Counting Down

25 03 2014

The days are slipping past faster and faster. So much to do and my brain feels a little muddled with trying to keep it all straight! Right now it seems that if it doesn’t have something to do with school or wedding then it just doesn’t happen. And blogging has been one of those things that just hasn’t happened.

I received feedback via email after my last blog post and I was touched with the way you opened your hearts. This seems to be a struggle so many of us face and I was encouraged to hear your thoughts and how God is working in your lives. Thank you for blessing me!

Health wise things have been rather up and down. I got a cold a while back and it took awhile for things to level out again. I was doing fairly well for a bit and then for some reason I began feeling sick and triggering randomly again. This past week has been a lot better! PTL! We took our engagement photos yesterday in some gorgeous peach orchards and everything went fine and NORMAL! =) We did have to adjust the time because of the low temperatures in the morning, but God blessed us with comfortable, non-triggering weather and a very accommodating photographer. And I can’t wait to see the photos!

There has been lots of activity my corner of the world!

Planning a wedding that allows for health needs is interesting. There are many different things to consider and everyone has an idea of what could make things easier. I’m very thankful for my mom’s calm logic and for the way my family doesn’t pressure me into feeling I need to have as “normal” a wedding as possible. We’re just going to try to be realistic, have a plan B and take things as they come.

We emailed our save the dates a few weeks ago. There have been so many people who have touched our lives whom we’d love to invite but we’d like to keep the wedding as small as possible. However, so many of you blog followers have rejoiced with us and we’d like to share our wedding website with you. Click here or enter www.weddingwire.com/andreaNjoe to view it. The password is: june.

Two weeks ago my sisters and mom hosted a bridal shower for me. They did an amazing job with an around the clock theme. Each guest was given a time of day and their gift was to reflect whatever they thought I would be doing at that time. People were very generous & creative and I received so many practical gifts!

I was so honored by the presence of everyone who came and it was hard to know who to talk with next! Most of my students, past & present, of the female gender were present and sang a song. It was very special to have them there. Unfortunately the photos were disturbed while in the card reader and now refuse to be seen. I’m hoping to be able to recover them and if so, I will add them to this post at that time. So check back later!

My friend Kristen Hooks came for the shower and for part of the following day. She helped me to organized the huge pile of shower gifts and we brainstormed on ways to fix up the trailer Joe & I bought and put on a piece of land a few minutes from my parents.

Last week, four of Joe’s friends, along with my Uncle Phil & family came from NC for the weekend to give us some help with the trailer. A few of the guys were there to work on Friday, but Saturday was the main day. My family and a few other others from around here were there to lend a hand.

Here is what the trailer looked like on the lot when we bought it. Charmingly ugly with lots of potential.

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Soon after it was placed on our lot, my family went over to see it. There were no steps and so dad stacked some cement blocks for us to use as stairs. Later as we drove out the lane, Alex’s little voice called out comfortingly, “Don’t worry Andrea! We will build some steps for you!”

The floors all need to be redone, the walls are yellow & ceilings brown from their former owners smoking habits and the cabinets need to be replaced. So a whole lot of energy went into sprucing up the outside and tearing out the inside! Joe and I were amazed at how much was accomplished!!

They put the skirting on, painted the ugly red to match it and sealed the roof. We’re very pleased with how it turned out and several neighbors even stopped by to give their approval. It’s amazing what a little paint and elbow grease can do for a place! I’m thinking a blue front door would be a nice touch but we’ll see. =) They also ripped out all the flooring, cabinetry and trim. They even scraped the ceilings of their browned popcorn.

Now we’re ready for the fun stuff like painting and new flooring ect. We owe a lot to these folks and are so grateful for the boost they gave us!

Now look at the difference 15 pairs of helping hands can make!

Saturday morning before they started.

Saturday morning before they started.

 

Erica is the painting expert of the family and spent hours getting the trim painted.

Erica is the painting expert of the family and spent hours getting the trim painted.

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He's done a lot of work to find a home for us and get it livable. I'm proud of him!

He’s worked hard to find a home for us and get it livable. I’m proud of him!

My brothers, Brad & Aaron and also my sister Rozi scraped the ceilings.

My brothers, Brad & Aaron and also my sister Rozi scraped the ceilings. A very dusty job!

ripping out the cabinets in the kitchen.

ripping out the cabinets in the kitchen.

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My local aunts brought lunch for everyone.

My local aunts brought a delicious lunch for everyone.

 

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The finished product at the end of the day.

The finished product at the end of the day.

I wielded a paint brush for a fraction of the time, but the ladders made me a bit too dizzy so I mostly sat and watched or walked around documenting the event with my camera. It’s an overwhelming feeling to watch so many people tackle a project like this and know that it’s because they care about you. Joe & I are so blessed!

That evening the young people played volley ball and Joe and I went to watch. It had been such a long time since I had played and it looked so fun! Joe & I had never played together before… and what young Mennonite dating couple hasn’t played volley ball together? So I played. =) And it was fun even if it was a short, slow paced game. I knew I’d trigger, which I did about 15 minutes after I stopped playing, but it was worth it. My mom was rather surprised at me and I think I probably won’t make a habit of involving myself much more than cheering from the sidelines.

There are only six and a half weeks of school left! My students are so much fun! They are so involved in my life. They like to know what’s going on with the house and when I took them over to see it one day they were running from one end of the l.o.n.g. trailer to the other exclaiming over different features. They have claimed the guest room. Literally. In fact, one little girl went home and told her mom, in all seriousness, that in “our” room the closet has two doors. =) We also got to watch them drill the well which was especially interesting for my 2nd grade boy. They keep tabs on how much longer it is until the wedding and we’re just all excited together.

It’s 73 days and counting down! =)





The Perfect Dream

27 01 2014

In October, my sister Erica went on a short term mission trip to a children’s home in Haiti. She cared for the children there while one of the nannies went home on furlough. She had been there before and was very much anticipating being with the children again.

Lovena is 21 years old and weighs 20 pounds. She had been neglected by her family for most of her life and has recently been taken in by the children's home.
Lovena is 21 years old and weighs 20 pounds. She had been neglected by her family for most of her life with no chance to pursue any dreams of her own. She has recently been taken in by the children’s home in Haiti where Erica was.

As I watched her pack her suitcases and prepare for being out of the country, I found myself thinking back to my own globe-trotting days with a sense of longing. Then, when she returned home with her many stories of the poverty of Haiti and the needs there, I thought again of my desire as a teenager to be a foreign missionary.

I wonder sometimes why God does not allow those who want to go, to be able to serve him as a missionary. Then there are those who have the physical capabilities, but do not want to give up the comforts of home. Or those who are sent, but say, “God, it’s the wrong country! I wanted to serve those people over there!”  Seems ironic.

But then perhaps we depend too much on our own desires to interpret God’s will for our lives. There are many different ways God can use us if we are willing to give up our own will.

Several months ago, I was asked to write a guest article for Daughters of Promise, a ladies’ e-zine, on the topic of surrendering our dreams to God. It was good for me to write this article because I felt it helped me to face some of my own struggles and be able to surrender my dreams more completely to God.

I decided to share this article with you… because I know many of you have faced this same struggle of giving up your dreams.

You can also click  here to read it on page 28 of the NovDec issue of Daughters of Promise. I thought Rachel did a wonderful job with the graphics and they have lots of  articles that are worth reading!

The Perfect Dream  

Definition of a dream:  A condition or achievement that is longed for; an aspiration

As little girls, we grow up dreaming of our future. We have dozens of things on our list to be, “When I grow up.” As we get older, those childish dreams evolve as we discover our talents and interests. We are encouraged to follow our dreams and let no one stop us.

But what if God does?

What if the doors we long to have opened stay firmly closed or worse yet, slam in our faces, just as our feet reach the threshold.

As a teenager, my ambitions were so numerous I would have accumulated quite a few years before I had achieved them all. I love children. I have a passion for teaching and I love the challenge of special education. In my younger years, my family spent six years as missionaries in Belize, CA and throughout my life; my parents have fostered a love of missions. I wanted to marry, someday, and have about six kids; but after I accomplished a few other things.

I had plans for my life, and many of them were being realized.

Between the ages of eighteen and twenty-one, I took six, short term mission trips, enrolled in three terms of Bible School, taught two years of school, took photography classes and did a lot of socializing with my friends.

I had hopes of getting more education and then possibly going to a deaf school in El Salvador as a teacher.

I was busy, probably too busy, but I was pursuing my dreams.

And then those hopes and dreams were shattered by a very unladylike seizure. At church no less! As the EMTs wheeled me through the double doors of our church that cool November evening, I remember thinking, “Well Lord, What now?”

The months that followed were frustrating. No one seemed to know what was wrong with me. I did test after test and tried several doctors. All the while I was growing more and more sick and also discouraged. I really didn’t have time to be sick! I needed things to be figured out and then I could move on with my dreams!

God had much to teach me.

Within seven months’ time, I went from being a busy elementary school teacher to an invalid, spending 90% of my time in a hospital bed set up in my family’s living room and depending on a wheel chair for transportation. I dealt with excruciating pain that no amount of drugs or massaging could relieve. My mind began to betray me as my memory and ability to hold or follow conversations started to decline.

I was eventually diagnosed with late stage neurological Lyme and God miraculously provided a doctor. “Now!” I thought to myself. “I’ll take these meds, I’ll do whatever they tell me to do and then I can get back to my life.” But my journey with illness was far from over.

The treatment had extreme side effects. Some medications gave me severe nausea, another would make my teeth hurt, while still another caused my skin to become extremely sensitive to the point I couldn’t stand for even a sheet to brush against me. Once a medication caused such an extreme hurx-heimer reaction that I spent ten days in the hospital with uncontrollable seizures.  But I pushed on with a determination I didn’t know I possessed. I had to get well!

But as the months passed I began to realize that I needed to let go of my dreams for my future. Life was passing me by and God was obviously closing those doors. He had a new purpose for me and that was to be sick. I fought this for quite some time.

“God!” I cried, “these are good dreams, things that would further your kingdom! Why must I give them up? I wanted to be a missionary, why would you make me sick?” But finally one night I took my notebook and began to write out each of my dreams and give them back to God. The dreams for the future were difficult to give up, but not as hard as the things that affected me right then such as giving up my classroom, watching my friends move on in life, and losing my independence.

“God,” I prayed, “If I must give up my dreams, then you dream for me. My life is yours.” I found a verse during this time that continues to be very special to me; “I cry out to God most high, to God who fulfills his purpose for me.” Psalm 57:2

At long last the harsh treatments began to pay off and I began the slow recovery process. I cautiously entered a world that, to my surprise, had been spinning on its axis quite well without me. It was difficult; trying to find “my place” again. But I accepted a job as an aide a school and once again began to immerse myself in education

The following year I agreed to teach a small class of three first graders and one third grader. I was excited about it, but also rather nervous. While I was doing quite well, I continued to have “flares” every so often as well as constant pain. Though my brain fog was getting better, I knew it would be a challenge, and I hoped I would be reliable.

Then after almost two years of being seizure free, they invaded my life again. I was devastated! I took a 10 week leave of absence from school and someone else took on the task of teaching my precious students the things I wanted to teach them. What should I do now? Should I give up my job entirely? What was best for my students? They’d already witnessed a petit mal, when I’d fallen from my chair one day. Was it fair to put them in these situations? I struggled with God’s timing. I thought I’d been following His will when I accepted the teaching job. Had I misunderstood?

The struggle to give up my dream of finishing the school year was just as intense as when I’d gone through my list of long range goals and given them to God. Finally, I felt at peace. God had a plan, even though I didn’t know what it was.

Near the end of December, 2012, I began to feel much better. It was as if someone had flipped a switch and the next six months were the healthiest and happiest I’d had in years. I finished my school year and agreed to teach again. My summer was filled with plans of traveling and projects to tackle.

After eight amazing weeks of summer vacation, reality struck a hard blow. My boyfriend, Joe, and I were sitting at a park when I became chilled and began to shake. We got up to leave but my back was jerking hard enough that I had difficulty walking to the car. We headed for home, but I was already twisting and jerking in the passenger seat. Ten minutes after we arrived home, I was in a full blown seizure and the nightmare began all over again. Those same feelings of despair and needing to release “my plans” to His will returned.

Another hospital stay, but this time things were different. Through another miraculous turn of events, it was discovered that I had developed Dystonia within the past year. Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily and was possibly caused by the brain infection.

Dystonia is incurable but treatable. Triggers may happen at any time. At first this diagnosis was devastating to me.

INCURABLE.

It seemed the only word to penetrate my brain. Although I had given up my dreams long ago and had asked God to dream for me, things had been going so well with my health that I realized I had dared to plan my life again.

It felt as if God was saying, “Wait a minute, Andrea, You gave ME the right to that remember!?”  Yes, I was remembering all too clearly. Dystonia is so unpredictable and I was learning how to be flexible in a whole new way.

The saying goes: “To accomplish great things we must dream.” Long ago Florence Nightingale dreamt of clean hospitals with trained nurses. She pursued that dream through much opposition but, because of her courage, I, for one have benefited greatly!

So is it wrong to dream of great things? No, I don’t think so. However we must be certain follow God’s will and not our own desires.

Sometimes God allows things in our lives to prepare us for something much greater than we could imagine. For a long time I hung on to my “perfect dream” bemoaning the fact that it was now impossible for me to accomplish. But when I am honest with myself, if I had my health and energy back and my doctor gave me permission to travel anywhere I wanted, those dreams I’ve held so tightly would not even be what I wanted. I would probably pursue some type of hospital ministry with children. Because of the journey on which God sent me, I can relate to patients facing illness and life changing diseases much better than I would be able to relate to a deaf child.

But who knows? Maybe God doesn’t have that type of ministry in mind for me either.

A friend once sent me a card with the verse, “Take delight in the Lord, and he will give you the desires of your heart. Psalm 37:5”

I struggled with this verse for a long time. I knew what my desires were, and they were not being realized. How could this verse be true? But someone challenged me to think of what my utmost desire is. Would it not be to glorify God? If I could be joyful in everything then God could be glorified and the desire of my heart would be met.

As Christians, our ultimate purpose is to bring Glory to God. That should be our goal. If we are open to these opportunities, God will send them our way. We just need to learn to look for them. I’ve learned to find fulfillment in school. I dearly love my little class of six students, and enjoy finding creative ways to teach them practical skills and spiritual truths. I also have a weekly devotional period with the high school girls that has been a blessing and challenge to me. I can’t count the number of times my illness has opened the door to show God’s love to other hurting people.

So does God have something for me to do? Absolutely. Am I serving Him the way I’d always dreamed? Perhaps not exactly, but if the end result is the same than who am I to argue?

What about God’s dreams for me? I can say I’ve been delightfully surprised at his blessings. Not only has He allowed me to pursue my passion of teaching, but He’s also given me a great team of co-teachers who go out of their way to help me fulfill this dream. My family is amazingly supportive and will do anything they can to help me complete a project. God also sent a really awesome young man named Joe into my life about 18 months ago. Joe loves me for who I am, seizures, awkward walking, wheelchair, cane and all. He considers it his life’s mission to help me accomplish whatever opportunities God sends my way. And since he’s good at so many things, I think it will be interesting to see what kind of opportunities they are!

Do you have dreams for the future that seem to be dashed time and again? Look around and notice the opportunities that God gives you. Make that your dream. And perhaps someday you will realize that the dream of your heart was to simply be useful in His kingdom.

As the article states, it seems we must deal with these struggles over and over again. I’d love to hear some of your comments about surrendering your dreams to God. What is something that is helpful to you?





School Days and More

21 01 2014

photo 5It’s hard to believe we’re in the 3rd quarter of school already! My co-teacher informed me last week that there are 72 more days left in this year!

I feel so incredibly grateful that I’ve been able to teach. It’s not been without it’s struggles! School takes a lot of energy and the responsibility, which was draining when I was healthy, is even more so now. There are quite a few days that school is barely over till I’m out the door, headed for home and a nap. But my sick days have been far fewer than last year and I’m enjoying the privilege of teaching. My sister Rozi was a tremendous help especially at first and then she would go in one morning a week to give me a break. But she’s currently at Calvary Bible School for six weeks and I’m learning to survive without her.

I began the year with six students. Four second graders and two kindergartners who come three days a week. I’ve made a lot of progress since school started but at the beginning I was still using my wheelchair some and my cane all the time. This made for some interesting times! I usually wheeled myself around in my wheelchair, but they absolutely loved the “privilege” of pushing me. My class has PE with the middle room and once at break they played “King’s Base” and so I allowed the older ones to push me and I could get caught. Now that was an interesting experience!

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Before long the wheelchair stayed folded in the corner and I had graduated to teaching from my desk chair and slowing began standing and walking around more. Now sometimes I’ll be standing almost an hour or so. Progress! =)

I had several weeks at the beginning where I was dealing with migraines. But I started Topamax and the tiny little pills have been doing a fairly good job of tricking my brain most of the time.

My students have a pretty good understanding of sickness and the medical world. I love to hear them pray each morning for the different people in their lives who are sick. “Just help him to know that you love him.” was the prayer one morning. And another time, “Please just make his disease go away.”

Sickness and being different doesn’t scare them. When my med alarm goes off, they will start chanting my name till I take my pill. They talk about me triggering like it’s just another normal event like going to town. Bless their hearts, if I go somewhere when I get back they will ask me, “Did you trigger Miss Andrea?”

Then one day they came to a startling realization. “Miss Andrea! You’re probably gonna trigger at your wedding!” they cried.

Then they put their heads together to come up with a solution. “If you trigger! Joe can just carry you.” they decided.

One week I had a touch of the flu and was triggering everyday. So they came to my house and we had school here. They had such a grand time and considered it an adventure and not an inconvenience.

A few school happenings….

I’m mostly just going to post pictures since I think that does a better job of portraying children than words. =) I don’t always keep my Canon 50d with me since it’s so much easier to use the iPad Joe gave me for my birthday to record the many photographic moments of school. So the quality of photo doesn’t exactly always match the quality of the memory. =)

They created a very original piece of artwork that now hangs in our classroom.

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Having class outside is something they often beg for. We don’t do it very often because it’s a little more difficult with Kindergarten AND second grade but one day the big boys moved our class table outside to the porch for us…

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We made brownie cupcakes one day.

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Happy Birthday Shaina!

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One day the 2nd graders got to drawing on the board. They decided to draw pictures of Joe and I… I was very amused by their imaginations.

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My favorite. The children are hiding behind the bushes watching Joe & I at the park.

My favorite. The children are hiding behind the bushes watching Joe & I at the park.

One of my students moved to the far away land of Cambodia in December. Before she left, she picked out several things she wanted to do with our class. One of those was dress-up day.

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We had a princess, a cow girl and a fine lady who still had to write their spelling words despite their new looks.

We had a princess, a cow girl and a fine lady who still had to write their spelling words despite their new looks.

The cowboy refused to be distracted by the ladies.

The cowboy refused to be distracted by the ladies.

and our resident doctor and his helper the little indian girl patched up poor George after some mishap.

our resident doctor and his helper, the little indian girl, patched up poor George after some mishap.

And she wanted to go ice skating. Joe took us one day. I LOVE to ice skate and since I was feeling well, I decided put on skates too. (or wait, maybe Joe convinced me) Anyway, I went out on the ice for about 15 – 20 minutes at a time, then I’d take a break and with the help of a preventative med the triggers stayed away! We almost had the rink to ourselves and there wasn’t much noise, so that helped a lot.

The kindergartners had never been ice skating before and so I had fun teaching them how. I was so proud of them for trying so hard!

They were so excited and then they were very scared! =) It took a lot of coaxing to get them to let go of the wall!

They were so excited and then they were very scared! =) It took a lot of coaxing to get them to let go of the wall! “Put your hands out to keep your balance!”

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I knew he’d love it if he just got over his fear of falling so I got pretty stern with him. And sure enough… by the time we left he was having as much fun falling as skating and didn’t want to leave!

It was Delana's first time too. But after only a little coaching she did well on her own.

It was Delana’s first time too. But after only a little coaching she did well on her own.

We all dreaded the day Carissa would leave. She was a very important part of our little classroom. But the days prior to her departure were filled with talk of Cambodia and being a missionary. In fact one day they had a new study word in science, “camouflage”. One of the children was attempting to read it and triumphantly cried “Cambodia”! Yup, Cambodia was definitely on the brain!

Finally the last week arrived. The children had been working on a t-shirt for Carissa to take along and we gave it to her on that final day of school.

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Hmm! No sense in leaving lots of paint in the bottles! =)

Hmm! No sense in leaving lots of paint in the bottles! =)

We were all sad to see her go! But I know she will make a great little missionary! She was praying for the “kids in Cambodia” for weeks before her departure.  You can read about her adventures in Cambodia on her sisters blog, Cambodian Chronicles.

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We miss her, but life goes on and it was time for the Christmas program. My co-teacher always does more than her share, but the month of December was a tough one for me and she went the second mile. I, of course, wasn’t able to actually help the night of the program because of the crowd so she was responsible for my students as well as her own.

My 2nd graders signed Silent Night and did a great job. Braydric was sick on this day...

PRACTICE!!! My 2nd graders signed Silent Night and did a great job. Braydric was sick on this day…

my amazing co-teacher who does far more than her share!

my amazing co-teacher who does far more than her share! She’s got a big heart!

It was the day of the program and we were listening to the upper grades during the final practice, and of course there’s no possible way little boys can hold still! =)

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After weeks of practicing it was finally time for the long awaited Christmas party!

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We’re getting back into the swing of things after a long vacation and it’s been good. My kindergartners have been longing to read and last week we finally learned some words. MAD, SAD, & DAD. They are so proud of themselves and I’m proud of them too! They’ve had a lot to learn, still do! But they are both very eager. I especially love when I ask the 2nd graders a question and my kindergartner knows the answer from listening in. =)

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For some reason they consider it a very special treat to do their work "under the table" =)

For some reason they consider it a very special treat to do their work “under the table” =)

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My kindergartners are learning to work independently but it is still a time of life when almost constant supervision is needed. So sometimes when she is finished with her work Amber will come over from the middle room and help me out.

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We have a fair amount of class discussion that can be anything from prayer and accepting Christ to President Lincoln’s assassination and how we should view our government. Those little minds think when you give them something to think about and I love to hear their conclusions. We have a lot of fun at school and in many ways we’re in our own little world. But we love visitors so if you’re in the area please stop by! =)

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Happy News

7 12 2013

IMG_7096This doesn’t have to do with health… or wait, yes it does!

There’s a popular line that goes… “in sickness or in health”. But what does that have to do with me? A whole lot!

On November 1, 2013 my boyfriend, Joe, took me to this very romantic covered bridge, the only one in South Carolina!

I was happily taking pictures of the gorgeous fall scenery and just enjoying the day when he said he had a surprise for me. Then he produced a single red rose, went down on one knee and proposed. Of course I said “Yes!” and we are both very happy! =)

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Really though, I feel very blessed. It’s amazing to me how God has scripted this chapter of my life. It’s a chapter I’ve kept a little more private. It seemed that everything else about my life was so very public, but this was mine. =) Perhaps someday I’ll write our story.

The last year and a half have been quite the adventure. Joe and I are nothing alike, and yet those differences are what make our relationship work. One thing that amazes me is how he is so accepting of my health challenges and how it affects my future.

We’re planning to get married on Friday, June 6th, 2014. So we have about six months in which to plan a wedding!

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One thing that worries me, as much as I try not to allow it, is the fact that we are setting a date 6 months in the future and for the past four years my health has been anything but predictable! I would love to be able to walk down the aisle on my own and feel well enough to enjoy the day. But I also want to be open to whatever will bring God the most glory. So may I ask you many dear people to pray with me?





…of non-grandma walkers and the beach

27 10 2013

blog5 …no offense to all you very dear, older ladies who depend on shiny, silver walkers; but I’m several decades younger than you are and I guess I rather like color. =) And here is the “new & improved” walker. Many thanks to Jen who commented here on the blog and gave the suggestion of using duct tape. I’d have never thought of it!

Two of my best friends worked long hours on the printed zebra strips. There were some very tricky parts as we couldn’t take the walker apart. But they stuck to it! And then we girls couldn’t figure out how to get the wide blue duct tape to wrap neatly around the curved sides of the walker. We almost gave up and used some narrow purple duct tape when my brother Bruce thought of a way and used some of his rare free time to finish it for me. But I actually rarely use my colorful walker anymore. It is folded up and stored behind my bedroom door for extra-bad  triggers. I prefer my cane, when I need some extra support, because it’s less bulky.

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I’m learning how to use my medications to control things. If I’m going into a situation that seems a little trigger happy, I can adjust my medications accordingly. I can’t always avoid the triggers, but they don’t usually get quite as severe and I get a little more time in a crowd before I have to call it quits.

So far my max tolerance for shopping trips or crowds before my muscles act up is about two hours, which my neurologist says is very good. She says I shouldn’t expect to gain a whole lot more than that and to just learn to plan shopping trips around that two hour mark. And that’s when I’m glad online shopping was invented!

You gotta love these ladies!

You gotta love these ladies!

My girl cousins on the Wagler side have a tradition of going to the beach for several days during the summer. This year we rented an old, charming, gray house with crooked walls that was within walking distance of the beachfront. When I was in the hospital, I’d thought I would need to give up on going but I was feeling fairly well and the girls said they would carry me if need be. I checked with the Edisto Island fire department and they had beach wheel chairs, first come first serve. We were set to go! =) And what a great time we had!

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Whatever would I do without my sisters?

I mostly enjoyed sitting on the beach and watching the girls jump waves, but one day we went to the bay where the water was calmer and they convinced me to get in. Rozi said she would hang on to me and so I ventured out into the shallow water. It was a bit cold and I felt something just give in my back muscles. When we decided to go back to land, I was unable to walk at all. Rozi and Tinslie carried me in to shore and then later up the stairs to our house. I hadn’t realized, at that point, that cold was a trigger for me and so I was rather unsettled by this incident.  By the next day my walking was better again, but I stayed on the beach for the remainder of our time.

He was ugly, but I got rather attached to him. =)

He was ugly, but I got attached to him. =)

We just began our second quarter at school and things seem to be settling into a routine. I don’t get quite as tired as I did in those first weeks and things just seem to be running more smoothly. I’ve been enjoying my students immensely and have taken only a few sick days. God has been good to me!  Watch for a photo post of school happenings coming soon!

My neurologist told me that the episodes that  could land me in the hospital would likely be triggered by getting sick with something else. And that’s where Lyme and Dystonia won’t mix very well.

So… this coming week I will be starting an eight week course of low dose of IV antibiotic as a preventative against lyme flares. I haven’t been on antibiotic for a year now so I’m likely to have a bit of a “bump” as it breaks through the biofilm and hits the spirochetes who’ve been hiding. I don’t expect to get really, really sick, probably just rather uncomfortable. I’m trying to take a few precautions such as a few days off school ect but I’d appreciate your prayers as I get back into to groove of IV therapy.

One cool thing about this means I’ll get to see my nurses on a regular basis since I’ll have to go for labs again. And this time I have a port so NO NEEDLES! =)





A Second Diagnosis

15 09 2013

Thursday, August 22nd was a huge day.

Not only was it the first day of school but it was also the day of my appointment with the movement disorder specialist in Greenville. My parents went to Indiana for a funeral that day and so Joe came to take me. I taught school from 8:30 to 10:30 and then went home to rest because the teacher can’t just totally miss the first day of school!!!!

Dr. W. gave me the official diagnosis of dystonia.

What is dystonia? Taken from Dystonia Medical Reseach Foundation: Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom.

Wow. So how did this happen? Have I had Dystonia all along? How did I get it or is this just random?

Dr. W. tells me that it seems the dystonia has developed within the last year and is a separate condition from the Lyme disease. Some of the symptoms I had/have, she says are Lyme related and are not dystonia. The last time I was in a wheelchair in 2010 she said was because of Lyme and had nothing to do with dystonia. It’s a little confusing!

Initially they thought it was genetic but it doesn’t fit the pattern and there’s nothing to trace it to. Dystonia can occur randomly but it can also be caused by other diseases and brain infections. Hmm, the only thing that really makes sense is a brain infection and I have a positive blood test that diagnosed me with Neurological Lyme. A brain infection. But there is no way to tell for sure. They’re are still doing research on dystonia and there is much we do not know.

There are many different kinds of dystonia, so which one do I have? Dr. W. says we could do all kinds of expensive testing that may or may not tell us. And since it wouldn’t change the treatment plan, she recommended that we just move on.

I do however seem to fit the pattern of Paroxysmal dyskinesias. And when I looked up videos of this on you tube, I felt as if I were watching myself having an episode.

Paroxysmal dyskinesias (PD) are episodic movement disorders in which abnormal movements are present only during attacks. The term paroxysmal indicates that symptoms are noticeable only at certain times. The term dyskinesia broadly refers to movements of the body that are involuntary. Between attacks most people are generally neurologically normal, and there is no loss of consciousness during the attacks. Some people get these attacks several times a day and some people several times a year.

There is no cure for dystonia but it is treatable. I’m taking sinemet 3 times a day and hoping to get into a physical therapy program designed to retrain my muscles so they don’t bend backward so far. Dr. W. told me that typically people don’t get worse after beginning treatment and things should actually improve. Wow! that was nice to know!

Interestingly enough, dystonia is considered rare and hard to diagnos. Many doctors do not even know what it is. This is why the Neurologists were stumped before Dr. W. came on the scene.

“You had everybody at the hospital freaked out!” She laughed. “But not me. I knew exactly what was going on when I saw you because I see it all the time.” Thank you God for Dr. W!

Much of the emotional pressure I was feeling lifted after I had absorbed the news of this latest diagnosis. There is something so unsettling about the unknown. And even though I knew that’s what she was considering, I felt as if I didn’t know what to expect from life. Some forms of dystonia are so crippling and I didn’t know which form I had.

So many people were relieved to hear it was dystonia. At least it’s not something worse, they said.

imageBut to me it was still another disease to accept, process and deal with. It’s taken a bit to learn the ropes. What the triggers are and how to deal with them. For me the triggers seem to be when I get cold, stressed or fatigued. Then I will either begin to shake and/or my walking gets worse. Sometimes, if it’s the cold that triggered it, my body will just not be able to move for a bit.

I simply do not walk long distances and so the wheel chair comes in handy. Especially the lightweight one a friend, Betty Miller, found at a thrift store for $25! I was about to bite the bullet and buy a new one but God provided! It’s missing the leg rests and has a few things that need to be tightened up but Joe can probably fix it. I’m happy! But I now know about as much about the different makes of wheelchairs and their accessories, as my siblings know about cars. Makes me feel a little superior! =) Hopefully things will continue to improve so that shopping will be something I do on my own two feet again!

Something else I worry about is how the two diseases will manage to co-exist. But I know I’ve got an amazing doctor for each and now that I have something to go on, I can move on with my life.

Neuro Lyme and dystonia. What a pair but they’re here to stay. Guess I better make them feel welcome. =)





Yeah I’m Alive!

14 09 2013

Wow! six weeks and I haven’t updated this blog. I’ll let you in on something, if the blog is silent,

it probably means I’m incredibly busy

-or-

I’m trying to process a lot of things emotionally and I’m not sure how to put it into writing or if I want to share it.

This time it was a little of both.

School has started and it’s taken almost every scrap of energy I have. But more on that later.

I’ve also learned that when I initially get sick, I don’t usually process things right away. I focus on surviving the physical ailments and then later, when the “excitement” dies down, that’s when it can get tough emotionally.

Several weeks ago, I wrote a post but wasn’t ready to publish it. Here it is now and I’m working on another post to let you all know the results of that long awaited appointment with Dr. W. 

written August 19th:

“God won’t give you more than you can bear. He might let you bend , but he won’t ever let you break.” -Unknown

I came across this quote one night when I was feeling very close to breaking.

I’ve been working through a lot of different emotions. I find myself blinking away tears and trying to find the balance between moving on and allowing myself to grieve this latest development.

Problem #1

My walking abilities are very sporadic. Sometimes it’s a cane, the next time it’s the walker and if it’s a lot of walking such as the park or shopping, it’s the wheelchair.

If I’m tired or overdo it in any way, my walking gets worse. Then I just have to rest a lot and it gets better.

The other day Rozi took me to town to do some school shopping. I was doing pretty well with my walking and so we decided to leave the wheelchair at home since it’s so heavy to lift in and out of the car.

Wrong decision.

imageI used the motorized wheelchair in Walmart but had to walk everywhere else. By the time I got home not only was my walking atrocious, but also the strength in my legs just gave out and it took both Bruce and Rozi to get me to my room.

One day while sitting at the park with Joe, and my trusty wheelchair, I found myself just watching people walk and being amazed at how effortless it was for everyone else. I’m thrilled that I’ve made so much progress with my walking abilities, but what if this is as good as it will get?

What if I’ll always walk this way?

It’s not fun.

It changes a lot of things.

It hurts when my neck and back twist.

And people stare. Not that I care much about that, but I do notice and appreciate the folks who aren’t rude. =)

Problem #2

Last spring I agreed to embark on my 5th year of teaching this fall. So when I got sick in June I thought, “Cool! I can get this over with now and then maybe I’ll have an entire school year with no major interruptions.” When my neurologists started exploring options other than insanity,  I told them that school started in 6 weeks and I had to be better! “We’ll see.” they said.

School starts on August 22, and I’m better. But not exactly in prime teacher form.

I love to teach, I’m just itching to get back in there, but I’m also scared and feeling overwhelmed. I think about last year’s fiasco and I’m terrified I’ll have to take another leave of absence regardless of what happened this summer.

And sometimes I wonder, “Just what are you thinking? You’re sick and you can’t even set up your own classroom! What are you thinking trying to teach school?”

Problem #3

My unstable walking causes me to rely on my family for many different things. Without them, it wouldn’t be possible for me to try to teach or do much of anything. I’m not driving and so they have to play taxi driver amid their many other duties.

So in addition to them living their lives and pursuing their dreams, they’re having to help me live mine.

And that makes me feel like a burden. Even though I know they love me, I hate knowing they have to make all these sacrifices for me.

So there you have it, my negative thought patterns of the past several weeks. While I’m still struggling with these things, sometimes very intensely. I’m also learning.

I saw a lady recently who had been burned horribly! It seemed that every inch of her face, legs, feet and arms had large ugly scars and her hands were gone. Just stubs right about where her wrists should be. I looked at her and was very thankful for the cross God had given me!

I also met a young man in Walmart. He was being pushed around in his wheelchair by his older brother. We exchanged a few words and connected because of our similar situations.

If not for my own “handicapped” status I would not have known gratitude or been encouraged by these people.

And I’m re-learning the concept of trusting God to handle this coming school year. I think He wants me to be more fully dependent on Him and not my own strength. And if I get sick again… well He does control the universe.  (But I really hope His plans don’t include that!)

My family…well I still feel bad about that.








Moving Out in Faith

An Atlanta family's story: learning to love God and others

Atlanta Childrens Lifestyle Photography by C Smucker Photography

"I cry out to God Most High, to God who fufills his purpose for me." Psalm 57:2

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Life Happens...

everyday, but get's interesting when you are hit with Lyme Disease. I will journal my story on getting through this along with my ramblings on life.

"I cry out to God Most High, to God who fufills his purpose for me." Psalm 57:2

"I cry out to God Most High, to God who fufills his purpose for me." Psalm 57:2

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Battling cancer with love, medicine, and the Giver of both.

No Speed Bumps

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