Skip to main content

Health Update: The news is in – a plan is forming

I heard the news I was waiting for and now I can begin to target a move schedule! Yippee!!! I still have to sit down with my team and look at the calendar and make sure we are all on the same page, but I think it is looking like I’ll be free to leave the Kansas City area in February. The catch is this is a horrible time of year to try to find a low-rent, ground floor or elevator, and hopefully dog friendly apartment. That’s a really tall order even during the best time of the year for the apartment market.

So, we will see where we are at in February. If things are unchanged, then we don’t have to rush. If things start to change quickly again, then the plan is scrapped and we do whatever we have to do. If things seem to continue to change, but at a slow rate, then perhaps some of the wish list for the apartment will have to go to the wayside just to get myself there.

I am a planner. I don’t like having things up in the air. These last few months have been so, so, so stressful!!! Not just for me, but also for my family!

Last night my body literally ached – I think just from finally relaxing a bit and letting some of the tension go. I have a zillion things I need to do, but Finley and I had a little celebration. I got a people treat (been on a diet to lose weight for the lung transplant) and Finley got a special dog treat. We watched movies together until time for bed. It was so nice!

This morning we slept in, and then went for a four-mile walk. I need to clean house and I have a ton of network stuff to do, but it feels so good not to have this panic just under the surface that at any moment I’m going to have to pick up in a rush and move.

I’ve done a lot of packing already and am sort of at the point where I couldn’t pack much more without knowing when the move was going to happen. After all, if I keep working here for several more months, then packing up my office isn’t really helpful just now.

I’m going to miss having a dedicated office. There is no way I can afford a two-bedroom apartment in Arlington. I’ll be lucky if I can find a one-bedroom I can afford with housing help. I’ve loved having a room with a door I could close to separate my work life from my personal life. I’ve loved having a place where I could leave my painting materials etc. set up all the time so I could paint or work on crafts whenever l liked. Work and crafts can look so messy that having them all in one space with a door you can close has been a welcome luxury. It’s a luxury that’s days are numbered! Grin!

Still, I’m feeling so grateful right now that it seems like a small thing. I’m so grateful for recent medical reports that are not worse than those in May. I’m grateful for all the family and friends who have done so much to help me do what I need to do to make this all happen.

So, for now, I’m still in the Kansas City area for a few more months.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect