Dysautonomia added to the list...

Psalm 46:1

New King James Version (NKJV)

46 God is our refuge and strength,

A very present help in trouble.

My life has once again been changed, A LOT. A new word has been added to my vocabulary, Dysautonomia. In particular, POTS, which stands for postural orthostatic tachycardia syndrome. It's when one has dysfunction of the autonomic nervous system which messes with one's ability to maintain a normal blood pressure and heart rate upon standing. In between these episodes, which are a regular part of my day, I have heart palpitations, mild chest discomfort, jittery & shakiness, shortness of breath and just an overall unwell yucky feeling. I have seen my General Practitioner, my MS Neurologist and a Cardiac Electro Physiologist. They all seem to concur that this is my diagnosis. Whether or not it's a stand alone disorder or if it's actually caused by my MS seems to be a bit of a mystery, but regardless, it is treated the same. I'm currently taking some medications to help alleviate the debilitating symptoms. I've started taking a new beta blocker called Metoprolol and also a drug called Midodrine that helps stabilize my blood pressure. It has been a fine balancing act of trying to take these medications in a way that helps relieve some of the relentless 24/7 symptoms that I experience. When the meds start to wear off, I'm at square one. It has been like climbing a mountain daily. This is all on top of my MS symptoms. Only God could get me through my days. The reality of my daily sufferings and continuing to be a wife and mom can be very overwhelming. My abilities are decreasing once again which tends to be par for the course with Multiple Sclerosis. In an effort to draw closer to The Lord, I have been taking a fast from social media. It has been very freeing in that my OCD-like obsession to scroll through the entire newsfeed has been broken. This has freed up my day for more bible reading, book reading, devotion reading, listening to teachings and journaling my prayers. This I feel is more of what I would like to accomplish with my time. God is my refuge and my strength. He is my very present help in my time of trouble. He is the Living God. No different than the Living God we read about in our bibles. He's the same yesterday, today and forever. If I am feeling distress, I cry out to Him. He hears my cries and knows my pain. He comforts me. He reminds me through His Word that this is all temporary and that He loves me and won't ever forsake me. I don't enjoy living with MS and now Dysautonomia, but I can definitely see His fingerprint on my life as I strive to know Him more daily in my walk (which is now closer to a crawl at this point). Who else is going to understand the depth of my pain? No human could ever fill the need I have to be understood completely. He knows my frame. He knows every hair on my head. Nothing comes my way that He doesn't already know about. I can rest in that. It gives me peace in the midst of my trials, which are many....

Love Your Enemies...

Matthew 5:43-46

English Standard Version (ESV)

43 “You have heard that it was said, ‘You shall love your neighbor and hate your enemy.’ 44 But I say to you, Love your enemies and pray for those who persecute you, 45 so that you may be sons of your Father who is in heaven. For he makes his sun rise on the evil and on the good, and sends rain on the just and on the unjust. 46 For if you love those who love you, what reward do you have? Do not even the tax collectors do the same?

Last night Kenny and I had "date night". We haven't really had a date night in quite a while. Our normal Friday night date night routine had turned into Kenny going through the drive-thru at Pollo Tropical because I have felt too unwell to cook or to go out for dinner. My latest ailment (dysautonomia) added to my long list of ailments has been drastic fluctuations in blood pressure and an increased heart rate that have brought me to the point of feeling like a limp wet noodle on the verge of passing out almost daily. The cardiac specialist has adjusted my meds and my body is trying to behave so that I am able to function at least a little bit. 

Well, back to date night. We went out for dinner and afterwards we went for some frozen yogurt. We sat outside to enjoy the cooler temperatures. There were some rowdy, loud, vulgar mouthed young men walking back and forth along where we were sitting. I started getting chilly so Kenny left me momentarily to get my sweater out of the car. While he was gone, the young men walked past me again and were intentionally using extremely vulgar language in what seemed like a plot to get a reaction from me. I kept my thoughts to myself, kept my eyes looking downward and away from them and I ignored them. Inside my head, my mind was racing. I had so many thoughts running through my brain. I actually felt quite vulnerable and was scared they may try to mess with me somehow.  I felt such anger about their behavior and also a deep sadness that these kids were so incredibly disrespectful in the company of the adults around them. My flesh wanted to rise up and tell them what I thought about their vulgar language but I could actually sense the danger if I were to do so. Kenny returned with my sweater and I told him about the vulgarity that he missed while he was gone. We continued to hear their loud rants going on behind us. While leaving and walking to our car, we had to walk past them. One of the kid's yelled out to me, "nice stick!", referring to my cane. I honestly couldn't believe a young man could be that rude, cold and heartless to a middle aged woman like myself. I thank God for my husband's self control because the scene could have gotten ugly. 

This brings me to the verse above. To be honest, I wanted to take "my stick" and knock the kid silly. I actually was struggling with how to respond to him and lifted up a quick prayer for wisdom and self control. I looked at my husband and told him how I literally felt like beating the kid with my cane. As we got in the car and I thought about the entire situation I could tell that I was being put in a position to "love my enemy". My heart began to soften a bit and I actually regretted not doing something "radical" like hugging him. That could have turned out really ugly too. "For if you love those who love you, what reward do you have?". Yes, I needed to do what I did. I exercised self control and I prayed for those young men. I continue today to keep them in prayer along with the entire generation of youth. Not all young people act or behave this way obviously, but for the ones that do, I pray for them. I'm grateful that no one decided to play the "knock out game" with us and I'm also thankful that my husband and I know Jesus. I pray those young men will meet Him too before He comes back as Judge....He is definitely returning! 

Revelation 3:11

English Standard Version (ESV)

11 I am coming soon. Hold fast what you have, so that no one may seize your crown.

Free Pastor Saeed

Hebrews 13:3

New King James Version (NKJV)

3 Remember the prisoners as if chained with them—those who are mistreated—since you yourselves are in the body also.

I haven't blogged in a while but when I heard about an event that is spreading like wildfire through our social media outlets, I knew that even I could be used as a tool to help spread the word about Pastor Saeed Abedini, an American Pastor who has been imprisoned in Iran soley for being a Christian for well over a year now.  Just one person can make a difference and this is my attempt to do so. Even one prayer lifted up in faith to our Great and Mighty God is powerful. Just think about the power of countless prayers lifted up in faith by many of His saints! 

The story of Pastor Saeed has opened my eyes to the growing rate of persecution of the church and the body of Christ both here at home and across the world.  I have tried to envision myself in the position of Naghmeh Abedini, Pastor Saeed's wife and I wonder what I would do if it were me in her situation. Her husband left the comforts of their home here in the United States to go and start an orphanage in his homeland, Iran and ended up being arrested and thrown into the notorious Evin Prison with an 8 year sentence simply because of his Christian faith. He has been imprisoned for over a year now and has suffered severe physical and mental abuse at the hands of his captors. He has recently been transferred to Rajaei Shahr, an even deadlier prison, where he is surrounded by extremely dangerous inmates that are mostly made up of rapists and murderers. His overall health is continuing to decline rapidly. 

Naghmeh lives in Idaho with their two young children. When I think about her, I often wonder what I would do if I were in her situation. Who would I turn to? Who would care? Who would help? After my initial shock, I would be pleading and praying to God for my husband's release, I would be going to my church family, all of my friends and acquaintances, and maybe even the national television networks to get my story told. I would fight and do whatever it takes to get my husband back home safely. These are just a few of the many things that Naghmeh has been doing. 

Now is our chance to help. Today is an opportunity for all of our voices to be heard. We long to see Pastor Saeed set free as well as any other Americans who are being detained and imprisoned based soley on their faith alone. We trust in God's sovereignty yet we know that we can be used by God and our prayers are powerful.

If you would, please take time today to pray for Pastor Saeed, his wife Naghmeh and their two children as well as all of our persecuted brothers and sisters in Christ. Our prayer today is to flood social media with Pastor Saeed's story and to bring to light the injustice of this horrific situation.  If you feel led to help get the word out, please use the following hashtags  #savesaeed & #freesaeed on Facebook, Twitter, Instagram and any other social media outlet that you use today and any day going forward. Also pray that the President of the United States of America and the entire Administration would work diligently to bring Pastor Saeed and all other Americans being detained and imprisoned soley for their religious beliefs home. 

Thank you for reading this and I am looking forward to seeing our prayers answered according to God's perfect will. 

Hebrews 4:16

New King James Version (NKJV)

16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.

My Stream in the Desert

Isaiah 43:18-19

New King James Version (NKJV)

18 “Do not remember the former things,

Nor consider the things of old.

19 Behold, I will do a new thing,

Now it shall spring forth;

Shall you not know it?

I will even make a road in the wilderness

And rivers in the desert.

This verse is speaking volumes to me today. I am in a desert. It may be a temporary relapse but I certainly feel parched in this dry land I am in. I am hurting, in physical pain and discomfort. I want to look back and remember feeling well but I know that I must keep moving forward. As I lay in bed and feel like my legs are heavy weights with magnets, it feels like a huge magnet is underneath my bed pulling and keeping me down. I fear that this disease is catching up with me and every day lately I wonder, will this be the last day that I walk? Not a far fetched question to ponder when you have lived with Multiple Sclerosis for over 11 years and little by little your brain and spinal cord are being eaten away at. When the wrong words come out of my mouth and I have to ask, "did I say that?", when I forget what I'm thinking in the middle of thinking, or forget what I'm saying in the middle of saying something, when my hands randomly drop something and it crashes to the floor, when I can't manage to move at all without increasing my dizziness, when my arms are tingling from folding warm laundry, when my back just aches and my strength is declining... I can't help but think that satan has asked whether he can sift me like wheat. I desire to cling to my Savior and remember the cross. He understands every single little twinge of pain and the deep feelings of being isolated. There isn't a single thing that my Lord doesn't understand about my personal situation. I am isolated in that many of my friends with MS cannot comprehend being dizzy 24/7. My dizzy friends with vestibular disorders can't comprehend having all of the MS symptoms on top of the dizziness. I call it my "combination platter". If I allow myself to feel like I have things worse than anyone one else, it puts me in a place where I could become bitter. May that never be. I turn to my Savior and ask Him to let His grace be sufficient for me this day. Let His empty tomb be a reminder that this will end well in due time. A new thing is happening. I don't know all the details but I trust what He has said to me today through His Word. He will make a road through my wilderness and a river or stream through my desert...God is good, all the time. 

In the cleft of the rock...

Exodus 33:22

New King James Version (NKJV)

22 So it shall be, while My glory passes by, that I will put you in the cleft of the rock, and will cover you with My hand while I pass by.

This is one of my favorite verses. I'm not sure why but I just love to picture this scene. Sometimes I feel like God has placed me in the cleft of the rock. I am hidden and isolated as the world goes by and the people around me are participating in everyday life. I am on the sideline, yet I have joy knowing that I am exactly where God wants me to be. He blesses me with just enough glimpses of His glory to confirm that I am where He wants me and in His will. I haven't blogged in quite a while and honestly, I haven't had the desire to. The past few days I have been flooded in my spirit with joy. I still feel physically awful and weak but my spirit is soaring for some strange reason. After saying goodbye to one of our friends who moved home to heaven, the sadness was overwhelming yet it has caused more anticipation about my final destination. To be present with The Lord! 

I saw a post on Facebook yesterday that said, "don't miss your ministry because of your misery". Something just clicked. Not that I didn't already know that The Lord would use my Multiple Sclerosis to minister to others, but my eyes were opened to something new. I realized that I have tried to work around my MS and even minimize it. It has taken over too much space in my central nervous system to hide or ignore anymore. It is taking over my physical body but, there are some things that MS cannot steal from me. It cannot steal my salvation, my hope, my eternal home. Things are going south in many ways healthwise but I will be making a complete u-turn when God calls me home. This life is not the end. The end we experience here, also known as death, will be the doorway to eternity. Heaven or hell forever. Praise God for sending Jesus to die for us...a sinful people. Placing your trust in Him for salvation, repenting of your sin and yielding to His Holy Spirit can save you from eternal damnation.  Although my circumstances are not great and I can be pretty sure that my health will continue to decline based upon the nature of the beast, I am still able to live with the confident hope of ridding myself of this "tent" and being free from sin, disease and death! What a splendid time it will be! Praise be to God!

2 Corinthians 5:1-5

New King James Version

5 For we know that if our earthly house,this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven,3 if indeed, having been clothed, we shall not be found naked. 4 For we who are inthis tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. 5 Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee.

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...