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.

September – Spinal Cord Injury Awareness Month

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I have decided this month to operate backwards and instead of blogging and sharing on Facebook, I am going to post on Facebook the things I want to say about spinal cord injuries this month and copy them over here to organize them. So, if you don’t follow me on Facebook, you will still find the things I am writing here. I am also going to stay current on this particular page to link every single thing I write this month in this post. That way, they will all be in one place.

  1. Spinal Cord Injury & Emotions
  2. Spinal Cord Injury & Weather and Pain
  3. Spinal Cord Injury…”I Never Knew”- Guest post by Roberta Palmer
  4. Spinal Cord Injury & Secondary Conditions

SCI Awareness – SCI & Weather & Pain

Spinal Cord Injury, Weather and Pain…

I’m sure you already understand the connection between weather and pain if you have any sort of old injury (knee, hip, ankle) that you can feel acting up when it rains. What is that all about? Is it the actual wet water…or the change in barometric pressure that happens with changes in weather systems or is it just a crazy idea altogether? I don’t know the scientific answer…but I can only tell you what I think that my own body answers.

I had an old knee injury from a car wreck in college that would always bother me when it was going to rain. Now that I am paralyzed, that knee pain never bothers me anymore. The change in barometric pressure will affect a weak area in your body.

The weak area in my body now, is a damaged spinal cord…at a pretty high level. My spinal cord was damaged at the C5-C7 vertebrae level (which are located in your neck). If you know the spinal cord, you also know that nerve roots go out from the level on your spinal cord to the parts of your body to control the body’s movement and sensation. So, if the spinal cord is now damaged, when the barometric pressure changes, it can really wreak havoc on your parts of the body that those nerves connect to.

The logical question is then, “how can you feel anything if you are paralyzed?” That is a great question and the simplest answer is that I don’t “feel” normal, but I DO feel a LOT! I can’t feel touch or any normal sensation, and I can’t make things move, but every time my brain sends a command down my spinal cord to even try to figure out what is going on, it hits that damaged spot and just goes crazy. So, I have a ton of nerve pain that expresses itself in my body as lightning bolt pain (a quick jolt that runs through your body and takes your breath away), as extreme burning pain (like my body being sanded), vibrating pain (like when your hand falls asleep and it is in that horrible stage of trying to wake up and you don’t want to move or touch it yet), and the your squeezing-me-too-tight pain that feels like someone has wrapped you up way to tight in an ace bandage and their squeezing the blood out of you. That sounds dramatic and graphic, but that truly describes nerve pain that never leaves my body…but are in varying degrees from a hushed whisper to screaming loudly. Because my spinal cord was damaged high, that nerve pain covers my neck, my entire torso, my arms and my legs. Sometimes it even affects the right side of my head. I am an incomplete injury so some nerves are still connected and work to certain areas of my body in sensation and movement, but are left altered in a variation of strength or sensation. More on this later!

On top of the nerve pain all over my body, my working body parts are overused to compensate for the non-working parts so muscles and joints are always complaining about that! More on this later too!

The weather (barometric pressure) changes DO affect the volume of that pain in me. When weather is moving in it is the absolute worst. I feel HORRIBLE about an hour before it rains. Once it starts raining, and settles in, I still feel bad but it is better than before it rains. I feel the absolute best in sunshine and clear skies. So, when the barometric pressure is changing/moving is absolutely and consistently is made known in the levels of all sorts of pain in my body. When the pressure is stable, those are the much better days pain and activity wise.

So, if you are a health professional, or a family member or friend to someone with a spinal cord injury, or even a newer injury, it may be helpful to remember that days the weather is changing are days that you just aren’t going to be at the top of your game and adjust as needed.

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SCI Awareness – SCI & Emotions

Warning…lengthy post….

With a spinal cord injury, there is SO much physical that happens and takes the front and center in the early days. I won’t even get into that yet. However, as the original shock of it all wears off, and because so much of the physical has changed, the emotional side becomes really huge.

You see the pain and fear in the eyes of those who love you, so you try to hold it together and be strong…for them.

You see how much extra work has now been given to them to take care of all your new deficiencies…and so you try to not to ask for anything more than what you must have to get through a day…for them.

You are trying to figure out how to live in a world not prepared (neither physically nor emotionally) for your disability and figuring out how to navigate always being “the different one that gets stared at..a LOT” and so you sort of learn to look at the ground while out in public…or you try to constantly feel that you have to prove that you belong in society like everyone else and you develop insecurities just trying to live a “normal” life…to help “them” not feel inconvenienced by you.

This is a HUGE blow to your identity, in trying to figure out who you are now, in trying to navigate all the people in your life and finding that delicate balance of still being an individual that now needs help, without losing who you are by being a burden for all the help you now need.

And it takes time…

✓ It takes time to learn how to do more on your own.
✓ It takes time to learn your new normals.
✓ It takes time to accept and then define who the “new you” even is.
✓ It takes time to learn to look up, and meet those staring eyes with a confident smile.
✓ It takes time to be okay that people will never understand unless they live with the exact same things you do every day.
✓ It takes time to learn to just stop explaining and just go on…silently thanking God for them that they don’t have to live with a spinal cord injury and that is why they are clueless.
✓ It takes time to be okay with who you are and who you need to be to just be allowed to be an individual again without hundreds of opinions and expectations trying to tell you how you should best do things now.
✓ It takes time for those around you to either love and accept the new you, or to just walk out of your life.
✓ It takes time you to learn who your real friends are and who loves you anyway.
✓ It takes time to not feel you have to prove you are still capable of so many amazing things!
✓ It takes time to marry the thought that yes, you can have physical needs to be taken care of, yet still be 100% in charge of your care and your decisions and your life.
✓ It takes time to be you again. And if the “you” of today looks and operates differently than the you before, it is totally okay. Life has thrown a rough path your way and you didn’t quit. You kept going.

This process of time is always in motion…with every new circumstance or event thrown at you…you constantly are taken down an emotional path. The cool thing about time is that you have practiced this emotional journey enough to navigate most things much quicker. Like driving these wheelchairs…we were all HORRIBLE at first and barely had the strength too, but give us awhile and we can maneuver them better than anyone else. This is the emotional journey also.

Time is a wise teacher if we will open our hearts and learn.