Enjoying the outdoors and cooler weather in Big Bear. Taking time to seize the moment when my pain in on the low end for me (about a 4) and watching to make sure I do not over heat and cause my symptoms to flare.
Not being able to regulate my body temperature has made getting out more difficult. Because I only sweat on my face and neck my body cannot cool itself which poses the risk of over heating and heat exhaustion, so staying cool and drinking plenty of water are a must. Then there is the opposite issue as well. My body cannot tolerate over air conditioned places. Both extremes cause my body to spam and burn more, which of course, causes my pain to increase. Oh, the joys of living with a spinal cord I jury.
The best thing I can do for myself is to take the opportunities that present themselves and keep moving forward. At the same time, learning to allow myself down time when my body is in pain without beating myself up. I still have work to do in this area.
Progress is continually happening even when we think it is not. For me, I never know when my body will amaze me because on most days I deal with disappointment and pain. Yet days like yesterday at the gym, where I did 100 squats and finished off walking on the treadmill, sometimes happen. Staying focus and positive, although hard, is what I do my best to do. Before I begin my workouts I often say a quick prayer, thanking God for all He has given me. I also ask Him to give me strength so that I can continue to heal and do His work by spreading the word about all He has done and continues to do for me. Throughout this ordeal I have had very low moments, but I have remained strong in faith knowing that God is with me even when I feel alone. He has given us one of the greatest gifts our ever healing bodies.
Working out with God by my side is incredible. Even when I am tired and hurt , my body can do amazing things. I will continue to keep pushing myself and improving my overall health in the process. Meanwhile, the struggle to regain my ability to walk independently is real. Below are videos showing some of the exercises I do to help restore my broken body.
This works my glutes, hips, core, and biceps. It also works on my balance. This type of squat with the ball creates resistance and gives me more stability. We immediately noticed my knees did not buckle nor did they rotate in.
I started with this type of squat. We decided to try the more aggressive way as it used more muscles. This still required balance, but not as much as the other system. Just being able to do this-Wow, God is good!
My trainer and I have agreed to add this routine into my workouts regularly as it promotes better core, leg, hip, and bicep strength. I am well aware that my muscle mass diminished since my SCI. I also know from personal experience that it disappears faster than you can build it. My trainer and I are always looking for safe ways to stress my muscles, to engage them more fully, yet at the same time not causing any extra pain. Unfortunately, I often get increased pain the day after my workouts so learning to cope with the pain without having to increase medications is also involved.
I am so thankful for all the progress that I have been able to make. I truly believe that none of this would be possible without God by my side. God answers our prayers in His time and not ours. It is often hard to be patient, but when we give it all to Him and let God take over it is amazing what can happen. Each day is another given to us as a gift and is best not wasted, So for me I choose to “keep moving forward” and finding the positives in the things around me even if they are small.
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 feel brighter.
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 sad. 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 thankful for.
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.
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. Then I find that I have more difficulty controlling my pain and spasticity. This is not to say that there aren’t real reasons for increased pain and spasticity, but our minds are powerful.
Each day is an opportunity to “keep moving forward” and to seek out the positives in our lives. It may be difficult to see at times but taking the time to stop and deliberately seek out the good can help push us forward. God is with us every step of the way, even in moments when we feel alone. His hand is reached out to all of us waiting for us to grab on. Living in chronic pain can rob us of the precious moments, but we can cease the good even amidst the pain.
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.