Taking time to relax and rest. After a week of being sick as well as dealing with the daily issue my hubby and I are enjoying visiting our family and relaxing in New Port Beach,Ca. This will be our view for the weekend. Hoping this will bring more healing into my body. Enjoying some of the wonders God has given us!
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.
A 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 S1-S5.
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.
Each day is different. Some days are great in that the pain is down usually around a 3 to 5 on the pain scale. Other days no matter what I do the pain remains high at about 5 to 9. There is no reason for it as my medications remain the same. Why? This is the one of the questions that plague me. I am learning to deal with so many things, but the one big thing is letting go of the why and learning to live in the now. This is beyond difficult.
Some days it feels like God is gone and has left me. He hates me. He not only took the use of my legs, but has allowed me to continue to hurt at levels that are unbearable at times. I have become isolated from those around me as their lives cannot accommodate someone like me who is slow moving and unreliable because the pain. My only communication with “friends” is often via things like Facebook or Instagram. It is a lonely place to be. The reality is people don’t just want to sit around watching TV, playing a game or talking with someone who is hurting because we are not fun to be around. Besides their lives don’t have time for people like us who are in constant pain and disabled.
Learning to let all of that go and see the “bright side” is not easy. Realizing that God is still there and He really does love us seems like a dream. For me, deep down I know that God is real and He loves me. The enemy loves to sneak in and make me doubt everything. So often questions like, can my family still love me the same? How can I still be whole? How can I take care of my family as I can barely take care of myself? Each day seems to bring new questions and doubt. It sucks. It doesn’t help when the people you love are constantly telling you things like- Pick up you feet, bend your knees, don’t bend over and pick things up. As for me, I already know my body doesn’t work right I really don’t need to be reminded constantly.
So how do I let is all go? I don’t know at this point. Each day all I can do is pray constantly and do my best to move forward. With God’s help it is my hope that I will find a purpose for my life and I can learn to let all of this go accepting what is happening to me.
As I continued to hope that the pain would get better, I realized that wasn’t going to happen. Because of the pain I had to miss yet another outing. I did not get a chance to go out trick-or-treating with my 11 yr old daughter and husband, but instead I stayed home with our 15-year-old and his friend who were handing out candy.
My pain remained fairly high at about a 7 most of the evening regardless of how much medication I was able to take. Of course I have to be very careful, as the potential to over-dose is high so there are times that I have to just deal with the pain. Even so, my heart ached to have to miss yet another outing, but at the same time I was thankful. Because I hurt I got to stay home and hear the laughter joy that was coming out of the other room.
Our son and his friend were playing video games, eating pizza, joking, and laughing. Sounds that I wish we heard more often. You see, our son often is isolated in his room programming his computer, playing computer games, or listening to/playing music. He is the typical teenager. He does come out and join us for family game night and movies occasionally.
But in the midst of pain, God has blessed me yet again. Instead of just sitting around watching TV and hurting, I was able to be a part of this special moment of laughter and fun. As they both ate pizza and came in for seconds they were pushing each other and making jokes. Listening to them bought smiles to my face. Rare moments like these are cherished even when physical pain is makes it difficult. Actually listening to the joy coming out of the other room helped reduce my pain. I am so thankful for these little moments that God keeps giving me. Continue reading
Having lost the feeling in my legs and living in pain made the thought of dancing seem impossible. My husband and I attended a Halloween party over the weekend. I was just excited and happy to be there as last year I was in the hospital recovering from one of the multiple surgeries.
As I sat next to my husband watching people come into the party dresses as various characters, I turned to find an old childhood friend. She recognized me immediately, we talked and made me smile and laugh. She vowed to get me up to dance. My fear that I was going to be unable to do so set in. How could I dance being that I walk with a walker and I can only feel my left leg? At least my pain level was fairly low at a 5.
I stood next to my husband near the seating area and moved a bit to the beat of the music. Oh, how I missed dancing and moving. After all, I was a dancer most of my life performing in various places over the years. It has been one of my the biggest losses. Loosing the use of my legs, not being able to feel or move is one of the hardest things I have had to deal with. The thought of not being able to stand cheek to cheek with my husband and move slowly to the music help bring my spirit down.
Standing and moving felt amazing. It was a bit scary, but invigorating at the same time. My pain level remained low at about a 5. My friend came over and signaled, “Let’s go.” So I followed her with my walker out onto the dance floor. I began to move to the music. It felt great. I had to keep looking at my feet as without looking at them my brain has no idea where my feet are in space and I will fall over. I held on to my walker and began to move my feet and body. It was an amazing feeling. I never thought I was going to be able to do this again. But yet again, God blessed me with a special gift.
For the brief moment in time I felt great. My pain was low, my legs held me up and moved to the beat. I smiled and felt alive. I will cherish this moment as I don’t get many of them. So thankful for my blessing. Lord, thank you for all you give me. I still struggle from day to day as my pain fluctuates. I only hope that as I continue to go to physical therapy that my legs with get stronger and work better. I hope that I will move from a walker to a cane. That I may regain some mobility and self-worth. I hope that my pain level will drop so that I can enjoy more of my life. For now all I know for sure is that God continues to be with me and watch over me. He continues to help heal me. For this I am blessed.