Thursday, July 09, 2015

Hundred People Search Update

Just a quick update this time - we added another HPSer to the patient registry this week. This puts us now at 87 to go on the Hundred People Search (H.P.S.). 

Tuesday, June 30, 2015

Hundred People Search Update

This past week we added three new HPSers to the patient registry. This leaves 88 to go on this year's Hundred People Search. The search for those affected by HPS is more important than ever. Not only is it vital that the bleeding disorder of HPS is accurately diagnosed, but now there is a therapy for the lungs as well. Keep up the outreach everyone. 

Tuesday, June 09, 2015

Fin's new window

For all the Fin fans out there! Fin loves looking out the window and keeping an eye on everything. Here he is looking out the front of our apartment at the street. It's Fin TV! He's got another window in the back, but it isn't as exciting as the window in the front. 

Apartment hunting

There were a lot of things that came up through this process that I wanted to record, not so much for the vent factor (although I could have used that), but because I wanted to pass along the thoughts to anyone else with HPS that might be looking at the same journey down the road.

I grew up as a military kid. In my early adult life I moved every year or two. Since I moved to Danish Village, however, I hadn’t moved for 14 years. I’d lived in Kansas City longer than that. Boy was I out of practice when it came to moving and apartment hunting!

Finding an apartment when you are ill, on disability, and moving across the country, is an entirely different animal than what I had done in the past. It wasn’t moving across town. I didn’t really have enough income to impress potential landlords or the promise of a great new job that was sure to provide that impressive and comforting income.

Poor Ryan and Sara, my brother and sister-in-law, had to investigate the apartments. I know that was extra work in their already chaotic lives. Then there was Finley. Being able to keep him, at this point in my illness, was a must. Although I have the necessary paperwork for his service dog status, there are so many people passing off a pet as a service animal, that I found many landlords just shut down at the mention of a dog. The fact that he’s a working dog didn’t seem to matter. While I’m all for being an advocate, the thing is right now I have so many battles to fight, that even if I was in the right, I didn’t want to have to fight that one on top of it all. I wanted a dog-friendly landlord.

I can’t say thank you enough to everyone who was praying for me to find just the right apartment. I think God provided, although he didn’t just let the apartment fall in my lap.

We found an apartment on Zillow. Ryan went to see it and skyped me on the phone so that I could see it as well. It was small, but what isn’t in Arlington VA in my price range? It had almost everything I wanted, and even some things I wasn’t sure I’d be able to find.

It is close to Ryan and Sara’s house, so if they need to come over to help me, or pick me up, it isn’t a huge and timely distance. It had an electric stove, something I didn’t think I would find. It is on the first floor. I was thinking I’d be lucky to find a place with a laundry that just had one flight of stairs. This building is built on a hill and there’s a wheelchair accessible apartment in the basement. This means that there is a ramp coming up from the back of the building where the laundry is to the front where my apartment is – fantastic. And, the building is dog friendly. In fact, Fin now has a few new friends.

Getting the apartment, however, was a saga I was not expecting.

This unit is a designated “affordable housing” unit. This means that you can’t make over a certain amount and still live here. No problem! My bigger problem was that I don’t even make the minimum amount. Ryan and Sara had to co-sign. There is a housing grant program here that I have applied for that will help cover some of the rent. I couldn’t apply, however, until I had a lease in my name. They couldn’t give me a letter of eligibility because until I moved, I was not a resident of Arlington. Living with Ryan and Sara, even for a bit, wasn’t really a solution technically, because Ryan and I are blood relations, and thus if I was living with him, his income would be considered. Lastly, to come here to look and live with Ryan and Sara would mean that Finley would have to go to my mother for the summer. That was a huge problem. It would mean just that more expense getting him here. Also, I’ve been training Finley as an assistance dog. That is a special relationship and it is training that takes hours and hours of time. If he spent the summer with my mom, it would be like starting over. So, ideally, I wanted to have a place rented so I could go door to door.

That was looking impossible. I was so upset and stressed out. This was the last apartment we were going to apply for before I just got on a plane and came (without Finley).

The application process was an eye opener for me. I had never before had to live in a place with subsidized rent or income restrictions. The application was 11 pages long. It asked about everything, and I do mean just about everything. I was just lucky that the company let me apply for the apartment when I wasn’t here yet. Many would not.

I had a lot riding on that apartment application, thus I was a nervous wreck the two weeks it took for the application to be processed.

I had to sign an affidavit that all the information was correct, and get every page, and the affidavit (in addition to the sworn statement on the application) notarized. But, it didn’t stop there. About every second day they would call to let me know they needed an affidavit about some other part of the application done specifically for certain things, and they had to be notarized. If I couldn’t comply by the end of the day, they would terminate my application. The apartments only had a general e-mail and it seemed like half my e-mails never went through, or the right person never saw them.

I think I walked about 35 miles in those two weeks just going up and down Metcalf to fax, overnight and notarize things. I know if my Kansas friends are reading this, they’re saying, why didn’t you call me? The reason is the time windows were always so small, and every day there was something new. You all have jobs and lives! Grin!

But, here we are in our apartment. Now we are on to the next saga – applying for an Arlington Housing Grant. I just got a letter in the mail today with a long list of additional documentation that they would like to see. Here we go! Groan!

More later about the new neighborhood. To other HPSers who might find themselves in similar circumstances trying to get a lung transplant – if you have to get financial help to afford a place to live, remember that finding the apartment, and then getting that assistance, takes time! Don’t wait until you don’t have any time left.

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.