the police department OH and did you know that Angelina Jolie is slated to play her in the film they have in the works??? Yep and  She will make a whopping 75 million for her story in People mag too....oh and Brad and Emily are hiding out in a cave in San Juan Del Sur in Nicaragua pretending to be broken up too!"

Grrrrr.....can someone shoot Charlie for me please? Don't kill him....just in the butt with a sling shot and a bb gun will work.....enough to put him in the hospital for a few days with a laptop and a tutor to learn how to look up "facts"......

I was raised to believe that a true sign of intelligence is admitting you don't have all the answers but knowing how to find out.....research.....investigation.....the internet gives us the greatest tool there is to find out EVERYTHING we could ever want to know these days, so to ME, there is no excuse for such ignorance. (that and I hate when religious zealots spread the word all the while talking behind everyones backs, lying, spreading rumors and spouting about how the end of the world is coming and those who don't believe in THEIR beliefs will burn in a firey hell for eternity! God help the Gay people! LOL)

I taught my kids by example......if I didn't know the answer I told them so and we looked it up. (I also taught them tolerance for ALL people and there isn't a racist or biggoted or superior bone in not one of their bodies!) My kids definitely have their faults but they are avid researchers and it is virtually impossible for them to even see  sexual preference or color....they simply do not even notice.....(oh and they grew up loving classic rock and were at concerts at very early ages! Im proud to say that my kids love the arts and music! In fact, my two youngest sat in the third row of a Simon and Garfunkel concert  in Austin in elementary school and stood up dancing and  singing all the words the entire time when most kids in their classes said "Simon and WHO??" lol)

Here are some FAQs

FIRST:
PLEASE STOP MISTAKING MY ILLNESS FOR HEP C OR HIV!!!! WHAT I DO HAVE COULDN'T BE FARTHER FROM BOTH OF THOSE!

Hep C is NOT even CLOSE to what I have.
Let me explain.
The word "hepatitis" simply means inflamation of some sort in the liver......(and I encourage you to look it up if you don't believe me).........the letter beside it or the word beside it explains the REASON the liver in enflamed.

Hep C is a viral, contagious condition. One where something foreign entered the body...usually through tainted blood, bodily secretions, dirty needles......

Automimmune Hepatitis is a condition where ones immune system is confused and attacks healthy tissue. It is genetic (not hereditary) and nothing one can do causes it....not a drink, nor a needle, nor sex....none of that causes an Autoimune system to overreact. It just is bad luck of the draw......(have I mentioned I have never been lucky?)

This is also the exact OPPOSITE of HIV.

Patients with HIV have an immune system that is broken down....it is weak...it cannot fight off infection.

People with Autoimmune Disorders have OVERACTIVE, STRONG, FIGHTING immune systems.....allow me to explain in elementary school language for a moment as this is how I actually learned...

Our immune systems are built into our bodies and are in place for this reason......they are  like soldiers to fight off infection. When we get sick the soldiers ban together stand up and FIGHT....hence the white blood cell count rises considerably. They dont stop until the infection is gone....usually with the help of antibiotics unless it is viral then they fight alone......

When one has an Autoimmune Disorder (and there are many, many, MANY of these) the built in Immune system is always in "fight mode"....it is always fighting off what it thinks is infection or bad cells when in reality it is fighting and killing healthy tissue. That is what is happening to me. There is no cure because they don't understand why the immune system gets confused. there is only treatment used to slow this process. (in my case I am allergic to it....remembering how UNLUCKY I am!)

My confused  immune system has attacked my gall bladder (its since been removed), my espohagus (major sugery at the Mayo Clinic in Minnesota in 2005) and my liver......along with its bile ducts....it has slowly, systematically attacked the healthy tissue that was once my liver and has made it a scarred organ that looks shriveled up and dead....necrosis is the death of cells.....necrosis is all over my liver.....necrosis is irreversable. The only "cure" at this point is a liver transplant. They put a stent in last year that helps the blood flow through it and stopped the middle of the night variceal bleeds but this stent 9aka TIPS Procedure) also speeded up the process of the disease progression.....this illness is all about weighing the odds....which is the worst or lesser of the two evils is usually the way it is.....

There have been times in my past that ignorant medical personel have been the ones to "mistakenly" confuse my condition with Hep C patients....this PISSES ME OFF.

Once I was in the hospital in New York and on the ride down to MRI, I (as I ALWAYS do as YOU should TOO) grabbed my chart to read it. (not an orderly or nurse alive can keep ME from reading my own records!)

The first time I saw a note that said "patient with Hep c..." I blew a fit! I did not stop until the resident who wrote those notes was in my hospital room explaining why she inadvertantly wrote the WRONG diagnosis on MY medical chart....do you know what her dumbass answer was???? Oh, most of our patients have Hep C so i just assumed...."

(BE YOUR OWN MEDICAL ADVOCATE AS NO ONE ELSE WILL CARE  ENOUGH ABOUT YOU TO BE THAT! YOU HAVE THE RIGHT TO DICTATE YOUR COURSE OF ACTION, YOUR MEDCIAL CARE IS IN YOUR HANDS. QUESTION EVERYTHING THEY DO! IT IS THEIR JOB TO ANSWER TO YOU EVEN IF THEY ACT LIKE YOU ARE BOTHERING THEM....THEY WILL GROW TO RESPECT YOU EVEN IF THEY ARE ANNOYED BY YOU)

ok back to my story of the imbecile who wrote the wrong diagnosis......(slap me when I get on my soapbox!)

I screamed at that woman (Im sure to this day she remembers me and hasn't made THAT mistake again! To GET THAT MISDIAGNOSIS OFF MY CHART IMMEDIATELY AND OUT OF MY MEDICAL RECORDS BEFORE IT GETS ENTERED INTO A COMPUTER SOMEWHERE!

This also happened to me with a dentist who had zero clue what autoimmune meant......and way too may promary care physicians who asked ME what labs to run since they had no clue.......

I have been seen by WAY too many specialists to count. If I am anything , I am thorough......denial can do some strange things to a person like me....I have been seen by the greatest in Hepatology in New York, Texas (Dallas, Austin, San Antonio AND Houston.....lol), Mayo Clinic in Minnesota, and the "Wizard" as he is known in the medical world, Dr Al Czaia, from Europe who wrote the studies on what I have not only evaluated my records but I flew to see him and it was then and only then that I think it began to sink in that maybe it wasn't all a big lie......I really have this illness. He loved that I was my own advacate...we even took pictures and I have remained in contact with him periodically throughout the years. Many specialsts have told me over the years that he uses my case in discussions and at conferences.......lol.....seriously!

Al told me the othe doctors  did miss something though.....not only did I have Autoimmune Hepatitis but I had the over lap of the two other autoimmune liver diseases as well....PBC AND PSC.......YAY ME! Im a freak of nature!

He also introduce me to a leading Esophageal specialist from Scotland.......he ran tests and determined that "BY GOSH!" (his words lol) I was the ONLY person he had met that the immune system was attacking the esophagus as well! He was so thrilled and intruigued by me!

He authorized the surgery so I could swallow again and then said if this comes back in the next few months he will have been  RIGHT and please please come back to Mayo in March  so I can do a study on you! (I wish I could type like his Scottish accent...it was pretty funny and cool)

He was indeed correct but I didn't go back.....I instead sent him a postcard from Scotland when I went with my son who was starring in Paganini at the Edinburough Fringe Festival at the Churchill Theatre! I remember telling him his country was beautiful but I was not going to particiapte in any studies that I was finished being the "sick one".....he wrote me back and asked me to please change my mind and if I did to contact him.....then he asked me if I ate something that escapes me now whie I was there in his hometown!

No one wants to be that case....no one....especially not me.....

Right after I got home from my surgery in Minnesota I stopped all meds and left my ex husband and dove head first into my new career.........work.....work....work....men...men....men...work ....work....men....lol...more men and more work......

I decided life was to be lived and no one would know ever again that I was sick and from the year 2006 until that dreaded day this past  March of 2011 MOST people had no clue at all of my illness....just a few chosen VERY close friends and of course my family......I was deteremined NEVER to have to explain to anyone again the differences betweenAlcoholic cirrhosis and what I have...and Hep C and what I have....when I ended up in all those hospital stays I would say things like "Oh I had pneumonia" or something equally as simple......I didn't want anyone to know....and I was pretty sucessful at hiding it for a long time.....

I decided Id rather have a shorter life of quality than a longer life filled with medical crap every single day......

March of this past year during the world biggest music festival SXSW changed EVERYTHING......when Dr Poreddy  sat me down after I had just missed the festival due to yet another long hospital stay he said to me....."you KNOW what i am going to say.....you KNOW this Tammy"

I asked...."how long do I have?"...he said "Several months to a year at best without a transplant. We need to get you relisted as soon as possible and get this insurance mess straightened out"

He then went on to tell me that I have progressed to an advanced Stage 4...this stage is called End Stage.....