At about 9:15 pm Wednesday my pain climbing to an 8. I was hanging with the family and my left side just below my shoulder blade began to spasm which then triggered the burning sensation. This was one of those times where the burning rolled down my entire left side leaving me feeling like my skin was being stretched and slitting open. I had taken my night dosages and they weren’t helping much. So with my husbands help I got into bed and placed the VR helmet on and played one of my favorite games Pet Lab.
As I began to play my spasms continued for about 10 mins, but they were not lasting as long and the severity was lessened. I had gone from an 8 to a six . I was immersed in a virtual world of making and train monsters. In Pet Lab you have orders to fulfill. So you take an egg and you follow the recipe on how to hatch the little creature. Once hatched you then take to you mixing room and you add features like change the color of the monsters fur color or had horns. Sometimes you have to increase the little creatures ability and take it to the training room. Once you complete all the pieces to head back to the shop and send it to the individual that ordered it. If you complete the order precisely you earn money which you can then use to buy items for future creature making. As you can tell Pet Lab requires focus.
The focus and immersion cause my brain to change course. The interruption of pain signals helped reduce my pain. At about 15 minutes into the game Wednesday night I noticed that my pain level was reduce from a 6 to 4. At a 4 I was able to take the helmet off, get comfortable in bed and drift off to sleep. I am thankful to have found another tool besides more medications to help reduce my pain. Who knows, maybe overtime the use of VR to interrupt the pain signals will trick my mind to stopping my pain and spasms completely allowing me to reduce the use of opioid medications.
My gym day was a bit different on Tuesday, tough but amazing. I started out doing some of my normal exercises, abs, seated leg press, and seated calf raises. What came next surprised me. First, I did lunges and then I was able to do deep bend squats. I only did two sets of 20 each, and then ended with walking on the treadmill. I never thought I would be able to lunges or deep squats because of my legs are still wobbly and are definitely not as strong as they use to be.
Not easy, but definatley will keep working on these!
Tired but so worth it!
As you can see I am still wobbly. I know with continued work my technique will improve as well as my strength. There is a negative to this and that is I often suffer more spasms and burning the night after as well as often into the next day. Over time I have noticed that the extra discomfort has deminished. I also have to remind myself that sometimes I just have bad days regardless what I do.
Every morning I wake up I am so thankful to have another day, but I know that I will have to deal with the muscle spasms and the unrelenting burning pain. I start my day at 5 a.m. with taking my cocktail of meds.: Baclofen for spasticity, Gabapentin for neuropathic pain, Oxycodone for pain, and 1:1 CBD for pain and spasticity. Throughout the day and evening, I continue to take my prescribed medications, but often at some point during my day and/or night my pain reaches a 6 or more on the pain scale. So to disrupt the pain signals being sent from my brain to my back and legs I use VR (virtual reality). I use the Oculus Go and immerse myself in VR by doing things like swimming with manatees, creating monsters, traveling, meditating or any other variety of things.
So when my pain starts to climb even after I have taken my medications., I grab my Oculus Go, put the device on, and open the program I want and begin interrupting my brain’s pain signals. In about 10 minutes, I notice that the my pain and spasms have diminished. I usually will continue to use the VR for about 45mins. to an hour . By this time my spasms have stopped and my burning is down to a 3 or 4. I can then take the device off and continue with my day or at night go to sleep. Note: At night I mostly use relaxing programs like meditation or swimming with the manatees or dolphins in Ocean Rift.
The Oculus Go is a contained unit. Meaning you do not need a phone or computer to use to use it. This is perfect for me as I use it sitting down or lying in bed because of my spinal cord injury. The more immersive the program the better. Warning: It can cause motion sickness especially the first time you use it. This briefly happened to me in a floating game I tried. I now able to use the game and have not had any further issues with feeling light-headed or dizzy. I have been using my Oculus for about 3 months. So far, I love it and it offers hope to being able to reduce my pain.
Made it to the gym! When I awoke on Thursday I wasn’t sure I would make it. I had a rough night on Wednesday because of pain. My left side spasmed and burned at an 7 to 8, off and on most of the night despite taking my extra medication. When I awoke on Thursday I immediately laid back down because I was dizzy and I got nauseated. After about 30 mins. I was able to get up. I got myself ready and headed to the gym. I still was not feeling 100%, but I knew not working out would slow my progress down.
I started off by warming up on the treadmill for 12 mins. I realize that this is not very long, but for me it is a workout especially with it inclined at 5.0. For safety, my trainer stands by me the entire time. We then worked our way over to the TRX (Total Resistance Exercise) area. I do 4 sets of 12 to 15 reps of squats (sit to stands). This exercise is still very difficult for me. I have to be very cautious as doing any exercise that engages my back has the potential to set off my spasming which then leads to the burning (Allodynia). As you can see below that working on the TRX takes energy and a lot of concentration. My right leg wants to turn in instead of out when I squat/sit.
I then moved on to working on some coordination exercises which engage my brain and muscles. The only way to build new pathways is through repetition and concentrating on what I feel and don’t feel.
Simple leg lift-not so simple for me. Hard to control my legs.
take a lot of
I will keep working on building new pathways and helping my body heal. I am continuing to crawl daily and practice getting up and down off the floor. I really miss things like dancing and running, but I know that with hard work I can get there some day. God continues to heal me and get me through. Without God and my wonderful family none of this would be possible.
Today June 18th, 2019 I arrived at the gym feeling tired and hurting at a 5. I chose to head to the gym regardless of the pain because I knew that I had to push myself. Please note that I do have days where my pain which is caused by Allodynia and spasms is so elevated that I can barely move let alone drive. Gratefully, today was not one of those days. I do find that exercise and moving around can aid in diminishing my pain. By the time I left the gym my pain was down to a 4.
Todays session was balance training. Because I lost my proprioception, my balance, also went out the window. I have been working for the past two years to regain it. Developing new neuro pathways is essential for me. You see, our bodies are amazing structures that even when it is damaged it looks for ways to rebuild itself. I have to really concentrate on every movement as well as noting what I am feeling or not feeling as each exercise is performed.
Squats while balancing on the Bosu ball.
Balanced on the Bosu ball for 60 seconds. I remember the days that I could not balance for more than 12 seconds.
When I am not in the gym I workout at home. I get down on the ground and crawl on my hands and knees twice a day. I also put on 5 lbs. ankle weights and walk around my house for at least 30mins. practicing to lift my legs as high as I can get them. Often it is not very high, but I know every little bit helps. I also do a lot of stretching and eventually I plan on joining a yoga class. Right now getting up and down off the floor is still difficult and I often look like someone learning to walk on stilts.
Each session is different and challenging. Leaving the gym today I felt accomplished and renewed. I saw the progress I am making. Each day God gives me is a day to show Him that his gift is not being wasted. Because I have hope and faith in what God can do I cannot give up. A very wise friend of mind said, ” Speak to your legs daily and tell them they are healed. God , is healing you right now.” From that day on and I have done my best to remind my legs that they are healed and that they work. God is good!
On Thursday June 13, 2019, I went to the pain clinic for another nerve block. Hoping this one actually works. In the past there has not been much success, but when you live with as much pain as I do you are will to try.
Usually, after this type of treatment I am down for a day or two but so far so good. Today the pain has been better ( usually runs about a 5-7, and today it has stayed about a 4-5). Hopeful that this time I get some much needed relief from the spasms and burn feeling that runs down the entire left side of my torso.
The procedure itself is painful but nothing like my daily pain so I am willing to endure it. The doctor first wipes down the area, then he numbs the area/areas to be injected. The 5 injections of lidocaine are not pleasant but tolerable. Next using a fluoroscope the doctor find the nerve to be injected, mine were at T6, T7, T8 and T-9. He finds the nerve by inserting the needle in slowly until it hits the rib bone then slides it ever so slightly into the nerve and then injects the medication which is suppose to deaden the nerve keeping it from sending the signals to the affected area. It usually takes at least 24 to 48 hours to start feeling the effects.
When I woke the morning after the procedure I was still feeling a lot of burning and spasming in the areas of injection. After I got up and moved around a bit the pain has diminished to about 4 overall on the pain scale. This is huge for me. I am was hopeful that maybe the injections worked.
Now at almost a week since the procedure, I do have to report that my pain, especially at night around the 8:00 pm time, seems to increase to about an 8. Even with taking extra meds such a Tizanidine, which has been prescribed, the spasms and pain remain high. I would say that the nerve block did not help. Back to the drawing board.
Overall, I am very thankful for yet another day to be with my family and friends. God has given me so much. I don’t want to waste it.
Happy Father’s Day to all my family and friends. I hope that
your day is filled with lots of great times filled with laughter and love. Have
a great Day!
I also would like to wish my father a heavenly Father’s Day. Daddy thank you, for all you did for me and my brother. I am thankful for all the sacrifices you made and for showing me hard work pays off. Dad you are no longer physically here, but I know you are still with us. You are now one of our guardian angels. I miss you and there are many times that I wish I could pick up the phone and call you for advice. Now, I can only look up and talk to you. I only wish I could hear your voice and feel your hugs. Some day I will again. Some day we will get that special father daughter dance as I too will be restored. Happy Father’s Day in heaven dad.
Lord God, my creator and ultimate father, thank you for each
moment you give me breath. Thank you for all the great men in my life. Thank
you for all your guidance even when I don’t want it, because being I am
stubborn. Happy Father’s Day!