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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 more minute on the 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 more 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.

1 comment:

  1. Bless you, Linda. You've touched me deeply. This was remarkable, so honest and true, so necessary, so inspiring. Thank you so much for writing it - and for bravely living it!