Transparent me

first off I want to start with a disclaimer please do not judge me on my spelling my hands really hurt today and due to that I am using the voice program on my phone and you know my phone doesn’t know how to spell Or check for grammer LOL

 

There’s a few reasons I have decided to be very transparent about my life one is a lot of people have been asking about my in-depth life story and a number of people have been asking what it’s like to live day in and day out with someone with a chronic terminal disease…this is my story

I was born in Monterey California on an army base called Fort Ord. My parents moved to Sparks Nevada and divorced when I was 3.

I was tossed around a little bit between my aunt & uncle and my birth mother and then in the first grade my dad & new wife took me permanently. My mom had visitation with me a few times during the year but when she had me she really had nothing to do with me so eventually those visits became very few in between. It was a very hard life and as I grew up a lot of issues came to the surface and I’d rather not talk about those things as they have nothing to do with health. Later When I was 15 I ran away to go live with my mother in Twin Falls Idaho. I thought this was going to be the best time in my life because that’s all I wanted to do was to be with mom but she unfortunately never changed. My birth mother put me through a lot of heart ache and because of what I saw at home I picked up a lot of bad habits and ended up in some trouble by the age of 16. Without going into too much detail I ended up pregnant and had my precious baby boy when I was 17 by 19 his father attempted to kill me and left me for dead.  He threw me through two windows and then bashed my head in with a curtain rod a telephone and his knee. If you look at my face you’ll see several scars around my eye and on my chin all those are from him. I’m sure you’ve guessed by now I was in a very serious abusive situation at a very young age and I barely made it out alive but what was worse than being beat was that he kidnapped my son and it took me 15 years to find him. A few years later I had my daughter who has been one of the biggest support systems and without her I wouldn’t be who I am now. In 1996 I first fell ill the doctors could not find out what was wrong with me I went through two surgeries and several procedures while the doctor searched for the reason behind my pain. One doctor finally said if you don’t feel better in a month after trying this medicine I will cut you open and I will not so you back up until we find out what’s going on a month later I was under the knife for hours later I woke up on the maternity ward floor. I woke up to the doctor sitting next to me holding my hand she was clearly upset as she told me I’m so sorry I found a tumor on her ovary it was hiding under assist in order to save your life I had to do a full hysterectomy you can know longer have children unfortunately for you there’s no more room on the surgery floorso we have to put you on the maternity floor. I couldn’t believe what I was hearing I can’t have anymore kids,  I had cancer and now I get to listen to screaming babies?!   Six months later 1997, my pain was back but one good thing happened this is what I met Brian. Unfortunately though for me something was definitely still wrong & I found myself back at the same doctor but this time she really didn’t know what was going on and so she sent me to a specialist who just wanted to use a drug that wasn’t even on the market at the time. At the time I was feeling very desperate and so I did this medication and it just made things worse. Brian and I really loved Idaho but I was not  getting better and we had to make a change.

 

So at this time we were still living in Idaho but I thought if we move somewhere else maybe I could get help, so Brian and I moved to Reno Nevada thinking that we would not only have better doctors but also family members who would be able to help us as we found out later,that was not the case. In February of 2000 a liver specialist here in Reno found that my liver was very sick and and he believed that it was causing all my discomfort. He diagnosed me with Nash and said that most people died within the first 13 years after diagnosis. So now here I was a survivor of cancer and now facing a horrible liver disease. From 2000 to 2006 I had 15 surgeries and over 100 different procedures.

Brian and I spent more time in the hospital then we did it home and it eventually led to us getting divorced. It was a very hard time for both of us we moved to Reno hoping that my family   would help us but they wanted no part of helping out. We were left on her own dealing with this. It’s really hard to talk about but we tried everything and when your marriage only consists of going to work and being in the hospital it’s really hard to keep it together. Here he was watching me go through all of the surgeries and procedures and being tortured and in so much pain and there was nothing he could do about it. I mean can you imagine two people that love each other throwing in the towel because we didn’t know what to do and even when we asked for help no one answered. So I moved back to Idaho with my daughter and I did the best that I could to make a life for us but unfortunately my health began to fail. A month after moving back to Idaho I was rushed to the hospital for our internal bleeding and they found seven tumors in my intestines. I was in the hospital for almost a month. In 2007 my liver stopped working and I spent months into different hospitals one in Washington and another in Salt Lake City Utah. While I was in Salt Lake City the doctor told me that I needed an emergency surgery to cut the nerve from my liver to my pancreas and that I only had a 30% chance of survival rate. I cannot tell you what it’s like to explain to my young daughter at the time that I probably wasn’t going to survive the surgery and at the same time I cannot tell you what it’s like to open my eyes and in recovery three hours later. Here are some photos during recovery..

What is so special about these pictures is that I survived something That i was told i would not  survive. But what you cannot see is that I had called my dad the night before the surgery and begged him to please be there because I was afraid of that I was going to die and that my daughter was not gonna have anywhere to go he never came. Thankfully my friend in the photo flew from Reno to Salt Lake to be there just in case I died and she was ready to adopt my daughter that day.

Two weeks after the surgery I found out that the surgery was unsuccessful and that The doctor needed to go back inside and remove the shunt he had put in place of the nerve he had cut. During the surgery he accidentally cut my Vegas nerve permanetly paralyzing my stomach. This is why if you’re ever around me for a long period of time you will not see me eat very much this is because my stomach no longer works.

About two months later I was able to return back to Idaho to my home. I cannot tell you how excited I was to be able to go back to work. When I return back to work A coworker of mine was called for a tour in Iraq. I feel this is important to talk about because I have many friends who are in the Armed Forces but his story is very special and it changed my life. A few months after he left for Iraq he returned home because his platoon had been hit by some form of bomb and he was one of the only ones who had survived. I spoke to him right after this and he told me that they were going to be doing a huge memorial and he did not want to go by himself(his girlfriend broke up with him soon after he was deployed). I told him that i would be his date, I have been to several memorials but this is one that I will never forget below is our photo from that day. No soldier as long as I’m alive will ever go to anything alone, as long as they know me!!!

Soon after this I moved back to Reno Nevada because i missed my friends. I began once again working and I also met Mr. R.

 

One month after meeting Mr. R I once again fell ill. I Was back to internally bleeding and went back into the hospital. The doctors here in Reno just kept blaming my liver disease. But I knew something else was wrong because I had already lived several years with this liver disease and I knew what my symptoms were and these were new. As the years went by I became very weak and fatigued I would pass out. I could no longer do the things that I loved to do. I also did not fill myself I just felt agitated all the time and very frustrated that no one was helping me. Mr. R tried his best he tried to keep me focused on positive things and on the days that I could do things he did things with me but I could see that he was beginning to turn his back on me. I was very nervous that i would again lose the person i loved due to my health BUT he would affirm he was staying by pounding  his chest and say I’m always going to be here for you I’m not like your ex-husband I’m not going to be like your father I will be your constant I’m never going to leave you or give up on us. But I could feel the familiar pull away from him and I am 100% sure I started to pull away too. The happy times and the pictures above soon became pictures like this.

I began to lose color and I could not get out of bed I was feeling completely exhausted I had rashes on my arms, internal bleeding, severe pain and I knew something was wrong. After four years Mr. R told me he could no longer watch me go through this and that he felt like he was dying too. But that he loved me. And with those words he left. So now here it was 2011 and I was on my own trying to find someone a doctor to help me and that’s when I met Keith. Keith was someone who showed me how it feels when someone loves you unconditionally. He is one of the kindest people I have ever met and I’m grateful that God put him on my path even if it was only for a while.

I then moved to California and saw a doctor in Lincoln California. I cried to this doctor and begged him to help me he said I will run every test I can think of until we find out what’s going on with you and that’s exactly what he did. Not even 48 hours later I was diagnosed with multiple organ RA and because the diagnosis that version of it the test was rare, it was ran three more times. I had no idea what this disease was and so I came back to Reno to talk to my old Reno doctor to find out exactly what was going on. He told me there’s no way you had this I’m gonna run the test again so he ran the test and it came positive for the fifth time. He then said you don’t need to worry about your liver disease anymore this will be the disease that kills you we will start chemo meds immediately. Now about a week before all of this I got into contact with Brian again. He knew that I was coming to Reno for a doctor appointment and said when you get here let me take you to dinner(Dec 2012). And we’ve been back together ever since. Please keep us in your prayers God knows our needs!

So it has been two years and three months that I have been doing Weekly  chemo meds and other medications to try to keep me comfortable. Before I got super sick and became more bedridden I was working on my bachelors of criminal justice and doing a lot of charity work for domestic violence and children with alopecia. In fact some of my proudest moment’s are when I was in the Reno Gazette Journal’s Hall of Fame for my charity work & when I was a part of the no hate project.

Recently I have tried to go back to school and finish my degree but I have been too exhausted and in a lot of pain and school has really become very expensive. I Will attempt again this fall if my health allows me too as I am only five classes away from graduating.

To keep my mind off my pain sometimes I enjoy listening to the music of Tyrone Wells who is not only become a friend of mine but is someone that I think of as an angel. Right after I was diagnosed with this horrible chronic disease he made one of my dreams come true, he made it possible to go with him to see him play at the Sunstone Winery in California.

Also he and his wife Elina Wells and their home church made me a beautiful blanket to keep me warm during my med days. They are a very inspiring family and I am so blessed to know them! If you have never seen him on tour, please do this year!!  ‪#‎rollwithittour2015

Another thing I really enjoy spending time with my church family. I really love Sierra view Baptist Church. I was not raised religious in fact I was raised to believe that the Bible was a bunch of bull and that God did not exist. But in August 2007 I had an experience that made me believe and I was baptized later that month. I’m glad that I believe in God because now I know there’s a better place there is a place where there will be no harm no pain no sorrow and where love is unconditional. It’s great to know that I have a father who will never turn his back on me. Our church believes in connecting to God connecting to others and serving all and I love that! Our Pastor Eric has been such an inspiration to me. Without some of the sermons that he has done I don’t think I could’ve ever gotten to the point where I could forgive people who have hurt me desperately like my birth mother. We spent 20 years not talking to each other but last april, I was able to put my differences aside and forgive her, Unfortunately things  did not go as one would have hoped but I feel good that I no longer Carry around that hate & anger.  Even though things did not go well this is a picture that I cherishmomkari2013.JPG

A lot of this has to do with Pastor Eric he helped me realize that there is so much more to life than having so much hate for someone. So that is a big big reason why I love my church & Here are some great photos of my church family

I have been told that once you have multiple organ RA that you don’t have a lot of time to live so I am trying to live day by day some days second by second. This is one of the reasons why last year when I turned 40 I decided to have an awesome birthday party an 80s party

I have learned that you have to have fun in life even when you’re having pain and all you want to do is just hide.

I want to start out by saying that everybody that has this disease is on different meds and they feel different ways but that doesn’t make us any different. We all feel pain burning stabbing swelling fatigue and many other things that come along with this disease. I will now take a moment and explain a week in the life of me. Let’s start with chemo Friday this day absolutely sucks I try to start the day out with getting up and doing something, lately I have been going over to Miss Shannon’s house and then I go home take a nap, get up take my chemo meds and more pain meds. I then watched TV until all the medications finally just knock me out. On Saturdays I do not get out of bed until around 2 or 3 pm. When I do wake up sometimes I have to vomit other times I am soaking wet due to the sweating the drugs make me do. Once I get up sometimes I will shower if I need to other times I will just make it to the couch where I will spend the rest of the day. On Sunday I try to get up around 930 so that I am able to make it to church. After church I try to get some chores done and then I go to evening church. On Mondays my body is completely exhausted and I usually spend the entire day in bed. Tuesdays and Wednesdays I sometimes have a little energy and I may be able to get out and walk with the dog for about an hour to two hours. On Wednesdays I tried to go to our church AWANA program which is a few hours.  After that I must go back to bed. Thursday is almost my better day at least in the morning hours after taking my pain medication. By evening I’m laying back down and on Friday we start the week all over again. Now the only thing I’m not telling you about is every 72 hours I have to change my pain patch every 3 to 5 hours I have other medicines to take it if I’m having a really bad day I have to take steroids and of course on Fridays my chemo medicine that is supposed to help fight my disease and give me more time. If you can just take a second and realize how much poison & drugs  I put in my body daily, you can then maybe have an idea on  how I feel every day. I am in pain 24/7 and each day I must decide how much pain I am in and how much pain meds I should be taking according to what I would like to do that day. Most days however even if I make plans I am not able to make it because it hurts to walk or I am throwing up too much or I am internally bleeding that day. Sometimes it takes everything I have just to go to my doctors appointments. Sometimes it is hard to dress myself because of my hands and my legs and so I must have help. Can you imagine being 40 and having someone help dress you?! Can you imagine being with someone and watching them lay around all the time crying in pain? Can you imagine not being able to do anything for them? Can you imagine cleaning up diarrhea and blood all over the bathroom and shower? Can you rub someone’s painful areas for hours at a time?  Can you imagine listening to them scream just kill me just kill me I can’t do this anymore? Can you just lay around like this all the time. ****Sidenote if you haven’t read about the spoon theory please check it out because it depicts our life very well.

These are the realities we face. This is why I ask people for help sometimes. Just because my skin looks healthy and just because you think I’m pretty doesn’t mean I’m not dying inside it doesn’t mean I’m able to do the things I used to do. It is my cells that are killing me. Remember not all disabilities are visible!

On a positive note I am so blessed that I have been able to do some the things that I absolutely love doing. For example I absolutely love the San Francisco 49ers and I have been able to go to 11 games and I hope to go to at least one more this season Health and money allowing.

I have also been enjoying God’s beautiful world that I definitely took for granted before I became sick. I have been doing a lot of photography and it is been a huge joy!

I’ve also been enjoying going out and shooting and earning my CCW & Learning about knives!  The guys @ Titan Academy are awesome:-)

I love to see and spend time with the family that does choose to be in my life and my friends who I call family! And boy do I miss my friends that live far away but but love when I hear from them, like my very very close friends more like family, the Neitzke’s that I miss terribly! No one knows me better than you guys! I miss you guys so much and think of you often! Rhonda who I wish would just live with me I love you times infinity sister! And Annie who I can’t wait to see this summer! Just to name a few…

Most importantly on most days I try not to let my disease define who I am. I’ve lost a lot of people in my life on this health journey and I’ve lost my hair, my career and I now have have a lot of health issues that are very scary but I always try to remember that God has a bigger  purpose than I have for myself!

It’s like a friend told me and I wrote about it the other day I can either be angry every day or try and be happy either way I have a terminal chronic disease and I’m gonna die. (But aren’t we all? It’s just you may not be  tortured by pain 24/7 or have to take poison weekly but you know a bus can hit anyone of us tomorrow)I hope everybody understands a little bit more about me now and if you have more questions feel free to ask I can go into more detail privately. And I don’t write this to get attention or to how do you feel sorry for me because at the end of the day I know where I’m going and I can’t wait because where I’m going i will no longer feel the pain and the hurt  i feel and I’ll get to see my grandpa! he is probably one of the only ones who ever loved me unconditionally and I miss him every day.

I have survived a lot but  because I have survived, I’ve been an advocate for domestic violence I’ve been able to help other women being abused, I’ve raised money and hair wigs for children with alopecia and I have written several blogs about my terminal disease And  i will continue to do so as long as I’m making a difference. Thank you all who support me every day and for those of you who just turned their back’s for whatever reason,  in the end it’s your loss and I believe there’s a reason why God took you off my journey. God Bless everyone, where ever your journey takes you!! 

**** IF you can please donate to help me finish some goals. http://dt.gofund.me/k3npzw

Thanks for all the love & support!