Mary-Anne’s Chronicle – Journey Through Disability from Victim to Victor

Welcome fellow travelers:

Sorry for the time lapse but sometimes I just can’t make it through the day other than making it through the day.

I had some surgery and that turned my system into a tailspin and I have been down and out for a couple weeks here. I am back healing well. All the tests will be back and I will find out on October 31st, exactly what this specialist thinks is the “cause” or “causes” of my deterioration and pain and if and what can slow it down.

I must admit I just want it all to go away, that is going to be my only victim statement but I do and am very tired and wish so much for a day of peace and no pain.

Let’s take another journey along the road of my life as we travel hopefully getting closer to some answers, some relief, alot of help to get my life back together and some awakening to everyone who reads along about illness, pain, deafness and our very troubled medical system.

Tonight I start with:

What it takes to live in a world where you are in constant pain, disabled and/or are chronically ill or deaf.

It never occurred to me as a nurse or as a patient for years that becoming disabled, living with chronic illnesses, unrelenting pain or even deafness would impact every minuet detail of my whole world. I do not think any of us even think about any of this in the medical profession even though we work around it every day. Nor do I think as well people we even have time to stop in our daily lives to think about alot of what could make us better as people and our lives better. So no wonder we would never think about what I would consider the unthinkable until it happens to us personally. Even as a medical person you don’t stop and really feel or become a part of the illness process. You are just what you are a “caregiver.” I consider myself a very sensitive person and even sat up all night long with patients who were in pain or mentally trying to deal with dying. I would cry with them, hold them and yet now that I am in the condition I am in and I look back I was feeling all of those feelings for me. I really had no idea what that person was experiencing and for sure had no idea what their pain felt like. I really didn’t even know that I didn’t know that I was incapable of being a real part of what that person was experiencing on a life changing level. It amazes me now being chronically ill how not one part of my being, my body, my life, my routines, how I think, feel and act have all been affected by my illness/pain and now deafness. As I said on my front page I am no where close to the person I was before I became ill. I was taken from the only life that I knew, was trained for, could identify with into another world and it truly is another world that I live in.
I studied about the process of being ill, being disabled, experienced it as I trained to what I considered to be an expert, yet now I know knowledge “about” something is a far cry from knowing what it is like to really “going through” something. I don’t care how much I thought I knew, experienced and even felt I went through with those who were my patients, I now know even the greatest minds have no clue what living inside of my body is like in any sense of the word. Not only did my body change because it was and is dealing with stressors, sensations, loss of how we did things for 35 years but also how I feel inside. I don’t know me anymore. It is like I am having two lives. Now I pray I end up having three in the end of this journey.

That is why I am writing this piece. I want to share this with you because it doesn’t have to be your whole body, like chronic illness. It can be just a part of your self, mental or physical that once it has been changed in any way will have a rippling affect that affects all of the rest of your body, mind and life.

I have been dealing with my whole world changing for 19 years and it just hit me the other week just how fully my world has been totally changed and become so unfamiliar that I have no earthly idea where to start to pick up the pieces.

I related this to my mother and said it is like Katrina ran through my whole world and I am standing in the middle of New Orleans (my life) and looking around at all the devastation, no funding, not knowing if I can even rebuild or how or where to begin.

It truly is beyond me my friends to know where or how to find even the supplies and funding to start to rebuild.

I have read about people who have had their lives wiped out and made wonderful success stories out of their ruins to gain even greater lives. But I can’t find where the person was totally wiped out in every way and was also so ill and in such pain they couldn’t rebuild if they wanted to because they can’t even take care of their normal daily routines much less fight to make a new life. It takes alot of energy to rebuild a person and a life i. You add the inability to function to do what it takes well you got a problem.

If I were well and just had pain I think I could put together a really nice life. If I were well and had no pain either there would not even be a question. I could put any kind of life I wanted together. I am the come back kid and have no fears at having nothing to start with. It is the physical that has taken me by surprise and stopped me from figuring out how to make my new life.

Don’t get me wrong I am farrrrr from ever giving up. I will find my way it is just a whole new experience that well maybe I will make my come back from writing the first how to book for those who walk the same road as I do.

Just a small glimpse of what I am starting with, this isn’t what I have lost but the mess I have gained from being ill and losing everything in my other life.

There are no how to books in reality on how to first get in touch with all the little pieces and big pieces of myself, my illnesses, my pain, my deafness, figure out how to even make a day out of what I have to life with. Then the mess to clean up. People I have 5 years of paper work stacked all over that needs to be gone through, mail to be answered, filing for the past 5 years. I have mail that is up to 6 months old stacked in piles that needs to be opened and responded to. I have medical bills that will take a life time to pay that need to be matched with what Medicare has or has not paid, that in itself will take months to go through and match up. Then I need to set up payments of maybe $5.00 a piece for all the bills. Bill collectors call and talk to me like dirt, screaming at me literally like I am sitting here holding out on them. They call sometimes 20 times a day. My parents try to talk to them and tell them I am deaf and explain my situation but they just get more threatening like this is how anyone would choose to live. I have to unplug the phone since I have an alarm for the deaf on it to flash since I can not hear it ring because the flashing drives me crazy after about the 10^th phone call. They won’t leave messages so I can write them to try and explain. They just leave threats. They start at 7am or earlier and ring until 10pm, many times, ring, hang up and ring again over and over. Sometimes I try to talk to them and pick up and they won’t say anything or I can’t hear anything. They just hang up. Then they call back again.
I have brought my credit up so much and try my best but when I get so ill I can not even bathe I get behind and then things build up so much as they are now that everything is totally out of control.

It gets to me and I do love these people Deepak Chopra, Wayne Dyer all these self help Guru’s but I am sorry you haven’t a clue what my world is like. Come to my house and you get my world in order, show me how to manifest out of all that I will show you and then you have a real formula that works to sell. Teach me how to live in unrelenting pain 24/7, make my muscles work so I can walk around and get things done. Show me how to override all of my physical, then the financial and then clean up the mess to be able to rebuild when I can not sit still for more than 30 minutes.

I challenge one of these self help writers and speakers to take on my life and use it to prove their theories and let my success be their proof that what they teach really works.

Wouldn’t you all really like to see one of these self help philosophies really be put to the test in a real life situation and have the author take you step by step through their program with a real person and see if it really works?? I really would myself. I can read all day long and I have read most every well known author of “how to” “self help” “motivational speakers” all of them can write yes and that is good. They can talk very well and their CD’s are most inspiring but their claims. I have never seen one or watched a motivational program that took a real person like me or any of the thousands if not millions of people who they would have to take from ground zero and work them to the success that all of these guru’s claim are guaranteed if you just buy their material and use it correctly. Well if they are running the show we know the material would be used correctly and surely their methodology should work if they are practicing what they write, correct??? So I myself after buying and reading and practicing so many of these methods, would love to be taken through the whole process and see how it works from beginning to end. Now that would make a believer out of me and surely that would guarantee their theories and they would have nothing to lose plus they would be helping so many people in the process. People could follow along step by step with them and help themselves get better and find the answers through these guaranteed methods.

I am here in Arizona and Andrew Weil has his place here too, let him take on my life situation, mind, body and soul or someone with as much to deal with. Have him use all of his knowledge in all the books he has written and has built his enormous health center, that I can not afford to even drive by and let’s see it all work in action by taking on my life, health and losses. If he can make his theories work with everything I am having to overcome then I will be a believer and he will be really helping thousands or maybe even millions, because I think people would watch from all over the world. We are all looking for hope and for answers from suffering, loss or dying.

OK, I leave this alone now, I have said my piece like I can on my Blog now the rest is up to all of you and the more you bring to this site to read this blog entry.

Ok, sorry back to pain and how being in crippling pain can stop your life, changes you and what can you do about living with this kind of debilitation and still have quality of life.

I mean why do you think torture works so well at breaking a person because it works. Your mind and body can only take so much for so long and we all have different thresholds of what our breaking point is. Then where do you go when you hit that breaking point yet the pain continues.

When someone can figure out how to conquer these questions with answers that work then you have a book to write. Sure I have even written a book on how to live and solve any problem that comes your way and my methods work. But they have yet to stop the affects of chronic pain that is incapacitating. I am stuck there and can not finish my book until I have found the answers to how to get debilitating and relentless pain under control and stop the affects that take away any quality of life for the people who live in this nightmare. There are millions of people whose lives have been taken away by severe chronic pain who do everything they can and try every way they know how to get relief. To me now that I am one of them this is one of the most devastating, under studied and under addressed issue in any society in this world. But unless you are one of these people it is not even an issue to think about. There are too many upfront daily issues that touch everyone’s life that come first and rightly so. The more something affects the largest of masses the more attention it should receive.
That does not mean though that there is not a huge hole in our medical system that needs to not just address but make it a priority with it’s own section of medicine. Chronic medicine should be a medical field just like Neurology or any other system of medicine, studied, researched and people if not solved controlled.

Think if there are millions of people like me if their pain was controlled to the point where they could at least function and cope how many millions could re-join the working force, save in medical costs, mental health and be functional parts of society again.

But I digress here. I want to get back to just how much “chronic” robs anyone and everyone from even the most minuet parts of life and living.

There has always been a stigma to the word “chronic” and I even attached a negative feeling to anything that had “chronic” attached to it.

“Oh chronic, that means choosing to stay that way.” God how I wish because friends if that were the real definition to “chronic” I would be well and out there like the road runner making up for all that I have lost.

Then you have to add “invisible” to this nightmare because most “chronic” states of illness and pain are invisible. We are a very visual society and if you don’t look sick you must not be sick. I learned early on that if I went to the ER or to the doctor’s I had better look the part and play the part or I would not get any attention even though the attention I received was minimal because what is wrong with me is on the inside not a third eye that is in the middle of my forehead.
I have always believed in “psychological warfare” as I call it. If you work hard to look well, act well you will feel better. I still believe this to be true. But don’t dare go seek help with this attitude or you are labeled fast as either what we call a “malingerer” or “drug seeker” because sick people must look sick. Now believe me when I take off the makeup I look sick because inside or out if you are sick you do look sick. But you must be a good clinician to look for what tells about a person if they are really sick. I myself know the signs so they can’t be that hidden or hard to learn. It is just our medical system is so overloaded because of our inept way of having our whole system set up doctors nor nurses are taught nor do they care to take the time to assess their patient first. A first class assessment can tell you almost everything about a patient if you learn it and it saves a lot of time and money if we would teach these assessment skills. But now that medicine has turned into a “business” we profile now instead of assess. Profiling is very dangerous and has cost us many lives and much money but it is becoming more and more prevalent than going the true art of medicine way of assessing. Business does not understand medicine and since business is now running the show in Washington and in our health care facilities and most assuredly by our insurance companies you will find more and more profiling determining your care than anything else in medicine. The future looks bleak believe me as far as our health care system now that we have let big business take it over and run it. Doctors won’t complain because now they can actually buy into the business which use to be known as a “conflict” of interest but now is just “good business.” All in all we the consumers and that is what you are now, not patients or clients but consumers, we will be the one’s who lose out with our health, lives and checkbooks.

We are at the bottom line in medicine and that is the almighty dollar. You can have insurance out the ying yang but try to make them pay and then tell me I was wrong. Health insurance, life insurance, long term care, you name it. The name of the game is to get you to buy early, pay long term and then when you need it, that one little “clause” in your policy will keep you from collecting what you counted on to help you, which is what you took the insurance out for in the first place. The baby boomers will be the first generation to feel the full brunt of this as insurance could not make billions nor could the medical industry if they paid out what the baby boomers health needs will demand so be prepared folks. I am going to have a whole lot more company than I do now.

My nightmare has already begun and so has a lot of other baby boomers who have learned as I have but the majority haven’t a clue what is coming. If you don’t think you can be me think again. I still can not believe this is my life and I truly believe I will find a way out one way or another because I have been taught by the best the beginning of this Mega Corporate structure that is and will be the most powerful money maker corporate system in this country, “The Health Care System.”

They have the most powerful lobbyists in Washington and this power if you read the fine print on your Internet News source or your Newspaper and follow the little articles along you will see it. I have followed these little news snips for years and see the big picture plus being in the system I see the changes and have watched the giant grow and be taken over by Corporate America. It is like a cancer, slow, quiet, without drawing attention to itself. The facade staying the same so as to not look any different from the old structure you knew and trusted to come through for you, you the complacent consumer. This way you will not challenge or question it. Read all those papers you sign every time you go to the doctor, try to challenge it and most of all try to collect and you will see the wrath that is masked by cute, funny and sensitive commercial fronts with catchy sayings. The millions that go into those advertisements are the millions you paid in and will never see when you need them.

Read the website I have under FYI on this Blog and do a little research and find out just how little control you have over your medical information, your medical costs, care or outcome of your care and who cares?

You will find that many doctors have gone into business with corporations who have combined doctors together with 3 to 4 different offices and with interests in outpatient surgery centers, labs, scan centers. In the state of Arizona the law now states as long as you are informed that your doctor’s corporation has interest in any treatment centers as long as they inform you of this when they refer you to their centers it is not a conflict of interest. I assume these new corporate investments are state by state. I have not checked into whether there are any Federal Laws to protect the consumer or to protect the corporations.

All of this falls under the “slang” now of 10 minute medicine. Which if you check as to how your doctor’s office schedules appointments you will see they are set 10 minutes apart.

If you think you can assess, come to a diagnosis, treat and prevent in 10 minutes between 3 to 4 different offices well I all that pure psychic.

I got so frustrated because the hardest thing other than living with my chronic conditions, pain and deafness, is trying to get what I needed out of the health care system and also do all the work they expected out of me before my visit, I bought this book called “How to be a Smart Patient.” This book was written by doctors who need to get out from behind their computers and get out into the field because I did what they told me and am getting no where. I wrote what they said would help me greatly and my doctor to get to the problem without needless information and save me from having to write the same information over and over that took 30 minutes each time I went to the doctor. Being a nurse I felt I did a very complete and condensed summary which I take to all my appointments and not one doctor has read it. The girls that run the offices tell me I have to fill out the paper work anyway and the doctors don’t even look at that paper work because they end up asking me the same questions that are answered on their forms. I have doctors who now charge for phone calls if you need them for a crisis like at night or weekends. I mean I knew attorneys charged for phone calls but now doctors charging for calls for medications or something they did and it went wrong, I pay for a phone call and an office visit for something that wasn’t even my original problem but caused by the treatment by the doctor.
So if you don’t think Health Care has gone corporate you are not reading or you haven’t gotten ill yet. I say “yet” because most of us do get ill as we age over something so all this will affect you someday and the more informed consumer you are the better you will be financially, physically and maybe even live longer.

I am wondering now with doctors having investments in all the surgery centers and testing centers how many things that use to go under benign or even the reading of the results differently could be skewed now and in the future for “profit.” I mean we can certainly justify anything in medicine since it is not an exact science.

Do start paying more attention to how your local medical system is set up and operates. How your doctor’s office set up, their procedures, how you are treated and most of all who and how is the pricing set up.

Have you ever wondered that? Who determines how much an office visit costs for your 10 minutes, how is it determined and how much are we going to let the rising cost go before we start to expect something in return. Medicine is the only service where they do not have to account for anything other than their time and you still have to pay whether you get better or not.

Well since I went off on a very important part of my journey dealing with the medical system and how I have watched it change over the years and not for the better I will finish my journey through experiencing what it is like to live as a chronically in pain person.

Good night fellow travelers,

Mary-Anne

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Good Evening My Friends: 

Well, I thought about whether I should stay true to my journal and write about what is going on step by step and decided that if I am to share with you all that goes on throughout my journey to the end I must stay true to myself and to you.

Today I was focused on thinking about death and dying. My father who if you knew him you would be amazed. He is 81 and until a few months ago still road his bike up to 5 miles a day. On the treadmill his heart rate only gets up to 101 that is how great of shape he is in. My father has always taken care of himself. He has a strict German mindset that has been passed down for generations in our family. I am the first to break it and boy did I break it  (smile).

We do not believe in getting ill and if you do get ill, you do all you can to support your own body, mind and will to heal itself. Our whole family has died throughout the ages of old age and never does anyone go to the doctor or the hospital unless of course you broke something but for anything else, we heal with faith and doing all the natural things to support the body to heal itself. It has worked. My father has always eaten right, exercised. I have never seen my father ill. But now things may have changed. He had to have a colonoscopy because of blood showing up. They found two tumors and a polyp. The polyp was removed and they have taken a biopsy of the tumors. They are “suspect” for cancer. This has devastated me today.

I know and we all know that the end for all of us is dying which has always amazed me and I have studied and thought about this phenomena for a life time because it just seems to have so many contradictions to me.

We live our lives as if there is a tomorrow. We focus on petty little dramas, hurt each other, are very self focused and build a world around every thing that denies that there is an end much less it being death.

Then we have taken death and made it socially such a negative and heart wrenching experience.

I often wonder why societies took death and dying and made it so negative, scary and such a doom and gloom experience.

I wonder what we would be like, what going through threatening illnesses and dying would be like if we had made it a positive experience that we celebrated like other transitions, birth, graduations, weddings.  I saw a movie once where a father was dying of cancer and he handled it very matter a fact. He told everyone, he talked about his experience. He went to each of those he loved and cared about and talked out any unfinished business. He got all his affairs in order. He handled it with such dignity and like it was just a transition from one situation to another. Then instead of everyone waiting until he died and then having a wake I guess it is and a solemn funeral where everyone wore black, cried and reinforced this doom and gloom experience of dying, his family put together a huge party. They invited everyone in the family, all his friends, co-workers everyone who would have been at the funeral and they had a huge gala. Of course he was the guest of honor. But they all were up, happy, laughing, talking about the times they shared personally with this man. He went around and talked to everyone. It was terribly moving and such a great idea I thought. No one was sad, no tears except of heartfelt emotions. Instead of everyone getting together after he was gone when he wasn’t there to enjoy their company, what they had to say and feel about him and for them all to show each other the love they felt, he got to really enjoy seeing and feeling his whole life sharing it with those who had traveled this life with him. It was wonderful. He died two weeks later a very happy and at peace man. He missed nothing. They had no funeral, which cost way too much for just burying a body. They spent the money celebrating and giving this man the greatest gift anyone of us could have and it was happy. It made me think maybe death isn’t so bad and doesn’t have to be such a doom and gloom fearful experience that really ends up being such a trauma for those left behind. Then you don’t put all this money into something that is so sad, so traumatic and have everyone rally around to look at a corpse in a box that cost $10,000.00. How gruesome.

If we made it a ritual that was happy, loving, natural and shared the whole experience with the person we were saying goodbye to I wonder how different death and dying would be in this country.  I wonder how many things about life it would change for us and how we lived our lives. Why do you suppose we did and do make death and dying so gruesome and so dark and scary?  What do we get out of that instead of doing it where it is as natural and as big of a celebration as birth. I mean we may not remember being born but it is a traumatic experience and not a pleasant one for the baby. Maybe death is the same it just seems the way it does because we made it that way by our inventing rituals that reinforce it as a devastating loss that people actually have to go into counseling for, some for years. I know when I worked at the Hospice we had support groups for those who could not get over the death of a loved one. You can not tell me how we are taught our whole lives, what we are shown, how it is talked about and how we keep death and dying in the shadows of life, that this does not affect all of us and not in a healthy or healing way.

We all have our theories, our beliefs and our religions but no one knows for sure what is after death if anything. It is all based on belief. No one has literally come back like Houdini and gotten on TV and said ok folks this is what it is all about. I mean if anyone was going to come back it would have been Houdini because he was as obsessed about death as anyone and he promised if there was a way he would come back.

Every year on Halloween, the great magicians of this country get together and try to contact Houdini, but to this day it has not happened.

So no one really knows what is after life ends here. That is part of the mystery, part of the fear of the unknown and part of why we keep it still in the back rooms and treat it as the worst tragedy that one can have told to them or have happen.

Dr. Kubler-Ross and Dr. Bernie Siegel tried to bring death and dying out into the open and studied it as a science and with spirituality. I studied both of their works and still do.  But as a society we still didn’t feel comfortable with looking at and having death and dying in the forefront. I now as a nurse it is still an uncomfortable subject and not treated as it should be in the hospitals or ER’s.

It is not a subject that is well taught in medical school.
Here it is the one guarantee in life. The most absolute guarantee and after thousands of years we are still keep this subject taboo and very uncomfortable. In fact you may not even like me writing about it. I don’t know that I am so comfortable writing about it. But because of my situation and now my father’s it has come to my mind and is something I must pursue to find peace with it.
When my dad told me of his news I immediately went into a dark place and broke down into tears. My mind has been going in many directions and I know me. I have to process it and go where I need to go to find peace so that I can come to terms with what I don’t want to happen, to lose my father. Yet, all my life I have known like you about death and that it would come at some point to all of us.

We are funny creatures when it comes to so many important and real issues. We go into denial or just build a world around what we want to be true, skimming over the most unimaginable or those issues we do not want to face because we can find no peace in the “unknown” especially when it is going to happen to us.

It is better to focus on sports.  You know sports is so much more important to us than death. Why is that anything to point out because death is real, is guaranteed and because it can happen at any time, which should make life that much more precious but it doesn’t. We kill for the most insane reasons. We have more information, more rules, more coverage, more respect for sports than we do for death and dying.

Yes, we are a funny in our socialized thinking and how we choose to handle what we find most uncomfortable or just don’t want to have happen.

I haven’t got it worked out anymore than anyone else because no matter what like I said it all comes down to a belief no proof which makes coming to complete peace with death something I am not sure anyone can do. You may say you have but when the time comes or when that of a loved one comes I wonder how many people end up reacting the way they “thought” they would. Acceptance, yes I know people who have come to acceptance but that is different than complete peace.  Sort of like there is nothing you can do about it so you might as well accept it. Now I kind of envy these people as they are able to give in to the mysteries of life without missing out on living or going to pieces with dying. They have something that just makes it all OK just because they accept that this is the way it is so go with it. Maybe I can get to that place someday or maybe my make up is such that I have to have more.
But I do envy their simplicity, their willingness to just let go and give in.
What a wonderful frame of reference to have about life and death.

I think I will work on that one as I have never been one to be simple.

Yes, just writing it feels good and makes me want to pursue that feeling of total surrender which is what I think it really is.

I am just not sure my mind will give me that kind of break J, it has to “know” and everything has to make sense to my mind.

I do know I am not alone or death and dying would not be in the background, treated so dark, so traumatizing and all our rituals would not be so negative and reinforcing that death and dying is fearful and negative experience.

Something is still not right with us or we would be having that celebration party like that man did. I am not sure I know of one business that does that sort of catering yet. Do any of you know of one? I sure would like to know if there is one out there. Is there a business that makes death and dying a celebration, a transition that we share with the person before they go? If you do know of one please write me and give me their address and phone number. I will get back with you on this if I get any emails about this.

But until there is and we start changing our mindset and how we treat death and dying it is a tragedy that lasts a life time.

I also wonder why it is the one mystery of life, the only one guaranteed mind you, that we are given no concrete, beyond a doubt, not even a hint as to why or what happens and I don’t mean a belief. Don’t give me a religious belief as being guaranteed because I can answer that one right here and now it is a belief, until you have been there it is a belief.

For now my heart is aching for me about my father. We will hear next Thursday as to whether the biopsies are negative or not. I will let you know.

If you have any comments, any enlightenment on this subject I would love to hear from you. With all that is happening with me and now my family may be facing another crisis, your stories, your words of experience would be most helpful.

For now Good Night and God Bless,

Talk to you tomorrow,

Your traveling companion Mary-Anne

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Good Evening My Friends, it has been a while as I have been very ill, another setback.

I try to wake up each day with a theme so that I have something positive to focus on no matter what the day may bring. I practice what is called “being in the present moment.”  It really works and I want to share it with you.

Everyday is so very difficult on me with the pain. I am not complaining about where I am on my journey. I just need to paint a picture with words every day so you can be in the moment with me. Otherwise you read more as a detached spectator.  I want you to be a participator. That is the only way you can get as close to being in there with me as we can get. So bear with me each day as I paint my day with words so that you can come inside and really visit me, feel, touch and hopefully take away some sense of “going through” a part of what I am feeling and going through. It truly is a good way to pass verbal communication and get as close to the experience as you can without being the experience.

I wake up and as I have said take my medications so that I can actually get up. What a horrid feeling to wake up every day with pain, sweating, burning up, your heart irregular and beating very fast, which of course affects your breathing. Then trying to get up when your equilibrium and coordination are not within your control. I really can not do justice in my description of what waking up is like other than not waking up would be better. Never in all my life could I in my wildest imagination think anyone could wake up with so much happening that is outside of your control and could be very paralyzing if you didn’t learn how to have faith and determination through years of teaching ones self how to hold on just for the sake of holding on.  As I write this I truly can not believe I wake up with all the symptoms I do and to actually know that my day, my life is controlled by taking medications to give me the ability to live through another day.  I am not sure I will ever get use to this as my reality but it is. So then I have my medications set out to take. I make myself get up and go to the kitchen to take them hoping that one day it won’t be such an effort and I will see some improvement. I get up and my feet cramp up twisting inward, my whole foot curls up, my toes cramp in and under each other making walking a task I never thought could be so hard. As my foot touches the floor I feel the pain of walking on cut glass step by step. I am dizzy, my equilibrium is uncontrollable where I walk like I am drunk. I have very little coordination to where I must hold on to something each agonizing step of the way to the kitchen. But I am determined to use my mind to make myself focus on each part of my body, each step telling it what to do. This is part of my therapy that I developed from learning about Sister Kenny who cured Polio when doctors could not using the same techniques as she did. They work it is slow going but I make it so far every day. But I tear up as I keep talking to my body because I remember just a year ago I could walk just fine and how drastic of a change has taken place in just one year. I fight to stay in the present moment when all my feelings want to go to fear that if all this can happen in just one year what lies ahead for me?

This is where I really admire the human spirit because my friends I tell you I truly do not know where I get the ability, the tenacity, whatever it is to keep going on day after day with only faith to hold on to as the years have taken such a toll on my body, my mind and my spirit. Yet something inside keeps on fighting, keeps on believing that I will be an even better Mary-Anne and that I do have a purpose that makes all of this worthwhile. For now though I just feel lucky that I have worked so hard on myself in developing myself into a well adjusted, happy, strong, determined and so full of faith in my belief system that quitting does not even register no matter what comes to my mind when I get to the point I was all this week.

That is why there are no entries for this week. I just was so sick, unable to even dress or go out. I couldn’t cook so I didn’t eat. All I could do was lay and sleep to escape the pain, the sickness and the loss of my will to fight any longer. I was also angry. I am so tired of all of this.

I can go so long and then I hit what I call my threshold to where no matter what I believe, practice or tell myself I am just tired.

There are so many things wrong that when I get so worn down, in so much pain and my fight leaves me I just can not see how getting all of this even under control much less any real answers will come.

I think back to the days when getting out of bed was just a thoughtless routine. I remember how I use to wake up. I always woke up with a smile on my face and would lay there and get thrills in my stomach thinking of my day. I was always so excited to wake up and to face the day. I never needed a reason to get up just being alive and making my day whatever I wanted to was enough for me. I would lay there and go through what I was going to make of my day. I couldn’t wait to get out of bed and make it all happen. Each day was like a dream come true. I don’t know where I got my attitude it was just born in me and I thanked God for it. Lot’s of people wake up irritable and it takes them a while to get oriented and get motivated to face their day but not me. Each day was a delight and I couldn’t stand to go to sleep because I hated missing any part of life. But then I added to my thinking that if I went to sleep the sooner morning would come and my new adventure would start so I go to where going to bed was exciting because it meant morning was just around the corner.

I always could find a way to make everything look and feel good maybe that is why I have been able to make so much lemonade out of lemons and have lasted this long.

I have gone down physically this past week. I have a bad bladder infection, allergies. The change of seasons brings out the worst in my symptoms to where everything  potentates and every symptom screams out loud and clear. This is when it takes my most patience and I must hold on to my faith with all that I have. I still hate losing a day.

I ache to feel better so that I can feel some of the old feelings again. Medications numb you though and it makes it hard to feel this I truly feel robbed of, my feelings. I love my feelings they always carried me through the day and made me so happy each and every day. Down days is something I just never experienced until I got ill.

I have to redo my health plan as I see this one is not working so back to the drawing board with you. I am going to redesign it this weekend.

I have surgery on Monday so I will not be writing for a couple of days. They are doing a muscle biopsy to try and find out the “cause” of why my muscles have wasted away and do not work correctly anymore. This Neuromuscular doctor feels he can get the answers to my muscles and my nerves from this biopsy. Because I am unable to lay still with the electrical shocks they are having a general surgeon do the surgery under Versed because it is two hours and I must be totally still. I will enjoy the Versed, to not feel pain for a couple of hours feels like heaven to me so I am really looking forward to it. I know that sounds strange but if you felt the constant and relentless pain you would also enjoy the relief believe me.

I am beat as you can tell by my writing so I guess I will try to sleep and pray that I wake up better so I can have a beautiful day. I am going to use all of my attitude to make tomorrow or today rather a wonderful day.

So until tomorrow my fellow travelers I say goodnight and may you find peace in your sleep and make your tomorrow all that it can be.

Mary-Anne

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