Testing update

I figured I better take a minute to give you an update on my testing.  The particular one was the special lab I had sent to Missouri.  There is a specialist there that runs a clinic doing research.  There is a relatively new test called the NT5C1A test.  I don't really understand what it is but they are using it to determine if a patient has IBM - Inclusional Body Myositis.  Unfortunately, my results came in positive.

Inclusional Body Myositis is the type I believe I've mentioned before that is a icky as you can get in the Myositis world.  They refer to it as a "Slow progressing Muscular Dystrophy".  Most people are in a Jazzy within 10 years of diagnosis.  Typically there is no treatment and certainly no cure.  When I go to the conferences, you can usually tell the IBM people first of all because of their scooter but also because their arms and legs have completely wasted away.  There are no muscles left which causes their joints to look enlarged.

I don't know what to think of this new discovery.  On one side, it explains a lot why I am not like my friends with Polymyositis.  I don't have flares and periods of recovery.  I always feel the Myositis.  It would also explain why I don't seem able to make much progress in getting better or stronger.  On the other side, after my stint of going off medication in January, it is clear my body does better with Methotrexate.  I'm also clearly not wasting away.....yet.  And I can make some progress exercising at the gym.  So I don't know what is going on.

While the news is pretty depressing, I figure I have it regardless if I know or not.  It is an important thing to know what you have so you can fight.  As they learn and discover new things about Myositis, it might be helpful to know I am positive for this marker.  I probably should make plans to move forward with housing that has no steps.  And I can give myself permission to take it easy on  my body and cut back travel as I need. 

I am anxious to see the doctor at Johns Hopkins to see what she thinks about this new discovery.  It hard to believe that visit is in 12 short days. But overall, I plan to keep going as I am going and doing as I am doing.  This new information is really just another piece of the puzzle we know so little about.  I've always said if I am going down, I will be kicking and screaming the entire way! 

Moab 2015...and again and again

We spent our Memorial weekend with my friends down in Moab again.  This  year, I took over the group reservation process.  It was much easier than I thought it would be and it seems to have worked out well for everyone which is fantastic.  We had about 40 people there....plus.   Philip and I headed down Friday morning.  We were so impressed how easy it was to pack and load the car.  We meandered down to Moab and got unpacked and settled in by 4:00.  Whoosh! 

Coming into Moab.  I love the red rocks!

By 5:00, I realized we were missing our suitcase.  Unfortunately, we forgot to get it in the car.  No wonder we were impressed with the space.  I could work around the clothes and go get new clothes but my medication was in there and no way to get that and I couldn't go without it all weekend.   It is one of those moments where you have to evaluate the options.  We could either load up the car and head back home and skip the weekend (while still paying for the cabin because there are no refunds on a holiday weekend) or someone needs to get the suitcase.  I checked around and it appeared everyone was either there or well on their way.  So I made the decision to get back in the car and drive back to get the suitcase.  I left Philip in Moab (he couldn't face that drive again so soon).  I talked to my friends and asked them to look out for Philip.  My friend's Kimberlee and Aki agreed to take Philip to dinner with them.  The great news is I was going against the holiday traffic and was amazed to get home in 3.5 hours.  I grabbed the suitcase, some caffeine soda, and a protein drink and turned right around and headed back down.  I left the house about 8:45 pm.  Because it was so late, the roads to Moab were much more clear than earlier.  I decided to be safe, I should follow other cars as much as possible down the dark and empty roads.

Make this drive 3 times on Friday.  Whoosh!

I was laying down some miles and making good time.  I had my tunes cranked up and sang until I was sure I was going to lose my voice.  I followed a truck for over 100 miles.  In Helper, he slowed way down.  A SUV went past us so I decided to pass the truck.  As I was accelerating to pass, suddenly a police car jumped out.  I got back behind the truck as the police car pulled over the SUV and then stopped me and the truck in the middle of the road.  They let the truck through but made me pull over.  I knew I was in trouble.  Much to my surprise, he says he clocked me at 90 mph.  Now I don't drive 90....but I do know I had just accelerated to pass and that probably impacted the clocking device.  So I explained what had happened and that I was very sorry but was simply focused on getting back to Moab. He didn't care.  I got the ticket and a very animated and angry lecture about deaths on the highway, deer, flat tires, and crowded streets.  All true.  I know. I took the ticket and continued on my way.  The good news is I made it back to Moab by 12:30 am and was safe and sound.  Philip was such a sweetheart and waited up for me.  Needless to say, we slept in the next morning.

I decided to focus on the positive things and let go of the shitty Friday driving.  So Saturday, we got up and made some waffles and visited with people.  Then we got ready with plans to head into Arches.  Unfortunately, there was a long line to get into Arches.  It stretched down the highway and wasn't moving.  After waiting a bit, we decided it would probably be an hour or more just to get in and the park would be packed and frustrating.  So we jumped out of line and decided to head to Dead Horse Point instead.  We hadn't been there together before so it sounded like a great plan.  Once we got there, it was raining cats and dogs so we decided to enjoy our picnic lunch in the car and then we went to the visitor's center because they had a covered viewing deck.  But once we got to the viewing deck, it stopped raining and I felt like I wanted to walk out to the view point.  I was so happy I could navigate the path.  I certainly appreciated Philip's help up and down the path and across the slick rocks.  It was really pretty.

Waffles at our cabin

Wild flowers

So pretty!

Saturday night, it was my team's turn to make dinner.  We stay in an RV park that is similar to a KOA.  So there is electricity and running water.  We all bring crock pots and such to help with meals.  We made BBQ chicken sandwiches, baked beans, coleslaw, watermelon, chips, and strawberry shortcake.  Everyone seemed to enjoy it.  I decided to "tie one on" that night and brought a bottle of Petron Tequila.  Oh it was soo good and I really enjoyed it but as the non-drinker I am, it didn't take long for me to decide I should make it back to our cabin before I couldn't walk.  Philip and I played on the internet and listened to music while we giggled and sang.  Truly silly but I loved it.

The Saturday Dinner ladies - Me, Kimberlee, Stacy, and Kim
(missing is Allyson)

A view from the large pavilion we eat under

A collage of dinner Stacy put together.

Luckily I wasn't too hung over on Sunday.  We had massages in town at noon.  Then we went to lunch at Pasta Jays.  It is one of our favorite places to eat down there.  We headed back to the cabin and took a good much needed nap.  In the afternoon, the picnic table in front of our cabin was nice and shady so I got out my adult coloring books and started coloring and listening to music.  It wasn't long before the table was full of other people coloring with me.  It was great fun.  Before we knew it, it was time for dinner.  That group made Kahlua pork, rice, salad, watermelon, and macaroni salad.  It was delicious and the pork recipe was a diet recipe which is great! 

 

 

Speaking of diet, I won't even pretend I stayed in my calorie count.  I did eat a little pasta.  I had some rice.  I ate one cookie.  But no bread.  So hopefully I didn't do too much damage because I am only a few weeks out for my follow up at Johns  Hopkins.  I'm so close to my personal weight loss goal for that visit.

Saturday night, I laid off the alcohol and was a good girl and did my injection.  But we still had fun.  I brought some fake mustaches to play with, some Bean Boozles, and glow sticks.  Most people left after dinner but several of us stayed in and played.  Bean Boozles are Jelly Bellies that there is one good jelly bean and one icky one that look the same.  There are probably 10 different colors.  So you might get watermelon or get vomit.  Or tutti fruity or booger.  Or Licorice or Skunk Spray.  One was chocolate and the match was dog food.  Well you put them in a bowl and pass around.  You take one and eat it and then say what it is.  The faces were priceless.  It seemed people got more bad then good.  Pretty soon, us around the table refused to take anymore so the kids started offering them to unsuspecting people.  They would take a big handful and pop them in their mouth and then start spitting them out.  Before I knew it, the bowl had taken a journey never to be seen again which is good for me.  I still laugh if anyone was watching because people were spitting out the icky ones pretty fast.  I'm bad.  I know.  But I laughed so hard my stomach hurt today.

You want what?

Philip called this the pedophile 'stache.

Today we got up and got the car packed to head back home.  Philip was a sweetheart and unpacked the car when we got home before headed to his Dad's house.  I'm resting up before I jump into the big clean up task.  We had so much fun and I feel so lucky to have such great friends that include us in this trip.  It really is fun.  In fact, Philip said he had so much fun, he will come home from college next year to go with me again.  That is saying something!

Again and again is right!  It is too fun to not do every year!

Redmond's on the road.

I hope everyone had a great weekend.  I know Memorial Weekend isn't about vacations and camping.  I do have that awareness and thank those who fight to keep our country free.  Many have paid a dear price for our freedom.  Thank you.

The Utah/Idaho border adventure

Let's see.  As you know, I've diddled in internet dating lately.  I've had very mixed results but I did meet an interesting man.  The only problem is he lives in Idaho.  We've been chatting for a bit getting to know each other a little.  We find we have lots in common.  So last night, I found myself driving to the border of Utah and Idaho.  We met 1/2 way in Snowville.

I realized I've never drove that direction before.  I've never been in Highway 84 that I can ever remember.  Although it was raining ALL DAY, it was so pretty with the rolling hills and all the farms.

Snowville is this funny little town/truck stop with about 150 residents.  It has 2 places to eat so we picked one and had an early dinner.  It was nice and friendly and this guy is a very nice guy.  So we will keep getting to know each other and see if we continue to enjoy each other's company.  It's kind of fun.

Yes that is a post to tie off your horse!  Haha.

And that is all I am going to say about that!

Mother's Day 2015

For Mother's Day, Philip and I headed south to see Grandma and Mom.  As we typically do, we left very early Saturday morning.  We got to Grandma's by about 11.  We decided to take Grandma out to lunch for a treat.  She was so excited.  She loves Applebee's so that is what we did.  Chuck joined us too which was great.

Grandma doesn't talk  much anymore and she hasn't been eating much.  That is okay for a 98 year old.  But when she saw Philip, she wanted to make sure we knew she graduated from East High school.  That was so cute that she wanted to share and that she was thinking about Philip's graduation coming up soon.  She ordered a chicken breast and she really enjoyed that which was nice to see her eat so well and enjoy herself.

After lunch, we took her back to her room and opened gifts and visited.   Grandma loves gifts!!  We also took photos.  Our last selfie worked out so well we did it again.  This time Grandma was all over it and understood what we were doing.  She is so dang cute!

We thought Grandma would take a nap but I think we was having too much fun so she read for a bit before her nap.  While she was reading and resting, we played a round of "Hand and Foot".  It was almost as good as playing on our cruises.

For the evening, we met Mom and Chuck's friends, Dorothy and Ken.  We went to the Cliff Inn Restaurant.  This was the old hotel by the old airport.  It has been completely remodeled and revamped.  It was very nice and certainly a huge upgrade.  It has a commanding view of St. George and the best food I think I've found in St. George!  I was completely wrapped up by the deliciousness.  And we had great conversation.  While we were there, it rained like no tomorrow.  But soon the sunshine came out and we even enjoyed a beautiful rainbow over the city (not captured with a photo).

View from our table.

On Sunday, we met Mom and Chuck at Oscars by Zions.  I thought I was introducing Philip to Oscars but he realized he had already been once we got there.  We had a great breakfast sitting on the patio.  We joked that brunch at Oscars was our religious practice but I'm not kidding.  The food it yummy and you just....can't....get....over....the beauty.

 

Philip has  a new trick that makes  me laugh so hard.  Because I am a proud Mom, I asked him to do it for me so I could take a photo.  Like most kids, he wouldn't.....unless I paid him.  So for $2, I got these little gems below.  By far the very best thing I've ever got for $2 and it topped off my Mother's Day just right.

The angry version

After breakfast, we headed back home.  We had a great time and really enjoyed visiting with the fabulous women in our lives.  It's things like this that fill my soul to the brim! 

 

Happy Mother's Day!





Tests....tests...tests

Lots of testing going on here for your update today....

I finally made it to the hospital early in the morning, early in the week for my special blood work to test for IBM.  This is the test I had  to have drawn here (at a hospital that was willing to mail it overnight) and sent to the specialty lab in Missouri.  I spent almost 2 weeks calling around to see how it can be done and if they will even do it.  Some labs weren't set up to do it but my favorite Murray hospital could.  So I took care of that last Tuesday.  It will be 2-3 weeks before I hear any more. And I have no idea who or how I will hear about it since the lab is out of town.

I also got my CK pulled yesterday at my regular lab.  CK is still coming down which is thrilling.  We are down to 126 which is fantastic.  Especially considering I am back in the gym and pounding my muscles (injury in theory) on a regular basis.  So that is a good sign and I am so  happy I could take the time to get my CK down without Prednisone!

I had my Mammogram a few weeks ago.  Take care of your boobs people.  Mine was fine.  Good for another year.

I'm going to count the gym as a test too.  Because it is for me.  I've been going steady for 2 weeks now.  I am mainly focused on cardio because that is the biggest issue for me right now.  I need to be a more stable walker.  So I am doing the bike every time.  Because I was feeling pretty good with that, I decided to add a little more.  Arms one day....hip flexors another.  Yesterday, I finally had the nerve to get in the "dipper".  It is triceps machine.  Basically you sit on a seat and there are handles sort of by your arm pits.  You push them down with the appropriate weight.  I started with the lightest weight....10 lbs.  It was embarrassingly easy.  So I ramped up to 25....then 35.  Easy right?  Well today, my arms aren't doing shit.  They are very tired.  I guess I won't be picking anything up today.  Haha.  The real interesting thing about this muscle disease is I can do lots.  The gym feels good while I am doing it.  I feel accomplished.  I can push myself to do so much more.  But the truth is how I feel in the morning and the next day.  That is when I can tell if I did too much.  So I keep trying little adjustments to push myself but not too far.  I have given myself permission to even go for 20 minutes to just do the bike.  Anything else is bonus.

Philip is testing too.  He is doing AP tests.  He had his Environmental Science test this past Monday.  He said it was a piece of cake.  Yesterday he had Physics.  It took almost 5 hours for him to take it because they were so slow administering it.  And it was almost disqualified because someone's phone rang during the test.  When that happens, the test is closed and can't be retaken by any students sitting for the test!  He didn't feel as good about that test.  The teacher was not a great teacher and there were many things on the test Philip said they never learned.  That is a huge disappointment.  Next Monday is his final AP test for Stats.  He thinks that one will be easy too.

So lots going on here.  But all is good.  Hope you are doing well too!