The Pain Study

I recently posted on Facebook that I had been chosen for a research study from the University of Washington to deal with chronic central nerve pain for those who are employed. Central nerve pain (or neuropathic pain) is caused by damage to the central nervous system, which is why you must have a brain injury, MS, be an amputee or have a spinal cord injury. My post created a curiosity for what this study will be about, and so I thought I would share a little more here!

The criteria are specific and the reasons for that are:

  1. Those are the most common categories that deal with chronic/phantom nerve pain.
  2. Being employed makes typical pain management harder to do.

Let’s unpack these two reasons:

Chronic pain is technically defined as pain that has lasted longer than 3 months and simply doesn’t go away. It may be better or worse some days, and it can be managed with different treatments, but it is always there. Those with brain injuries, MS, have had amputations or a spinal cord injury are all categories whose neurological systems have been compromised. Our neurological system is an intricate and vast computer system that operates our entire body. As you can imagine, when it has damage, it affects so many aspects. Nerve pain is not observed, but it is certainly experienced. It can be specific at times, and other times it can ride the electrical circuit of your system and wreak havoc. These specific categories for this study all have high incidences of chronic and severe nerve pain.

Since the categories were chosen specifically, then why the employment part? This is what the study is going to focus on. Professionals help individuals manage their nerve pain through medication, mind control, activity, rest and other avenues that can be utilized at times when pain levels increase. For example, if I have had a fun day away from home, I always know that the next day will be higher pain. The multiple transfers in and out of my vehicle, the jostling of uneven terrain that makes my body get tossed about, the long hours of sitting in my wheelchair and the act of balancing my head and shoulders that is so fatiguing are areas that raise my pain levels significantly. Since I know my pain levels will be higher, I have to take a “low key” day the following day.

“Low key” means a rough morning getting ready because my body will be pretty spastic and difficult to move. I will require more sleep because of the fatigue, a longer morning in bed because my body really won’t be as anxious to get in my wheelchair, probably a hot shower or electric blanket to calm my spasticity down, a day at home where I can lay down multiple times as needed or get into my bathroom often (high pain makes my stomach hurt) and an early bed time to get back out of my chair. These are just the physical manifestations of high pain days. They emotional side is that I am grumpier on these days. It isn’t that I am hateful, it is just that when I feel really bad my fuse is MUCH shorter and so I just seem to trigger quickly. I apologize to my kids a lot on these days. Cognitively, I struggle to focus and always feel I accomplish so little of what I wanted to get done as I mentally moved through molasses all day long!

As you can imagine, being employed with chronic pain can have severe consequences for work experience. Chronic pain is a huge factor in why many people are truly not able to work and be substantially employed. Their minds are willing, but their bodies fight them daily. It makes for a very difficult and discouraging work experience. When you are trying to work a job to pay your bills, it is not so easy to just go take a hot shower, or stay in bed all day, or even find other activities to keep your mind engaged and rerouted so as to not think about your pain.

This specific study will be working with professionals who are choosing the suitable candidates to test online treatments and pain management that we will go through and be taught how to self- regulate and manage our pain through these new methods….even AT THE WORKPLACE!

I got chosen, I match the criteria they needed, and next week I will have my initial online therapeutic session. It will last for 8 weeks, and I am praying it helps relieve some pain for me!

Thank you all for sharing my excitement about this and for praying for me!

Alicia

12 Years Paralyzed…

I remember in the early days, I would sob thinking there was NO way I could live like this for another year…let alone the rest of my life. My doctor had me go to the license bureau for a handicap tag for my car and the lady stamped a 5 year renewal stamp on it and I started crying. “5 years?!! Why did you say to renew in 5 years? I will NOT still be paralyzed and even need that stupid thing in 5 years.” I didn’t speak those words out loud, but they were being screamed in my head as tears rolled down my cheeks.

Yet, here we are. Today marks year #12. Some days, it feels like I have been rolling my entire life, and other days, it seems like such a short time ago that my daily life was much less complicated!

I have spent this week at my Grandma’s. I always struggle some emotionally this week as my mind seems to “remember” not just the day I was paralyzed and my life turned upside down, but also the time before I was paralyzed. It is a mental battle just processing all of those memories and balancing allowing myself to take this time of the year to grieve my loss, while at the same time, not allowing myself to wallow in a pit of sadness and self-pity. So, the younger kids and I took spring break and came to my sweet Grandma’s house. Sometimes a girl just needs her Grandma!

My word for 2021 is “Discovery “ and as I have had time to think about some random things today, I thought about things I have discovered the last 12 years as a woman with a disability.

1. I would love to go back and whisper over and over into the ear of my younger self – that I would be alright. I was pretty sure my life was over, but it wasn’t! God wasn’t finished with me. It took a couple years for me to reach this place of discovery.

2. I have discovered who truly cares. It is those who actually show up in your life when your days are the darkest and know to just be. It isn’t what they do, but it is that they are just there for you. Discovering this is both a sad and joyous process. It is sad for those you thought cared for you, and it is happy when you see how much others care for you.

3. I have discovered a network of amazing people with disabilities whose support, tips, encouragement and challenges have led me to a unique tribe of “my people”. They get it. They live it. They know it. They understand nerve pain and spasms, wheelchair lingo, bladder and bowel programs, wheelchair parts and repairs, and the frustration of a lack of accessibility. Since when do you and a stranger ask each other questions for tips on bowel programs?!! Really?!!! Yep. In our “tribe” these conversations are quite normal…and helpful!

4. I have discovered how little understanding there is about spinal cord injuries in the general public and general medical practices and educating the masses has been a calling for me I really enjoy. I hear positive feedback from my disability “tribe”, but also from brand new injuries, OT’s, and PT’s which is what really excites me!

5. I have discovered how perfectly normal my disability is to my children and how easily they interact with others with disabilities. I am SO thankful that has been a result of my paralysis. My kids see the person – not their abilities. The world needs more of that!

6. I have discovered that I no longer need to prove my “value” to give people the perception that I wasn’t as disabled as I really was. I was uncomfortable with that word and I was sure everyone else was too so I worked very hard to be as “undisabled” as I could possibly be. I learned, however, to embrace my disability as just a part of me. It is not something I have. It is who I now am and I am very comfortable in my disabled skin.

7. I have discovered that aging with a spinal cord injury is not very easy. Each day seems like a few more little nerves die off or get weaker and my incomplete injury just gets a little less incomplete. Secondary complications plague you a little more the older you get. I am only 43 so I am NOT old, but truly, each year seems a little more riddled with doctor visits, health adjustments and some new normals.

8. I have discovered that doctors CAN be trusted again. I had my doubts after I felt like I fell through so many medical cracks, but I have been blessed with an amazing health team who care about keeping me at peak performance and I am so thankful for that.

9. I have discovered that it really is okay to ask for help, it is okay to get devices and aids that can make daily life a little simpler, and it’s okay to get attendant care as needed. It doesn’t make you weak, and you do not have to try to “will power” your way through everything. It’s okay to make activities of life simpler so that you have more energy and time to enjoy that life!! Being in charge makes me the decision maker, but utilizing resources to make my life a little easier is wisdom.

10. I have discovered that fearing certain parts of my future is ongoing and must be turned over to Jesus on a weekly… some times daily… basis. I want to be a good steward and plan for things in my future to live independently as long as possible, but I don’t want to live in fear of the “what-if’s”. For me, peace is making wise choices to prepare but then to turn it all over to the Lord. He loves me. He will not leave nor forsake me and so I just read in Him.

11. I have discovered that things I thought I could never do, I can do. It may look different. It may function different. It may take me forever to do it. It may take my tribe helping me, but I figure out a way to accomplish it. A manual chair is now too difficult for me to push because of neurological weakness,unless it is just super flat, so I went to a power chair! As I have lost arm strength, I have discovered new ways to hold things, open things, lift things. I have found adaptive resources that help and again, figure it out. It is almost a game I play of “okay, how in the world can I do this now” and a lot of thinking outside of box and researching and asking other people with the same disability how they do things – from personal care nobody sees all the way to public outings with new problem/solutions that need solved. I am so thankful to live in a country with so many resources.

12. The greatest discovery in the past 12 years, is my walk with the Lord. I lost much of my bodily functions and am pretty weak physically, but… it changed my life spiritually for the better and I have never felt stronger. And for that, I would NEVER get rid of my paralysis!

Today, as I “remember”…yes, there will be a few tears. Life is not easy and I can grow very weary with chronic pain and just a daily struggle to function at times. For me, those tears are just missing those easier days “before”.

But… there will be lots of laughter, memories made, friendships enjoyed, and I will get through this day like every other day – in the strength of the Lord and His grace to face another year. And it will be a good day!

Thank you all for loving me and following my journey. Your support and encouragement mean so much to me! God uses you to help me and I am thankful!

My Sweet Children

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.

Practical Tips for Chronic Pain & Activities

“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.

Ice Cream on the Bridge
Happy that big brother joined us!
Starbucks Patio…one of our happy spots.

Balance…Stability…Things You Cannot Change

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.

Trust me, the rest of your life will thank you.

Video 1: “A Paralyzed Core & Finding Balance

Click to Watch

Video 2: “Quad Belly/ Para Gut – What Is It?

Click to Watch

Getting Back To This Blog!

It has been a difficult couple of years and this blog has taken the hit of it. I am ready to get back here and up my game again. I have continued to write, but it has just been private. For me. Maybe one day, I will share more, but for now, that is how it just had to be. I appreciate all of you being patient with me.

I am kicking off a new look for this blog, upping my YouTube channel activity (you can check my channel out here!) and will probably try my hand at connecting all of this with Pinterest also! I am very excited and ready to roll (pun absolutely intended)!

Alright, here is the new YouTube intro video. Enjoy!

Alicia

Quick Tip To Make Mornings A Little Smoother

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!

Here is what I do:

Amazing Transfer Sheet!

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 will let the video show you the rest!

Now I Lay Me Down To Sleep

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…

  1. I transfer good.
  2. My spasticity isn’t bad and that allows me to position my legs and body much quicker because it isn’t fighting me.
  3. I can get on my right hip and rolled to my stomach without triggering a full body spasm.
  4. 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.

Here is the video of me going to bed last night!

From Manual to Power

My wheelchairs are like shoes. Depending on what I am doing, that determines which wheelchair I will use. Do I use my manual chair which is lightweight, but takes a huge amount of energy and effort for me if the ground is not perfectly level at all times, or do I use my power chair which is much heavier and bulkier yet preserves my very limited energy and spares me a ton of nerve pain each day?

Well, that depends! My manual chair fits in tight places and until my bathroom is finished being remodeled, it is easier to transfer into the shower from. My manual chair is also easier to transfer in and out of. So, if I will be working and sitting in a living room chair with my laptop, knowing I will transfer several times throughout the day, I will stick with the manual.

However, if I am having a skin breakdown issue (like I am for the second time this winter!), then I don’t sit in my living room chair to work all day. It doesn’t provide enough cushion and support and sits too hard on the skin are that has a problem. My manual chair is similar in that once I am in my manual chair, I can only sit in that exact position all day. My only relief from the continual shape my manual chair has me in, is to transfer into a living room chair or to lay on my bed.

My power chair has a LOT of cool features (future video I guess!) where it allows my body to change positions with the push of a button. The back will recline so I can stretch my back without transferring onto the bed. The legs will lift straight out stretching my legs out. It will lift up around 15 inches which allows me the freedom to reach into my cabinets or turn the fan on. It will tilt completely backwards which takes ALL the weight off of my butt and transfers my weight to my back giving my horrific back, butt and leg nerve pain a welcome rest. All of these position changes without ever transferring out of my chair. The downside is that transferring in and out of my power chair is SO much more taxing and hard for me. Why? I don’t know. But it just is.

Since I do switch chairs often during the week depending on my daily physical needs, I thought I would share a video of how I transfer independently from my manual chair to my power chair.

Click on the picture to play video!

CLICK ON PICTURE TO PLAY VIDEO