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?
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