Thursday, May 21, 2015

Settling in….finding the new normal

My dad and his wife have been gone a few days now and gradually Fin and I are working into the rhythm of a new normal. I think it might take months to find a home for everything. If I did nothing but put things away, it would probably be finished in a few days, but I have so much else to do! There is so much ahead that if I think about it, it is just overwhelming. So, I’ve been putting tasks on small note cards. I pull one out, work on it until it is finished, and then enjoy the satisfaction of ripping up the card. It might not be a permanent ritual, but it is working for now.

My allergies have been horrible! My eyes water. My nose is stuffy and running. I’m coughing again. I itch from head to toe. I’ve been truly ill in my life, and I’m here to tell you allergies can make you down right miserable! The four allergy medications and three inhalers I’m using to keep things manageable do an okay job, but I’m not sure if that’s because they help, or if they just make me so tired and loopy I don’t care anymore.

This is not a phenomenon unique to Virginia. Ever since I was a small child, and no matter where we lived, I go through this every May to mid-June. Just when I think I can’t live like this anymore and am willing to start trying something more drastic, the allergies greatly improve and we’re through them for another year.

Today it is raining and I hope that the gentle soothing rain will help to pound down the pollen.

Fin and I would like to do more exploring in the neighborhood, but the allergies are preventing long and not-entirely-necessary adventures from home. He is doing much better and seems to be adjusting, but I know he needs longer walks – especially now that he doesn’t have a back porch to sniff and guard.

Perhaps the rain will give us a respite this afternoon. We are both hoping.

Tuesday, May 19, 2015

We Are Here! Settling in Arlington

This past month has been nothing short of a saga rolled into an odyssey. I have so much to blog about it isn’t even funny! I had wanted to blog along the way, but by the time I finished the move-related tasks of the day, I was simply too tired.

Part of the move I didn’t want to blog about until we were through it because being public about it, or publicly critical in any way, could have jeopardized the people who were trying to quietly help me.

So, needless to say, I have a lot of stories to tell. But, for right now, I just want to post to say Fin and I are well and safely in our new apartment in Arlington Va. The apartment, as I expected, is very small – just 540 square feet. It is the size of the apartment I lived in when I was first in Kansas City. The problem is back then I was 22ish, and owned almost nothing. Now, I’m 41 going on 42 and I have stuff! I gave a LOT of things away as I was leaving, had various charities come to get bags and boxes of things, as well as furniture. Mom made three trips of things to her house that were sentimental, but that I feared I didn’t have room for here. Still, I’m going to have to get rid of even more.

We only have three small closets and no storage locker here. The closets are about two-thirds the size of my coat closet in Kansas. The clothes are so thick in them that you can’t easily flip through and everything wrinkles. Because I essentially only have two rooms, I’m finding that I have too many lamps and tables. Not knowing what the future holds, and so mindful of the cost of buying new things, I would ordinarily like to save these things. Here, there is no room to save a single box, let alone lamps and tables.

I think it will take a while to downsize to the point that I feel comfortable here, and not stuffed in like a foot in a shoe two sizes too small.

Already I am missing Kansas too.

Our new neighborhood has its own collection of small businesses and stores in easy walking distance. But, there is no replacement so far for Homers. Man do I miss Homers!!! There are actually three places I can walk to for a latte, but none really have much of a place to sit for very long.

While the coffee was good at Homers, it wasn’t the coffee that made it such a special place. It was the community that built up around such a popular and comfortable neighborhood hangout.

I’ve worked from home for some time now and Homers was like having an office of co-workers without the actual normal job. I got to know the other people that came frequently in the afternoon to get out of their home offices as well – to be with other humans. We got so we sometimes worked together. An insurance agent helped me when I was trying to figure out health insurance, and I helped him with a brochure for his clients.

While there is a definite sense of neighborhood here, I haven’t yet figured out how to plug into it on a personal and relationship building way. Perhaps it will come as I settle in, but I’m already missing this.

Sunday, April 26, 2015

Hundred People Search Update

I have been so busy working on the move, that I haven't updated this for a bit. We have three new HPSers on the patient registry. So far this year, most of our new people are coming from outside the US - an interesting trend. This puts us at 91 to go for this year's Hundred People Search (H.P.S.). 

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.