Sunday, April 19, 2015

Mom’s Sugar Cookies

I never seem to get these to come out just like mom’s cookies, and I don’t know why. But, again, to be sure I don’t lose the recipe, I wanted to get it down so am posting it on the blog.


1 and ½ cup confectioners’ sugar (powdered sugar)
1 cup butter
1 egg
1 tsp vanilla
½ tsp almond flavoring
2 and ½ cups flour
1 tsp baking soda
1 tsp cream of tartar

Mix sugar and butter. Add eggs and flavorings and mix well. Measure the flour by sifting or using the dip method. Stir in dry ingredients. Refrigerate 2 to 3 hours. Heat the oven to 375 degrees F. Scoop out a handful of dough and roll it out on a lightly floured surface. Cut with cookie cutters and then bake 7 to 8 minutes or until light brown.

Tortellini Soup

I got this recipe from my mother. I am posting it because I have a few recipes I really like, but are on scraps of paper. I want to be sure I don't lose it in the move, so here it is! Grin! 


1 small can of mushrooms
4 cups of chicken broth
2 large skinned chicken breasts
2 cans Italian-style tomatoes cut up
1 block or 8 ounces of cream cheese
1 bag frozen cheese tortellini
1 small bag of spinach

Put all the ingredients, except the tortellini and the spinach in a crock pot on low and cook until the chicken is cooked through and breaks apart easily with a spoon. Add the tortellini and spinach and cook a half hour more. It will seem like too much spinach, but the spinach cooks down quite a lot. Serve.

Monday, April 13, 2015

Hundred People Search

I have an update on the Hundred People Search! I was so busy last week I didn't get to post it. We added two new HPSers to the patient registry. This puts us at 95 to go on the Hundred People Search or H.P.S. Grin! We are still going through the records from the Puerto Rico conference. It has been a hard job for Valarie because some of the handwriting is hard to read. Lesson learned from next time - we want to have a tablet of some kind for people to sign in. I have SO MUCH to blog about, both Network news as my own news, but doing things for my move is top on my list just now. Hope to add more later. 

Sunday, March 29, 2015

Move update: Trying very hard not to lose my mind

The move saga continues. Finding an apartment in Arlington has proven to be a huge job. It would be easier if I were moving like a normal person. The options would be wider. Instead, I’m trying to find an apartment in a very specific price range to qualify for a housing grant. I need something Ryan can get to if he needs to and it can’t have too many stairs (although some are okay.) And then there’s the laundry. I’m trying to get something with a laundry in the building somewhere. I think finding one with a unit in the apartment just isn’t going to happen in my price range.

I think I am going to have to go ahead and go to Arlington and put all my things in storage. This has been pretty upsetting for several reasons. First, it just adds more cost to the move. Second, it means Finley will have to go to my mom. If he doesn’t get shipped soon it will be too hot for it to be safe to ship him.

I have no doubt my mom will do a great job of caring for him, but I hate so much to be parted from him. And then there are all the hours we have spent on his helper dog training! Not using it for too long will set this process back. Plus, it adds the hassle of the whole thing.

Everything would be so much smoother if I could do this move door-to-door, but the thing is I need to get there. I’m very lucky I am doing as well as I am. This could last for years, or it could change on a dime. I’d feel so much better if I were there!

Not having this resolved just causes me so much stress! I’m trying not to be stressed, but easier said than done!

On the progress front, the Salvation Army came and got the couch, two desks and a chair I don’t plan to move. This leaves me with only one living room chair to sit on. I have the table chairs, but they aren’t exactly built for comfort. Finley and I are spending a lot of time sitting on the floor or in the bed! Grin!

Thursday, March 19, 2015

Move Update

Thank you so much for all of the folks who have helped fundraise for me to make this move possible. With your help, and my family chipping in as well, this is going to be possible. I don’t know what I would have done without all of you.

I am now medically cleared to move. We are through the HPS Conference. I have a moving company lined up (unless I decide to go with a plan B) and about half of my things are packed now. I’m scheduling the Salvation Army to come and get the last of the furniture I don’t plan to move including: a couch in very, very, very bad shape, two small bookshelves, a drafting table, a large (and very heavy) desk and probably two bags of other smaller things. The hold up right now is just finding the apartment. We have several leads so I’m really praying we can just line something up and get it done. If we don’t find something very soon, I may go ahead and leave for Virginia and have my mom finish the pack-out on this end.

Boy is moving expensive! There’s the increase in rent, the application fees, the security deposits, the cost of the movers (which pods or not is going to be in the $3,000 neighborhood) – and that’s just the beginning!

I feel stressed out all the time. I just want to get through this and come out on the other end and have my life level out a bit! It’s like pulling off a very large and very sticky band-aid one hair at a time! Let’s just rip that sucker off!!!! Grin!

Sometimes how I am doing changes even in the course of a day. I’ll have a really good day, and then suddenly, out of no where, break into tears. They aren’t specific tears – just sadness about the entire situation.

Even though all kinds of strides are being made so that Finley can come to Virginia, I can’t get rid of this horrible fear that something will happen at the last minute to keep that from becoming so. I love him so much! I’d rather chuck everything I own if it meant I could bring Finley. I worry about him a lot in this process.

I am trying very hard to focus on the things that will be great about moving. Access to public transit and being near Ryan’s family are top on the list. It turns out Finley can even ride the metro with me! WooHoo…how fun is that going to be? We can explore together!

Someday, after I’m settled, I want to have Ryan’s kids over for a slumber party (even if they go home to sleep as they are pretty young and might find a slumber party scary.) I haven’t seen the movie Frozen because I am saving it to watch it with them. I’m sure before long I will have seen this movie a thousand times! We can settle down to watch with everyone in their PJS – the kids, Finley and me! What a picture!

Tuesday, March 17, 2015

A new year for the Hundred People Search!

We are kicking off a new year for the Hundred People Search (HPS) and we've got a great start! We have added three new HPSers to the HPS patient registry. We just have 97 to go! Grin! 

The Hundred People Search (HPS) is a yearly campaign in the Hermansky-Pudlak Syndrome community to encourage those with HPS, and our supporters, to help those with HPS find a diagnosis and get registered. 

This is so important for several reasons! 

First, one of the most dangerous things about having HPS is not knowing it. A recent study (that I have on my list of things to blog about) showed that, on average basically, it takes seven years to get an HPS diagnosis. Too many times over the years we've seen someone, unaware they have HPS, end up in a crisis because they didn't know they had a bleeding disorder. Not knowing doesn't give you the chance to learn about, and do, all the things that can keep you healthier longer and improve your quality of life. It doesn't give you the chance to avoid dangerous bleeds that could have been prevented, or early treatment of GI disease. 

Second, there are things available to help. We now have the first treatment (not a cure) for pulmonary fibrosis. We now have access to lung transplants. There are things one needs to know about treating the bleeding of HPS, and it is a changing picture. 

Third, most primary care physicians, even specialists, aren't even aware of HPS, let alone up to date on the latest developments. For better or worse, it is often up to us to be in the know. If you don't have a diagnosis, you can't even begin to climb and conquer that mountain. 

Fourth, while it may not be for everyone, for many of us there is something therapeutic about being part of the solution. Our future is not a set thing, but it is up to us to change it. It is up to us to work on finding the cure. No one is going to do it for us. They might do it with us, but no one cares about curing HPS quite like the people who are impacted by it every day. 

Wednesday, February 25, 2015

It takes an HPS Village

A few weeks ago Donna and I were communicating with a researcher interested in doing more work with Hermansky-Pudlak Syndrome. During the course of the conversation, he said something that just made my day. I felt like asking him if I could quote him, but I was too polite. Grin! I didn’t want to side track the conversation we were having about research.

But, what he said was so important, I want to share it with HPSers, as well as all of our supporters. He said that one of the reasons he was so eager to work with HPS was that, for a rare disease, the HPS patient community is so well organized. He knows that when he is ready, he will be able to reach the patients he needs to reach quickly.

Wow! Take that in a minute!

I want to share it because he is right. We can reach a lot of our members very quickly because we are so connected as a community. We can do that because of all of you. All of those who have registered with the HPS Network, who check in with the HPS Website, follow us on Twitter, Facebook and Instagram, come to the conferences, go to NIH etc…..all of that has been noticed by a researcher who is pretty new. He hasn’t been a part of our world for many years. It was a huge compliment, but it was a compliment to all of us.

Sometimes I think people feel the things they do are small. They don’t truly appreciate how valuable being a part of the community truly is and what does to promote and accelerate research.

Everyone should take a bow! Keep plugging in in whatever way suits you best. It does matter.

Monday, February 23, 2015

Move Update!

I promised all the people who have helped me raise money for my lung transplant process that I’d keep you updated on this blog, and I’ve done a lousy job of it! Please forgive me.

The thing is I just don’t have the energy I once did. I haven’t had the energy of a “regular person” for some time, but these days it is worse. I plug away at my day and then suddenly, as if hitting a brick wall, I’m done. There is so much to do, that updating the blog isn’t always first on the list.

So, here is where we are on the great move! Medically, I am all ready to go. Whew! That has gone very smoothly so I am greatly relieved that we didn’t have any issues there.

Last week and this week I have been getting estimates from moving companies on moving my things. I’ve sent several loads of things to charity, and have some more things to send as we get closer. I’m not moving a large desk, for example, but wanted to use it until closer to time to go.

If anyone has any advice on bids from nationwide movers, I’d really appreciate it. So far the bids have come in as low as $2,600 and as high as $3,500. There are two more to go, unless I decide to get still more. The difference in the cost seems to be a matter of how you want to do it. There are several pod-like services and they seem to be the cheapest, but their estimates are not guaranteed nor do they come out and actually look at your things. I’ve had a hard time getting answers to questions from them, which makes me a bit nervous. Some do allow you to hire help to load the container, but they don’t seem to be responding to my questions about that. This just makes me nervous.

I like that the van lines send someone to see your stuff, and have insurance, provide the background-checked and bonded labor, and seem to have a mechanism to actually stand by their bid so the sticker shock on the other end isn’t a wide-open thing.

As for the apartment – that has been a long saga. I’ve thought I found something twice, but it hasn’t worked out. It is a long story, but I’ve been sick twice in the last month, which hasn’t helped much. I decided to put apartment hunting aside until I get back from the HPS Conference. That way, if we find something, we are really ready to move and everyone in my family that is helping will be on board.

On the one hand, every day I feel a bit sad to be leaving, yet on the other hand I am sick of having boxes everywhere and my life up in the air. I’m anxious to get this over with and done! I feel like it has been like pulling a Band-Aid off one hair at a time!

I try to keep thinking of the things I’ll be able to do with family when I live closer.

Finally, everyone asks about Fin. Yes, I think he is coming. I have stabilized for now. I don’t know if that will last a month, or year, or a few years – but for now I am perfectly able to care for him. In fact, he makes me stay active on days when it would be very easy to not be motivated. Then there is the emotional support. If you are not a dog person, you might not understand. If you have kids so dogs seem more like pets you might not understand. But, I don’t think mentally I could be getting through all that I have to do to leave if I knew that the day I get on the plane could be the last time I see Fin.

Yesterday I was feeling pretty tired and not well. He just sits with me and keeps me company. I love seeing his face when I wake up, and feeling him against me when I go to sleep. I talk to him all day (yep, I know that sounds crazy.) I’ve always been alone, but I never knew how much it could mean to have that kind of companionship. It is especially important now that I get tired easily and can’t be as social as I once was.

As for Fin’s helper training – it is coming along. Fin is quite good at showing me where the phone is. It cracks me up though, that when I ask him to find the phone, the first place he ALWAYS looks is behind the couch. I don’t think I’ve ever lost the phone behind the couch. I’m not sure why he does that! Grin!

He is getting better at picking up dropped items. I sometimes get a little dizzy when I bend over, so this is useful. The challenge is that his mouth is pretty small, so it has to be something he can pick up. He’s really good at pens! He doesn’t seem to understand that this command can be used anywhere, however. He seems to think it only applies to the office or the couch. Not sure why that is? But, we will work on it.

Lastly, I REALLY want to teach him to not just show me the phone, but to bring it to me. We have gone through a series of things I’ve invented to attach to the handset so he can pick it up. So far, we haven’t hit on the perfect solution. I learned that he doesn’t like to pick up the phone unless the weight is pretty evenly distributed on his mouth. Guess that makes sense. I found a way to attach a rope hoop he could pick up with his teeth, but Fin, being the little guy that he is, decided it was a game to figure out how to get the rope off of the phone. The process continues!

Wednesday, January 28, 2015

Hundred People Search - HPS

Last week we added two new HPSers to the patient registry. I have been so busy I am just now posting it. So, we are at 83 to go on this year's Hundred People Search. Yes, that is behind where we usually are, but we usually pick up around 40 new people when we do the conference in Puerto Rico. This year that didn't happen. But, we are going to Puerto Rico in March (more to come on that.) I should say the Network is going as I'm will not be going. I hope I will be moving. 

Tuesday, January 13, 2015

A photo Fin fix

If you follow me on facebook, you've already seen these. Grin - just had to add to the archive! Grin!