New Urologist and Interesting Information

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

September Spinal Cord Injury Awareness- Sleeping

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 Possible Problem of this Year’s Election

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.

2020…Following or Falling Apart

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.

Song Series…”Somebody’s Praying”

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

 

 

 

Song Series…”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

 

Song Series – “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.

So Many Changes…

Changes Ahead for DDA Services: An Overview | Informing Families

This past year has been something else. A LOT of changes have happened in my life. Some I can share, and some I will not share for the sake of others involved. I know it has been forever since I have written here and I have missed it! However, too many major irons in the fire just didn’t leave me with the time I needed to talk here. I think I need to talk though.

Since my first issues with my health that led to my permanent disability, back in 2009, writing has been therapeutic for me. It is good for my soul. I know why so many of us deep “feelers” out there write…whether that is in music, or poetry, or blogs, or books. I can’t speak for all, but for me, I need to process my thoughts on paper. They are all swirling in my head as I think things through and it all stays muddled. I start writing. Suddenly, the words just flow out of me and it all makes sense.

I don’t always write to help others. Much of what I write is to help me.

Here we are….June of 2020…and I haven’t written anything since last September! I am back. I am going to write. I am going to video. I am going to share my heart (much of it at least), and I want this space to be here for me and for you. I am now ready to write again.

So what are some of the changes?

  • I live in a different state as I have moved from SC to GA. We won’t talk about the why’s of all this, but it had to happen and it has been major. There is much we will talk about with our new life here in GA.
  • I live near some family now! That hasn’t happened in over 16 years! We will talk more about all that later too!
  • Employment changes are happening.
  • I have a different vehicle. We will talk about that (and the fun modifications) later.
  • Changes are still happening in my life that I don’t know the answers or conclusions too, so it is literally one day at a time around here. That gives way to things to talk about also!

I named this blog “This Enabled Life” as a spin off the word “disability” and that I am not just disabled….but instead, I am enabled. I draw strength from the Bible passage in I Timothy 1:12 that says, “And I thank Christ Jesus our Lord, who hath enabled me, for that he counted me faithful, putting me into the ministry.” For Timothy, that meant pastoral ministry, but that isn’t the only ministry option.

There are so many “ministries” that the Lord calls us to. Maybe it is the ministry of suffering…where no one can minister to another who is suffering like you can, because you get it. Maybe it is a ministry of loneliness. Maybe a marriage break up. Maybe wayward children. Maybe the death of a loved one. Maybe to unwed mothers. Maybe to foster or adopt children. Maybe to those children who you teach God’s Word to in Sunday School. Maybe to the children in your home that God has placed at your feet every day to raise. The actual “ministry” itself isn’t the point. The point is that Timothy was thankful. Thankful that God enabled him. Thankful that God counted him faithful. Thankful that God had put him into that ministry. 

I do not know what God has for my life and my future right now. I do know that God has given me some new ministries in this season. I desire to be thankful. I need His enabling. I want to stay faithful and true and to hear my Lord say, “Well done, thou good and faithful servant.” 

 

 

SCI Awareness and Secondary Conditions

I remember early on in my spinal cord injury, one of my doctors said “You know, people with spinal cord injuries really have a pretty normal life expectancy that is comparable to everyone else!” Since I was already pretty traumatized and not sure I was going to even live another year, I thought, “WOW! That is wonderful news!! I think I might make it!!” Then he said, “It isn’t the spinal cord injury that can kill you, it is the secondary conditions.” Dejected, I immediately went back to my former thinking that death would be soon!”

As comical as that story is to me, there still is truth in it that you would be a fool to not be alert and attentive to. But…what are those secondary conditions that can get you? Let me list them for you (with a very brief description)…and if you are SUPER curious, I will add a link that will list more detailed information on each of these.

  • Autonomic Dysreflexia – this can happen to anyone with an injury level of T6 or higher. Any problems your body feels (shoes too tight, sitting on a wrinkle, mosquito bites (yep, really), bladder or bowels too full, or just anything where your body is uncomfortable but you cannot feel it….affects your autonomic system and it reacts. Bad headaches, goose bumps, sweating, breathing difficulties, spasms, stuffy nose, and the most scary is that your blood pressure can skyrocket to where you have a stroke or heart attack. It truly can be life and death to figure out what is going on with your body and get it feeling better so you don’t die.

 

  • Bowel and Bladder Management – this is unique to each individual how to maintain an efficient and healthy bathrooming program. Urinary tracy and kidney infections and bowel impactions can land you in the hospital very ill and lead to sepsis quickly. It takes time and a lot of trial and error and it doesn’t take much to throw it off, but this truly is an area that you cannot afford to be vigilant on because it can cause a LOT of long-term health complications that could lead to an early death.

 

  • Deep Vein Thrombosis (Blood Clots) – the lack of mobility and decreased circulation that comes from a lack of movement places us at a much higher risk of blood clots. Since many lack the pain sensation a blood clot would trigger, you must be vigilant and keep an eye on any unusual swelling or heated areas.

 

  • Respiratory – for those with higher levels of injury, the respiratory system is compromised. Some will require the use of a ventilator long term, but even those who don’t, are still compromised. Because your diaphragm, intercostal and abdominal muscles are paralyzed, it can be very difficult to inhale or exhale with much strength. Coughing, talking loud, and even breathing deep require much more work. For me, I cannot get the volume or hold a note very long at all anymore. I also get very dizzy from a lack of oxygen if I sing with everything I have. This all varies in strength according to each individual and their injury.

 

  • Skin Care (Pressure Sores) – Our body is layered….bone, which is wrapped in muscle, coated with a layer of fat and the all covered up with our skin. When your muscles are paralyzed, those muscles all shrivel away and what is now left is bone on a layer of fat covered by skin. Truly, the more fat layer you have, the more padding it does help to give you from bones killing off the blood supply to your skin which makes your tissue die, which is exactly what a pressure sore is. They begin with a red spot and can QUICKLY crater into a horrible mess…which means you are stuck in bed until it heals….which can take months and month. Being vigilant is an absolute in this area! Checking your skin daily is imperative to stay ahead of this.

 

  • Spasticity – Spasticity can be either stiffness or your body jumping around in spasms. Many times it will be a combination of both.This is another area that you must learn your body. It is absolutely affected by weather, stress, sickness, positioning of your body and can also be a sign you are having an autonomic dysreflexia episode. Increased spasticity can be a warning signal that something is wrong and you need to figure out what it is. (broken bone, pressure sore, UTI, etc.) Once my spascticity was horrible for about 3 days and I found out my left hip was completely out of socket. I felt no pain but my body let me know. It is important to know what your “normal” is so you will know when something else is going on.

 

  • Sepsis – Sepsis is deadly and one of the main killers of those of us with spinal cord injuries. Sepsis is blood poisoning from an infection most likely to come from UTI’s (which can be very bad before we even know we have them because we do not have the pain and symptoms others have), pressure sores (open wounds are very susceptible to infection anyway and pressure sores go all the way to the bone), and pneumonia (from a compromised respiratory system). It is better to go to the hospital for 10 false alarms then to mess with becoming septic.

I know this all can sounds terrifying, but this is the reality of having a spinal cord injury and the high risk we have of these other complications. Knowledge is power and it is better to arm yourself with what you know could be, so you can prepare so it will not be.

Thank you for learning!

Here is the promised link for more information:

Secondary Conditions Page from the Christopher and Dana Reeve Foundation

 

SCI Awareness…”I never knew…”

Today’s SCI Awareness post is written by my friend Roberta Noack Palmer and shared with her permission…

There’s so much more to a SCI than just not being able to walk. Until I joined this club I had no idea of what life would be like living with a spinal cord injury (SCI).

*I had no idea I’d be using catheters and have a bowel program.

*That I’d have to check my skin constantly. I had no idea that I would not be able to regulate my temperature or that my blood pressure would take dips so low that I have to have my legs raised.

*That I’d always have pain.

*That I’d have to take medication for spasms for probably the rest of my life.

*That I’d be dealing with the never ending maintenance of my body just to stay healthy and alive.

*I had no idea of the frustrations I’d feel because I couldn’t do something but also the patience I had to learn because of this.

*I had no idea I’d have to preplan everything…from booking a flight or hotel room to tickets for an event. Then crossing my fingers the preplanning was successful.

*No more being spontaneous. Always having to have a plan B or C or D.

*I had no idea it would be so hard to find a parking spot to let my ramp down just to get in and out of my van.

*I had no idea people would stare at me like I have 2 heads or pray over me while in a Costco.

*I had no idea there was a rehab hospital that would teach me how to live with my paralyzed body.

*I had no idea that I had the strength and will to figure out my different way of life.

*I had no idea that my family and friends could support me the way that they have and do.

This is what it’s like living with a Spinal Cord Injury.