• The boys and I

  • A Little ‘Bout Me

    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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Calling All Prayer Warriors

Two posts in one day. Someone check the weather forecast for the nether world please.

This weekend the boys and I traveled to the greater Los Angeles area for our family Christmas party at my Grammy’s house. I haven’t been since D was 8 months old due to first his, then my health issues. It was particularly nice to see everyone because it’s been so long.

We are not the only ones in the family that have had health issues. I have 3 cousins (not my blood relations), 2 siblings and their first cousin, who have been diagnosed with Multiple Sclerosis (MS) over the last 9 years. Interesting that the medical profession doesn’t consider MS to be a hereditary disease.

The last of these cousins diagnosed is CS. She was only diagnosed 2 years ago or so. At the time she was a teacher. Among other things, she taught PE and was a coach. Last year her legs began failing her and she went into a wheelchair. For some reason that is unclear to me, those of us in the extended family didn’t really know this until about 5 weeks ago. At that point my grandparents went to visit her. She looked good, had a great attitude but did not have the use of her legs. Very sad for a young woman who had always been so physically active. Also, very difficult for her to care for her 3 year old daughter.

I was a bit nervous to see CS at the Christmas party, I must admit. After her brother, MM was diagnosed he was not the most pleasant of people to be around – quite petulant, actually. Not that I could possibly get an accurate picture of someones life in a 3-4 hour, once a year party. At any rate, I was hoping I wouldn’t embarrass myself. I have a habit of inserting my foot firmly in my mouth quick as a flash.

Seeing CS was a pure joy, as, I am pleasantly surprised to report, was visiting with her brother. The real shock came at seeing her in her wheelchair. In the last 5 weeks not only has she lost the use of her legs, but also her arms and has limited breathing issues and slurred speech. She can no longer feed herself and has had to hire a live-in care giver. In 5 weeks time.

You’re probably not shocked to hear that they no longer think it’s MS. In fact, the 3 spinal taps they’ve done to test for MS have all come back negative. They thought it was a tumor on her brain stem. Yes. That is as bad as it sounds. But just today we’ve found out that the CT scan showed no tumor on her brain stem. That’s a real mixed blessing. Thank God it’s not an inoperable brain stem glioma. But what is it?

What the CT Scan did show is that her brain stem is atrophied. The doctors are completely stumped. The couldn’t even give her a guess at what it might be. They just don’t know. So she’ll be seeing a world renowned neurological diagnostician at UC Davis. I think she’s seeing the House of UC Davis. That would be cool if it wasn’t so scary.

Wow. That was a really long story just to ask that y’all add my cousin to your prayers. But if anyone needs them right now, she does. Oh, and lets add a PS that the diagnostician isn’t on as many pain killers as Hugh Laurie’s character.


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