Alicia Reagan

I am going to merge my YouTube channel and this blog and “marry” them a little!

When I make a new YouTube, I am going to throw it over here as a Vlog (video blog). I think it will be helpful to mingle them together. The more others can be helped in their disability journey, the happier I am to share what I have learned and want to help others with.

YouTube has been a huge resource to help me learn new skills, and their is such a great community there. Blogging has been a huge outlet for me in my own personal healing journey. Writing is therapeutic and I have never cared if anyone even read. I just needed to write.

Over the years though, people do read. And I have loved to help educate and teach things in my life that I have been so honored and humbled to learn.

I took the kids Christmas shopping and we were out all day and ALL of us were tired. This Mama was beat though. It was a great time for a “Tired Transfer” video for YouTube. So here is to our first Vlog over here!

The other day, one of the kids mentioned me being paralyzed from my belly button down. I said, “What?!!! What are you talking about? I have never been paralyzed from belly button down! I can’t feel anything from my chest down and spotty feelings in my arms/hands! Where did you get that?!”

They said, “Mom, you have always told us belly button down.” I was so confused. My youngest son said, “No, you always said chest down.” So my oldest daughter got called. She said, “You used to say belly button down but the last few years you say chest down.”

As you can imagine, I could not understand this confusion! I wondered how my own family could be so confused!!! I started to chalk it up to being little and not understanding but too many were saying this.

Then it hit me! I knew EXACTLY what it was! It is the difference between damage levels, sensation levels and motor function levels. And yes…they can ALL be different, and they can change!

This morning, on a Facebook page, a lady posted wondering if there was anyone out there like her who was a C6/C7 incomplete quad, but functioned like a T10 complete. I grinned. “Yeah, sweetie. I gotcha. And it is confusing isn’t it? Just ask my kids!!”

Since that is in my mind after answering her, I thought I should share it over here.

Damage Level:

This is the level your spinal cord was damaged. Literally. My spinal cord was damaged from a virus that attacked it and caused swelling that killed those nerve connections and paralyzed me. My level of damage was the fifth through the seventh cervical vertebrae, hence the C5-C7 incomplete quadriplegia diagnosis.

Sensation Level:

This is test of what you can actually feel or not. They will test light touch vs deep pressure (cotton swab over different areas and mashing your toe very hard). They will test if you can feel vibration or not and at what level if so (they gong this metal thing and hold it to certain bones like your ankle bone and you tell them if you feel it and tell them when you stop feeling it if you do). They will test if you can distinguish hot vs cold (again with a metal thing.) They will test if your eyes are closed, can you tell where your leg is (Down? Up? Bent?) in space. They will test if you can feel pinpricks (they poke you with a little needle and you have to tell them if it feels sharp, dull or if you even know they pricked you at all).

From day one for me, my sensation levels have never changed:

• I can feel some deep pressure if it is extreme. I can’t feel someone sitting on my lap, but I would feel deep pressure if you jumped on my feet.
• I feel no temperature or pin prick or light touch from the top of my chest down in the front, and a tiny bit lower in the back (about my bra strap).
• I feel no light touch or pin prick on the outside of my entire right arm, but I can on the inside. I can feel hot or cold on my arms and hands, but it is very unusual and changes. Sometimes, lukewarm water feels extremely hot or extremely cold (like boiling vs iced), but it is just the sink normal water. Sometimes, I can’t really feel a temperature at all. I can feel it is wet, but it feels more like a buzzing than a temperature. It is very weird, but I am used to it. There have been many times I was holding something and the kids insist I put it down because it is too hot but I don’t know it it. It doesn’t feel hot to me. Just slightly warm. On the other hand, I cannot stand to touch anything cold. It is horrifically painful for my hands to touch cold things. Like electrocution painful. I cannot drive and touch a cold steering wheel without gloves or my sleeves over my hands. So my hands are very odd with sensation and always have been. Other than my hands which are equal, I can feel light touch on my left arm, but I cannot feel the pinprick as sharp. It just feels dull, but I do feel it. In conclusion, if this section, my arms and hands are the hardest to describe because I do not have loss of all feeling, and I do not have full feeling. I have feeling but very different.
• I can feel strong vibration all over, when the gong first starts but it stops quickly.
• If you were to have me close my eyes and you moved my legs around, I cannot tell you where they are, but I can tell you have moved them. I can’t feel you touching them, but I would know if they were majorly repositioned. (Maybe the leg bone IS connected to the neck bone!) It is very weird. I can tell when I am extremely uncomfortable and need repositioned, but I would have no clue what position I am in until I look.

Those are my “sensations are pretty consistent with a C5-C7 injury. Being an incomplete is what makes my “description” unique and totally different than another person with a C5-C7 incomplete injury. We get very “snowflakish” in our individual sensations and functions.

Motor Function:

This is what has changed for me over time. From the initial paralysis day…

• My left side is weaker than my right side. I always fell to the left.
• My triceps have always been weaker than my biceps. I couldn’t transfer myself.
• My core…my ab muscles…were very weak. I couldn’t sit up or roll over or move by myself.
• My fingers, hands and arms moved and worked but responded slow…like a slow motion movie. But they moved! The response time from my brain to my upper body was much slower.
• From my lower abs (a little higher than belly button) down, nothing worked.

In therapy, they work hard to teach you to compensate weak muscles with stronger ones and they work hard to try to get some signals back to your body through intense repetition and targeting muscles.

In therapy:

• My arms go stronger. My triceps stayed weaker, but my biceps got stronger. My shoulders got stronger.
• My upper abs got a little stronger and I learned to sit up, roll over, and transfer alone.
• I could move my big toe on a good day, and my quads would fire when the therapist poked them and would ask me to engage them. I’m still not sure if I did that or if he was triggering a spasm with the taps, but either way, it was movement. I never gained enough quad strength to lock my knees but I could see the muscle fire when he tapped.
• I learned how to compensate with muscles that were getting signal and “cheat” with my body to make it function. I learned to throw my shoulder hard when I need extra arm strength. I learned how to position my weaker muscles in ways to help them…like turning my arm to lock my elbow in place for transferring or sitting up instead of depending on my tricep to lock it in place

Over the years, I have learned that every neurologist is different in how they classify or diagnose you. I have seen multiple neurologists over the last 11 years and they all say different things. My very first neuro diagnosed based on your lowest level of function. So, he diagnosed me as a T10 paraplegic because I could move my toe some. This was before they could even do an MRI, I was still pregnant and not able to lay on my back without passing out cold. Honestly, looking back and all I know now, I don’t know how this guy qualified as a neurologist. He was horrible and I hated him from the get go. That is strong but it is true. I feel he dropped the ball in so many ways. He is also the one that wanted my baby doctor to deliver my baby at 20 weeks. What a moron.

The next team of neurologists at Cleveland Clinic saw the damage at the C5-C7 level and only talked about the diagnostic levels. Their job was to figure out what caused this. They were very kind and compassionate and felt a virus had attacked my spinal cord. They said there was no way to know what virus unless they took a biopsy of it, but they didn’t do that on people who were alive. But they never gave me a “diagnosis”. Instead, they ruled out the hundreds of other things it could have been through 8 days of intense tests and procedures. They are the ones that set me up with long-term (a year) physical and occupational therapy where I did my rehab which was vital but had been non-existent so far. I was paralyzed in March. I didn’t have any therapy until November. Again, that original neurologist absolutely dropped the ball on my care.

My physical therapist was the first one to talk to me about the differences in diagnostic vs sensation vs function. His job was to take current function and try to get a better result. I learned more from him about the movement (or lack of) of my body and how to live in it than anyone else up to that point.

My next neurologist (a neuroimmunologist) taught me about all the secondary issues and to understand all the strange complications of a spinal cord injury. It was also through him and new MRI’s and his specialty practice that I finally had a name to what had happened to me…Idiopathic Transverse Myelitis…which is a fancy description that says “something unknown (idiopathic), has caused inflammation (myelitis) across the entire segment of your spinal cord (transverse)”. That unknown inflammation that they believe was caused by the pink eye virus I had two days before, extended from my C5-C7 spinal cord segments in my neck and paralyzed me. I am an “incomplete” because I have some function and some sensation in the areas that are affected. If I was a complete injury, I would have no sensation or function below those spinal cord control areas (which is basically shoulders down at the C5 level). This neurologist helped me in so many “hidden ways” that went way beyond walking or not.

My next neurologist did a new assessment about 6 years ago when I moved to SC. He was actually a spinal cord injury doctor and dealt exclusively with those like me instead of handling all neurology (like seizures or Parkinson’s or even migraines). He did the most comprehensive testing I had ever had done on me. Because my upper body functioned so well as to the parts you could see (for example, you can’t see the weird sensations my arms and hands have always felt) most of my neurologist would test only my lower body for sensation, movement, etc. However, this doctor started with my face and moved down. It was the day that absolutely startled myself because I had learned to compensate so well and cheat with my upper body, that when he isolated my muscles and tested them individually, I was shocked at how weak certain muscles were. For example, I could not keep him from pushing my fingers together. I couldn’t lift my arms against any pressure from him at all. I was diagnosed clearly that day as a C5-C7 incomplete quadriplegic and I believe that is the first day I was shocked to realize how affected my upper body truly was. It was also the first time I had been called a quadriplegic so clearly…and the first time it actually hit me how affected my upper body was. I remember crying as he tested me. It was a real eye opener.

About 2 years ago, I started getting progressively and dramatically (to me at least) weaker in my upper body.

• My weaker upper abs that I had depended on, where totally gone. I had nothing and I greatly struggled to sit up or roll over alone any longer (like those early days!)
• My arm strength just disappeared little by little. I kept trying to lift weight like I had loved to do, but I literally couldn’t. I was lifting about 50 lbs from my lap and now I could barely lift 10!
• My left arm/wrist/hand was so weak I struggled to hold a coffee cup. My right hand was weaker too although it is consistently stronger than my left.
• My hands were waking up clenched tightly and so stiff it takes me hours to limber them and I have to work on th all day stretching them to keep them from curling in. They are weak that I cannot fight the stiffness. If I can keep them limber, I have enough strength to move them independently, so I keep them stretched all day long.
• The fine motor skills in my fingers are completely gone some days and tap out pretty quickly on good days. I can’t play the guitar anymore at all on bad hand days and on the good days, I can get a couple songs out and then I can’t get my fingers to obey anymore. The piano is easier for my left hand because it doesn’t take as much movement for my fingers. I can just push the keys down and can cheat through some of that also with just the base note. I make myself play both instruments though as my own therapy for my hands.
• My shoulders were so much weaker I couldn’t compensate to push myself over anything that wasn’t completely level and smooth.

Off to the neurologist again. He ran many more tests to make sure nothing new was going on and sent me to therapy to get stronger. After many months in therapy again, zero strength returned and this is now my new normal. The therapist and doctors all agree that I overused my weaker upper body muscles for all those years and those weakened upper body nerves had neuronal burnout…I literally used them to death. Can anyone say overachiever? 🙂

Doing therapy again, did help in two ways. First of all, they were able to teach me new skills that depended less on strength and more on form and momentum. It has been helpful to think through new scenarios and now think “how can I power my way through this” and instead think “how can I navigate through this.” Secondly, my spasms started towards the end of my first time in therapy (about a year out) which often happens with some nerve return. That return gets returned with a wonderful gift called spasms. Nerves are trying to fire but they lack any control. The second round of therapy that I went through a couple years ago taught me how to use those spasms and spasticity to my advantage. This is still a learning game to me because spasms truly can be unpredictable but I have learned how to trigger a spasm to help me if I need to. That has been a big help!

I was sent to a new seating clinic and needed a new seating system so I could sit upright in my manual chair. Without it, it took so much energy to literally just try to sit up in my wheelchair that I was miserable every day. They new seating system helped so much although I am still not able to sit longer than about 6 hours in my manual chair without getting a bad headache from the strain of holding my neck up to balance my entire upper body. They also told me that I had to start using a power chair. This was a big blow to me but I had dear friends who helped me get over my pride. I have no clue what stigma I had placed on myself but it was there! Now it is totally gone and I don’t care!

I do use my manual chair daily in my home but use my power more and more as my arms and hands have weakened. The trade off is less exercise, but also less pain and fatigue and more independent function in my power. I cling to my independence and if a power chair helps with maintaining that for longer years, then so be it!

So, as you can see, diagnosis level is the same. Sensation level is the same. But function level has changed over the years. I always say that my “incompleteness has just become less incomplete.” I am thankful for any function I have!

The spinal cord is extremely complicated and so an injury to it will also be complicated. It is confusing to neurology at times, has been very confusing to me, and it is no wonder my kids have also been confused!

I think the take-away for all of us is that changes do occur. Get everything checked out! But just know, many times change is the nature of the SCI injury beast and changes can happen for better or for worse, but it is not unusual for changes to happen over the years.

As for me, I am much more vigilant now to know the level of my injury and the decline that could continue to happen. I need to take good care of this body and budget the abilities I do or do not have so that I can have long-term independence.

May I take you on a journey? Will you just give me a couple minutes of your time and follow me to the place a decision was made that has never once stopped affecting the course of time.

Come with me. I challenge you this journey is only for the true and brave.

This journey begins with our most current debate last night and the plethora of opinions on both sides of the fence. I have both liberal and conservative friends and I assure you that both sides equally throw around the name of God defining what He wants. When my God gets quoted and credited by everyone for what He wants (which of course always matches their narrative), it is time for some Fact Checking.

Let’s journey back in time. We will pass by every President before us. Do the issues change very much? Taxes, military (to war or not to war), rich vs. poor, the current cultural dramas at hand (currently COVID-19) and ultimately, who has the power and responsibility to solve these issues…the government or the people. Every President in our history of the United States has dealt with these same issues. The details vary, but the basis is the same.

As we journey past these Presidents, we journey on past our first President George Washington, past the signers of our Constitution and to the original shores where the Pilgrims and Puritans landed, but we will not stop there. We will wind back through Europe and Martin Luther the Reformation. We pass the stakes where men like John Wycliffe were burned to death for getting a copy of the Bible into the hands of the common man…to stop the religious abuse that was coming from institutional religion and its death grip over man.

We keep journeying and see the roar of the Roman government and their order. Let’s stop for a gruesome moment and watch the Coliseum games. Today’s game headline is “Christian vs. Lion…Who Will Win? Get your ticket now!”

We have arrived in the market place of Athens. It is a busy city! So much life. The markets are full of trade. We meander over to Mars Hill… “the happening spot” of human philosophy where all the great minds come together to figure out the complexities and meaning of life. We stop as we hear the voice of one, just one man who is proclaiming to these thinkers, that he noticed in the market they were selling idols to the “unknown God” and that is what He is there to discuss that day. To introduce them to their unknown God.

Now we journey a little farther and we are on a Judean hillside. We see a man named Jesus. Here we tarry for awhile. He intrigues us because we have taken quite a journey now and are tired. Weary. We have witnessed a lot of historical trauma.

We have already seen several horrific wars and such great loss of life…even if it was necessary…in our own nations very short life span. So much hate and division since we started.

We have witnessed institutional religion and crusades that terrorized the common man…all in the name of God and holiness.

We have witnessed the strict regime of law and order and superiority when we saw those that disagreed fed to lions.

We have witnessed the great minds of the time and their confusion seeking to understand life and an unknown God they knew nothing about.

And so here we are. Tired. Burnt out. Quite helpless. And He speaks.

His words are quite revolutionary. He speaks OF power and authority, He speaks WITH power and authority, He calls for us to follow Him, yet He has handed us nothing tangible to partake of in this thirst for power that we all suffer from. He tells us to believe and learn and trust Him. He invites us to a bigger picture that includes His Father and how they are one and we can be with them in a different kind of existence and life.

We continue to follow Him over the countryside, witnessing Him healing yet asking them not to tell. We witness the religious leaders twisting His words, falsely accusing him of being filled with Satan, yet He will not argue. We see the political powers try to twist His words and play the “smile to your face and stab you in the back” routine, yet he avoids that conflict. He just continues His mission which He says is His Father’s will.

We follow Him into a garden and watch his humanity and heartbreak pour out in great drops of blood and His earth-shattering suffering has already begun. Yet even then, He wanted His Father’s will.

The powers that be come and arrest Him as He was betrayed by one who called himself, Judas, a follower of Jesus. Big money corrupts again.

He now stands before Pilate…the Law heavy Roman who would pronounce life or death. His accusation? Pilate said, “You say you are a King?”

Why is this bothering the Romans…and the religious Jews so bad? The Jews don’t even like the Romans so why are they collaborating against this man and why are they so threatened He is claiming to be a King?

Jesus answers and it all suddenly becomes clear! His mission, His claim, where He is leading us and what domain does He rule and invite all of His followers to live in? You must read the court records for yourself.

Court clerk, can you please read us that answer again? We will get to that, but first, let’s go on.

That question about a King sends us farther back into our journey into a Judean hillside. We traveled past many wars, death, divided kingdoms, conspiracies, revolts and uprisings, and we keep traveling the line of legacy to where this “King” stuff began.

We see an old man. With stooped shoulders, weary from years of faithful service, it has been time to hand this heritage over to his children but they aren’t serious about God. They are playing the game, filling the “spiritual position” and are hypocrites. The people, disgusted by their life of lies, and constantly bent on doing things their own way instead of Gods, demand for this system of “God leading us through prophets” end. They don’t want it anymore. What they need…above all else…is a King. All the other nations have one, so why can’t we?

The old prophet, named Samuel, tried to tell them otherwise and went to the Lord in great distress.

“Samuel”, God said. “They aren’t rejecting you. They are rejecting me. Give them their way. Give them a king. But tell them…with that choice, they are also choosing these things that a king will now demand of them as his right….”

We lean in now a little closer. What are we agreeing to when we want earthly rulers instead of a heavenly one? What? I want to hear!!

“And it came to pass, when Samuel was old, that he made his sons judges over Israel. Now the name of his firstborn was Joel; and the name of his second, Abiah: they were judges in Beer–sheba. And his sons walked not in his ways, but turned aside after lucre, and took bribes, and perverted judgment.

Then all the elders of Israel gathered themselves together, and came to Samuel unto Ramah, And said unto him, Behold, thou art old, and thy sons walk not in thy ways: now make us a king to judge us like all the nations. But the thing displeased Samuel, when they said, Give us a king to judge us. And Samuel prayed unto the Lord. And the Lord said unto Samuel, Hearken unto the voice of the people in all that they say unto thee: for they have not rejected thee, but they have rejected me, that I should not reign over them. According to all the works which they have done since the day that I brought them up out of Egypt even unto this day, wherewith they have forsaken me, and served other gods, so do they also unto thee.

Now therefore hearken unto their voice: howbeit yet protest solemnly unto them, and shew them the manner of the king that shall reign over them. And Samuel told all the words of the Lord unto the people that asked of him a king.

And he said, This will be the manner of the king that shall reign over you: He will take your sons, and appoint them for himself, for his chariots, and to be his horsemen; and some shall run before his chariots. And he will appoint him captains over thousands, and captains over fifties; and will set them to ear his ground, and to reap his harvest, and to make his instruments of war, and instruments of his chariots. (Military)

And he will take your daughters to be confectionaries, and to be cooks, and to be bakers. And he will take your fields, and your vineyards, and your oliveyards, even the best of them, and give them to his servants. (Rich vs. Poor)

And he will take the tenth of your seed, and of your vineyards, and give to his officers, and to his servants. And he will take your menservants, and your maidservants, and your goodliest young men, and your asses, and put them to his work. He will take the tenth of your sheep: and ye shall be his servants. (Taxes)

And ye shall cry out in that day because of your king which ye shall have chosen you; and the Lord will not hear you in that day. (We vary between love and hate on all of this depending on the “king” and how his choices affect us personally)

Nevertheless the people refused to obey the voice of Samuel; and they said, Nay; but we will have a king over us; That we also may be like all the nations; and that our king may judge us, and go out before us, and fight our battles. (We are tired of personal responsibility of morality and integrity dictated by God. So give us a leader we can either worship or blame.)

And Samuel heard all the words of the people, and he rehearsed them in the ears of the Lord. And the Lord said to Samuel, Hearken unto their voice, and make them a king. And Samuel said unto the men of Israel, Go ye every man unto his city.”
‭‭1 Samuel‬ ‭8:1-22‬ ‭

My friends….THIS is our heritage and where earthly kings took the place of the King of Kings! When we quote our “spiritual heritage”, let’s at least make sure we are telling the whole story.

Why DID Jesus come? Why WAS He proclaiming of all things, this idea of a Kingdom? What is He offering us? What is He leading us into as His followers? What is this new kingdom He speaks of and says He is King of? Pilate, you do have legitimate questions! And Jesus…you DO have the absolute, perfect and true answer.

“Then Pilate entered into the judgment hall again, and called Jesus, and said unto him, Art thou the King of the Jews?

Jesus answered him, Sayest thou this thing of thyself, or did others tell it thee of me?

Pilate answered, Am I a Jew? Thine own nation and the chief priests have delivered thee unto me: what hast thou done?

Jesus answered, My kingdom is not of this world: if my kingdom were of this world, then would my servants fight, that I should not be delivered to the Jews: but now is my kingdom not from hence.

Pilate therefore said unto him, Art thou a king then?

Jesus answered, Thou sayest that I am a king. To this end was I born, and for this cause came I into the world, that I should bear witness unto the truth. Every one that is of the truth heareth my voice.”
‭‭John‬ ‭18:33-37‬

For the sake of this post, our journey now stops. But our personal journey doesn’t. We will each one make a conscious decision which Kingdom we are consumed with, which Kingdom we will invest in, and which “King or Ruler” we will follow loyally.

Earthly kings and rulers will never, ever, ever have a plan or a peace treaty or policy that will not ask and demand of its people they rule over. There will always be unfairness, division, greed, and conspiracy everywhere.

But this is what we want. It is what we have chosen in our “spiritual heritage” since the old prophet told us not to that has elevated the role of a ruling man instead of a Reigning King.

At least, let our journey of spiritual truth be honest.

I originally recorded this yesterday morning for my SCI sisters and brothers in some spinal cord injury Facebook groups I am a part of. As an educator and advocate…and all things real around here…I need this to be on my blog.

For my sweet blog readers, and those who will find there way here desperately googling anything they can learn from about a new injury…I need this to be on my blog.

This may be a little TMI for some, but hey, it is what it is right? This is life with a spinal cord injury.

https://www.youtube.com/watch?v=uBhWeQbnNFk&feature=share

Position:

Pressure sores can appear overnight simply from parts of your body laying on a bed. You don’t feel the pain in that area to repostion, so blood flow stops simply because that blanket wrinkle laid under your ankle too long, or your knees were touching while on your side, or your hip or tail bone laid on the mattress too long.

Positioning is vital, and knowing where your body is and what it is touching is vital. This is challenging because of the lack of sensation you cannot tell what position your body is in, so it is visual. I don’t know if my legs are bent or straight or crossed or frogged out. I have to look and position them how I want them.

Many of us struggle greatly to turn and reposition ourselves because we also have weakness and deficiencies in our arms. Paralyzed bodies are dead weight and VERY heavy and repositioning them with weak arms can be challenging.

Because of this, pillows and propping can become a wonderful friend! I am always looking for new ways to get my body comfortable to get a healthy night of sleep…with as minimal pain as possible and no pressure sores in the morning.

Pain:

Pain is a huge factor for most people with spinal cord injuries. My pain is always at a high alert by bedtime because of the day. So I am already fighting the pain battle. I have muscular pain from wheeling and transferring myself all day. I have nerve pain from the need to get out of a sitting posture and needing my body to be straight. And because I am tired, my endurance level that I normally try to power through, is just gone.

For me, the pain I have is all night long. I am exhausted enough I fall to sleep pretty quickly but I would say a conservative guess is that I wake up at least 25 times a night to try to reposition my body because pain wakes me up. Repositioning it will give me some immediate relief and I will fall back asleep. Then, I just repeat that cycle all night long. I really am the Princess and the Pea. Propping my body with different pillows can also help with the intensity levels so I am always looking for any new ideas to help!

Quantity:

Spinal cord injuries cause extreme fatigue in and of themselves because of the damage to the neurological system. This is one of my greatest frustrations is how little I do to absolutely wear me out where I can barely hold my eyes open. I only know to describe fatigue as feeling like you have been drugged. It isn’t a “oh I am sleepy and I would enjoy a nap” or “wow, I want to go sit down and rest for a bit after cleaning my whole house.” No, it is like someone suddenly injected you with mega doses of Benadryl and you literally cannot think clearly because your brain is so fuzzy, you struggle to keep your eyes open because you literally cannot stay awake. It is horrible. Now add that to not having a great quality of sleep because of pain and waking up to reposition often and you have a very bad quality of life and feel miserable non-stop.

I have learned that a 20 minute cat nap can reset my neurological system. I don’t know why, but it just helps. It takes the edge of that fatigue and allows me to be “all in” with life again. If I take a longer nap, I cannot go to sleep at night and then I lay there feeling all my pain and it gets much worse! So, I LOVE to go to bed exhausted because I need to be in that “drugged” fatigue stage so I fall asleep quickly.

Some days, I have to take several of those naps. Other days, one is enough. It can happen in my car as one of my kids drive. It can happen in my living room chair as I am trying to get some computer work done. If I am out in my power chair for a day, I can lay it back and take one then (this has been an awesome way for me to continue a fun day with the kids).

Sometimes visiting a friend, I just need to go lay down for a few minutes and it really, really helps take my pain levels down so I can function. This is so unique to each person, but I have learned that I do require much more sleep than ever before. I need more hours at night (to make up for the broken sleep) and depending on the night I have had, some mornings I am just not able to get up quickly.

Sleeping is the time our bodies work to heal itself internally. It is important to keep fighting and learning and experimenting to figure out what is best for our long-term health in every area…not just spinal cord injuries. Because of our injures, finding these answers are much more complicated, but it is vital we do everything we can to keep ourselves healthy and safe while we sleep.

I hope this helps educate and advocate!
Keep on!

The Kingdom of God is just that…a Kingdom. It is ruled by our King. We are His subjects and He is fair and just and kind to those who are loyal to Him. He takes care of us and He asks that we help Him care for this Earth and all within it.

“And the Lord God took the man, and put him into the garden of Eden to dress it and to keep it.” Genesis 2:15

It is very reminiscent of a Monarchy…with the exception that it is not ruled by a human, but by God.

The early church shared all of their resources to sustain one another. Scripture says in Acts 2:44-45, that they put everything they owned together and every man had what he needed.

“And all that believed were together, and had all things common; And sold their possessions and goods, and parted them to all men, as every man had need.” Acts 2:44-45

The early church was told to take care of the widows, the orphans, the poor and the crippled. Scripture also says that those who have extra should help to meet the needs of those who don’t have.

“For I mean not that other men be eased, and ye burdened: But by an equality, that now at this time your abundance may be a supply for their want, that their abundance also may be a supply for your want: that there may be equality: As it is written, He that had gathered much had nothing over; and he that had gathered little had no lack.” 2 Corinthians 8:13-15

Doesn’t that sound like socialism? It does to me.

This leads to the next logical question then…

Why, as a Christian, would we not be pro-socialism or even pro-monarchy by a ruler since it seems to reflect God’s Kingdom?

I will go on record to say that more liberal social policies appeal to me. The idea that we can all take care of each other is massively appealing. I personally believe that as a Christian, taking care of one another is in itself the very act of taking care of Jesus.

“For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink? When saw we thee a stranger, and took thee in? or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee? And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” Matthew 25:35-40

Honoring equality, taking care of the less fortunate, being kind to this earth, and welcoming strangers from oppressive and foreign lands…all appeal to me.

I know that when God breathed into man the breath of life, and man became a living soul, God’s DNA became a part of us. This is why we are born knowing there is some sort of God and must find something or someone to worship. It is because the God DNA in each of cries out to connect to God. Over time, man has found a way to feed that DNA with many forms of gods…money, sex, fame, intellect, religion, politics, preachers, presidents…in a futile attempt to replicate in this broken, fallen world, what God created whole and perfect and functioning that mankind messed up.

So, herein lies the problem…

God gave these commands to the early church, because it IS the command of God to the church to be the mirror image here in Earth of what the Kingdom of Heaven will look like.

It is the church who should be promoting and practicing these social reforms…not politics.

The government has taken a role in problems that were to be solved by the church. The church has allowed their responsibilities to be replaced by political powers that be. And it is the church who now squeaks the loudest that the government should not mandate social reforms we do not like, yet we are practically doing nothing in return.

I will ask myself these questions in full transparency as a Jesus follower…

⁃ I am pro-life and want political action to be so, yet have I fostered or adopted or reached out to a pregnant mom to ask if she needed housing and help with her baby? Or do I just shout against abortion?

⁃ Have I helped a person with a disability to see if they had needs? Medical help? Equipment help? Daily care help? Or do I just shout for Medicaid cuts.

⁃ Have I bought food for a family, or invited them to dinner, or provided Thanksgiving dinner, or provided breakfast before school or snacks for after school…or do I just demand Food stamps be cut.

These are hard questions to ask and to answer, yet they must be asked…and answered…if we are sincerely seeking to honest and true.

The problem with the government trying to replace the God DNA with themselves is also very problematic. It will never work and God will let things crash.

First of all, the government is not the church. God told the church to do these things, not the government. He does have a plan for government. According to Scripture, the governments job is to punish evil and reward good.

“Submit yourselves to every ordinance of man for the Lord’s sake: whether it be to the king, as supreme; Or unto governors, as unto them that are sent by him for the punishment of evildoers, and for the praise of them that do well. For so is the will of God, that with well doing ye may put to silence the ignorance of foolish men: As free, and not using your liberty for a cloak of maliciousness, but as the servants of God.” 1 Peter 2:13-16

I think our judicial system is probably the most accurate form of biblical government we are to have.

Second of all, God will have no other gods before Him, so if a government attempts to take the place of God, it will fall.

So the logical question that now follows is…

“Shouldn’t a government reflect Gods Kingdom?”

To this I say no. It simply cannot. You see, even as the church, we have one King…one Lord…one faith…one baptism…and all of our care for what God has given us to do comes from our King. It is because of HIS mandates that the church, under the leadership of our King, should reflect the Kingdom of God here on earth.

It is His power that enables us. It is His will that inspires us. It is His mission that compels us. It is His goodness that fuels us. It is His Kingdom that guides us.

“There is one body, and one Spirit, even as ye are called in one hope of your calling; One Lord, one faith, one baptism, One God and Father of all, who is above all, and through all, and in you all.” Ephesians 4:4-6

Man-made religions and institutions get into trouble having an earthly head. Pastors get into trouble trying to be the head. This is why the Apostle Paul said to only follow Him as he followed Christ. Blind loyalty and followship to any “head” is extremely foolish. This is why we are to render to Caesar the things that are Caesar’s, but we are to render to God the things that are God’s, and at the end of the day, why we obey God rather than man…even to governments that have taken authority in spirituality that was never theirs to have. That belongs to those who walk in the Spirit.

Governments get into messes trying to reflect the Kingdom of God when they are not spiritually equipped to do so. The majority of politicians are corrupt, carnel, power-hungry, and most of the time only looking out for how to promote themselves under the guise of taking care of the citizen. There are good ones out there, but they are rare.

For a government that is so removed from God overall, to now take their same platform to promote a type of government that God said belonged to the church, is already going to be futile…no matter your political party. Corruption sets in. Power sets in. Greed sets in. Money-based decisions set in. And off the rails it goes. There will only be discord and unity will not be found. Unity is found in Christ and Christ alone and light and darkness cannot be traveling companions according to God.

My hope is not in a political party or candidate.

“Some trust in chariots, and some in horses: but we will remember the name of the Lord our God.” Psalms 20:7

This world is not my home.

“I am a stranger in the earth: hide not thy commandments from me.” Psalms 119:19

My citizenship is sure and my future is bright!

“These all died in faith, not having received the promises, but having seen them afar off, and were persuaded of them, and embraced them, and confessed that they were strangers and pilgrims on the earth.

For they that say such things declare plainly that they seek a country. And truly, if they had been mindful of that country from whence they came out, they might have had opportunity to have returned.

But now they desire a better country, that is, an heavenly: wherefore God is not ashamed to be called their God: for he hath prepared for them a city.” Hebrews 11:13-16

I am careful where my allegiance lies as serious consequences will follow my choices.

“Woe to the rebellious children, saith the Lord, that take counsel, but not of me; and that cover with a covering, but not of my spirit, that they may add sin to sin: That walk to go down into Egypt, and have not asked at my mouth; to strengthen themselves in the strength of Pharaoh, and to trust in the shadow of Egypt! Therefore shall the strength of Pharaoh be your shame, and the trust in the shadow of Egypt your confusion.” Isaiah 30:1-3

This is the team I have joined.

“They shall ask the way to Zion with their faces thitherward, saying, Come, and let us join ourselves to the Lord in a perpetual covenant that shall not be forgotten.” Jeremiah 50:5

As the church, as followers of Jesus, I pray we take our own personal, spiritual responsibilities to others just as seriously as we take this election.

If not, we are the problem in this country and I hope we don’t blame one more Republican or Democrat for our failures.

This was on my heart so early this morning when I awoke. I posted this to my Facebook page, but I want it here. I don’t want this lost in years of Facebook posts, but I want it here where I can find it, reread it and remember. I want always to remember.

May I offer my heart this morning?

From the beginning of time, evil has existed.

From the beginning of time, Satan has sought to isolate and pull you into aloneness to start his subtle works. (Where WAS Adam when Satan first started talking to Eve? Where are YOU in your greatest temptations?)

From the beginning of time, Satan knows that God’s plan is good…and right…and best…and beautiful…and so Satan just works to devour and destroy and kill that very plan.

From the beginning of time, mankind has made conscious choices to obey and trust God, or follow their own devices and ideas that Satan gladly plants in their minds. This is why Scripture says Satan has blinded us. But that isn’t because Satan is all powerful. That description only belongs to God. Instead, Satan is the ultimate bully and manipulator…asking you over and over and over in many different forms and ways to cover your eyes or take your eyes off of Jesus…the Author AND Finisher of our faith!! That is how the blindness happens…one choice after another of accepting Satan’s bondage and suddenly…your are now deceived and blind and given over to a completely different mind than the mind of Christ.

Today…right now…

Do not be shocked that these things are happening in the world. They always have. You may have been sheltered in your neck
of the woods (America) but they have always happened. Ever stop to ask why people came to America in the first place? Horrific, religious persecution is a big reason. This is not new in the world.

Do not be shocked that disease and pestilence and famine and abuse and destruction are happening in the world. It always has…since the beginning.

Ever since Lucifer was cast out of Heaven, he has been on an eternal temper tantrum seeking to hate anything God loves. And that includes you.

There is only one hope….and it is huge.

Since the beginning of time, there has always been a remnant. A remnant that chooses to be faithful. A remnant that chooses to obey and trust the Lord. A remnant that has fled from unrighteousness and turned to God. A remnant that knew this world was just a path to home. A remnant that knew they were habitants in this world to be the light to shine the way to our eternal destiny, but they are not of this world. A remnant that boldly proclaimed the truth of God…not the opinions of society. A remnant that has faced unbelievable horrors throughout history and whom God Almighty Himself said that this world was not even worthy of them. Oh what an epitaph!!

This world needs to pledge allegiance to King Jesus…not nationalism.

This world needs the Kingdom of Heaven…not the followship of a man.

This world needs an eternal vision…not the American dream.

This world needs the followers of Jesus to be the lighthouse when it feels dark.

This world needs followers of Jesus to be peace in chaos.

This world needs followers of Jesus to be joy in misery.

This world needs followers of Jesus to remember that they have one ruler, one Lord, one God that they worship, one truth they proclaim, one way they follow and one life to live.

At the beginning of this year, I saw
SO many churches use a version of this theme…”2020…the Year of Vision”.

It is.

If 2020 is rattling our cages, then I say hallelujah!!! God has answered your theme.

It is about time we believers get off our couches of complacency and have this “form” of godliness while totally denying the power thereof! Power for what?!! The power to be all of those above things I mentioned to this scared, confused, depressed, lonely, self-gratifying, personally destructive path straight to hell that Satan is joyfully dancing in your life with his desire to destroy you.

Church, he has done a good job of it. Inside our church buildings. Inside of our Christian homes. Inside your own heart. One little choice at a time.

I am thankful for the many benefits and freedoms in my country, and I am thankful for leaders who put God and His righteousness as the guide for their administration, but…

Maybe instead of praying for God to come zap me out of here to keep me from suffering anything…I need to thank Him for choosing to include me in the fellowship of His sufferings that I may know Him and His power.

We need to strengthen ourselves in the Lord, tuck up close to the Captain of Angel
Armies and prepare to do battle….as thousands of good soldiers throughout the ages have already done.

As a good soldier of Jesus Christ, my prayer should not be escape. My battle cry should be “Lead me and I WILL follow!!!”

Thank you, Lord, for the vision you are giving us in 2020.

The last two songs I have written about have been old hymns, but the title today is one I heard not long after I had been paralyzed. It was sung by Ricky Skaggs and it has never left my heart.

I mentioned a couple weeks ago on Facebook, that I had a rough couple weeks. It just felt like such a spiritual battle was raging right over my head and I certainly felt the weight of it. I prayed specifically that morning and told the Lord that I felt so very discouraged from the weight I was feeling. I asked Him specifically to do something to strengthen and encourage my heart and I was feeling very weak under the load. That day, I had 5 different, precious friends from all over the US reach out to me and let me know that I was on their hearts and that they were praying for me. They didn’t know…but I did…that their obedience to the Lord to pray for me was a direct answer from my sweet Lord to encourage and strengthen my heart.

I have felt a bit like Moses, in the battle, whose arms were weary, and Aaron and Hur came up on the mountain and just stood their and held his arms. When his arms were raised, there was victory in the battle. When his arms were down, they started losing the battle. He was tired. He could no longer keep his arms raised all alone, and those brothers just came and stood with him and held and strengthened his arms. The Israelites had victory that day because of the supporting role of Aaron and Hur in the battle.

Because of the prayers of my friends the day I talked so specifically to the Lord, and their obedience to Him as He prompted them to pray for me, I also woke the next morning with that load completely gone. I truly felt that spiritual battle that was raging over me had been won…by Jesus Christ!! The circumstances were still the same, but the storm had passed. Prayer. It is power.

My level of injury is a unique one as a C5-C7 incomplete. I look and function like a T- injury and so I am very deceiving. I have initial strength, but because the signals are weak and damaged to my arms and hands, my strength taps out very quickly. That 10 lb. bag that needs lifted? I can probably lift it once if it isn’t too high, but that is about all you will get from me. The longer I have had this injury (11 years now), and as I am aging with a SCI, the weaker these arms are becoming. So, in a very physical and demonstrative way, I totally understand and empathize with Moses and his weak arms in the battle. The depths of appreciation I have for my children and friends who help me on a daily basis because of my disability makes me love Aaron and Hur so very much in that story.

I also understand the depths of those spiritual weary arms too..when you have carried a very heavy load for a long time, and those muscles are quaking, and shaking, and straining, and screaming in agony for relief. Then help arrives. Somebody is stopping their life to pray for you. Do you know the power that is behind that simple act?

Someone is stopping to say that they care enough for you to pause their day…and pray. They take your name straight to the throne of God and intercede on your behalf! This is NOT a simple, nor placating, thing to say or do. If God tells you to pray, then pray!! If God puts someone on your heart, pray! If you tell someone you will pray for them, stop and do it right then! Oh, the magnitude of praying for another. Maybe we won’t even know the full effect of that act until we reach eternity and know all things. I just know that in my limited earthly knowledge, it is powerful.

I must take this back to the song, though, and why it in particular speaks volumes to my heart. The particular video of this song builds you into gratitude that someone…someone…is praying for you. Your heart swells in gratitude for all these people that love you and pray for you, but right at the end, Ricky Skaggs drops a bombshell. He quotes a Bible verse. That “someone” who is also praying for you? It is Jesus.

Jesus. Jesus prays for us. Jesus intercedes for us. Jesus stops what He is doing and takes my name to the throne of God. Jesus loves me and cares for me enough to mention my name and my needs and my searching heart…even in the times I don’t even know what to say or how to pray…to my Heavenly Father.

Somebody’s praying…and that Somebody is Jesus. Friends, as we pray for each other, it is because we are following the example of what Jesus is already daily doing for each of us.

“Wherefore he is able also to save them to the uttermost that come unto God by him, seeing he ever liveth to make intercession for them.” Hebrews 7:25

“Who is he that condemneth? It is Christ that died, yea rather, that is risen again, who is even at the right hand of God, who also maketh intercession for us.” Romans 8:34

Hallelujah!

This is the exact video I watched so many years ago that has continued to be a blessing and encouragement to my heart over and over and over.

 

Music speaks to my soul. David encouraged himself in the Lord and I have no doubt, that as a musician, music was one of the chief weapons against discouragement. This series will highlight songs that have comforted my soul.

Song 1: There is a Balm in Gilead

Song 2: The Love of God

 

 

 

Y’all, I have become a crier. Seriously. I have NEVER been a crier! It has been so bad – me making sure that I am “strong” – that there have been times when I have wished I COULD cry!

I read my Bible and as I am talking to the Lord, I cry. When I go to church and the songs of praise to our Lord spread across the auditorium, I cry.  When someone comes forward to the altar to talk to the Lord, and other gather around to pray with them, I cry. When my kids give me a sweet card, I cry. When I am watching the hurt or pain or love of another, I cry. When I am in my car alone, with my Brooklyn Tabernacle Choir Pandora station playing, and those songs of Zion resonate in my soul, I raise my hands and cry.

What is my problem?!! Or better…is it a problem? I can’t stand manipulative, dramatic crying. It repulses me actually. But this is different. 

This past year and a half has been one of the roughest I have ever lived. I have had to make decisions I never wanted to have to make. I have made a major move to another state and leaving my sweet grown daughter still living there. I had some scary health issues (double vision and fears of worsening health) that demanded more tests. I am embarking on a new journey of a million unknowns where fears can be almost overwhelming. I have grieved many losses. So, I have asked myself…are you crying so easily because you are depressed? And although, I have had tears of grief and sadness, that is not what spurs me to cry so easily. I’m not depressed. I am not sad. I am very happy and content. I have such peace and joy in my heart. I feel the presence of the Lord and see His hand over and over in my life and the lives of my children. Not always, of course, but truly almost always. So what is it? What is this abundance of tears in my life that is new to me?!

It is the never ending, always available, cherishing, protecting, engulfing, compassionate, empathetic, understanding, affirming, undeserved, and precious love of God. I am convinced that the suffering we experience in life, and as we look to Him in faith to be all to us and to fill all of our empty places, this is the promise and reward to those who follow Him…He leads us by His Spirit and He fills us with His love. 

Therefore being justified by faith, we have peace with God through our Lord Jesus Christ:

By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God.

And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;

And patience, experience; and experience, hope:

And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.

Romans 5:1-5

I feel that love when He speaks to me in Scripture. I experience that love when I talk to Him and feel His arms of love and support wrap around me. I witness that love when I see Him touch the hearts of others and they respond in humility and go forward and when the love of God flows through others as they gather around that searching soul. I hear that love in the praise of our Lord in song that reminds and declares and inspires to keep looking unto Jesus! I partake in that love when it comes through others whether that be a phone call, a text, a Facebook message, a visit to my home, or words of encouragement and acts of love from my kiddos.

The love of God!! It overwhelms me! Suddenly, this strong, tough girl is melted like butter and the tears just pour out of me!

If the rough circumstances of life have me crumpling underneath the bounty of God’s amazing love…then so be it.

Thank you, dear God, for your gift of true love.

The Love of God

Verse 1:                                                                                                                                               The love of God is greater far
Than tongue or pen can ever tell;
It goes beyond the highest star,
And reaches to the lowest hell;
The guilty pair, bowed down with care,
God gave His Son to win;
His erring child He reconciled,
And pardoned from his sin.

Chorus:
Oh, love of God, how rich and pure!
How measureless and strong!
It shall forevermore endure
The saints’ and angels’ song.

Verse 2:                                                                                                                                            When hoary time shall pass away,
And earthly thrones and kingdoms fall;
When men who here refuse to pray,
On rocks and hills and mountains call;
God’s love, so sure, shall still endure,
All measureless and strong;
Redeeming grace to Adam’s race
The saints’ and angels’ song. [Refrain]

Verse 3:                                                                                                                                            Could we with ink the ocean fill,
And were the skies of parchment made;
Were ev’ry stalk on earth a quill,
And ev’ry man a scribe by trade;
To write the love of God above
Would drain the ocean dry;
Nor could the scroll contain the whole
Tho’ stretched from sky to sky. [Refrain]

Music speaks to my soul. David encouraged himself in the Lord and I have no doubt, that as a musician, music was one of the chief weapons against discouragement. This series will highlight songs that have comforted my soul.

Song 1: There is a Balm in Gilead

 

Music speaks to my soul. David encouraged himself in the Lord and I have no doubt, that as a musician, music was one of chief weapons against discouragement. This series will highlight songs that have comforted my soul.

I have been using this CBD mixture (CBD oil, frankincense, Holy Basil) for well over a year now. I have been able to get completely off my Baclofen (a neuro depressant for my wild bedtime spasms). It has helped my spasms to be manageable, it has helped me be able to get deep sleep, and it has helped me to wake up rested…actually rested…and ready for the day!

Having a spinal cord injury, my sensation is very weird. At times I think hot water is being poured down my left leg and I grab my leg wondering why I am wet, but I am dry as can be and once again, my “feelings” have deceived me.

When I wake up in the morning, my “sensation” is that I am a twisted pretzel. My hands are fisted up and very tight, I feel that someone has braided my legs and they are all in knots. My insides feel so tight that it is hard to get a deep breath. I feel like someone has wrapped my body in tight elastic from my neck down. My body is zapping lightning bolts and intense buzzing and begging for relief from laying down.

I wake and start thinking through what is reality (hands are drawn and tight) and what is not (my legs are not braided…they are still where I put them, I am not wrapped in elastic). I start stretching my hands to get them to wake up for the day and then reach over and grab my CBD salve apply to my hands and spinal cord. In about 30 minutes, I am able to get out of bed and start my day. Oh what a miracle salve that has been to me!

Until this happens…

Do you know how quickly my life gets complicated when I run out of this stuff!? I feel horrible. My body feels horrible. My sleep is disrupted. My body won’t cooperate with me! My fatigue is overwhelming.

Recently I was out for over 3 weeks. I thought that I would probably be okay because I had done so well for so long. But, day by day I felt worse and worse. I ordered more and within 2 days, my body was so thankful for the relief it found.

May I share how the Lord brought this home to me? My Balm in Gilead reminded me again, as He often does in life, that He makes all things better. He brings rest. He brings comfort. He brings relief from pain. He renews my strength. But the most wonderful and precious thing is that He never runs out! He is always available and never ending. Oh what a precious Balm for me.

There is a balm in Gilead
to make the wounded whole;
There is a balm in Gilead
to heal the sin-sick soul.

Sometimes I feel discouraged,
and think my work’s in vain.
But then the Holy Spirit
revives my soul again.