Growing up we all had ideas of what we wanted to be when we got older. For me it was a dancer. Not the one with the pole but the one with pointe shoes. And I am sure a few of you had ideas in their heads bout how your future would be. I doubt that you would find one person who wanted bad things to happen to them. That they said yep I am going to quit school, live a life of crime, go to prison and be murdered. I know I don’t know anyone who had that as their dream. And I bet that none of you every thought you could or would be sick. Fighting for your life with everything in you. I know that was not a goal I had aspired too. But here it is.. That crazy word with a lot of meaning.. Here is life! It is a no holds barred situation that keeps coming no matter how much you want it to stop. People die, get married, have kids, go to jail, gain weight, fall in love, get heart broken, get sick and so on and so forth. It is not all great fun day in day out. And nothing like I expected. I think growing up I had a vision of what I wanted my life to be. I wanted to be this great dancer, have a good relationship, have kids, have a nice home, nice car, great friends and no worries. What I got was this…. depends on how or who is looking at this.. but I am a great dancer( pole and pointe shoes.) I have an amazing son, not so great relationships, I have a roof over my head but it is not mine, addiction for 17 years, a few nice car, a deadly disease and as far as friends I have learned so much about friends and friendships to the point where I have just a few. None of the things that I looked for growing up.
In the grand scheme of things I was very selfish with my life. And if I had to do over I would not. I just see and notice more since I have been sick. I know that I do have friends and some family that love and care about me. I have mended some relationships and I have lost some. And today I am okay with it. But looking at my life and all that I have been through I guess I figured while I was growing up life would be great when I got older. Well I was wrong again. I have learned that the big house, fancy car, money, people and things are not the big picture. The big picture is this: One you have something that you can not replace.. like health… do all those things matter anymore? And actually they do not. Because all the flashy stuff and the nice things are not making you breath or live longer. Granted I have heard it is better to cry in a BMW than on a bicycle.. But in reality it is just what it is.. It is stuff. Little things you have paid for that can break or stop working. Can get stolen and thrown away. But your health.. well it can not be bought , stolen, thrown away, break or be paid for. The one thing in this life that I never once thought about or really even cared about is the one thing now that it is gone.. I wish I could get it back.. To bad you can not wish it better. I have lost a lot of things in my life but the one thing I will never get back is the one thing that means everything right now… My health.
In life there are a few things that no matter what we have to do. We all live. You have to do that on a daily basis. Even if you do not want to . We have to follow rules and pay taxes. If you do not both of those can land you serving time. And the last thing is death. All of us have to die. We can not avoid it. It is just part of life. And at some point in everyone of our lives we have lost someone we loved and we asked the why’s and what if’s. Some came with answers and others did not. But either way we had to live through it.
Not until I got sick I never really gave death or dying much thought. I hurt when people I knew or loved passed on. But in the reality of it all I never thought about me dying. Not until I had a doctor lay down the scariest truth I had ever heard. And at that point I was grasping straws in that moment and every possible thing passed through my mind. I questioned everything. Would I go to heaven? Hell? Will it hurt? Would anyone care? And I began to think about things that I had never really sat back and thought about before. I mean I had done some pretty bad things in my life and I thought is that what I will be remembered by? All the bad? And it hurt to think that yes that was a possibility. I would be remembered for the lies and hurt I caused during my addiction. That hurt to think that may be where it would end up. That I would be remembered by nothing good at all. And if you look at the big picture in your own lives.. What would you be remembered by? Think about it. In the world we live in people notice and remember the bad things far more often than the good. Could you say that people would remember you in a good way? To sit back and think about that question was one of the hardest things I had really ever done. At that point, I became bitter and angry but more at myself than anyone else. All the bad things I would be remembered by were all my fault those things I did were because of an action that I took and that is why it would forever be a part of my life. But I didn’t know hard until I met a pastor. And I was getting things in order for when the time comes. Which by the way is a lot harder than I thought it would be. And I sat and spoke to him and we discussed how I wanted the service to go. We spoke for a few hours and he said he could tell a “normal” funeral would not do me and the life justice. I agreed with him. But was curious at where he was going with this. He asked me to write a letter. In the letter he wanted me to write to my family and friends something they would remember me by. And he would read it when the time came. Now if you know me.. I use a lot of colorful language. So I felt that he may want to preach again. So I sat down and really thought about it. All I could picture was a church full of people I didn’t know. Sitting there and whispering about what I had done in my life and it was all negative. And it kind of made me mad. Sitting there I asked myself… April if you knew you were dying but you didn’t know when . What would you want your last words to the people that love you and care about you .. what would they be? If you think about it really it is not that easy. I mean of course you want it to be memorable . Something that they will sit back and say wow she really thought about that one. But for me that was not the route I wanted to go. I sat back and looked at the life I had lived to that point. The ups, the downs, and everything in between. And I could only come up with one word. The only word that made sense to me. Even if it didn’t make sense to anyone else. It made sense to me. And at that point.. I began to open my heart up and just put the pen to paper and let it all flow. Throughout my life there was one thing I lacked. And again I say a lot of it was by my own doings. But the one thing I longed for in this life was PEACE. I had never in my life had any peace. Not in my head, my heart, my addiction.. never in the whole time I was on this planet have I ever had peace. I didn’t know what it really meant. I had heard the term for many years. But to actually say I was at peace. Nope.. never..
So I decided that my last words I would ever be known for would be peace. The world we live in is so busy all the time. Everyday lives running around not looking at the big picture. I wanted to find that all my life. But I did not find it until I got sick. When I found out I was sick. I found my peace. And I didn’t know what it was at the time but after much thought and a look in the dictionary.. I had found it. I finally had peace. And I felt free. A free I had never had either. I was able to look back at all the things that had happened in my life-good and bad. And say I survived. I made it. I had been to hell and back already. I was alive for the first time. We live in a world where it is okay where we judge things by what is not “our” normal. But the reality of all our situations is this… WE ALL DIE! But for the first time in my life.. I WAS LIVING! Not just a shell of a person walking around just being.. I was able to see life for what it was. The beauty in things I took for granted that they would always be there. I was able to live for the very first time in my life. It may seem weird to some but when the doctors looked at me and said ” with treatment you have a 26% recovery rate .. without treatment you have a 0% recovery rate” … It put life and everything in it into a different light for me. And as many chances as I had been given that I just threw away be cause I took my life for granted. I now had the opportunity to LIVE! And that is what I have done. I have come to peace with myself and my life as it is right now. This very moment in time. I am at peace. Years ago those two words would have never made sense in the same sentence. But today I am here and I am alive. I have made it through hell and back again. I have found me and my purpose. And I am happy and free. And it is for no one to understand but me. I am no longer living for anyone else. I am taking this life and everything I am going through right now and I am holding on with both hands and I am not letting go. Granted none of us have an expiration date on us. I know that. I should have been dead many times over. But I also know that at 33 years old.. I am living and I am more alive than I have ever been.
So I leave you with this thought.. What would want to say to loved once if you had a chance to say anything to them before you passed .. what would you say?
Many of us have heard the saying that there is no price on ones life. I know I have. But the older I get the more I see that there is a price. Throughout our lives we have had to pay for things that makes our life not free. For instance, when you are sick you pay for medicine to get you well. Even though you may not have to do it often you do pend a few bucks here and there to get better. Well what about those people who have a chronic or terminal illness? Like me, I have HCV and the medicines that I have to have to save me at this point are running $120,000. And they make me sick. Now they have new meds that are supposed to be better on side effects and those run around a $1,000 a pill. To me that is crazy. I never thought that I would get sick and now that I have been through the treatment before I am realizing far to many times that the world and your health is in someone elses hands. I do not understand one but why the drug companies do not think about the little guy. I do not understand why the poor have to live and suffer why the rich do not. I look at people I know and it makes me sick all of the things we have to go through just to be better. Seeing as there is no “cure; so to speak for my illness. It pains me to think about other people in my situation. I have some people say not to complain about things because you can get insurance now. Well to that I say this. Is it fail for someone with a pre exsisting condition to have to pay thousands a month for a insurance that may or may not cover the meds you need once a month. Unfortunately that is what me and others have to face. Insurance companies that refuse to pay because it is not covered anymore. It makes me sick to think that someone who is like me can not pay to make themselves better.
I understand that everything has a price. But I realize that the one thing that is priceless can cost you so much more. I do not understand that at all. We all were given this life , yes even the big drug companies, to make it what we can. But I just do not get how my life can cost so much to save it? Is that like saying one persons life means more because they can pay for it? I know in my heart that there has to be a way somewhere that the ones that need it can get it. I bet they would not turn down their family member because they were sick. I know that the stigma with HCV is not a good one. And maybe they think because we have it we all got it the same way. I do not know . But regardless how we got it. I think we should be able to be treated and not have to cost us an arm and a leg. I am sickened by the though of some of the things I have read concerning the cost for a “cure”. And I look at the ones that I love and I know suffer with me and think to me their lives are priceless. I just do not understand if their lives are priceless to me .. what gives the companies that make the meds the right to put a price on anyone life.?
It is hard to explain to someone what this feels like if they have never been through it themselves. I am asked a lot..How are you feeling? I want to tell them but I do not think they will understand. So I use the old line.. I just don’t feel good. I figure that should cover the asking of more questions. When in reality every bone in my body hurts even my hair. I can not get warm and I have to sleep sitting up. Which all of that sucks. But that is my reality now. And explaining how I am feeling emotionally well I have pretty much given up on that. Cause I do not know how I feel .
Living with liver disease is hard to explain to someone. You are tired, you ache, your moody, you are physically sick. But unless I am jaundice you would never know. And to the people that know about it we fight every single day for our lives even if we don’t look sick.
I had someone say I was lazy. I have had people offer advice on things to do to help me. I try not to be rude but at this point all that is heading out the window. I am tired of explaining to people at this point. Some times I just want to be left alone with all of it. But I know that is not the answer. I need people in my life. The day after my shot is the worse and this morning is no exception. I feel miserable and I do not want to take it out on anyone. But I probably will. I guess I will lay down and cuddle up to my dog.
Well I just did my second shot and it was easier than the first time. I think I have accepted what is happening right now. Now it is the waiting game. The jeopardy music is playing in my head. I am also noticing that my bitch level is pretty high today. I think I need to get a color coded chart with the different levels of bitchiness so that people can have a warning system towards my attitude for that particular moment. Kind of like the chart that the U.S. uses for the terrorist alert. I am not sure how it will work cause I am having issues with pre warning people already. Cause it happens so quick these days. They call it “riba rage”. I call it normal but I have noticed the switch to it is malfunctioning.
I am finding that after the shot I am emotional . Not that I am not normally emotional . But now it is way more obvious. I am hoping that the ones that are affected by my bitchiness realize it is not them . It is really me. They do not deserve the brunt of it but they get it I guess . They haven’t called me on it yet. But I am sure some where deep inside they want to say something but they don’t.
I am very blah right now and I am feeling like crud. And I know it only gets worse from here. I am just glad that I have the chance to take it. I am also noticing more hair is coming out. Now I have been bald before and I can rock that shit I just do not like it. I am pretty tired right now and I guess I am going to lay down for a bit.
So tomorrow is starting my second week of treatment. Not as scared as I was last week. Just feeling pretty bad right now. I do not know why but it seems like nights are worse for me. I get up in the morning and I feel okay. But as the day goes on I feel worse. It was like this before treatment but worse now. I swell during the day and by the night time I look several months pregnant . Which by the way I can not get that way. I had a hysterectomy at age 27. So if I get that way it would be a miracle. And so far no one has asked me how far along I am. I am sure I wont be nice about my reply. But none the less if I looked at me and did not know me.. I would probably think I was. But asking it is not recommended .. For personal safety reasons.
I try to keep my sense of humor about the whole thing though. As someone who has liver disease I have a lot to work with. Lets see there is jaundice. What I like to call my glow worn stage. I mean I have to laugh at it really. If you were to put me in a green had and a green night gown .. I could pass for a glow worm. And if it just so happens that I go glow worm near Halloween. Guess who is a glow worm that year? That’s right this girl right here. And I never have to worry about all the taking the makeup off when I leave the party..
I have also learned through my last time going through treatment that my body does tricks. At my age I probably should not be able to do those things. Not yet any way. But I have the ability to pee, poop, and throw up all the same time. No I have not tried these as a party trick. People frown about things like that in public any way. So that one is an in house thing for me. I am not really proud of it but the fact that I can say to some degree that I have that skill. I do not plan on putting it on any job applications or anything.
This disease has given me back my life so to speak. Before I did not see what a wonderful life I have. And now I can laugh at the strange things in my life. And it is okay. I can see that life does not have to be serious all the time. If I can laugh at the things that would probably back in the day make me cry. I feel like I have grown into the life that I have. I know that some people would look at this and be in a rut because of the fact that they are sick. Yes I am sick. But when I got sick I found out I was stronger than I thought I was. Yes I have my good and bad days . And I dread the sick part on some days. But I also know I can keep a positive attitude about things and that is what will bring me through. Even if treatment does not work. I can say I am living to live not living to die. You have heard the saying YOLO. You only live once. Well that’s not true. You live everyday even if you are just existing here on this planet. You are still above ground. So you are living. The fact is we all have choices in life. The one choice you don’t have is dying. And that is one thing you can only do one time. So wouldn’t rather embrace the life you have and live life with no regrets and just find the happiness and peace that you deserve. Just because I am sick does not mean I have to crawl into the fetal position and give up. I am going to find all the beauty in this life I have. Even when I am going through the bad days where I want to give up. I will look for the good and the beauty that surrounds me each and every second of the day!
Growing up we sometimes used the phrase such and such had the cooties. Which was just a made up game for kids to play. Usually towards the person no one liked. And mostly in grade school. Then puberty hit and it kinda fizzled out. You did not hear it as much. But in reality we still carry that phrase in our lives day to day as adults. Nothing has really changed with the way we thought back then but even at times we could be cruel as children . I find that we as adults still play a game of cooties.
For example.. you have a friend and that person tells you that such and such has this disease or that. If it is cancer or something like that you go to the old tried and true response of ” oh my God I am so sorry.. Is there anything I can do to help. But if that same friend came and told you that such and such had AIDS . We respond in a totally different way. The response then is..” Oh my God are you serious? I don’t want her next to me. Therefore another game of cooties. We still look upon things that we don’t understand as we did as children . It is just sad that as adults we still play the cooties game. And it is not just with disease. It is with everything. None of us really truly have never not judged some one for one thing or another. We also look down on the ones that are picked on because they are different than us. When in reality we should be lifting them up and trying to understand what they are going through. There are many diseases in this world that get judged and they have a stigma. Most people look at me and are like but you don’t look sick. When in reality I am fighting for my life every single day. I am not ashamed of my illness and I realized that it does not make me . It is just another part of me. But it does not define who I am.
I share my experience with others freely. I do it because I am not ashamed. I do understand how I got it. And I do get angry when people act like I am a leper . But the reality of my situation is I am not afraid of my disease. You may be but I am not. I live with it and have learned many things about myself and what I want out of my life. I refuse to let the ignorant rent space in my head. I have too much to focus my energies on. I am fighting to live.
So the next time you want to judge someone for something that you do not understand. Just remember the cooties game. You may be grown. But we all play it. There are many forms of it. Before you judge.. Ask the questions you have. You may be surprised at the answers you get.
Leading up to the first day of treatment has been awful. I mean I know what I am doing is supposed to help make me better but having to get sick to feel better .. It doesnt really make sense to me. So they use the term “dragon slayer” when they refer to a person that suffers from Hepatitis C. At first I did not understand why. But now I do. I mean imagine having to go up against the biggest , baddest , scariest creature in the world. And you whole purpose of doing it was to save yourself. Picture any show you have watched that has a dragon in it. Those things are not exactly the sweetest creatures. And they are never pretty or easy going. They are huge,ugly,fire breathing ,deadly creatures. Not something you want to have to go up against. This first week of treatment I have met this horrible beast. And boy is he ugly! And he does not like me very much at all. I have drawn my sword and I am prepared to fight. But he has the upper hand . I am small in comparison and I do not have a lot strength . He has drained me. How I do not know but as strong as I thought I would be. I am learning really I am not. I have tried to be prepared for all of this. But I mean how do you train for a fight when your life is on the line?
The first day was crazy. I stressed myself out . Worrying that I would be a burden. I would be considered lazy. I have imagined every possible conclusion in the world. And it all came down to I still have to do this. If not for anyone but myself. The medicines make me sick. And I know it is all for good reason. I am so tired because my body is fighting this dragon. I am finding it hard to do little things and the reality for people close to me is I am really as sick as the doctors say. I can not hide it any longer. I am always the strong one. And now I have to still be strong but not as much as before.It is hard to explain just what I feel to people who do not have the illness. I would not want any of them to experience what I am going through. I would not wish this on my worst enemy. But if I had to describe what I felt in one word it would have to be…CRAP! I know the visual is not pretty but that is the only word I have.
I know that this treatment compared to the new treatments is not the easy route to take. But to say the least I am use to the hard road. I remember when I detoxed from heroin. That was at the time the hardest thing I had ever done. Now this is in a ball field all of its own. I hear some say I should do this or that. But the reality of the situation is this. My doctor and me sat down and weighed all options available and we came to the conclusion that this was a route I should take. It is getting harder and harder not to write the ” Dear Dr. Dickhead” letter. Trust and believe I have thought about it. But on the flip side. He is trying to save my life and I agreed to the treatment and understood the side effects. So I would have to write myself the same letter. Well minus the Doctor part. I know what I was getting into when I signed up for it. Do I regret it you may ask? Well the simple answer is ..NO. Even though I have been sick since Monday’s first interferon injection and it is Saturday now, I am here for the long haul. Even though the words ” I can not do this anymore” has been said a lot this week. I am not one to give up. I have never let any of the other things get me down. So I am not going to let this. I am going to pull up the big girl panties and I am going to grab my sword and prepare for the long battle I have. This is week one out of 48. So that means 47 more weeks to go. I am fighting for my life here. I refuse to let this disease take me any further than I already am. I am going to make this disease my bitch this year. And with all the support from family and friends I know I can do anything!
It is hard to explain how one feels when they have a serious medical condition. Especially the one I have. I have Hepatitis C. It is a blood born illness. So you cant catch it from touching me or wiping my tears. You can only get it from my blood. I have heard many horror stories about the judgmental people in this world. But I guess you can not get mad them. For they do not know what something is. I know when I was first diagnosed with it I had never heard of it before then. I was scared and angry. Almost to the point where I could not explain how I felt about it. And if you don’t understand you are supposed to ask questions. But doctors mostly talk about your numbers and not what it is. So thank goodness for search engines right? So that is exactly what I did. I looked it up. Because I did not know what it was or even what it meant. Needless to say I learned a lot . For a brief run down .. hepatitis C is a blood born illness that you get from infected blood. Needle sticks and tattoos things like that. When it was first diagnosed in people they didn’t know what it was. Then further and further along they realized it was different from the other forms of Hepatitis. It is still an inflammation of the liver. But unlike the other ones ..this one can kill you.
There are many different genotypes.. forms.. of HCV. I have genotype 1b. It is kinda hard to treat. Basically I have the stubborn one. As of right now I am being treated for my illness. I will treat for 48 weeks with a medicine that is in your bodies right now. Interferon. Where your body produces it my body doesn’t. I have many days where I am exhausted beyond anything I have ever been. I am learning that living with this dragon is the hardest thing I have ever done. I mean I got it from IV drug use. No I have never worked or had blood transfusions . I got it through my decision to use a needle after someone. Yes for a few dollars I could be healthy and not going through all of this. But it was my decision my choice. No one to blame but me. Does it suck? Yes more than you know. But it does not define who I am as a person. I am still me. Just me with HCV. Do I have regrets? Not really because I did not know just how strong I am until I got this. I have been through a lot and I do mean a lot. And yes I have come out on the other side. But this is the first time where I can not do anything about what I have. I can treat it and hope it works. But this will make my second time going through treatment. First time..my liver said nope not today. And I was in the hospital for quite awhile. My liver crapped out on me. Due to the treatment meds. So to tell you I am not scared who be telling you a lie. I am freaking terrified right now. I was given a 26% recovery rate WITH treatment. Without it goes down to 0%.. Now to look at that from another stand point. I have a 26% chance that I could “clear” the virus. That is 26% out of 100%. Numbers pretty much speak for themselves right there. And that is a scary thought. I am having to come to grips with a lot of things in my life. I mean not to many people are faced with something like this. It was just dropped in my lap. Here you go .. You have HEP C. So now I have gotten over the part where I feel sorry for myself. I do not have time for that now. I have to put up a fight that I can say I dread. The meds make you sick. And I do mean sick. Heck the virus itself makes you sick. Now granted you can live with it for many years before you get symptomatic. Some people do not even know they have it. Cause there is not set symptoms. You just go to the doctor and then you get a call that you have it. Then the treatment is so hard on the body that a lot of people with it cant make it through the treatment process. I have been pretty sick this week. And it is only my first week. I prepared for it as best as I could but how do you prepare to be sicker than ever? Well you don’t. So as I go through this journey I am going to share it with everyone. So that if you have or if you love someone who has it you can be better prepared to fight the dragon.