Continuing to workout

Working hard to strengthen my core, hips, glutes, and quads. I have noticed that my overall strength has improved. Still have a long way to go.

In time, with lots of work I will walk again without assitive devices. And if for some reason that does not happen, then I will still be healthier and stronger.

What is Allodynia

Allodynia is a pain response caused by stimuli that normally does not cause pain (i.e. a shirt touching the area, a hug or a brush of a hand). Temperature and/or physical stimuli can cause it to flare. It often feels like a burning sensation. It often happens after injury to the site (i.e. Spinal Cord Injury or amputation of a limb), like in my case.

Allodynia is a pain response caused by stimuli that normally does not cause pain (i.e. a shirt touching the area, a hug or a brush of a hand). Temperature and/or physical stimuli can cause it to flare. It often feels like a burning sensation. It often happens after injury to the site (i.e. Spinal Cord Injury or amputation of a limb), like in my case. (Wikipedia, Allodynia)

There are days when the thought of getting undressed, then showered and then dressed again seems impossible. The burning sensation feels more like my skin is stretched and swollen to capacity then as I move it feels like it is being ripped open. Of course, this is not what is happening, but when you move at all and the neurological response sends the pain to about a 7 or 8 it makes simple daily tasks seem out of reach.

There are three main types of Allodynia. A person may have one, two or all three types of Allodynia. They are:

  • Thermal allodynia: Thermal allodynia causes temperature-related pain. Pain occurs due to a mild change of temperature on the skin (hot or cold/or both) For example, exposure to heat like being in the sun can cause symptoms to increase.
  • Mechanical allodynia: This where sensation caused something moving across the skin. For instance, bedsheets pulled across a person’s skin may be painful or a towel rubbing the area.
  • Tactile allodynia: Tactile allodynia, also called static allodynia, happens when something touches the skin. For example, a tap on the shoulder may cause pain for someone with tactile allodynia. (Pietro, 2017)

Allodynia may occur due to increased responsiveness or malfunction of nociceptors, which are a type of nerve. They are the “pain receptors” nerves located all over the body which includes the skin, muscles, joints, bones and internal organs. The nociceptors respond to pain and send the signal from the body part to the spinal cord and brain. With people who have spinal cord injuries the signals get confused so a touch can be confused as pain. (Wikipedia, Nociceptor)

There are medical conditions which can increase the risk of developing allodynia, such as: Spinal Cord Injury, Migraines, Postherpetic neuralgia, Fibromyalgia, Diabetes, and Complex regional pain syndrome. (Roland, 2017)

There is no cure for Allodynia. Currently the treatment is aimed and reducing the symptoms. The use of Pregabalin (Lyrica) and other medications like it are used to treat other conditions like spinal cord injuries, diabetes, and fibromyalgia and are now being used to reduce the Allodynia pain along with lifestyle changes such as reducing stress. Getting plenty of sleep and keeping stress low as well as eating healthy can all help reduce the symptoms. (Pietro, 2017)

Personally, I have tired various methods and so far, I have not found the magic mixture. I currently 700 mg of Gabapentin for the nerve pain in my legs which does not help the Allodynia. I have tried Lyrica as well to no avail. I have use Cymbalta in the past, but unfortunately, about 6 mos. in it stopped working. I have also tried Amitriptyline. I began using CBD and I have found that it does help. I currently take 10 mg 5 times per day. I still have horrible nights and am searching for better control. I currently use my Oculus Go when the pain is out of control. I find that after about 10 mins. my pain is bearable and in about 15 mins. I can remove the helmet and begin to move around again.

Living in chronic pain takes its toll on the body so it is crucial to find ways to relieve the pain and allow the body to rest. I firmly believe that I will find the answer. Each day I am given I will keep moving forward even if it is just a baby step. God has continued to heal me, and He gives me strength to face each day. I am blessed to have such a great family who love me and support me every step of the way even on the days I don’t treat them as well as I want to. So thankful for their forgiveness and understanding.

Pietro, M. d. (2017). Allodynia: Causes, types, and treatment. https://www.medicalnewstoday.com/articles/318867.php.

Roland, J. (2017). Everything You Should Know About Allodynia. https://www.healthline.com/health/allodynia.

Wikipedia. (n.d.). Allodynia.

Wikipedia. (n.d.). Nociceptor. https://en.wikipedia.org/wiki/Nociceptor. s

A simple cold isn’t so simple

Catching a cold normally would not bother me much, but since my spinal cord injury it causes all kinds of issues. I can deal with the sore throat, runny nose, and congestion, but the extra pain and spasms it causes are unbearable at times, sending my pain soring to an 8+ at times. The overall skin sensitivity is also elevated making it difficult to get dressed and move around.

Most people when they catch a cold are still able to somewhat function and don’t have to worry about loosing bladder function. Unfortunately for me, getting a cold means stronger more severe muscle spams in my back which then trigger my bladder to want to empty. Even if I have just gone it will still trigger the response and I have to make a mad dash for the nearest restroom. Just another fun issue associated with living with a spinal cord injury.

Having a cold also reeks on my spasticity. It increases the muscle stiffness and the rate at which my muscle tire. Most people tend to tire more easily when they have a cold, but they can continue to do things like go to work or pick up a bit around the house. For me, it makes just getting out of bed a massive task. The stiffness in my legs is intense and makes them feel like they weigh 100 lbs a piece. Walking becomes more difficult because my legs feel like they are dragging through heavy cement and my balance is reduced even more than normal.

Being sick with a common cold suck for everyone, but it has much more of an impact on those of us with impaired bodies. From increased pain and exacerbation spasticity it is not just a simple cold. The only way to stop it is prevention. I do my part by washing my hands frequently, staying away from those who appear to be ill, take my supplements drink plenty of water and get plenty of rest. Now all we need is for others to do their part-Stay home when you are sick and do not share your germs.

What causes Chiari Symptoms?

Along with my SCI I also have to be aware that some of my symptoms may be occurring because of Chiari. For me, two of the most common symptoms I deal with is Spinal headaches and vision changes. I always have to be aware that if my symptoms stay at a heightened level that decompression surgery may be necessary.

Take each opportunity

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.

From there to here

Feeling Blessed

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 us through.

Finding the positives

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. .

A day of firsts

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.

A quick note on: What is a spinal cord injury?

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:

  • Falls
  • 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. 

Working to heal my body

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!.

Where has the compassion gone

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.

Virtual Reality (VR) Helps Reduce Pain

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.

Pleasantly surprised with what my body can do

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.

Oculus Go-Helping to reduce pain without taking more meds

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.

Me on my Oculus Go

Moving forward

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.

Working on

the TRX

machine

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.

Simple tasks

take a lot of

effort.

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.

Balance training

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!

Beating my incomplete SCI one day at a time

Beating my incomplete SCI T2-9, C4-C6 and Chiari is feeling thankful.

13 mins ·

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.

The gorgeous sunset tonight. Enjoying the view while navigating the pain and spams. Have enjoyed the day watching my grandkids and nephew hang out and boogie board. So thankful for the special moments when my pain is down. Ugh!!!!Spams and burning. Man it sucks! The pain often interrupts my life in so many ways. Doing my best to enjoy as many moments as possible. God has painted the sky yet again!

Weekend Relaxation

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!

Moments

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.