Taking on Daily Physical, Mental Challenges, Wastefulness, Materialistic, Faith

The Dove to me represents peace, gentleness but most of all FAITH.

It has been awhile since I last made a post here on my blog. Everyday I awaken I find new challenges to face. Most are never easy and without my faith and trust in God I would NEVER be able to resolve the daily challenges. When I got to Georgia, my Mom and I would eat together in her room just before she went into the nursing home. We talked about God/Jesus often and I told her, “Mom, this it the next chapter in both our lives. Nether of us “want” this but it is God’s will for us to move on to the next step in our lives. It is God’s will and we will accept it without question.” Mom agreed with me and we were fortunate for at times we would  be surrounded by Christians who prayed with us and I received a call from my pastor in Fort Pierce where we prayed at a time I needed it most.

With Mom having to leave her apartment and go to a nursing home, with three in a room……that tore me to pieces emotionally minute by minute. Mom kept telling me, “Son I’m ok, it will all be alright.” I’ve learned alot from this. Possessions, materialist things and sentimental objects are only for our physical comfort but it is not something you can take with you when you go into a nursing home, a room to stay in with family if you become gravely ill or when we die (yes we will all die one day, it is the facts of life)…..these are NOT things you can take with you. Now is the time to look around you…..do you have things from folks who have passed on (let it go, you have them in your heart and soul), do you have cards loved ones and friends sent you (throw them out, you have THEM also in your heart and soul), items you keep telling yourself you can use one day (if you don’t need it now, give it to someone who does, don’t hoard).

We are a wasteful and materialistic society. We wanted to sell most of Mom’s things to put into a special fund for her needs but instead, we gave it all away. It often brought a smile to Mom’s face and joy to her heart to know, even the smallest things she had, brought comfort and a smile to others. This is the same for me. If you can “help” give to someone, whether it is by action with food or even possessions you are saving, thinking you will one day use them, think again by giving and bringing comfort and relieving hunger for others. If you have elders, family members or sick friends in a nursing home……call them or even better yet go see them often and let them know they are not forgotten.

You don’t have to stay long, just give them a kiss on the forhead, a pat on the shoulder or maybe even a Sunflower to cheer their day. Too many of us think about ourselves or say, “I have a family to care for, I don’t have the time.” “My job keeps me busy.” or you don’t give but “sell” so you can make a bit of “money”. Selflessness in the long run will catch up to those who have lost the real meaning of life and faith. One day you will may just face being in a nursing home or alone. Be grateful, compassionate, giving, forgiving and don’t let materialistic (objects, money, etc), possessions be your life, it is not worth it…….you have a gift and to know that gift…..just look at the people around you and those who are hurting.

Now I will get off that subject and tell you a bit of what has been going on in the “chapter” of my life these past few weeks. This is a post I just made on a forum to a lady for polio survivors. For those of you who are reading this I just want you to know I don’t always answer replies but just know you are in my thoughts and I appreciate them.  Wishing you the best New Year ever!

“My physical health continues to decline. I have lost so much muscle tone my legs no longer fit snuggly to my leg braces and my shoes are becoming loose and I’m constantly having to retie them. My weight loss has been about 30 pounds in the last several months and I’m still wobbly and without the crutch(s) I could very easily fall…..which I am going to try to prevent at all costs. I have taken precautions, at Dr. Bruno’s suggestion, and these have helped tremendously. Before this deterioration I was able to bend (pull weeds, pick stuff up off the floor) but now the muscle weakness in my backside will (I relied on these muscles to lift my legs) become too weak after only a minute or two. I have found the pain, spasms and twitches go away over time but it appears that is the beginning of the severe weakness and loss of muscles. I don’t know that for sure but it is what seems to be happening with me.

 
At work I am using a wheelchair at Dr. Bruno’s suggestion, actually he wants me to use one at home but I just can’t find the will power to do that yet. My psychiatrist wrote me a prescription to work from 7am to 4pm instead of the 8 to 5. This has helped but by noon I am wiped out! I do my best to conserve my energy and not strain my muscles but when you live alone that can sometimes be almost impossible…..so I adapt and try to compensate in some way. Just last week I returned from North Georgia helping my Mom (amazing women, she helped me get through the first bout of polio) get settled in a nursing home (at her request) and did all I could to clear out her apartment. I did my best to help pack most things but fortunately my Mom had an extra wheelchair which I used often. It broke my heart as she told me who got what of her possessions. There was a great deal of disharmony in the family and most felt it was my decision to put her in the home. I would never have done that but did tell her a few weeks ago, “Mom you need 24/7 care, I’m worried about you and eventually a nursing home is the only way we can go.” A week later she called me, “Son I have no strength in my legs to get out of the wheelchair. My body is worn out and I need to go into the nursing home.” I left right away. Mom is very special to me. She is a partial-paraplegic from breaking her neck causing a spinal cord injury. She was in an auto accident in her late 50s and she is now almost 81.

 
My drive to Northeast Georgia and back home was difficult on my body. I had to pull off the road often because the mental fatigue would slam into me without warning. Physically I did pretty well since I use a hand-control for braking and my right foot is strong enough for acceleration but thank God for cruise control. I took many rest stops as the mental fatigue worsened. The emotional and mental fatigue was sometimes overwhelming. I would think, “Is this what will happen to me if I don’t quit work now and my health keeps going down?” “Will I have to be put in a nursing home at an early age because I did not heed the warnings?” Other than Dr. Bruno I can find no specialist or MD’s who can understand what I am feeling and going through and would be willing to complete the paperwork needed for LTD and SSD.

 
Even my co-workers seem to treat me like the ever-ready battery like I can keep working until I’m too weak to keep going. I just can’t let this happen as I want to hold to my independence for as long as I can. I had to leave work on December 11, 2011 for my Mom and lost a week of work but fortunately our Winter Break began on the 19th and I do not have to return until January 3, 2012. Financially I can’t afford to not to work until I can get a fixed income to start. I am tired, very tired and seem to keep running into block walls with this new battle we are all fighting with polio. My depression is starting to worsen. My problem is trying to resolve/understand two area’s of decline, the effects from the polio and the mental/emotional fatigue. I can’t allow myself to give up, I just can’t. I wish you the very best for 2012. Lets hope and pray Janet that it will be a good one not only for us but our fellow polio survivors and those we love. I can usually get on the computer in the morning when I am rested but in the afternoons it is almost impossible for me to type and make sense. I am reading Dr. Bruno’s book, “The Polio Paradox” and I wish it was mandatory for all health care workers.

 
By the way, my sleep test came back but the doctors who ordered it never got back to me. I had a copy of the report faxed to Dr. Bruno and it appears I have no breathing problems (sleep apnea) but I am having nearly 207 muscle twitches per hour! This is likely what had been waking me every hour on the hour before I started taking Xanax. I can now sleep, most nights, without waking up. All this worries me, I have paid over $5000 in co-pays and gotten no where. Without Dr. Bruno I would be lost! Sincerely and best wishes for the upcoming new year.

 

Once again thank you for your posts.”

James

 

A Double Edged Sword

Winning The First Battle

It has been awhile since I have made a post in my blog and I regret that, as it is, you could say, it is an “outlet” for me to put my thoughts in words. In some ways is a way to “finalize” some negative thoughts and leave them behind and to move forward in the positives and to resolve issues that have been “put on a back burner”.  Some people may think, “Well why anyone would want to publicize their personal thoughts.” Actually I’m not so concerned about what others think, only that if my own issues and resolutions help others and myself, that to me is all that matters. If I can’t be “True to myself” then I’ve lost life’s battle and that is not in my nature and it is not who I am.

For the past few months I have had one relapse after another with returning to smoking. It is becoming worse but yet even though I KNOW it is self-destructive I still haven’t made the “choice” to quit. Until then, I continue to destroy six years of being free from the addiction. The time will come, I’m sure of it, when I will turn away from the cigarettes that have killed so many people I have loved. Sure I could set a date but to me, it isn’t a matter of setting a date, it is when “you KNOW” you have chosen to quit and quit for good. That could be now or it could be next month, but no matter what the date……it will be when I have made the commitment for myself and not for anyone else.

My depression has been controllable and when I do feel it, often short lived, I can deal with it. The doctor had cut me down to one tab of 100 mg of Welbutrin but just recently upped it to 150 mg. My anxiety comes and goes but the Xanax has helped tremendously. The doctor is a bit leery of my taking it on a regular basis but it is the only med that has seem to work for me.  I have so far managed to deal with the stress that arises from work and in my personal life.

The post-polio symptoms are a whole different story. I have gone through one doctor after another and one test after another with no real concrete answers to my continued physical and mental fatigue. My legs are becoming more atrophied and without crutches, I walk like a drunken man. My balance continues to get worse. I now use a wheelchair daily at work and my hours have changed from 7 AM to 4 PM. This has helped but I still find myself exhausted by noon, but…..I deal with it as best I can. My concentration wanders and my search for words when I speak gets worse when I tire. I often go to bed before night falls. I have difficulty going on the computer. I loved working on my websites and participating with others in fighting tobacco use. Most of all I miss my online family and friends.

I recently received a statement from my health insurance provider indicating I have spent over $5000 in co-pay just this past year. I try to look at it this way; at least I have health insurance and a job. My finances are a disaster but I know God has a purpose for me and he blesses me everyday and provides the strength I need to get from day to day.

Thanks to Dr. Richard Bruno, (who answer every email I send him) my thoughts are often positive and I am always looking for a way to improve both my physical and mental health. With his professional advice I have learned I am not the only post-polio survivor (there are millions and I am begining to suspect we are the “lost and forgotten” when it comes to the medical community as I go through these “runarounds” with doctors. I am starting to educate myself as this is the only way I will get through this. I am fortunate to have recently found a physician who seems to know what he is doing and has knowledge of polio. He received his medical education and experience outside the US and that is a plus. I suspect many medical schools no longer teaches about polio and the benifits is has taught them to work with others affected by spinal cord injuries and diseases. Between this new doctor, Dr. Bruno, my own love of life and my religion…..I know I will get through this difficult time in my life…..it is only one of many chapters in my life and this one will lead into a better one.

Having post-polio (with poor balance and mental fatigue) to me is not a good combination with taking Xanax. That is where the double edge sword comes in. I suspect the anxiety also has a part in draining s both my mental and physical strength. But yet,  the Xanax “calms” the anxiety, even though it is likely affecting my thought process and may even have a bit to do with my balance.  Nothing is perfect and I have to make a choice……does the benefits outweigh the side effects? I feel it does and I will continue this battle with post-polio, depression and anxiety just as I fought the battle when I first came down with Type I Infantile Poliomyelitis at age three. I’m not about to let this or the smoking pull me down. Life is good and I want to continue to be productive not only for myself but for others as well. I’m in a turmoil, do I need to stop work and preserve my physical independence for as long as I can or do I continue to work for people who depend on me and possibly shorten my independence? I don’t have the answer to any of these questions but I do know my faith and trust in God is stronger than ever and I WILL WIN THIS BATTLE just as I have so many others!