February 24th
I did some yoga tonight, it felt good to feel my body again...
Like a dragon awaking from a deep sleep. I feel as if I become one with each muscle again. oh how good it feels to have my neck back, stretching is such sweet bliss...
I am alive again. I can sense I am coming back, with each stretch. The movements echo as I hear my bones twist inside a muscle as hard as cement drying. I inhale for the first time in weeks. Not the shallow breath but the breathing in of the universe, the inhale of life...
With each breath, my body is awaking and my mind is coming out of the fog... Is that me I sense.. Slowly coming back to life.... I have missed her so
Friday, February 25, 2011
Sunday, February 20, 2011
The Gift Of My Illness
Its have been quite an adventure since the early years. In a desperate attempt to regain my life and my hopes for the future something wonderful happened. I started to find and reconnect to a lost part of myself!
As I had many times through out my childhood and teen years I would reinvent myself to save myself. Along with changing my eating habits I discovered a world I had forgotten in my chase for the American dream. The world of mind, body and spirit.
Walking through a bookstore looking for inspiration on building immunity and discovering to the source of my illness. I found the new age section ( this area should be renamed.. Modern Thinking :) ) as I looked at the titles a woman standing there asked If I was looking for something special, at the time I wasn't but she was about to change my life. We had a short exchange but she told me of a store that had a lot more books and she thought I should go there. I know now that she was an Angel. Not my first by no means but the first in a long time I had paid attention to. At this time I had return to church and had become pretty active, even becoming a Chaplin. My family including my mother had been not only active but my mother and I were working for the church. I went home thinking about my encounter and my mind went back to when my father had died.
In the early nineties within a three month period I lost my father to cancer and then my first marriage ended. ( yes I have been married twice) This to was a devastating time for me. The stress of my fathers passing and my first husband leaving took its toll on me and I found myself once again alone and depressed. I remember a short time before my father passed I was sitting outside the store I worked for on a break when a little old lady came and sat next to me. I will never forget her, she was the grandmother looking type with a grayish brown wig that I want to straighten for her. We both sat not speaking but she keep looking at me. I tried to ignore her thinking I had to much on my mind to speak to someone I didn't know. She wouldn't stop and before I knew it we were talking. I can not tell you what was said between us but it was life changing. As she got up to leave it was also time for me to go back to work. At that time the store I worked in had large glass windows that were like walls. As we both walked I could see her through the glass walking beside me smiling as she slowly made he way to the exit. I thought to myself I should invite her to lunch sometime because the feeling she left me was one that even as I type this I cant put into words. At that moment the glass became wall and she disappeared. I raced around to catch her and to my surprise she was gone. I remember going out the exit looking in the parking lot but she had disappeared! there was no way she had of gotten that far. I walked back in in disbelief. Was she real, what had just happened? in the next few days I pondered the experience and thought was I visited by an Angel? Within the next week I was talking to an employee of mine about what had happened and she told me her mom believed in that kind of stuff and told me about JZ Knight.. I had never heard of her and at this point I was open to anything that would answer the question "who was that women". In the weeks following I quit that job to spend more time with my dad and in a short time later he passed. Death became real and life after death became a obsession for me. Where did my dad's soul go and why did that women come visit me. I decided to go to a pastor and ask some questions.( This was an eye opener I should of remembered but somehow I always have believed in second chances) At the time I wanted to know where is heaven and do angel come visit people like me? Big mistake, his answers were vague and from what he said Angels stopped visiting people when the bible was finished being written. Guess no one is worthy of a visit anymore or knowing where heaven really is. I was at a lose and the depression was now setting in when when a piece of paper lying on the floor once again set me on the path of finding answers. It was notes I took the day my employee told me about JZ knights and on the bottom was a name of a store, a New Age store. If the pastor didn't have answers maybe this store did. I will not bore you with my visit to the store for as a mouse I went in bought a couple books and some subliminal tapes (yes cassettes..LOL google if your not sure what those are) and went on my way. Over the next year my life even though it was rocky the tools I got that day pulled me out of what could of been a spiral down hill.
Could this store have the same effect. Anything was better than what I had just been through and if it worked before maybe it could work again. Within the next week I found myself standing in a modest bookstore. It had just opened a few months before and the women working there seemed to be more like a lost family member than a store owner. We struck up a friendship and every chance I had me and Austin would go to the store and visit. I shared with her my medical challenges and she handed me a book.. Louise Hays "Heal Your Body" I looked at the cover and realized I have that book. Those many years before this was one of the book I had got at the other store. To my surprise I went to my mothers and covered in dust in a box with a stack of others books and tapes there it was! It was like a treasure chest of tool long forgotten. along with my new found treasures and a new store I was armored for change and on the rode to what I hoped was wellness. One problem, it was a New Age Store. There was something that was coming to the surface through my illness and my new found awaking of truths. A childhood stuffed and hidden from the outside world. A past that I wont go into now but one that was now asking to be acknowledged. It was strange to go to work at the church and than on Sunday listen to the sermon, while looking forward to going to the store and hanging out with this beautiful pagan women. Strange things began to happen to me, wonderful and beautiful things. In no time I was collecting and reading books, listening to mediation tapes and my life was looking up. Maybe I was becoming to happy. The church and the pastors where starting to wonder why I wasn't coming to them for everything anymore and I was way to happy for a girl who the months before was stuck in bed. One Sunday while listen to the sermon my hand as if by impulse picked up a pen and started to write. I could feel everyone in the pew looking at me as if to silence the noise of the pen on the paper but I could not. Even my husband gave me a look and like a helpless child I said I cant stop. As soon as my hand stop and the pen dropped I hide the paper and lowered my head. I couldn't wait to leave to read what I had just wrote. After church was Sunday school and as we sat at the table my husband was questioning what had just happened. There was a worksheet going around and as my mother sat mine in front of me I was to busy opening the paper to notice. I looked at what I had wrote and it seemed to be answers to questions but the questions were missing. I started to put the paper back in my bible and get my attention back on Sunday school when I noticed the worksheet. I took a double look and pulled out the paper back out from my bible and was speechless to find what I had wrote was the answers to the questions I hadn't seen yet. I remember feeling confused but excited all at once. What was happening was new but the sense of knowing the future was not. I took a deep breath and knew I was going to have to tell my husband the truth. That what was happening was something that has been with me since I was little and that now it was happening again. This time it was different. I couldn't control my hand and it happen in church. We all rode home in somewhat of a silence. That night I remind my husband of a date we went on early on in our relationship. One where I predicted that there would be trouble with the limo and there was. where his dismissal of what I was speaking almost got us killed. He agreed that there was something to it but still wasn't sure how much creditability he was willing to give to it. .I guess this would be a good time to remind you that this is also during the time of undiagnosed illness with a hint of I must be crazy. The timing of this couldn't of been worse. I look back now and think my husband thought well maybe this would replace the sick thing. To humor me and in his own way to support me he just smiled and went about his business. Within a short time I was kicked out of the church and accused of being involved in a cult. That's another story in its self. Lets just say never ask a pastor if they believe in Angels, Hear voices in their head telling them things..LOL, or ask them about church history.. To say my life after that day took a 360 would be a understatement but now looking back it was part of the healing process and a rediscovering of who I am and why I am here. Over the following years I started working in that store and many others. I have had many experiences that confirmed a hidden truth about myself and about the planet we live on. I became a lecture and teacher on many subjects that over the years have been helpful in my journey. I became a soul reader and channeler and have been touched by many of the people spirit has placed on my path. I some days feel like what I m going through now is another gift in this journey of self discovery and personal empowerment. The gift of transformation... I cant wait to see what I do with this challenge and what I become when it is complete.... What about you?
As I had many times through out my childhood and teen years I would reinvent myself to save myself. Along with changing my eating habits I discovered a world I had forgotten in my chase for the American dream. The world of mind, body and spirit.
Walking through a bookstore looking for inspiration on building immunity and discovering to the source of my illness. I found the new age section ( this area should be renamed.. Modern Thinking :) ) as I looked at the titles a woman standing there asked If I was looking for something special, at the time I wasn't but she was about to change my life. We had a short exchange but she told me of a store that had a lot more books and she thought I should go there. I know now that she was an Angel. Not my first by no means but the first in a long time I had paid attention to. At this time I had return to church and had become pretty active, even becoming a Chaplin. My family including my mother had been not only active but my mother and I were working for the church. I went home thinking about my encounter and my mind went back to when my father had died.
In the early nineties within a three month period I lost my father to cancer and then my first marriage ended. ( yes I have been married twice) This to was a devastating time for me. The stress of my fathers passing and my first husband leaving took its toll on me and I found myself once again alone and depressed. I remember a short time before my father passed I was sitting outside the store I worked for on a break when a little old lady came and sat next to me. I will never forget her, she was the grandmother looking type with a grayish brown wig that I want to straighten for her. We both sat not speaking but she keep looking at me. I tried to ignore her thinking I had to much on my mind to speak to someone I didn't know. She wouldn't stop and before I knew it we were talking. I can not tell you what was said between us but it was life changing. As she got up to leave it was also time for me to go back to work. At that time the store I worked in had large glass windows that were like walls. As we both walked I could see her through the glass walking beside me smiling as she slowly made he way to the exit. I thought to myself I should invite her to lunch sometime because the feeling she left me was one that even as I type this I cant put into words. At that moment the glass became wall and she disappeared. I raced around to catch her and to my surprise she was gone. I remember going out the exit looking in the parking lot but she had disappeared! there was no way she had of gotten that far. I walked back in in disbelief. Was she real, what had just happened? in the next few days I pondered the experience and thought was I visited by an Angel? Within the next week I was talking to an employee of mine about what had happened and she told me her mom believed in that kind of stuff and told me about JZ Knight.. I had never heard of her and at this point I was open to anything that would answer the question "who was that women". In the weeks following I quit that job to spend more time with my dad and in a short time later he passed. Death became real and life after death became a obsession for me. Where did my dad's soul go and why did that women come visit me. I decided to go to a pastor and ask some questions.( This was an eye opener I should of remembered but somehow I always have believed in second chances) At the time I wanted to know where is heaven and do angel come visit people like me? Big mistake, his answers were vague and from what he said Angels stopped visiting people when the bible was finished being written. Guess no one is worthy of a visit anymore or knowing where heaven really is. I was at a lose and the depression was now setting in when when a piece of paper lying on the floor once again set me on the path of finding answers. It was notes I took the day my employee told me about JZ knights and on the bottom was a name of a store, a New Age store. If the pastor didn't have answers maybe this store did. I will not bore you with my visit to the store for as a mouse I went in bought a couple books and some subliminal tapes (yes cassettes..LOL google if your not sure what those are) and went on my way. Over the next year my life even though it was rocky the tools I got that day pulled me out of what could of been a spiral down hill.
Could this store have the same effect. Anything was better than what I had just been through and if it worked before maybe it could work again. Within the next week I found myself standing in a modest bookstore. It had just opened a few months before and the women working there seemed to be more like a lost family member than a store owner. We struck up a friendship and every chance I had me and Austin would go to the store and visit. I shared with her my medical challenges and she handed me a book.. Louise Hays "Heal Your Body" I looked at the cover and realized I have that book. Those many years before this was one of the book I had got at the other store. To my surprise I went to my mothers and covered in dust in a box with a stack of others books and tapes there it was! It was like a treasure chest of tool long forgotten. along with my new found treasures and a new store I was armored for change and on the rode to what I hoped was wellness. One problem, it was a New Age Store. There was something that was coming to the surface through my illness and my new found awaking of truths. A childhood stuffed and hidden from the outside world. A past that I wont go into now but one that was now asking to be acknowledged. It was strange to go to work at the church and than on Sunday listen to the sermon, while looking forward to going to the store and hanging out with this beautiful pagan women. Strange things began to happen to me, wonderful and beautiful things. In no time I was collecting and reading books, listening to mediation tapes and my life was looking up. Maybe I was becoming to happy. The church and the pastors where starting to wonder why I wasn't coming to them for everything anymore and I was way to happy for a girl who the months before was stuck in bed. One Sunday while listen to the sermon my hand as if by impulse picked up a pen and started to write. I could feel everyone in the pew looking at me as if to silence the noise of the pen on the paper but I could not. Even my husband gave me a look and like a helpless child I said I cant stop. As soon as my hand stop and the pen dropped I hide the paper and lowered my head. I couldn't wait to leave to read what I had just wrote. After church was Sunday school and as we sat at the table my husband was questioning what had just happened. There was a worksheet going around and as my mother sat mine in front of me I was to busy opening the paper to notice. I looked at what I had wrote and it seemed to be answers to questions but the questions were missing. I started to put the paper back in my bible and get my attention back on Sunday school when I noticed the worksheet. I took a double look and pulled out the paper back out from my bible and was speechless to find what I had wrote was the answers to the questions I hadn't seen yet. I remember feeling confused but excited all at once. What was happening was new but the sense of knowing the future was not. I took a deep breath and knew I was going to have to tell my husband the truth. That what was happening was something that has been with me since I was little and that now it was happening again. This time it was different. I couldn't control my hand and it happen in church. We all rode home in somewhat of a silence. That night I remind my husband of a date we went on early on in our relationship. One where I predicted that there would be trouble with the limo and there was. where his dismissal of what I was speaking almost got us killed. He agreed that there was something to it but still wasn't sure how much creditability he was willing to give to it. .I guess this would be a good time to remind you that this is also during the time of undiagnosed illness with a hint of I must be crazy. The timing of this couldn't of been worse. I look back now and think my husband thought well maybe this would replace the sick thing. To humor me and in his own way to support me he just smiled and went about his business. Within a short time I was kicked out of the church and accused of being involved in a cult. That's another story in its self. Lets just say never ask a pastor if they believe in Angels, Hear voices in their head telling them things..LOL, or ask them about church history.. To say my life after that day took a 360 would be a understatement but now looking back it was part of the healing process and a rediscovering of who I am and why I am here. Over the following years I started working in that store and many others. I have had many experiences that confirmed a hidden truth about myself and about the planet we live on. I became a lecture and teacher on many subjects that over the years have been helpful in my journey. I became a soul reader and channeler and have been touched by many of the people spirit has placed on my path. I some days feel like what I m going through now is another gift in this journey of self discovery and personal empowerment. The gift of transformation... I cant wait to see what I do with this challenge and what I become when it is complete.... What about you?
Saturday, February 19, 2011
A peek at me and the early years...
This blog was set up as a way for me to be able to express my thoughts and allow my family and friends to better understand what it is to be me now but also to understand what it is like to live with an illness. I have found it quite a challenge to let people into my world or to even explain what I have been going through. It has been easier for me to pop my head out and keep in touch than to allow them to see for themselves.
As the weeks have gone by I think of all the other people who like myself are dealing with the similar challenges that surround an illness where there is no cure or treatment. An illness that in the main stream is unknown or even misunderstood. An Illness that on the outside leaves no scares or wounds but on the inside is slowly killing you. That is not even including the emotional and mental aspect of what is happening. Everyone has a story and this is mine.
About eight years ago while working I started to lose vision in one of my eyes. At the time I was about to be married and my life even though it had been a hard and rocky one had started to look quite rosy. I was hoping for the knight in shining armor and the white picked fence and I was heading that way. I left work and knew something was happening. I couldn't explain it but I never expected it would turn out the way it did. Of course by the time I got in to see the doctor my eyesight had returned and it seemed to him that all was fine. He took some blood test ... ( which now I know really means nothing if they dont know what they are looking for) and everything on a simple routine test came out normal. Now this did not stop what had begone to happen just because the test were normal. I had the recurring eye problem and now it was joined by nerve pain and tingling and numbness. Now this couldn't stay in on place and it moved from day to day, moment to moment and at times left me unable to move my right leg. I even for a short time had to use a cane to walk. Now at that time my brain was sharp and my attitude one of lets get to the bottom of this. So I opted for any test that would give us an answer and at the time we had insurance so it was a slow moving train but at least we were moving.
With each test the words normal would echo and my heart would drop. Also with each normal the family support and concern turned to assumption and judgement. I was not making things up and if they only knew how I longed to be like them in more ways than they knew it might of been replace with compassion and empathy. In time as we planned the wedding and I just focused on that and hoped in time what was happening to me would go away but instead I learned to live with it. Each day keeping the pain and uncertainty to myself. Everyone around me seemed to to relieved they could talk about the latest TV show or some new toy they bought and I and what I was going through became a faded memory. I was married and it was going good. When things came up I dealt with them best I could. My husband at the time either embarrassed or not understanding him self choose to keep a lot from his family which left me looking like someone I wasn't. when I would ask him to tell them I could go to events because I wasn't feeling good he opted to just say I wanted to stay home and he would tell me they wouldn't understand. This is where things started to be very lonely for me.
Than my son was born and during the pregnancy I was at peace. It seemed that what ever was happening took a back seat to Austin's coming. This was not to say that I did not have a complicated pregnancy and birth but it was all a normal part of a 35 year old having a baby. Now what I have left out of the story that at the time no one thought about and I too had shoved to the back of my mind was I had started to get the shingles at the age of thirty. I did not only get them once, I got them every month and at the time (and still now) Valtrex would do nothing to stop them. My biggest fear surrounding Austin birth was a breakout and with luck and God on my side we made it through. It seemed for nine months I was free to enjoy the thought of being a new wife and a new mother and the past was behind me.. Wow was I wrong.
Shortly after his birth everything came back and with vengeance did it come. I was starting to have to go to bed the moment my husband came home at 6 because I was simply exhausted. Everyone around me including my husband I'm sure was starting to make assumption of why. ( I have learned everyone thinks they know why you do something even when they dont have a clue. ) I knew it was coming back and this time I had a son to think of. So it started again, this time a friend suggest we go with a PPO to move things along faster and we did. it cost more but I and the doctors had more control. I picked a new doctor who seemed willing to look at all avenues and away we went. Now here is where it got tricky. You see my friend told me something I will never forget about GP's (general practitioners ) they call it a practice for a reason, they are practicing on you what they learned in books and dead people. Now that was a eye opener! So now armer with the internet and now Google I was off to get to the bottom of this once and for all. Every time Austin went down for a nap I was at my computer. Now in some aspects this was helpful but in others it was not. I must of seemed like a nut every week coming up with what I might have, telling my husband than off to the doctor for the test. Once again each test was normal. I had every opening probed and every test possible done and nothing moved us closer. Now you must realize by this time I was just using the doctor as a can you okay this. I was starting to get discouraged and it was starting to look like maybe I was crazy. So I surrendered and started taking antidepressants and felt like my whole world was falling apart. then a call came from the doctor. I have some good news and some bad news. At this point him just calling me was a plus. The test showed that you have EBV Epstein Barr Virius . a chronic form of Mono. The bad news is not enough people have it so there is little research being done and there is nothing we can do. My heart sunk! here I had my answer but yet I was no closer to getting my life back or have the life I dreamed of then we were years before. I decide to do my own investigating and he was right, there was not much on the subject at the time all I knew was it was an autoimmune disease. I started by going to an immune doctor and was tested for allergies so we could clear the house and take control over my environmental to cut down on triggers and reoccurring flares. Now this was good we had something to work with but the shingle attacks still came and I was noticing other things happening to me mentally. I changed my eating habits and along the way started to add things to my life to cut down stress and move my life in a new direction but the years before had created misunderstanding with family and friends and at times seemed to separate me and my husband. Having a name did not stop it from happening and as time passed I seemed to be the only one taking it serious. I know life goes on but for me this was becoming my life. I too had a son I was raising who didn't need to grow up watching a sick mother. I didn't know what to do here I had something that had no treatment, no cure and no one to really talk about it with. So I did what I have done in the past, if everyone else could be in denial, why couldn't I . If the doctors and researcher weren't concerned with it why should I. I keep seeing scene's from the movie beach running through my head. In the scene where the fisherman was dying and he was ruining everyones fun. So they took him to the other side of the island so they could get on with their lives without having to hear or watch him die. That is the truth of our society, out of sight out of mind. Living in denial and letting those around me assume what was going on with me lead me to where I am once again but this time thing are so much different. I no longer have a husband by my side even if he was in denial, my son is now 8, most of my friends from then are gone and the ones I have now still are baffled by a cunning and ruthless virus that has taken so much from me is now back and looking to take my life. Somethings never change, my family is still in denial, my sons father still thinks I'm a drama queen and that when every I'm trying to better my life this is an excuse I use to cope out. (Now that makes a girl feel special) and there are still doctors that want to dismiss me more easily than try to help me stay alive. One important thing has changed I have found a doctor who has taken me serious and looked at me as a mother and a women not just a patient. He out of everyone has saved my life! The test he took came up with something and this time everything was not normal but this time it might just be to late. You see what started out as the shingles, than developed a secondary virus EBV has now because I went untreated and not taken serious by doctors, family member, friends and even myself has turned into a rare a deadly virus that everyday threatens my life and is trying to take the most important part of me with it my brain. They now suspect I have viral encephalitis, and not just any kind, HSE the rarest form with the highest mortality rate 70-80%. Guess Denial Didn't work so good?
As the weeks have gone by I think of all the other people who like myself are dealing with the similar challenges that surround an illness where there is no cure or treatment. An illness that in the main stream is unknown or even misunderstood. An Illness that on the outside leaves no scares or wounds but on the inside is slowly killing you. That is not even including the emotional and mental aspect of what is happening. Everyone has a story and this is mine.
About eight years ago while working I started to lose vision in one of my eyes. At the time I was about to be married and my life even though it had been a hard and rocky one had started to look quite rosy. I was hoping for the knight in shining armor and the white picked fence and I was heading that way. I left work and knew something was happening. I couldn't explain it but I never expected it would turn out the way it did. Of course by the time I got in to see the doctor my eyesight had returned and it seemed to him that all was fine. He took some blood test ... ( which now I know really means nothing if they dont know what they are looking for) and everything on a simple routine test came out normal. Now this did not stop what had begone to happen just because the test were normal. I had the recurring eye problem and now it was joined by nerve pain and tingling and numbness. Now this couldn't stay in on place and it moved from day to day, moment to moment and at times left me unable to move my right leg. I even for a short time had to use a cane to walk. Now at that time my brain was sharp and my attitude one of lets get to the bottom of this. So I opted for any test that would give us an answer and at the time we had insurance so it was a slow moving train but at least we were moving.
With each test the words normal would echo and my heart would drop. Also with each normal the family support and concern turned to assumption and judgement. I was not making things up and if they only knew how I longed to be like them in more ways than they knew it might of been replace with compassion and empathy. In time as we planned the wedding and I just focused on that and hoped in time what was happening to me would go away but instead I learned to live with it. Each day keeping the pain and uncertainty to myself. Everyone around me seemed to to relieved they could talk about the latest TV show or some new toy they bought and I and what I was going through became a faded memory. I was married and it was going good. When things came up I dealt with them best I could. My husband at the time either embarrassed or not understanding him self choose to keep a lot from his family which left me looking like someone I wasn't. when I would ask him to tell them I could go to events because I wasn't feeling good he opted to just say I wanted to stay home and he would tell me they wouldn't understand. This is where things started to be very lonely for me.
Than my son was born and during the pregnancy I was at peace. It seemed that what ever was happening took a back seat to Austin's coming. This was not to say that I did not have a complicated pregnancy and birth but it was all a normal part of a 35 year old having a baby. Now what I have left out of the story that at the time no one thought about and I too had shoved to the back of my mind was I had started to get the shingles at the age of thirty. I did not only get them once, I got them every month and at the time (and still now) Valtrex would do nothing to stop them. My biggest fear surrounding Austin birth was a breakout and with luck and God on my side we made it through. It seemed for nine months I was free to enjoy the thought of being a new wife and a new mother and the past was behind me.. Wow was I wrong.
Shortly after his birth everything came back and with vengeance did it come. I was starting to have to go to bed the moment my husband came home at 6 because I was simply exhausted. Everyone around me including my husband I'm sure was starting to make assumption of why. ( I have learned everyone thinks they know why you do something even when they dont have a clue. ) I knew it was coming back and this time I had a son to think of. So it started again, this time a friend suggest we go with a PPO to move things along faster and we did. it cost more but I and the doctors had more control. I picked a new doctor who seemed willing to look at all avenues and away we went. Now here is where it got tricky. You see my friend told me something I will never forget about GP's (general practitioners ) they call it a practice for a reason, they are practicing on you what they learned in books and dead people. Now that was a eye opener! So now armer with the internet and now Google I was off to get to the bottom of this once and for all. Every time Austin went down for a nap I was at my computer. Now in some aspects this was helpful but in others it was not. I must of seemed like a nut every week coming up with what I might have, telling my husband than off to the doctor for the test. Once again each test was normal. I had every opening probed and every test possible done and nothing moved us closer. Now you must realize by this time I was just using the doctor as a can you okay this. I was starting to get discouraged and it was starting to look like maybe I was crazy. So I surrendered and started taking antidepressants and felt like my whole world was falling apart. then a call came from the doctor. I have some good news and some bad news. At this point him just calling me was a plus. The test showed that you have EBV Epstein Barr Virius . a chronic form of Mono. The bad news is not enough people have it so there is little research being done and there is nothing we can do. My heart sunk! here I had my answer but yet I was no closer to getting my life back or have the life I dreamed of then we were years before. I decide to do my own investigating and he was right, there was not much on the subject at the time all I knew was it was an autoimmune disease. I started by going to an immune doctor and was tested for allergies so we could clear the house and take control over my environmental to cut down on triggers and reoccurring flares. Now this was good we had something to work with but the shingle attacks still came and I was noticing other things happening to me mentally. I changed my eating habits and along the way started to add things to my life to cut down stress and move my life in a new direction but the years before had created misunderstanding with family and friends and at times seemed to separate me and my husband. Having a name did not stop it from happening and as time passed I seemed to be the only one taking it serious. I know life goes on but for me this was becoming my life. I too had a son I was raising who didn't need to grow up watching a sick mother. I didn't know what to do here I had something that had no treatment, no cure and no one to really talk about it with. So I did what I have done in the past, if everyone else could be in denial, why couldn't I . If the doctors and researcher weren't concerned with it why should I. I keep seeing scene's from the movie beach running through my head. In the scene where the fisherman was dying and he was ruining everyones fun. So they took him to the other side of the island so they could get on with their lives without having to hear or watch him die. That is the truth of our society, out of sight out of mind. Living in denial and letting those around me assume what was going on with me lead me to where I am once again but this time thing are so much different. I no longer have a husband by my side even if he was in denial, my son is now 8, most of my friends from then are gone and the ones I have now still are baffled by a cunning and ruthless virus that has taken so much from me is now back and looking to take my life. Somethings never change, my family is still in denial, my sons father still thinks I'm a drama queen and that when every I'm trying to better my life this is an excuse I use to cope out. (Now that makes a girl feel special) and there are still doctors that want to dismiss me more easily than try to help me stay alive. One important thing has changed I have found a doctor who has taken me serious and looked at me as a mother and a women not just a patient. He out of everyone has saved my life! The test he took came up with something and this time everything was not normal but this time it might just be to late. You see what started out as the shingles, than developed a secondary virus EBV has now because I went untreated and not taken serious by doctors, family member, friends and even myself has turned into a rare a deadly virus that everyday threatens my life and is trying to take the most important part of me with it my brain. They now suspect I have viral encephalitis, and not just any kind, HSE the rarest form with the highest mortality rate 70-80%. Guess Denial Didn't work so good?
Monday, February 14, 2011
Waking up to a new morning.....
This morning as I sat up in bed I realized that once again day has broken and I made it through another day without going to the hospital. To most this would be a strange thing to think as you open your eyes but to me this is my life....
As I start to eluate my body by taking a minute to notice how I feel, I wait. Each second is like a rocket checking its engines before lift off. How does my head feel,is my lymphoid's swollen, is that nausea I feel, what is my blood pressure, ect. It seems like the daily mental check list has become part of who I am and also a reminder of what I'm living with. Today weather I can or if I wanted to get out of bed I must, I have my son to get off to school and another doctors appointment to keep. Speaking of appointments I bet get ready. Today its the nose and throat surgeon. He will just repeat what Dr. P. said and I will get the confirmed news its worse than what we had hoped.
As I start to eluate my body by taking a minute to notice how I feel, I wait. Each second is like a rocket checking its engines before lift off. How does my head feel,is my lymphoid's swollen, is that nausea I feel, what is my blood pressure, ect. It seems like the daily mental check list has become part of who I am and also a reminder of what I'm living with. Today weather I can or if I wanted to get out of bed I must, I have my son to get off to school and another doctors appointment to keep. Speaking of appointments I bet get ready. Today its the nose and throat surgeon. He will just repeat what Dr. P. said and I will get the confirmed news its worse than what we had hoped.
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