The night is my time to come alive. My family is home, safe, and asleep in their beds. The sound of Rogers snoring brings a peaceful feeling knowing he is here with me. In a way it makes me feel ‘normal’. [whatever normal is] I do not feel useless in the night. There is no reason to get up and go. Being in my bed, blogging, playing games, requires no walking.
The daytime brings feelings of emptiness. There are so many things I want to be doing, so many things I want to accomplish. Those things must be forgotten now and a new story has to be written. I miss being able to work outside of the home. I loved working, being around people, the excitement of it all. But again, a new story must be written. How do we write that story?
I once had a chair, a chair that brought me back to life. It empowered me. I went through all the training for the chair. My insurance paid for the months of training, but then denied me the chair. So my father made it possible for me to purchase the chair. I cannot tell you how full of joy I was when he told me we would get the chair. My insurance company [Pacificare] called it a luxury item and therefore they would not pay. The chair is/was called the iBot. It could go into a 4 wheel drive mode so I could get up curbs and thresholds. It could rise to 6′ on two wheels using a gyro system. I was able to reach things again, go to peoples home and actually get in the door. But, it was a luxury.
Then after everything, within one week we got a notice saying they would no longer be offering the iBot. The cost was too high [26,000] and insurance companies would not pay so it was not cost effective for them. They would offer 3 years warranty but after that you are on your own. We chose to return the chair as if something went wrong the cost to fix it would not be worth it for us. A certain part costs 5000.00 and that is not covered after 18 months.
I remember going to Sam’s club and feeling so empowered. I went up in the two wheel function and was tall again. Instead being looked at and asked what happened, people stopped to ask about the chair. Not to pity me. The chair gave me my independence, my life back.
I remember the day the rep came to take the chair back and return the money. It felt like I was being told I had MS all over again. My independence was leaving through the front door. I tried to smile and make it ok, but the tears slowly fell from my eyes. This chair, considered a luxury by the insurance company, gave me back hope. I could reach things in my house again, I could get a glass on my own, cook on the stove w/o burning my arm. Now it was gone. As he drove away with my chair, a part of me went as well.
In Walmart yesterday an item I needed was on the top shelf. My first thought was the iBot. I was so embarrassed that I could not reach it. Luckily an adorable associate came back to the aisle for me and got it down. I thanked her and rolled away with tears welling up in my eyes. Independence lost!
We ended up using the money to purchase a handicapped accessible van. We did need one, so there is the positive. But, I miss that tiny bit of freedom I got back. Even if it was only for a short time. I miss my iBot!
I still get angry at their comment that it is a luxury chair. Is it a luxury to go up a curb? Is it a luxury to be able to reach things? Is it a luxury to have a chair that can get you on grass so you are able to see your child play soccer? Is it a luxury to have a true quality of life? I truly wonder how these people would feel about it if someone they loved needed one. Bet they would get it paid for.
The iBot would have been my new story of independence. But now that story must be re-written as well. So, tell me, how do we write that story. I truly need to know.
On a lighter note… if you know any millionaires that have money to spare and are looking for a cause, look no further! Here I am!! 😛
Blessings and Peace!
UPDATE! OK, so my hubbies snoring is now like razor blades going through my brain!! Where is an iron skillet!! If I have to roll him over one more time it will off the bed!! rofl
Making it Through the Rain 
Insurance companies can be so frustrating, I am appalled but not surprised by their decisions and their insensitivity…fu*$t@ard$….
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It is absolutely appalling they won’t pay for one for you!!!!
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Well eventually [after 8 months] they got me a basic chair. ooooooo ahhh lol the fecktards!
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You know Tracy, wouldn’t it be nice to know who exactly the person is, that’s in charge of creating the list of items considered to be “luxury” and not covered by insurance?? And their reasoning behind it?? As you stated, I’m sure they get around that clause when it comes to one of their own! This could be a great issue for you to re-write about!
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I told the reps [many] that I spoke with that the next time they step up a curb, reach for something high, or can get on the grass to be with their kids, to remember it is a luxury. Talk about silence on the other end!
Blessings..
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Tracy,
Insurance companies are often impossible.
I thoroughly enjoyed this post!So many thoughts I can relate to! No, not MS, Post-Polio. And not chair bound, yet. Just ridiculously fatigued.
Blessed Be.
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So far, they have been nothing but impossible for me. Denied for meds, treatments the first time. Guess they figure people will give up. They have no idea who they mess with when they deny me. lol
I hope you never become chair-bound. Blessings to you!
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Oh Tracy…
We are so in sync right now. I cried, when I read this.
Once again, I’m struggling with the ongoing insanity of Medicare and my power chair. I’ve spent the last two days contemplating being without it again (as I was from Dec. 08 until Mar. 09) and how horrible it was to not be able to go out and walk with Kodi, to not be able to visit with my neighbors, make a quick trip to the little store a couple of blocks away.
Medicare won’t purchase a chair for the sole purpose of using it outside, it must be necessary for indoors, to improve ‘quality of life’. They will not pay for threshold ramps, because they say it is a luxury to leave the house, go for groceries, see your doctor, etc.
When my first chair broke down and a 16 hour charge gave me only 30 min. of ride time in the house, they told me they wouldn’t replace it until it was 5 years old. It was only 2 years old when it stopped working properly. I asked them what I was to do in the meantime and they had no answer for me.
I, too, have reminded ‘able-bodied’ people to give thanks every day, every time you reach a coffee cup from the top shelf of your cupboard, every time you step up on a curb, every time you are able to enter a store to shop and can do so without assistance, because one day, God forbid, they could find themselves, as I did, no longer able to do such things without the help of others.
I fail to see how being a shut in, confined to one’s house because it is a luxury to leave it, is defined as quality of life.
Much Love & Hugs
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Kind of scary how our lives parallel. Wow, to have the luxury of exiting one homes. To have the luxury of not being trapped on a street with no access to get on the curb. To reach for a glass on a shelf, or to be able to cook without burning ones arm.
I guess we are selfish wanting such luxuries Robin! How do they sleep at night??
xoxo
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