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Scrapaganza

Novel Patient — Mon, 13 Jun 2011 07:48:34 +0000

When I look back on the most rewarding experiences of my life, they are almost all to do with serving others. Right now I'm working on a community service project called Scrapaganza. Scrapaganza is a scrapbooking event at the Ronald McDonald Share

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Post tags: circumstances, donations, Facebook, family, hospital, inspiration, joy, joyous memories, keynote, Los Angeles, mcdonalds, Organizations, parent, parents, personal story, Philanthropy, rewarding experiences, ronald mcdonald house, Ronald McDonald House Charities, scrapaganza, scrapbook, scrapbookers, scrapbooking event, siblings, story, stressful time, support, Twitter, volunteers

Creatively Courageously Embracing Health

Novel Patient — Mon, 18 Oct 2010 22:59:46 +0000

This is not an easy thing for me to confess, so please be kind. I realized that I am afraid of getting better. Not because I am afraid of being well; I want nothing more than to be well. I am afraid of getting better because I am afraid that I Share

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Myasthenia Gravis: A New Diagnosis Knocks Me From My Path

Novel Patient — Sun, 10 Oct 2010 05:44:20 +0000

When you are living with multiple chronic illnesses things can quickly spiral out of control. Cruising along getting through the day to day and then suddenly you are veering off the road and into the dark unknown. What started as a tiny pimple t Share

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An Update and a Big THANKS!!!

Novel Patient — Mon, 04 Oct 2010 04:49:11 +0000

Even as I listen to the alarms of my own monitors, angry that things still aren't quite as they should be, today I just feel so grateful to be alive. Life is so precious and short and wonderful. I feel so lucky to be breathing on my own again. It Share

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Current Hosptialization Update

Novel Patient — Thu, 23 Sep 2010 18:45:30 +0000

I have multiple autoimmune diseases that have made me really sick over the years. But got a bad skin infection (cellulitis) last week and ended up in the hospital last Friday mostly because I have so many complications including being on a lot o Share

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Too Young: Invisible Illness and Pain

Novel Patient — Mon, 13 Sep 2010 18:47:12 +0000

"Too young." That is a phrase I have heard a lot in different contexts since I've been dealing with chronic illness. I've been told I'm "too young to be this sick", "too young to have to use a wheelchair", and "too young to have to use a walker" Share

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A Place For Him

Novel Patient — Mon, 24 May 2010 05:34:00 +0000

Things have been emotionally rough and raw lately. Lot's of things are in transition. Relationships in flux. And I'm still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count). I'm trying to think of it as Share

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Shattered Trust

Novel Patient — Thu, 20 May 2010 00:15:59 +0000

I'm Daddy's little girl all grown up, but I still need my daddy. I want to bask in his strong embrace. Instead he gives my heart a chase. He pushes me away into the wrong kind of space. My dad and I hold polar opposite believes when it comes Share

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Seeing Double

Novel Patient — Thu, 13 May 2010 01:46:04 +0000

There are two ways to look at everything. Like dark and light. Like black and white. Positive or negative. There are two ways to view every situation life throws your way.

People often ask me how I maintain such a positive attitude despite all I go through. I tell them that first of all life is too short to spend being unhappy. Besides… I have two choices. I can be sick and miserable or I can be sick and happy. The choice is mine. And I chose to be sick and happy!

It’s a sort of double vision as I see it. There are two ways to look at every situation. And right now I literally am experiencing double vision. I am also having extreme difficulty lifting and moving my left leg.

Yesterday I saw a neurologist here in the hospital. (Yes I am STILL in the hospital – 21st consecutive day and 27th total day.) And he thinks that one of two things is going on. Either I have an ongoing chronic probably Autoimmune neurological disease causing this and my other neurological problems. If this is the case it might be something like Multiple Sclerosis or something similar. Otherwise I might have had a one time incident a few years ago when I couldn’t move either of my legs for a month that left me with permanent damage. Either way the infections I’ve been fighting has been exacerbating my symptoms.

While we are trying to figure things out my neurologist gave me an eye patch so that my double vision is reduced by looking out of only one eye. Now I can see more clearly. And what I see is this…

I could curl up into a ball and cry about having another serious health problem – a health problem that is effecting not only my vision but my mobility and my cognitive abilities. Or I can realize that I already have had this problem either way. Now I’ll finally hopefully have a name to put to it and a way to treat it and make it better and easier to live with!

Looking like a pirate with my eye patch (ARRRRRR), I no longer have double vision. My vision is clear (despite the fact that it is still a bit blurry even with my glasses). So I can clearly see that I have a choice in how I view my situation. And I chose to deal with it with strong faith that things with be okay somehow as long as I choose happiness every time!

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Hospital Update

Novel Patient — Thu, 06 May 2010 06:16:31 +0000

I'm scared about tomorrow. Tomorrow I have to get a feeding tube put in. But let me back up. My liver function has been declining. But now my GI doctor thinks that my liver problems might be from the oral antibiotic they had me on for my ki Share

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