white woman, no rythm!!!!

So yes, this is the second time I am reading this book.. I just cam across a quote that I want to add to my journal because it speaks to me in so many ways...

"No. I am not a brave soldier. I don't want to be a soldier at all. I've fought my battle for a long time. Its been grueling...and tough... and winnable. I'm exhausted. I've done the heart (transplant) thing so damn well I am still alive (seventeen years later), and I guess that's my victory. But I am not just an infinite heap of courage. I am a woman, Dr. Allen, a thinking feeling woman. I have my limits like anyone else... and I think I've reached them."


This is how I have been feeling the last year and a half now. The fight is just gone.. I have nothing left to give.. I have no more courage to battle another thing.
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Here is another quote

"This was how I saw it from the new vantage point of my living room couch, the big ugly secret for those who have no idea what it's like to be young and permanently sick. Everyone else's life goes on. There are fun parties and great trips that go ahead without you. There are others you are able to attend, but you're so sick when you do, it's almost as if you weren't there at all. You look at photos of yourself at these events and remember how hard it was for you to put your face up to the camera and smile. But no one knew, because you wore your mask, the one that turns you into a perfect heart (transplant) patient who refuses to drag a good party down."

My very first Cardiac Cath was when I was 4 months old...on 6/4/68 and it was for CHF and Pneumonia. But the first time I remember being in the hospital was for a cath when I was 7yrs old. 4/2/74.

The memories I have of being in the hospital are not the good ones my Mom recalled.. Like my brother coming to visit me, the girl in the other rooms birthday party, or me being the date of some young orderly to the movie they showed in the playroom.

My memories are of asking to go home, ever single day for a week, and not being let out. Every day it was the same like "I promise, tomorrow you can go home" and the next day the Dr. would say "No, not today.... but tomorrow, I promise". This went on for a whole week.. and people wonder why I hate being in the hospital even over night.

The only other memory I have of that time is of being held down, on a table, in the middle of the night, surrounded by Drs. and nurses all trying to get IV access. My Mom said that she came into my room the next day and my hands and feet were all swollen like balloons. Gee, wonder why I have an aversion to IV's and needles... hmmmmmm

Someone posted this on Face Book tonight
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Letter from a Mother to a Daughter: "My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago”... Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep. When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl? When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way... remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day... the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If I occasionaly lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you. And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad... just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you... my darling daughter. "

Happy Mother's Day!

I have decided to take a sabbatical (of sorts) from all things medical for a while. I am not sure for how long yet but at least for June and July. My Doctor was not very happy with me when I told her but I don't care. Let them be upset, I can not take any more and I need a break. I will still take my meds, still go for my blood draws and finish up the last two appointments I have this month...but after that no appointments for a while...maybe a long long while....

I believe in what I am doing 1000% or I would not be doing it. I enjoy, for the most part, the volunteering and I think it is going to open me up to bunches of new opportunities (At least I hope it is). Sometimes *opportunities* lead you down roads you may not want to go or are not sure you want to go, This is the position I am in at the moment. I may have the opportunity to volunteer for one of the biggest Non-profits in the world.. but I am hesitant... because they only allot 1% of their annual proceed to Congenital Heart Defects (Awareness, research, etc) Just 1% of millions, billions of dollars. That might sound like a lot of money to some but, trust me, its not. Its almost insulting. No, it IS insulting. I am still going to go to this meeting and see what they have to say... Keeping an open mind..

Steve used to say that he didn't like pity parties, not for himself and not for anyone else. He would not attend them because he *didn't like the music and the food was bad*.

Well, Steve, I guess this is a post you would not approve of.. but you are not here for me to talk to . You are not here to tell me a story, give me advice or sing to me. So I have to do what I have to do to let it out...

I am tired. I am tired of being alone. What is wrong with me that I can not find someone who loves me and wants to actually be with me (not just say the words but not be here). Where is my person ? The person who will wrap his arms around me and just hold me when I am having a bad day, the person who will love me no matter what? Where is he? Don't I deserve him? Have I done something so horribly wrong in my life that I an cursed to be all alone forever?

I usually blog these things but thought that this was to important a post to just put into a blog that no one else bothers to read but me. Important because it might help just one parent of a child with a CHD or one CHD'er. Its about how quickly things can change and how **I** view things in this life.



Wednesday April 18th started off as a normal day for me. I got up early, got on the ride, and went to see my friend Isabelle and her son. I spent the better part of the day with them and had a good time. We talked and did some CHD related work. I remember the ride up to her place because we rode by Revere Beach. If you know me even a little bit you know I have this love of the beach that goes far beyond just a normal persons. I think part of the reason I have this connection with the beach is because I can not swim, I can not run on the sand, I can not sit out in the sun.. Things I longed to do all my life, things my CHD prevented me from being able to do.



When I was in my 20's my oldest brother took me to FL the day after Christmas. On our drive home (New Years Day) we stopped at the beach. He rented a 4 wheeler and told me to go ahead and drive it. It was the scariest, most exciting, most thrilling experience. Something I had not done before or since. Something I would never have been allowed to do had my Mom been on that trip with us. He took video. When I got home my Mom asked what I had done. My brother put the video in and my Mom almost lost it on him. Yell at him about my heart and how I could have been hurt or killed... Hello???? I was standing right there, in front of her, safe and sound... unharmed and better off for the experience... But I guess I can't know what its like to be a *Heart Mom* just as a *Heart Mom* can't really know what it's like to be a *CHD'er*..



I got home around 5:30 ish and sat down on the sofa. It took all of about 30 seconds for me to mentally think *Oh shit*. I calmly waited for my neice, Julie, to get home so she could print out a copy of my Med list for me and then I dialed 911. I was in A-Fib... This sucks~!!

I found myself in the back of an ambulance going to the local hospital. The ambulance drivers tried to give me a good iv but I have poor veins and the iv infiltrated. Something they would not take care of until I got to the second hospital.



The ambulance driver gave me Amioderone, which I had been told was a *last resort* drug years earlier. Because of the bad IV the drugs did not really fully make it into my system...



I got to the first ER where they wanted to cardiovert me. Even though there was only one dr on. She knew nothing about me or CHD and she was unsure she could do it safely, she was going to *try*... LOL Yeah ummmm NO!!!! I asked he to please call my CHD specialist at Children's Hospital. She left the room and came back less than five minutes later. I was being sent to the hospital in Boston to be cardioverted. NO SHIT SHERLOCK REALLY???? Like I had no idea about that one beforehand lol :)



When I got to the ER in Boston they put two new IV's in, one in each arm... and took out the one that was infiltrated.. It took me until almost noon the next day before they actually cardioverted me..UGH!!! No food or drink since before 3pm on the 18th and they are bitching at me because my potassium is low. Well when you have not eaten anything to two days what the F*^& do you expect??? Then they tell me my INR is to low.. again no pills for 2 days ummm hello???? For the best rated hospitals some of these drs sure are idiots...



I was so glad when I was cardioverted. Its more of a hassle than anything else. At this point its happened to me so often that its more or less "one of things I just have to deal with". But it all the associated crap (drs, nurses, needles, blood, etc) that makes the experience so much worse than it needs to be.

There are things that I do not talk about, do not say, because I know there will be backlash. From family, friends, supposed friends, etc... I don't remember my childhood. Not at all. I think I have purposely blocked it out. When I was l7 day's out from my 13th Birthday my father passed away. I was so angry with him, I still am, for abandoning me. He promised he would be here and he left me. I know now that it was not something he wanted or had control over but it was the first time I think I really felt disappointed by anyone. How come he lied to me? He promised he would be around for my birthday and he wasn't. That was the first time I had survivors guilt. If I had been a better daughter, if I had been born healthy, If I had done even one of a million things differently then he would not have left me, my Mom and our family. It was all my fault that he died.. It should have been me. I was, after all, the *sick* one in the family. Hadn't I heard them say I was not expected to live? So why was I alive and my father wasn't?

After much thought and debate I decided that I was just going to go ahead and post this blog. It is going to be so long that it might encompass two or three actual posts. For this I am sorry... What you are about to read are my thoughts and feelings without filter. If you do not believe what I say, Like what I say, Like that I am saying it or are offended by it then I suggest you just stop here and go on about your life.

I had an appointment on April 6th with the Anesthesiology team over at the B&W in Boston. As part of my visit I had to talk to a nurse who filled me in on the basic stuff and got my signature on a stack of papers. While we were talking, this nurse and I, she said to me "So you are having an MRI of your head?" and I said "Yes, of my head and chest" and she replied "Oh yes, they want to look at that tumor in your chest". UMMMMMMMM?????? She said "Oh, didn't anyone tell you that?" I said "No". Then she looked in my chart and said "Oh, maybe they are just looking to rule one out". UMMMMMMM?? Yeah, cause that now makes me feel oh so much better. So this means that my MRI on Thursday (4/12) is a Tumor hunt. Honestly all I could say to the nurse was "Well, I really hope they find one" Come on guys... let's face it.. I have been sick with something since the end of 2010. I had to give up the one thing I loved most in my life, my position as Membership Director of the HRH Board because I just could not keep it up. I am done with hearing how "Nothing is wrong, you are fine". When I know damn right well I am NOT fine.



April 7th... Was the 8 year anniversary of my Mom's passing. I had a dream about her and she gave me a message to pass along to another family member but she did NOT have anything to say to or about me all day. It was a little sad but I figured the family member must have needed the message more than I did that day.

I am so glad that my Mom did not have to live to see all the medical problems I have had to face since she has been gone but, I feel an enormous amount of guilt. It should have been me that had a the stroke, it should have been me who had the cancer, it should have been me who died. I know that people say I should not feel that way but I wish they would stop saying that to me. My Mother should be the one who is here to enjoy watching her Grandchildren and, now, Great- Grandchildren as they are growing up. She could have had a wonderful life and been able to live it without me.. Without all the worry and the fear of me taking my pills or me getting sick etc... I was always meant to go first.. I was the sick one in the family.. and I know that my family feels the same way. That I should have been the one to die. Not our Mother, not their Sister, Not their Aunt etc... I ruined my Mom's life and all she got for it was a stroke, cancer and death instead of having the wonderful life she was entitled to. If only I had been born "normal", if only I were a better child, a better daughter, a better care taker... she would still be here, with us. But she is not and no one hates me more for this fact that me. I owed it to her to do so much better than I did..... I owed it to everyone who loved her and lost her..

"Put me out of my misery
I'd do it for you, would you do it for me"
Soul Asylum - Misery