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I was so tired. I’d been at the Mayo Clinic four days, being subjected to constant medical tests and physician scrutiny. They ordered another MRI. The machine was down a long hospital hallway. The nurse guiding me got frustrated that I was walking slowly, turning and huffing at me as I got further and further behind her. I wanted to scream, “Do you not see the cane? Is this not the Mayo Clinic? Are you not here to help?” Instead I just started to cry. I wept as I walked, as I waited, and as I was prepared for the test. I cried enough to soak the cloths holding my head still inside the MRI machine. Not one of the dozen medical personnel present offered any comfort or even asked what might be bothering me.
Maybe they thought a friend or family member would show up to take care of me eventually. But I was there alone, and it remains one of the most lonely memories of my life.

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At the Mayo Clinic, I had every test the doctors thought might cause the problems I was experiencing. Many of these were repeats of previous testing, but there were some new ones.

One test placed a small conductive element on the back of my hand and I told them what temperature I felt and to what degree. Of course I didn’t know what I was supposed to be feeling, and that was the point. That test showed significant deficits in my ability to sense temperature.

The neurologist exam was fascinating. For part of it, the neurologist used a piece of cotton to touch different areas of my limbs, while asking me to describe where it was. If he touched my toes I could sort of feel it, but kept feeling it after he lifted the cotton. With my eyes closed I had no idea where the cotton was touching or when it was lifted – at least not on my lower limbs.  About knee/elbow height I could predict sensation normally.

After briefly going over the negative results of all the other tests, the neurologist said, “I know exactly what you have, and it does not surprise me that you have not been diagnosed until now. Most doctors don’t know how to test for it. It’s called ‘small fiber neuropathy.’”

FINALLY A DIAGNOSIS!

I guess I really want to know if you anyone really wants to know the rest of the story? It’s been a whole year so… anyone still interested?

This is why it has been a year…

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After multiple tests and every doctor in the state my family physician thought might be helpful, I went to the Mayo Clinic in Scottsdale, AZ.

I took a plane. Asking for a wheelchair when you look relatively young, (I’m 40) causes a lot of doubtful scowls. Anyway, half way through the flight I realized my foot was resting ON the foot of the man next to me. I quickly pulled it back and blurted, “I’m sorry, I can’t really feel my feet, I didn’t know…” He just huffed a quiet, “It’s OK,” but his body language told me he thought I was completely nuts.

I still laugh!

I just love this catalog – such variety in durable textiles. Not cheap in either sense of the word, but I hope you find some good gifts to share.

Keep the kids warm!

Women’s sizes!

… because when I started this site I promised myself I would never write an “I am sorry I haven’t kept up” kind of thing.

Some circumstances in my life have changed dramatically in the last three months. They are good changes! I promise to write about it soon – but here is a hint: my wheelchair is gathering dust in the garage.

I am making adjustments and re-balancing, hoping to continue writing very soon. Let me know if you are still out there, and any requests are welcome!!

cyaround,

My wheelchair batteries have been pushing their limits for a few months, not taking a charge very well. I knew I would need to replace them soon. However, they are very expensive and our insurance considers them “non-essential.” I was traveling in Egypt until today, when the chair just wouldn’t move at all.

Mobility is not a small thing. The chair is a great blessing to me, and without it life got a whole lot more difficult.

Anyway, I called the medical supply place and was told they would send an e-mail to the guy who would call me soon and maybe get the batteries in a week and a half. For 700 dollars. My friend with experience tells me it will probably be longer, and we worry if I am going to have power in time for Fall classes.

My husband comes home, checks the specifics on the batteries, I do a little online searching, he goes to a specialty battery store and purchases them for 300 dollars  – and installs them in 20 minutes.

He is SO my hero!

It’s always fun to ask a little kid what they want to be when they grow up. My little brother wanted to be a “worker man” which meant someone with a hard hat. My sister was going to be “a star.” That fit her well! My husband wanted to be a truck driver, and he is.

What did I wish for? To be a boy. And it was more than a wish, I honestly thought the change was inevitable. Part of the confusion was I had all brothers and no boy cousins until I was eight, so I figured becoming a boy was just a matter of time. With this in mind, I practiced the one thing I knew boys did differently. My mom wasn’t keen on the bathroom messes.

Eventually I realized I wouldn’t become a boy, and started dreaming of being a mom. Bathroom messes and all.

Once upon a time I learned an 80/20 rule of management: If you put 80% of your effort into 20% of the goals, then the other 80% will fall into place. I am not an MBA, so don’t quote me when creating a business model.

However, it works pretty well raising kids. One of my carefully chosen goals is growing a garden. You will note from the picture below that ours is neither large or worthy of a magazine spread. We have struggled and had many failures. But the 80/20 rule works just the same. We get fresh air, physical exercise, and various science lessons; learn cooperative skills, patience, and problem solving; increase our stamina and accountability – even faith is strengthened by tending a garden. Eventually we save money on food, eat better, and share the bounty with others.

Tell me what you learned from your garden!

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As cool as MRI’s are, it was not cool to see something like this: (Again, not my brain.) The radiologist wrote: “cavernous angioma” and set me on a long, pointless track. My symtoms were getting steadily worse, and this anomaly on my brain made sense – especially since it was located near the part of the brain that controlls balance and sensation. At least it made sense to me.

Turns out these things are common and cause no symptoms in many people. (In others it is very serious.) I would have happily accepted this if the doctors explained it to me accurately from the beginning, instead of saying, “Oh, don’t worry.” Excuse me?! I am using a walker and can’t tie my shoes and have this thing in my brain – and that’s your answer?!  I really wish physicians looking at my brain would treat me like I have brain.

Finally, a University Professor kindly explained details to me, from blood flow in the brain to finer points of MRI imaging. Finally I knew my brain was all right.