Musings of a Medical Zebra

A Zebra Speaks

Tired

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February 1st, 2011 Posted 11:23 am

Tired — that word sums up the last several months. Fortunately, I have a new sleep specialist. Not only is he a great doctor and a nice guy, but he also has an interest in EDS. At my first appointment, we spent 20-30 minutes just talking about EDS — the types and their manifestations.

When he was in medical school, EDS was still classified using Roman Numerals. For him, Classical EDS was split into two types — EDS Type I and EDS Type II. Now it’s one type and called Classical EDS or cEDS. Similarly, Hypermobility EDS was EDS Type III and Vascular EDS was EDS Type IV. They are now hEDS and vEDS, respectively.

Of course we didn’t just talk about EDS. The bulk of my time with him was spent learning about the various drugs that can be used to help me sleep, and those that can be used to keep me awake. Unlike my previous sleep specialist, my current doctor understands the most important reason for me to remain alert during the dayย  — so that I can drive, thus maintaining a certain level independence. ๐Ÿ™‚

Currently, I’m taking a drug to keep me awake during the day and a couple drugs to help me to sleep at night. Though I still have a few nights a month where I am only able to sleep for a couple hours in a row, I would say that my ability to stay asleep has drastically improved. My level of alertness during the day has made some improvements as well, but not in proportion to my sleep. I still spend about half the week too tired to make it through the entire day without a 2-3 hour nap.

I meet with my sleep specialist again in February.ย  Perhaps he will have more suggestions, which will lead to further improvements. I will keep you posted. ๐Ÿ™‚

Howe and Howe Tech — Ripchair

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January 5th, 2011 Posted 11:01 pm

Wouldn’t it be awesome if everyone who could benefit from the wheelchair — a.k.a. the Ripchair — that Howe and Howe Tech built for Rocky could afford one? As it stands, according to Howe and Howe Tech, the Ripchairs cost $40,000 a pop. That’s just the cost to build one; that figure does not include profit.

It would be a dream for the company to see the chairs get to each person who needs one. Though they are pursuing ways to make the chairs less expensive, it will likely be extremely difficult, if not impossible, to make the Ripchairs affordable. What the company needs is a financial backer(s)ย  — we’re talking very generous people, like Oprah — to make this dream a reality.

If you are reading this, and you know of such a person/people, please contact Howe and Howe Tech to let them know. They can tell you how to proceed from there. Their contact info is below:

info@howeandhowe.com

Also, I’d like to thank Howe and Howe Tech for taking the time to respond to my e-mail. You guys are amazing and the work you do is awesome. ๐Ÿ™‚


Posted in Misc. Stuff

Hola

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August 16th, 2010 Posted 11:37 pm

I realize it has been a very long time since I posted last. I need to get better about updating this. I promise to do that very soon.ย  ๐Ÿ™‚

Posted in EDS Stuff

May is Ehlers-Danlos syndrome Awareness Month

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May 2nd, 2010 Posted 5:07 pm

Check out the following links for more information:

Ehlers-Danlos National Foundation
Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc.

Posted in EDS Stuff

Farewell to the Sleep Specialist

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April 21st, 2010 Posted 12:06 pm

After a bit of a discussion, my sleep specialist prescribed Provigil at my last visit. I started with a 100mg dose. It helps for a few hours and then stops working. He bumped me up to 200mg and it doesn’t do much more — just makes me jittery. I called him to mention the jittery feeling from the 200mg dose and to let him know that it doesn’t do much more than the 100mg dose. His nurse returned my phone call this morning.

My sleep specialist says that his hands are tied until my pain and stomach problems are under control.ย  He said when I can sleep through the night, he can help me. Until then, there isn’t anything he can do. *sigh*

I explained to him at my last visit that I have a gastroenterologist and a pain specialist. The gastroenterologist has not been able to fix my stomach problems and my pain specialist will not be able to make my pain go away entirely. I thought the sleep specialist understood that, but apparently not.

I have a follow-up with my internist in a few weeks. I will talk to him about this and see what he can do. I see no reason to meet with the sleep specialist again.

Happy St. Patrick’s Day!

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March 22nd, 2010 Posted 11:07 pm

I wrote the following post on the 17th, but am only now getting around to posting it. ๐Ÿ™‚

I was diagnosed with Ehlers-Danlos syndrome on this day in 2005. Rather than dwell on the things that EDS has taken away, I am instead reminded of what EDS has given to me.ย  So today, I celebrate.

Hello Again

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February 22nd, 2010 Posted 5:17 pm

It has been a long time since I have posted. Right now, among other things, I have a bad sinus infection. I’m fairly ill at the moment. I hope to be feeling better by next week. Until then…

Posted in EDS Stuff

Sleep Study Results

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January 9th, 2010 Posted 1:42 am

It took us close to 30 minutes just to get out of our driveway Thursday afternoon. Over five inches of snow fell the previous night. The snow plow didn’t exactly do a stellar job with the streets, so we managed to get stuck in the road adjacent to our house.ย  When we arrived home, we were both pleased to find that our neighbor — who drives a snow plow for the county highway department — had plowed my parking spot. Living in a small town has its perks. Anyway, back to the reason for this post — my sleep study results.

My pulmonologist — the doctor that ordered the test — said that I have Periodic Limb Movement Disorder (PLMD). He prescribed Requip. Since he is stepping me up on the drug over a three week period, I won’t know how well the drugs works for a little while.ย  The hope is that it will eliminate orย  significantly decrease my daytime sleepiness. Some of my medications interfered with the sleep study, making it impossible to determine if I have narcolepsy. If the Requip doesn’t work, my doctor is going to treat me for narcolepsy.

In the mean time, I’m supposed to limit my naps to 20 minutes and I’m supposed to go to bed and get up at the same time each day — no matter how much sleep I get. Needless to say, the next three weeks will be interesting. I am crossing my fingers that the Requip does the trick. Wish me luck, pray for me, or whatever it is that you do.ย  ๐Ÿ™‚

Posted in EDS Stuff

Sleepy…

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December 31st, 2009 Posted 7:28 pm

I have been so tired these past few days that I have barely been able to stay awake. This weekend we will be traveling a couple hours from here to see my husband’s family. I am hoping I will be able to stay awake long enough to visit. We’ll see.

Next week I meet with my pulmonologist to talk about the results of my sleep study. I cannot wait.

Dizziness

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December 20th, 2009 Posted 8:21 pm

I’ve been having dizziness episodes lately. At the same time the dizziness kicks in, my feet and/or arms briefly go numb. It’s a strange feeling — quite disturbing. I hope it goes away soon.