Clapping On The Down Beat

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Judgemental June 5, 2016

Filed under: Multiple Sclerosis — clappingonthedownbeat @ 9:19 PM

This is a tough post to write.

Have you ever parked in a parking lot a noticed a car park in a handicapped spot and then saw someone who didn’t appear handicapped get out?  Did you ever wonder why they had a tag?

I guess I had a stereotype of the typical person who needed a handicapped spot.

And so having a conversation with my neurologist, I was given forms for a handicapped tag.

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Yup.  So now I will be “that person” that I always wondered in the back of my head- “why are they parking there?  Isn’t that for someone who needs it?”

Summers in Texas can get really hot.  My car can heat up and get really hot.  When I get overheated, then I start to feel tingling and numbness in the areas that have nerve damage.

I don’t use it everyday.  I just have it for times when it gets really hot, when I would otherwise have to park a ways away and walk or carry heavy loads far (like for catering jobs, carrying food and equipment…..ect.)

I laugh at myself.  The one who used to have those judemental thoughts, became the subject.

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In Action February 24, 2016

Filed under: Multiple Sclerosis,Parenthood,Sharing and Caring — clappingonthedownbeat @ 9:37 PM

The girl moves fast.                DSC_0348

As I watched the fast paced championship game, all I could think about was how fast life moves.  The game was such a metaphor.  Sometimes we get knocked down, hurt, pushed around.  Sometimes we aim for the goal and find success, sometimes not, but we rebound and try again.  Sometimes we get a fast break away or a great pass or assist.  Sometimes we lose, sometimes we win.  And it moves fast.

I also started brain training with a focus group from UT Austin school of nursing this week.  It was a stark contrast.  This is a MS study.  I was one of the youngest in the group and have been diagnosed the shortest amount of time.  It is the first time I have been in a group with others with MS.  Its a bit of a breath of fresh air to speak with someone who knows, who gets it, who has or is going through the same things.  Because no one understands.  No one knows- unless they have been there.  Right away when you mention the day you were diagnosed- they all know.  They had the same thoughts, the same tears, the fear, the same Dr. apts, the same tests, taking the same drugs.  Actually, when some of them were diagnosed there weren’t any drugs.

There are a few life changing events that have reshaped me and my view.  I move slower.  Because life is a marathon and not a sprint.  When there is a health scare or crisis, you change your view on what’s really important short term and long term.  My faith has put it all in perspective.  Yoga has taught me to be purposeful and intentional.  Learning about MS and then brain, I try to focus on one thing at a time and not multitask.  I listen to my body more.

I admitted to the group that I am in a bit of denial.  I don’t talk about the MS because I don’t define myself by it.  But I know it’s there.  I have 3x a week reminders (shots), bi-annual MRIs and nerve damage.  There was another woman there who has had MS for 20 years and could relate to me.  She said she doesn’t talk about it either and maybe only 5 people know she has MS.  I think the focus group will be good- for all of us.

The bike MS 150 is coming up.  Would you consider sposoring a rider for a worthy cause in my name?  Here’s a link: http://main.nationalmssociety.org/site/TR/Bike/TXHBikeEvents?px=12671042&pg=personal&fr_id=27149

10 Facts about MS

Multiple sclerosis is a chronic, unpredictable disease of the central nervous system.
More than 2.3 million people are affected by MS worldwide.
Most people are diagnosed between the ages of 20 and 50.
Women are much more likely to develop MS than men.
There is no evidence MS is directly inherited.
It is challenging to diagnose MS.
No two people have exactly the same symptoms.
MS symptoms can be invisible.
The majority of people with MS do not become severely disabled.
MS has no cure.

 

The Day the Music Went Silent February 9, 2016

Filed under: Multiple Sclerosis,Sharing and Caring — clappingonthedownbeat @ 7:48 PM

I hope you never have a day where you feel like the world has stopped.  The reality you thought you were living spins upside down.  I did.

The good news is, I have learned a lot from it, and it changed me.  I don’t let it define me, but it did reframe how I look at everything.  This is how the blog started.

What Is MS?

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

MS symptoms are variable and unpredictable. No two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time. One person might experience only one or two of the possible symptoms while another person experiences many more.  More common are fatigue, weakness, numbness or tingling, walking difficulties, vision changes, and dizziness.

A friend is biking the MS150.  The money raised goes for research, programs and services.  Would you consider making a donation?

2016_BIKE_logo.png

http://main.nationalmssociety.org/site/TR/Bike/TXHBikeEvents?px=12671042&pg=personal&fr_id=27149

 

 

Funny What We Wish For January 8, 2015

Filed under: Interests,Multiple Sclerosis,Parenthood,Sharing and Caring — clappingonthedownbeat @ 1:40 PM

I meant to write yesterday, but the whole arm in a sling thing got in the way.    Here is keeping it real from after the surgery.

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I just got back from my post-op visit.  When I saw the Dr to review the MRI I was joking with him that I was hoping for bursitis.  http://www.mayoclinic.org/diseases-conditions/bursitis/multimedia/bursitis-of-the-shoulder/img-20006772  But when reviewing the MRI he told me in the serious voice, “no, it’s a rotator cuff tear”.  So I prepared for the worse and went into surgery.

The worst part really was the nerve block.  Notice was swollen/droopy eye?  I had paralysis and complete numbness from the neck down to the fingers.  That was supposed to be better and less irritating for MS- it would mean less anesthesia.  Actually when I woke up it was horrible.  My right arm just hung heavy.

Yesterday, it began to wear off and I could make a first and move my wrist.  Not only has it been hard to do things with my left hand, but just how many things are difficult with just one hand.  (Try taking the top off your medication bottle with one hand, HA!)

Today They removed the bandages and I got to look at the three little incisions they made in my shoulder.  I got to see pictures of the inside of my shoulder joint too.  When they went in, I had a bone spur that was causing the bursitis and a small “tear” on the inside of the rotator cuff that should heal on its own now that the bone spur is removed.  Recovery will be far less  time than originally thought.  And, I am even able to type today.

So, now thinking full circle, it’s funny that I wished for bursitis, because that’s what I got.  And I am thankful for that today.

 

Another year passes September 18, 2012

Filed under: Multiple Sclerosis,Parenthood — clappingonthedownbeat @ 2:16 PM

September marks many things for me.

Today is my oldest son’s birthday.

  

I really feel like it wasn’t that long ago that I quit my job teaching HS to stay home with him.

 

Last night I was really proud of him.  We have a schedule conflict between football practice (M, W, F night practice) and Awanas (M nights).  We asked him what he would like to do and he was very firm about going to Awanas even if it meant less time playing in the football games.  Every once in a while I really do feel like I have or am doing something right.

 

It also marks 2 years since I had my first attack.  I had a 7 month old, my oldest was starting Kindergarten and my left side went numb.

I met with the neurologist yesterday to review the latest MRI and I had a blood draw today to check all my enzyme functions.  I really like this neurologist.  I can’t begin to explain how important I feel the relationship, a good relationship, is between a patient and a doctor.  I don’t want to feel like a cow through a chute, or a chart number walking through the door.  I want to feel like they have time for me and to answer my questions.  I don’t want to feel rushed, and I want them to look in my eyes when they tell me something and even write it down or print it off so I can take it home to reread.

I probably feel this way, because the 5 of us have a lot of doctors.  Pediatrician, Pediatric Cardiologist, Dentist, Family Doctor, ENT, Neurologist, OBGYN, Oncologist, GI Doctor, Surgeon.  I think that’s the lot.

 

What the shot!? September 2, 2012

Filed under: Multiple Sclerosis,Sharing and Caring,Yoga — clappingonthedownbeat @ 9:50 PM

It’s been needle after needle this weekend!

Thursday night I took my 3rd Rebif shot.  I switched to a Sun/Tues/Thurs schedule that I like much better.  I feel like I actually get the weekend off now.

However, Friday night I had my semi-annual MRI scheduled.  I am what they call a “triple”.  Most people go into to have one maybe 2 MRI’s.  I have three times two.  I have brain, cervical and thoracic done with and without contrast.  It is about 2-2.5 hours lying on a flat board with loud thumping buzzing noises.  I like to go at night because then I don’t have to have an IV started, they just do the injection of contrast.  So there is the second needle of the weekend.

Then, while grocery shopping on Saturday, after yoga class.  Oh and by the way I got these SUPER COOL new pants that I wore because I am always talking anatomy to the class and now they can see it!

 

Ok, back to the grocery store (and yes, I wore those to the store, I did put a skirt over them though) on my way out I saw the nurse giving flu shots and I thought, “they I have no kids why not get my shot now?”  Well, since insurance covered the shot and she was also offering a pneumonia shot I figured lets get it all over with today.

 

The shots didn’t hurt, but I couldn’t move my arm saturday night or today.  I have been taking ibuprofen 2 at a time and keeping a heating pad on my arm.  I am pro vaccines, so in the long run I will suck it up.  The flu shot is inactive so it will last 6 months and the pneumonia shot is good for 5 years. My recommendation: don’t get them at the same time, or maybe get them in different arms!

AND it’s sunday, so I took another Rebif shot tonight!

UGH!  Needles.

 

Hotter than Hades August 1, 2012

Filed under: Meal Planning,Multiple Sclerosis — clappingonthedownbeat @ 6:29 PM

Texas summer has arrived.  The last few days have been in the 100’s.  Yesterday my daughter had her soccer evaluation (they do a few drills so the girls are evenly distributed on teams).  It was in the evening, but it was still 102.  We both came home feeling sick.  Usually when I get overheated I can feel the nerve damage down my arm and it goes a little tingly or numb, but last night I got stomach cramps and just laid on the couch all night (completely engrossed in the Olympics!)

With is being so hot all I can think about is salads.  Since there is an abundance of fresh produce, I am featuring salads this week.  If you have a great one, please share.  I also got caught up on my recorded cooking shows with the big kids in camp this week.  After watching a recipe for madelines, I called my neighbor to borrow her pans.  I think I am going to get a set for myself this weekend.

Arugula and Watermelon Salad

  • 2 (5 ounce) packages arugula
  • 1/2 large watermelon, seeded and cubed
  • 1 red onion, sliced
  • 1 cup crumbled feta cheese
  • 1 1/2 cups balsamic vinaigrette
  • Toss the arugula, watermelon, red onion, and feta cheese with the balsamic vinaigrette in a large bowl. Serve cold.

Broccoli Salad

  • 2 pounds bacon
  • 1 large head fresh broccoli, chopped
  • 3/4 cup chopped celery
  • 1/4 cup minced green onions
  • 1/4 cup diced red onion
  • 1 cup raisins
  • 3/4 cup blanched slivered almonds
  • 1/4 cup white sugar
  • 2 tablespoons distilled white vinegar
  • 1 cup mayonnaise
  1. Place bacon in a large skillet. Cook, turning frequently, over medium high heat until evenly browned. Cool, and then crumble.
  2. Preheat oven to 300 degrees F (150 degrees C). Spread slivered almonds on a cookie sheet. Bake for approximately 12 to 14 minutes or until lightly browned, turning once during toasting. Cool.
  3. In a small bowl, mix together mayonnaise, sugar, and vinegar. Set aside.
  4. In a large bowl, combine broccoli, crumbled bacon, celery, green onions, red onions, raisins, and toasted almonds. Toss with mayonnaise dressing. Chill for several hours in the refrigerator.

Tomato and Green Bean Salad

  • 12 cherry tomatoes
  • salt and black pepper to taste
  • 1/4 cup olive oil
  • 1 bay leaf, crumbled
  • 1/4 cup pine nuts
  • 2/3 pound thin green beans, trimmed
  • 1 (5 ounce) package arugula leaves
  • 6 fresh basil leaves, torn into pieces
  • 1 tablespoon red wine vinegar
  • 2 tablespoons whole-grain mustard
  • 2 cloves garlic, minced
  • 1/2 teaspoon honey
  • 1/4 cup olive oil
  • 6 ounces crumbled feta cheese
  1. Preheat an oven to 225 degrees F (110 degrees C).
  2. Slice the cherry tomatoes in half, and arrange them, cut sides up, on a baking sheet. Sprinkle them with salt, pepper, and the bay leaf; drizzle with 1/4 cup olive oil.
  3. Bake the tomatoes until they are shriveled and dry on the outside, but a little moist inside, about 2 hours.
  4. Toast the pine nuts in a small pan over medium-low heat, gently shaking the pan as they toast, until beginning brown and fragrant, 2 to 3 minutes; set aside.
  5. Bring a saucepan of water to a boil; cook the green beans in the boiling water until bright green but still crisp, about 3 minutes. Drain and rinse immediately with cold water.
  6. Combine the roasted tomatoes, toasted pine nuts, green beans, arugula, and basil in a salad bowl. Whisk together the red wine vinegar, mustard, garlic, honey, and 1/4 cup olive oil in a bowl, and pour the dressing over the salad. Stir in the crumbled feta cheese just before serving.

Chickpea Salad

  • 19 ounces garbanzo beans, drained
  • 2 tablespoons red onion, chopped
  • 2 cloves garlic, minced
  • 1 tomato, chopped
  • 1/2 cup chopped parsley
  • 3 tablespoons olive oil
  • 1 tablespoon lemon juice
  • salt and pepper to taste
  1. In a large bowl, combine the chickpeas, red onion, garlic, tomato, parsley, olive oil, lemon juice and salt and pepper to taste. Chill for 2 hours before serving. Taste and adjust seasoning. Serve.

Macaroni Salad

  • 2 (8 ounce) packages multicolored spiral pasta
  • 1 yellow bell pepper, chopped
  • 1 red bell pepper, chopped
  • 2 pickles, chopped
  • 1 (6 ounce) can sliced black olives
  • 1/2 cup cubed cooked ham
  • 1/4 cup red onion, chopped
  • 2 cups mayonnaise
  • 2 tablespoons poppy seeds
  • 1 tablespoon mustard seed
  • 1 pinch salt and ground black pepper to taste
  1. Bring a large pot of lightly salted water to a boil; cook spiral pasta at a boil until tender yet firm to the bite, about 8 minutes; drain and set aside.
  2. Mix yellow and red bell peppers, pickles, black olives, ham, and onion in a large salad bowl; stir in spiral pasta. Mix in the mayonnaise until thoroughly coated. Stir in poppy and mustard seeds; season with salt and black pepper. Refrigerate salad until chilled, 1 to 2 hours.

Warm Sweet Potato Salad

  • 6 large sweet potatoes, peeled and diced
  • 4 large baking potatoes, peeled and diced
  • 1/2 cup mayonnaise
  • 1/4 cup Dijon mustard
  • 1/3 cup balsamic vinegar
  • 1 teaspoon ground turmeric
  • 1 tablespoon chopped chives
  • salt and ground black pepper to taste
  • 2 slices crisply cooked bacon, crumbled
  • 2 green onions, finely chopped
  • 1 red onion, finely chopped
  1. Place the diced sweet potatoes and potatoes in a Dutch oven, cover with water, and bring to a boil. Boil until the potatoes are fork tender, but not mushy, about 20 minutes. Drain and cool the cooked potatoes slightly.
  2. Meanwhile, mix together the mayonnaise, mustard, balsamic vinegar, turmeric, chives, salt and pepper in a large bowl. Add the bacon, green onions, red onion and cooked potatoes and toss to coat. Serve garnished with extra chives or green onion.

Picnic Potato Salad (or with a grilled steak)

  • 2 pounds small new potatoes, quartered
  • 2 tablespoons balsamic vinegar
  • 1/4 cup extra-virgin olive oil
  • 1 tablespoon Dijon mustard
  • 2 tablespoons chopped fresh basil
  • 1/2 teaspoon salt
  • 1/4 teaspoon ground black pepper
  • 1/2 cup chopped onion
  • 3/4 cup crumbled blue cheese
  • 2 tablespoons chopped fresh chives
  1. Place potatoes into a large pot and cover with lightly salted water; bring to a boil. Reduce heat to medium-low and simmer until tender, 10 to 15 minutes; drain.
  2. Whisk vinegar, olive oil, mustard, basil, salt, and pepper together in a large bowl; add the potatoes and onion. Toss gently to coat. Let stand until cool, about 30 minutes.
  3. Fold blue cheese and chives into potato salad until blended.