Another very groggy day. I had my doctor appointment today. Dr. Li spent almost an hour with us. We went through Dr. B's notes point by point and came up with a game plan. We feel there is a slight improvement since I started the drug, although it is hard to determine with me being so groggy. We hope the symptoms of grogginess will gradually lessen as my body adjusts to the drug. Dr. Li said it will also take several days to weeks for the full effects of the drug to be known. So, we can hope for continued improvement in my autonomic symptoms that I live with from day to day.

I'm tired again, so it is off to bed.

I did pretty well at my first aquacise class. It was pretty tough in spots, but I survived. I had a hard time using my arms, but just slowed down when I couldn't breathe. I really liked the class.

I am really tired tonight so I am heading off to bed.

Having a hard time adjusting to my new drug. I didn't make it to church at all today. I'm am so tired and lethargic. Dan says my speech is slurred. He went to church this morning, but he did not go tonight. He said I just didn't look good and he wasn't comfortable leaving me.

I figure I will adjust to the med in a couple of weeks. Dan asked me if I could tell a difference, but I feel so out of it, I can't tell which end us up.

Tomorrow I start my new aquacise class so I hope I'm more lucid in the morning. I see Dr. Li on Tuesday. We will see what we can come up with.

I took my med earlier tonight so hopefully I won't drag so much in the morning.

We lost a great friend today, Bandit Shelton. He was such company for us whenever we were in Florida. He will be sorely missed. He died from a severly enlarged heart. He was only 4 years old.

I started my new cardiac drug last night. Dr. B had told me to take it at night as it would make me drowsy. Boy, he wasn't kidding. I just can't get my brain unfogged. I am so groggy. I hope it wears off soon. I have things to do today.

Tonight I will take it earlier!

The doctor's office called today and they called my script into the pharmacy. Dan checked with the pharmacy on his way home, they had to order the med and it will be in tomorrow! The down side is that I have to go into the Doctor's office every week for monitoring even though I have that electronic nurse who hollers at me twice a day to take my vitals. I will hash that out with the doctor next week when I have my official appointment on the 28th.

I had a great Birthday today. I went out to lunch today with three Mrs. Adam's and two young men also having the last name of Adam's. They spoiled me by having a cake waiting there for me and gifts from my favorite store and bought my lunch! Then, they took me shopping and helped me and kept an eye on me. It was fun.

I received several phone calls, birthday cards via snail mail and email and many hand delivered cards. Little gifts just kept popping up from about Sunday on. Everybody has been so very generous, it just amazes me!

Dan spoiled me with new ear pins (a different kind of pierced earring, they are my favorite).

I stayed up way, way too late last night doing Cowboy State Games paperwork, so after Dan left for work this morning I took a nap until 9am. Then I was off and running to make it to my lunch date.

I made it home by 3:30 after I finished my errands. Then I took another nap with Shi's help.
Dan ran home after work to pick up Ozzie and I and take us into church. It was good to be back with Awanas kids. They always make me smile.

Yesterday I did get my drivers license renewed.

Well as I mentioned before I'm very tired. So, I am signing off.

I was having a good day with good AM vital signs. I was busy all day with laundry and I even had a very small lunch meeting at my house for Cowboy State Games Figure Skating Competition. I felt fine for all of that. Then at 6pm when that electronic nurse goes off ( I so wish I could pick a male voice) my heart rate was 102, yes I took my meds today, and my blood pressure was 82/56! And today was a florinef day! Most bizarre! I felt worse on Saturday and my blood pressure was much higher!

Very slick out this evening. Earlier today the Casper Mountain Road was closed due to 5-6 foot snow drifts and some sliding snow. (They hardly ever have to close that road as so many people live up there and commute to Casper daily. Plus the final day of Cowboy State Games skiing events needed to take place today as well.

Well, the finals of Ice Dancing are tonight. It should be fun to watch. Tomorrow night the ladies short programs, what I've been waiting for...

Wow, Saturday was NOT a good day. I felt horrible and was stuck on the couch for most of the day. The good thing is that I felt soooo bad I didn't care that I was on the couch all day.

Today, on the other hand, is an outstanding day. It was really good to get back to church and see everybody.

I did really well today!! I did lay down and take a one hour nap and then was back up and drove myslelf into choir practice. (Dan was missing...out snowblowing in Paradise Valley)

The kids are all doing great and are settling back into their routines nicely.

I have added some pictures from our trip starting with the Jan 30th blog entry. Enjoy.

Oh, the picture above is Dan and yes, that is a Barbie Doll in his hand...

I forgot to mention that I signed up for an aquacise class. It starts at the end of February is on Mon and Wed for one hour. I thought this would be a good place to start.

What a very busy week this has been. Wednesday woke up to quite a snowstorm. A LOT of snow and it kept snowing by evening we were pretty well dumped on. They cancelled Church and Awanas (they never cancel). Schools were cancelled for Thursday (The first time in three years). And business were closing early on Wednesday so people could get home.

People were getting their cars stuck on the side streets (were most people live) and were just abandoning their cars. Dan snow blowed and snow blowed and snow blowed.

Thursday things were moving, but not very much. Dan snow blowed and snow blowed and snow blowed (he helped out two of the neighbors). Dan didn't go to work Wednesday or Thursday.

Today, the schools are back open, starting an hour later and the rural buses are not running. The snow has stopped, it's over my knees. (No smart comments from the peanut gallery please!!). But, over night our temperatures plummetted and the wind picked up a little. So, now I can't go out because I'm not supposed to go out in extreme cold. It was -11 when I got up this morning with a wind shield factor of -35. It has warmed up a little, but not much.

I guess it is a good thing that there is no skating tomorrow.

I hope we get to go to church on Sunday. It will be good to see everyone again.

Yesterday I felt pretty good. Today I didn't feel good before I even got out of bed. I have definately noticed a difference in my symptoms at high altitude vs. low altitude.

We are home. Very tired, but glad to be home. The kids were really glad to see us.

I've been taking the Florinef for almost a week straight to get my blood pressure out of the 80's and 90's, today it was up to 115/?(I forgot the bottom number).

We have been waiting for me to have a beat red in the face spell to begin this lab test and of course it happened on the plane home yesterday. So, we will just need to wait for another episode. In the meantime I need to check with FedEx on what I need to do to ship it with them.

This test is not done in Wyoming, so I need to ship the sample back to Vanderbilt.

I also need to get my results from Dr. B to Dr. Li so we can make a plan. We have a lot of things to set up, start and buy. My appointment with Dr. Li is not until the 28th and I really want to start my new med much sooner. We will see what I can come up with.

I absolutely needed a nap today. Then I headed into the ice rink for a lesson and a class.

I'm trying to find a very low impact aerobics course, something tells me I'm going to wind up at the senior center. Do you think they'd let me in?

Today was Birthday Party day for Hailee, she turns 5 on the 14th but her party with all of her friends was today.

I am feeling much better today. I have done a lot of resting the last couple of days so it is about time. Yesterday my blood pressure was a whopping 88/37. I'm not sure what's going on but that is probably why I've been sleeping so much.

But, I am still up and feeling good today and survived a Birthday Party with 8 Five year-olds.

Not sure what we are doing tomorrow. We head back home on Monday and I am sooooo ready to go home. I miss my kids!!!!

Yesterday we relaxed around the pool and went out to dinner last night at a place called, "The Lazy Lobster." It had wonderful food and we really enjoyed it. Today we are going to run some errands and then we are going to try and go to the Botanical Gardens.

I feel much better today. I have noticed being at sea level that I don't have near the episodes of orthostatic intolerance. That's where I feel like I'm going to pass out and need to sit down now. I am able to take a shower without needing to sit down and I'm able to do my face and hair without sitting down.

My blood pressures have been low while I've been here. 92/48, 94/50. I'm am still fatigued and off balance, but I feel we have been over doing my activity.

I have had the opportunity to research the new disease that the doctor in Nashville thinks could be a factor for me. I had mentioned in my previous blog about his extreme interest in my severe episodes of facial flushing and how we are to get some lab work done when this happens.

The name of the disease is Mastocytosis. It addresses a lot of the symptoms that I have and it also causes episodes of hypotension (very low blood pressure and faintness). I will include some links to some websites on Mastocytosis. The good thing is it sounds like there are some drugs that can help this!

But, remember, I have not been formally diagnosed with this yet.

http://en.wikipedia.org/wiki/Mastocytosis

http://www.niaid.nih.gov/factsheets/masto.htm

Yesterday and Today we went to Myakka River State Park. Yesterday we climbed a 75 ft tower, yes I took many, many breaks on the way up. It was beautiful, we saw above the canopy of the jungle. This also involved walking across a canopy bridge 25 ft in the air, it is at tree top level so that you can see the foilage and wildlife close at hand. I didn't do well after climbing down the tower. Both of my thighs seized up with charley horses and I couldn't even stand up straight. All my years of skating, walking, riding bikes, etc, etc, I had never had that happen. We are thinking that being on the Florinef my have decreased my potassium and led me to that misery... (I am still walking funny tonight...)

Today, we went on an airboat ride and saw a couple bunches of alligators sunning themselves. Their airboats are the world's largest. After that we took a Tram Safari ride into the back country of the park to find out what life in old Florida was like. The ride included a wide variety of sights. We went through shady hammocks, pine flatwoods, fertile marshes and sunny prairies. We saw many, many forms of wildlife. We saw smaller alligators, anhinga (snake birds), sandhill cranes, osprey, squirrrels, and many other kinds of large birds.

They have a two websites about the park: http://www.myakkariver.org/ & www.FloridaStateParks.org/MyakkaRiver

Well, I am incredibly exhausted today. My stomach was in an uproar and my legs and joints just hurt everywhere, so I'm going to go lay down. Tomorrow is a much needed day of rest, Dan promises...

We went to the beach today. We ate lunch at a wonderful place called "Sweet Tomato". It was a wonderful soup and salad buffet. All homemade soups.

We drove up to Turtle beach and checked it out. Then we headed to the Siesta Key public beach. Several people were flying really cool and elaborate kites. It was really fun to watch them. I was not able to walk as far as we would have liked, but I kept running out of air and had to stop. But, we had a very nice time and I just love the Siesta Key sand.

I was very, very tired by that time, so we headed back.

Not sure what we are doing tomorrow, I hope rest is in the plans. Oh, Dan did get to go out in the boat again this evening. He went yesterday as well.

We made it to Florida without any problems. I was really tired yesterday and slept a lot on the two plane rides.

Dan was able to fish some today.

Last night we watched home pictures on the the tv and we learned the difference between a

Florida fire and a wyoming fire.

We have a busy day planned for today so I need to finish getting ready.

Will write more activities and adventures later.

Our last day in Nashville :(

We started it out with a party at breakfast. We had such a great time. All the wait staff and the manager posed for pictures. When I get back home I will insert the pictures into my blogs. We had so much fun. And they bought us breakfast! (two days in a row). Lloyd gave me a copy of his un-yet released CD and I had him sign it. Dan took our picture together. Dan also had his picture taken with Mr. Browner, a Super Bowl Winner when he played with the Bengals and a heisman trophy winner.

Time flew by this morning and before we knew it Les Repas was here to pick us up and took us sight-seeing on the way to lunch. Then we went to their house and visited. I started getting really tired so they took us back to the hotel. I crashed on the loveseat again. I finally woke up at 6pm and we started packing :(.

Now, I am waiting for Dan to finish and then we will go out for some supper.

So far the first part of our trip has been so much fun. It is rainy and a little cool here but still warmer than home, except for the humidity of course.

I'm feeling run down today, but we have been keeping pretty busy.

Okay, I know I'm behind, but last night I was going to blog and I fell asleep on the loveseat in our room (I know just like home...)

Wednesday's Events

Just to follow-up on a couple of things that I omitted about my visit results to Vanderbilt. The possibility of high altitude affecting my symptoms was discussed. Dr. B encouraged us to truly spend some time comparing vital signs at sea level before we made any rash decisions about moving. He said and if you do want to do that it can't be any where to hot as that will exacerbate your symptoms in the same way as high altitude can.

He also suggested that I try oxygen when I am symptomatic at home.

Another significantly new finding that those tests revealed was that while off my meds with my autonomic system under stress my blood pressure demonstrates a "dramatic increase in blood pressure with a tendency towards orthostatic hypertension."

Wednesday's activities:

We slept in. We ate breakfast downstairs with all of our "friends" Chris, who is the restaurant manager, Lloyd (his first single is being released in March) and Corey (he is a songwriter). The day-time hotel shuttle driver is also a songwriter who has met the criteria to be allowed to sing his songs at the "Bluebird Cafe". As you can see we do indeed have a home away from home here.

After breakfast we went up to the room, got into our suits and shorts and headed for the workout room and then the hot tub. After we lazed around for a bit we headed back to the room where we leasurely got ready to go to Opry Mills. We had to take our time getting ready to go as President Bush was in town and the roads were closed around the airport and Opryland (he spoke at the Grand Old Opry auditorium). So, we waited around until he was done. Then we took a taxi ride to seek out new adventures.

We ate at the "Rainforest Cafe" It was like eating in a jungle. It had thunderstorms, moving gorillas, moving elephants, birds, butterfly's and large aquarium's with salt water fish of every color everywhere!

The mall had wheelchairs for no charge so that was a huge help. I'm getting soft and Dan is buffing up pushing me around!

We came back to the hotel and I crashed hard on the love seat.

Thursday - Today's notes and activities

We got up early and went and had breakfast with all of our buddies. Then our front desk buddy, Alameda, loaned us a wheel chair from the hotel and rounded up our shuttle driver, Jim to take us "downtown". Jim, having a slow day gave us the grand tour of downtown. We went down Broadway and saw all of the honkey tonks, where if you want to be somebody some day, y'all start singing and pickin' there. Then the thing is that once you become "famous" you go back and sing on Broadway for free.

We saw the riverfront area where they hold fan fare every year. And, many, many other landmarks, the capitol, ect, etc.

After quite the downtown tour he dropped us off at the Country Music Hall of Fame. We spent a great portion of our day there. It was fun, entertaining and very informative.

Did I mention that it was raining here all day long?

So, after the Hall of Fame we headed off into the drizzle. Lead butt and Hercules... (I'm lead butt, he's Hercules). We went by where their NHL arena was at. There was a line of people getting autographs from the players as they came in to play. Well guess WHAT!!! Those fans were wearing Avalanche Jersey's. Now, if you live in Wyoming and like hockey, well most of us are Colorado Avalanche fans. Yep, we could have gone to an "Ave" game, right here in Nashville without having to deal with all of that Denver traffic!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

But, we kept going. Dan pushed me up and down and around and down (it is very hilly here, kinda like San Fran, only smaller hills) You thought I was kidding when I called him Hercules!
All this time it was still very wet out and now the drizzle had become full blown rain. We wound up buying an umbrella and a Nashville long sleeve t-shirt for me as my coat was now soaked. Dan, on the other hand was proudly wearing Gortex & waterproof boots. He remained warm and dry.

Next we headed off to have supper at the World Famous Wildhorse Saloon. They have a huge dance floor, wonderful atmosphere and okay food. I had my picture taken next to a huge horse wearing blue jeans a belt buckle and cowboy hat. They have live music every night as do most places Downtown.

Then we called for the hotel shuttle to come get us. We were pooped out.

Now, we are heading for the hot tub to warm up and then to bed.

Tomorrow we are meeting with Tom Repas' Dad and Mom for sightseeing and lunch!

And in the words of Tennesse Ernie Ford, "Bless Your Little Pea-Pickin Hearts."