"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.


November 22, 2007

Thankfulness on Thanksgiving




Thank you Lord
for people who love me
and are patient with me,
for people who demonstrate your faithfulness
and your kindness,
for your everlasting presence
through good times and bad,
for your grace, mercy and love
that is always there.
When my eyes are blind
and I forget to look,
you still right there
with my name upon your hand,
loving me and
comforting me.
When things go wrong
and I feel lost,
I am not alone for
you are there beside me.
Thank you for giving me
Hope,
a Future,
and most importantly,
yourself!
~Melanie (C) 2007 Thanksgiving Day





November 17, 2007

Homecoming

"Autumn Wreath"
I drew this during my med trials at Vanderbilt


I'm home from Vanderbilt!! Whooooo Hoooo!

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!


Love




November 5, 2007

Last Minute Prayer Requests

I awoke at 6 AM this morning - with stomach cramps, nausea, shivers, shakes, heart pounding, sweats and chills. It was awful.

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!



























Thank you for your prayers.

November 2, 2007

Getting Ready To Go


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:

Melanie Pruitt
c/o Bonnie K. Black, RN, CNP
Research Coordinator
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

Little Dancer Hugs

Yesterday, I had a physical therapy appointment. It's in the same building as my daughters dance studio. She's a Sr. and is dancing some great parts in the Nutcracker this year. But, as a HS credit, she's learning to teach creative dance and early ballet classes.

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!!!


"The young women will dance for joy,
and the men—old and young—will join in the celebration.
I will turn their mourning into joy.
I will comfort them and exchange their sorrow for rejoicing."
Jeremiah 31:13

October 25, 2007

Frenzy and Fall

THE FRENZY:

Yesterday, when I turned on my computer, I was very concerned by the look of the screen as it booted up. I'm worried I may be losing my hard drive... again.

So... I began running diagnostics and found an error... but to complete the diagnostics I have to use a disc that came with my computer.

I love my laptop, but I must admit, I've been through two hard drive crashes - both covered by the warranty - but a pain all the same. So, I've kept these discs in a special place for several years now.

Well, wouldn't you know... I went to find them and they arent' there!

As it turned out, I had an amazing amount of energy yesterday. So, I began cleaning. Then I began searching for these diagnostic discs. I cleaned and cleaned until I was so tired I was ready to drop. I had an amazing cleaning frenzy... something I haven't done in a long time.

No... I didn't find the discs. But I feel so good getting some organization done AND, I also got two ACEO's begun. One watercolor and one Oil Pastel.

I went to bed and awoke with a horrible headache, achy joints and sore muscles (probably from cleaning LOL)

THE FALL:

Well, unfortunately, the energy spell only lasted a day. I awoke totally wiped out. It's disappointing to sleep through the night and awake feeling more tired than when you fell asleep. This is one of the issues that we will be addressing with the doctors at Vanderbilt.

But, though I still haven't found the computer discs, and I was completely worn out today, I really enjoyed my day. I love autumn and it was a cool sunny fall day today. I have a lovely fall smelling candle burning, and I was able to complete those two ACEO's!

So... as I say goodnight - I'll share one of the ACEO's with you. It's called "Autumn Romp". I painted it from a reference picture taken by another artist on WetCanvas! (a wonderful website for artists). It's the first horse I've ever tried to paint. It really reflects the feeling of the weather here today!

Click here to see it on eBay

Goodnight everyone!

October 23, 2007

I'm an Otter!

Last night I watched a video about an otter family that lives in a remote lake in Yellowstone park.

It was interesting, watching them go through the seasonal changes... but mostly it was just entertaining to watch how playful those otter are! They roll around, sliding on the ice, swimming circles in the water, playing with everything and they find and everyone they meet - even the methodical hard working Beaver!

As I watched them, I was aching to be free again to be playful and run and swim and twirl... sometimes this illness makes me feel very claustrophobic!

I haven't done much today to tell about. I cut up some Yuppo - a new paper I want to try painting on... but once I had cut the sizes I needed I was too tired to do more.

I had to take a nap - and yet I couldn't completely sleep. My toes suddenly became freezing cold. Once I warmed them up with a rice bag - my whole body was on alert, while at the same time too tired to do anything. I'm sure that sounds very foreign to anyone reading this who doesn't have dysautonomia. It's a strange experience.

I have a lot of favorite videos marked on YouTube. Here's one that always gives me goosebumps and makes me smile! Be sure to watch it all the way to the end... it's not very long. Hope it makes you smile too!





October 22, 2007

Good Morning World!

Good morning to all of you who visit my blog!

We've had so much rain in the past week, here in the Northwest... it's kind of nice to wake up to a brighter morning.

I didn't get any painting done yesterday. Instead - I came down with a cold! Yep! Ellen has been sick all week (thank you Scotty) and I've got it. But though I feel more yucky and achy than normal, it's not too bad yet... so maybe my immune system will kick it without it getting as bad as Ellen's. I just have a scratchy throat and a little congestion. AND a headache...

Yes... as Emily said in her comment yesterday - it IS scary to go off all my meds! Especially the two that keep my heart rate down. So I'm having higher heart rate when I'm up and I come closer to passing out than normal. This is exactly why I could NOT travel to Vanderbilt by myself this year!

So - what did I do yesterday? I did take a nap. (But my sleep is so unrefreshing. It's disappointing to need so badly to sleep - but then wake up feeling as sick and tired as when I fell asleep!)

I watched a most interesting movie - about Cuttlefish! I've never heard of them and wondered how in the world NOVA would make a full show about one fish. But wow - they are SO unique and interesting - the most unique of God's creations that I have ever seen!!!

Bill and I had some time together - but it's a challenge to find things to do when I feel crummy. We used to love to play Backgammon, but after playing it for 6 hours at the beginning of my labor with Ellen... we were very Backgammoned out! LOL! But seeing as it's almost been 18 years... we pulled out the old Backgammon board from under the bed and had a fun time playing - except Bill won both games. (I'm just a little competitive - that's sarcasm LOL)

Last night and this morning, I've been thinking a lot about the verses in Zephaniah 3

14 Sing, O Daughter of Zion;
shout aloud, O Israel!
Be glad and rejoice with all your heart,
O Daughter of Jerusalem!

15 The LORD has taken away your punishment,
he has turned back your enemy.
The LORD, the King of Israel, is with you;
never again will you fear any harm.

16 On that day they will say to Jerusalem,
"Do not fear, O Zion;
do not let your hands hang limp.

17 The LORD your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing."


What a comfort to know that the LORD my God is with me. That he delights in me. It's almost overwhelming to imagine him rejoicing over me with singing - but it sure inspires me to live up to being the woman He has asked me to be.

It draws me to love him even more. And as I do... His love quiets my heart and helps me face one more "sick" day.

So with Hope in my God, and as I treasure his delight over me... I say goodbye for now as I head off to see what this day holds.

Thanks for sharing this time with me.

October 21, 2007

What is Melanie up to?


I really struggle in getting these blogs out. My days don't hold a lot of distinction and I wonder what kinds of things my blog readers would like to hear about.

So I thought I'd start just posting some short posts... "What I did today" or "What I thought about"...

This morning is Sunday. I'm currently listening to my iPod with a variety of music by David Crowder, Chris Tomlin and a variety of other worship songs.

I listened, online, to Bill's sermon from last week. I thought about one of the songs I have on my iPod. "When God Ran" (sung by Phillips Craig and Dean). Here's a beautiful YouTube video with the song:(you'll have to pause the "Background Music" on the right to watch it)




I like to needle felt while I listen to sermons. So I worked on a new Wool Painting - a fall leaf on a dark brown background. I'll post it when it's done.

But my eyes are very dry and stinging today so it's hard to focus on such details. I don't know why this is - except - I am in the midst of weaning off all my medications in preparation for my trip to Vanderbilt. I have to be off all medications that affect my any part of my nervous system - but especially the Autonomic nervous system. Maybe this is why... I don't know.

What will the rest of my day hold?

Well, I have several autumn watercolor paintings planned in my head. I have one ACEO sketched. But I don't know if I'll be able to focus and do any of these or not... we'll have to see. I know I'll watch some football and some Little House on the Prairie. We've checked the DVD's out from the Library which has been fun.

Hope you all have a blessed Sunday.

Love




PS: The painting above is my second Oil Pastel Painting! I finished it last week. You can check out my eBay store to see if it's still available for purchase.

October 5, 2007

Strength


"Strength"
ACEO - Oil Pastel

I don't often create abstract - but every once in a while it just seems to come out. This is my first attempt at using Oil Pastels. As I began, I knew I wanted to paint a cross - as I listened to a new worship CD a dear friend has sent me. But what exactly it would look like I didn't know.

It's titled "Strength". Though the cross at first appears to be falling over, you can see it's solidness in the shadow. And the clouds over head, though darkening the sky, are highlighted with bright gold and sunlit streaks are allowed through. The golden streaks appear as rain - and yet are lit up like sunshine.

Though life is difficult and we may face unexpected trials, the power of God is strong and holds us secure. This irony - things look bad, but God has a good plan - is what this piece of art represents.

I continue to hold onto this hope. Here are the words of a song on my new CD that have really encouraged me this week...




Jesus, Draw Me Ever Nearer
words by Margaret Becker
music by Keith Getty - recorded by Keith and Kristyn Getty
www.gettymusic.com

Jesus, draw me ever nearer
As I labor through the storm;
You have called me to this passage,
And I'll follow, though I'm worn.

May this journey bring a blessing.
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest
Keep my spirit staid and sure;
When the midnight meets the morning,
Let me love You even more.

Let the treasures of the trial
Form within me as I go-
And at the end of this long passage,
Let me leave them at Your throne.


Another friend sent me this wonderful YouTube video I also wanted to share. It's beautiful and creative art! Enjoy!!


The "Strength" ACEO is up for auction - Click Here

September 30, 2007

An update

I've had quite a few emails and messages from caring friends, wondering how I'm doing. I haven't been heard from much in the past two weeks... not much email, not much online chatting, no blogging, and not even much eBay group visits.

So, I thought it only fair to all those who have been concerned, to give a quick update.

I have been quite down and out this past couple of weeks. Don't know why or what is going on - may just be one of those cyles I have to endure.

Last week, I saw both my Family physican and the Nuerologist (who I see about once a year). Both are concerned and strongly encouraged me to take advantage of an offer I've had to go back to Vanderbilt University.

I will be having some nerve testing this next week - at the same time and in the same building that Bill will be seeing a Rheumatologist for probably RA (a condition he's suffered with for years, but we've decided it's time to get it under control with medication).

The nerve testing can be pretty painful - but will be very helpful in discerning the cause of some of my newest symptoms. She also ran a battery of tests through bloodwork which will also be helpful.

After long, hard processing, prayer and consideration, Bill and I have decided that the very difficult trip to Vanderbilt is our best option right now. The specialists there are up to date on all the current research and there is one doctor in particular that I really connected with when I was there in July of 2006.

However, unlike July 2006, there is no way I can make the trip myself. I am even concerned about how I will do traveling with help. So Bill will have to travel there with me, come home, travel there again to pick me up and travel home again. Poor guy - what a sweet husband I have!

I will be there as a study patient again - though for very different research. I will get the sleep study I so badly need, under the watchful eye of a ANS specialist. I will participate in several other studies including one that has been recently funded by the CFS Association to research the connection between CFS and ANS dysfunction. But the best part is that my favorite doctor will be there the whole time and I will be able to pepper him with my questions.

I don't leave until November so I'll be blogging again - several times, I hope - before I leave. But this is the latest news in my life,living with a strange, unusual, and, as of yet, undefined chronic illness.

You can pray especially for my "Patient Endurance". It's been down in the lowest numbers lately. Pray for my relationships with all my loved ones and that I will continue to strive in my Primary and Secondary callings in life: to Love God and to Love others.

Thank you for checking in on me!
(No, sorry... no new art to show this time. BUT... be watching! I have a friend traveling through Italy on a garden tour right now and she's taking lots of pictures for me to paint! I can't wait!!!)



PS: Do any of you have a MySpace page? I have one Click Here I just updated my page with a beautiful fall background!

September 17, 2007

God is Good

My soul is at rest - for the moment. My heart is content - for the moment.

But it's a constant struggle to stay that way. I continue to reread the verses below, and cling to Hope - not hope in being healed or in everyting getting fixed, but Hope in God - my source of strength and endurance.

Many, many years ago, I read a wonderful book by Larry Crabb titled "Finding God". It's a great book with a challenging message - "Do you really believe that God is good?"

I've been challenged - ever since reading that book - to recognize God's goodness. But of course, during the hard times it can be difficult.

I've noticed though, that people in difficult times, are still able to say "God is good", but the disconcerting thing to me is that it is always a phrase that is used when something happened that we wanted to happen - a surprise, a positive change, an unexpected gift... these things are what lead us to say "God is good".

Back then, I thought that people should be able to say that God is good - even when life stinks. I wondered if I would ever be able to do such a thing.

Well, yesterday, in the midst physical pain and fatigue, in the midst of lonliness and loss, I heard myself say - "God is so good". I actually shocked myself. Nothing good had happened - no new answers - I wasn't feeling better - I hadn't won any prizes... The only thing that had happened was that I had read God's words in the Psalms of David. And my mouth uttered the words "God is good".

Wow! Something I had always hoped about myself, was shown to be true. I CAN praise God when things STINK! I DO believe God is good - no matter what circumstances I find myself in. I greatly rejoice in learning this about myself! And I wanted to share it, in case it encourages others to believe in His goodness - even in the midst of their own dark valley's!


***


I also want to share something else about my life. I said above that I am lonely. That is only at certain moments. One great thing God has done for me through this illness, is to provide me with new friends. Though I've been removed from the normal society of church and dance studio friends - he's provided me with awsome online friends.

Art has become a big part of my "sitting down" life, and on eBay I have found a place to chat and spend time with other artists. I just posted this on my art blog, but I'd like to share it here too!


***


I've long admired Amy's art! She and I are both Washingtonians and we belong to several eBay art groups together. So when the chance came along for me to do a collaboration with her, I, timidly, accepted.

What fun it has been!

First, we each began an ACEO (2.5"x3.5") on hot press Artistico watercolor paper. We both use watercolor and ink in our work as well as watercolor pencils and occaisional other media.

Then, we mailed the half finished ACEO to the other one, and we completed each other's ACEO's!

Starting one wasn't as scary as receiving one! I thought a lot about the animals and style that Amy loves to do and so I began with, what I hoped, would be the perfect springboard for her creativity.

Here's what I sent to her:

















Here is what Amy sent to me:



















It sat a few days while my mind whirled with a few ideas. I kept looking at those two cats... they seemed to say to me "What?????" with quite an attitude. I thought about what it was they might be doing - one on top of the other. Suddenly, the completed painting came into my head. A fish tree... they were attempting to pick the fish and got caught!

Here's the finished ACEO:
"Picking Fish"



It's up for auction on eBay - you can click here to go to my auctions.

Amy has put her completed ACEO up for action too! Here's the completion of the half I sent her:
"Tree of Life"



Click Here to go to Amy's auction! A link to her blog is on my art blog if you are interested in more of her art!

Thanks Amy - this was a lot of fun!

September 11, 2007

HOPE




I am in several art groups on eBay. It gives me a great place to learn, make friends and talk art. eBay has recently "upgraded" their groups. One of the best additions is that each person can have a personal avatar - a small picture that represents them on each post they make in the group. This is especially fun in an art group full of creative people! Some of us have one avatar that we never change - others change their avatars often! I like change so I fall in the second group LOL!


This is my newest avatar. I painted this in the middle of my last 5 month down time. As I watched this little leaf holding on through the storms - I was reminded and encouraged to keep clinging to God and hanging on during my most difficult days.


I've hit another down time... don't know how long it will last, and it's worse than the last one which still scares me a bit.


BUT - I am clinging to HOPE!


Right now, my signature (siggy) on the bottom of every post I make on eBay reads "No wonder my heart is glad and my paintbrush sings. My body rests in HOPE!"


Here are some great statements of Hope that I am holding tight to, resting in, and rereading when I get scared. I hope they encourage you too! (most are Bible verses - but not all!)


Be strong and take heart, all you who hope in the LORD

~Psalm 31:24


“Hope is faith holding out its hand in the dark.”

~George Iles


But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love

~Psalm 33:18


May your unfailing love rest upon us, O LORD, even as we put our hope in you

Psalm 33:22


Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

Psalm 45:5 AND 11


"If our hopes are being disappointed just now, it mens that they are being purified"

~Oswald Chambers


Find rest, O my soul, in God alone; my hope comes from him.

Psalm 62:5


But as for me, I will always have hope; I will praise you more and more

Psalm 71:14


I wait for the LORD, my soul waits, and in his word I put my hope

Psalm130:5


O Israel, put your hope in the LORD, for with the LORD is unfailing love and with him is full redemption

Psalmn130:7


"The law works fear and wrath; grace works hope and mercy."

~Martin Luther


But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint

Isaiah 40:31


I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.

Lamentations 3:19-23


The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.

Lamentations 325-26


Be joyful in hope, patient in affliction, faithful in prayer.

Romans 12:12


I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him

Romans 15:13


What a wonderful excercise this has been. Reminders I need to carry with me moment by moment. I hope you are encouraged too.







September 7, 2007

A Perfect Comparison

I read this on a website recently and it really hit home:

"This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization."
~Laura Hillenbrand, bestselling author of Seabiscuit


Wow - what a great way to say it! I talk about being fatigued and even the most compassionate, loving people imagine I am being burned by a match - when, what I am really talking about is living through a nuclear bomb!


On the sad side of things... I have really hit bottom this week in fatigue. This means even conversations are a strain.


But on the more positive side of things, I have found another very easy art to do. It is called needle felting. It takes very little energy and I have even made two ACEO's this week! Here's one that's up for auction on eBay this week!






I can do these little needle felting designs easily while I listen to my audiobooks - I just received a George MacDonald and CS Lewis book from the library PLUS a couple of my friends have been passing around a good audiobook and it's my turn to listen to it!


Prayer requests? Well... patient endurance... and guidance in medical decisions.


Thanks for praying for me and checking in!



PS: If you want to know more about how I do these needle felted ACEO's - check out my art blog click here. Oh and BTW - just in case you didn't know - and ACEO is a miniature piece of art that measures 2.5"x3.5" , just like a trading card. They are very collectable!

September 2, 2007

It is NOT well with my body...

It's been hard to follow my last post. My body is not doing well and though it IS still well with my soul - my heart grieves as I face this time of difficult, new and debilitating symptoms.


There's not much I can tell you. I have new joint pain. One day last week, my legs were so shaky and weak I couldn't get up the steps into my house. Today is the first day in week that I've even felt able to process enough words to add anything to my blog.


Am I scared? Yes.
Am I content? No.
I wish I could switch these answers...


Am I thankful? YES! At least I can say I AM thankful!!!


I am thankful that my friend Melissa has survived yet another bought with Sepsis. (This is a picture of Melissa and I when I was able to spend a couple of hours with her in Ohio this March). I am thankful for my computer and I am thankful that I have been given faithful and loving friends, like Emily, and Kristen, and Katey and Patti. They pray for me, process with me, laugh with me and cry with me. I am thankful for all the fun and wonderful art supplies around me. I am thankful that the library will mail me all kinds of educational videos. I'm thankful for a daughter who cooks for our family, a son who will take care of all kinds of needs around the house and a daughter who brought me a huge and delicious piece of chocolate cake! I'm thankful for my faithful husband. I am thankful for my recliner chair and my soft bed and pillows. I am thankful for medications.


There is so much to be thankful for!


I know God will help me with my fears and my contentment. He continues to remind me of my Primary calling in life - to LOVE HIM!


So today - I listened to one of my favorite online preachers - Alastair Begg of Parkside Church in Cleveland Ohio. He has such a wonderful Scottish accent and such powerful and truthful teachings. I am in the process of listening to a series called "The Strength of Weakness".... pretty apropos don't you think?


You can hear Alastair on the Truth for Life website http://truthforlife.com/


Thank you for checking in on me and reading my blog. You can pray for me to patiently endure this down time, to have wisdom in pursuing medical help, and that, soon, I could again answer "No, I'm not scared" and "Yes, I am content".








August 12, 2007

It IS Well With My Soul




Last Saturday Evening during our church service, we sang this hymn "It is Well With my Soul" by Horatio Spafford. It has a great story behind it and I will give you a link at the bottom of this entry so you can read the story yourself.

But as the people around me were singing, I started sketching. This piece of Folk Art was forming in my brain.

As I worked on it this week, I realized that I live fully in both the top and bottom half. A huge storm swirling around me - but peace in my heart because all is well in my soul.

But I also realized something else about myself. Though I hint at, and most everyone knows there are changes and challenges in my life - I actually attempt to hide the storm side of things. That's not a very honest depiction of my life AND it lessens the impact and truth of the peace that lies deep in my soul.

I'm having a very difficult time standing up right now. My heart rate races and my head spins. When I'm sitting down I feel like I'm in between a dream world and the real world.

So this blog entry is an attempt to be more real - more honest about the storm at the top of my artwork, in a desire to emphasize the peace and joy God puts in my heart.

Lots of people think I look and sound great. And I do - for a few minutes! But that's because I can exert my happy energy for a short time - sometimes even for a half hour or so. But, even though that happy face and voice are REAL - afterwards, my body rebels. The side of my face goes numb and if I try talking too long, my words begin to jumble, my lips shake and I feel weak and exhausted.

Yesterday, our church had a parking lot party - an outreach to our neighborhood. I hated for Bill to go to one more thing alone, so we decided - though very uncomfortable for both of us - we would go with the wheelchair!

It was very fun for me. Fun to be by Bill's side at a church function. Fun to see the activity and say Hi to several people I hardly ever see. I even sat in the shade and had a really nice visit with an old friend!

We had a nice talk - but I think she could tell I was wearing out by the end. And sure enough... I was down for the rest of the day. I didn't fake my enjoyment and my enthusiasm - but it did cost me a lot. These type of situations cost me a storm of symptoms for hours and sometimes days afterwards!

I'm not complaining! I'm trying to be honest. It's hard for me to be honest about my health storm. I like to take lots of medications - go out in public for a short time and "look" normal... and then hide while the storm overtakes my body.

But if I always do that - how will you know how true the words to this hymn are in my life?

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.



In one of my favorite books in the bible, one of Jesus' followers said:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.
Philippians 4:12

This is what my art piece is trying to say... I know the storms, the hardships, the grief that I must go through in this life. And I know the peaceful, fulfilling, joyous times. Whichever is my lot - at any particular moment in life - it's OK. Because, my soul- the center of who I am, is safe in God's hands. And nothing, not storm nor plenty can that away from me!


If you'd like to read more about the author of this hymn and his amazing experience just prior to writing it Click Here




PS: This Art Piece is up for auction Aug 12 -19 Click Here

August 9, 2007

Showing Understanding and Kindness



My husband, Bill, is a Pastor and has been teaching a short series on Psalm 23. It's been a very fun series - especially as we process together some of the issues like "fear".

But I only tell you this to set up a different story I wanted to share. It's always very important to me to get to church when he's speaking. But as I wrote in my last update - I'm not doing very well. However, I do have some medications I can take very occaisionally, that help me get out and stand up for a little while.

I was able to make it to church this week and really enjoyed Bill's message. But I was very very tired by the end. It's quite a long walk from my seat to the car. Sadly this often means I breeze by many old friends with a quick wave.

This week, two women stopped me. They were so excited to see me - it warmed my heart - though my heart rate was flying and things were spinning and I was hoping I could make it to the car with out stumbling or fainting.

But as I stopped and gave them each a quick greeting, I explained that I just couldn't stand any longer and I was sorry that I couldn't stay and talk.

To my surprise, they both offered to sit down on the ground with me. I quickly sat and they both sat with me. So there we were - the three of us - sitting on the ground in the middle of the huge new entryway to our new church buiding. We had a nice chat and it was so refreshing to get caught up with a few old friends.

Now that it true kindness and compassion. I have never felt more understood by someone outside of my own family than I did that morning. All I had to say was "I can't stand up anymore" and they both sat down with me!

Thank you two!!!! (you know who you are!)

Love Melanie

PS: If you want to hear these great Psalm 23 messages Click Here and go to the "Sermon's Online at the top. Hope you enjoy them as much as I have!!!

July 31, 2007

End of July - End of Good Month

Well... tomorrow it becomes August. Wow - where did the summer go? I had the best month of health I have had in... at least a year! Wow!

But - at least for now, that is gone - like July is gone.

I've been sitting here for an hour, trying to put into words what it is like to have a month like this end... but I can't. I can't get my brain to work, I can't explain what the fatigue is like, I can't even put into words all the fun things I did this past month.

But I felt I needed to touch bases with you all. So instead of words... let me share some of the "worship in art" that I've enjoyed this month!




























I also spent a lot of time working on a very special comission and I hope to post about this soon!

Thanks for visiting!!!