C.D. Journals – July 18, 2019

“Physical frailties may cause you to miss earthly fun and fellowship, but spiritual resources will enable you to grow stronger on the bed of affliction.” I read this in my devotional this morning and found it very encouraging. Something I dearly needed after the events of yesterday.

I was all packed for a three-day visit at my sister’s. The car was loaded and I was heading out – in my husband Rich’s Chevy Cruze, which I have not driven in months. Normally I drive a Tahoe with great visibility and a head rest that accommodates my C.D. quite well. Unfortunately, we discovered the other day that my Tahoe had become home to a family of mice. So, my vehicle was at work with Rich (who works at a Chevy dealer) where the mice would hopefully be eradicated.

I got most of the way out of my neighborhood, unable to situate my head comfortably enough for a two-hour drive. I drove around the neighborhood a little more, trying unsuccessfully to work it out. The head rest hit me in the wrong place and actually pushed my head forward a bit. Even with my brace on, I couldn’t get it situated. I drove back home and aborted my trip. My C.D. has gotten a little worse since the last time I drove the Cruze and even then I was not entirely comfortable.

My son unloaded the car for me and helped me unpack with tears in my eyes. Yet another limitation caused by this nightmare of a disease. I was frustrated and depressed, not only about not getting to visit with my sister as scheduled, but over the entire situation. It took me hours to pack when it used to take me half that much time. By the time I was done packing I was so sore and tired that I had to rest before I faced the drive. Then, I was thwarted by my inability to get situated in the car – an obstacle I could not overcome.

I feel like anytime I get behind the wheel is even more dangerous than normal now. I even fear having my license taken away, although I’ve not heard of that happening to someone with C.D. As a result, I don’t drive nearly as much as I used to – probably how we ended up with mice in the Tahoe, it sat too much. I hate feeling limited like that. I keep trying to look on the bright side. The quote above reminded me that God has used the “bed of affliction” in my life before. We wrote a Bible study during one such season. I had to stay off my feet for three months. Talk about limiting and frustrating, but God had a purpose in that and He has a purpose now. I just need to stay focused on that and keep believing that He is in control. I love how He sends me little bits of encouragement just when I need it most. Even though very little goes the way I want it to these days, Jesus is good and He is with me. We will get through this and be stronger for it. “The Lord is my strength and my shield; my heart trusts in Him and I am helped.” -Psalm 28:7a

😊💕

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C.D. Journals – June 25, 2019

It’s been awhile since I’ve journaled here about C.D. I’ve been busy with a therapy program that is pretty time consuming, and it’s going to be a long, slow process. I’ve been trying to develop a routine that works for me that I can maintain long-term. There’s no cure for Cervical Dystonia (a.k.a. Spasmodic Torticollis), but apparently there is hope for managing the symptoms. If you’re interested in knowing more about recovery, check this out.

It has been a year now since my diagnosis and I am still trying to figure this out. The disease has gotten progressively worse and I now hold my head almost constantly. I let go for a few seconds here and there when I absolutely need both hands to open a jar, for instance, or butter a piece of toast – things like that. When I do that, however, I have to be willing to let my head go where it wills. That is always to the left, either quickly or slowly, but go it will. I’m learning to do things by feel because sometimes I can’t see what I’m doing due to the fact that I can’t make my head stay straight. I make a MESS in the kitchen these days and now leave the knife work to someone else.

That’s just a small sampling of my new reality. Social anxiety is now a thing. I’ve gotten to the point where I don’t like going anywhere without backup – someone who understands my situation and will provide emotional and practical support. I hate that! It’s not someone going with me that bothers me as much as the fact that I feel I NEED someone to go with me. A lot of times, I’d rather not go at all. I use Amazon and grocery delivery more than I ever have. A big part of that is also the fact that driving is a bit of a challenge now as well. Thankfully, I have an ’03 Tahoe that allows me good visibility and the headrest fits me well. Long highway trips are not as bad as in town where constant head movements are required. I wear a brace when I drive and that helps. Still, it’s not as easy as it used to be.

This disease makes it so easy to give up because it’s a constant physical and emotional battle. Fighting your own body all day is exhausting and disheartening. My arms get tired from trying to hold my head in place while my neck muscles are contorting and contracting, and they do it almost constantly. I take a break every day and lay with my head in a U-shaped pillow, practice breathing exercises and nap for about 30-minutes. The symptoms go dormant when I sleep and the pillow helps hold my head as I attempt to relax. I have NEVER been a napper. I’ve always had too many other things to do and was rarely even tired enough. But, I am now! 😴

I’m not sharing these things to complain as much as to chronicle my journey and what I’m dealing with or learning currently. Right now, I’m still learning to adjust. I’m learning to trust that God allowing this in my life doesn’t mean that He doesn’t love me and still have good plans for me. He does and He will work this all for good. I’m also still learning what it is that I’m supposed to be learning, aside from what I’ve already mentioned. I have a feeling that there are going to be many lessons in this.

One of the more important things I’ve learned for myself is that I don’t want to give in to this disease’s temptation to give up. I need to accept that functioning differently is not giving up. Letting someone else chop the veggies while I do something I can do with one hand is not giving up, it’s functioning differently and practicing kitchen safety. 😉😂 Asking for help of any kind is not giving up. Granted, it’s hard to do sometimes, but it’s still not giving up. C.D. Is just one huge adjustment of almost every aspect of my life . . . and that’s life. As the ancient philosopher, Heraclitus, once said, “The only constant in life is change.” I’m doing my best to adapt to this particular season of change and I think that’s all any of us can do – our best. 🤕

😊💕

New Kitchen Toy

My husband recently gifted me with a new toy for my kitchen that he found on Brad’s Deals.  An 8-qt. pressure cooker that he got for $50!  WooHoo!  Isn’t it pretty?!

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One of the first things I made in it was a super cheesy Mac n’ Cheese, from scratch, in about 20 minutes!  It was awesome and really tasty!

Since then I’ve cooked a roast from frozen to fabulous in about 90 minutes, Egg Roll Bowls in less than 10 minutes start to finish.  I’ve made Curry Chicken, Lentil Stew, and even yogurt!  I am loving this thing!

The kitchen is a more challenging place for me since my diagnosis and as a result, we’ve been eating out more, which isn’t good.  It takes me longer to prepare things and there is a level of frustration that causes me to get a little discouraged and take even longer, or give up altogether.  Then, there’s the whole, “I forgot to thaw the meat!” thing.  With this new pressure cooker, both of those challenges are alleviated.  Even if it takes me longer to do the prep, the cooking time is cut so short that it balances out.  We dont end up eating at 8:00 (which I hate) because I’m a slow poke in the kitchen now, or abandoning the prospect of cooking dinner altogether because I forgot to thaw the meat out.  It’s a win-win!

I’ve only begun to learn all the things I can do with this time-saver.  I’m very excited to try new things in it.  I’m especially excited that I can make my own yogurt again via a much easier process than the crockpot or stovetop, not to mention it’s quicker.  I’m also excited that we got such a great deal!  These things aren’t cheap.  If you’ve never heard of Brad’s Deals you might want to check it out.  Not that this is a plug for them, it’s not.  If you’re in the market for a pressure cooker, that just might be another place to keep an eye out for a deal.  Either way, I’d say a pressure cooker is a good investment for any kitchen!

👩🏻‍🍳😊👍🏻

 

How Exactly?

One of the first things I did after being diagnosed with Cervical Dystonia was find a support group on Facebook.  I wanted to know how to live with this condition; what to expect and how to function in it.  I found a wonderful group of people who share resources and information, and listen when a little venting is needed.  What I did not find was step-by-step directions which is how I roll.  Drawing me a picture is even better or actually seeing someone live their day out with this condition would be ideal.  Funny thing though, I don’t know a single person with Cervical Dystonia except those I’ve met on the Facebook page.  I have never even seen anyone who seemed like they might have it in my comings and goings out in the world.  Where are they all?

That question was asked on the support page once and someone answered, “We’re hiding in our homes.”  That would be one way of dealing with it I suppose.  I spend a lot of time at home anyway and some days it is definitely the more comfortable thing to do, but comfortable gets boring after awhile.  I don’t want it to be said of me after I’m gone, “She lived a comfortable life.”  I want to be remembered for having done something with my life, for having triumphed over adversity, for being brave and bold – not comfortable.  I’m not quite there yet though.

I think I’m still coming to grips with my new reality and still mourning a little for what I’ve lost.  I’m still trying to figure out new ways to continue doing the things I enjoy. I’m still searching for my step-by-step directions.  And that’s the thing.  I’ve been trying for months to figure out how other people live day-to-day wth CD.  What I really need to figure out is how am going to live day-to-day with CD.  How other people live their lives is not as important as how I live MY life.

I’m not saying it’s not helpful to seek suggestions from my fellow afflicted.  I believe that is absolutely valuable.  The problem was that I was looking for someone who could tell me exactly how and I don’t think that’s realistic.  We are all different.  We do different things in different ways and in different environments.  I need to figure out how to cut vegetables, for example, in my kitchen with my knife while my head is moving without cutting off my fingers.  I need to work out how to sit and support my head so that I can at least semi-focus on whatever crochet project or book is in my hands. Thank God I can type without looking at the screen or the keyboard.  😂

Most importantly, I think, I need to let myself cry when frustration overtakes me and I want to throw whatever I’m trying to do against the wall (I don’t think I should do the throwing though.  Crying is less destructive.)  I need to be okay with being broken and cut myself some slack.  I need to stay as positive as possible, let the tears come, rest when I need to rest, then get up and get back at it.  Life is a gift and I want to enjoy as much of it as I possibly can.  I think one way to do that is to accept the fact that there is no EXACTLY how and just find MY how.

🗺😊

The Dark Side Has Cookies

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Photo by Brigitte Tohm on Pexels.com

“Let Jesus comfort you in your pain. When we suffer, yet show joy, we glorify God because we can’t do this on our own. This is the work of the Holy Spirit in us. God wants you living in freedom and joy now regardless of what you’re going through. If you focus all your time on what isn’t, you will lose focus on what is.” -Just Jesus Devotional

This was part of my devotional commentary this morning and it really spoke to me.  Living with Cervical Dystonia is a painful and frustrating experience.  It could be a very dark place if I only focused on what I can’t do anymore or just the pain and frustration.  I am a melancholy personality and it wouldn’t be that hard for me, but even I can’t stand the thought of such a negative life.  How sad and wasteful!

Every life that God creates has value.  Regardless of what society says about our worth; whether we’re pretty enough, rich enough, productive enough.  God says we are enough and we all have a purpose here.  Not only that, but there is beauty all around us to bring us joy.  Sunshine, blue skies, sunsets, bird song, the sound of rain, cool breezes, the scent of flowers.  There’s something for all the senses.  If we can’t see it, we can hear it, if we can’t hear it, we can smell it or feel it.    Focus on what IS – find your purpose and find a way to bring beauty into your life.

There is always a way.  Sometimes it takes a lot of thought and determination to find it, but I believe there is always a way to find good in a seemingly bad situation.  For me, Jesus is my comfort and He reminds me of the good in my life when I am tempted to the dark side.  On those days when I start to focus on what isn’t He reminds me of what is; He loves me no matter what, I have a husband who is my best friend and supports me unconditionally, my life has purpose, I have people who love and depend on me to stay positive (little and very important eyes are watching me).  And there are so many things I am still capable of doing and doing well.  I am grateful and thankful for all of my blessings and most of all that I don’t have to do this alone.

Jesus has physically healed me in the past.  In 2005 He healed me of Fibromyalgia.  You can read about it here if you’d like.  So, I KNOW He can.  Whether He wills it for right now remains to be seen, but whether He heals my physical body or not, He has healed my soul for all eternity and that is even more important.  I WANT to live life now in the freedom and joy that is mine in Jesus Christ.  That is a choice I get to make every day – joy or despair.  For the glory of God, the good of myself and my family, joy is my choice. It’s not always easy and, like I said, some days the dark side beckons hard.  They have cookies, after all.  😂(that’s sort of an inside Star Wars joke.  I couldn’t resist).  See!  Joy everywhere!  Even with cookies though, it’s not worth the negativity and I always have help resisting, praise Jesus!  Whenever I call, He’ll pull me back.

🍪😡🙏🏻😃

A Very Thankful Thanksgiving!

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The food table. We did buffet style this year.

I know Thanksgiving has passed, but now that I’ve had some time to reflect, I’d like to share some important things that happened and for which I am truly thankful.

As most of you know, for the past six months or so I have been living with Cervical Dystonia.  What that means is that doing simple tasks is no longer simple.  Pain, frustration, and a soft neck brace are now my daily companions.  So, as you may imagine, the thought of cooking a Thanksgiving feast was a bit daunting.  The past few years my sister has been doing most of the cooking with everyone else bringing a dish or two.  This year, however, she was blessed with the opportunity to spend Thanksgiving in Hawaii with her son.  So, Thanksgiving at my house was on this year.

Praise Jesus, I had some help!  My sweet daughter brought several dishes, two of which were family traditions that I handed over to her.  My son and husband were big helps as well.  I feel I should stop here and explain that my idea of a Thanksgiving feast includes appetizers, a plethora of desserts, and a drink station to rival Buccee’s (that’s Texas for 7-eleven on steroids).  Just for fun, this was our menu plan:

164C0249-4EDB-42CC-8A38-B5681764275BOh!  We added deviled eggs which I boiled, two of my grands peeled, and Shauna deviled once she got to the house Thanksgiving day.  I also added Pumpkin Bread to the dessert list and the cocoa was homemade from scratch, as was everything, actually.  So, what happened that made me so thankful besides the availability of all this amazing food?!

Aside from all the help of my awesome family (my grand-girls Leah and Karlyn were especially helpful), I was able to do all that I did!  Two days of shopping and three days in the kitchen – cooking, baking, cleaning, and prepping.  I wasn’t sure that everything on the menu would make it to the table, but it did and then some!  We fed eleven people at a beautifully set table and the food was amazing!  In addition to all of that, we also had a thankful tree that my grands crafted and hung by the front door.  Beside that was a basket of leaves, pens, and tape so everyone could fill out a leaf with what they were thankful for and hang it on the tree.  I think we filled it up pretty good.  😊

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I am amazed at God’s goodness! At one point during our planning and doing, my daughter, Shauna, said to me, “Do what makes you happy!  If it’s more stressful than happy, just step back from it and breathe instead.  We’re gonna love you either way, it’s going to be a great day!”  How sweet is that?!  And, she was right.  That’s exactly what I did and it all came together . . . beautifully!  In spite of missing some significant loved-ones, it was a fantastic day!  Great food, lots of love and laughter, and much thankfulness!

And today I rest!  I’m not gonna lie, I’m a little wiped and my neck muscles are a little more unhappy than usual.  All-in-all though, I feel extremely thankful, grateful, and blessed!  Bring on Christmas!!

🎄😃💕

The Strength of His Presence

“When I let Jesus walk with me through fiery trials, what I remember most is not the suffering but knowing a God so great and so good, that my life was forever changed not because of my pain but because of the Strength of His Presence.” -Just Jesus Devotional

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This was a quote from my devotional this morning.  I want this!  I want to know the Strength of His Presence in the midst of my suffering.  I want Him to be glorified through my life.  I want His goodness to be obvious in spite of  the pain, or maybe because of the pain.  Sometimes I struggle with the whole “good God, bad things” situation as much as anyone.  My brain is too literal and analytical sometimes and I just don’t get it.  He is good, loving, and all-powerful so why doesn’t He just make all the bad stuff go away?

I’m not a theologian and God’s ways are way above mine.  I know He has a plan and a timeline, and apparently things need to play out a certain way.  Why?  I’m not entirely sure.  What I do know is that regardless of anything I think I know, God knows it all!  He sees the whole world  and all of time in a way we can’t.  That is why we Christians walk by faith and not by sight. “Now faith is the assurance of things hoped for, the conviction of things not seen.” –Hebrews‬ ‭11:1‬ ‭NASB‬. ‬We are convinced.

I am convinced that Christ died for me, was resurrected for me, loves me and wants good things for me.  I am also convinced that His “good things” are not always the same as my “good things”.  I am convinced that His Word is true and that He knows best.  I am convinced of these things and many more, and cannot be swayed from them because my Heavenly Father was gracious enough to make Himself known to me in very personal ways during the 23-years that I’ve known Him.  Once you experience the Presence of God, you will never be the same.

So, even though I don’t “get” it all, I have faith that Jesus is in control.  He has a plan and a purpose for all of this and one day I will understand.  In the meantime, He allows things to happen in my life that I would not ask for.  Through those experiences He walks with me.  He strengthens me, comforts me, teaches me, and is raising me up to be the person He created me to be.  Sometimes it’s really hard and painful, and I can’t see any good coming out of it.  Like Peter though, when I keep my eyes on Jesus, I can walk above the waves.

Father, help me to keep my eyes on Jesus and walk above the storm.  Let me know the Strength of Your Presence in my suffering.  Let me come through this stronger, wiser, and more able to help others who have walked my path.  May You be glorified in all I say and do.  Walk with me through this fiery trial and let me feel that You are here.  In the healing name of Jesus I pray.  Amen!

🙏🏻💕