Tag Archive | friends

Pain Is it real or just in my head

As I awake each morning my body reminds me of how damaged it is because the pain never seems to go away. But the question I continue to ask myself is, Is my pain real or just in my head? I ask myself this because I have been told repeatedly 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?

Over the past few years, I have been to many doctors which deal with my physical conditions of incomplete spinal cord injury, arachnoid cysts in my thoracic spine, Chiari malformation 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 all in my head and is going to go away. Regardless I am still left with the “real” limitations that my pain creates.

Some days I can move around with less pain than others. Often, I get asked questions like, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” never seems acceptable.  Instead I often hear comments like- 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 every day 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 every day would be better?

For now, all I can do is keep moving forward by continuing to deal with my pain by taking my prescribed medications at the same time daily, stretching and doing balance exercises to help strengthen my brain’ s communication with my legs and back. Right now, my brain still doesn’t fully realize I even have legs. For example, if I stand at the kitchen counter without looking down at my feet periodically my brain sometimes forgets I am standing, which causes me to fall. This is caused by the loss of proprioception in both legs.

The communication from my brain to my nerves is also on overdrive causing my nerves to overact. This causes the skin on my back, stomach and upper legs to feel like it is being stretched, sliced and 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 which normally has very little feeling to feel like there are a million spiders with sharp needles on theirs legs are poking me repeatedly.  I am prescribed Gabapentin 700 mg three times a day for my neuropathic pain in conjunction with other pain medications which I take every 4 hours to “help” control the pain. None of this works well. I find that the pain medication takes about an hour to start working then only work 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, is my pain real or in my head? I say both.  The pain is real, but it can be exacerbated by my brain response to stressful situations and by physical changes. For example, if my body is fighting a cold my pain often increases until the illness runs its course. Stressful situations often lead to more pain. It is easy for me to start doubting myself and lose my perspective therefore, creating stress and more pain. But because I have hope that I will get better, whether it is via a new medication and/or treatment or answered prayer I will 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, they 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 a few short months after my 8th surgery.  Currently, I still walk with a walker, but I can walk some without any assistive devices. I refuse to give up as I know God will keep His promise and we all have a better story we can tell.

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.

Motivate each other

www.bible.com/114/heb.10.24-25.nkjv

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.

Fear kindles courage

If you are faithful in little things, you will be faithful in large ones. Luke 16:10 NLT

Everyone has experienced fear, but it is how we deal with it that matters. We all can face our fears and overcome them, or we can let the fear cripple us. Becoming disabled at the age of 50 was not what I planned for and it led to so many questions and uncertainties. Thankfully fear kindles courage and courage is what helps us overcome our fears. So, we must find the source of our courage in order to confront our fear.

It is my belief that courage can come from our experiences, from those around us who encourage us, but most of all from God. When I attempt to face a fear on my own, I tend to become overwhelmed and anxious keeping me stuck. But when I seek God’s help first, He lets me see that although my fear may be bigger than me, it is not bigger than Him.  When the physical therapist told me to stand for the first time after my spinal cord injury, I was scared, and I did not believe my legs could hold me up after all I couldn’t even feel them. I cried out and asked God to help me through this. He answered by giving me family, friends, therapists, and doctors which continually encouraged me letting me know that they had faith in me and my ability. Their faith in me was greater than the faith I had in myself and because of this it gave me the courage to get through some of the scariest times.

Our fear regardless of how small or big can cripple us if we let it. It can keep us from reaching our full potential, but when we seek God – “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go” (Joshua 1:9). He guides us, showing us, He is there by helping us to keep moving forward despite our fear. He brings people into our lives to help us through. It is my belief that this is another way God lets us know that we are never alone and our fear maybe bigger than us, but it is not bigger than Him.

Learning-to-deal

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.

 

Days that aren’t so good, can be little blessings

As I continued to hope that the pain would get better, I realized that wasn’t going to happen. Because of the pain I had to miss yet another outing. I did not get a chance to go out trick-or-treating with my 11 yr old daughter and husband, but instead I stayed home with our 15-year-old and his friend who were handing out candy.

My pain remained fairly high at about a 7 most of the evening regardless of how much medication I was able to take. Of course I have to be very careful, as the potential to over-dose is high so there are times that I have to just deal with the pain.  Even so, my heart ached to have to miss yet another outing, but at the same time I was thankful. Because I hurt I got to stay home and hear the laughter joy that was coming out of the other room.

Our son and his friend were playing video games, eating pizza, joking, and laughing. Sounds that I wish we heard more often. You see, our son often is isolated in his room programming his computer, playing computer games, or listening to/playing  music. He is the typical teenager. He does come out and join us for family game night and movies occasionally.

But in the midst of pain, God has blessed me yet again.  Instead of just sitting around watching TV and hurting,  I was able to be a part of this special moment of laughter and fun.  As they both ate pizza and came in for seconds they were pushing each other and making jokes. Listening to them bought smiles to my face. Rare moments like these are cherished even when physical pain is makes it difficult.  Actually listening to the joy coming out of the other room helped reduce my pain. I am so thankful for these little moments that God keeps giving me. Continue reading

Dance, Dance , Dance

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.