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! 

Move update, and prayer request

Okay, so have you been wondering what is happening with my plans to move? Me too! Grin! So, here’s the current plan, but keep in mind originally I was trying to move by July, so the plan changes.

I should be all cleared to move from a medical standpoint by mid-February. I have found an apartment complex that seems to be an answer to all of my prayers – now if a unit will just become available when I need it!

The complex is within walking distance of Ryan and Sara’s house, so it would be so much easier for them to come over and help when I need it. That is a HUGE plus! It is also a Fin friendly place so that won’t be a problem. It is also close to a grocery store, a CVS, a Petco, a Starbucks and a Thai restaurant. What else could a girl want? It is not close to the metro, but it is right on a bus line that goes to the metro. Since I am not doing a daily commute, I think right now being close to Ryan’s house and things like the pharmacy and grocery are more important.



The trick, and thus the prayer request, is that a unit will become open for any time after mid-March on the ground or first floor. Stairs are not my friend these days. I don’t like thinking of God like some kind of wish granting genie. My prayers are usually more along the lines of help for me to deal with whatever is God’s will – but honestly, I must confess, I’m praying for this. To get something lined up and to be able to firm up the plans from there would be so helpful just now.

Thursday, January 08, 2015

Hundred People Search Update

We've added another HPSer to the patient registry. We are now at 85 to go this year. That is way behind where we usually are, but we have focused more on science this year and less on outreach. It is important to get the word out about HPS though, especially now with a new drug in the picture. 

Wednesday, January 07, 2015

Finley in action!

video
Tomorrow is a check up day so hopefully I will have more of an update to share. In the meantime, here's another Finley video clip! 

Saturday, January 03, 2015

It happened to me

I’ve had friends with Hermansky-Pudlak Syndrome, or other lung diseases, for 14 years now. Over the years friends that found themselves on oxygen have told me stories about overhearing comments in public, or even from other friends, about them. The comments were along the lines of - they’re on oxygen because they were a smoker.

Recently, it happened to me, not once but twice, in the same week. I’m not sure how to feel about it.

The first time was at the grocery store. I was standing in line, and a mother said to her 12ish looking daughter, “See that lady. That’s what happens if you smoke.” A week later I was in the car with friends complaining about my latest saga with the oxygen company. One of the friends remarked, “I’m glad I’m not a smoker.”

They are two very different comments with lots of different implications. The fact is, however, when many people see someone on oxygen, they often assume it is “their fault.” Living with chronic or life limiting illness is a minefield of guilt and judgment from others. The last thing any of us need, smokers or not, is more judgment and guilt heaped on an already difficult situation.

I find myself feeling a little self-righteous wanting to answer back – but I’ve NEVER smoked. Never even tried it! This wasn’t anyone’s fault. It has nothing to do with blame or threats or behavior. How dare you judge me when you have no idea what is going on with me medically! Does that make me just as judgmental as those making comments about me?

On the other hand, I’m all for encouraging people not to smoke. When I walk by someone smoking, I often wonder what they think when they look at me, cannula and all? Do they make a connection? Do they understand what life is like being tied to the leash of oxygen? Do they understand how it feels to not be able to get a breath? They’ve got healthy lungs and probably don’t have genes that will land them on oxygen at 41. Do they understand the risk they are taking, or the potential fallout?

Lastly, the comments upset me because of the wider implication they have for distribution of medical research dollars. Lung diseases of all kinds fall way behind research of other organ systems. We don’t have a little red dress campaign for the lungs. Everyone knows about the importance of cholesterol numbers, or blood pressure numbers, but when is the last time anyone not complaining of breathing trouble had a lung checkup? How many people know what PFTs (pulmonary function tests) are or what a good oxygen saturation number should be?

We did such a fantastic job with smoking cessation campaigns that in the process it feels to some like me that we’ve demonized lung disease in general. It feels like the movers and shakers of the world are somehow not moved to care about those with all kinds of lung diseases because, “that’s what happens when you smoke.” Those people somehow did it to themselves.

In reality, lung diseases, like any disease in the body, is so much more complicated than that. We all need just as much help unraveling the puzzles. We need to transition from anti-smoking to promoting good lung health awareness.

Tuesday, December 30, 2014

test - posting video

video

A while back I tried to post a video of Finley helping me find the phone. It didn't work, so I'm trying it again. 

Last Christmas in Kansas




This past Christmas will probably be my last Christmas in Kansas. It was a much understated affair – grin! Honestly, it was a nice day, even though we didn’t have a big tree, lots of decorations and presents or a huge meal. My Christmas tree was on its last legs several years ago, so it was one of the items pitched in the big purge to move. I gave away almost all of my Christmas decorations. I’m just not sure that when I get to Virginia, I’m going to have a place to store them.

Mom was here, however, with Gerda, her dachshund. We just spent a few days together just visiting, playing with the dogs, and watching movies. Things have been so hectic and up in the air. I’ve just gotten over a horrible sinus infection. It was actually quite a wonderful thing to have nothing that had to be done right away. I unplugged from the Internet for a few days and just enjoyed some peaceful time with mom.

Finley got a squirrel for Christmas. We have so many squirrels around our apartment complex because we have a lot of trees. Looking out the window and watching the squirrels and the birds is like dog TV for Finley. He spends hours transfixed watching out the windows. If one should happen to venture onto his porch, or stand on the fence, Finley goes bananas.



At night Finley dreams in his sleep. He moves his legs, wags his tail and even “talks” in his sleep making these little growl and bark sounds. I imagine that he’s dreaming about those birds and squirrels on his porch, and what he might do to them if he caught one. In reality, I imagine he wouldn’t have a clue what to do with them if he were lucky enough to catch one!