My life became surreal......I felt like I was living in a plastic bag and everything was blurry and confusing...between the reality of my situation and the drugs they prescribed I was a basket case! It sort of felt like I was always wearing sunglasses and seeing my life through someone else's eyes. (to this very day it is hard for me to wear sunglasses because it reminds me of those days)
Prednisone might be a "miracle drug" but if you are allergic to it (as I turned out to be) it will severely impair your vision, judgement, create brain damage, psychosis, hallucinations....and in my case, many times I didn't even know who I was! I couldn't drive safely....I couldn't sleep....and all this on the absolute LOWEST dosage they make! My poor kids were living with a stranger. A stranger that had NO clue at the time that she was acting so strangely!
My youngest daughter would be up with me in the middle of the night trying to calm me down and reassuring me that the spiders I was seeing on the walls weren't really there. She would remind me what day it was, what time it was and it was SHE that eventually called the doctor even at her young age to say "my mom needs to get OFF the meds!" She lost a lot of school in those days because she was always playing nursemaid to me. My heart breaks knowing this.....
My husband didn't handle this well. He blamed me. I remember the day we were on our front steps and he started to yell at me "Everything was going so great! And YOU have to go and get sick!" He ran off down the block and didnt come back for several hours and when he did return he was extremely drunk and crying. Each day he got worse and worse.....
This was the beginning of the demise of my marraige. He simply couldn't cope with it. The psychologists explained to me that it was easier for him to "disconnect from me" immediately rather then wait for me to die. For many years we were very close. He was my family. This was hard to live with. But when you are so drugged you cant seem to move......I began taking anti anxiety meds and tranquilzers to help with the side effects of the drugs...hence I was feeling even less......
The kids were suffering due to the chaos that became our lives. Everyone was always either angry or sad....no "in between"....angry or sad.....angry or sad.....sometimes they would find me just staring into space......
My husband started to take his frustrations out on the kids. Each in a different way. And I was no where to be found. i was either drugged or in such severe denial that I was an absent parent all the while participating in all of their school functions. It was a bizarre life to say the least! One that makes me very sad to remember.....its funny how you can feel sorry for yourself even hen you're in complete denial.....the mind works in strange ways.....
I stopped taking the meds that made me "crazy" and they started me on double dosages of the imuunosuppresants. This made me tired all the time. It was a viscious cycle of new doctors, new meds, new tests.....new procedures.....
I went from being a healthy and happy 35 yr old to someone that once looked a BIT like Tammy who's life was now all about being sick......and all of this was WAY too premature! I was only in stage ONE for God's sake!! I look back now and cant help but think I want those years back! I wish I had had more knowledge then and would have listened better to the specialist when he said "Treat or don't treat"
I want to change the past and I wish I didn't find out until I reached stage 3 at least! My kids would have been grown by then and my life would still be in New York and i would be happlily married! But we cant change the past. We have to move forward and learn from it. Do better.....live well....
The online support group helped a bit but there were so many personalitites conflicting that I branched out and formed my own and invited those from the big group to join if they wanted....and to this day that group is still in existance. Im proud to say this was my first effort to spread the word on organ donor education! And I met some of my dearest friends through that effort. Peg, Dave and Susan are the three dearest to my heart....all three had their transplants an two are still alive to celebrate it! (a seperate blog on Susan will be in a future blog....she died right after "911" after running 20 city blocks while breathing in asbestos and debris and developed a severe lung infection and her new liver rejected.....she was 31 when she died....in December 2001 I will miss her forever)
I joined the American Liver Foundation and took it even a step further and became the Executive Treasurer for the Greater New York Chapter. A position I held for almost two years. I was scheduled to appear before Congress to discuss Organ Donor Awareness when my husband at the time decided we were selling the house and the business and moving to Leander Texas to be near my sisters who had moved there years prior. Little did I know that his REAL plan was to be near the music community as he wanted to leave his family and become a musician! UGH! To this day THAT makes me laugh AND cry!
I went kicking and screaming!
Texas? I did NOT want to live in Texas! I'm a New Yorker and to ME, Texans were all hillbillies who wore cowboy hats and big buckles and all I envisioned was tumbleweed rolling down the streets and lots of people chewing tobaccy! LOL
We landed in Texas and I was immediately told that I was NOT to work...so what did I do? I went directly to the local school district and applied for a job! LOL And I got hired on immediately!
Those turned out to be five of the happiest years (and saddest) of my life! I worked in the assistant principals office and my job was to handle the substitute teachers on our campus and the kids sent down on discipline! I learned THOSE kids were the BEST kids! The artistic, creative ones with so much promise.
I joined the theatre department and co-directed one act plays until the day i left the school......(and I am pleased to say we took first place EVERY year I co directed! LOL).........and mainly I stayed off the drugs whenever I could. I felt fine when i was off medication! the only time I even felt sick was on the drugs!
Next up....life in Texas, struggling with being confused for people who have Hep C and other viral diseases or alcholic cirrhosis and the frustrations that come along with THAT............being listed for transplant in Texas with my ex husband being my donor, and the end of my marraige.....then on to how I came to be a talent buyer in the midst of all of this craziness......
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