This crew…they truly are the main reason I get out of bed each day.
They inspire me, correct me, challenge me, encourage me and love me. They are fiercely protective of me and yet I can get on their last nerve. They laugh with me, and they laugh at me. They think I am cool in one moment and an old lady in the next. They have made me laugh, they have made me mad, and they have made me cry…for both happy and sad reasons…and I have them. They aren’t perfect and neither is their Mama, but I would do anything in the world to make sure they are healthy in every way…physically, emotionally, and spiritually.
They are my tribe. I would give my very last breath for these people. I LOVE watching God write their life stories (sometimes holding my breath and covering my eyes!) and I love watching them grow and learn and fail and succeed.
These are my children. My treasures. My only earthly possession that I get to take with me into eternity. I pray that my life will never discourage them from following Jesus!
My Briley – Strong. Independent. Knows her mind. Fair minded. Hard worker! Had to grow up way too fast and because of that, is extremely responsible and reliable. She has had her own mountains and valleys and she has come out stronger and more sure of herself because of it. She has lost almost 100 lbs and is the best EMT! She works hard and takes overtime and encourages others that work with herS Her mind amazes me with her ability to retain medical information. I love watching God use her to help others! My favorite times of the week are when we get to FaceTime and catch up. She is 100% a grown woman and our relationship has changed. We now just get to be dear friends and I get to support and encourage her and she does me.
My Caleb – Tender. Compassionate. Empathetic. Responsible. He is a man of l character and integrity. Hard worker. He has led from a back seat with his own character and relationship with Jesus and is strongly led by God’s Word. He works full time, does full time college classes online and still makes time his Mama and younger siblings who need him. He already has a strong reality of servant leadership in his life and I cherish his perspective and counsel.
My Isaiah – Strong leadership. A logical thinker. Loves consistency and hates hypocrisy. Thinks much of spiritual things and lives them out without much talking about it. He just is. He is constant. A strong force in this family. I admire his work ethic and his willingness to own up to the areas in his life he works to improve. He is very diligent and trustworthy. He is also a man of character and integrity and his word is his deed. I love asking him for advice about things because he sees in such big picture.
My Audrey – Tenderhearted. Merciful. Behind the scenes. A servant’s heart. The quietest of them all, but don’t let that fool you. She has a good head on her shoulders and thinks both practically and is so empathetic and can see other perspectives as well. She is a hard worker but her work is more intentional and takes on meaning for her vs just muscling through it. Her ability to see an entire situation and make a call is already wise beyond her years. She is a nurturer and loves to take care and comfort – whether that is a sibling, an animal, children and even her Mama. She loves Jesus and is tender to His Word. I respect and need her perspective as she thinks differently than me.
My Macey – Quick-witted. Spunky. Very fair. She has tremendous discernment and can see through a person or scenario and be exactly right. She is confident and sure of herself, and she is very willing to laugh at herself when she gets too energetic in being confident for someone else’s life! She is disciplined and a diligent worker. She has a great sense of humor and a great love and talent for music. She loves Jesus and wants to serve Him. I love hearing her thoughts and opinions about things because her perspective is almost always on point.
My Elisha – A helper. Very observant. Caring. Good Common sense. I rarely have to ask Elisha for anything I need help with. He has normally already observed, assessed and has a solution in place and then tells me. He is almost always spot on! As the youngest, he has a lot of “parents”, but that has matured him and he is learning how to filter voices in his life and what is of value and what is not. It is a wonderful life skill that is maturing him. He has a strong sense of right and wrong and such a tender heart to the Lord. When God speaks to him about something, he has decided to be quick to come talk with me about it and not hold it in. I am so proud of him for that. He hangs out with me a lot while older sibs are doing their older sib stuff together, so he and I have a lot of fun watching movies together and talking.
I talk a lot about my kids, but I have given my life to raise them, to educate them and to love them. They are huge in my life. I am so thankful for them and the investment they have made in making me a much better Mama to them. I am still learning and working on it, and we are all learning and growing together.
They truly are my favorite “co-laborers” in the faith.
“Hey Mama…will you take us bike riding tomorrow in Chattanooga? It is supposed to be beautiful and then rain is moving in for a few days and we need out of this house!” This is what my kiddos asked me Wednesday morning. And this is what I would love to do with them!
Bike riding along the river in downtown Chattanooga has become one of our favorite activities. I can cruise along in my power chair and the kids can ride! My chair will last 10 miles before it runs out of battery which gives us a full day. You can rent the bikes very affordably and we love to pack a picnic. It makes a wonderful day!
And then…I wake up feeling pretty cruddy. Pain and spasticity have taken over in the night and I am struggling just to get blankets off of me and to sit up. What to do?
This scenario happens more than I wish: Plans are made. Excitement is generated. Mom wakes up feeling awful. I have no control over my body and how it will feel, but the guilt over disappointing my family, and being the reason plans get cancelled is heavy.
Here is what I have learned over the years….
Try anyway. Start with one step and then take another. See how far you can get. That’s it.
When you are in a lot of pain, what you WANT to do, is to go curl up in a ball and stay in bed. The last thing you FEEL like doing is to go transfer over and over and be away from the comfort of your home. But what you NEED to do, is try.
I will always start with saying to my kids, “Let me go take a shower and see how I feel after that okay?” The hot water can calm my pain levels down and loosen my spasticity so that is my starting place.
After my shower, I get dressed. That takes energy…especially when you are fighting your body so. I need some energy for the rest of my day if I am even going to drive safely. Neurological fatigue is nothing to mess with and I am not joking when I say I have had to pull the car over before and take a nap from spiked pain levels.
After I get dressed, and don’t feel like I need a nap, I make my decision. If I am able, in any way, to push myself to be out for awhile, then I do.
Many times, this can depend on the activity. For example, a day of shopping is in and out of the car over and over and over. That is a LOT of transfers! That wipes me out very quickly and increases my pain levels. So, on days I feel really bad, and the kids are just wanting out of the house for awhile, I would suggest a short version of shopping (y’all, pick a couple stores), or go to the mall or a shopping center where I don’t have to load and unload so many times. Or, I will suggest we go to the park or something where they can get fresh air and a change of scenery, but I am not having to do as much work to be out.
A day of bike riding, is actually pretty therapeutic for me…especially on days I feel rough. It is fresh air, sunshine and miles of just rolling along. The kids are ahead of me riding their bikes and there is much time for me to just have the quiet time to think, pray, engage and smile and talk to other people out enjoying the day, take in the beautiful scenery and listen to the birds sing. Yesterday, a dear friend called and we were able to chat and it felt like we were on a walk together. The kids and I have our spots we like to stop at and just hang out at and enjoy.
I always know that a long day out typically means another rough day for me the next day; but, I also weigh that out and plan for it. A day out today absolutely means a low key day the next. I have learned that if I push myself for days in a row, I will pay for it by having to be in bed way too much for a couple weeks and that is no good for my family either. Balance is necessary.
I decided long ago that I cannot change this life I have been handed. And if this is my life, I don’t plan to stop living it. Rough days are rough…no doubt about it. But what would be even rougher on me, is to stop living life with my precious children.
Truly, there are still times when I have to say, “I’m sorry guys…maybe tomorrow”…because I just can’t get it together and need to be home. But I make myself be very honest, disciplined and challenged to make sure that is true. It is too easy to let my body be the boss so I keep myself in charge of those choices and don’t allow myself to take the easier way out. I owe that to my children!
Yesterday, I woke feeling awful. I showered. I got dressed. I decided I would take the kids bike riding. We went all day. It was so beautiful. So relaxing. Such a sweet day of memories, ice cream, people watching and Caleb was even able to join us after work since he was close by. I am so thankful that I was able to go. We came home. I made supper. I was in my bed by 8:00 exhausted, in pain, and very content with our day.
Today it is raining, I feel awful and I can stay home nice and cozy in my home…and very probably my pajamas…all day…and can rest from yesterday. The kids will be tired too and I expect us all to enjoy our “pajama rainy day” today. Oh the perks of homeschool!
I cannot speak for everyone that deals with chronic pain in their lives, but for me, this is what works. This is what enables me to not only live my life, but to enjoy it. That matters!
Try anyway. Start with one step and then take another. See how far you can get. That’s it. Find joy and challenge yourself to get there.
I was working on a couple new videos for my YouTube channel today and the similarity to what I was “educating” on for spinal cord injuries, and the comparison to real life is too obvious to not mention.
In my 2-part video set, the first video deals with paralyzed core muscles and how that makes us very off-balance because we lack the core stability to keep us upright. It is hard to find your new balancing point and you definitely have to have some external supports in place to be safe.
Does that sound like life at times? Uhm…yes!!
Life can be very upsetting. It can topple you over in a second. You are left very unsteady, and you aren’t even sure which direction you need to head. You are so off balance, you can’t even function in the simplest of ways.
This is where you need external support. Physically, for me, that means special seating and cushions and the angles of my wheelchairs. But spiritual and emotionally, this means our precious Savior and dear friends that love Jesus supporting and rallying around you. It stabilizes. It allows you to stay out of bed each day.
The second video has to do with having a “quad gut”. It happens when your core is paralyzed and there isn’t anything you can really do about it.
And have you ever felt that way? Circumstances that happened that you didn’t choose? You didn’t want? But it happened TO you?
What are you doing to do? Hate it? Detest it? Fight against it?
Or are you going to release whatever it is and just learn to embrace the “less desirable” areas you had nothing to do with and are powerless to change them as a part of the new you?
This new you can hold your head high. Not because your body (or life) is perfect, but because you have learned to accept things you cannot change and live in peace with it.
I hope as you watch these two very “physical” videos, you will come away with the same comparisons to our spiritual and emotional lives and how balance and acceptance are choices that only you and I can make.
My morning begins with trying to roll over first. Then some stretches of my upper body, my fingers and my hands. After I am loose enough to be able to sit up, I do my leg stretches the best I can.
Next on the agenda?
If it is a bowel program (another subject) and shower day, I get that process going. That is about every other day. I will get my supplies, do my thing, get finished, go shower, and either get dressed in my wheelchair (which takes a long time) or I come back to my bed and get dressed. It all depends on the day, the outfit (some are much easier to get on and off), and how spastic my body is or not. That whole morning process takes me about 2 hours or so. And this is why I don’t shower on the days I have an early appointment!
However, on the other days…the days I get to just wake up and get dressed (much easier and shorter mornings!), I have this routine! It saves me a transfer and has made my mornings to be a little easier. I save time and energy!
Sometimes I wonder why I post videos and write blogs. I know it is therapeutic for me to just write and talk things out…on paper or video. I know it is because I just want to help others. I have learned so much about how to live my life in a wheelchair from other YouTubers, that I wanted to give back also. When I get comments or email from other people with disabilities or from occupational and physical therapists telling me I am helping them, that just thrills my heart!
But this time…I made a video and someone reached out to help me!!
It was about transferring into my bed at night, and my friend Roberta, who also uses a wheelchair, wrote me. She told me about this item on Amazon called a Transfer Sheet ( I had never heard of this) and she told me to buy one and it would be a huge help.
I bought one that day! They are around $25. Was she ever right!!!! It is wonderful!
I have a little ritual I seem to go through every night to get my body ready to sleep. If it is a good night, I am able to fall asleep very quickly. If it is a bad night, I tend to doze off quickly but then wake up within the hour with nerve pain and stay awake a lot. Making sure my spasms can get calmed down, using my CBD oil and staying warm under my electric blanket are all ways that help my body calm down so I can rest.
A perfect night…
I transfer good.
My spasticity isn’t bad and that allows me to position my legs and body much quicker because it isn’t fighting me.
I can get on my right hip and rolled to my stomach without triggering a full body spasm.
I enjoy my stomach stretch for about 10 minutes and then roll on my left side, cuddle my pillow and go to sleep!
Those nights only take me about 20 minutes from transfer to sleepy time.
But, most nights just aren’t that perfect..especially in the winter. Tonight’s total time took about 40-45 minutes, and if I would have changed into my pajamas, that would have added another 15 minutes easy the way my legs were fighting me.
It isn’t pretty and takes forever but I am doing it independently!
I have realized being proud of your accomplishments is not the same as having pride. God created the world and every day He would look around and say that “it was good” and He is not prideful.
Even though I truly dislike the “routine” of going to bed and how long everything takes when I…am…SO…tired…I am thankful for the outcome. I am thankful for the ability to do it. I am thankful for my independence still.
Let’s all look at our challenges as opportunities for accomplishments that we can be thankful for.
I share much about my life because I want to be real and open. I don’t share everything because at times it involves more than just me and discretion is necessary. This doesn’t make you unreal. It makes you real mannerly and respectful to other people’s feelings.
So, in a weird vague-like manner that I will apologize for upfront, I will simply say that the year 2020 was again life-changing for me. It has not been a bad year, but it has been a year full of a million emotions. It has been a year of, once again, falling into the arms of my sweet and precious Jesus – many times weeping and even some wailing! It has been a year of trying to keep my nose above the water and just. breathe.
It has also been a year of unbelievable miracles! It has been a year of overwhelming support of dear friendships and even strangers! It has been a year of watching God move on my behalf…over and over and over. It has been a year of comfort. A year of provision. A year of trusting and obeying. A year of waiting on the Lord and Him guiding my path. A year of courage. A year of strength. A year of being pushed past what I thought I was ever capable of.
In Joshua 4, God told Joshua to set up 12 large stones.
And those twelve stones, which they took out of Jordan, did Joshua pitch in Gilgal.
And he spake unto the children of Israel, saying, When your children shall ask their fathers in time to come, saying, What mean these stones?
Then ye shall let your children know, saying, Israel came over this Jordan on dry land.
For the Lord your God dried up the waters of Jordan from before you, until ye were passed over, as the Lord your God did to the Red sea, which he dried up from before us, until we were gone over:
That all the people of the earth might know the hand of the Lord, that it is mighty: that ye might fear the Lord your God for ever.
In my phone, I have kept a list all year long of my “Rocks of Remembrance” where God showed up over and over and over. I added to that list again today. That is my 2020. It has been my Rocks of Remembrance year.
I have no clue what God has before me in 2021. I feel my word for they year is DISCOVERY! I have no clue what those discoveries will be. My prayer is to discover even more of Jesus and the precious life He has set before me.
If that is accomplished, everything else will fall into place.
It isn’t because I can’t “do” a lot of chores. I can. There are a lot I cannot do, because I can’t reach them. But, there are still many I can do. So it isn’t that I am not “able” to do them. The question is…at what cost? What won’t happen, or what now will happen because I did?
The kids are gone for a couple days. I am home alone today which rarely happens. The kitchen and living room were messy and I wanted them neat. No problem. I’ve got this.
Start a load of laundry
Clean off kitchen counter
Tidy living room
Sweep both rooms.
Get to my computer work.
If my kids are home, this is how morning chores go…
Elisha unloads and loads the dishwasher
Macey cleans off the kitchen counters and straightens the laundry room
Audrey gathers the kitchen trash and takes it out and tidied the main bathroom.
Isaiah tidies the living room and dining room and just recently added sweeping both of these rooms because he can’t stand to watch me sweep (which was my chore).
Caleb works full time and does full time college in the evenings so he keeps up his own room and laundry and does whatever odd jobs I ask him to do randomly. He is also responsible for getting the weekly trash to the road for the garbage truck.
I am the foreman and keep track of this wonderful clan 🙂 I also do the meal planning, grocery shopping, and much of the cooking!
Within about 20 minutes, this house is tidy and ready for the day! It is a smooth operation and these kids have got their game on!
So…today? Well, it wasn’t smooth at all! My cold has me weaker, my spasms kept getting in the way, and that 20 minute job lasted almost 2 hours! I was tapped out the rest of the day and tonight I hurt all over like I have been to the gym! 🙂
My house does look much better so it may have been worth it.
I just want to say…kids, you are amazing. Thank you for how well you help keep this ship sailing around here! I love you!!
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.
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.
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.
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.
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.