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!

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


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!

Friday, December 12, 2014

The job of chronic illness

I mentioned a few days ago that when I had a few moments, I would blog about my life on hold. People who have never encountered long-term health issues have no understanding or appreciation of just how much work it takes to deal with “medical stuff.” I estimate this week alone I’ve spent seven hours on hold with medical supply companies, insurance, doctors’ offices and pharmacies. This is not unusual. In fact, it is a pretty average week. Some weeks it takes more time than this. It also does not include the time I was at a medical appointment on Tuesday. This is just time on hold on the phone!

If what you need can’t be bought at CVS or Walgreens, it can get complicated. Currently I have three pharmacies and two medical supply companies in my world. It often feels as though none of them have ever heard the term, customer service.

My oxygen supply company is the worst in this regard. If they weren’t bad enough, they don’t have hold music for that 40 plus minutes or more you’re on hold waiting for a human. Instead, they play a recording thanking me for calling and telling me how much they value my time! It just makes me increasingly angrier as I listen to it because clearly they do not value my time. It’s bad enough I’m on hold that long. Don’t rub my nose in it!

When you vent about this, often you get a lot of well-meaning comments suggesting you go to the media or lodge a complaint, but the trouble is the comments often come from people who do not understand how these services work.

Typically, (especially with medical equipment and supplies) you don’t get to choose the company, nor are you really the company’s customer (even if you are.) They get contracts from insurance companies or Medicare to be the provider for your area. Your personal opinion, choice or satisfaction is of little concern.

If a company doesn’t keep enough technicians on hand to reply to problems in a timely way, doesn’t staff customer service phones, and doesn’t stock the most current choices in care, it is pretty easy to have the lowest bid.

I am the real problem. To fight this system is a lot more involved than a well-placed call to someone in the media. It is a systemic problem and needs a systemic fix. (And by this, I’m talking about something way beyond the typical health care reform debate.) But, if you’re the one sick enough to be in need of these services, you often really don’t have the energy or time to take on that kind of fight.

I have so many battles on my plate, it is hard to fight them all.

So, this little blog post is really more of a vent and a way to voice the kinds of day-to-day issues people like me deal with just to have the medicine, equipment and care, we need to seem as normal as possible.

Wednesday, December 10, 2014

H.P.S. Hundred People Search ditto

Murphy's law - just when I post the update about the Hundred People Search - H.P.S. - I get another e-mail that we just added another person today, so that puts us at 85 now! Okay, returning to your regularly scheduled blog....grin!