Losing my Voice

I think most people know that for the last 11 years I have worn an adaptive device called a Palatal Lift which has held my palate in place for less hypernasal speech brought on by Myasthenia Gravis.  This little device has literally given me a voice.  Why the University of Iowa failed to get me one sooner is anybody's question.  This little device has a hefty price tag and I take very good care of it as insurance does not cover its cost!

I've had a few glitches and accidents with my palatal lift over the years. Actually this little pink guy is my second device and in another 3-5 years I'll need another one. Chalk that up to about $3,000.  Usually at home I don't wear it because I am by myself.  I took it out Wednesday night, slept a good nights sleep and got up Thursday ready for the day.  When I popped it in my mouth to start making calls Thursday morning I realized it wasn't going in.  Baffled I first thought maybe food was caught it in so checked it out, nothing.  Please realize that I have two clips that have been sodered onto my teeth which hold this puppy in place.  I tried a second time and nothing, it wouldn't stay in. So I got up and brushed my teeth again thinking that food was stuck on the clip. It was after I put my finger in my mouth I realized the clip on the right side of my mouth was gone. Yes, gone. Like no longer on my tooth.  It appears that during the night I must have swallowed the clip? Who knew. The clips are 11 years old and the doctor said they could wear over time and that could happen.

When I realized there was no way to wear my lift, I texted my mom a HELP message.  Luckily, she was able to quickly call and get me an emergency appointment at the Prothodonist where a clip was re-sodered onto my tooth this morning.  Talk about a gagging, teary eyed appointment. Think disgusting taste in your mouth and yucky sounds to get a clip remade.  We are back in business though and with a voice.

This little incident however is a great reminder of how much we take for granted.  Losing my voice for just a mere couple of hours without my device was so debilitating. Work calls stalled, work meetings cancelled, everything on hold. Think about those who can't hear or can't see.  Imagine what they feel.  I can't help but think this happened for a reason to bring me back to reality of what I really have in life. I have no idea of hte cost of having my clip remade. But I know that having a voice is priceless.

3 Cheers for Aruba!

Aruba was fantastic! I think I forgot I had a job and things to come home too. So very relaxing! I'm working on another post to come of all our adventures and great times but am trying to get things back in shape to return to work. There are too many pictures to post so hopefully you saw them on facebook! Cheers!

Pre Aruba Cheers

Cheers to Aruba! Cheers to a great superbowl party, great food, great company, great drinks and a great game! Oh yah, what game?! Thanks Susan and Will!

Making Muffins

I have never attempted to make muffins outside of being in a box or package straight from the store. When I came across this recipe in Penzey's magazine I decided to give it a whirl.  I'm in love with Penzey's Spices and the fact that they have a cute little store in my neighborhood downtown makes it extra convinent! Sign up for their catalog and you get a coupon for a free spice nearly every other month!

Cherry Almond Muffins

1 bag of frozen cherries
2 3/4 cups flour
4 eggs
1 tsp baking soda
1/2- 1 tsp Almond Extract
1/2 tsp pure vanilla
1/2 tsp salt
1 1/2 cups sugar
1 1/2 cups sour cream
8 TB/1 stick butter- room temperature

Preheat oven to 400°. Grease and flour muffin tin cups or line with paper muffin cups. Combine flour, soda and salt in a bowl and mix well. In a separate mixing bowl, cream together the butter and sugar until fluffy. Beat in the eggs, ALMOND and VANILLA EXTRACTS, sour cream and dry ingredients. Mix until just moistened (overmixing will make the muffins tough). Fold in the cherries. Fill the muffin cups about 2/3 full with batter. Bake at 400° for 20-25 minutes or until a toothpick comes out clean and the tops are lightly browned.

Note: Sour cherries can usually be found frozen, canned or dried. If frozen or canned, drain off any juice before using. If dried, chop into smaller pieces and they taste great as well!
I think that 25 minutes is almost too long to cook them- or in my oven it was. Let's hope they taste as good as they smell!

2nd Annual Greater Kansas City Myasthenia Gravis Walk, Run and Roll Update

As we inch closer to April 21st, I am excited that we are ahead of where we were last year at this time. As of today there are 22 registered runners, walkers and rollers for the upcoming 2nd Annual Greater Kansas City Myasthenia Gravis Walk, Run and Roll. And we have over $4350 in sponsorships! Thanks to our newest sponsors Jeff and Pat Swartzendruber and Sally Denney!  We are so excited for the event and I am so grateful for the committee making this dream come true! Hope to see you there!

Some important links I wanted to share:

Registration for the Run

Facebook page

Online donations

Hilton Garden Inn Overland Park- rates are $85/$95 if you reserve by 3/21/12- they have a block of 12 rooms so I suggest making your reservations now! It's also a Nascar weekend in KC which means hotel rooms will be a challenge.  Info is as follows:

Greater KC Myasthenia Gravis Rock, Roll & Run

Guestroom Block

 

Dates:  4/ 20 & 21/2012

Note: Requests made before or after these dates must be made by calling the hotel directly.

 

Call: 1-877-STAY HGI or 913-345-2661

Request the Group Rate by giving the Group Code ( KCM   )

 

Book On-Line:  www.overlandpark.hgi.com

                   Check Availability, Insert Dates, Go

                   Special Accounts: Group/Convention Code (Type in ( KCM   )

                   Proceed

         

Rates:

 $85 .00  king w/ sofabed

 $95.00 Jr. Suite =  king w/ sofabed and living room area w/ 2 tv’s

 

Rates include breakfast buffet coupons for each guest, each morning of their stay. ($9.95 value). 

 

Cut-Off Date:  3/21/2012

Reservations made after this date will be accepted only on basis of availability.

 

Cancellation Policy: Before 6 p.m. the day of arrival; if the reservation is not canceled and the guest does not arrive; room and tax for the first night will be charged to the credit card on file in the reservation.

Nose in the books

After the new year, I started making a pile of the books on my very dusty bookshelf that I might like to read on the beach.

Here again, I am the blacksheep of my family as in I don't read as much as they all do. I like to read but at night I am too tired to read and on the weekends or after work I don't like to sit still, my hands have to be busy therefore reading doesn't fall there either.  And over the years as my Myasthenia Gravis has progressed, it's not as easy to lay and hold a book up. It hurts my arms and makes it hard to turn the pages. I know this sounds funny but just a few weeks ago was talking to one of the sponsors of the MGA Run, who also has MG who asked me if I had trouble holding a book for a long amount of time because that really frustrated him.  That being said, my books get dusty very fast. 

However, I think curiousity got the best of me when I was picking out books for my trip and believe it or not I already read 4 of them that I planned to take with me! Luckily, there are still about 40 books on my shelf waiting to be read so I just made a new pile! May I reccomend to all, The Happiness Project by Gretchin Rubin. Great read especially for the start of the new year!

Cheers to happy reading next week on the beach!

Friday Food for Thought

Where God takes you is where you are supposed to be. 

I must admit, I'm not really into all the award shows, Academy Awards, the Golden Globes, the Emmy Awards. Blah.

This question was proposed earlier this week, if Newt Gingrich was to become president would Callista be the "Third wife" instead of the "First Wife?"  Good question and as one suggested by the time of the election there could even be a "Fourth wife!" Deep thoughts....

I LOVE the Mayo Clinic- a true testament of the place. I got a personal letter from Dr. Engel this week following up on a potential treatment recommendation with an article he thought may interest me.  Talk about being a name and not a number. LOVE LOVE LOVE the kind of care they provide there.  I wouldn't wish it upon anybody to be sick but if you are, don't waste your time, just go to Mayo!

Whenever the Bachelor is on, I miss my friend Kara. I can just hear her saying, "sissy what are you wearing," or "look at that b*tch!" Kara, I miss you! Time to plan a trip to DSM! :)

Trust takes years to build and a moment to destroy.

This week I learned that the spring Nascar race is the weekend of the 2nd Annual Greater Kansas City Myasthenia Gravis Walk, Run and Roll. Who knew we'd have competition with jean shorts, mullets and chewing tobacco for hotel rooms?  Not to fret, Hilton Garden Inn has a great deal for us! If you need the codes email me and let me know!

I have a big dilemma keep the auto correct on on the iPhone and it corrects stuff you really mean to type, take it off and it's an even bigger disaster!

Grilling out with the windows open on January 31. Yes, please.

I realize it's been really warm this winter but the Ice Cream Truck is back making the rounds through the neighborhood and I think that is just weird.

To the 23 year old chick on the Bachelor who told Ben she had accomplished everything she wanted to accomplish. Wow, what an over-achiever! Seriously now, get your head out your a**. 

Last night I tried the Blvd Chocolate Ale, most know I am NOT a beer drinker. But I actually LOVED it. Chocolate Beer, who knew?!

6 days later, you better believe I am still smiling about that Iowa State victory!