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.
The gorgeous sunset tonight. Enjoying the view while navigating the pain and spams. Have enjoyed the day watching my grandkids and nephew hang out and boogie board. So thankful for the special moments when my pain is down. Ugh!!!!Spams and burning. Man it sucks! The pain often interrupts my life in so many ways. Doing my best to enjoy as many moments as possible. God has painted the sky yet again!
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!
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 →
So thankful to be alive another day. I only wish I didn’t have to live in pain all the time. Even with pain meds I can’t control the pain. Living with a spinal cord injury is not what I planned for. Nobody plans for this. Who would want to wake up everyday with a pain level of 5+? Who would want to find it difficult to even stand or walk? I realize that there are those who can’t even walk. I am thankful that I at least am able to walk with a walker and I am working on improving my ability by going to physical therapy three times a week.
Even so the questions keep coming. When is it my turn to wake up not hurting? Will I ever get a break from the pain? Will my legs ever get better? Will I ever get feeling back in my right leg? Will my proprioception ever get better? When do I get to run and play with my grandchildren or will I ever get to kick a ball with them? These are just a few of the questions that run through my head daily and sometimes several times a day.
Some days it is hard to deal with it at all. Just getting up and taking a shower takes all I have sometimes. First, just getting undressed is extremely painful. Taking my shirt off feels like the skin on my back is being sliced open by sharp pieces of foil. Next, the water that should be refreshing feels like spiked fireballs hitting my skin.Then drying off feels like being my skin being dried off by sandpaper. So you can only imagine how hard it is for me to put clothes on. I put on my Lidocaine pain patches first which is a not an easy task. I have to balance myself and use both hands to apply the patches to my back in the areas where the burning and pain come from. Often it takes several tries to get them on correctly, on days when my husband is home he helps me. This task alone causes extra pain, but eventually the patches help to reduce the pain some by numbing the area some.
I hate having to take so many medications. I take Baclofen 20 mg three times a day to help reduce the spasms in my back and legs, Gabapectin/Lyrica ( changing meds slowly), OxyContin 30 mg every 8 hrs., and Oxycodone 15 mg every 4 hrs as needed for break-through pain. I also have to take Senna 2 tabs every morning along with Miralax and Metamucil to help keep myself from getting constipated as taking all the narcotics slows my bowls done. Even so, my pain is often not controlled well. This makes life difficult and causes me not to be able to do many of the things I like to do.
Getting out with family and friends is very difficult. Most people don’t understand the amount of discomfort I am in nor do they understand how to be around me. Yes, I need help with some things but not everything. People tend to want to help by treating like I am incapable of doing anything. For example, I can walk with a walker slowly, but I don’t need to be held like I am going to fall over. I can also walk up and down stairs fairly well and don’t have be held up. But when I need to stop and rest, I need to stop and rest not be treated like I am falling over or I am about to die. What people forget is that doing as much as I can for myself is important. It helps me recover and feel a sense of accomplishment especially since I have lost the ability to do so many things. Feeling like I have value is important to recovery. I only wish those around me understood that.
My hope is that people who read this will understand that if they or someone they know is going through anything similar that they are not alone and that are others that understand what they are going through. Whether it be pain or loss of function or both, we still have value. We still want to be treated like we count not like we are fragile and incapable of contributing. Yes, we may need more time to complete a task, but give us the chance and if we need help we will ask for it.
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.
As someone who deals with Fibromyalgia daily there are just some things I wish people would stop saying to me and others that have the illness.
1) Fibromyalgia isn’t a real disease. Well, let me say for all of us who suffer from it, IT IS REAL! The pain and fatigue are real. The sleepless nights are real. Also, the FDA has approved medications to treat Fibromyalgia and they generally don’t approve medications for imaginary illnesses.
2) We all get aches and pains as we get older. Yes, we all to get more aches and pains, but the pains most of us with Fibromyalgia feel are intensified. And for a great many of us we begin to experience pain at an age when we shouldn’t hurt.
3) If you sleep more you will feel better. Well, sleep is important, but unfortunately the ability stay asleep is a challenge. Often even after a full night of sleep people with Fibromyalgia still do not awake refreshed because the body does not get into the deepest stage of sleep. Therefore, even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. This is the reason that sleep aids are often prescribed.
4) You need to get more exercise. Most fibromyalgia treatment plans include exercise, but it must be approached slowly and carefully to avoid triggering a flare.
5) You don’t look sick. If I we let ourselves go and really showed how bad we feel then people would not want to be around us. Yet, when we try to focus on feeling better and but on a “brave face” then we do not look sick. I know that for me personally when I do my hair and make-up I tend to feel better even if I have to rest afterwards.
Our families and friends mean well. This is a note for them. Please be considerate and think before you speak. It is not easy for those of us with the illness. It can also prevent a very negative response for the person with the illness. People tend to be a bit grumpy when they do not feel at their best.