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!
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.
On August 13th 2014 it will be one year that AJ was diagnosed with ALL Leukemia. It has been a journey of ups and downs. More ups than downs. He is a vibrant child with so much love and happiness to share. We are all learning from him. Prayer still continues to be at the center our journey. God has chosen to use him to teach us all.
During this first year AJ and I am sure many other children with cancer have as well has gone through repeated testing. It is hard to just watch. Praying is the only way to actively be involved sometimes. Watching a three old come out of anesthesia for the umpteenth time is hard for everyone. He wakes up wanting mommy and daddy, then starts screaming because he cannot really understand what is happening. Having repeated LPs(Lumbar punctures) every three months to check his counts to see if the chemo is working is not what any child should have to go through.
AJ tends to get agitated for days after the procedure. He get angry and throws things for no reason. He screams and cries for no apparent reason even when in public. Then the doctors add in the steroid treatment. The meds change him. He is normally a cuddly and affectionate little boy with lots of smiles. During this period of treatment he becomes unruly and angry. His parents as well as others around him have had to learn patience and to deal with society views of him. People in public places often react negatively. They believe he is just being a brat. See they don’t understand that he has leukemia or that he is taking medication that changes his behavior. Even when he is wearing a mask people assume he just has a cold. But, through prayer God had given us the ability to help others understand more about his illness and what it means. We have all had to learn to be more tolerant and do things with love and not out of love.
Through the power of prayer God heals the fear. HE gives comfort and teaches us that we are in His hands. He is there to hold AJ and sooth him as well as to hold us. His mommy and daddy gain God’s reassurance that their little boy is healing and going to be okay through the doctors. God connects us all in ways we have no idea how they happen or why they happen. HE gave AJ the right doctor at the right time and the cancer was caught early. Each time AJ’s counts have fallen, God has answered the prayers of the many. There is no doubt that there is true power in prayer.
May others be blessed and encouraged to seek God and pray. For God, loves us and wants us to seek Him and rely on Him. He does not care if you haven’t followed Him in the past. He is waiting with open arms to welcome you back in to His family.