Each morning I wake up is another day on my crazy journey, but most
importantly it is a day to “keep moving forward.” Although this may be true, it
often gets lost in the frustration of living with chronic illness and pain. For
me it takes deliberate thoughts of hope and lots of conversations with God to
keep me on the right track. It is so easy to see all the negatives which start
bringing me down. If I continue to let
the negative thoughts in, I find that my anxiety and depression creep up. This leads
to more difficulty controlling my pain and spasticity. This is not to say that
there aren’t real reasons for my increased pain and spasticity, but our minds
are powerful. For example, I know that
when I am over-tired or catching a cold, the spasticity in my legs is much
worse, making it hard to walk because my legs feel like there are 20 lbs.
weights strapped to each ankle and I am walking through thick mud. Let’s face
it, when dealing with a spinal cord injury (SCI) you never know what weird
thing your body is going to do next.
I have found that when my mental acuity is down it is much easier to get stressed and overwhelmed. Getting a good night’s sleep is crucial, but often illusive. For me there are several reasons. Pain being one, other times it is that I cannot regulate my body temperature, and/or it maybe I just cannot get comfortable. I eventually fall asleep but staying asleep it also difficult at times. This is extremely frustrating. I use meditation and prayer to help relax me so I can drift off to sleep. Prayer continues to help me in all aspects of my life.
Sometimes days are just crappie and other days are great even amidst the
spasms and pain. Lately, I feel truly blessed because I have had some pretty
good days. Yes, my pain has been out of control some nights, but I have still been
able to the gym and work out on most days, take care of my family, and have
spent time with my mom, my 4 amazing grandchildren, and my smart and funny nephew
who calls me grandma. Being able to take the kids back to school shopping or just
hang out and watch them swim helps put a smile on my face even when I hurt. I
believe that God is watching over all of us and He sends little gifts that get
It is not always easy to stay positive amid dealing with life. Everyone has
a story that is running through their head. We all have things about ourselves
that we are not happy with and want to change. Maybe it is losing a few pounds
or asking for that raise. For me, it is regaining my ability to walk with
balance, lowering my pain without increasing opioid medications, and being able
to take care of my family. It really can be overwhelming, but I believe finding
the positives in the people and things around you can help make the situation
One of the hardest things I deal with is pain. Chronic pain interferes with
life on so many levels. It zaps your joy and energy. Physically it makes it
hard to want to move let alone get out and do any physical activity. For me,
the sensation that my skin is being stretched to the maximum and then ripped
apart is enough to drive me crazy. Then my legs decide they want to burn like
you have been bit by a thousand fire ants. Dealing with this daily is unbearable
at times. It causes me to feel down and I question my self-worth. I have sat
and cried and asked God, why does He keep allowing me to hurt? Why did He give
this to me? I have cried out and told Him that I cannot take much more. It is
difficult to find anything positive when you hurt, but there is so much to be
Being chronically ill makes doing many things more difficult and scarier at
times. Just getting yourself bathed and dressed may drain you. So, the thought
of going out to the grocery store or a movie is daunting. Yet, opening my eyes
every day is a blessing. It means I get to have another day to enjoy my family to
the best of my ability. I am no longer have the ability to run and play tag
with the kids, I cannot jump on a trampoline, nor can I help in the yard much,
but I can play a board game, do a puzzle, or teach my family to paint and
create things, and I can certainly love them.
Of course, there is so much more that I can do. It is often difficult to feel
good about yourself amidst the pain, but with prayer and the help of my family
to remind me I can usually get back on track. Granted there are days where no
matter how hard I try I cannot seem to kick the bad. On those days all I can do
is cry. Yet there is even a positive on these occasions as well. Sometimes
getting all the yuck out with crying helps bring the positive light in. I
remind myself daily of my motto, “keep moving forward”, even on the days it
seems like I am going backwards, because when the fog clears there is often
something good on the other side.
When I arrived at the gym Tuesday, I did not think I would be able to do much. Unfortunately, I had a rough night. My pain was at a 7-8 on the pain scale. The skin on my back felt like it was stretched to capacity and ripping open. I used my VR for about 30 mins. My pain was still fairly high so I also took extra meds and prayed. Eventually, I drifted off to sleep. When I woke up on Tuesday, my body was weak and tired. I got myself ready and headed to the gym any ways. I do my best to never miss a session because I know the only way can improve my balance and coordination is by continuing to work hard.
I was able to do 3 sets of 15.The first was I did not need my trainers assistance.
Another first-no assistance needed. My form is improving as well.
I was pleasantly surprised as I went through my workout. I am thankful for the strength God continues to give me each day. The hard work is beginning to pay off. My proprioception, balance, and feeling in my legs have all improved. This means that new neuropathways have been created. My motto “Keep moving forward.” helps to keep me focused on the prize, walking with a cane or no assistive devices.
spinal cord injury (SCI) happens when there is damage to cells in the spinal
cord. It causes a loss of communication between the brain and the parts of the
body below the injury. Some effects of a SCI may include low blood pressure,
inability to regulate blood pressure effectively, reduced control of body
temperature, inability to sweat below the level of injury, and severe chronic pain.
Our spine starts at the Cervical spine is from C1-C8, then the Thoracic Spine
is from T1-T12, the Lumbar spine is from L1-L5 and the Sacral spine is from
The spinal cord is the
bundle of nerves that transmits nerve impulses from the brain to the rest of
the body and vice versa. It is 17 inches (43 cm) long in women and in men it is 18 inches
(45 cm) long.
It is a fragile cylindrical structure of nervous tissue that extends from the
base of the brain stem (C1) to the sacrum (S5). It contains motor and sensory
nerve fibers that sends and receives nerve signals to and from all parts of the
body. The sensory nerves control involuntary functions of the body such as
breathing and our heartbeat. An injury to the spinal cord disrupts the normal signals
rendering the patient incapacitated starting at the first vertebrae below the
area of the damage.
The most common causes for spinal cord injury are:
Sports and exercise
Violence such as gunshot wound
Alcohol related accidents
Infections and disease
There are two types of spinal cord injuries: complete and
incomplete. A complete spinal cord injury would result in permanent damage to
the spinal cord. A patient with complete damage has no control of his body
movement and may be bedridden. An incomplete spinal cord injury is partial
damage to the spinal cord where the spinal cord retains some ability to convey
messages to or from the brain allowing the patient some sensory activities
below the site of the injury.
Often spinal cord injury results in a loss of function, such as the ability to walk, loss of control of the bladder, bowel or both. Patients often have trouble walking, have numbness, loss of sensation, have difficulty regulating body temperature, and live with chronic pain.
As I go through this journey, I have to remind myself of where I have come from. Two years ago I was in a hospital recovering from 4th surgery in less than a month. I could not feel much below the waist and I could barely take 20 steps without being totally exhausted. My pain was much higher, and I had to take higher doses of medications on a daily basis. Through a lot of physical therapy and working out on my own I am making progress.
As you can see in the videos, I still have difficulty and need assistance to complete some of the exercises. But does that really matter? No, the important part is that I am at the gym and I am doing things I never thought possible. Our bodies are amazing, and I truly believe that as I exercise, I am helping to create new neural pathways
My Rt ankle and leg/glute continue to give me difficulties. Even with my foot strapped in my foot wants to drop forward. My knee also wants to turn in.
My left leg/glute is stronger, but still requires my foot to be strapped in.
My knees continue to have the problem of hyperextending. This is why I do not straighten my legs completely.
Exercises that require me to know where my leg are when I am not looking at them (proprioception) are super challenging and often require my trainer to assist me. Although this true, there have been vast improvements like; I can walk behind my walker or a shopping cart without having to look at my feet continually, I can stand and give someone a hug without falling over, I can stand and cook a meal without having to stop and look at my feet every 10 to 15 secs., and I am beginning to be able to take a few steps without using any devices. Pain or no pain, I am grateful for every day I am given. I have been blessed with an amazing family who stand by me each and very day. It is my duty to Keep Moving Fortward!.
There are so many old saying that pop in and out of my head almost on a daily basis. Things like “treat others the way you want to be treated” or “remember you never know what the other person may be going through”, or my favorite “Love one another as I have loved you.” As I navigate life with the added pain of being disabled, it is appalling that people have to be so nasty to each other instead of showing each other love and compassion. Don’t get me wrong there are still some very kind people out there, but lately I have had my fill of mean people.
Recently on one of my ventures out, I pulled into the handicapped parking that was available. Before I could get out of the car an elderly couple approached the car and told me that I needed to move. “You’re young and can walk, this is for people who need it. People like you who take their parent’s car and then park close because they are to lazy to walk are disgusting.” I proceeded to open my car door, get out and side step to the back door and retrieved my walker. The look on their faces was priceless. No apology they just stomped off. I don’t think they would have been to happy if I treated them the way they had just treated me.
This was not the first time I encounter this type of behavior. I have been honked at as I am crossing the street because I am going to slow. While in the grocery store people get annoyed when I am moving to slow as I walk behind the basket. As they have passed me I have gotten comments like, “It’s about time” or “If your going to be that slow use an electric cart.” That is not showing love or compassion for one another.
It really is upsetting and sad that people cannot treat each other with a little bit of compassion. When you see someone struggling to open a door into a business,why not stop and help them instead of continuing to play on your phone? or When you are at busy food establishment and you see someone with a walker or crutches why not make sure they have a place to sit while they wait? Things that are so simple seem to be difficult for people these days.
Where has all the compassion and love gone? I am not sure, but I know the only thing I can control is me and my behavior. So for me I choose to do my best to be compassionate and loving to others. Maybe by continuing to show positive actions others will be reminded and begin to join in. Loving your neighbor and being compassionate towards others may be just what this crazy world needs to get back on track.
“For people whose spinal cords are injured in traffic accidents, sports mishaps, or other traumatic events, cell-based treatments have emerged as a potential avenue for encouraging healing. Now, taking advantage of advances in 3D printing technology, researchers have created customized implants that may boost the power of cell-based therapies for repairing injured spinal cords.”See the full article by Dr. Francis Collins in the NIH Directors Blog