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.
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.
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.
Each day is different. Some days are great in that the pain is down usually around a 3 to 5 on the pain scale. Other days no matter what I do the pain remains high at about 5 to 9. There is no reason for it as my medications remain the same. Why? This is the one of the questions that plague me. I am learning to deal with so many things, but the one big thing is letting go of the why and learning to live in the now. This is beyond difficult.
Some days it feels like God is gone and has left me. He hates me. He not only took the use of my legs, but has allowed me to continue to hurt at levels that are unbearable at times. I have become isolated from those around me as their lives cannot accommodate someone like me who is slow moving and unreliable because the pain. My only communication with “friends” is often via things like Facebook or Instagram. It is a lonely place to be. The reality is people don’t just want to sit around watching TV, playing a game or talking with someone who is hurting because we are not fun to be around. Besides their lives don’t have time for people like us who are in constant pain and disabled.
Learning to let all of that go and see the “bright side” is not easy. Realizing that God is still there and He really does love us seems like a dream. For me, deep down I know that God is real and He loves me. The enemy loves to sneak in and make me doubt everything. So often questions like, can my family still love me the same? How can I still be whole? How can I take care of my family as I can barely take care of myself? Each day seems to bring new questions and doubt. It sucks. It doesn’t help when the people you love are constantly telling you things like- Pick up you feet, bend your knees, don’t bend over and pick things up. As for me, I already know my body doesn’t work right I really don’t need to be reminded constantly.
So how do I let is all go? I don’t know at this point. Each day all I can do is pray constantly and do my best to move forward. With God’s help it is my hope that I will find a purpose for my life and I can learn to let all of this go accepting what is happening to me.
Having lost the feeling in my legs and living in pain made the thought of dancing seem impossible. My husband and I attended a Halloween party over the weekend. I was just excited and happy to be there as last year I was in the hospital recovering from one of the multiple surgeries.
As I sat next to my husband watching people come into the party dresses as various characters, I turned to find an old childhood friend. She recognized me immediately, we talked and made me smile and laugh. She vowed to get me up to dance. My fear that I was going to be unable to do so set in. How could I dance being that I walk with a walker and I can only feel my left leg? At least my pain level was fairly low at a 5.
I stood next to my husband near the seating area and moved a bit to the beat of the music. Oh, how I missed dancing and moving. After all, I was a dancer most of my life performing in various places over the years. It has been one of my the biggest losses. Loosing the use of my legs, not being able to feel or move is one of the hardest things I have had to deal with. The thought of not being able to stand cheek to cheek with my husband and move slowly to the music help bring my spirit down.
Standing and moving felt amazing. It was a bit scary, but invigorating at the same time. My pain level remained low at about a 5. My friend came over and signaled, “Let’s go.” So I followed her with my walker out onto the dance floor. I began to move to the music. It felt great. I had to keep looking at my feet as without looking at them my brain has no idea where my feet are in space and I will fall over. I held on to my walker and began to move my feet and body. It was an amazing feeling. I never thought I was going to be able to do this again. But yet again, God blessed me with a special gift.
For the brief moment in time I felt great. My pain was low, my legs held me up and moved to the beat. I smiled and felt alive. I will cherish this moment as I don’t get many of them. So thankful for my blessing. Lord, thank you for all you give me. I still struggle from day to day as my pain fluctuates. I only hope that as I continue to go to physical therapy that my legs with get stronger and work better. I hope that I will move from a walker to a cane. That I may regain some mobility and self-worth. I hope that my pain level will drop so that I can enjoy more of my life. For now all I know for sure is that God continues to be with me and watch over me. He continues to help heal me. For this I am blessed.
As each day passes my physical pain never seems to go away. The question I ask myself is, Is my pain real or just in my head? I ask myself this because I have been told over and over again that, your brain controls everything and you have the ability to control your brain. Well, when you have a physical condition that creates pain how does that constitute that your pain is all in your head?
I have been to so many doctors over the past few years that deal with my physical conditions of spinal cord injury, arachnoid cysts in my thoracic spine, and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real and others like to pretend that my pain is going to go away. Regardless I am still left with the limitations that my pain creates.
Some days I am able to move around with less pain than others. Often I am asked, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” is never acceptable. Instead I often hear, Well, you’re the only one that tell us why Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do everyday it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out I would duplicate it so that everyday would be better?
All I can do is keep moving forward. Continue to deal with my pain with the use of medications, natural remedies, and daily exercises to help strengthen my brain’ s communication with my legs and back. Right now my brain doesn’t fully realize I even have legs. With the loss of proprioception in both legs, my brain forgets things like I am standing, which causes me to fall if attempt to do “normal things” like try to stand and take a picture or walk without look down at my feet or legs.
My brain is also hyper over sending signals which make my nerves overactive. This causes my back to feel like my skin is being stretched and it is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg that is almost completely numb and heavy to feel like there are a million spiders with sharp needles on theirs legs to keep poking me repeatedly. I am prescribed Gabapectin 700 mg three times a day for my neuropathic pain in conjunction with Oxycodone 15 mg every 3.5 hours to control pain. None of this works well. I find that the Oxy takes about an hour to start working than only works at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.
So what is left? Self help and prayer. It is easy for me to understand how depression can set in for quickly. This is where the power of prayer and hope come in. Continuing to have hope that I will get better and that new medications and/or treatments will be discovered to help me and others like me are what keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, the will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just two months after my 8th surgery. I refuse to give up as I know God will keep His promise.
In the past few months
In April after a long discussion with my Neurosurgeon and husband I decided to go ahead with the surgery to remove the Arachnoid cysts which were growing in size and put more pressure on my spinal cord. The two known cysts had formed in the Arachnoid space in my thoracic spine. My symptoms of numbness in my legs, gait disturbances, feeling of spiders crawling down my back and legs, and over-all pain had increased as well making the decision for surgery fairly easy.
The procedure was explained. A small 2-3 inch incision would be made down the middle of my back, then the spiny processes would be removed at T4-T7, and then the cysts would be drained and removed. The spiny processes would then be put back into place with small screws. The procedure would last about three hours in length. I would then have an overnight stay in the hospital. I would have some physical limitation of no lifting anything over 5 lbs for at least six weeks, no strenuous exercise for 6 weeks and no driving for at least a week.
On May 3rd the surgery was performed. The surgery took about 3.5 hours. There was one complication in that I bled more than they thought and two pints of plasma were required. The doctor stated that the surgery went well. He stated that the cysts were a bit more tangled than expected, but despite that all went well. I was up and walking the next morning. I felt pretty could minus the soreness at the incision site.
I was discharged home later the day after my surgery. My discharge instructions were to walk as much as possible, no lifting anything over 5 lbs., no bending or reaching due to the fall risk, and to rest as much as possible. I was also discharged with several medications Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Flexeril three times per day, and Hydrocodone 10-325mg every 4 hours for pain. Over the course of the next 7 days I appeared to be healing well and felt pretty good. I was doing everything I was told.
On May 10th I felt more sore than I had the previous day. I was still feeling pretty good. My family even celebrated Mother’s Day on Saturday May 11th with a nice dinner. It was wonderful to see everyone. I continued to become more sore over the next few days. On May 12th, Mother’s Day, I got up and took a shower anticipating going to church and celebrating Mother’s Day. The cramping in my back became so severe that I knew something was wrong. My husband agreed that we should go to the ER.
I was taken back after waiting almost two hours in pain. The pain increased with each passing moment. I was immediately connected to an I.V. and given the pain medication Dilaudid. The pain was reduced, but the nausea that this med created was horrible. I was given Zofran which helped with the nausea. Another nurse came to check on me later and my pain had increased. She stated she could give me more Dilaudid. I told her that it made me very nauseous. She said she could dilute it and push it slower over a 2-3 minute time frame. I agreed. It worked and no nausea.
After several tests including an MRI it was determined that the cysts had reoccurred and a second surgery would have to be performed. I was admitted to the hospital again. The next morning they ran several more tests and attempted to get my pain under control with using a combination of oral pain meds and Dilaudid. My husband and I both made sure that the nurses diluted the Dilaudid and pushed into the IV slowly. My doctor came in later that day and stated that I was definitely going to need a second surgery. I was back in surgery the next morning. The doctors explained that the he used a microscope to make sure the cysts cleaned out. My incision was larger now and closed with staples instead of sutures.
After spending 5 days in the hospital. I was discharged home with the same limitations as before along with a long list of medications. I was now taking Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Somma 350mg every 6 hours, Robaxin 750 mg three times per day, and Hydrocodone 10-325mg every 4 hours for pain. Although when I arrived home I found that I could not lay on our bed because it was painful to lie on the staples. Also, it was very hard to roll in either direction. I could not sit nor stand for two long because my back would begin to spasm. But as time passed, the incision continued to heal and sleeping in bed became much easier and the use of pain medication was reduced. But it was not over yet.
I began to really feel much better. I even went to the local market night with my family. I walked around and was able to go out to dinner with them. It had been 11 days since my last surgery. But the next morning that all changed. I began having severe cramping in both my legs as well as spasms in my back. Again, I returned to the ER. I was immediately admitted. This time a mylogram was done to see if they could determine exactly where the problem was. At the same time a spinal drain was placed. It was the hope of the doctors that the drain would relieve the pressure by removing the excess spinal fluid from around the area. This was not a painless procedure.
For the next two days spinal was drained every 4 to 6 hours. The pain it caused when it was drained was incredible. It caused my legs and back to spasm as well as light-headedness. On the third day it was finally decided that the drain was not working so it was removed and the muscle relaxants and pain meds were increased to control the spasms and pain.
After much discussion the only option was surgery. The doctor stated he needed to place a drain. The only option was not a good one. He stated that a shunt would be placed in the spinal cord and drain into my stomach via a tube. He was not keen on this as there is a high failure rate as well as another surgical incision had to be made into my abdomen. He left my husband and myself feeling scared and unsure of what this really meant.
Later that afternoon my physician returned. He stated he came up with something had never been done but he was confident it was the best of action. He stated he was going to place two pieces of titanium tubing in the arachnoid space allowing for better flow and reducing the risk of the cysts returning.
It was a much better option than having a shunt drain into my stomach. So I was prepped for surgery the next morning. The surgery was a success. I spent two more days in the hospital. I returned home with much soreness, but better use of my legs and noticed a reduction of spasms.
It has now been 3 months since this last surgery. I am getting back to a more normal life. I still have pain and spasms but they are far less. I would consider this success. I can at least now enjoy more things in life such as hiking, playing with my family and kids, swimming and hopefully more things to come.