Don't call us, we'll call you....

Hello all,
Well, I finally received a phone call from my financial liason ( after many unsuccessful phone calls instantly transferring us immediately to voice mail). Basically, we are still in negotiations with our insurance company. Dr. Burt has to submit further test results to them and i will possibly have to return to the hospital for further testing. Lucky me.
I came home this afternoon to find my backyard had been landscaped! John and Susan came over and worked in my yard all afternoon. It has been difficult for me to hold garden tools with my hands and cutting down shrubbery is almost impossible. I don't know how to thank them enough!
I gained two pounds this week, now i only hope i can keep this up.

good game, good food, great friends....

Well, Sunday was our first soccer game of the season and we were defeated 6-1. Not a good start to the season, but these things do happen. My team showed a lot of heart, it's only the first game. I have a good team. Mikey played inside on offense and he did a great job.
I felt exhausted as usual and it seems like it's increasingly getting worse as the days go by, but I'm holding strong. Susan and John payed us a visit. It's always great to see them. They truly know how to make you forget your troubles. I was feeling pretty depressed about my condition and they really boosted my spirits ( as I often do for John. I always tell him there's no charge for my therapy!)
Still waiting to hear from the hospital. hopefully Donna will give them a call on Friday.

coaching Readington baseball 2008 season

the sick house.....

Well, it's official, my kids have the stomach bug. Amanda was up all night. I'm just waiting and wondering when it's going to hit me and Donna. Donna is really great about sterilizing everything. I think she sleeps with that can of lysol next to her! Ironically though, she is always the one that ends up getting sick and I always seem to dodge the bullet. I hope I'm that lucky this time I don't think my body can handle anymore weight loss. I'm down to 155 and I would really like to put on at least 10 more pounds before I leave for the transplant. I have always been the same weight for as long as I can remember, a fit 175. I was alway a jogger and would run almost every day when I was healthy.I played sports and at one point i was playing softball almost 6 nights a week. When Dr. Burt examined me in Chicago he told me that I was very fortunate i was athletic, because i have incredible lung capacity compared to the extensive damage that I have in my lungs. Thanks everyone for your posts, emails and phone calls of support they really do mean alot to me. Sorry these posts are so spread apart, (as i was reminded by Paul) but as soon as I hear anymore news from the hospital I will be posting more frequently. p.s. Paul have a great trip and stay out of the sun!

I loveeeee black jelly beans

Easter was a great day. It was filled with family and lots of good food. This was the first year that I couldn't participate in our annual Easter egg hunt because I wasn't feeling up to it. My children are extremely competitive and were actually relieved that I would not be participating (I always win), but wait until next year watch out. The highlight of the day for Amanda was tossing black jelly beans at me while I scooped them up and ate them like a chipmunk. mmm those black jelly beans. We are still waiting to hear from the financial liaison. We received an e-mail from the hospital with her name but were told not to contact her for at least two weeks. She probably wouldn't know anything yet anyway. Mikey and I are getting extremely excited for spring soccer season to start. Practices have been a challenge for me. I come home exhausted. Our first game is approaching rapidly and it looks like we have a great team this year.

April get warm!

Today was a good day. Donna made about a million phone calls and finally settled on a condo,the Oakwood apartments, a block from the hospital. We still haven't heard from our financial liaison, who will be fighting our insurance company for some sort of payment. We are supposed to know something in the next few weeks. My daughter's friend, our neighbor, started fundraising at her college, West Chester University. I was so humbled when she gave me an envelope donated by the students. Even though its April its still really cold here in Jersey, and it snowed today. It makes it very difficult for me to function fully with my hands because of my raynauds. Hopefully we will have nice weather for Easter.

My first post

My family and I received wonderful news this past week that I am a candidate to undergo an autologous stem cell transplant. As I prepare for this journey to Chicago, I invite everyone to join me through this blog site as I kick Scleroderma in the butt! I am a fighter and I never give up.