I am starting to feel like part of this wonderful community here on the stream.. I am very happy that I have been receivng comments on my blog. I've learned how to post photos and how to change my background, and now for th first time: Friday Fun Fact!

1. My children mean the world to me, but I guess you already figured that out from my last couple of posts.

2. My father owned the apartment building I grew up in and I lived there until I was 33 years old and moved to Florida (I moved out twice for short periods of time).

3. I grew up in Queens, NY and have seen and experienced many horrible things. But I think that’s what made me so strong.

4. I don’t like to cook but I love to eat! My favorite part of a meal is dessert, I love chocolate and sweets of any kind.

5. I am basically an easy going person, I try hard to remain upbeat and focus on the positive.

 

My son will be coming to visit me at the end of the month also. He's 24 and a computer science major. We plan on spending many lazy days at the beach. Isn't summertime wonderful?

My older daughter works and goes to school in NY. She will be here 1 week from today, I haven't seen her since Jan., so I am really excited.  She is a wonderful girl and I am amazed at how mature and responsible she is.  Nothing like I was at her age, she's 22.

When you were a little kid, what did you want to be when you grew up?
How close did you come to achieving it?

I was the oldest of three, and my little brother had health problems and had to spend a lot of time in bed. I loved to read to him, and teach him things and play with him. So I wanted to be a teacher, and eventually I became one.

My younger daughter liked playing with her toy kitchen, for her the best part was asking me what I wanted and then bringing it to me. So she wanted to be a waitress. I told her that was a wonderful idea, she could be a waitress, while she was going to college.

I was only able to work for 2 days in 2003, the scleroderma was progrssing quickly. My skin had gotten very tight and hard and it was difficult to bend my joints. I had trouble using my hands, I couldn’t turn door knobs, or button my clothes or turn the ignition to start my car. My 12 year old daughter learned to do laundry and prepare simple meals because I could no longer do it myself. Soon I couldn’t walk more than a few feet. Thank God for my daughter’s strength. She was able to pick up the wheelchair and put it into the trunk of the car.

I applied for disability, but it takes 5 months for you to get any money, luckily I had enough savings to pay my mortgage, but I couldn’t make the car payment, so it got repossessed. A friend came to stay with us to stay with my daughter when I was in the hospital, so she bought all the food and paid the electric and phone bills.

In the meantime, my boyfriend asked me to marry him and I said yes. Much of that time is a blur, so much was happening at once. My boyfriend suggested that I move in with him after the school year ended, so I sold my house.
My condition continued to deteriorate. I could not dress myself, I was so weak I couldn’t even hold a brush up to my hair. I hated that my boyfriend had to cut my toenails, I couldn’t reach them. I had lost 40 lbs. and was still having trouble holding food down. My kidneys failed and I was in heart failure, there was nothing they could do for me, I was dying. I made arrangements for my daughter to spend the summer with my sister and her family in PA. Before she left, I had the most difficult conversation of my life. I told her that I might die. I didn’t want her to be shocked if it happened so I felt I had to tell her. I told her that I would always be with her and would always love her. We both fought back the tears, she was so brave. My boyfriend took us to the airport and as I waved goodbye from my wheelchair, I realized that I might never see her again.

Two weeks later I was back in the hospital, I kept falling asleep, and then my body would jump. I had trouble staying still. I started losing my ability to speak. I could still think but I couldn’t get the words out, I couldn’t remember what word to use. The doctors notified my next of kin, and told that that I could go at any time. My boyfriend refused to believe I was dying, he insisted he wasn’t going to lose me. He didn’t want me to give up hope, so he suggested we get married. My whole family came down from NY and PA and we got married in the cardiac ICU.

After 2 weeks I was released from the hospital, the scleroderma had gone into remission and the symptoms were slowly disappearing.