Exceptional Family Member Party

I am so grateful to the folks at Lincoln Military Housing for hosting a Christmas party for those of us who are EFMP (Exceptional Family Member Program). The party was held at the Admiral Kidd Club on the Sub base on Point Loma in San Diego. They had a wonderful roast beef dinner, a candy bar for the kids, and Santa even made an appearance! The group also gave each child in attendance a Christmas gift or two.

Really, I'm astonished and pleasantly amazed. Lincoln did an outstanding job of making those of us with special needs in our families feel respected and cared for. For one night, no one judged, no one asked "what's your disease?" and no one wondered if they belonged. We all belonged. Every family in attendance had a reason to be there, and it yet that reason wasn't celebrated, berated, or otherwise discussed. It was a night of food, fun, and celebration of the season.

To Lincoln Military housing, you all did more than I would have imagined possible. Truly, you went above and beyond the call. Tonight we didn't worry about cystic fibrosis...we just had fun. THANK YOU!

The best Thalassemia blog

...is actually in Pakistan!

I’ve been conducting a search lately to find the best blogs on autosomal recessive genetic diseases. Naturally, there are many good websites for all of these diseases. All one has to do is look at Wikipedia to find a clearinghouse of research/awareness websites.

Blogging is a different animal though, and I’m still working on a comprehensive list of blogs for the Autosomal Recessive Disease Spectrum (ARDS). However, while you wait on that list to be fully populated, take a look at Thalassemia Free Pakistan. It is quite possibly the most active blog around dealing with the disease. Here’s why I like it:

1. They have a mission: The title itself tells you everything. Yet while it’s goal is to rid Pakistan of Thalassemia, the information contained on the blog can benefit anyone dealing with the disease.

2. It is well-organized: It is clean, sharp, and organized. I liked the layout of the blog and how the writing is put out to the audience.

3. They have a story: The original creator of the site (Mr. Salman Mehmood) passed away recently. This tells you two things about the story behind this blog. Number one is that they have a reason to fight against the disease because the creator suffered with it. Secondly, they now have a mission to keep it from killing anyone else. I hate to use the word martyr regarding a disease, but the fact is that a man who gives his life fighting to free an entire country of a disease is a cause almost anyone can get behind. Mr. Mehmood's sister, Ayesha (also a Thalassemia patient) now heads up the efforts at TFPak.

So, if you have happened by the Strides blog because you did a Google search on Thalassemia, then you are welcome to glean what you can from this blog, but may I happily point you in the direction of Thalassemia Free Pakistan? You’ll find so much more valuable information there. I would be remiss if I didn’t recommend it. And I heartily do!

Asking repeat givers

As you know, my family is involved in Great Strides each year. We have had a good amount of success for small-timers. However, I've reached a delima. As I prepare for the Carlsbad Half Marathon, I find myself wondering about asking people who donated to this year's Great Strides to donate to the upcoming half marathon.

Now, I've only had this happen in one case. I'm doing my best to keep that from happening on a grand scale. I'm trying my best to ask people who didn't, or probably won't, give to the Great Strides campaign. But is that a good attitude? Are people on your donor lists generally willing to give more than once a year to your campaigns? Or do you keep the different projects separate?

I'd love to hear your comments. Thank you for the help!

Don't Give up on God

When bad things happen, some of us give up on God, or worse yet, get angry with him. If you have a faith (and I speak from the Christian faith), then you simply cannot give up when you hear that you have, or that your child has, cystic fibrosis.


You may ask how we handled the news.

Alicia and I had no idea what to think when Doctor W. told us that our daughter had cystic fibrosis. We didn't even know what that meant, much less what we should think. We were in awe. When we got home, Alicia did what she does best…she researched CF until she had some of her basic questions answered. I did what I do best…beg people to pray for us. I used vital information that Alicia found to help promote our need for prayer. And it worked. For the first few weeks of Sam's life after diagnosis, we not only prayed ourselves, but there were at least five people (and some churches) praying also. It meant the world to us and I'm convinced that it helped us accept the reality of our situation.


It's ok to ask God why you're in this situation. Many in the Bible did that and survived. God cannot answer your questions if you do not ask them. He can handle your frustrations, you anger, and your confusion. He is God, after all.


Do not give up on God. Finding out that you or a loved-one has cystic fibrosis is devastating, but not something that is past the power of God. He has done miracles for my family, particularly through the health of our daughter. We have been amazed at what God has done for Sam, and for us. Our faith has been strengthened, not damaged, by the occurrence of cystic fibrosis. Lean closer to God despite this disease, and watch him do great things!

Half Marathon Update

First of all, I'm now a CF Strider! The change actually took place a few weeks ago, but I wasn't confident enough in the status to announce it. Turns out that there was a mix-up in the registration and I was registered twice. So the race folks fixed it and I'm good to go! Now I'm raising money for the CF Foundation!

Results for the week:
Miles: 12.3
Weight Lost: 2lbs
Money Raised: 0 (with one commitment)

On Saturday I ran in the Temecula Turkey Trot. I'm picking up a few races here and there to use as training runs. You can read my report of the race HERE.

Gratitude

I'm so grateful that Samantha is doing well and that she's in good health. I'm grateful that I have the best partner in the world (I love you Alicia) to help me and to lead the caregiving for our daughter and son. I'm thankful for a son who loves his sister and his parents. I'm thankful for a group of people on my ship and in our neighborhood who go, literally, the extra mile (or 4!) every year for Great Strides.

Maybe, most of all, I'm grateful that CF doesn't define us. Our relationship with Christ does.

Half-Marathon Update

Injury:
It started on my recent 10 day underway off the coast of San Diego. As with most places as fall settles in, the seas were choppy. Not bad, but choppy. I, in my gung-ho running state, decided to give it a go despite the conditions, so three times I jumped on the treadmill for a 3 mile run, only to be thwarted each time. Running while inside a steel (actually aluminum) superstructure is not a good idea, especially with the swells.


The fourth day I tried, I pushed through the heat inside the skin of the ship and the swells and finally got my 3 miles in. But my ankle started hurting almost immediately after. I did it one more time before pulling back into San Diego. Both times I know that my right ankle suffered under my large frame and the ocean swells.

Long story short: I have my first injury. I think it’s just a stress-type injury to the muscles around my ankle, nothing serious. However, I took it easy today, the first day of my actual 10 week training program.

Test Run:
On Saturday I will run my first moderate distance race (10K-6.2M). My goal is to beat 1 hour. If I get 59:59 I'll be happy. Of course, I'll be happy if I just finish, but I really want to beat the hour mark for this. I will run up in Temecula, California at the Sun Strides Temecula Turkey Trot.

Overall Status:
I ran 14.8 miles last week, my longest run on Sunday covering 4.8 miles according to my car's odometer. I haven't lost any weight, but that's because I can't stop eating. I have started justifying my eating habits because of my running. If I can lick that, I'll start losing weight for sure. I'd like to be 20 pounds lighter by January 24th, the day of the Half Marathon. We'll see how it goes!

A New Acronym: ARDS

I have written fairly extensively about diseases in the Autosomal Recessive Spectrum, of which cystic fibrosis is a member. I plan on continuing to write on occasion about the various problems encountered by those of us affected by the diseases contained in this spectrum because I believe we can learn from each other. Every one of the diseases has a small population base, which gives us yet another thing in common.

But honestly it gets a little odd to type Autosomal Recessive Disease Spectrum five times or so in an article about the spectrum of diseases, so from now on, you will undoubtedly see the acronym ARDS. I have done some searching on the internet and so far I haven’t found anyone who has anything better, or even another acronym at all, so I feel confident in that I can take the liberty to create one.

We all have a stake in our respective diseases. Why not take the stand together?

US Navy Flag Donation

At the Well-Healed Gala this year, a flag was given away at auction and raised several thousand dollars. I was intrigued by that, and since I had a flag from deployment, we donated it to the local Cystic Fibrosis Foundation chapter here in San Diego for use in an upcoming event. Alicia and I purchased a fairly simple, but stylish display case (Pictured above) and delivered the flag and case to the CFF San Diego office.

Here is the caption I wrote for the flag:

A flag can represent a lot of things, good and bad. What it mostly does, however, is identify a cause, unit, or country. The United States flag presented here represents the country, yes, but also a cause. It is the cause that Americans can defeat any foe we face.

The foe, in this case, is cystic fibrosis. Your donation has and will help us fight back against a disease that affects over 30,000 people in the United States and countless others as family members. We will win, and you have helped. Thank you!

I am so grateful that the flag was auctioned off for $2000.00! I can't believe it raised that much money! Want to know something even better than that? The winner of the auction donated the flag back to the CFF San Diego for future use! That will hopefully allow it to continue to raise money year after year! I'm so happy to have been part of the event, even though I was actually underway at the time. I'm grateful that it raised so much money and that it will continue to generate funds at future events for the local chapter of the CFF.

Two Most important parts of the Cystic Fibrosis Foundation Website

The CF Foundation’s website is chuck full of information, news, and assistance. However, for the CF newcomer, it might be just a tad overwhelming. There is a lot of information to get through because CF is a very complicated disease. However, there are two primary areas I would recommend when you’re starting out. The others can wait until your head has stopped spinning.

Most important part 1: About Cystic Fibrosis

Your doctor undoubtedly gave you at least a basic understanding of cystic fibrosis when you first met him or her. Don’t be embarrassed if you forgot most of that information. Who could blame you with all of reality crashing around you? Just know that your first source of information about CF is this website, in particular the About Cystic Fibrosis heading.


Most important part 2: Living with Cystic Fibrosis

A whole new world has opened up to you, and for the first time in your life, you really didn't want to see it. You vaguely remember hearing from the doctor about enzymes, breathing treatments, chest PT, and enzymes...wait, you already thought you heard that, right? Or was that something about clinical visits? Or man it's all running together!

It's ok. There's a lot to learn about living with CF, so click on the tab with that title on the CF Foundation website. Some of the stuff you need to learn ASAP. Some of it will come. Follow the doctor's orders, read the website's information, and move forward. You can do this!


When my wife and I first found out that our brand-new daughter had cystic fibrosis, our heads spun a little. We didn’t know what to do except pray, ask our friends to pray, and research as much as we could. You’ll do yourself a huge favor if you’ll start your research effort at the CF Foundation’s website, particularly with those two headings. The rest will come in time…I promise. Oh, and prayer wouldn't hurt you either.