My Email to Dr. B on Friday Janaury 6, 2012

It can be a winable battle....I just have to believe.

Dear Dr. Bruno,

Today was not a good day. I went back to work this past Tuesday after three weeks off. Of course you know two of those weeks were traveling over a thousand miles round trip, helping and encouraging my mom to prepare for the nursing home and then trying to help get her apartment cleared and mainly just letting her know I would never be far from her even if only by phone. I used the wheelchair alot while I was in her apartment complex as she was practically bed ridden. The use of the wheelchair made life alot easier for me as I was able to help look after her for a week and then use it to pack boxes, take out the garbage and stuff like that. Had it not been for the chair I think I might have been in a lot of trouble both physically and mentally. My drive home was a bit “scary” as it was on Christmas Eve and the traffic was heavy and that is when the physical and mental fatigue really set in. Fortunately I could stop whenever I saw a rest area or pull off to a vacant parking lot. There was times I wasn’t even sure I would get home safely as I’m sure I made a few careless driving mistakes but as the saying goes, “God was my pilot.”

During Christmas and the week following. I the physical fatigue once again set in but I would use a crutch(s) and this helped alot. I had the thresh holds replaced in a couple of doors so as to prevent stumbling and to help in the event I should have to start using a wheelchair here in my little “Florida Cracker House” as I like to refer to it. Mentally, my anxiety worsened as did the depression. Also as you know I sent a letter and the Long Term Disability papers to my “shrink” asking if he could give me a script to stop working and help me get the LTD. There was times during that week I felt worthless and couldn’t help but think that if I don’t start making changes soon in my life, like my Mom at 80, I could also very easily lose my Independence and end up in a nursing home.

On New Years Day I went to Church and had my first communion. When I left I felt spiritually uplifted and of course this improved my mental and physical well being.

When I got back to work on Tuesday, that wheelchair I keep at my desk looked mighty good. It was hard getting up at 5:30 AM (as the week progressed I started having muscle twitches and fatigue in the upper extremities which made it hard to get out of bed) and getting to work at 7 AM, but after awhile I perked up and got down to business. By noon I was wiped out (this seems to be getting worse as time goes by) but I would keep going until the end of my day at 4:00 PM.

Today everything began to fall apart. I was trying to reach a payroll deadline and I no longer had a workstudy student to do the running for me (taking things to another building on campus where the Payroll Department is located) and would often “sneak” (others said they would do it for me) out of the office in my wheelchair to make immediate deliveries of hardcopy paper work to prevent delays in the payroll process. The first hour went well as I was alone before most people start coming in at 8 AM. Then the pressure started, those (supervisors) I needed to sign off on paperwork had appointments scheduled off and on so it slow my work down. Problems started coming through and I had to get on the phone alot. Around 10 AM I was going down a narrow hall in our department and one of my supervisors came running around a corner and nearly feel into me as my wheelchair is quiet. I caught her by the waist to keep her safe from tripping or falling. There has been a few times I have actually, almost, backed into another co-worker. Doors are getting more and more difficult to open, I keep bumping into office furniture, walls, etc. After the close accident with the supervisor I couldn’t stop feeling bad as I felt it was my fault for being in the wheelchair and she could have been hurt. People on campus I have known for years will not even look at me in the face when I am in the chair. Some look at me with pity and others with caring……a few treat me as they always have, with a smile and greeting.

Anyway, after the close accident I parked the chair at my desk and started using my crutches. I have lost so much muscle in my legs that when I do walk they are baby steps and almost like that of a 90 year old man. I now refused to use the wheelchair at work other than at my desk. Stress, guilt and all kinds of other emotions started to catch up with me. I would snap off to almost anyone who spoke to me and finally at noon, when I felt sure the Payroll deadline had been reached and all was well…….I nearly walked off the job (I was tired, weak and my hands trembled) but went to my boss and told her I would not be back this afternoon (I left at 12) and turned in my time-sheet and leave form for 3 hours sick leave (I am using that up far too fast now and I don’t know what I will do if it runs out, I still have quiet a bit but just the same it is going fast). She said, “James I am worried about you.” I tried to explain about the fatigue, my quickness to anger and the closs accidents of the morning but I’m not sure she fully understood. When she repeated she was worried about me, I said, “I am worried about me too. I don’t know what else to tell you.”

Dr. Bruno, I am NOT going to allow any of this to pull me down without getting up and keep fighting this second battle with polio…….I just can’t let all these years of hard work fall apart on me now. If Dr. B (the psychiatrist) does not approve my leaving work then I’m going to be lost. Financially I will collapse and God only knows how I will deal with this physically and mentally. I will, I suppose keep trying to keep my chin up and go on working for as long as I can and they will have me……I just don’t know anymore. I still have strength in my lower extremities even though the decline has been severe this past years, I have managed but now that something seems to be going on with my arms and joints, that seems to be a warning to me that something has got to give, and very soon. I just can’t and want allow myself to lose my independence. When I caught polio I beat the battle and now that it wants to fight back at me…..I have got to find it in me and my faith to fight back.

Thanks for hearing me out as I know you are a busy man. My apologies for my grammer and spelling, plus I’m ab bit to tired to reread what I have typed. Tomorrow I’m sure will be a better day, actually I have my first Bible Study tomorrow morning on the Book of James

Respectfully and Appreciatively Yours,

James

 

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