November 22, 2007
November 17, 2007
It's wonderful to be home again. After 12 days away from home, I found that all I wanted to do is get back to my daily life. Amazing how a little time away can make me appreciate what I have!
I had really hoped to write updates while I was there in Tennessee, but that turned out to just be too much for me. I have so much to share about my trip. I'll be writing several posts in the next couple days so, if you want to hear all about the whole trip, be sure to check back or subscribe so my blog is sent to your email address.
Tomorrow, I will begin posting some detailed descriptions of my days at Vanderbilt - for those who are interested in what it was like and what they did.
But for now, let me just tell you some of the things I feel I have come away with.
~Sleep Study: I really needed to have a sleep study done. Having had it at Vanderbilt gives me two great advantages (besides it being free). First, my results will advance the understanding of sleep disturbances in dysautonomia patients. Second, my personal results will be seen and evaluated by the Autonomic specialists. I will probably still need to see a Sleep Specialist here at home, but I feel good about having the issues evaluated by those who understand the Autonomic issues.
~Medications: There are no miracle pills, but they did do an extensive evaluation of my current medications. And they have suggested a few adjustments that may help in the management of my symptoms.
~Full cardio evaluation: Doctors who specialize in POTS seem to fall into one of two specialties: cardiology or neurology. The specialists at Vanderbilt are cardiologists. I had intensive evaluation of my cardio health - including a 24 hour heart rate and blood pressure monitor, and an exercise test. During the exercise test, I laid down on a recumbent bicycle. I had an EKG monitor as well as monitors evaluating my oxygen use and the health of my heart. I petaled the bicycle as long as I could (while they increased the resistance). When I was exhausted, I then sprinted as hard as I could. (I imagined I was racing my Dad home during those teenage years when we took long bike rides together. BTW - I won!) After this test, they gave me a full evaluation of my cardio health and advice on how to continue to keep in shape while handling my excessively high heart rate. This has given me greater confidence in how to exercise and guidelines to keep myself safe.
~Helping advance the understanding of this illness: This may not sound that important, unless you have this illness. There is just such limited understanding of it, and very few doctors working with it. It's not that common so it doesn't have a high profile and is not highly funded. So to be a part of the research that Vanderbilt is doing is very important to me.
A great big THANK YOU to all of you that prayed for me and to all of you that sent me mail. I really enjoyed mail call each day. One day, the Doctor brought my mail by and joked about the patients getting more mail than he does!
Goodnight for now. I'm going to sleep well in my own bed tonight!
November 5, 2007
My Sweetie prayed with me and a dear friend was led to pray for me even before she knew how badly I was feeling.
All has calmed down now. As I write, it is late afternoon. I was able to get a badly needed shower, and am almost completely packed.
However, I would greatly appreciate your prayers. My stomach has not allowed me to eat much today, though I am fully hydrated. I really need some good sleep tonight and I sure hope that I don't expereince another episode like that - at least until I'm settled in at Vanderbilt.
Please pray for our travel (Bill and I) and for our health. Pray for my endurance.
And as a final wave goodbye... let me give you a view of my newest felted ACEO. It is titled Leaves and is up for auction on eBay. There is a bid on it so it will be selling in a couple days!
November 2, 2007
I've been weaning off all my meds in preparation for my trip to Vanderbilt. Well... actually - not ALL my meds... I get to keep taking the ones that help my stomach!
But everything else is now weaned. which means I can't stand up without immediately feeling like I just ran a 100 meter dash... my heart races, my chest hurts and my neck throbs. And once I sit down, then I get a headache that lasts for several minutes. Doesn't sound too fun, does it?
Well, I'm excited about my trip. But it's hard to have these symptoms and pack. I'll be gone two weeks. Not only do I need lounging clothes - I need things to make me feel comfortable and things to do in my down times.
Today, I got my iPod all loaded with my favorite music. I also have several Audioplay books checked out from the library that I'm taking with me. These are great because they are a player all in themselves and very compact for packing. I also started packing my clothing. A little at a time... that's the only way to do it!
I would love to get mail while I'm there. I will have my computer (if the hard drive doesn't crash) and will be able to get online most of the time - but notes and cards are very fun to get through snail mail too!
So if you'd like to write me, here's the address:
c/o Bonnie K. Black, RN, CNP
Autonomic Dysfunction Center
Vanderbilt University Medical Center
AA3228 Medical Center North
1161 21st Avenue South
Nashville TN 37232-2195
I mentioned that I've been able to work on some ACEO's. The "Autumn Romp" horse ACEO sold! The picture at the top is "Falling Leaves" and is the Oil Pastel I wrote about a couple of days ago. The second picture is "Sunset Behind Leaves" and is painted on a brand new surface I am experiementing with called Yupo. Creates quite an unusual look with watercolors doesn't it?
Thanks for checking in on me!
November 1, 2007
Before I was sick, I started the creative dance program at this studio. I taught it several years, but due to my illness had to pass it on to a new teacher - who has done a wonderful job. But I miss those little dancers and my involvement with the studio and the Dance Company.
Yesterday, after my PT appointment, I went to watch the end of the ballet class - the class my daughter is learning to teach.
The Artistic Director and I have been great friends through the years, but rarely see each other now that I'm stuck home ill.She waved me into the studio and I went and sat by the mirror and watched the little dancers.
After class, they always give their teachers a hug. Yesterday, Jan, the artistic director, introduced me when I came in. Afterwards... she sent them all over to me to give me a hug!!!
I really miss little dancer hugs!!! And it was so wonderful to get some yesterday!
Today I am very thankful for Little Dancer Hugs!!!