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!

 

Don’t Expect To See A Change, If You Don’t Make One!

Hi!! I know this post has been one of the most anticipated by many of you..HOWEVER I want to cover a few things before I tell you all the BIG news…….

Health wise my body has been in SO MUCH pain!!!!!!! 24/7 pain when you have a gosh dang-it pain pump is BULLSHIT! AARRG This whole situation has been a complete mess and I feel so out of control. I am not sleeping, I am eating during odd hours and I am just over IT.

So last week I took all these blood tests and we should have all the results in the next 48 hours but one came back the same day. This particular test showed my cell death has doubled in the last month. So as much as I want control over my health, at the very moment I need the chemo and biologic meds BUT I am not giving up on looking for alternative stuff. I am DONE watching my hair fall to the floor, I am DONE bleeding from what seems like everywhere. I am DONE with how these chemical meds make me feel.  My asshole disease DOES enough to me! My specialist says the chemo and biologic mix slows the disease progress so if I continue not to do treatment, the disease will be very progressive…..Like i said before one test is already back and the other 14 will be back within the next 48 hours. With the first test already bad, I am so afraid of what the other ones will show. I feel so selfish for stopping the meds BUT I needed the break…….It has been 5 FUCKING years of that shit. What if this is the very reason my pain has tripled? Did I do this to myself? Is my body punishing me? Please keep me in your prayers this is going to be a rough next few days. And even though i restarted the poison meds a few days ago, I might have already done some serious damage that may require some other fucked up meds…….But on a positive note, I am looked cute on test day..

. And with me, when one vein says enough is enough….they hit the other side……Share and share alike 😉

If you follow me, you know this year has been pretty rough on me, It seems like every time I turn around something else is in my way.

Truth is, I never thought my world  would turn from this  to this 

Yes I am smiling in both pictures BUT ONE has no idea of what is about to happen, ONE does not know that in a matter of weeks, she will be giving up on her Bachelors in Criminal Justice, giving up an amazing career, watch people shut the front door  and never come back, ONE will pass on some amazing opportunities,and live a life full of poison meds, disabilities and severe pain. One will be forced to trade in her energy and friends for severe fatigue and Dr’s. The other ONE is smiling because even though my hair is falling out due to meds, my organs are struggling due to disease, I AM STILL A FIGHTER.  Yes most days I want to JUMP off a cliff, BUT I have learned to live for the Good days, the days I can get out of bed, feel the disease and pain rip through my body and still Smile. 

With ALL that said I am so grateful for those of you who let me be silly, who push me past the negative……..

Some of you live far away now But keep in close touch and I love you all for that! I miss and love you guys so much! The rest of you fools get to deal with me a few times a week….SUCKERS

P.S. if you don’t see yourself above stop being so SENSITIVE………….. HA!

Sabrina girl we have to get together eventually, can you imagine the selfies? HA HA……thank you so much girl for coming into my life. I love that we share so much even the bad parts..the health stuff…..shit If we were healthy we wouldn’t even know about each other….. #shieldmaidens

Later this week, I will be sharing with you all a taste of Sabrina’s health journey..so be sure to read it under the Tab titled  Stories that inspire you…….

Take time to be silly…in the end NOTHING we own is going with us SO MAKE MEMORIES……

 

Outside of the pain, I have been to the Dr 3 times in the last week…….I think they call that dating?!

This one is for you folks who say…….”Hang in there Kari.”

Unless YOU have or ARE going through what us “spoonies” go through….please think before you speak. I know it is hard to find things to say to those of us who are struggling everyday but I personally would rather hear nothing then, “you look good today, you must feel ok,” “the pain should be better tomorrow,” ” tomorrow is a new day,” “you can do it,” and all of course my all time favorite…..”you look so good, how can you be so sick.”       I had no idea you could SEE INSIDE ME……… I am Impressed!!

 

BUT IF YOU REALLY COULD SEE INSIDE, THIS IS WHAT YOU WOULD SEE….

I know many of you mean well but this is ONE thing we all struggle with. Truth is many of us will NEVER be healthy again, this is our NEW NORMAL and it sucks, if you could just imagine having the FLU forever along with some Broken bones….then MAYBE just MAYBE you can imagine what our life is like.

Since my last post, I have received many emails in regards to being left, or being treated like crap by those who say they love you. If you remember nothing else…remember this…

Everybody has bad days, even those who do not share our health issues, so allow for those days but if it goes beyond that and into ABUSE….

I think one of the hardest things i am STILL learning is this…

Even when I am weak and in more pain than i want to explain, I still push myself to make others happy when they could careless what I do or don’t do. It is who I AM. I am the type of person who gives 100% in ANY relationship even on my worst days. This is one of the things that I will be changing, because I am wasting so much energy on people who don’t give a shit.  Sometimes through all the health stuff, I forget my worth. I  get lost in all the pain and suffering. I forget I am a person, a GOOD person. None of us are perfect BUT this doesn’t mean we HAVE to put up with shit. Our health is ENOUGH.  My goal is to make SURE my health is the only NEGATIVE thing in MY LIFE. *Side note*** for those of you going through a rough breakup/friendship..whatever, I am here to listen. You are NOT alone! TAKE care OF YOU!!!!

 

 

 

ALRIGHT ALRIGHT…….You have all been patient enough..

 

Where I am now, I am NOT growing as a person. My Doctors can no longer do anything BUT keep me comfortable. Everyday I do the same thing over and over again. This is NOT how I want to live. So We are moving. We are leaving Nevada. I need to see better/different Doctors. We are currently looking for different treatments, I really don’t have time to waste. No else advocates for me BUT ME. I do not need to get into detail but every aspect of my life is at a STANDSTILL. Everywhere I look, I am the sick girl, I will never get the opportunities that others are given. I will never be given the opportunity to advance because of my “disabilities.” Every time I get involved in something outside of my health, I hit road bump after road bump. I am DONE. I am with DONE with some people here in Reno, I am done with Doctors who just want to cut and fill my body with pills. I will no longer settle. I want to go where no one knows me. I want to be appreciated. I want to spread my wings before they are fully clipped. There is nothing in Nevada for us. You would think living here for half my life I would have some ties but I found out very quickly when I got sick, just how fake people can be and just how bad the Doctor/hospital care is.  Sure I will miss some of you who I have a special bond with but life goes on……It takes 2 keep a friendship……i will see just how many of you keep in touch….and YES i know phones work both ways….I know how to use mine, Do you?

I will keep you all posted on the move date, please do not ask where we are going, it is not important right now, we are not moving anywhere to be close to any one thing or anyone..We are doing this for US…….That is all I have to say on the subject. 

 

The other news is…a few months back 2 publishers approached me with book offers(apparently some people like what I have to say…… ha!)The choice of who to go with was easy!  I have decided to go with a publishing company that stands for FAMILY, supports our country and understands some of my struggles. I do not want to say much at the moment except that I am excited to do this and proud to be a part of this amazing journey.  This book will be time consuming, therapeutic(i am sure), But so worth it. And of course some of you can have a signed copy….. LOL

When i first began writing, i did it to get my health demons out, I had no idea how much my life, my words, my struggles would end up helping so many others like myself. I have to admit most days the future seems bleak, i can barely see the light at the end of the tunnel and I am scared and unsure where my health journey is taking me BUT it is silver linings like this that give me HOPE…and sometimes that is all we need to get us through each second of the day…..

Thank you for your continued support….Much love to all of you <3

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Your worth fighting for

 

I hope that everybody has had a great past few weeks. I have been busy being sick fighting this damn disease and have had very little time to keep everyone updated…..BUT I have a few minutes to spare before I go back to bed….and I guess I will spend them with YOU….FEEL LUCKY

Here is where we left off…

 

Tuesday, November 24 Well lets just say I spent the day in bed….it was chemo day.  Although I did crawl out of bed long enough to get my Christmas tree out and put together.  Damn did that wear me OUT.  This was a reminder of just how little energy I have most days.

Wednesday the 25th I woke with severe spine pain!!! I  HATE how chemo drugs mixed with my disease attack my spine. AARG  THIS was a stay in bed all day kind of day!

Thursday the 26th was thanksgiving…. I managed to eat some turkey , potatoes and stuffing. I did not let my belly be the boss today ……however this is how I felt later in the day.. Internal bleeding is zero fun ;-(

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Friday the 27th I stayed in bed wishing I could go shopping or at least go out and have some coffee…

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Saturday I woke up and I couldn’t move my hands for hours OH HOW I LOVE MY DISEASE!! But I was super grateful my girlfriend made me a Christmas tree to go with my Christmas décor. I love how perfect it is for me!! Thanks Blondie

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Sunday I worked for a few hours and even visited with Santa…He better bring me some gifts…I only ask for a warm plug in blanket and some carhartt socks. Part of my disease does not allow my blood to circulate so I freeze all year long. These items would make my life MUCH better. Side NOTE…I used to ask for jewelry, cars and clothes and now its stuff to help me get through my health SHIT….Funny how things change.

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Monday the 30th I worked…I love where I work, I know I say it all the time BUT everyone I work with is so Awesome and they don’t make me feel sick.  Sundays and Mondays really FORCE me to get away from my bed ridden disease. A BIG hug to all I work with, you all are super special 😉

I started DECEMBER off with a BANG and I did my chemo drugs and it was just a crappy day as USUAL. WOOHOO BAH HUMBUG

 

Wednesday, December 2  I was very sick in fact I was in bed until 7 PM vomiting and I HAD FLU Like  feelings but I had to drive to Sacramento at 8pm so I could pick my BFF up at the airport. Super excited to see RHONDA!!

December 3 I went in for my second treatment and this time Brian tagged along so he could learn how to do them so I could later on do them at home. I feel like such a puss when I allow tears to fall down my cheek as they push the drugs into my system.  I just hate all these chemicals in my body. I just do NOT know which is worse the drugs or just letting the disease KILL me. Sometimes I just want to let the disease take over because I am suffering anyways so what is the fucking point?! Just another one of these damn days….

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Friday Dec 4th,  I am very sick and I was in bed until 7 PM again which really pissed my off because my BFF flew from LA NOT to watch to watch me suffer and or sleep all day. BUT this is MY fucking life and this is what I do every week!!!!  I just feel so guilty sometimes that my body doesn’t care who is visiting or who wants to do something.

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Saturday Dec 5th is a very important day to Brian and I and we had plans but so DID my asshole disease.  He however was able to take me and Rhonda to dinner and I was able to eat half of a Boca burger . YA I got to eat!!!!!! Later in the evening Rhonda and i made each other wreaths! they turned out great and we made another memory. In the end that is what life is all about! I can’t tell you how happy i am having her here visiting. I am just sad i was in bed or in the bathroom more than i was with her.  Rhonda if my disease takes me before we see each other again know i love you times INFINITI. No one has ever stuck around like you. She never said, i was to sick to be around or that she didn’t want to watch me die like other friends did. You are what a real friend IS. Thank YOU

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December 6th I made it work or rather crawled to work….(although I bet none of you knew how I sick I felt) I can HIDE IT WELL. 😉 I then drove back to Sacramento to drop Rhonda off back at the airport. Then very carefully drop back over icy Donner. It took me 2 hours longer to get home.  When you start with ZERO energy and then have to do all I did….lets just say it SUCKED.  If I could just find a way  to get rid of a QUARTER of this pain, I would…

December 7th I made it to work AGAIN. YA ME!!!! I am so grateful for the customers who always put a smile on my face every Monday.  They have no idea how much I am suffering inside and to hear the compliments they tell me really make my day. Also Colin the 49er Elf keeps me busy and I heard he keeps the crew on their toes during the days I don’t work. I am very happy Colin found a new job…. HA! This coming weekend I will be bringing Colin’s girlfriend by the Gun Range for a conjugal visit. She misses him. 😉  See what you all miss at the Range? You should make time to come down and see us all! I mean it is the only place where Colin the elf will model an UZI for you!!

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December 8th (yesterday) I woke up and could not feel my legs and left arm. I guess I am now having a reaction to the chemo and other drug mixing! SHOCKING!!! Lol   So because of this I could not do my chemo meds last night because I was miserable. Today was also a day where i just stood in the shower crying as more of my hair fell to the floor. I never thought my hair had to so much pull on my life. Sometimes i just feel so ugly and i am tired of wearing bandannas. I just want my old life BACK…or parts of it.

 

December 9th is TODAY bitches…..I woke up at 11, forced myself to get up and take the DOG to the park and enjoyed the fresh air. Picked up my meds and came back home to go back to bed. And well now I am writing to all of you because some of you are impatient…HEEHEE  I am just teasing….I love how many followers I have now and how many of you write to talk to me about your crap and or happy experiences(do we have many?! ;-)) with your disease.  My online support group is how i get through most days.

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I really hope everyone is enjoying their month of December so far. Before I got my death sentence/millionth diagnosis, Christmas was my favorite time of the year. However now it makes me a little sad, I have no energy to do as much décor as I would like, or to go shopping(and since being on disability and living with a chronic painful disease I can’t work but 2 days now so $$$ is low) or to travel anywhere. Sometimes this month just reminds me just how unlucky I am.  I am too exhausted to do anything, this is the month 3 years ago I started weekly chemo drugs. This is the month I just sit and stare at my tree praying that magically it will decorate itself because I am so exhausted after just putting it together and then I am also reminded that I will have to take it all apart in a few weeks….UGGG

Anyways being negative or being stuck in my own head doesn’t help although I know writing and sharing this helps others in my same situation. So i will just keep at it, one day at a time…fuck that…one second at a time because that is really what I AM DOING….and i think most days i do it pretty well…

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Ok so here is where I bitch or INFORM you all on something , in OTHER words this is my opinion, take it or leave it i don’t care ….

So today I open carried..  (yes ken and Greg, I can hear your comments and evil stares..) to the store to pick up my meds. Anyways the cashier asked how she can carry a gun. I then asked her if she has ever trained or anything and she said NO and that she just want to own one.****** This is what I told her …..i want to be a ballerina so I will just go and buy some ballerina shoes and a tutu and then magically I will dance like a ballerina. She quickly replied with, “you can’t just be a ballerina like that, you need training.” As I walked off I said, EXACTLY…..go check out Reno Guns 😉  I heard her say your right thanks, I will check it out. 😉     With that said, I think it is SUPER important for anyone to train and practice practice practice. Being a gun owner is like anything else, you need to keep up your skills. Women( I say women because I have more women who quietly send me messages because they are nervous and or scared to be around guns) do NOT be afraid to come in and train. Don’t be afraid to be around guns, remember guns DO NOT OPERATE BY THEMSELVES. Talk to me about anything and if I don’t know the answer I work with some amazing guys that will have an answer. At Reno Guns we have some great instructors and like a customer said last week to me….they are cute to look at too.  😉

I also want to take a second to address some other readers/bloggers recent  blogs about how how can some people be so sick and look so good. Many of us who look “GOOD” on the outside understand this issue. In many of our cases, it is our INSIDES that are sick which YOU CANT SEE. This is why they call it “invisible disease.”  Or when someone asks what your disease is and then they want to tell you what to do for it, when they know ZERO about it. In the end we know our fight, and we do NOT need to PROVE to anyone anything and we certainly do not need to listen to others rude comments about what they WOULD do if they had our disease. —-This is one of  my favorite—-  We have a hard enough time with loved ones, doctors etc, we don’t need shit from bystanders. Love yourself always even if it IS just second to second

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