"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

December 24, 2007

Merry Christmas

"Winter Snowman" (c) M. Pruitt 2007
Click Here

"Glory to God in the highest,
and on earth peace to men on whom his favor rests."

December 22, 2007

Opening Night

Once again, picture (c) 2007 M. Pruitt
Costumes copyrighted to Columbia Dance

Yes, Emily - as you put in your comment below, attending this much Nutcracker IS my "Olympics" - to my body at least.... did I win the gold medal??

Last night was Opening Night and the dancers were ready. It was a full house - a fantastic audience which always brings out the best in the dancers.

The picture above is Ellen and one of her best friends. They've been dancing together since they were about 8 - and this picture is a tradition. They began it the year they were little angels (the youngest - tiniest part in our Nutcracker) and they stood across the stage from each other in the wings. Just before going on... they would do this little signal. And here they are... grown up and Principal Dancers in the show!

I made it to Opening Night. By the end of the show, I was so worn out, all I could do is lay on the floor in the Artistic Directors room. By the time we got home, my body was not happy with me at all. I was awake until 2:00 am - shivers, shakes, heart pounding, muscles tense and twitching... it's a horrible feeling to have these symptoms flares. With the help of some medication, thankfully, I did sleep part if the night.

I have one more medication up my sleeve to try to make to today's Matinee (many of the medications that I can take to help get through an activity are things that I can only take once in a great while). But I told Ellen that was probably going to be the end for me. What a sweetie - she's so understanding and supportive! Disappointed, of course, that I won't see her closing "Spanish", but so sweet about it. (I guess I only won the Silver medal LOL!)

That's something every person with a Chronic Illness needs - an understanding and accepting loved one. I'm thankful to have several!

I'm glad I could share this journey to The Land of Sweets with all of you!

December 20, 2007

Tired vs. Tired

Photo (C) M. Pruitt 2007
Costume copyright belongs to Columbia Dance

Tired... Fatigued...Exhaustion...weariness...

These are words that are grouped together in my thesaurus... but do they really define how we feel?

I know that I am fatigued - more so than at other times... but I hadn't thought a whole lot about how it differed from fatigue I experienced before I was sick.

It struck me this week though - how different it is. Bill and Ellen got home from the first late night of Tech Rehearsals for Nutcracker. Both of them were exhausted - fatigued - very very tired. As we flopped into bed - I suddenly remembered that tired the feeling.

I probably experienced it the most that year that I was Mrs. Walbridge (Clara's mother) and Ellen was Clara. Not only did we stand and work and dance and rehearse for 7-8 hours straight, there was the 1/2 hour drive home and then we had to get Ellen's very straight hair, gelled and rolled for the next day of Clara curls. That week, I would flop into bed exhausted, and I awoke exhausted and did it all over again.

But as Bill and I went to bed this week - I realized my tiredness is different. It's hard to describe - but it feels really different to be fatigued, but not from activity. There's a flu like component. When I awaken, I feel sick - like I've stayed up at an all night party. It's a really different "tired" and I wish I could come up with a different word for it!

Last night, at Ellen's Dress Rehearsal for Spanish, we found out that the Mouse King might not make it to the School shows today (they perform for school children). They needed a stand in and I seriously considered doing it.

I came home and watched the video, tried some of the movements to make sure I wouldn't hurt myself and planned how I could pull it off. It's only a minute and half on stage... a sword fight with the Nutcracker. But dancer call was 7:30AM. I figured I could do it with a huge push and lots of one day meds.

But then, as I went to bed... I began to think about the whole week. Yes, I could probably pull it off... but at what expense? Most likely, at the expense of the rest of the week. Did I want to sacrifice the whole weekend of Nutcracker for one 1.5 min part on stage?

Well, if you've read my last couple of blogs, you know how much joy I'm experiencing, in watching Ellen dance. I decided it wasn't worth it. In the days before illness, I could push and be tired. Now, I can push, but then I've got nothing for days. That's a different kind of tired!!!

On a positive note... I am so glad that I can still push and do special things - even when they do cost me!!! But for this week - my push is a slow and steady one... trying to get myself to the Theater as much as possible to watch my beautiful daughter. I stayed home this morning - but I'm planning on watching Cast B (Ellen is Doll) dress rehearsal tonight!

I hope these blogs have done just a little to bring you all with me to the theater, because I love Nutcracker time. I am so blessed to have such a talented daughter who loves me and includes me in her joy of dance. And I am blessed to be able to get out of bed and watch rehearsals, and give input on the staging, and take pictures to store these memories.

I'll close with a big THANK YOU! Thank you to God, thank you to Ellen, and thank you to Jan!

December 17, 2007

Nutcracker Week

Nutcracker Week is here!

Saturday and Sunday were complete run-through's in costume at the Studio, while, at the same time, a crew of volunteers were loading everything into the theater.

I had hoped to attend rehearsal on Sunday. Bill was scheduled to oversee the load-in crew. I awoke and didn't feel very good at all. But with the help of a few medications, I decided to go. I'm so glad I did.

I have special permission to sit by the mirrors and watch the whole rehearsal. I even gave some opinions on costuming, took a few notes for the Director and chatted with one of the little dancers who sat next to me. I also sketched and hope to do some paintings of the dancers soon.

I was very worn out about an hour before we could leave - but I had a wonderful time! Most of all, I enjoyed being with Ellen!

The pictures I've shared in this blog are Ellen and one of her friends, Leah, in their "Doll" costumes. They love to laugh and this old fashioned hand game is one they do in their "Doll Box" (in the dark) before they are let out to dance! :-)

Tonight is what they call a "Tech rehearsal". They are the longest, most trying rehearsals for everyone involved! I stayed home with Chris tonight. We did a bit of Christmas baking. He made the most delicious Apple Cranberry pie and I made Orange Cranberry Bread. Yum!

Bill and Ellen will be home very late. Tomorrow is another Tech rehearsal - one for each of the two casts. I won't go to that either.

But Wed and Thurs are Dress Rehearsal's and I hope to go to both. They are not open to the public at all, but once again, I have special permission to be there, and even have a special spot sitting next to the Director during these rehearsals too. Jan is a good friend and so sweet to include me as much as she does. I can't wait!

Thanks for letting me share my joy of watching and experiencing Ellen's gift of Dance! Isn't she a cutie?

Costumes are copyrighted to Columbia Dance
No copies of the images or costumes are allowed.
Thank you.

December 13, 2007

The Nutcracker is Coming!

This past weekend I had the great pleasure of attending a few hours of rehearsal for Columbia Dance 's "The Nutcracker"

Jan Hurst, the Artistic Director, and I have been friends for many years. This is the studio that Ellen has danced at since she was in Kindergarten - in fact, Jan was her pre-ballet teacher!

Ellen has dreamed, for several years now, of dancing the part of "Spanish". Jan loves to give her Seniors their dream parts, if she can, and this year, Ellen is dancing Spanish, Doll, Snow and Waltz Core!

Sunday, was a full run through of ACT II - this is the Act with with all the variations including Waltz. Bill is working most of the week as Stage Manager, so we went together. He ran through is light and dancer cues, while I watched, sketched dancers and took lots of reference photos. Below is a picture I took while they were rehearsing the closing.

They aren't in costume, though, the dancers who will be wearing tutu's have rehearsal tutu's on. The funny little colored crowns you see is their way of identifying who is who - though the two Spanish dancers have their fans so Ellen gets away with not wearing a funny crown LOL!

I really miss being in this production. But pray with me that I'll have the strength and stamina to attend some of the rehearsals and performances during the week they are in the Theater! I have several favorite spots to watch from the wings. And I like to see the dress rehearsals from the auditorium. I know I may have my sites set a bit too high... I'm trying not to set myself up for disappointment.

The last two days have been very poor, health wise. I might have a cold... it's often hard to tell if I am really sick or just POTS sick. Being well enough to go to tech week and performances means the world to me!

I can't wait to see Ellen on stage with her bright red Spanish tutu. It's a short dance - but one with LOTS of spunk... just perfect for her - I know she'll be hamming it up!

If you live near us and want to come to The Nutcracker this year - the shows are Friday Dec. 21 - Sun Dec 23. Times are: Friday 7:00pm, Sat 2:00pm and 7:00pm and Sun 1:00pm and 5:00pm.

If you want to see Ellen's parts - she dances Spanish, Snow and Waltz on Friday, Saturday Matinée she dances all her parts!!! Saturday eve is Doll, Snow and Waltz core, Sunday matinées is only Snow and Waltz core and Sunday at 5:00 is Spanish, Snow and Waltz core... Got all that??

Tickets to the Matinées often sell out so you might want to purchase them ahead of time. Tickets are being sold in Camas at "My Nana's Cottage/Francieso" on 4th street, and are also available at Beacock's Music and at the Studio - 3101 Main Street, Vancouver. The phone number is 360-737-1922 if you want to put tickets into Will Call.

Ooooo - I'm so excited... I LOVE Nutcracker time and I LOVE Christmas!!!

December 12, 2007

2008 Wall Calendar!

I just had to let you all know that I've reopened my Cafe Press Store. And I've added a 2008 Wall Calendar with 12 different prints of my original Watercolor paintings!

December 11, 2007

Details from Vanderbilt

Here I am in the Nashville Airport!
It's Gibson country with the factory nearby.
I took this picture for Chris!

So I promised a full rundown of my Vanderbilt trip. But I must admit to you all… I procrastinated, but for a good reason!! I have had a wonderful couple of weeks with a reprieve from nagging, constant tiredness I usually face.

This seems to be a pattern, though I don’t know how much I can really count on it. But in the past two years, I get 4-8 weeks of a reprieve on the fatigue and then 4-6 months of fatigue.

But that’s beside the point. My real point is – I’ve been enjoying doing a few things!! I can’t tell you what ‘cause some things are Christmas surprises for family. But I can tell you I had a wonderful day with my little family when we cut down our Christmas Tree. We even had a few snowflakes! I’ve been to church, and I’ve been to a Nutcracker rehearsal.

I did have one really bad day – but that was kind of my fault. I ate a snowball cookie – a family favorite. It has pecans in it. I ate one and chewed the nut really good… but my stomach didn’t seem to appreciate that effort. I was in horrible pain and nausea for a day and spent another day recovering.

So… after that whole update – if you’re still interested… here’s a run down of my time at Vanderbilt:

7:45 Monday night: A symptom flare up begins. Heart rate, nausea, jitters, tenseness, shivers, sweats. I slept for one hour, then 2 hours then a 20min.

TUES: Finally got up at 3:30 AM

On the way to the airport I was extremely nauseous. I made it onto the plane without throwing up. A good friend from church, who is a Pilot, stopped by our gate to say goodbye and tell us he was praying for us. It really meant a lot to me, and I knew at that point that people were remembering to pray for me and I would make it to Nashville. By the second flight – the flare had calmed down. (These symptom flares hit unexpectedly and last 6-18 hours for me. But I have friends who have them last for days!)

We arrived at Vandy at 3:00PM. We sat a long time waiting for registration. Bill took my luggage over and we finally got checked in. I saw Bonnie, the research Director just before she left for the day. We rested, and had dinner. I slept so-so, but better than the night before.

WED: After looking over my arms and a couple of pokes, they decided I had to have a PICC line placed for all the blood draws and IV meds that would be needed. So Wed was pretty much a rest day, and PICC placement day. I’m allergic to Lidocaine – the normal numbing agent used for many of these procedures. But it all went quickly and smoothly.

THURS: Thursday started with a Posture Study. Before anything (including getting out of bed) I had to lay flat for 30 min. They drew blood and then had me try to stand for 30 min. At the end of the stand they drew blood again. This test is looking at the amount of catecholamines released while standing. Many POTS patients have abnormal catecholamine measurements, myself included.

After this test, they brought me breakfast, but after standing, I was very nauseous so it was hard to eat.

A few hours later I had standard Autonomic Reflex Testing. This included a 24 hour Holter Monitor (EKG and Blood Pressure). During the Reflex Testing, they watched my Heart Rate and Blood Pressure during different stressors. I did Steady Breathing, Fast Paced Breathing, Blowing against pressure, Hard Hand Grip, and Hand in Ice Water.

After these two tests, Bill had to head home. I rested and then in the evening, I had another flare of symptoms including a low grade fever. This, too, is common during these symptom flares.

FRI: I was supposed to have the first of a two day test with an investigational drug in combination with drugs that completely block my Autonomic System.

But with the flare, the fever and how horrible I felt, they were concerned for my comfort. By mid morning, I was feeling better, so they did the second day of the test where they only gave me the investigational drug.

I actually felt really good after this test. Unfortunately, the investigational drug is only useful for them to understand POTS. There is no chance that it will become FDA approved because there just is very little call or financial incentive to develop a drug that increases blood pressure!

I enjoyed my afternoon and evening. I even took a walk over to the main hospital gift shop!

SAT/SUN: Both of these days were calm and quiet. I had medication trials on both days.

A medication trial goes like this-
6:00am awaken to have BP taken and 10 min stand
6:30 Breakfast arrives – try to finish before 7:00
7:00- 9:00 rest and wait
9:00 Med trial starts. I sit in a chair and am not allowed to put my feet up. I arrange my computer, and art supplies so that I have something to do during the 4.5 hours. The first 30 min I just sit there with a Blood Pressure cuff on my arm. It takes my BP every 10 min. At 30 min I stand for 10 min (I can sit if I have to). At the end of the 10 min. they drew blood and gave me the medication. I don’t know what it is. Then, I sit for an hour and stand for 10 min for the next 4 hours! As soon as it’s over, they bring me lunch and I’m free for the rest of the day.

I was able to get a shower on Saturday, and I did my laundry on Sunday.

MON: I had the second day of the two day investigational medication trial. I really did feel weird afterwards. I couldn’t stand up for several hours because I would immediately pass out. But that was OK, because my bladder wasn’t working either – so no need to get up!

TUES: Another Med trial just like the weekend

WED: I had a Bicycle Exercise Test. At Vanderbilt they are concerned with helping their patients exercise in a safe way. Not exercising leads to an unhealthy heart and bones, but exercise exacerbates all the symptoms!

So I was put on a recumbent Bike – completely lying down. I had an EKG and Blood Pressure cuff on and I had to breathe through a tube that measured my oxygen use and Co2 release. I began pedaling and they increased the resistance at regular intervals. I pushed as long as I could and when I couldn’t go any longer I gave them the signal. Then I was to sprint as hard as I could for one min.

I was sooooo worn out from this test, but it was also very valuable. My heart rate, as expected goes way too high, but they gave me great guidelines to continuing my approach to exercise.

THURS: Another Med Trial

And Bill came back! I was so glad to see him, but we only had a little time together because I had a Sleep Study that night. I was taken to another room and hooked up to a huge number of wires with patches all over my face and head (the goop in my hair was really disgusting)

FRI: I had my last med trial – IV Saline. We already know that this helps me feel so much better – that’s why it’s the last thing they do. But it also helps record the difference it makes.

After the IV Saline test, we met with the doctor, got all our release instructions and headed out to a hotel for the night. Our flight left very early Saturday morning and we arrived home by 11:30 am.

Whew…. Well… there it is! A full run down of my time at Vanderbilt!

I had a great time making friends with nurses, laughing with the doctors during testing and I even had a nurse bake me my own fudge pie! They don’t react strongly to symptoms that scare me (I think because they see them all the time), but at the same time, they are very sensitive to how I am feeling and how they can help me be more comfortable.

The other really special thing is that they have a patient who lives in Nashville and likes to come and visit all the patients, when she is able. She was able to make it while I was there and we had a great talk.

If you read this whole thing – thank you! If you skimmed – thank you! If you just checked in – thank you!

And thank you for all your prayers and support for this trip. They would like to see me again in a year or two. I don’t know about that – but I sure am glad someone is studying this illness!

This the view from my bed. It's about all I saw of Nashville!

Here's my bed. We put a cot next to my bed for Bill.
He said it felt like he was sleeping on Walnuts!
When I had my sleep study, he got to sleep in my hospital bed!

I had a double room - but never had a room mate.