As we begin 2020, why not spread love instead anger and hatred? Take time to listen to one another. Or simply share smile. It can change your day and there’s.
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).
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.
It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary. We cannot take responsibly for things we cannot control. We must let go of the guilt and focus on the things we can control.
Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t…
All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Yes, I really do struggle with admitting I have a chronic illness, but my body reminds me every day. I am learning to change the” you’re a failure because you can’t… “story into look at what you are overcoming and continuing to do.
It takes constant reframing of my thoughts. It is so easy to see and hear the negatives. It is important to recognize and deal with what you are feeling.Hiding and pushing your feelings aside only keeps them festering and making the story you hear in your head seem far worse that it really is. By reframing the negative thoughts and feelings we can continue to keep moving forward. For example, When those around you who believe they are being helpful constantly say things like- “Your standing with your knees locked “followed by “you’re not picking your feet up” or ”Get your feet under you , you are leaning to far forward.” And of course, I can feel the issues because my balance is off, my legs buckle and just standing is difficult. Instead of focusing on the negative I do my best to reframe my thoughts to something more like, “Look at you, you’re standing,” or “Wow, you just walked up hill and it was easy.”
It is perfectly okay to Give yourself a pass. Again, understand and realize that you are not choosing to do something. All of us that live with chronic pain/illness must accept that our bodies don’t care if we have plans. Our bodies are going to do what ever they want. So, take the time to rest and recover so that there will be better days ahead.
Be sure to treat yourself with kindness. Reframing your negative thoughts into positive ones helps tell a better story which will impact our emotional state. Remember our brain is powerful and it impacts what our bodies physically feel. Higher stress levels means more pain and a reduction in our ability to deal with the pain.
Reminding yourself and finding the things you can do is also of value. Pain often interrupts our plans, but instead of getting angry and down focus on the things that you have accomplished during the day. We cannot fix the past, but we can adjust and make changes to our future. Find things like painting, gardening, or other hobby to get out and meet others or to relax.
Every step I take is a miracle that God has given me, and it is so easy to lose sight of how far I have come. It is easy to let the negative thoughts and guilt in and start believing them. This affects my mood and my pain levels. Learning to reframe my thoughts, pushing all the yuck out helps reduce my pain levels, makes for a happier day to day life, and makes my mood much better. Stop feeling guilty about the things you cannot control because this only stops you from moving forward. I encourage you to let it go.
Taking time to relax and rest. After a week of being sick as well as dealing with the daily issue my hubby and I are enjoying visiting our family and relaxing in New Port Beach,Ca. This will be our view for the weekend. Hoping this will bring more healing into my body. Enjoying some of the wonders God has given us!
Enjoying the outdoors and cooler weather in Big Bear. Taking time to seize the moment when my pain in on the low end for me (about a 4) and watching to make sure I do not over heat and cause my symptoms to flare.
Not being able to regulate my body temperature has made getting out more difficult. Because I only sweat on my face and neck my body cannot cool itself which poses the risk of over heating and heat exhaustion, so staying cool and drinking plenty of water are a must. Then there is the opposite issue as well. My body cannot tolerate over air conditioned places. Both extremes cause my body to spam and burn more, which of course, causes my pain to increase. Oh, the joys of living with a spinal cord I jury.
The best thing I can do for myself is to take the opportunities that present themselves and keep moving forward. At the same time, learning to allow myself down time when my body is in pain without beating myself up. I still have work to do in this area.