Follow Me On My Journey

This year was a hard one for my family. This year was not as hard as last year was, however, hard and emotional in different ways. I feel as if this year, I am the one who fought for my life. No one died. I did not have to eulogize anyone, Thank G-d! However, as stated in the title, I have been sick for almost a full year. It started in February, with a weight loss, but I eat healthy so I thought nothing of it. A month later in March, my belly started to fill up like never before. I began to look pregnant. I had migraines daily, and my belly got so big that my belly button inverted. I am not able or advised to have a baby so this was extra hard! Because I'm strong, and perform, I made up a clever story about my 'pseudo baby' as it was easier than telling people I was in heart failure and the doctors were fighting over whether it was my liver or my heart. This went on for 6 months. I had multiple belly taps, and the fluid, called ascites, would come back literally within...

There are these thoughts and innate feelings. I have as a person with a CHD (congenital heart defect). I am learning that a lot of other CHD'ers as we are called or now Adult CHD'ers feel the same way. I have primarily heard this from woman. Nevertheless, the men too often wonder when the other shoe will drop. I for one go about my life as fully as I can. However, when the lights go out, that is when the worry starts to happen, and I can almost predict, how and when the other shoe will drop. I have predicted it accurately a few times, which is what makes this last bout so difficult. I knew something was wrong with my heart and my body, but did not know what. I spent months in fear, and trying to go about my life was difficult, to say the least. (That however is for another post). It is the fact that all CHD patients have this ability to know when the good is good. When the bad will get worse, and when the good is temporary. Part of that comes from our physicians, but a la...

I promised I would keep up my blog now that I'm having health issues. This morning I get a call from my cardiologist's secretary that from 12-2 tomorrow I'm going to me the "T" Team. I'll meet the transplant coordinator, the psychiatrist or psychologist, not sure which one, the person in charge of insurance and finances and finally the social worker. I will then see my doctor at 2:00 which was set up from last week. This call took my breath away, but the positive is that I can meet them and have that part over with before starting testing next Friday. So as far as knowing if I'm on the list or not sounds like it will happen a LOT faster than we thought. After, I'm on the list who knows. I will write about tomorrow. Tonight I just hope my exhaustion is more than my nerves and that I sleep. xo- Ellen

Today I had a lovely day. I went to see my counselor Amy and it's great that we can pick up where we left off say 15 years ago! We can chill and watch a TV show and know what the other's thinking. It has not been weird at all to reconnect with her, except that I have gained 2 inches in height on her! But I still love her like a sister and will always have her back and she definitely caught mine in my family's time of need. She was close with my brother 20 years ago, so she knows that I'm in pain and she takes care of me like I'm her family and I do for her!! We had a great day of chilling and healing today. The good thing is that there's always more time to do that. I did all this today and spent a lot of time with an old friend, which is so vitally important, but I did not do yoga & meditation for the year yet. This leaves me 6 more days to get two yoga and meditation sessions in. I'm trying for tomorrow or Wednesday depending on errands and definit...

I did not realize how long it's been since I've blogged. I've had a lot to say, but was a bit scared to put it out there. I realize nowI don't have to and can write but not publish it to Face Book, or just write in my journal. I start this year smarter and stronger than I started last year. Obviously I will NEVER get over the tragic loss of my older brother Andrew. I do dream about him quite often which is a source of comfort, but is always a disappointment when I wake up and realize the reality, that is a constant source of pain which we all feel responsible for. I did however do a lot of self work and inner soul searching. Every year people make resolutions. How many of those stick? I'm not making resolutions, because I will be the first one to drop the ball on one. This year I will change 2 things in my life that can be measured and if I fall off, I can always get back on. I really enjoy yoga, but have not done it in months. I will include yoga 2 days out of the ...

Can anyone tell me how to deal with the loss of my brother? Can anyone tell me how life is supposed to go on from here? Can anyone tell me how to handle all the reminders that there are of him or how to not cry when I see something mundane that reminds me of a time we shared? If anyone can tell me how to deal for real not day by day, then let me know because he left us to go onto a better place, and the one we're left in is all ugly and black to me. Can anyone tell me how not to break like a shard of glass again or to say goodbye to his kitty cats on Sunday? Tell me please, cause thinking about all of this takes my breath away! I'm glad his cats are going to family and that they will be together but, they are here and warming up to us and saying goodbye will hurt more than it should. So tell me how to handle that? I'm trying to keep it all togehter but don't know for how long I can do that! I'm strong but seriously, there comes a time and a place. So tell me ho...

Cute Cats and Gray Hair! These are the words I keep using to summarize the last 7 years of my life without any emotions. The fact of the matter is there is a lot of emotions and a lot of baggage (literally and figuratively) that accompany the experience of your first apartment. I've been told that 7 years is fairly long to stay in your first apartment. I agree as my place was over the LIRR I lived on the top floor, apartment 7C and every time the train went by my toaster tray would rattle. I kid you not! :/ I hated that and now it will be one of the things I'll cherish from there. The truth is I found a lot about myself in those walls. I found that I have the balls for what it takes to get up on stage and sing for a room full of people I don't know. It all started with CPW = Cabaret Performance Workshop, with the brilliant Helen Baldassarie. I gained the strenght and a friend to let me get up on stage and sing in a cabaret club. Kristen then lived with me for a while and I...

I was so unbelievably productive today I can't believe it despite the heat. I think the disgusting weather was pushing me forward to a cool, relaxing shower in my mind. I spent close to 2 hours in the library and was then on my way to Queens. I packed as much as I possibly could without passing out! Literally!! It was HOT in the apartment that when I left the A/C had not even started to cool the place off. Pack a box, sit in front of the A/C with a glass of water. Slow but I did manage to pack most of my linen closet. The heat is totally messing around with my internal thermometer but I have to pack because July 22, will be here before I know it and then I can take a day to lay in the coolth of the A/C in my new place. My new place is my old place or my safety spot in tag. Home. That's right for the mean time I will be living in my old room, with some new flair my two kitty babes, Rocket and Rescue. We will stay here till I am more settled with my self and than we will have a n...