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Showing posts with label survival. Show all posts
Showing posts with label survival. Show all posts

Monday, November 30, 2015

Happy Birthday My Hair Fell Out

Yesterday was wonderful as my daughter and grandson came a day early to surprise me for my birthday with a fantastic cake they made together. We enjoyed the day and it left me with a smile. I mentioned that my hair was really thinning from the chemo treatments.
Last night my scalp seemed to itch and burn a bit all night long. I tossed and turned and when morning came felt something very odd. I seemed to have my hair standing on top of my head in a lump. I started to brush it out and it came out and kept coming out. Most of it had fallen out and was tangled with the few strands left.
It is an odd feeling even though they told me this would happen. Since I was a teenager my hair has been long. It has been very long.



 I got it cut when I started with the cancer treatments knowing it would eventually fall out.



 That was a bit of a shock but as the days went by I saw my hairbrush filled with hair and in the last few days I could run my fingers through my hair and have a hand full of hair. At one point I cried. That seems silly, knowing this would come but it was an odd feeling to live it instead of say it. I thought about it and think of it this way. If the treatments are doing this to my hair they must be doing something to the cancer. It is not a sign of things ending but things beginning to offer me a chance at life.



In the last few days I have looked out the window and see the leaves that were once vibrant green turn to golden colors and now rain down brown and forgotten for this year leaving the trees bare and almost dead looking silhouetted against the sky. I sort of felt like that. I had once been filled with life and now struggle to stay alive. There have been times I felt more dead than alive. The days have been dreary and filled with rain as in my heart I have felt tears like the rain drops outside. The rain brings water to sprout new life in the Spring. The tears today quickly form to make a determination for life to come. It will be Spring this time next year before I am though with the treatments and it will be time for flowers and new life.
I feel bad I have been unable to get the book of Art, Words, and Inspirations done before Christmas. I thought it would be such a beautiful gift to not only give a book but the hope for the future to see beauty and life. Now I accept I am limited on the time and things I can do. This is taking me so long to do but I want to share the feeling, ideas and hope.
I feel more peaceful now than frustrated with the book knowing what I want to create is something to share any day any time and its time will come. Right now I think of all the love and care others have shared with me. I see the internet and even as I sit here inside, the world has kept me company. You all have reached out and touched my heart. One friend fixed a meal you would not believe with enough I had a variety for days after my other chemo treatment. Family and friends have been so loving and caring. How can I stay sad for long?
Tomorrow I go for another round of chemo and I know know how very sick I become. At one point I really feared I would not see another day and felt so desperately ill I did not mind except I do not want to leave those I love and do feel I have so much more to do in life.
Every day is special and this birthday is one I will remember.....a new day....new hope....and time to fight to live for all of the tomorrows.



Monday, August 24, 2015

Count My Blessings Part One The Pain Never Ends

 

Count My Blessings

Part One The Pain Never Ends


When I think of the title of this I realize I have too many blessings to really count. I have been blessed with family and friends that warm my heart. My little grandson has been the sunshine of my life and my daughter is always there for us. My husband knows more than any the endless days with me groaning in pain and trying my best to go on in life and be able to feel I am not worthless. Together we try each day to do the best that we can.

There are others. There are so many others who have helped. Even with all the help and encouragement the pain never ended. I have lived through a lot of pain in this life but my back and at times my foot never stopped. Even in the night, it never stopped. I began to lose hope and feel so desperate. I did not want to die but how could I live and have any real life? 
 
Even in the hospital the doctors said how sorry they were for me after the MRI and CT scans showed what was going on in my spine. They can not give strong pain medication or I might now be able to breathe and the lung I have left might begin to fill with fluid. They offered counseling.

Eventually I was referred to a pain management specialist named S_ _ _. I will not call him a doctor. I have never been closer to giving up in my life than after one visit with him. He had not read any of my records or considered any other problems I might have. He announced that my only problem was that I was lazy. I was selfish being so lazy to my family and all around me. He said he was going to go in and do a nerve branch block and I needed to get an exercise bicycle.
I told him I had been going to the Health and Wellness center 3 times a week and it was helping so much and I was able to loose 1 ½ to 2 pounds a week. He announced that was useless and a waste of time. I was just lazy.

I asked how he would prevent excessive bleeding and swelling if he did anything to the spine. He paused and looked confused saying he saw no reason it would be a problem. I reminded him on what blood thinners I was on. I knew he had not even read my medication list let alone any other health issues.

He told me to quit taking them for two weeks. I was outraged and repeated what the cardiologist said after the 4 stints were put in. He told me I would die if I did not take them and allow the stints to heal in place. He said to not even miss a single dose let alone two weeks.

The response was to hand me a prescription for pain meds and tell me to just skip a day or two and he would do what he thought was best. He ranted on saying I was worthless and lazy and other things. He said there was no excuse for lazy people like me.
I did what I thought best and never went back. I did not fill his prescription and just went home. When I got home his loud and abusive tirade echoed in my mind. Memories began to flood in of my mother and grandmother.

I remembered my grandmother laughing and smiling and all of us gathering together for every holiday. I remember her as health issues seemed to be stealing away the joy and ability to enjoy life for her, no matter how we tried. The answer for her was medication and more medication. Pain meds, antidepressants, muscle relaxers, tranquilizers and more. Medications to treat the side affects of other pills. At that time it was common and sometimes still is, to treat anything with pills and if that does not work just give more pills with more side affects. She had a whole case full of pills and still suffered with pain as her spine deteriorated more and more. The more it hurt the less she moved until she was a prisoner in her own body. The suffering as she lay with bed sores growing and not even able to turn over was heart breaking.

I remembered my mother, who we had just lost, suffering with spine pain and eventually almost bed-fast and in a wheelchair. She had lived most of her life on so many pills of all kinds. So many pills and each with their own side affects. There were times she drooled from her mouth and could not even talk but always more pills.

There are no words to explain what I felt that night after my visit with S_ _ _. I have never been closer to giving up. I wondered if there was any hope for me at all. I did not want to leave my family and felt I had so much more I wanted to do in life but what hope was there left?

The level of pain I endured made controlling my blood pressure impossible. Terrible pain can not only steal the joy from life but kill a little at a time or even quicker if the heart gives out or a massive stroke lay in the future.
I tried one last thing and agreed to see another pain doctor named Dr. Gera. By then, I had begun to feel there was no hope left for me. You can only live so long when the pain never ends before the body gives up. Our life was filled with challenges. With Albert unable to work we often had to go to food pantries for what little they could help with. Worry about if we could afford the blood pressure medications and others I was on made me dread the day I would end up with a stroke lying in a bed and nothing to fill the hours but more pain. Hope was dim or almost gone.

Dr. Gera did so much more than ease the pain. Dr. Gera restored my hope for life. He not only is an amazing doctor but a person of heart and care for others. He has done so much for me there are really no words to tell. He did the same thing for my husband as he suffered head aches that incapacitated he and left him no peace or hope. What can you say about someone who cares and dedicates their life working to ease the pain and suffering of others?
 



My whole family is grateful for the help he has given me. My little grandson said he has been so worried about me. He said he could feel how sick I was and he loved me and wanted to help me but did not know how. Then he smiled and said he could tell I am doing so much better and seem happier. He smiled even bigger and told me someday I could go outside with him and Papaw (Albert) and we could all roast hot dogs together. They gathered up their things and headed out to cook our supper. When they came in they were smiling as little Zander announced that he cooked my hot dogs himself and did them just like I like them.
 

What Dr. Gera did for both of us helps our whole family. I don't know if he could ever really know what a difference he makes. We had to go and pick up my medical supplies. The woman there noticed I was doing so much better and I told her it was because of Dr. Gera. A big smile came on her face as she told me her sister and sister's husband also went to Dr. Gera. She told me how grateful the whole family was. Her sister had gone to Dr. S_ _ _ and after one visit was so devastated and depressed she had to seek counseling and they worried she might become suicidal. The woman was filled with outrage as she continued to tell of how destructive that one visit had been. Her sister had been told she was just lazy and apparently the same treatment I had received. 
 
I asked how her sister was doing now and she said thanks to Dr. Gera, she and her husband were doing great and so much happier than she had been in years. She told me how her whole family is grateful to Dr. Gera and I shared our story too.
If you know of someone in the North East Arkansas area I hope you share this with them if they are in pain and know the hopeless feeling not knowing where they can turn. I trust this man with my life as well as my care as he works so hard to help in this difficult time of life.

If I wanted to count my blessings I would have to say Dr. Gera is that. He is a blessing to not only my husband and me but so many others.

Monday, March 23, 2015

A Night To Remember

                                                                    
A Night To Remember 

 
           I look at the sun shining and feel the warmth on my face. This past weekend was the first time I could enjoy sitting out back on the deck. It was wonderful. I can not walk well and become weak and short of breath easily but comfortably sat watching my husband and grandson building a little bonfire with one of the neighbor children joining in for the fun. Hen the fire was just right they brought out the hot dogs and even cooked some for me. It was a wonderful time filled with smiles.



           I have seen the world through the window or pictures my husband takes for me of the wildlife that visits in our back yard. Most of the time I have left the house has been for doctors visits, therapy, and occasionally to the store. We used to visit our daughter and family (my precious grandson) often but any travel has been painful and tiring. I worked to gain strength but day by day felt worse. I had caught a cold. That does not sound so bad but for me it is a fear. There is little difference between a simple cold and my lung filling up. I lost all of the upper lobe of my left lung to cancer and have COPD. I hear of so many people my age who all have COPD with some barely having symptoms and others near death. I may not be near death but wanted to keep it that way. I also have some problems with my heart and can quickly build fluids.
           Day by day it became more difficult to find the bright side of life. There were moments I began to think I was more of a burden in life. I continued to try to gain strength but even going from one room to another was a challenge. I live in a world of pain. That is something that wears on more than the body. This past year I have been undergoing treatments on my back that have help immensely. The bones have deteriorated to the extent that there was not way to stop the pain short of killing the nerves. There pain might be there but lessened in the areas where I could not feel it. We can not deaden with nerve branch blocks my whole spine. This is not only a challenging thing to endure but to accept and realize that bit by bit my body is giving way makes seeing hope for the future difficult.
           I have wanted to be active on the internet, writing, and the new books I am working on but even sitting in a chair is a challenge. I have wanted for so long to be active in person and not just on the internet and the telephone but have not been able to do it. Even if my health improved it is difficult to find a place to meet we can be sure is available. Those things depressed me but there was more intense problems soon to occur.
            They can not give me strong pain medications without risking respiratory failure. The pain is so intense that my blood pressure is often dangerously high. The medications for blood pressure can only do so much. I have some wonderful doctors working together to do all that they can for me.
           The problem is, what more can they do? The 'cold' got worse. The coughing was severe but I kept thinking if I did all I could and took the medications and breathing treatments I would get better. I am pretty tough and have lived through some difficult times. I could do it. I could get better and stronger. I got a prescription of antibiotics and was sure that would make the difference. I had once had pneumonia and coughed so hard I broke a rib. I feared the cold was much more than I wanted to admit.
           That was one month ago. I had been enjoying the pictures and sites out out back windows. I am working on a book of Art and Words and Inspirations. I am using my paintings, photos and those my family takes to help me. I am excited about it as I think there are so many times I need a happy thought for the day or reminder to never give up and want to share the feeling of hope.

           Winter had set in with a vengeance. We had not only terribly cold temperatures but also ice. We had some snow but by then we had six inches of ice. The little animals that live in the wooded area here are stressed to find food. My husband got some bags of corn and began to put out portions out back. It was wonderful. The yard would fill with all kinds of birds in the day. Other times we would see deer coming one by one and then two and finally whole groups for the food they could find when all else was buried in ice.


           One deer has only three legs. She cold not stand and slap at the ice with her front hoof because she only had one front leg. I was fascinated seeing the creature who proudly survived the wild with such a limitation. She did not give up. She came every day and as we often watched her out the window the alert creature began to take an interest in us too. She would often stand right outside the window and look in. The heavy shroud of ice began to feel like a prison as we waited for warmer weather and surviving the cold.
           It soon became a nightmare in ice. We live in the hills with curving roads. We had six inches of ice on the ground and more falling as I found myself in a life threatening situation and needing help. I could not breathe.
           My husband called 911 and they assured us help was on the way but the roads would make it difficult and they would be there as soon as possible. The 911 dispatcher maintained a calming and reassuring tone to the call as they gathered as much information as possible to assist in the situation and dispatched Emerson Ambulance. Every moment was a terror as I fought to breathe. My chest felt locked as in or out was little more than wheezing gasps. I could hardly speak and soon felt lurching and jerking spasms as I fought to live and breathe. Every moment was a life time.
           More than ice covered roads presented a problem as our drive is long and steep and was covered in ice. The ambulance got a run at it and made it to the top to turn around getting in a position for them to be able to load me in. That was not to be as the ambulance with the attendants slid unstoppably to the bottom.
            I have fought so hard to stay alive and be able to live my life with family and friends and do something special in the time I have, but at that moment I doubted I would see another day. The EMT Tonya McColum and Paramedic Adam Karr could have called for more help or waited to find a way to assist me but they did not hesitate. They did not wait as I fought to breathe. They had to trudge pulling the gurney or stretcher up that ice covered hill fighting for footing all the way. They braved dangerous footing not hesitating to reach me and render help.
           We got me out of the house, strapped and secured with more icy slush raining down on us. Trying to safely negotiate me to the waiting ambulance and the equipment and help I needed was not going to be easy but it was something to remember. You have to understand that from my point of view I could not see it all but I heard enough to know it took courage, determination and professional calm to do what had to be done for me. Adam and Tonya risked their own safety but did not hesitate. My husband was by my side helping as best he could too.
            The stretcher began to slide faster and faster down the icy slope. The ice from the sky continued to rain down on us and there was no way to stop or slow our descent. I could hear my husband saying he was trying to find some traction but there was nothing he could do. One of them mentioned they could not let me tip. There would be no way to stop for any of us. The stretcher with all four of us gained speed sliding through the icy night. We stopped at the bottom at the ambulance. Even loading the stretcher was a problem as ice had frozen under the stretcher making it difficult to fold the wheels. They got me safely in the ambulance and immediately began care for me and to transport me to the hospital.
           I was amazed as the Paramedic and EMT showed not a moments hesitation not only getting me to the ambulance but immediately starting to work on me. I know after our slide down the icy slope the adrenalin had to be pumping in all of us and knowing how serious it could have been if the stretcher had tipped creating even more stress but the calm was more than the actions to help me. Even the tone of voice was reassuring and an IV established before we even left the drive.
           When we are hurt or in need of help, those we call to are in our mind at the moment but we often forget the courage and dedication these people show every day in so many different situations. When there is a fire we are so grateful but if it is not us in need do we remember these people work and live at the ready to assist and even risk their own safety to help others? When we are afraid or needing a police officer do we remember in other times he or she is risking their lives every time they answer a call? I want to always remember and be grateful to all of those who work so hard helping others in so many professions. The people who brave the freezing and stormy weather to restore our electricity and so many others are often forgotten in sunny days.
            When we are in a hurry and an emergency vehicle is approaching, the moment we take to pull aside and stop could make such a difference. The drivers are flashing lights and sirens for a reason and every second could count. If it was my house burning those few minutes could mean so much. If a prowler was breaking in to my house what a difference a minute or two could be to the outcome. What about the safety of those who hurry to aid others? Every trip and every day they stand ready to help.
           I was not sure I would see a tomorrow but they got me safely to help and took care of me all the way. Any one who pulled aside, if there were others out on such a night, helped me to safety. too.
           I spent time in the ER then to Accute Care and after that to a regular hospital room at St. Bernards and have to say I not only had excellent care but constant positive reassurances and interactions. I was not just short of breath, I needed help and that is what I got. I am so blessed to have such wonderful doctors and medical care, family and friends, but also all of those along the way who work each day reaching out to others. What a night to remember.


Wednesday, October 1, 2014

Today Is The Day






             I posted this pictures asking what would Today Is The Day mean to you. I have heard so many responses and each different. When I thought of it my feelings were not those of hope filled with the beauty of life. I had begun to feel hopeless and tired. When I say tired, it is more than a lack of sleep. When I say tired, it is an immense feeling through and through. I have hurt so long with no way to escape the constant pain. I have tried to adapt and adjust and find ways to go forward and find meaning in life. In the last few years I have survived cancer, heart issues and even more than that. I began to feel tired.

            When I wrote the book telling the story of part of my life called I will Not Give Up...Not Today...Life is a Journey    ( US    http://www.amazon.com/Will-Give-Today-Life-Journey-ebook/dp/B00730UT6A/ref=la_B004PVDVR4_1_3?s=books&ie=UTF8&qid=1412205803&sr=1-3     and UK   http://www.amazon.co.uk/Will-Give-Today-Life-Journey-ebook/dp/B00730UT6A/ref=sr_1_3?ie=UTF8&qid=1412205856&sr=8-3&keywords=linda+nance   I  intended to not just tell about my life or things I had done or plan to do. I wanted to share the thought that as hard as life can become, we can not give up. There may be so much beauty and happiness ahead we would miss if we fail to find ways to reach out in life. I still believe that and have been delighted at the responses to the book. I wanted to write something that could reach beyond the pages and touch or help others. I wanted to be able to use words to share life and created hope.

            That brings me back to this post Today Is The Day. I had said so many times that I would not give up....not today, but had begun to question if that day was near. Is Today the day????? It is not a suicidal thought but one of lost hope. I have worked most of my life to overcome problems and try to go forward in life. I have worked very hard to not just be alive but to live life the best that I can. I do have some health issues to deal with. I do not have to do anything but quit working so hard to keep going and find my health declining.

            Living every hour in pain takes a toll. I finally was able to find a doctor who prescribed medication to help but the pain is still unending. I think of my beautiful grandsons and children and see the trees beginning to change color and realize what a wonderful world and precious life this is.

            I recently had a procedure done to block the pain in a portion of my back that radiates all the way down to my foot. I have to admit I was afraid. When you deal with nerves and the spinal cord there are so many things that can go wrong. My foot still has broken bones that after being pinned re-broke. My bones are now too fragile to hold the pins. Every step has been with pain and even sitting resting, it often throbs.

           I had been warned that the procedure was painful and it was. What happened after that amazed me. I did have some numbness down the leg as if it was partly asleep but I did still have feeling and could tell if it was being touched but I felt no pain. My back in that area was not hurting, my leg did not have the terrible cramps and pain and even more than that.....my foot did not hurt. For 14 years I have lived with the pain in my foot. It did not hurt. I must have appeared unhinged as I sat moving it back and forth watching it and even thumped it on the floor. My husband looked concerned and asked if I was alright.

            I had to smile and laugh saying “Oh yes. I am more than alright. It does not hurt. I can not believe it. It does not hurt.”

            I know there are many more procedures to go and there are no guarantees but I have hope. I do not hope to be fully healed and young and healthy because I know that is not to be. I hope to be able to enjoy the wonderful people and times in this life. I hope to be able to make a difference and do many things. I hope to be able to share the love of those around me.

            Yesterday is gone and will never be again. Tomorrow is not yet here but Today is the day..... May we live for today, learn from yesterday and look forward to tomorrow with hope and joy in our hearts.

            Today Is The Day....... yes it is. Every new day is the day to remember we can do so many things if we do not give up....not today.




 I love to use my water color paintings to be able to add words to share....





Monday, August 4, 2014

From Then To Now and On To Tomorrow










          I have wanted to write this for some time but finding the right words to share this part of a journey in life has been a challenge. There are so many things to tell and complicated in many ways.

          I first walked into St. Bernard's Health and Wellness center almost a year ago. I say that I walked but I hobbled, shuffled and struggled every inch of the way. I was dragging my little trolly thing that held the big bottle of oxygen I have had to use since the cancer made it necessary to remove so much of my lung. Constant fatigue was something I had been living with as I tried to survive but the heart issues were almost more than I had the strength to overcome and continue to believe I could do it.... what ever 'it' was. The building was beautiful, clean and has fantastic huge windows all around. The impressive sight lasted only moments before the fear of falling took over making my way to begin sessions my cardiologist has scheduled for rehab, after I had problems resulting in 4 stints in my heart.



          I can try to explain how tired I was but the truth is that I was almost bed-fast at that point. I had become so weak that just being alive was a challenge. The thought of an exercise program seemed almost impossible but the doctor thought it necessary and I was going to try my best. I was trying my best to stay alive.

          Many people go to a gym to get into shape or loose a bit of weight. The outlook and pressure to accomplish goals is quite different from someone who feels they are working to live or die and have no way to tell what the future would hold and those who enjoy health and vigor with no understanding of the feeling when those wondrous things in life are no longer theirs to enjoy. The moods and reactions also may differ from person to person. I saw some people bursting with energy and health ready to do amazing things. Other people seemed almost angry feeling pressured by doctors to endure things they felt were beyond them. Seeing the changes after they began their routines was amazing. I had no idea what to expect or what to do. I felt vulnerable and fragile but determined to try with all my might.

          From the moment I first entered there were people there smiling, helpful and supportive. Working with the public allows a person to develop a professional demeanor being friendly and helpful in what ever capacity they have but these people radiated warmth and welcome. That helped but I had a long way to go even to get from the front door through the lobby and up the elevator to the place I needed to be.

          You can try to be brave but I was afraid. I was afraid I would not be able to do what I knew I had to do to regain my strength and improve the circulation and keep the stints open. I was intimidated in unfamiliar circumstances and surroundings. The last thing I wanted was to have another heart attack. I knew no one there. Everyone where I was going had suffered their own problems and health issues. Each one was there working toward goals of their own and for their own reasons. Some seemed determined to push through their hardships with amazing courage. They were not doing it for their doctors or others who might see or know of their work. They were working to survive. Some seemed almost angry and appeared or expressed their feelings of hopelessness and fruitless efforts doing things so difficult for them they were miserable. Those attitudes and irritated angry individuals were met with the same smiling encouraging attitudes of supportive help from the staff as those who arrived smiling and ready to begin their work. I do not know what I appeared to be when viewed by others. I was just so very tired and afraid.


           The staff was supportive and caring as they made sure I safely made it to the cardio rehab area. What I found there was amazing in many ways. Every precaution was taken to protect me and help me. The medical staff there for us were so competent but also radiated such a positive and professional manner you could not help but smile and know you could give it a try. When we arrive they took our blood pressure and pulse, respiratory and hooked up the monitor for the ekg I would wear whenever I exercised. Knowing they could see what the heart was doing was a bit more reassuring but also knowing there was such caring and competent staff who were not only there but attending to each of us the whole time and a doctor also in the building had me ready to see if I could do this thing what ever it was.

          They have an amazing array of machines to exercise in many ways. I have a crippled foot and severe back problems. I live in a world of pain and every step making this thing I was about to do a challenge. Walking on a treadmill is impossible. Many of the things some can do I can not. They did have a machine that held my back in alignment and worked not only the legs but arms as well. It was work. It was a lot of work.

          There were many other people there with their wires and electrodes in place ready to start their own routines. I felt the outsider but that feeling was short lived. There are many things in life that are contagious. Attitudes can be something that is shared too from one to another. Even the other patients had such a positive outlook and a smile for the new comer. Jim and Vicky and all of the others who worked there made you feel not only cared for and protected but encouraged and supported in an understanding but encouraging manner. They may think they work there and are doing their jobs but they are doing so much more with the way the work with people. They are touching lives and helping others to find a way to not only stay alive but live and smile, feeling hope.

          My first session I worked as hard as I possibly could and lasted 5 minutes before I was literally shaking and feeling as if I had hit the limit of my strength. I felt a fear not knowing if I would even be able to walk to leave and go home but I knew they did have wheelchairs if needed and they would be there for me. I did not want to have to have help or a wheelchair. I wanted to make it on my own and walk out just as I had walked in, however slow it may have been. I did and I made it but I noticed they watched after me making sure that I was alright That was the beginning.

          The insurance only allowed a certain number of visits and I was determined to get the most out of each visit that I could. There were times that I hurt. I was always tired. The tired I felt was not the same as I had know in healthier times. This was a tired that felt as if the life had drained from me leaving very little left.

          I suffered several set backs with times I could not go to do the work so necessary for me to improve. I did not just have the heart issues to deal with. I had the limited pulmonary function from not only COPD but also the removal of the whole upper lobe of my lung from cancer. I had a mass under the aorta that gives a bit to think about and great concern about blood pressure. I had been on many medications trying to control the blood pressure but had been known to run 220/110 from time to time and most times ran unacceptably high no matter what we had tried. I believed and they saw from different times in the hospital that the level of pain greatly affected the blood pressure. I lived in a world of pain from the back, foot and many other areas of the body. They were afraid to give pain medications because one of the major issues was the fact that in reducing the level of pain, the medications also reduced lung function. I understood the general idea that it would not do any good to stop the pain in the patient if I went to sleep and lung function decreased killing the patient. Most times I would have gratefully taken that risk just to ease the pain. The doctors were not willing to take that risk so I pressed on with this new program to keep the blood flowing and stints open.

          When I said that I suffered several set backs, they were ones that were not just limiting or inconvenient but things that put me back in the hospital. A simple cold can become a big issue for me and pneumonia can be life threatening. If I thought I was tired when I started, that round gave me time to wonder if there was any hope at all to keep going. Was all of the pain, work and effort just making me more miserable for nothing? When I got back to the sessions at St. Bernards Health and Wellness Institute where I had been doing the sessions the doctor had ordered, I was again met with people who seemed so confident and encouraging it made no difference if I believed it would help or not. Their continued care gave me the strength to do one more session....one more minute on the machine....one more stroke of the handles. One more. One more session, one more day, one more reason to hope I had a chance to live.

          I will not tell you that I am an optimist who suffers no doubts or depression. When I fell, everything on me hurt. Falling was a fear that was a very real threat for me. I ended up not only in the ER but admitted. When they had finished the X-Rays and tests the doctors had a serious talk with me explaining what all they had found and seen. The condensed version is that I am getting old and worn out. They did not say it in that manner and were very kind and trying to not depress me with the diagnosis and prognosis but I had demanded honesty. The only way I can emotionally deal with all of this, is if I understand what I am facing to try to make a plan of what I will do. They did not want me to give up but to understand there are limitations to what I can do or expect from the work ahead of me. Nothing they told me was news but it confirmed how difficult it would be to accomplish improvement and how painful and demanding it would be.

          I went back and continued to work one session at a time and minute by minute with amazing results. The blood pressure was coming down. It helped with the back problems and the breathing became much easier and greatly improved. I began to feel a passion with every visit. The other patients or people there in the programs of their own were such a blessing with their friendly and courageous attitudes working and pushing forward. 

 
          One day as I was sitting at the table off to the side where my blood pressure was checked and the electrodes for the ekg were put into place I watched. Before me were row after row of machines of all kinds. A group of other heart patients were steadily walking on the treadmills there. Step by step they continued each at their own pace. As I watched the people, their expressions and their progress, the thought occurred to me that they were not walking.....they were marching. They were not marching forward to a destination of location or to a challenge of event such as a soldier would in battle. They were marching to an objective of health and life. They were an army of people working side by side to survive each encouraging those around them but also in a solitary mission of their own.

          I had an occasion of what they diagnosed as a TIA or some call a mini stroke. It is more than the loss of movement and feeling. At the time I felt such confusion and could not understand why my left arm would not move. I did not understand why my body had become so heavy and I felt numb. I know what the symptoms mean especially with the problem I have with blood pressure but could not think any better than I could move.

          It took a lot of work to get it all going again but the program and people there were a life line for me and I was able to go back and work on again....one more time....one more step, one more repetition, one more minute.

          There were times I wanted to quit but feared I might not only decline in health and ability to function but actually die. The thought of death does not hold the fear for me it does for some. There are times I wondered why I had worked so hard and hurt so much when I could have just given up and let it all end. Let all of the pain and hurtful things in body and mind be over was a thought that battled with the desire to try just a little longer and harder.

          I would get online on the computer and hear such wonderful kindness and thoughtful words across the screen from so many people. They will never know how much it meant to me seeing their encouragement and expressions of hope. I would look at my family and friends and see that something special that makes you try a little longer or harder. I would look at my grandson and know I could not give up. He is my little ray of sunshine. He makes me smile and feel in my heart there is more in life that I need to do. He believes in me and I could not give up and leave him.

          When he was little he would rub my hands when they hurt and it always brought such a smile to my face and did ease the pain. Was it the feeling from the rubbing, the relaxation from having the hands messaged, or the feeling of love he radiated as he did what he could to make his grandmother feel better that made it all better? I told him he had magic in his hands and it made me so much better. Love is magic. Love can do amazing things and this little kindness and effort did so much and brought a smile not only to my face but to my heart. He believed in the magic.

          As the years passed he grew older and smiled at me one day. “Mamaw (That is what he calls me) I don't really have magic in my hands, do I?” I had to laugh before I answered.

          When I told him Mom, my daughter about the conversation she frowned and asked me why I tell him such things? I told her exactly what I told him. “To me, he has magic in his hands and I will tell you why. When he rubs my tired old hands they do feel better. Is it magic, rubbing or knowing he does what he does because he loves me. Feeling like you are loved is a magic feeling and it makes the world brighter. Love can make you feel better. That is magic. Yes I do think he has magic in his hands.... and he makes me smile.”

          She had to laugh when I told her and he thought on it for a while before he answered. “OK Mamaw. If you think it is magic I guess I will believe in magic. I do love you.”

          What does it take for a person to find the strength to go on and keep trying when life gets hard and things cause pain? I really do not have the answers but believe it is a combination of things. I can not refrain from expressing how much I believe in a higher power. We can call God by many names but for me he is ever there and I believe in the power of prayer. Is it the combination of positive thoughts from others or an answer from above? When I hear from all of those who remembered me, there is a power to inspire me to never give up. To each and every one of you who have taken the time to communicate with me, weather I was able to answer or not, I hear you and feel so much from you that I want to thank you and let you know that you make a difference. Finding the strength to go on for me is a combination of many things but it is not giving up each and everyday. I do not know what tomorrow will bring but I want to live the best that I can for this day.

          I am not eligible for the continued cardio rehab program the doctor prescribed but have been able to continue working through the St Bernards Health and Wellness Institute as a member there and now have finally been able to find a pain management doctor that seems to be doing his very best to help me find a way to survive in this body and this life. With all of this time working there, amazing things are occurring a little at a time that are in themselves like small miracles. Combined exercise and medications are showing my blood pressure near normal. That is something I have not seen for so many years I can not remember when it was something for me to have. I could breathe easier. I could do more. We had always checked and kept constant monitoring of my oxygen levels as I worked but we were seeing it holding in not only safe numbers but really good numbers. After all of these years I could actually exercise and still breathe and not have my oxygen level drop. We did a night study to see if I could survive on the pain meds while sleeping without the oxygen level dropping..... and this is without the oxygen. I did good. I did really good. Is it the work or a miracle? I am the same person with the damages of life and illness but doing so much better is so many ways.

          The new doctor is working with me as a whole patient and not just the complaint of pain. He seems concerned to help me as a person and not just complaint or number on a chart. I had one doctor who ignored all about me except his own narrow view and was determined to treat me like with a total disregard for other health issues and go into the spine doing what ever he decided I needed to do. I asked what would happen to my spine when he went in with me on all of these blood thinners and he ignored it. I demanded to know if the excessive bleeding would not be a problem and he arrogantly announced I was to quit the blood thinners for two weeks and he would …....I have never felt so frustrated and endangered. This man could kill me and his whole attitude was that my problem was that I was lazy. If I worked harder I would be in better shape and I needed to get an exercise bicycle and forget the wellness center that had seemed to help so much. He said it was a waste of time and I should do as he says if I do not want to live in severe pain for the rest of my life. I could go on for hours about this man but will keep it short and say there is no way to describe my disgust and anger for such a person who is called doctor. Who knows how much suffering, despair and damage this man has caused to others? When I asked him if he would guarantee I would not have a heart attack or the stints close up killing me he glared at me. I reminded him the cardiologist told me not to miss a single dose and he prescribed the rehab that had helped so much, he did not answer for some time as he gave me what I thought was a look of contempt. He finally told me he would check with the cardiologist and then begin what he had planned for me.

          The cardiologist made it clear I was not to stop the blood thinners or anyone go into my spine at this time. I decided I would never go back to this man or allow him any treatment for me no matter how bad the pain was. I could quit taking my heart and blood pressure meds anytime, lay down and die and suffer less than in his hands. He had left me feeling so helpless and hopeless that I faced a future with no relief at all from this body that trapped me in pain even in the late night hours robing me of sleep, peace and hope to keep going.

          I did not know if the new doctor would accept me or what to expect from him. What I have seen so far is a competent and caring doctor that is working with me and the other doctors to safely help me. I am now on mild pain meds and muscle relaxers that help. I can not take strong medications and safely be sure to breathe through the night and an addiction to the drugs would only result in building a tolerance requiring higher doses with more side affects. Physical therapy has been prescribed in addition to the medications. We were back to the problem that it is not one nerve involved but the whole lumbar and sacral region and the respiratory problems and other health issues including a crippled foot. Working in water was what was finally decided. Working to strengthen and increase flexibility without doing more damage to old joints and bones seems safer in water. I know it will tire me and make me sore and hurt but the pain from working to get stronger is so much different that pain from more injuries in falls or as inactivity slowly or quickly erodes what strength and ability I have left.

          I am doing it. I am in a program of physical therapy at the same place and going to continue to use the machine that has helped me so much so far too. I have been so pleased to meet and am getting to know them in this department too. It is a relief to be in the hands of competent and caring people who encourage and inspire you to go forward in challenges that could make a whole new future enabling me to do more and not only be alive but live life. Each and everyone I have met in this place from the first I see when I come in the door to the professionals who care for me and help me work to the wonderful people there working each in their own way sharing a smile and encouraging word are a blessing.

          I am ever so thankful for the caring and dedicated physicians that have worked to help me stay in this world and do better. The nurses and medical personnel are often overlooked in all that they do but I will never forget all they have done for me.

          Knowing that yesterday is gone, tomorrow may never come but today is the blessing I have to do with as I am able and choose, is a thought I keep near to me. I may not be promised tomorrow but I will look for tomorrow and things I have in my heart to do. I want to continue to be here on the internet for as long as I can sharing things and grateful to all of those who share with me. I want to finish the book I am working on and the next two novels after that I already have in mind. I want to be able to help my grandson with the book he has started and the story he is working and developing. I want to be able to laugh and share good time with family and fiends. I want to work with children and schools and share the idea to never give up. I want them to realize that what they learn is not only the grade that they get but a gift that can help them in all of their lives. I want them to see that they too can make their dreams come true if they are willing to learn all that they can, work as hard as they can, believe in themselves and never give up. I can try to do these things and have hope for the future.

          I know I will never be well or young again but I can and will try to be the best that I can be and do all that I can for as long as I can. I came so close to giving up. I almost thought it was time to finish the books about my life I had started with the one I called I Will Not Give Up....Not Today....Life Is A Journey and write I Did Not Give Up...But Don't Know About Tomorrow...This Journey Is Almost Over. I wrote that book not to tell about my life but to share the idea we can not give up. I tried to be honest in sharing thoughts of good times and some that were almost more than I could endure. I can honestly say now that I am not writing that second book and not giving up.

          There is so much more in life I do not want to miss. There is so much more that I want to do. There is so much I am grateful for and feel blessed. I will be back soon but am wishing you each happiness, health and bright days ahead.




Tuesday, January 14, 2014

This Was Hard To Write … But...I Am Still Here








         It has been some time since I have been able to write one of my blogs. I have had dozens of ideas but each day has been a challenge to just continue to live. I promised to be honest in this blog and the things I share as I go along but that is not always easy. When I say that I get tired, very tired, it is something that most people will never fully understand. When I was young I would play until I was so tired I could not keep my eyes open. I was very tired but it was a good tired. I could rest and feel renewed to play another day. As I grew older I could work until I could go no more but it was a tired that found rest at the end of the day and a new day refreshed. When I became ill I got tired and it was not a good tired that rest could refresh. It was a desperate tired feeling that found no ease. When I became more ill, I often feel tired as if being alive is difficult and facing the challenges that life seems to never run short of, could be more than I had or have the strength left to face.
         I have tried so long and so hard to not only be alive but to live life the best that I can.. I have tried to look for hope and believing that each new day is a blessing. I have tried with my art and words and books and involvement with others to share that feeling of hope. As the family circumstances became more dire my hope began to dim. I began to try to survive. When you can no longer find a way to strive in life, looking forward to each day as a blessing, and are reduced to surviving, you are not in a good place. Words of hope and joy no longer came to mind.
           When I looked out my window I could see the sunshine but not feel it in my heart. I could see all of the people around me here at home and by phone and internet but still feel alone..... and tired. I lived in a world of pain that never ended. In the middle of the night if I finally fell asleep the pain would wake me. It was so intense the blood pressure was extremely high. They could not prescribe pain medicine without close medical supervision because it could diminish lung function. If my lung began to fill with fluid, I would be in trouble in an unbelievable short period of time. What could help me, could kill me. I understand all of that but could not afford the doctors that could help me. I have been seeing a lung specialist that is an amazing doctor and helped keep me alive through a clinic that helps those with no insurance or medicaid. They could not manage pain meds.
         I finally got Medicaid and thought it was the beginning of being able to recover enough to have a life and be alive. By the time I finally got it, I had a heart attack, blockages of 80 percent on one side and 70 on the other. They went in and put in 4 stints at one time and I felt so much better.
        The blood pressure was still an issue but I found out that since I had the Medicaid I could not go to the clinic as I had for years and many doctors are now unable to take new Medicaid patients. The primary care physician tried and could find no one closer than a 3 or 4 hour drive and that was a maybe for a lung specialist.
That was when my left side went limp during one of my rehab sessions for cardio function. I have been lucky and blessed to have regained most of the use on that side. It is still a bit slow and numb but better. The blood pressure was out of control. I am on 16 different prescriptions for blood pressure/ heart, breathing and respiratory, thyroid, blood thinners and that sort of thing.
        The new doctor prescribed pain meds that have been such a relief. I am more able to be up and around. I am able to be awake and not feel like I am loosing my mind. My blood pressure began to come down to almost normal. It is amazing until..... it is time to get my medications refilled. I still need the blood pressure meds. I do not want another stroke or heart attack. I have lived through cancer and having most of my left lung removed. The last time in the hospital they explained that I have a degenerative bone disease that has progressed to the point that there is nothing they can do except try to manage the pain. I have known that for some time but it is not easy to live with especially when you add in all of the other things.
        The Medicaid pays for 6 of 16 prescriptions. The blood thinners are all that will keep the stints from blocking up again. I had pressure increase in the heart not long ago they went in and did another heart cath and I am still here. I on prescriptions they feel are necessary to keep me going...... which ones do I need the most? If I get them filled, will I have the money for gas to go to the cardio rehab that has helped so much? If we do those things will we have the money for groceries? Then there is the big fear that seemed so oppressive especially during the extreme cold weather we had and will have again....will we have the money to fill the gas tank to heat our home? These are things that were ever present on my mind.
        We did not live extravagantly heating the house toasty and warm. We heated only as necessary and only two rooms during the extreme cold. At night we are usually under the covers and we were under a lot of covers. It was cold. I saw no way we would survive month to month and eventually the gas will be gone on a little over $500 a month.
        When Albert fell and fractured his skull it shattered more than the bone. It shattered our life. He tries day by day but some of the damage is permanent. He does his best but is surviving constant headaches and many other things that limit his life and ability to work. He applied for disability but was denied saying he might be able to be retrained. He has appealed and we will have to wait and keep trying to survive.
        All of that brings me back to when I looked out the window seeing the sunshine but feeling no sunshine in my heart. I would like to say that things have all worked out and I see a bright and shining future but I can not see the future.
        What I am now finally able to see, is this moment. I am looking at each day. I felt so close to giving up. I felt myself going down hill until I could hardly function at all. I see the smiling face of my little grandson and my daughter smiling but looking a bit helpless and worried. I see my husband as he takes me for each rehab session and patiently waits reminding me how important it is to continue. I see comments here online and from friends I talk to on the phone.... and I am not as alone as I was not that long ago. I took the time to pray for me along with those others I hear about who need help and realized that I am not alone.
        I got a phone call and the doctor that helped me so much in the clinic found a way to accept me as his patient. He did not forget me and I have hope.
        In the new book I wrote with my grandson, the ending is something a bit different. It is a children’s book but the end is one I think we could all relate to. Things in life are not always as they seem and some things we are never really sure of. Some things require faith. One of our neighbors stopped in to visit today and could not say enough about the little book. She and her husband both read it and she smiled as she told how touched they were. She said they loved the whole story but the ending was one they will never forget.
        I went out on the back porch and sat with our little dog this afternoon. 




 Last night I went and sat out for a short time and looked up at the sky. The moon shone through a haze of light clouds. There was no bright shining light from the heavens of the night. There was a dim glow with clouds growing denser and a chill in the night air. Life can be that way. It can be cold with storm clouds brewing. It can seem dark and almost hopeless....almost. With the afternoon sun warming me where I sat and seeing the little dog romp and play, I looked up at the clouds parting and the intense blue of the sky through the trees. The trees are bare making patterns in the sky but Spring will come again. The leaves will bud out in vibrant green. The dogwoods will bloom. The flowers will brighten the world. The darkness of the night before was gone. The clouds were parting instead of building to blot out the sun. All hope is not gone. I have no idea how things will work out but life does go on. I still get very tired. I have had to write this a little at a time but I am writing it to share the idea that as I have said so often. We can not give up. When we give up is when all is lost.
        I have a favor to ask. I need your help. I want each of you who read this, to take the time to tell someone near you how much you love them. We often feel it but do not really say it. A smile can often do wonders. Take a happy thought and pass it on. A simple kindness can mean so much. Reach out to others and try in what ever way that you can. So many here online have reached out to me and they will never know how much they have helped. They have tweeted and shared on twitter and facebook for me and I have not been able to return the favors. I often am too tired to be able to sit at the computer but for very shot times and when my back is acting up am not able to be here at all. When I do come back, there are words of kindness, hope, encouragement and prayers. I believe in those things. You have touched my heart and given me hope.