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

Deafness

I have been sharing my experience and perception about chronic illness and chronic pain.
I have not touched on the sounds of silence. I want to share with you what it is like becoming and being deaf after years of hearing.

First, let me define my deafness.

Without hearing aids I hear nothing but abstract noises that must be of certain pitches. I can be standing next to a phone I can not hear it ring so this is one pitch I can not hear. I can not hear thunder. I can hear certain loud crashes but other than that all I hear are 4 octaves of Tinnitus, which are high pitch loud I mean loud sirens that scream constantly in my head 24/7. Then believe it or not I have a banjo always strumming the exact same cords over and over and over in my right ear. I thought I was crazy as far as the banjo but the Neuro-Otiologist says it is normal. He said it was no different than hitting your knee-cap and it having a constant funny feeling in it. He said it would go away but it hasn’t. All day every day I get to hear Deliverance in my head. So I consider this pretty deaf. Under the state disability I am considered deaf. On the official breakdown of hearing loss I am one step from complete deafness which is where you can not gain any benefits from hearing aids. You are “stone deaf.” I am one step up from stone deaf under the governments break down of definitions my hearing tests put me in what is called “profound hearing loss.”

As far as hearing aids, I must wear the most technically advanced, most powerful hearing aids. When they are of no benefit for me, there are no other hearing aids for me to move up to. I am done and move to the “stone deaf” definition.

Hearing aids of today “digital” have allowed me to hear some pitches of sound. If I look at you, I can read your lips. Now this is catchy, I can read some of your words that you form with your mouth ONLY IF I am familiar with the subject being talked to me about and only if I am being addressed by one person and most definitely ONLY with my hearing aids in.

One of the greatest losses and hurdles that I have yet to overcome or even figure out is how to get my brain to watch and read lips, then comprehend those words at the same time. Then process all of this into making sense called communication. You would not believe what we take for granted as hearing people that goes on rapidly in your head at every given moment. But I sure lost it when I went deaf. There are three distinct and important functions that we as hearing people do and are going on at a subconscious level all at the same time. I am now trying to do all of these functions on a conscious level step by step all at the same time and keep up with all the other parts of an interaction going on at the same time. What is happening around me, the other people who may or may not be involved yet throw in a comment, someone asking me something while I am in this other conversation well it is just a mess. If you really want to get the shock of it all, sometime wear ear plugs to the store. I had my family do this only they wore ear plugs for a 24 hour period just to get a glimpse of what I am trying to adjust to, get frightened of, overwhelmed by and the many many losses that make losing your hearing much more than losing the ability to hear sounds.

Again I digress, so here I am trying to watch your mouth which you do not annunciate your words very well, funny I had never noticed how badly we talk. We are very lazy in our speech my friends. I am intently watching your mouth movements to make out the “main” words, this takes my total concentration which is not good. I am not able to see your face, your animations, anything going on around us. The whole place could be on fire and I would not know it if you did not say it with your mouth movements that is how much concentration it takes for me to get what you are trying to convey to me.

Here I am using all my brain power to focus on your words, yet I am also supposed to be able to process your words into making something meaningful out of them, which is what you are trying to convey to me. The third process that is going on at this exact same time is taking what you are saying and interpreting it into what we call “communicating.” This is when everything that is being said is formulated into making words take on a logical meaning in your mind by comprehending, understanding, associating and thinking about what you are saying triggering what kind of response this elicits in me so that I can then answer you. All this goes on naturally when we can hear. Our brain does all of this automatically. Well now mine does not.

I never knew so much went on in our minds, with all of our senses and many other variables that come into play in a simple dialog forget the debating team for me J.

I first had to figure all this out and that it was taking place, how it takes place, as yet I haven’t figured out how to train my brain to all these functions consciously. I do know now why people equate “deafness with being dumb.” Believe me I have heard this more than once.

This is very frustrating and just ruins TV or the movies. I never get to see the movie, what anyone looks like, what they are doing, nothing. I am so busy reading the words and trying to figure out all that I have just explained I haven’t got time or enough eyes to read the script and watch the movie at the same time. By the time I finish reading the closed caption everything has moved on. That is also a problem. I did not take Evelyn Wood’s speed reading and in movies or TV you can’t say would you please slow down so I can keep up. I haven’t seen a movie since I went deaf a year and a half ago, nor have I enjoyed a TV program. I never get to see it.

In every day life this has really taken on a major change in my life. I do not like to converse outside my inner circle. It is quite embarrassing at this point in my journey with deafness. I can see how I look and act.

As I have described I am so busy trying to formulate your words with my mind that I have barely have a clue as to the content trying to be conveyed. So I believe I have that “doe staring into the headlight look on my face” and it just makes me feel stupid. I am a highly intelligent woman yet when I now try to verbally communicate, I truly feel I come across like I am retarded. Again being in my profession I can pick up on people’s body language with me, how they start to change how they talk to me and then treat me.
To me the world has gotten a lot colder, complacent and comfortably numb in how we treat and react to each other. I am old enough to remember a different time in this country.

Deafness has given me new sight and a whole new ability to hear what I never paid attention to before I was deaf. I learn something new every day being deaf all taught by my interactions with people either through direct or indirect interaction.

Since I never noticed to be aware of these new awakenings I don’t know if I would not be the same way if I still had the ability to hear. I hope I would not be but unless I get my hearing back I will never know the answer to that.

I do know people assume way too much about me at least and my deafness. They believe if they talk louder I will hear them. They also believe if they talk slow I will hear them.

This is not true for me. It is all about annunciation and using your whole mouth to speak your words clearly. My Otiologist talks at a normal rate of speed but he looks at me. He uses his lips and whole mouth to speak each word distinctly, which really is how we should speak to anyone. I have really noticed how lax we are in how we talk. People mumble, slur their words, put their hands over their mouths, speak going up and down with the volume of their voice. They talk so fast that they do not pronounce many of their words. It is like they kind of say part of the word but move on before they finish it. Oh yeah the worst is people barely move their mouths or lips in forming their words.

Next time you are talking to someone be aware of how you speak I think you will surprise yourself. On the superficial side, believe me it is kind of sexy to watch someone’s mouth and lips move if they use them to their full extent. There was a sex symbol maybe Marilyn Monroe who used this to her advantage. From one who is becoming an expert on your mouth, lips and teeth know how important they are to make them as inviting as possible and to talk as clearly and distinctly as possible. I am starting to do it for the looks of it because I like it J.

I have definitely noticed that once I start to converse with someone in any situation but the worst as I said before is any interaction with the health care system, that there is a definite lack of respect for me. I am still trying to figure out if this is because I am still in the victim role as a deaf person or if it is what I call “profiling” that people do unconsciously when they are dealing with disabled/deaf people. I am treated like I am a child, talk down to as if I were a child and ignored as if I am invisible. I know this is about my deafness because I was never treated this way when I was well and could hear. If you knew me you would know I could not be ignored nor would anyone attempt to talk down to me much less treat me like less than I deserve to be treated.

I have much work to still do on this, analyzing, changing Mary-Anne and how she presents herself and learning how to get what I want and need as an equal.

These are just some of the insights into being deaf. I don’t want to write a book which I could on all that has touched me, taught me, changed me and handicapped me by just going deaf. Then you add being disabled and invisibly disabled on top of that I have a novel.

It is a very rough road that each day brings new challenges and at this point pushes me back more and more into the shadows of life.
As I stated on the front page of my Blog I in no way resemble the Mary-Anne I knew before I got ill and went deaf.
It saddens me and I still have not found peace with all that has happened, all the losses but most of all the wearing down and loss of the beauty that once was Mary-Anne.

I hope I get to live to finish re-creating Mary-Anne and helping her find that fiery, energetic, life force driven woman full of life, afraid of nothing. A woman full of determination, unshakable belief that nothing could stop her and most of all a woman who believed that time was all that stood in the way of her and whatever she put her energy into getting.

I have shared only some of what deafness has shown me, guided me to and hopefully will help you become aware of just how losing one sense, hearing can take away much more than your ability to hear. I am going to spend some time on my Blog going over what I hope you will find very enlightening about what you can develop within yourself about yourself, without having to experience the great loss of becoming deaf. Maybe after reading this you will become a little more tolerant and less reactive when someone does not do, say or act according to your definition to normalacy. I hope you never have to take time out of your life to learn how to live in a hearing world that expects you to hear and penalizes you with constant consequences from society to individuals who take your not acting “normal” quite personally. Maybe a little tolerance could go a long way in our pressured society. Try it on for just one day and then tell me what you experienced and how you felt about yourself that day, a day of tolerance.

I wonder what would be different all over this messed up, killing, hating, wars, political “rights” and all roads lead to money for the few and heartache for the masses if we all practiced “Tolerance.”

Good night and Good morning my fellow travelers,

Mary-Anne

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Good Day Fellow Travelers.

I am sorry I did not do my entry for two days. I had some very overwhelming news on Monday about my physical condition. See I have been searching for these 19 years, one for a competent medical specialist. Not just one who could help me but just one who would take the time, really knew their stuff and who backed those two things up with doing them. I truly can tell you I didn’t find one until now which is really a sad testimony to our medical system, but it is true.

Now I finally have one and he is an amazing doctor. It is like starting from the beginning in some ways, yet I bring with me a long history that can not be denied. This includes bringing with me years of terrible trauma, abuse and from conflicting realities inflicted by our health care system, family, friends, strangers and myself.

I will tell you what I have found out that took me back to where I couldn’t write for a couple of days. After this entry I want to address a much larger picture I want to get into about two different realities that always emerge from whatever happens to me personally. I do like that about my journey. Really it happens in everyone’s life as they come up against obstacles or challenges but I am not sure how cognizant people are of these constant parallels that are in play whether we choose them or not. I will come back to these two realities tomorrow.

First, I went to the specialist I finally found after 19 years. I have no doubt now that I have found a true medical specialist that he is going to finally, put all the pieces of my puzzle together.

The problem that blew me away was what he found on this visit. He tested my nerves with the EMG and all were abnormal meaning that my body has attacked my whole nervous system which of course we all know runs everything in the body, not good. Part of what makes this specialist a really great doctor is that he knew from there that he had to see if it also had attacked my muscles. So he asked, asked can you believe that? I have never had a doctor ask me if I would mind having another test while we are there since it would tell him so much. Of course after all these years of suffering and loss of life I said yes. This time he was taken back. He expected the muscles NOT to be involved but to my unfortunate plight my muscles in both legs and arms (which were all he tested) are also under attack. Who knows how many muscles or if all my muscles are now involved.

I thought I had been through all the emotions that a person could ever experience over these 19 years. I even held up great the rest of Monday, but then I came crashing down Tuesday and went numb.

Here the two largest and most extensive systems that run every part of life itself from the cellular level to the actual movement and functioning of every part of my body are now under attack from whatever is causing this.

So what it boils down to is my whole body is destroying itself on a grand scale. Now I don’t know if it will be slow organ by organ because the nervous system and the muscles run everything. That is what hit Tuesday night. I had this flood of reality set in from my brain processing exactly what we had found out that day. Think about it my fellow travelers. Your heart is a muscle and is conducted with nerves, the lungs, your gastrointestinal, your eyes, your brain. It may not be feasible to know how much of my body is already being destroyed, or at what rate these two life supporting systems will progress, or what route they will take. Can I go blind in a year? Will my heart stop in a month? Will my brain go mushy in 6 months? I don’t know and neither does medical science, unfortunately. Naturally, it is coming down to the conclusion that the true cause, what path and what speed this progressive malfunctioning of my messenger system to my whole body will take, will stay an unknown variable. Then to finish me off, because there is muscle involvement he said it tips the scale from being the “treatable” autoimmune cause to the “untreatable” cause or even a third unknown.

At least with the autoimmune I could have had the antibodies that could have slowed down this self destroying process. Now it will be only supportive measures and in my mind up to me to find a way to fight and live.

Watching his lips say this just took away my everything. I was a walking zombie Tuesday and Wednesday. I am a little better today but still everything seems so surreal. I can not take it all in yet. It is too much.

I have more tests to go through but all of the rest of the tests are to try and find the root cause. But no matter the root cause the results stay the same. He has already alluded to that by saying there was nothing “I” could do to make a difference. Like, I asked him if the exercising I am doing to try and fight for my muscles to come back and to gain control over my muscles would make a difference. He clearly said “no” but continue them they can’t hurt. I figure it is a psychological thing he is trying to give me a sense of control over something.

I want the truth and I have no doubt I will come to terms and peace with all of this but I want to share the interim with you. I think it is important to share the process at least that I go through to get from victim back to victor.

First, I have to take it to the worst possible light, which is this. It is like I have MS, Parkinson’s and ALS all wrapped up in one body all working on me at the same time. This description would take anyone down to doom and gloom. Like I said it is all too much to let in. My mind is letting me know that by going numb. But my subconscious is working in overdrive trying to use all my skills, faith and knowledge to bring me back to sanity and the making of a new reality base. Once I get my new reality base then I have a foundation to take me from victim back to a victor.

In the mean time I am just letting go. I do trust my inner self and the inborn process of life. I know all the natural processes that I have discovered that we all possess do work and will work. As all that is working behind the scenes subconsciously, I am consciously working on what this new reality means to me and my life. I do know that I am going to change my plans, my attitude, my whole perspective about me. My life is changing without my intervening so it must need to happen. I also know that again, I will have to re-invent Mary-Anne because everything has changed. I have much to face, yet I also have to be aware that something could happen without warning to where I don’t want to put too much time into changing and miss out on living.

I have much to think and feel so that I can clear up and decipher what is true and what is my emotional take on my new reality. It will be more difficult this time because so many variables are involved and so much will be left without answers. Unfortunately, I am an answer person making this a whole new way of thinking and processing so that I can come to the place where no matter what I don’t know, I am going to focus on what am I going to do with what I do know. Most of all I must teach myself how to learn to live with so many unknowns.

I think one of the amazing parts of this journey is being the person with the problem or challenge then being able to be who I turn to for the answers. I knew without knowing that all the answers to my life, as with your life, are instilled from birth inside of me and I could and do tap into that source at any time. That is what got me into doing what I do now and what brought about the writing of my book. I have been told too many times that I can take anything, look at it and bring to light the resolutions and step by step process to bring about the results for any thing that anyone brings to me. It is quite a gift I was given and I thank God for it. I am not sure I have ever been told I was wrong and I have helped well over a thousand people world wide. It is like being Psychologically Psychic J.

I remember back to eight years old being able to listen to this voice inside of me that was an adult, very wise and very loving. She knew how to talk to me and resolve anything that I asked or was going through. I was so young I didn’t know any better so I made her out to be my guardian angel and named her Angie. I turned to her for everything throughout my life. Funny I never thought I would tell you about this, but it is true and she has never been wrong yet. Now I haven’t always listened as I am human and stubborn so I have made plenty of mistakes but only because I chose not to listen to my inner voice and do what my “ego” wanted to do.

I learned how to discover and develop this voice in anyone and created a therapy around what I discovered. I was then able to teach anyone how to tap into their inner voice and the skills to make their life happen for them.

I have found that teens and young adults are the easiest to teach. I have been teaching these skills and empowerment for the past 7 years on line free to teens and young adults. They flock to it and I have had amazing results.

So I wrote it all down into a manuscript but am stuck because I am not well enough to edit it. It sits behind me here in my study. It needs so desperately to be published. It could change the lives of teens and young adults around the world as it has been doing through my web site these past 7 years. But I need to make a living as I get nothing but disability which covers hardly anything and the more my body breaks down the more medications it is going to take to keep me alive. I was so hoping to publish my book and use the money from it to support myself and keep my business going for my kids (the teens and young adults) free. It is also what I live for. It would be my reason to fight for my life. There is no greater reward to me than to help these kids and to be apart of their transformation from troubled youths or delinquents to healthy, happy, achievers with goals that are now positive productive young people of the next generation.

What could be a greater profession or legacy my friends?

Pray that I make this happen. It has been my dream for as long as I can remember. It is all I think about other than growing and evolving into the most loving and beautiful spirit called Mary-Anne.

Well, I am getting too intimate maybe so I shall stop here.

I have much to work through. I am also grieving deeper than I ever have. I hurt so bad inside and honestly I don’t want to be going through this. How I wish I had, had a different fate. I am holding on to what I wrote on my front page my friends, that no matter what is now, I must believe the best is yet to come.

Tomorrow I am going to write an entry about one of my “soap boxes” because it keeps smacking me right between the eyes almost daily and that has always meant that it is something that I must work out and find an answer to. So I will talk to you tomorrow about this.

Good night and thank you for coming, you are my strength right now. I am holding on to you until I can stand again.

Your fellow traveler,

Mary-Anne

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I was going to continue on with my saga of this weekend. Again another lesson learned on my journey there is a bigger world than me and a bigger picture than my life. I never forget that. It is easy for someone who is without their basic life needs fulfilled to become self consumed. I have found that very prevalent in geriatrics, the chronically ill and those in chronic pain because it is so easy to become victims consumed by their situation. It is a “normal” and “natural” phase to go through but when you get stuck in it you become very self focused, anger and self centeredness set in. Let me make it clear that there is a major difference in selfishness and self-centeredness. Selfishness is a positive thing. It means we fulfill our needs first which is only right. If you are not fulfilled in all areas of your life how can you truly be there 100% for someone else? In Psychology, we see selfishness as a positive place to work from. Now self-centeredness is not a positive place to work from. It is where you are totally self-focused unable to see outside yourself, unable to focus on anything but getting what you want any way you feel like getting it, no matter who you may hurt or step on. This is a hurtful place to live but many people stay there because they consider it their “right” for whatever they feel cheated out of or betrayed by. OK cleared that one up.

This is important because I have come across more self-centered disabled people so far than selfish. Again, it is like their badge of honor, I lost this so it is my right to be angry. I don’t have to be like those who have complete lives. Life owes me something for my loss. It is like a sense of entitlement or payment for their losses. Not true, Not true as far as I am concerned. We are given challenges for reasons and it is not a big deal to figure out the “why’s” of our challenges. It is more important how we rise to greet and change our challenges into victories.

This brings me to the real travesty that I want to talk about. The shameful tragedy that is still unfolding about 9/11, that aired on 60 minutes tonight.

First, it just validated all that I have stated so far about how when you become ill all of the systems that, are supposedly put into place, to help us are the ones that turn their backs on us when we need them. The piece on 60 minutes for those of you who did not see it was about the 40,000 “hero’s” that risked their lives, gave months of their lives to go down to ground zero to rescue and recover for all those who lost someone on 9/11 and who did our dirty work.

Now, without a doubt thousands of these people mostly young to middle aged, healthy, athletic men but also women are now in the exact same position I am in. It amazed me that their stories were my story as I am sharing it with you. There is absolutely no difference in what has turned out to be thousands of healthy people, who are now chronically ill and maybe dying, my friends and my situation. They too are living the known for sure unknown, which is a lot different from healthy people who say “none of us knows when we are going to die.” I actually felt kinship and knew everything that these bewildered, scared and very ill people were going through and feeling. I saw myself on the screen in the many faces that were interviewed for this piece. They even validated and backed up what I said about how the system, society, the government, the health care system, the political system have all let them down. Here we hurrahed them as hero’s and now that they are in grave need of assistance the part of America that is so disliked by other countries shows its ugly head. When it comes to the capitalism and we do the math all of a sudden our generosity and feeling of responsibility goes right out the window. When it comes to money my friends even taking care of our own we conveniently turn our backs and go into our comfortably numb state of denial.

These, 9/11 Hero’s went in for you and me so we wouldn’t have to. They did risk their lives and now they are living my story. They are all terribly ill. There have been 3 deaths accounted for by working at ground zero from breathing the air at ground zero. These people over the past 5 years since 9/11 have lost their jobs because they are too ill to work. These were healthy men in their 20’s and 30’s. They have families, most are firefighters. Their whole world as they knew it has been wiped out like mine was. They have no idea how long they will live and have to live with that uncertainty like I do. They can not get the government to help them even receive the immediate medical care they need. What also saddens me so is what we as a society are validating the propaganda believed by the Middle East, Russia, China, North Korea to be correct in their views that Capitalism rules in this country no matter how close to home it comes.

There are only saving grace about this horrible lasting aftermath of 9/11. One is that one of the ill stricken is the “Vice Mayor” of New York City. He is not laying down and taking the rejections from the government and insurance companies. He actually applied for Workman’s Comp and was turned down because it was past the “two year” law to apply. He fought it and got the length of time changed. So God bless him. I am so sorry he is so ill and has to now be in the same nightmare and on the same journey as I am but thank God someone with clout is. The second saving grace is one of the stricken by these lung ailments is a young doctor. He is the one who worked tirelessly to make the medical system and the government admit that these lung diseases are without a doubt directly tied to work done at ground zero. He is now working to get these thousands and the more that are being stricken down monthly, the medical care they no longer can afford because they can not work and have no health insurance.

This makes my work on this blog even more important and precious to me. I want you to understand. I want you to walk around inside of me because you will then be walking around inside of all these Hero’s we owe, yes money to, so they can get the much needed medical care, not lose all they have worked for, can support their families and be compensated for the loss of life they are facing. Each and every American owes them, our government owes them. This includes our politicians who are the living poster people for “The Comfortably Numb” of this nation. Our medical system who should give tirelessly to find out what is causing this epidemic, figure out if they can develop medications to slow down or stop the loss of lung capacity to stop the death toll from rising. The largest money maker in this country is our Health Care System. Did you know that? I didn’t until I read it so they have the money and they have the resources to already be working on this terrible terrible travesty brought on to thousands of people who are losing their lives, their sense of reality, their identities and facing betrayal of the very people they were helping.

I am so sorry I have all those young people as traveling companions. I actually would give everything I use to have without question if I could make them well. I ache for them and at this moment my life, my pain, my small world seems so insignificant compared to this on going part of 9/11 that I believe is just beginning.

What kind of legacy will be left behind for history to tell about all of us in relation to the aftermath of 9/11??? What we do with this will tell the truth about us as a nation. The whole world will be watching as this unfolds. We have already lost so much respect of the world we have a chance as a people to show that we are not our short term government officials and that we, the people can vote them out if they don’t straighten up. We the people of this country do care, do have a powerful voice against injustice and we take care of our own no matter the cost no matter the length of time. We will always remember September 11, 2001 and never become complacent again or under estimate our enemies. When it comes to our own we stand as one all differences set aside until we complete our mission.

I just hope the news doesn’t drop this national crisis and let what is described even by our own news developers as the definition of Americans.
“Americans have short memories” so you have to keep developing news to keep the ratings up.

At the very least, we can all have a powerful voice about this in November. Vote and make one of your deciding factors what have the Politician’s done, not promised to do, but done to give immediate help to the thousands of suffering Hero’s of 9/11.

No one should ever have to experience and live what I have for 19 years much less those 40,000 people who risked their lives, gave up their lives to do all the dirty work from 9/11. These hero’s who are now are losing their lives because of the failing of our systems that take our hard earned money, but now when they need to be shelling it out are turning their backs on them.

How are we going to write history my friends?

We have a chance to turn this country around and bring it back to the people, of the people and for the people.

God Bless all of the 40,000 hero’s. I know words are of little use but my heart aches for each and every one of you. What little I can do I give my word as one American to another, I will do. I won’t ever forget what we owe you. We can not give you your health back but we can give you quality of life, compensation for your losses and your dignity back.

Because this issue relates so closely to my own I feel it was appropriate to share this with you. It hits so close to my heart I feel passionate as you can read and just had to share my thoughts and feelings with you, as it is part of my journey.

Good night my fellow travelers, talk to you tomorrow,

Mary-Anne

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Good day fellow travelers:

Well it was a rough night. I just went with the pain. I did figure out what is causing this bladder “flair up” I have a bladder infection. Now in and of itself a bladder infection doesn’t usually hurt that much but when you have Interstitial Cystitis which is where the bladder lining has been eaten away by the body. This is my main problem. I have an immune system that is attacking my own body organ by organ. My immune system is getting the wrong message where it thinks that my organs are the “enemy” and over the years it has and will continue to attack each organ taking away the normal functioning of that organ or even stopping the organ from functioning at all. This is new information. Up till lately it was thought because the mindset of the medical system is to only look at one area or problem at a time instead of seeing the body as a whole, that I just had several different “problems” like Interstitial Cystitis, Neuropathy, gastrointestinal problems, cardiovascular problems and a few more. Finally after 19 years I have found two doctors one who is a Neurologist and Neuromuscular doctor and a Naturopath who are a gift from God after all this time. They are finally doctors who see the body as a whole and have both come to the same mindset about what my body is doing and now they are looking for the main culprit, which will turn out to be my immune system. They still have to try to figure out what went haywire which may be impossible because the causes are in the hundreds. I can trace glimpses of what has now developed into a full blown progressive attack of my body on my body to birth so I go with it is a “gene” that was not programmed right from the beginning. We will see what these two doctors come up with. Obviously if this is the case it can not be stopped but it can be slowed down.

That is the overview of what I am dealing with.

As far as what has set off my bladder to go into an inflammatory response I have no idea. This is just one organ that is malfunctioning and lost its ability to do what normally is done to protect us from this kind of over reaction that causes my immune system to over react, making what should be a simple bladder infection a crisis, where I can not even walk across the room because of the pain. My poor body is contracting trying to protect me from the pain but when you are pouring acid on an open wound it is an impossible situation that takes intervention way past what is known today by the art and science of medicine. Imagine if you will having a 3^rd degree burn on your arm, where acid is constantly being poured over this open nerve wound. Then comes along a multitude of lit matches boring into this open wound on your arm as the acid is constantly being poured over your exposed nerve endings. This is what it is like in my bladder right now. Plus my bladder has lost the ability to empty out the acid (urine) so it sits in there burning and eating deeper into the exposed nerve endings. This is called Pelvic Floor Dysfunction. I can not tell when I have urine in my bladder until it is so 3 times as full as yours, if you have a normal bladder. This is a constant irritant as you can imagine keeping my bladder lining from regenerating. It is a vicious cycle and so far no one knows how to stop it.

I was just thinking I can not imagine what would happen with someone who does not have the medical knowledge, experience and equipment that I have to help myself, in most cases, I can intervene and treat faster and more efficiently than the medical system. But what do you do when you don’t have all of this at your disposal or the knowledge and believe me it took me years of unbelievable stories to finally figure out that if anybody was going to take care of Mary-Anne it best be me otherwise this nightmare would have taken a much worse turn as far as my every day ability to have some quality and happiness in my life.

Think about the typical scenario that is not a life threatening emergency but you have chronic problems and one of them flares up to the point that you are suffering and need medical intervention on a Friday night. There would be no place to go but the ER. Now that is where I tried for years  to fit into the box and assembly line set up by our the health care system only causes me nightmares and so much money that I lost everything trying to get help and do as I was told. I would go to the ER and they would look at me like I was crazy for being so debilitated from a mere bladder infection. Then they would treat me as a mere bladder infection, giving me an antibiotic (broad spectrum) until the culture and sensitivity comes back which would be two days for the preliminary report and three for the final results because they do not run the tests over the weekend. If the ER doctor had any knowledge of I.C. they might give me a few pain pills. They would then tell me to go see my GP on Monday, send me on my way after a 4 ½ hour wait in the ER plus the couple of hours it would take the ER to wrap me up and finish with me. Now these numbers are proven. They just came out. Where I live Arizona the normal wait to be seen in the ER is twice the national average, which I think is way to long also. But for Arizona it is 4 ½ hours. Now I don’t know about you but if I am sick enough or in enough pain to have to seek out emergency care first I could not drive myself to the ER. Second, with my immune system, I could not sit in a full, loud waiting room with people coughing, sneezing and then putting their hands on everything waiting for 4 ½ hours before I am even taken into the ER. Well you spend the day there. Why we don’t have our health care system set up to triage and one side for every day stuff and the other side for true ER emergencies I just don’t understand. We also could save the ER’s for true emergencies and have walk in clinics for the every day problems that people can’t get into their GP for or do not have a GP to go to.

I digress back to the majority of people. I don’t know what people  would do. Through the years I have learned by experience to pretty much take care of myself at home. I have equipped myself with most of whatever I need to take care of what happens to me. I am lucky being a nurse to have a lot of the knowledge plus learning all I can about what has become part of my chronic state. I am able to handle about everything that flares up so that I don’t have to go through the trauma of trying to get medical intervention for chronic crises. If I did not have everything set up I would be in the ER constantly or spending hours trying to find help being passed from doctor to doctor. I remember those days and it is an impossible situation if you have any kind of chronic problem especially over the weekend.

Our health care system is so broken and the patient is the one who suffers the most from this yet we are expected to pay whether we get the help we need or not. Think about that. In no other area of corporate or service rendered businesses do you pay and have to just take what you get whether the problem is solved or not.  I will be posting about this issue when I get back on my feet. It is very important for everyone to really know how bad our health care system is and to take an active interest in making it a priority to “fit it” especially with the 78 million baby boomers coming along.

I first am able to test for my own bladder infections since I get them so often. I use to get 15 a year. With natural intervention, listening to my body I have cut that down to where I can go months without one. But then I will have several in a row. That is what is happening now. I had one last month and now have another.

I know the steps doctors would take so I implemented those. Then because of the I.C. I had to figure out how to get the pain under control to where I could at least lay down comfortably. I spent the early morning in a position I dread. I am curled up in the fetal position just crying unable to even think well enough to help myself.

Now I could just go with what was happening to me and I did for several years. This is where I feel I was in the “victim” stage. I started looking at myself and seeing that I was a victim. Victim to me is when you let the experience overtake you. It is in control and you become a part of the experience instead of recognizing the experience and detaching yourself from it taking control of the experience. This is a very very difficult mindset to teach ones self and actually discipline yourself to stay outside of whatever is happening to you.
We are natural born reactors. To react is exactly what the word says we “re-act” to the emotional with emotional. Never have I found this to be of positive benefit under any circumstances. I have had to teach myself to override my emotions. I must come outside myself be like a second person detach myself from what I am going through looking on as a professional using my mental and all my skills to figure out what is going on. Then I must stay detached throughout the experience though I am in great pain and of course having all the natural feelings of someone who is “in” the experience. This took great work, discipline and mental will power to teach myself not to be apart of the experience if I wanted to truly help myself.

Tomorrow I will finish explaining how to over ride anything in your life. How I taught myself to change my thinking from re-acting to acting and how this applies to every part of our lives not just for someone who is in pain.

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I was writing an entry to explain my physical situation so that everyone could have some grasp of what I am dealing with and have been dealing with on a progressive bases for 19 years. But out of no where the pain has taken over. I have developed many coping skills, techniques and “tricks” to override, deal with, ignore, push through whatever it takes to not let pain rule my life. Sometimes though the pain becomes so overwhelming I am just unable to push back at all. I can not even think straight. I was up and down all last night with pain. The pain is in my legs and feet from what is called Neuropathy. I then have excruciating pain in my bladder from what is called Interstitial Cystitis and then I have debilitating pain in my abdomen. Last night it started to escalate and today I have been fighting it but I have come to the point where the pain rules.
I have promised myself that no matter what I would get on here and write something every day no matter how bad or debilitated I am. So I am fulfilling my promise to myself.

I don’t know why but I feel like I need to apologize to you and to me that I couldn’t win today. But friends I just couldn’t and can’t. I have to give in tonight and stop, shut down my computer and go do all I can to endure the pain. The focus changes now from fighting, overriding or whatever I have developed to use to not let the pain stop me from functioning to now enduring. How to get through this. It is like someone torturing you and at some point you stop fighting it and your focus changes to survival at any cost. That is where the escalation has taken me today.

I don’t know what is doing this as it usually has a knee jerk cause and I will figure it out when I can think straight again. I will figure it out with you but for now I must give in and go with it. I will try all that I know to quell the pain and talk to Mary-Anne to comfort her so that she can make it through this, what I call “episode” of uncontrolled pain. Right now the pain is centered in my bladder so that is where I will focus and do all that I know that usually helps these kinds of break throughs.

I will write tomorrow and pray I have some peace tonight through sleep. Sometimes like tonight I beg for sleep just so I don’t have to feel. Tears stream down my cheeks without my permission as I have hit my pain threshold. Believe me I have a very high one after all this practice so I can tell you this kind of incapacitating pain is not with in the normal range of tolerance. I never stop no matter what unless it becomes blinding and my body and my mind shut down. That is where I am now.

Pray I get some relief for tonight if you happen to stop by and read this. I sure would appreciate your thoughts as I feel so very alone right now.

I must go try all that I can to stop whatever has gone haywire in my nervous system to allow this kind of breakthrough.

If I am able I will write during the night if I am again up. Usually though I am unable to sit still long enough to write or to focus my thoughts.

I hope I can write about pain soon as it is something that truly needs to be understood and addressed. I never knew pain could become this overwhelming that it takes your life away and you become the pain no matter how great of a guru you think you are. We all have a tolerance level unless I guess you are a complete nut and happen to enjoy pain at this level.

For all of you that share in this kind of pain God be with you and I am so sorry as there is no excuse for this kind of pain to exist today but it does and in record numbers, millions.

Until tomorrow, your victor,

Mary-Anne

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Welcome to my journey.

Come join me, get a cup of coffee, take a break and let’s get acquainted.

I sat here thinking where do I begin, how do a put into words all the facets of my life as it stands today. I will use the About Mary-Anne page to give a historical overview of what has brought me to this place in life and my motivation for putting up this blog. What I hope to gain from sharing the intimacy of my life publically and what I hope will be an enlightening experience where you will walk away with something that makes your life more aware or more meaningful from what I am going through.

I hope you keep coming back so that I can feel that I am no longer alone on my journey. I have found since I became ill and more so since I went deaf that connecting with others and having people care is so precious.
So I thank you for coming and taking the time out of your busy day to be with me for a moment, just stopping in to care.
This is my private journal that I have been writing for years. The focus is on using the therapeutic technique of journaling which has been proven to be a great tool in working through our life issues, finding our truth and expressing all the thoughts and feelings that live inside of us. Writing down and getting out into words what is going on inside of our heads is very cathartic. I have found this process helps me sort out what is real from what comes from any knee jerk reaction I may be experiencing to what is going on inside of me or my surroundings.

I am not going for a writing award nor did I excel in grammar as I have multiple learning disabilities, so please do not judge me too harshly if I make grammatical errors. I may have disabilities but stupid is not one of them.
Focus on content not context and try to get something positive out of my words , not making critiquing one of the goals. I want to be able to relax as I write and not be focused on my grammar. I got enough of that negative feedback through many years of schooling. We all do our best with what we have to work with. Some of us have less to draw upon than others but I have found any deficits is replaced by a gift in another area so I figure it is all OK .
I am starting from where I am today. Everything I am and do is built on the last 19 years of my life. When I became ill in 1987 out of no where slowly my whole being changed, my whole life obviously changed and where I am today I see my life began 19 years ago. Before that, everything that I was has either changed, died or no longer fits in the world I live today. I do not go back further than 1987 other than to find memories that I use to keep me believing that I have a purpose and that it isn’t over for me yet.

I have created my own coping skills, my own therapy that I have written into a book and hope to find help in editing and getting published. It is a how to book for anyone. I have found that it works 99% of the time. The 1% is either the person didn’t stick with their program or they were not ready to move on, both are ok just know it wasn’t the therapy that didn’t work. It works, folks. I have been using it for 7 years. I call this great new therapy “The Life Process” as I have found life to be a process. I also have been using The Life Process with unheard of success teaching it to teens and young adults on line for the past 7 years. I do this for free because I believe it is so important. This is also my way of giving back and using the gift God gave to me which is being able to connect with teens and young adults like nobody’s business. I could stand on a stage and talk all day to teens or in a small group or one on one. They are my passion in life. This is the dream that keeps me fighting for my life, allowing me to finish my book and get this therapy out there for anyone who wants to find their way to their truth and how to make life work the way they want it to. I could go on about The Life Process forever because of what I have seen it do with kids who had no hope and felt they had no where to turn. That is why I keep my teen site free. The kids also give me a reason to fight and not quit. I have to be honest with them because there are times I can not write to them because of my physical state. Also I use to have kids who wanted to talk more than write call me and I would teach my Life Process over the phone. But now I am deaf and I felt I needed to tell them why I could not talk on the phone anymore. It was very sad for me to give that connection up. I just would not be able to understand what they were saying. I get kids from all over the world who write and ask me to teach them how to get their lives together. Kids sought me out on my website. It was not originally a site for kids it was a site for the ill, disabled and those in chronic pain. But they didn’t like my “can do” attitude and it totally flopped. Out of no where teens started writing me and saying they liked what they read on my site. I still get notes from kids surfing through saying “cool site.” Kids and my therapy are my life and my will to endure whatever I have to, to finish my work. I want to leave a legacy like everyone else does. I couldn’t have children so kids all over the world are my children and my book I pray will be my legacy. I feel my life and all that I have been through will have been worth it if I can leave my book. The therapy will sell itself that, I have no doubt.
Please visit my teen site at www.lookingforadvice.org and read some amazing stories that this therapeutic technique has inspired. Read an overview of The Life Process also on the site.

I brought all that up for a reason and now I can’t think of the reason other than I want you to know me a little better and what my life is about now. What motivates me, why I am even doing this and most of all what I hope to accomplish from doing this Chronicle. The kids, the therapy and the book are my life, my passion, my dream and I am going to fight to finish my work giving hope to kids who see none, to inspire, change or save any lost young person. I really do practice “leave no child behind.”

Oh I know why I brought all this up. How The Life Process came into being and has spread to being what I consider the best new therapy for helping our young people find their way in the new world of the 21^st century, including how to restructure our societal methods of dealing with different, troubled and even those that are lost. We are using 20th century rules, mindsets and techniques that are not working, that is easy to prove. It is time to meet the needs that are of today not yesterday. It is a whole new ball game since technology changed everything. We have to wake up and I have the wake up cup of coffee in my therapy. Ok enough about that, I either sold you or I didn’t (smile).
I was at a crossroads back in the 90’s. I had been going down hill steadily and was literally homebound and basically bedridden for six years. I was slowly dying but yet I had used those six years to study, research and learn all I could to find a way to save my life. I finally looked at myself and woke up to the fact that nobody was going to save me, not even the medical system. Talk about a lost and scary feeling that you are going down hill and nobody can help you. I have found that to be the worst, most lost well I can’t describe it but it is surreal. So I said Mary-Anne you have all these degrees, experience, talent and all the knowledge you have learned over these past six years why aren’t you using all of this to save yourself? I then started on my quest to put together all of what I had acquired study it all and develop my own therapy and techniques to save my life. It took several years in the compiling, making it come together in a step by step process that I could follow and use in any situation to find solutions to whatever I might come up against. You have to remember everything that we are taught about life did not include any kind of knowledge or even address what happens if you lose your health, everything you know, no longer applies, all the rules and so called life skills go out the window and we become totally disoriented and lost. It is no differnt than a devastating hurricane it just never ends which if you can imagine is a horrible place to have to never leave, a constant hurricane going on. I was totally wiped out as a person and so was my whole world as I had known it. Believe me when I say there is no one to turn to for answers. There is nothing absolutely nothing that I did not try in my quest to get help. I did all the conventional methods through the medical system. I tried every known alternative method. I even tried any kind of bizarre claim from anyone who said they could help me. I had my demons cast out, my chakras balanced, you name I have had it done. I read every book I could get my hands on about how I was responsible for the situation I was in and only I could change it by following all of these New Age practitioners. I listened to motivational tapes, spiritual tapes, meditation tapes. I studied all the different religions of the world searching for the truth and a door out of my nightmare. I gained much knowledge but I also felt guilty and like a failure. I got to where I was convinced I wanted to be ill and that I didn’t have enough faith because if I did I would be well. I wasn’t one of the “chosen few” sorry some of us don’t get well no matter what we do. I wish I were one of those who after all my work, discipline and changing of my thinking I would wake up and be physically well again.
What I did wake up to was that there were lots of people like me who got ill or disabled and it isn’t our fault and we are not at fault. It is what it is so I decided to take back control over my life and my health, from there I got angry. TO me it was healthy anger and it is what motivated me from there on in.

That is when I really decided that I wasn’t going to put my faith in anyone other than me and my spiritual beliefs as I knew them. That is when “true” enlightenment for me started. I realized and proved to myself that all of my life’s answers are within me, just like yours are in you and it is true. That is wonderful now my faith is where it should be and I save alot of money not buying CD’s or books on someone else’s answers to their life.

The Life Process takes you inside yourself and teaches you how to find, use and become all that already lives within you and is just waiting for you to discover yourself. That’s why it can’t fail. It is you just being you. How simple can it get, yet we complicate our lives so much. Oh well let’s go on.

Out of all of this and much much more came “The Life Process” which has saved my life many a times. It has also given me back my power, changing me from a Victim to a Victor. This in and of itself makes The Life Process more than I could have hoped for. But for it to take on a life of its own through adolescents and young adults, has truly made it a miracle that is happening on a daily bases through my teaching it to any kid who finds there way to my site. I teach them to turn their own lives around. Basically it empowers them with all the knowledge, skills and techniques to make their live’s work. So I have named my therapy “Life-Works!” that is also the name of the book.

It is amazing how something evolves even without our help. The more I see this happen the more humble I become and realize just how our ignorance blinds us to the fact that life does work, sometimes literally in spite of our stepping in and trying to take over. Yet we take credit for it. I have never heard or seen a story where there was not unexplainable happenings that had to come into play for the person to have made it and without those unexplainable interventions the person most likely would not have made it. Think about that. All the people I have watched on Biography never fail to mention these unexplainable happenings but they know and give credit to them.

So I do not take credit for “The Life Process” I am a teacher of it. I know I couldn’t have created such a successful therapy without help or known that it could really work on adolescents. What Life Works teaches literally saves them from themselves, from their environment empowering them with all that they need to make a success out of whatever life has dealt them.

I am honored to be a small part of this miracle that is unfolding. I hope that I can get Mary-Anne on her feet to where she can introduce The Life Process through her book and if I get real lucky I will someday be standing in front of school systems, parents, kids, the Judicial system teaching what I do best and all of this will be a faint memory that comforts me as I smile and know it ended and I have just started.
Well, your coffee break is over and I must get started on my day.

My entry for today I will write later as to what I must face each day and how I am constantly making lemonade out of lemons. I mean I have an orchard (smile) and still don’t have enough lemons. Just living takes all that I am. But each day I find I am drinking my lemonade. Life does work friends it is all in how we choose to see it.

Have a wonderful day and a glass of Lemonade, Mary-Anne

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