Monday, September 15, 2014

New Bed

About a year and a half ago Larry, the man that services my bed and wheelchair, informed my mom and me that the manufacturer of my special air bed was no longer making new replacement parts for the model of air mattress that I use. At that point I knew my bed’s days were numbered, but I had a few spare parts in reserve, so I was able to squeeze an extra year and a half of life out of my bed. I knew that it was truly the end of the road for my bed at the end of July when it was clear that there was another leak in one of the mattress' components. I knew it was time to start looking for a new one.

Unfortunately, what insurances will and won’t cover has really changed for the worse in the past decade since I got my bed after my accident. Long story short, the only mattress my insurance (all three of them) will cover is either a $300 foam mattress or a $300 gel overlay (to go on a regular mattress). Neither option is sufficient for someone who can’t move and can’t shift their weight around. My doctor wrote the mandatory letter of medical necessity explaining why it’s so crucial for someone completely paralyzed to have a special mattress... NOT that it did any good. The insurance company said that I didn’t qualify for anything more than the $300 foam mattress or gel overlay. 

The only way someone qualifies for the kind of mattress like I had previously is if they already have multiple bedsores. Why not try to PREVENT pressure sores in the first place?! It’s healthier for the patient and much more cost-effective for the insurance company in the long run. But that’s unfortunately not the way the health care system works these days. (And just for the record, if you did have bedsores and did qualify for a special air mattress, the insurance company will only pay for it while you have bedsores. Once they have healed up they will come take the air mattress away and you’ll be stuck with the $300 foam mattress. Don’t worry… chances are your bedsores will be back in no time. :/ It's really ludicrous, but that's sadly the way things are.)

So, since the insurance was really no help, we decided to find an air mattress and pay out of pocket. My mom started researching air mattresses on the Internet. It’s really hard to know exactly what different mattresses are actually going to feel like, since it’s not like I can go to a furniture store and test them out. Buying blindly just based off of a short description and small picture really doesn't set your mind at ease! However, my mom found a local vendor here in the St. Louis area that sold the mattress we found online that we thought would work well for my situation. My mom talked to them on the phone and she found out that this company would also deliver the mattress, set it up and service it in the future if/when we should have any problems with it. This company also sold the mattress we liked for almost a third of the price that another local vendor quoted us, which was great. AND it’s also under warranty for five years. My mom and I both felt good about all of this so we decided to order it.

Thankfully my old mattress hung in there until my new one arrived. I couldn't utilize all the bells and whistles that I once could, but it still inflated enough to keep me comfortable. A nice man came and set up my new mattress last Thursday and explained some of the features to my mom and me. The new mattress definitely feels different than the previous one, so it’s taken some getting used to. There are some things I like better about this new mattress and some things I like better about the old one, but I think it will suit my needs just fine. I'd feared that I would be stuck with a mattress I hated, so I'm relieved that that's not the case.

Here's a picture of what the new air mattress (SelectAir Max made by MOXI) looks like. It fit perfectly on the bed frame that I used with my other air mattress.

Saturday, September 6, 2014

People Helping People

Arnold Harvey has been working for Waste Management as a waste collection driver for the past 25 years. He drives a night route and services different areas of Washington, D.C. In 2007, Arnold started noticing a growing number of people––particularly families––sleeping on the streets. Arnold organized a collection among his waste management coworkers to gather food and clothing for the homeless. As customers on his route began to hear about his efforts, they began donating items to the cause, too. Arnold began arming himself with "love bags" filled with homemade sandwiches, food, toiletries and blankets to give to the homeless. 
Arnold, along with his wife Theresa, decided to start a small, nonprofit organization called God's Connection Transition (GCT). The Harveys partner with several grocery stores and local shops and they've convinced them to donate their surplus supplies to their organization. During the week Arnold and his wife distribute items to local churches, homeless shelters and community centers. They also rent a warehouse that they've turned into a small grocery store where people who need assistance can come and "shop" and get groceries free of charge. Through these efforts, the Harveys provide donated food and supplies to roughly 5000 families each month. 
Imagine what the world would be like if people acted a little more like Arnold Harvey! If we all do a little, we accomplish A LOT!

Thursday, August 28, 2014

Thanks for the Laughs

I know this isn't breaking news, but I still wanted to make a post about it.
Death is obviously a natural part of life, but it's always shocking when someone well-known or someone you personally know dies. That's how I felt on August 11 when news of Robin Williams' death broke. He was only 63, which really isn't that old for someone in seemingly good health. After Robin's death his wife revealed that he had recently been diagnosed with Parkinson's disease. Finding out that you have an incurable disease would  be a major blow.

Robin was an incredible actor and extremely talented at doing voices and impressions. His hilarious antics on-screen could make anyone laugh. Off screen he struggled with depression, which is ultimately what led to his death since he ended his life by hanging himself. I don't know what it's like to suffer with depression on an ongoing basis, but I've heard it's terrible. I know what it's like to feel sad, though, and the thought of waking up every morning knowing that you're going to be plagued with bleak, hopeless feelings would make for a miserable existence.
Robin was quite the philanthropist. He used his time, money and celebrity status to help others and was involved with more than 50 charitable organizations and causes. Robin worked with Comic Relief to raise money for the homeless. He also worked with the USO and toured the Middle East five times to help raise morale among our troops.
He worked with the Livestrong Foundation and Child Athlete Foundation. In 2010, he donated 100% of the proceeds of his shows following the devastating earthquake in Christchurch, New Zealand to all the people affected by the earthquake.
Robin supported St. Jude's Children's Hospital and never charged a fee for his participation in any events or activities for them. Whenever he had an opportunity to meet patients and their families he would do it just to cheer them and help them forget about their diseases for a while.
When Robin studied acting at Juilliard performing arts school, his roommate was Christopher Reeve and they developed a deep friendship. After Christopher Reeve broke his neck in a riding accident and became a quadriplegic, Robin went to visit Christopher in the hospital. He walked into the room dressed as a doctor, claiming to be a proctologist. Christopher said (of seeing Robin) that that was the first time he'd laughed since becoming paralyzed.

Robin served on the board for the Christopher and Dana Reeve Foundation for several years, and would do several fundraising events each year to raise money for spinal cord injury research. The CEO of the foundation said that many celebrities he'd worked with had requirements for cars and who they would talk to, but Robin would show up on his own and talked to everybody. He was also very generous and quietly donated a lot of his own money to the foundation.
Robin Williams had such a wide range in his acting abilities, from serious to laugh till you cry funny. Dead Poets Society was my favorite Robin Williams movie. I was also a big fan of Hook, Aladdin, Mrs. Doubtfire and Jumanji. I also really liked Robin's portrayal of Teddy Roosevelt in the Night at the Museum movies. Jack, Awakenings and Patch Adams were all really good, too.
Robin overcame addictions to drugs and alcohol. He was the father of three and an athlete. He won an Oscar (best supporting actor for Good Will Hunting) and was nominated for three others. He was extremely talented and loved by so many. Even though he was a celebrity, he used his wealth for good and was generous, thoughtful and seemed to get a lot of satisfaction out of helping others who were less fortunate. He's gone too soon and could've gone on making great films for another 20+ more years. Robin Williams  made the world a happier place and will definitely be missed!

Monday, August 25, 2014

Social Media and Crowdfunding

When I had my accident in 2003 Facebook had yet to be invented, and while blogs existed, it wasn't until after my accident that I actually heard the term "blog" and learned what they were. (I distinctly remember asking, "What's a blog" once, which now seems ironic.)

Sometimes I wonder what it would've been like if sites like these had been around when I had my accident. My mom sent mass emails to my family members to keep them updated on my progress, but a blog (or Facebook posts) would've been an even more convenient way to spread the word about what had happened and how I was doing each day. I would've enjoyed going back through those posts to read what happened on a daily basis. Sure I have my own recollections, but time has a way of dulling even the most vivid memories. And if iPads had existed at that time my mom could've given an up to the minute play-by-play of things as they were happening!

In 2003 there were also no online crowdfunding websites (like gofundme) where people can donate to a special cause or person. I imagine someone would've set up one of those accounts in my name to help raise money for my expenses. Those sites are so nice since you can quickly and conveniently donate to a good cause in just a few minutes. Than you can post and/or tweet about it on various websites to help spread the word about who you are raising money for and why.

The Internet is truly a marvel. It's amazing how you can spread information so quickly. But you better be careful, because once it's out there, it's out for everyone to see! There are definitely some sites and scams that will get you into trouble, but overall the Internet is truly a remarkable invention. Think about all the places you can go and things you can do all from the comfort of your own home. It's amazing and offers a lot of possibilities to someone like me who can't get up and go as easily as an able-bodied person.

Monday, August 18, 2014

ALS Ice Bucket Challenge

In the last week I've seen tons of videos on Facebook of people pouring buckets of ice water over their heads (or other people's heads). I've even seen celebs and other well-known people participating in this frigid challenge on TV. I quickly caught on to the fact that it's to raise awareness for ALS. It's interesting how fast fads and other challenges like this spread. I've probably seen 15 videos just on Facebook today.

Initially, I wasn't quite sure what the point of dousing yourself in a bucket of ice water was, and how that raises money for charity, so I did what I always do when I'm curious about something. I consulted Google, of course! Here's what I learned: People make a video of themselves dumping a bucket of ice water over their head, then they upload it to a social media website and challenge their friends to do the same within 24 hours OR donate $100 for ALS research.

You might be thinking exactly what I was at first, "How is that going to raise money for ALS?" since it's clear from the number of videos going around that lots of people are opting to go the ice bucket route. As with any trend, many people are fans and others have pooh-poohed the idea. I saw this meme on Facebook earlier today:
Okay, that's a valid point. It's sad to think about how we really take clean water for granted here in America and to think about all of the waste there is when it comes this the resource. I guess people could do far worse. The ice bucket challenge has been fairly successful, though, since it has raised over $20 million this summer, not to mention tons of awareness. I guess this challenge is pretty clever after all. ;)

Amyotrophic Lateral Sclerosis is one of the cruelest diseases. Imagine one day experiencing weakening in your muscles and you slowly become paralyzed. Not only do you lose the use of your limbs, but you also lose the ability to breathe, swallow and even speak, all while your mind stays sharp and intact. It's truly like being trapped. I much rather become paralyzed in an accident since you can still live a relatively long and healthy life than to develop ALS which progresses relatively quickly (average life expectancy after diagnosis is roughly two to five years).

One final meme to end this post because it made me laugh:
Still shot from the Captain America movie
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