What a week…

Hi!!!

Weekly Update…

This week has been awful, so bad that I do not want to go over it all. It was full of excruciating pain and a bunch of bullshit from the Dr’s.  I spent time in the hospital, a few hours at work and the rest was spent in bed.

I have NOTHING positive to say about autoimmune disease this week! However I was glad to make it to work tonight! It feels so good to be out of bed and be around others.

AND I AM SUPER EXCITED BECAUSE TOMORROW I GET TO SEE MY FRIEND TYRONE WELLS! If you have never heard of him, please look him up! He is an amazing singer/songwriter!!!

So please pray/send positive thoughts that I am able to go and see him perform.

Due to the lack of energy I have I will answer all questions in next weeks post…thank you for your understanding. If you have a question, you can either DM @openkari or contact me here….

 

 

 

Bitch Session and Final Thoughts….

I get so many messages in regards to trying to keep positive when your whole world is crumbling,so many chronic illness suicides lately… so lets talk about this for a minute…

First off take a breath! If you read my posts, you know that my thoughts, pain, frustration, life etc are very similar if not the same as yours. It is OK what you think, what you feel etc. You are not alone. You might look around and see no one but we are here….I get it, you want it all to STOP. Ya me too! Some days it takes all I have to make it second to second. I pray, I beg God to help me through the day, to get a break, cause I need one so desperately. The constant pain is so over powering and it never seems to end. I don’t sleep much, i don’t eat a lot, I don’t get out much, life just seems so dim. I feel like I am being held under the water, never coming up for air.

The other day i was looking through some art work and I found this amazing photo that I think speaks for itself. Some will only see the negative in this picture, but to me i see truth, i see pain, i see hope….

Just because we might think something does NOT mean we will act on it and that is what I see in this photo. Life is a constant battle, unfortunately for us, we are battling our own bodies. This life IS fucking hard! We must always be shattering the negative that slips in our mind. Truth is….. Suicide is real, depression is real especially with chronic illness. I know that the chronic illness is NOT the only ones who have depression or who commit suicide but for the purpose of this post, chronic illness folks are the group,  I am talking about. We must never give up. We all have a purpose even when we have NO idea what it is. Fighting chronic illness can be a very lonely battle because no one can see the battle but us. I find this to be hard because trying to explain to others how I feel when to them I look OK, sucks! Some people just can’t comprehend that our cells are killing us. I get it, what you can’t see is hard to believe but trust us, what you can’t see we definitely feel.   Please talk about how you feel no matter what those feelings are. Stay Strong and Reach out if you need too…..I am here and do not worry if I have already touched on a subject..lets chat, ask questions! Together we can push each other through the shit. We did not ask for this life….but I wouldn’t notice the stars in the sky with out it. This disease that is killing me has reminded me to live…..I take NOTHING for granted, not anymore.

While screaming through the pain……do not forget to Laugh, take time to look at the stars, LIVE……..Because Life is not stopping because we are suffering…..XOXO

 Thank You Belle…I really needed these extra spoons

 

P.S  I get an overwhelming amount of emails in regards to relationship issues and chronic illness, So I am going to do a BIG post on this topic. If you have questions or want to add your input please message me! It is nice to get others opinions…..Thanks 😉 Maybe we will do a LIVE conversation too!

 

Roses

If you truly know me, you know i do not like Roses. I think they are ugly  expensive flowers that die in a blink of an eye. But today I find Roses as a perfect title to explain how i feel in this moment.

I despise almost everything at this very moment. I feel ugly and i am filled with so much despair.  I feel like a bubble has swolled me whole and i can’t find the needle to pop it so i can breathe. I so desperately want out! 

The bubble represents everyone/everything in my life. I live mostly the way others want me to live.  The Dr’s tell me what to eat, what meds to take , what i can and cant do. In other areas of my life people set goals for me then do everything in their power to make sure i fail. They stand in my way or give my goals to others, others who are NOT sick. In personal relationships this includes friends and family…i do what makes them happy as much as I can even if it makes life harder for me.  I feel like what I want rarely  matters. I feel like I am not worth anyone taking risks with me, like they “settle” because they know eventually i will be dead. 

I Am not writing all this to get sympathy, or make anyone feel sorry for me, i am writing this to get it OUT of my body & out of my mind.  I have enough poison in it. If you know me or follow my posts, you know i try my best to be positive but everyone has a breaking point. I am having one of those now. I have hit a wall. With all this new medical bullshit going on with me and no real answers i AM fucking scared and frustrated. And I am truly alone in it. I am the ONE going through it. 


This Daudet quote is DEAD on! I could not say it any better! 

I know many of you mean well by saying things like, this to shall pass, it will get better, i am thinking about you etc But the truth  is you are just saying these things because you have no idea what to say so you choose these words in hopes it will comfort me in some way. (I also know there is a time and place for these sayings such as you have or are in a similiar situation and you are sincere in saying what you say, then by all means say it)No offense to anyone but i would rather hear… i will be here if you need me AND then REALLY be there!!!   Because if i had as much help as people offer me I wouldn’t feel so emotionally alone. I know everyone has a life to live but I am here to tell you to think before you speak. If you really want to help great  if not zip it. 


For those of you who are on the “fence” with me meaning you like me in your life but don’t see a future with me…this can be personal or professional….figure your shit out before i make the decision for YOU! I am done with what you say then do the opposite! My time IS fucking valuable….as is yours! 


Being around me or with me for pitty or you feel sorry for me is bullshit & I deserve much  more. Do not think for one minute that there are no other people in the world that would take my sick ass on. Outside of my health i have a lot to offer. I am a good person and i love my friends and family with everything i have… i give 100 if you give 100. Try asking what I want in life and LISTEN. I want everyone to be happy. It is called compromise, try it sometime. 

For  the people sending me messages about how beautiful i am and how my health will get better… FUCK you.. are you serious? What the fuck  does my looks have anything to do with someone finding a cure for my disease? If i understand you correctly… i should be healthy because of my looks? (Yes i am a total babe puking and shitting my guts out..picture below is for you, this is sick me, i am not just the renogunsgirl you like to drool over) Like only ugly people should get sick??? Sounds like you got your diploma out of a cracker jack box….



To sum this week up… i am extremely frustrated with the way everyone is dealing with my health… i would love it if Dr’s took compassion classes and really took time to help instead of just passing me on to the next Dr who will also treat me like a number. (Side note, pleas do not try and school me on how Dr’s really do care and how i dont see their side blah blah blah.. i have been doing this shit for a long time, i dont judge blindly and when i do come across an amazing Dr i give them credit) I want friends/family/professional to be more compassionate. Really mean what you say or just be quiet. Like i said get off the fence. Tell it like it is I can take it. I would rather be hurt with the truth than be continuously drug through the coals. Do not for one second think I don’t know what you say or do just because I am not always around. I have eyes and ears everywhere. People talk, it is what we do. 

I know i can talk and write till i am BLUE in the face and some people will still  never understand but i hope and pray that we can all come to some understanding. Please take what i say  to heart, it is not meant to be rude it is just the truth as I SEE it. Battling several non curable diseases and listening to the Dr’s explain how one is progressing and attacking my organs is so tough for me to hear. And to add to that now i am being poisoned by either one of my poison meds or something else my body is destroying. I just want to crawl out of my own body and run far away where my body will never find me. I ask God all the time why i am still here. I sometimes can’t see past my health, the pain and frustration of wasting days in the bathroom or in bed really affects the way i think. I want to live but my body wants to die. So every minute it is a struggle. And no matter what my struggles are,  life still goes on, i have to work when i can to pay my bills, i have to take care of my fur kids etc. Life doesn’t stop because I am sick. I get zero breaks. Don’t be upset with me or do waste time being mad at how i feel.. it is your life but truth is…I pray God eventually hands me the needle…..this isn’t beautiful anymore….

My March Madness✨

Only on day 2 of March and i already have so much to share!  

First off the biggest news is, i unfortunately was forced back onto chemo meds. Within 2 weeks off treatment My disease not only took over but it skyrocketed. I was suffering and seeing a whole new bunch of RA issues.

Although i am sad and feeling defeated, i have to do what is best for me. To be honest,  I had a rude awakening. I honestly thought i could fight this  terminal disease on my own but i was wrong. I now understand that i have to stay on chemo meds until i die, whether i like it or not. This is a very touchy subject so i appreciate your compassion and kindness during this time. 

Secondly due to this “rude awakening” i have been forced to take a long hard look at what’s important. I really realized just how sick i am.  I believe i am finally going through the  5 stages of loss & grief. I was told a while back that eventually i would go through the stages as most people diagnosed with chronic/terminal diseases do. It sounds kinda crazy but i believe i just went through denial. Not denial that i am sick but just how sick i am. 

Anyways this has been a hard week.  Extra bad blood tests, worse than when i was first diagnosed. Something I try to remind myself of is I was once told that I can either be happy about my terminal chronic illness or I could be angry at it either way I was going to be living with it. And although I know this is very true I still find myself so angry asking myself why me you know all those crazy things people ask themselves but I know there’s a purpose to all of this I know that God has a purpose for me I just get really frustrated. Sometimes I just want to scream because I’m in so much pain and I’m so tired and all I want to do is to go out with some friends and have coffee or anything really. And then I get in this place where I am angry about my health and I’m reminded about everything else I’ve had to go through because of my health so you kind of spiral you find yourself spiraling down this hole of negativity and it really sucks and no one wants to talk to you about it because they don’t know what to say and you just kind of  get stuck until you get yourself unstuck. Unfortunately a lot of people never get unstuck and that’s why suicide is so high with this illness and that angers  me too. I wish we had more help and more understanding of this disease of all diseases. I wish that doctors were more compassionate and if they listened more to us and not put us in a box like we all are the same sizes and we all fit in the same box because that’s not the case even if we have the same illness that doesn’t mean we all should be on the same treatments because we all have different bodies. And outside of doctors then there’s the emotional part of the people around you and how you’re treated. You know like your friends your family or the lack there of. Sometimes when I get in my negative downward spiral I think about all the people who have been in my life and promise to be there through all of this and who later turn their back when they thought it was too hard for them; boy I wish I could turn my back on my health. My favorite personal story that I’ll tell you is about Mr. Rossi who used to promise me he would always be by my side,  he would promise me so much that he would even pound on his chest like a gorilla and say I’m always going to be here for you I’m always going to be here for you, i guess 4 years was forever in his book. He left and ripped our family a part, like it was nothing.  And then i have blood family who pretends i dont exist. I wonder if they think by turning their backs on me, i will not be sick, or is it they just dont want the hassle or my favorite…. ” i just cant watch you be sick, its to hard.”     

Anyways i just would like people to mean what they say and do what they say they will do. If something is too hard then SAY dont make promises YOU cant keep. I am a person and i do have feelings.  Its hard to trust people with our delicate lives. And i am not going to sugarcoat it when you were sick your life becomes very hard and those around you need to be ready for all the changes too. 

Also if you are living with a chronic disease and you just need someone to talk to you about the things that I have just spoken up about please feel free to email me I’m not afraid to tell you my story nor am I afraid to tell you how to deal with it please don’t commit suicide please don’t get wrapped up in your negativity there are people like me who would love to help you get through those black negative days. I mean I’ve said it before and I’ll say it again I have negative days (i just gave one of my personal painful experiences)too, because dealing with dying and pain and discomfort and fatigued affects everything in your life and you cannot hide in your room or in your house you have to reach out to someone and I don’t even care who that person is a give me a family friend a stranger I don’t care who. Mr. Rossi rocked my world and I went through a lot of painful treatments and Tests and finally then the awful terminal diagnosis and if I wouldn’t of met who I met in California I don’t know if I would’ve made it through but I did. It’s really scary to reach out to someone but you have to do it because committing suicide is not the answer I believe we all have a purpose.

Ok so now on to the rest of March Madness FUN stuff, i get to see my favorite singer songwriter and friend , Tyrone Wells in a few weeks. I am super excited, he really has been a HUGE blessing in my life and i can’t thank him enough for the things he has done for me. We also have another knife class @ Titan Academy. I have a few photo opportunities. I am really enjoying the art of photography! It gets me out & about when my health allows it! It reminds me to live and even through all the fear of dying & pain its a beautiful life!!!