Monday, June 29, 2009

Back a week

We've been home a week now and things are starting to get normal again. Work has been busy as I would expect, but not too bad. Russell has been really taking the load and I appreciate it. My MS was pretty good all-in-all over the Disney trip but I don't think there was a moment (other than the beach) where I was not using my walking stick. It was a requirement for such an undertaking. I've noticed that without it my leg has been much more fatigued, even in the short time I've been home and with the less strenuous exertion that brings. I'm looking forward to my upcoming appointments and MRIs to see what has changed.

Thursday at the Cape, etc.

We spent Wednesday at Epcot too, touring the countries and such. We had lunch in Italy and the food was remarkable. Much better than stuff we call Italian around here. We got to see street shows that were very entertaining and had pastries in France.

On Thursday we went to Cape Canaveral (not the Kennedy Space Center though, we have family who lives there). We spent the day in the ocean Boogie-Boarding (is that how you spell that?) and getting sunburned. We were trying to be good by putting on SPF 70 sunscreen often but did not realize until it was too late that the salt water just takes it off. Julie's legs were burned badly along with my back and stomach. We spent the rest of the trip trying to feel better (and are just now getting back to normal after the peeling and such).

We spent Friday at Hollywood Studios and had a great time there. There were a couple of rides we did get to go on because the lines were too long and the FastPasses had been given out for the day. The boys really liked the Indiana Jones show and the Star Wars stuff (imagine that).

Saturday we went back to Magic Kingdom and finished up our rides there we had not yet gotten to ride. We went back to the room relatively early so we could start packign and let the kids swim once more in the pool.

Sunday was our long trip back, but this time without any flight messes. We got home about 4:00 if I remember right. It was really good to be home.

Tuesday, June 16, 2009

Tuesday at Epcot

It was a lot of fun. We sent on Soarin' which is a truly fantastic ride but you have to do it FastPass, don't wait in line. Too long of a wait and you'll be disappointed. That could be said of many rides but they are certainly worth the 20-30 minutes you find most often. When we left Soarin' the line was 130 minutes long. That is just a disaster for expectations.

We had some really good ice cream bars today (yes shaped like mickeys ears). The ice cream was real ice cream (not the cheap stuff you can get). The chocolate coating was real nestle and was more like dark chocolate than milk. Very good. We have had really good food here. I was expecting it to be a bit or cafeteria quality and even though the service resembles McDonalds, the food is very good (I am very surprised).

We walked all over the 'near' side of Epcot today, saving the countries (far side) for tomorrow. All of the rides were fun and educational like I was expecting. Even thought I've taken my Bs today I am very very tired. My feet hurt and it was about all I could do to make it back to the hotel. I'm glad to be back and not have anywhere to go. On the bright side as I sit here typing I don't feel like I want to go to sleep right away. My body is tire but now that I've had shower I feel like having a quiet evening of TV, even though my leg is irritated at me :)

Monday, June 15, 2009

Monday at Disneyworld

Well, here is the rundown so far. We flew to Key west Friday. That was an adventure! First our flight form Tulsa was delayed nearly three hours. That of course made us miss our connecting flight. We then got on a standby list for another flight. Not too big of a deal as we saw there were 8 open seats on the plane but there was a 'weight and balance' issue so they did not want to let all of us on there. Luckily the captain let us on and we landed in Key West about 9pm. It was raining there so we could not get our bags until the weather cleared. We finally got our bags about 10:30 Friday night.

We went fishing the next morning about 7 and it was a hoot! I've never been fishing in the ocean, so catching gray snapper and shark was neat. I didn't catch anything big like that, but what I caught was fun and we got to see lots of neat fish (like barracudas) and a couple of shipwrecks.

We drove to Orlando yesterday and it took about 8 hours with stops and such. When we got checked in, we went to Magic kingdom for the fireworks show and some late night rides.

Today we went in the morning and stayed until about 2:30. We came back and swam until 6 and then cleaned up for dinner and back to Magic Kingdom for more evening stuff and fireworks, etc. The fireworks show was fantastic. Actually it was better than that. The best show I've ever seen. We were in a different part of the park and it was literally over our heads. The show was different from the night before and a whole lot better. Finally home at 10:30 or so. Very tired feet. It was all I could to do walk that much. My stick was acting more like a cane at the end of the day.

The security guard the second trip in gave me all kinds of grief about my stick. He said he had to make sure it wasn't a sword...A SWORD! He was trying to unscrew this n that and I took it from him before he broke the thing (since it collapses). So I fully collapsed it and asked "Do they make swords this short?!" Anyway he was all in my face for trying to defend myself. I got very frustrated. He actually asked me if I needed it to walk. Are you kidding me? Would I carry around a stick for my health? Oh well, enough of that. Lots of Bs in me, lots of water, lots of walking. Hope I survive. :)

Thursday, June 11, 2009

Late Nights

The last two nights have had me working to 10:30 and 11:30 to get projects wrapped up before vacation. I'm so glad the B's are working. They let me function like I need to.

Not much to say other than Julie is packing like crazy and we are both making lists of stuff to remember everything. I got a bunch of DVDs converted to the IPhone format so we can watch movies on the plane without getting out the laptop (joy!).

Really looking forward to this trip.

Oh, and Sky, thank you for your comments. It is nice to know you care enough to read this even though we haven't had a chance to chat in ages. I hope you are doing well also.

Tuesday, June 9, 2009

Countdown to Vacation

Well the countdown has begun. Only a few more days to our Florida trip. Julie started making the packing lists so we do not forget anything. The kids are getting excited as well, which is fun to see.

Work has been moving toward getting things in a good state before I go. The two networks we wanted to have in place, are pretty close to meeting that goal. We got our hardware in a day early and that really helped.

I have continued taking my mB12 (3-4 mg daily across 3-4 doses spaced 4 hours or so apart) and my energy levels are great (as measured by my ability to wake up in the morning). This morning was no different form others in that the alarm goes off, I snooze, but do not go back to sleep; I just think about my day.

I went to see Dr. M to get by blood work results. Great News! My total blood iron is down to 98! (from 179 in January and 207 last July) Woohoo! That is fantastic since high iron is so bad for your muscles (read=hard on your heart). My other blood stuff seems to be good also now so that has me happy.

I am looking into LDN (low dose Naltrexone) as a therapy I am interested in. It almost sounds too good to be true when you look at what it has done for others. I am trying to maintian a descent balance of optimism/skepticism so I am not disappointed if it does not work for me. Dr. M told me to look in to it and boy am I impressed. I may have to wait until I switch neurologists to get a prescription... but I looked online and it looks affordable. We'll see.

Tuesday, June 2, 2009


I wish I had more time to post. I fell guilty not posting more often. My energy has been coming back more and more. I'm starting to feel like myself again. I was telling someone just the other day that I feel more like I did a few years ago, in that my leg was an issue but the fatigue isn't there beating on me every day.

I installed a new garbage disposal (our old one was leaking) and 2nd sink plumbing over the weekend. It was nice to have the energy to do it. My morning awake'ness has been consistent but for the last two nights. Have been up late so I have an explanation outside of a b12 thing. I've been taking them still about 3-4mg/day spread throughout and I just cannot get over how much better I feel.

I had my blood drawn last Thursday (I think) and will meet with Dr. M this week to go over the results. I need to schedule my MRIs this summer to see if there has been any visible progression. I'm trying to get into a new neuro also for a combo 2nd opinion (just good practice I think) and bedside manner check :)

Work is ramping up as we bring on new clients and trying to get stuff done before vacation. It will be nice to get away with the family. I can hardly wait.

Chandler's 8th birthday is tomorrow. It is amazing to see the kids grow up. It happens so fast (I didn't really understand it until I had my own). They are both a joy to be around, and it seems to get better as they age.