Sunday, October 11, 2015

Hundred People Search

We have added another HPSer to the patient registry. This puts us at 74 to go on this year's Hundred People Search (H.P.S). 

Thursday, October 08, 2015

Health Update

Things are going well after a bumpy period. The good news is I got into the maintenance pulmonary rehabilitation program and so was able to keep my little Inogen concentrator a bit longer (and be more mobile). I am so grateful as it makes a huge difference in my independence and ability to have something more similar to a normal life. I’m also grateful to the pulmonary rehabilitation program at Inova Fairfax. They’ve been awesome!!!!

I had a very nasty upper respiratory infection and double ear infection a few weeks back. That was scary. At this point, any infection in my lungs can cause me to lose ground I don’t get back. I needed to wear oxygen more than is normal for me. Normally I can walk around my apartment without it. When I got the infection, I couldn’t even walk from my bed to the bathroom (a few feet) without oxygen.

Praise be to God I’ve been able to get back as much function as I had before the infection. I’m not sure what my PFTs or CT will show, but as far as what I can tell a functional difference in, we are back to where we were before the infection. That is a huge relief, although the recovery took several weeks.

I know people sometimes think I’m being overzealous about the germs and fearing getting a cold, but this is why. What was for most people a spring cold was very scary and dangerous for me.

Monday, October 05, 2015

Host an HPS Christmas Party!!!

The HPS Network hosts an annual Christmas Concert fundraiser in Oyster Bay the first weekend in December. This year families with HPS from around the world can join the holiday fundraising efforts by signing up to host an HPS Christmas Concert event of their own! 

A professional broadcast quality DVD of the concert in Oyster Bay will be produced and ready to ship out by Dec. 9th. The DVD can be played at a fundraising event anywhere during the holiday season. If you let the HPS Network know you are planning an event by Nov. 24th, we will put a shout out recognition to your group on the DVD. 

In the past HPS families have done things such as: 
Host a Christmas tree decorating party while playing the concert. A basket for donations was simply placed at the front door. 
A children’s hot chocolate party. The DVD was played for the children while they sipped hot chocolate. The kids brought spare change to put in a jar at the event. 

Make it easy and simple, or get creative! When your event is complete, simply send the proceeds to the HPS Network office. Call (516) 922 4022 with the name of your event and your location. Give us your address as well so we can ship the DVD to you.

Hundred People Search Update

We've added a new HPSer to the patient registry. This puts us at 75 to go on the Hundred People Search (HPS). 

Saturday, September 26, 2015

Hundred People Search Update

We have added three more HPSers to the patient registry. I've been very sick, so I've been offline more than a week. One was one from week before last I never got to add, and two are from this past week. This puts us at 76 to go on the Hundred People Search. 

Monday, September 14, 2015

Health Update

This is going to be a very busy couple of weeks. On Wednesday I graduate from pulmonary rehabilitation. The time went by so fast!!!! I have really enjoyed the program. Perhaps for the first time ever, I actually enjoyed exercise! I didn’t feel like I stuck out like a sore thumb amid the gym bunnies. I had help using the equipment without feeling like everyone was watching me (in a staring kind of way.) I felt totally safe pushing myself and I had access to all the oxygen I needed.

My biggest fear was that as I improved and could push myself harder, I needed more oxygen on the treadmill. The other equipment I was fine at three liters, but I need between six and eight liters to go full tilt on the treadmill.

My wonderful little concentrator that has given me more freedom since ditching the refill tanks only goes to four liters. I was really afraid they’d tell me I had to ditch my little concentrator for the tanks again.

Truth is, that day is coming no matter what. Yet, here I am with access to public transit that allows me to go anywhere, whenever I want, and just as I was beginning to enjoy real freedom, the refill tanks would take some of that freedom away. Oh yes, there are all kinds of creative ways to figure out how to haul around oxygen tanks, but you still have to go somewhere to fill them. You can’t plug them in while you’re sitting somewhere. And, you still have to physically carry enough oxygen for the day, plus enough to handle plans going awry.

Insurance does not allow you to have two systems. I don’t have the money to buy the concentrator, especially when I don’t know if it will meet my needs for another month, another six months or another year? Who knows? It is a miracle that my oxygen needs haven’t increased more in the last year.

I am so grateful to Inova Fairfax and the pulmonary rehab program! They have truly been my advocates. They have found a way for me to do a maintenance program so that I can continue to work out really hard, but keep my current system (for now) for my day-to-day normal stuff. This wasn’t going to be financially possible for me until I am actually listed for a lung…but they listened to me explain my situation and really worked to make a solution happen.

I have been so blessed so far in this journey. I have lots of friends who have given so much to help me get moved and get situated. I have been blessed to find the perfect place to live (minus a few bumps I’ll blog about another time). I have been blessed that I’ve been able to keep Finley with me.

Honestly, I don’t know how I would have gotten through this summer without him. Besides the helper dog things he does for me, he is my constant companion and distraction when I’m feeling discouraged or depressed. And, he makes me active even on the days when I don’t feel like it.

Things just seem to be falling together. It makes me hopeful that all is happening just as it is meant to be.

Thank you EVERYONE who has supported me with your time, talent, finances, and prayers. I wouldn’t have a chance at this without you

Tuesday, September 08, 2015

Hundred People Search

We have another new member - this puts us at 79 for the Hundred People Search. 

Friday, August 28, 2015

My new neighborhood

This is the back side of my building. My apartment (from the back) is on the second floor. Here it is covered by the trees. 
Our street 

Fin's Flexi-leash field

Park near our house
Front of our apartment building - we are the first floor (from the front) on the right. We love the shade! 

In order to keep all of you that are helping me in this journey, or helping support the HPS community in general, I’m trying an experiment with blogging. I’m going to try to write several blog posts when I am able to blog, and then schedule the posts to stagger over a few days. Just FYI, lest you think I suddenly have more time to blog! Grin!

One of the things I’ve been eager to blog about, is my new neighborhood. I do miss my old neighborhood a lot. I miss the people and Homers. There just isn’t a comparable place here. Here, when you do find a little coffee shop, they don’t exactly go out of their way to make it a great place to stay a while and work. This is understandable given the economics here. Rent is so expensive that a coffee shop needs a good turnover to make the economics work. So, the tables are small. They don’t offer wifi generally, and there aren’t places to plug in.

That being said, I do very much like my new neighborhood. It has a lot of things to offer that are just different than the old neighborhood.

There is a large park only a half a block from our apartment. It is such a great place to walk Fin! It is also a great place to work on his social training as the park is always busy with people. I am amazed at how well used parks are here in Arlington. It isn’t like in Overland Park where you can go to a park during the day and hardly see another person.

Behind our building is a large green space no one seems to use. At one time, I can tell people hung their laundry out here – but now it is just a large grassy spot. I bought a flexi-leash for Fin that is 23 feet long. (You don’t use these types of leashes with service animals generally as it doesn’t give you as much quick control over the dog.) On the days when I am unable to take Fin for a long walk, we walk up and down this green space and Fin can run on his flexi-leash. He loves it! (I think he really misses his porch though.)

About a half mile away there are a number of little neighborhood shops, a library and a post office. I am so thrilled to have a post office so close by. It is a major hassle to have to lug packages to the post office. I hope to paint more and try to sell more…and a post office is important to that endeavor. The library is a place I can go and work. I am amazed at how crowded it is! It is the neighborhood version of Homers, only there is no coffee and you can’t chat as much. Yet, there are the work-at-home regulars there just like me.

My part of the neighborhood is mostly a bunch of apartment buildings from the 1940s. They generally have six to nine units in each building. Around us there is a lovely neighborhood.

There have been so many times I’ve wanted to take photos of the houses! They aren’t large by Midwest standards, but they are so well kept up and many have such beautiful yards! Many have lots and lots of beautiful gardens accented by paths and gates. I don’t take the photos only because I wonder if people would think I was strange. Grin!

I am looking forward to fall because there are so many large hardwood trees. I think the colors of the leaves will be so pretty.

Thursday, August 27, 2015

Hundred People Search

We've added another HPSer to the registry. I was just cleaning out e-mails and found one I had missed from the office! This puts us at 80 to go on the hundred people search! 

Monday, August 24, 2015

Hundred People Search

Today we added a new member to the patient registry. This puts us at 81 to go on this year's hundred people search.