The days are challenging, yet His grace IS sufficient...

2 Corinthians 12:9

New King James Version (NKJV)

9 And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

I'm not going to candy coat this entry because I have a habit of doing that exact thing. I tend to sugar coat this awful disease at times because of the strong focus I have on my eternal future in heaven and I also don't want to come across as a whiner or complainer. I certainly am aware that there are other people with greater struggles than mine that I do not want to minimize in any way whatsoever. 

I am beginning to realize that I don't allow myself to express how I feel about the way Multiple Sclerosis is affecting my body and in turn, my life. The problem with that may be that I am setting myself up for a state of "existing" as opposed to actually "living". There is an old saying that goes... “Don't be so heavenly minded that you are of no earthly good". 

I don't want to post a blog of moaning or complaining because honestly, who wants to read that? I will say though, that Multiple Sclerosis is a devastating disease on so many levels because of the endless symptoms and because there quite often are no body parts that are spared from it's path of destruction. Your brain and spinal cord control your entire body. Permanent damage to areas of your brain is actually considered "brain damage". That can be a hard pill to swallow. Some of my symptoms have been around since I first started having them over 12 years ago. They have just become part of my new norm over the years. I keep picking up new symptoms along my path almost daily that become additions to the pain and discomfort of living with MS. The worst of all symptoms is by far the dreaded vertigo. It is no longer just a fast spin that awakes me from a deep sleep. Now I also get a slow motion partial spin while upright and the sensation that I'm falling in a pit or being sucked down a drain every time I lay down. 

I mentioned on Facebook fairly recently about a "meltdown" that I recently experienced at our MS bible group. It was an evening surrounded with some of our closest friends that also have MS. One of my friends had me re-read something that I had shared with her during a recent phone conversation that was from a post that I had read on Facebook. The question that was posed on Facebook to the MS community was something to the effect of, "how do you describe what MS is to people in just a few minutes?". I had half jokingly responded by saying that I find it easier to tell people to just "Google it". But one gentleman's response was jaw dropping to me. What was so weird about his response was how it struck me to the core of my being. He described how he would have the person literally step into his body. He talked about how the person's initial reaction would be complete shock. The next reaction would be the person screaming, cursing and crying. Lastly, the person would be on their knees begging for him to take his disease back. I found that so compelling. My friend had me read this to our group and as I did, the well of emotion came pouring out of me by way of tears spilling down my face. I honestly wanted to just sob but I still felt like I had to exercise control over my emotions. I have quite often mentioned to my husband, Kenny and my daughter, Amanda that I would just like someone to actually experience my body for a few minutes. I just feel like it would be an eye opener. I know that other people must experience this desire to be completely understood by their loved ones. 

That night was life changing for me and for all of my friends who witnessed my "cathartic moment". It made everyone realize that although we have the hope of our eternal destiny with The Lord, we are still fragile, hurting and unwell people who need to get through our long days moment by moment. One of my friends there that evening said, "but you're always smiling!". I realized that through my pain and discomfort The Lord still blesses me with the ability to smile a genuine smile. I see that as a gift from God.  Another thing that I do want to stress is that, just because your unwell loved one is smiling, it doesn't necessarily mean that they are feeling great or even good at all. I truly believe that God gives me all that I need in every moment of my life with Him. His grace IS sufficient for each and every moment of my life. The truth is that it doesn't always feel like it is, but I hold on to the biblical truth that it IS sufficient for me and it always will be. 

Today my hands feel like my feet. They are becoming more numb (feels like bubble wrap is wrapped around them) and my dexterity is declining. Just another symptom that I may or may not have to endure for the rest of my life. How do I live like this? I do not have a choice, but I do have the ability to choose how I will respond to my difficulties. I don't always respond well, but when I do, it usually involves prayer, bible reading, devotions and lots of love from my God, my family and my friends. As time goes by, I am realizing that I need to share sometimes with the people closest to me what is going on inside my body and the thoughts that coincide. I don't expect answers or even a reaction. I just need someone to really listen sometimes because this is getting harder day by day...

Lisa

Proverbs 18:24a

New King James Version (NKJV)

24 A man who has friends must himself be friendly,[a]

I have a friend. Her name is Lisa. She was literally my very first BFF. When my family moved into the home in which my parents still reside, I didn't have a real friend in the world. Lisa and her family lived a few houses down. Honestly, I can't even remember our first meeting. I'm sure she does though. She has the best memory of anyone I've ever met. As soon as we met, we became instant friends. We were the same age and in the same grade in school which was middle school at the time. We lived through our "80's feathered back hair" days and our "jeans are so tight we have to lay down on a bed to zip them up" days. We also had our "cowboy hat" days and our "hang out at the bowling alley" days. Who could forget our "doing sign language across the hall in school" days and the "sunburn our faces and Sun-In our hair" days.  The list goes on and on. Some of the list I would rather forget, but the bottom line is that I wouldn't trade my memories with Lisa for anything. 

Lisa was born with completely normal hearing. A complication at birth caused damage to her inner ears causing severe hearing impairment and the need to wear a hearing aide. I always looked up to my friend who NEVER let her hearing loss stop her from being who she was or doing anything she desired to do. 

Fast forward to today. I have MS and my most debilitating symptoms are vestibular in nature. Lisa is watching me deal with my own physical ailments now and we both share something amazing in common... A friendship that has stood the test of time. We have experienced so many trials in our lives but nothing has ever stopped Lisa from keeping our small tight knit group of childhood friends together. She is most certainly the glue that keeps us all together. 

I so appreciate all of the many friendships that I have made over the years but there will always be a special place in my heart for who I still affectionately call Lisa Nockowitz (although she has been Lisa Hutcherson for 25 years now). I love you my friend... 

Delayed Gratification

Romans 8:18

New King James Version (NKJV)

18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

The words "delayed gratification" have been swirling around in my head a lot lately. I have SO much to look forward to, eternal life ahead of me! Sometimes I feel as if my life here on earth is closing in on me. I have become more immobile, a bit isolated and quite uncomfortable most of my days because of Multiple Sclerosis. If I allow myself to dwell on my discomfort, it overwhelms me. I begin to consider my age and how many years I could potentially have to suffer through life with this dreadful disease and it's ravaging effects. I've already endured MS for over 11 years. That's a long time to "not feel well". Just some honest thoughts... 

When I look around me, I see many different scenarios. I see friends hanging on to dear life while fighting terminal illnesses, I see people biding their time until they can see their departed loved ones again, I see friends struggling in their marriages, finances and a multitude of other major life trials. Then I think about our future. My future and the future of my brothers and sisters that have placed their trust and their very lives in our Savior, Jesus. We have Him to look forward to! It's just a matter of time until we see Him face to face. Our day of death will certainly arrive and until then, we need to occupy our time here as He has instructed us. It's a win win situation. We can't lose if we remain in His will. If we go through difficult times or even times that seem completely unbearable, He is not only aware of our circumstances, He is with us through them. He never leaves or forsakes us! We need to hang on to Him for dear life because HE IS OUR LIFE. I think that "delaying gratification" may be a psychological term but it is applicable to what we need to do here on earth. Our rewards are to come and all we need to do is be obedient to what He calls us to do. Writing this blog today was what He asked me to do. So here it is. Will you listen to His voice today? He will never put us to shame...

Romans 10:11

New King James Version (NKJV)

11 For the Scripture says, “Whoever believes on Him will not be put to shame.”

Longsuffering in marriage...

1 Corinthians 13:4

New King James Version (NKJV)

4 Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up;

Kenny actually bought me this Precious Moments "I love you" figurine before we were married. I LOVED it!!! My heart leapt for joy when I received it as a gift. This weekend he told me that he loves me, but it sounded different than what I am used to hearing. It sounded heartfelt and less "routine". I'm not accusing my wonderful husband of not saying " I love you" properly but as we all know, after many years of saying those words to each other, it may begin to sound or even feel routine. 

Saturday I woke up and wanted to get out of the house. Since I'm not driving, I needed Kenny to drive us to Publix to get food for the week. When we got in the car, he asked where we were going. I said, "I guess to Publix".  I think he had something a little more exciting in mind other than going to the grocery store but he yielded to what we "needed" to get done instead of what would have been more enjoyable (like a trip to Jaxson's for lunch and ice cream). When I saw a glimpse of disappointment on his face, it stirred up emotions in me of feeling helpless...

Two years ago I was working, driving, going grocery shopping, serving at church, getting my hair & nails done, and just bopping around living my life. Things are very different now. Kenny could see the wheels spinning in my head by the look on my face. He immediately tried to make peace and reel me back in. He understood my frustration. By nature he is patient and a peacemaker. Sometimes we both need to vent a little. This life with MS can really stink terribly. Yes, my moods waver with what I'm feeling physically, but honestly my faith isn't shaken. I just long for a healed body and I'm like a kid waiting to go to Disney World as I anticipate heaven. It WILL happen one day but until then, we are only required to live one day at a time. Sunday we discussed our feelings from the day before. They were real. We didn't sweep them under the rug so they could jump out at some inopportune time creating unnecessary bitterness or useless bickering. A little insight into my husband's feelings and hearing him say "I love you" took on so much more meaning after listening to what was on his heart.  He reassured me that he's in this marriage for the long haul. Its exactly what I needed to hear and be reminded of. That is love...this is longsuffering...

Was it worth it?

Psalm 18:6

New King James Version (NKJV)

6 In my distress I called upon the Lord,

And cried out to my God;

He heard my voice from His temple,

And my cry came before Him, even to His ears.

The past two days have been rough. As some of you know from Facebook, Kenny and I went to the beach on Saturday. We stayed for only an hour. It felt so good to be sitting there in a beach chair on the sand and looking out at the ocean. Breathing in fresh ocean air was exhilarating.  I honestly don't remember the last time we actually went to the beach. We have gone and sat on a bench, but we hadn't actually gone to the beach for quite some time. After only one hour, my body knew it was time to leave. The rest of the day we spent together enjoying each other's company. We went to the grocery store, Starbucks for some coffee and came home and swam in our pool. It was a very full day for me.  The following morning (Sunday) I got in our pool again and moved around on a "noodle" that Kenny picked up for me at the pool store. I had two active days in a row! 

Then came Monday and Tuesday.... I was literally in bed ALL day, both days, barely able to move or function.  I'm not sure about when I last felt so completely drained like that. There are no words to describe that type of painful fatigue. I woke up exhausted and that heavy lead feeling never left me. I was pleading for God to lift it from me.  Over the years, I have been blessed with fairly decent energy for someone with MS. The past few days though, I was unable to do anything. Taking a shower landed me in bed. Even thinking was difficult. I had a taste of the debilitating MS fatigue that so many people suffer through daily. I have to admit, it was frightening. If I were to continue on that track, I would basically be bedridden...

Today is a new day though. I'm glad that I listened to my body and slept all day long for two days straight. It has paid off. Although I am still quite fatigued, I am feeling more energy today. I was texting a friend of mine yesterday who also has health issues, and I asked her if she thought that "going for it" when you're feeling well is worth it or would it have been better to skip the busy beach day? She thought that a day of enjoyment was well worth the harsh consequences. I suppose I agree somewhat, but I'm not sure that I'll be going to the beach again any time soon. Well, I don't think so anyway....

Who are you?

1 Corinthians 12:18

New King James Version (NKJV)

18 But now God has set the members, each one of them, in the body just as He pleased.

Yesterday, while having a talk with my daughter Amanda, I mentioned to her that it doesn't matter to me "what you become" but "who you become". What one does to earn a living does not define who they are. Belonging to The Lord Jesus Christ is the ONLY thing that truly matters. Such a complex yet simple truth. This life can literally strip us of all our worldly goods, loved ones, health....if that were to happen to you, would you know who you are in Christ? Could you see beyond being stripped of all your earthly possessions?

It's been two years since I left the working world. I don't look back. I can't say that it wasn't difficult to part with my licenses that I worked hard to get, but I CAN say that I press forward on to my upward call in Christ from my couch. God in His amazing ways is able to use any of us no matter where we are physically or what our circumstances look like. No matter how bleak things may appear, I still have my place in His kingdom and in the body of believers. 

I've been unable to serve physically in church for a while now, but that doesn't mean I have stopped serving God. He has strategically placed me exactly where He wants me. My life is not just a random "series of unfortunate events". 

I continue to pray to be in God's will, I can trust that I am exactly where He would have me. Some may look on and feel pity for me, but don't. Things may look bad on the outside at times and things may continue to worsen in appearance, but I believe every word of the bible and I know that I have a grand future ahead of me. Anyone who has placed their complete trust in Jesus for their salvation can say the same. If you haven't done that yet, He is just a prayer away. Ask Him today to cleanse you of all iniquity and He is faithful and just to do so. Resting in Him is peace and joy, even in the midst of terrible adversity... 

1 John 1:9

New King James Version (NKJV)

9 If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.

Always making adjustments...

Matthew 6:34

New King James Version (NKJV)

³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.

As my days go by and my MS progresses, there are times when my only goal for the day is a shower. I do have some more constructive days where I actually accomplish some tasks (chores, crafts, cooking...). I have been taking naps almost every day lately and I am allowing myself to do so without listening to "the voices in my head" that tell me that I'm being lazy. Since God created me, I will always have my very own place in this world regardless of what this nasty disease called MS does to me.  No one else can be me. (I don't think anyone would want to be anyway, lol). I know that I often put pressure on myself to do more and sometimes that is a good thing, but sometimes my limitations need to be dealt with by resting. I am getting better at listening to the needs of my body. I have learned that it's ok to say no sometimes. Quite often I will find myself, like many of you do, where I am being pulled from every direction to do this or to do that. I am learning to do what I need to do in this unpredictable life with MS and that is "to just roll with it". If I am able to do whatever it is, great! If not, I will move forward and not look back. Being that I never have symptom free days anymore, like I did early on in my disease course, I have to adjust my daily routine as needed. If my hair goes unwashed an extra day, well so be it. A chronic disease can teach one a lot about what is important and what is not. I do what I am able to do when I can and I take the time to rest when I'm unable to do certain things. My favorite saying lately is, "it is what it is". That is true. No matter what my future holds, God is unchanging. Focusing on the "what ifs" have never been productive for me or anyone else that I know. More often than not, they don't happen. Crossing each bridge as I get to it is a much better plan. Today I polished my fingernails blue. I had Amanda pick a color for me. It would have never been my choice but hey, I'm mixing it up a bit today! Live for today and in each moment.   Enjoy every detail of your life. For in the blink of an eye, our life as we know it could change in a very unexpected way...we need to love each other passionately and extend grace to each other as well. Isn't that what Christ has done for us?