Tag Archive | Spinal Cord

Things I sometime think about…

Becoming disabled at the age of 52 was not what I had planned for my life. I am supposed to be enjoying life with my husband, traveling, having fun with my children and grandchildren not wondering how much pain I going to be in or how many spasms am I going to have to endure. Now I am learning to live with pain at 5+ on the pain scale on most days as well as having to take way more medications than any normal person and having to use assistive devices. Yes, these things make life more difficult, but learning to navigate in public places as well as with the public is even more difficult.

Just going to any local grocery store, pharmacy, or restaurant possess challenges that beg the questions like: why must they all have industrial mats at the entry year around? or Why are the handicap bathroom stalls are at the back of the bathroom? Should they not be at the first stall where people with disabilities can get them  fast and easier? or Why do most places make the doors to enter the bathroom so heavy that even a person with no disability has difficulty opening ?

Every time I enter a building, I must be aware as there is often a major trip hazard called rugs/mats. This is especially true when you are using a walker because as you “glide over them” they catch the wheels and lift causing a major trip hazard. When the mat lift you then have to stop, lift up your walker so you can dislodge the mat stuck under the back wheels or skid plate, and then set it back down before walking on. Well, if you are using a walker chances are you are already unstable like me. Now, I must try to stand balanced while lift and setting down my walker. Does not sound very safe to me.

Next, why is it that in most places the handicapped restroom is the very last stall, there is usually only one stall, and just entering the restroom is a chore? Most people living with a deficit already have difficulty so making the door to enter so heavy that even someone who is healthy and strong can barely open it is just uncalled for. Living with a SCI and Chiari Malformation does not just cause added pain but also creates bowl and bladder issues. Often when the urge hits you must go right now. So, struggling to open the door, only to find out you have walk even further then abled body people and then there is only one stall which is now occupied by an able body person.  Women tend to use these stalls when they have small children-So why not use the family restrooms instead? Granted in some locations they put the changing table for babies in the only stall available for handicap which complicates matters some (not sure if this is true in the men’s restroom).  It seems strange to people when you have a grown adult doing the pee-pee dance because you are doing everything you can to not have an accident. It is a bit embarrassing to be an adult that has bathroom accidents, but it happens.

Having illnesses like Chiari, MS, SCI and many others means dealing with not only the everyday pain and discomfort it also means learning to deal with bowl and bladder problems. There are days where everything works like it is supposed to and then in the blink of an eye you are dealing with urgency and inability to control your bowel and/or bladder. It is already difficult having to deal with chronic pain and instability but then we also must navigate in a world that is not made for people with disabilities. So, when you are out, I would ask others to be a bit more considerate, avoid using the only handicapped bathroom if possible, and pay attention to your surroundings. You can help those of us with a deficit by being proactive and watching for hazards and bring them to managements awareness just like I do. Even with the obstacles, I still am grateful for every day I have, and I feel truly blessed. I will keep moving forward and do my best to tell a better story as I know that God has a plan for me.

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Thankful

Every breath and step I take, and every hurdle I conquer is because of Him. Facing each day with Him means nothing is too big to overcome because even when I think I am failing He is picking up and carrying me to the finish line.

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.