During our time at home

As everyone is dealing with the changing times it is bringing higher stress levels, more anxious moments, which can lead to eating more comfort foods and less activity. For those living with chronic pain like me, it can be a period of increased pain and discomfort.  Yes, rest is important and can be beneficial, but long periods of inactivity, lying around with no purpose or focus, sitting around focusing on our worries can be harmful and often exacerbates the pain. 

I have adopted a few things that may help you as well. First, if my body is really tired and I did not get much sleep the night before I allow myself a day of rest knowing that maybe after a short nap that I will get up and do something small like stretch or go outdoors for some fresh air (weather permitting). It can even be as simple as sitting up in bed dangling my legs off the side and do some small leg exercises. Sometimes my Allodynia is so bad that very movement causes me pain, and, on those days, I must take extra meds and let my body rest and heal.  But I do my best to get up every day, shower, brush my teeth and get dressed. Being inactive for long periods of time only makes my pain worse and maintaining a normal routine gives my day a sense of direction.

Next, I make sure I am continuing to eat healthy. If you are like me, during higher stress moments I want to reach for comfort foods, such as french fries, bread, chips, and other foods that really don’t have a lot of nutrients in them. But these foods are high in sugar, carbs, and salt which for people living with chronic pain can exacerbate your symptoms. So, as we go to the grocery store and see that the fruits, vegetables and other healthy choices are dwindling, while the candy and snack foods are abundant, Please Don’t Be Tempted. Studies have shown that pain gets worse with processed foods.

I also make sure I am staying as active as possible and I get regular exercise. When weather permits and I get outdoors and go for a walk. Because of my deficits I have to make sure I have someone to walk with me for safety reasons which makes getting out a bit harder. There are a variety of indoor activities you can do to stay active. I do Yoga with an instructor (can be done virtually) at least two times per week.   By moving and getting our hearts pumping we also release endorphins which help reduce the pain.

Getting outdoors as much as possible is also important. Social distancing doesn’t mean you have to stay locked indoors. Take your dog for a walk or make yourself and your family a picnic lunch and sit outside in your backyard like I did recently. Cut some fresh flowers and bring a little bit of the outdoors in to brighten the mood. Enjoy the warmth of the sun and fresh air.  It can help lift your mood instantly.

During times like this it is easy to fall into the negativity trap especially when most of what we see and hear is negative news. We all know that stress worsens pain. Do your best to destress, talk to family and friends, just knowing you are not alone helps. We may not be able to hang out with our family and/or friends right now, but we still require those connections.  You can use things like Skype, Face Time, or WhatsApp or whatever works for you to keep in touch. We may not be able to reach out and hug them, but we can still see and hear them.

It is important not to become isolated because feeling alone only leads us to overdo and/or do activities that cause or exacerbate our pain. We can still assist each other with things like food runs, chores, and/or cleaning. If you know someone with deficits or with chronic pain, ask them what they might need assistance with and if you are the one that is in pain or has a deficit, please ask for help.

While it may be appealing to get everything on your to-do list done, pace yourself. Overexerting yourself will just exacerbate the pain and make it harder to cope. I know personally that when my body is over tired my pain goes up quickly and my ability to deal with the pain diminishes. Don’t attempt chores you’re not up to or know are unsafe.  Getting on a ladder, mopping the floor, or lifting heavy items can wait until someone else is available to help.

We have all wished at some point that we had extra time to catch up things. Many of us have wanted the time to organize your drawers and closets, put together a photo album, mend clothes, or many other things. Maybe you have wanted to start a craft project or puzzle why not give it a try. Why not use this time to reconnect with our inner artist?

It is important for everyone to take one day at a time and to make sure you are getting enough sleep. Our body requires at least 7-9 hrs. of sleep to function better. I know firsthand that does not always happen when you live with chronic pain. For many of us each day is a struggle. Please let’s do our best to stay connected, help each other, get some rest and heal physically and emotionally. God has promised that when we seek Him with our hearts, we will find Him (Jeremiah 29:13). He has also said what we ask for in prayer and believe we will receive (Mark 11:24).  He is the greatest healer and He is with us. So, no matter what tomorrow brings, we’ll get through it together.

Trying Yoga

About a month and a half ago I found a yoga instructor that gives private instruction which was a must for me. I had been wanting to try yoga but knew I could not join a traditional class because of my deficits plus I wanted to make sure that I was being watched carefully to make sure I am performing the moves/poses correctly to prevent any injury. I currently practice yoga with my instructor twice a week and I incorporate many of the stretches into my daily exercise routine (I only perform the ones I know I can do safely on my own).

Warrior pose-It was scary the first time I let go, but over time I have taught my body that I have legs that can hold me. Loosing proprioception has been extremely difficult to deal. I have to reteach my body to know where my lower limbs are in space even when I am not looking at them.

This exercise continues to be a challenge. Not being able to see my legs is difficult. Because I practice and work at it my proprioception has improved over the last 2 1/2 yrs since my injury.

Working to eventually do this without any devices and lift my knee higher. But not bad for only doing this for a little over a month.

This my first time attempting to do this core exercise. I have since been able to do this for about 20 seconds. This was an exercise that was fairly easy for me prior to the injury. Now it takes total concentration. I will conquer this!

During this time of uncertainty, it is important to find a way to relax and destress. Why not try something new such as yoga? If yoga is not your thing then find something that you enjoy doing. Start slow and in no time, you will find that you are doing things you never thought you could. God has blessed us all with special talents/gifts maybe now is the time to discover them.

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Little moments

In our lives we all have those little moments (small encounters) when you walk away smiling and thankful for the experience. I recently had such a time. My family and I had gone to the movies, and when it was over, it was time for a much-needed bathroom break. Of course, there was a line after all it was the womens’ bathroom. While waiting in line there were two young girls and their mother. One of the girls looked to be about 5 and her sister was a bit older. The younger girl said to her mother in a not so quiet voice, “what is wrong with her? Why can’t she walk and stand?” The mother looked mortified and attempted to quiet her daughter. I turned, smiled, and explained to the girl that I have a spinal cord injury but in terms she would understand. I said, “I have an owie inside my back.  It makes it hard for my brain (pointing to my head) to tell my legs what to do. My signals get mixed up.” She then asked, “We you born this way?” I told her, “told her no, my back got really sick about two years ago and I had to have special surgeries to my back. One of the surgeries made me brain and my legs stop talking to each other like hers do.” I also explained that I use my walker to help me get around and it helps me to keep from falling because I lose my balance frequently. As I finished washing my hands I turned to the mother and girls and said, “Thank you for asking questions. I love questions. “

This small encounter was a blessing. Often people just stare or stare and point. I can tell that they have questions and are guessing as to why I am in the state I am. I only wish more people were like the younger children who ask or at least speak out loud and say things like, “what is wrong with her? Or “how come she can’t walk?” Young children often have no filter and are curious. They don’t worry about or intend to be hurtful. So, why should I get upset by their comments or questions?  Instead I view them as a blessing. It is another opportunity to help educate others about my conditions and show them that being different is not a curse.  

I believe these little encounters are little nudges from God. He brings people into our life for different reasons and for different amounts of time. Some are brief and others for long periods of time. But weather brief or not I don’t want to miss the opportunities (blessings) that I am given.

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Not ready to quit

Having hope and believing that God is healing me has continued to give me the courage and strength to continue moving forward. My hard work of going to the gym and working with a trainer at least twice a week, continuing to stretch and crawl as much as possible, and recently adding in the use of the Bioness L300 Go system are paying off . My walking and balance have improved! I am hopeful that I will eventually be able to walk device free again. I have also recently begun to get more feeling in my right leg. Six months ago, my right leg was mostly numb only having feeling in the ankle and behind the knee. I am beginning to have intermittent feeing at the back of my thigh and along the inner and out areas of my leg.

This was 6 months ago in June. My walking is clunky and stiff. It was difficult to control my especially if I wasn’t looking at them.

This was yesterday morning. My walking is still stiff, but it is smoother. My knees don’t snap as often. I also can walk without looking down at my feet all the time. God is good and He is helping me get through day by day. I refuse to give up. I will dance freely again!

Back to using the Bioness L300 Go

I have been unable to use my Bioness L300 Go system for the last two weeks due to the unexplained swelling and pain I had in my right leg. The doctor believed that it was a vein in my leg ruptured which caused the swelling and bruising. So, I took a break from using my devices, but now I am back to using them gradually. I am hopeful that overtime I will improve and graduate from having to use any assistive devices because it is believed that over time new nerve pathways are created. This means more communication from my legs to my brain. This will help improve my proprioception which will improve my balance and feeling in my legs.

I am walking on an incline. My walking continues to be jerky, but with lots of prayer, time, hard work, and going back to Pt for gait training my walking will improve. I am blessed to even be able to stand and walk. I will never take my legs for granted again.

We may not be where we thought we would be but…

Your life may not be where you always envisioned it would be just yet, but all you have is now. Remove the unrealistic expectations and unfair demands of perfection you’ve placed on yourself…close your eyes…and just dance. Really experience life. Really experience God’s love. Enjoy the knowledge that you belong to the Lord and feel the joy of sharing Him with others. Enjoy the life God has given you as you cast every care on Him!

Prayer: Father God, thank You for the life You have given me. Show me how to fully live it without placing demands of perfection on myself. Help me to just dance, just live, and enjoy the gift of life You’ve given me and live it to the fullest in You. In Jesus’ name, Amen.

My life changes what seems like daily. Living with chronic pain, dealing with a spinal cord injury which left me with deficits all the while still being a wife, a mother, and grandmother isn’t easy. Yet, I know that I am here for a reason. Each day I open my eyes I am thankful for another day I get to be with my family, enjoy everything around me to the best of my ability, and to have the opportunity to keep moving forward. Even on the days I feel like I am going backwards, I know that God is still with me working on me, refining me.

Significance

O Lord, what a variety of things you have made! In wisdom you have made them all. The earth is full of your creatures. Psalm 104:24

Each one of us is a unique creature of God that was created to enjoy all that
God has made. We all play a part in this world, but we cannot reap the benefits of what God has given us if we don’t know our own value and significance. I was reminded of this recently when I attempted to throw away a pile of rocks I found in my car and one of my granddaughters yelled, “Stop, those rocks are special. I found them when I was taking a walk with my mom.”

My grandchildren ages 5, 7, and 9 love to collect rocks. Each one is different
and has a story. I find these rocks of various sizes and colors in places
around the house and car like on the kitchen counters, on my washer or dryer, on the coffee table, under the seats in the car, in the back-cup holder, and various other places. Each child can tell me a story about where the rock was found and what they were doing when they discovered the rock (s). These white, brown and grey ordinary insignificant rocks were beautiful and valuable because of the special memories they created.

It made me wonder if I do a good job of letting those around me know how
much I value our time together. Do I make them feel important (significant)? Do I remind them and tell them? How often do I tell them;

You make me laugh and happy!

I enjoy out time together.

I believe in you!

You are important to me.  

I love you.

Each day we are given another opportunity to enjoy all God has given us. Another opportunity to keep moving forward, but for this to happen we must first take the time and notice its significance.  We will never regret taking the time to spend with our loved ones, but we might regret wasted moments looking at our phones or sleeping the day away. My grandchildren could have walked by and ignored the ordinary rocks. Instead they saw the beauty and significance in each rock they collected. The rock(s) helped form a special memory, which gave them meaning. How can we do this for our family and friends? Our lives are often busy and rushed, but I urge you to take some time to make sure those around you know that they are significant (important).

 

My Bilateral Bioness L300 Go System

Back in July I test drove new devices to see if they would work for me. The Bioness L300 Go are electrical stimulation (FES) foot drop and thigh weakness devices that provide freedom and independence for people recovering from Stroke, Multiple, Sclerosis, Cerebral Palsy, Traumatic Brain Injury, or Incomplete Spinal Cord Injury. The good news was that they worked, but the bad news was that they are costly, and insurance does not cover them. We submitted the claim to our health insurance provider, and we received the denial stating that these devices are not considered a medical necessity. Why is it that devices and/or procedures that can and will improve the quality of life of the patient are considered “not medically” necessary?

This creates a difficult decision of finding a way to pay for the devices at the cost of $5530 each ($11,060 total for both legs) or just doing without knowing that these devices can mean the difference between regaining more independence by improving and rebuilding neuropathways and proprioception. In speaking to the representatives from Bioness, most patients are left in my situation of having to pay for the devices themselves or giving up on their dream of walking with better stability, control, and better overall body posture.

The L300 made walking easy and light not heavy and stiff like it is normally. It senses when my foot and leg are getting ready to push off and move forward. The sensor sends an electrical signal to my foot/ankle causing the device to activate and lift my ankle thereby flexing the foot and lifting the ankle and toes preventing the foot from dragging. Because of the SCI (Spinal Cord Injury) I also lost proprioception along with balance. The signals that go from my lower extremities to my brain and back are interrupted because of the damage to my spinal cord. In order to regain more stability my body must rebuild and create new neuropathways. This where these devices can help. As the devices send the signals to my legs, my brain and body engage via the new neuropathways being developed. Over time these new signals turn into sustained signals allowing the body to adapt and rebuild balance and proprioception. They also allow for better posture and body mechanics as the patient is not hunched over a walker, the hips and thigh muscles are more engaged allowing the legs to do their job reducing the stress on the knees and ankles.

The cost of these devices makes them out of reach for most patients as they are not covered by insurance. There are alternatives such as financing them or paying for them via credit cards. I believe that more patients should have the opportunity to obtain such devices, but until these devices become more affordable or insurance companies start recognizing these devices are “medically necessary” they will remain out of reach for most patients. As for me, my family and I have decided to order my devices and appeal the decision of our insurance company. We know that the likelihood of getting reimbursed is next to none, but the benefits of using the devices far outweighs the cost.

Once I receive my devices I will move on to the next step. I will meet with a representative from Bioness where my devices will be fitted, tested, and set up. I will be taught how to work the devices, how to care for them and charge them.  I will also return to physical therapy for about 8 sessions working with the devices making sure that they are set to the right frequency and intensity so that I gain the best possible outcome.

It is my hope that over time I will improve to the point where I will not longer need any devices. But for now, I will continue to keep moving forward, and praying every step of the way. God continues to bless me even through the pain.

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.

To Beat COVID-19, Social Distancing is a Must — NIH Director’s Blog

gettyimages/SDI ProductionsEven in less challenging times, many of us try to avoid close contact with someone who is sneezing, coughing, or running a fever to avoid getting sick ourselves. Our attention to such issues has now been dramatically heightened by the emergence of a novel coronavirus causing a pandemic of an illness known as COVID-19.…

To Beat COVID-19, Social Distancing is a Must — NIH Director’s Blog

Little improvements

Standing doing my hair without any assistive devices! My balance has improved thanks to doing yoga with an instructor 2x per week (5 weeks so far) and using my LifeGlider.

I did have a recent fall🤪. I was bending down to pick something up off the floor, I had undone the safety belt on my walker as it was restricting me,there was water on the floor and my legs slipped causing me to loose my footing and down I went. Not smart on my part. Just because my balance and proprioception have improved some does not mean I don’t have to continue to pay attention to what I am doing. I still have to remind myself of walking hill to toe, to pick up my feet, and not to lean forward. Old habits are hard to break!

I am still excited about all the progress I am making. I know I am not doing this alone. Thank you everyone for your continued prayers and your words of encouragement. I know God is with me and because of this anything is possible. His promise to be my side every step of the way helps to keep me moving forward even when there are set backs.

Trying something new

My workouts at the gym seemed to be hitting a plateau. My walking and balance were not progressing much. So I decided forgo the gym and try yoga. After a 3 year search I finally found an amazing yoga instructor that comes to me twice a week for an hour. In just 3 short weeks there has been lots of improvement. The first few times I tried this I fell over. Because I lost balance and proprioception (the ability to know where my limbs are in space), when I cannot physically see my legs they tend to do their own thing. I still practice crawling as I believe that it has aided and continues to aid my ability to do more and more.

The plan is to continue doing yoga and gradually add the gym back in. My body tires very easily and it has required me to make adjustments to my daily life including the way and for how long I exercise. Because I have difficulty regulating body temperature I have to make sure I am hydrated and I don’t over exert myself. One major change is I really do not sweat from my torso down. This means my body cannot naturally cool it self by sweating. So becoming overheated is a real hazard.

So thankful for all that God has brought me through and continues to bring me through. Some days are filled with pain and tears while others are filled with blessings, joy and laughter. No matter what it is God is with me every moment refining me every step of the way for His glory.

Thinking of getting a new set of wheels

There notable changes in my gait. This walker causes me to engage my gluteus muscles. I can see it in the video, but more importantly I can feel it. I can feel my weight shift! Because of my spinal cord injury I have lost feeling in many areas from about mid-back down.

I am also going to try a new walker on the market called the LifeGlider(https://www.mylifeglider.com). It is also an upright walker, but this revolutionary walker could be a real game changer. It allows you to walk upright while being securely strapped in allowing the user to walk and move securely even when they let go with their hands. This feature alone would give me back so much.

In the past, I was not a big fan of the upright walkers. When I tried similar ones, I felt wobbly and very unstable. This time was different. The walker felt strong and stable which helped me feel more secure plus it was super easy to maneuver.

I am not sure which upright walker I will end up with, but I know I am switching. No more bending over and stressing out my back more. Traditional walkers cause the shoulders to rotate forward causing poor posture, which stresses the shoulders and upper back. Unfortunately, I am not able to walk without assistive devices, yet.

Still I feel blessed beyond belief. God’s timing is always right. My family and I have done a lot of research on walkers and other assistive devices to no avail until now. I have always believed that if it is God’s will it happen. His timing is perfect.