Martha Stewart meets Ironside

Like many people who have a chronic illness,  I am always cold.  Trying to stay warm in a wheelchair can be challenging.   Coats can be bulky and hard to remove while seated.  Blankets can get tangled in the wheels.  I really envy those babies who are warm and cozy in their little car seat covers.  I have yet to find one that is big enough to go over me and the wheelchair,  but I do have some crafty solutions.

  • Modify your clothes so they are easier to use.

    There are a few companies that make “wheelchair garments” but since they are speciality items, they can get rather pricey.  I cheaped out and just cut my jacket down the back, then I added a couple of buttons at the top.  Now it is much easier for my hubby to slip it off with me having to transfer.

  • Mermaids are warm and gorgeous

    I’m sure you have seen all of the cute little mermaid tails that are so popular right now.  Since they are more like a sack or cocoon, you don’t have to worry about it dragging the ground, falling off or getting tangled up in the wheels.  There are plenty of patterns for making your own, but I just decided to wing it.  I think it turned out well and it is really warm.

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If you can’t crochet or sew, you could also make one using fleece and liquid stitch.

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I also made one that looks like a slice of pizza, because I am completely ridiculous.   I also think it is a good conversation piece particularly around kids who may be frightened by a wheelchair.

  • Always be yourself…unless you can be a Disney princess.

    I came across this pattern on ravelry and I knew I had to have one.

     http://www.ravelry.com/patterns/library/princess-dress-blanket-blue

     

    I modified it so it is the perfect length and added a belt to keep it on my waistline.   I also made a Cinderella wig to completely the look, because there is a fine line between eccentric and crazy which I like to play jump rope with.

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I hope these ideas can help you stay warm and comfortable.   For My able bodied friends — these would make great gifts for a loved one who is ill.

Sometimes it’s hard to let go

I know that my posts are usually about movies or t.v. and how things affect us as a group. However, I have had a rough couple of weeks so this one is straight from the heart.

I used to be a pretty girl. I was not girl next door pretty, but Audrey Hepburn kind of beautiful, the kind of pretty that doesn’t require makeup or the latest fashion. I turned heads wherever I went even as teen. I never really thought about it being a big part of my identity, but I guess it was.

Several of you have asked me about my condition which surprised me. I really thought the idea of being anonymous would make it easier to be more candid. I mean who wants to ask someone why Me Before You is so universally hated once you know their life story? That’s fine with me and my Barbara Walters type tell all is coming, but for now let’s just go with “It’s progressive. I was born with a genetic disorder, but I didn’t show symptoms until my teens and I was diagnosed in my twenties”

When I got married, I looked great and still worked part time. I got pregnant with N and I was on top of the world. I had a lot of health problems, but a lot of pregnant women do and are fine after, right? Not me, I was diagnosed when N was less than a year old and my heart sank. No more working, but I didn’t mind so much because I liked being home with him. It did bother me that I couldn’t be as active with him as I hoped. My beautiful hair started thinning and I gained weight because of the medicine, but it wasn’t the end of the world. I had a husband who loves me and a sweet baby so I was luckier than most.

Fast forward ten years– that extra 10 lbs has turned to thirty and my breast that was flattened by an earlier surgery is much more noticeable now that the other is a flabby d cup. My stomach looks much larger than it should due to a massive surgical hernia and wheelchair users don’t really have abs anyway. But the final nail in the coffin came earlier in the week. I had to have my remaining teeth removed due to my illness. They were literally crumbling in my mouth. I would be eating oatmeal and spill out slivers of them. We did what we could do and spent more than we had, but it was no use. If I was 80 I would not really care too much, but I’m a very old 36. If I was normal…I could get dentures…if I was normal…I would have other options….if I was normal…it wouldn’t have happened…oh, if I was “normal”!

But I’m not normal and it did happen, so here I am. I can’t wear dentures because of my condition. My tissue is so weak that wearing a partial shredded my gums and my upper palate is too deformed for a top denture anyway. If I had enough change in the couch cushions to buy implants then I could get new teeth. My palate wouldn’t matter, my disability wouldn’t matter, and my pain wouldn’t matter right now because it would be over in a couple of months at most. But I don’t have an extra $40,000 lying around. My poverty does matter a Lot. I’m not saying that it isn’t worth the money or that the dentist shouldn’t be paid, but I am saying that I should have the same chance at a normal life as everyone else. It is a lot of money to me, but not for medical care in general. Last year alone my medical care was 100 grand, without major surgery. My stimulator alone is worth $30,000 and last about 2 years. This would last a lifetime, possibly another 30 years. There is a big difference in the health and quality of life proportionate to income. Is it fair that I dream of a fully accessible bathroom instead of family vacations or new cars? No, but that’s another topic for another time.

I have a liquid diet now and I talk with a spitting lisp, but that’s not why I’m crying in the bathtub right now. I quit being a pretty girl a while ago, but I am officially an ugly girl because of this. People see an old woman, a gross woman who didn’t take care of my teeth, a freak with a toothless grin or a drug addict that is scum. Should I become a recluse or start wearing a veil like the mother in Flowers in the Attic? Should I wear a fake beard and a mustache or wear a huge onesie and pretend I don’t have teeth because I’m just a huge 6 month old baby? Maybe I should never smile again and develop a really cool bored face? No, I won’t do any of those things. I will tell myself I’m okay and pretend like it until I am. I will pick myself up, put on a happy face (which is really hard without teeth) and I will figure out how to make peace with my body once again. I will remind myself that $40,000 buys new teeth, but no amount of money could buy my precious family. I will find out how to be okay….tomorrow. Tonight, I am just going to cry in the bathtub until I feel strong enough again.