Tag Archives: loved ones

Big Girl Panties

This picture above explains how I have been feeling since the beginning of 2018. I feel like the New Year just slammed into me with ZERO warning. Last night I felt overwhelmed with everything….

My health just seems to be getting worse and I feel NO ONE is doing shit about it. Dr’s do not want to change the meds, all they want to do is up them.  I see my pain pump Doctor in 2 weeks and I am praying that we can get through to him that this just is not working for me. I am so tired of the pain….it keeps me up at night, it keeps me in bed during the day, it likes to be in the hospital, it loves to torture me and I am SO OVER IT.  My hair is still falling out, the skin on my face is peeling off and i just miss feeling beautiful.

I know that looks are not what makes someone “beautiful,” however we live in a society where being “beautiful” is pushed on women 24/7. We are told to be thinner, have long hair, wear gobs of makeup etc.  I have never been the type of woman who listened to what “others” thought I should look like however I miss looking how I want. I miss being able to go to the gym or go dancing to stay in shape, I miss having what hair style I WANT, I miss being able to wear very little makeup and feeling like  100 bucks. I miss ME. Somewhere along this health journey I lost me, I had to change myself due to the side effects of my disease and or medications.

UPDATE……This post has taken longer than I previously thought due to these shit meds!  Last Wednesday the Dr thought it would be a good idea to add another dose to the chemo and it took me out for 3 days. I spent many hours in the bathroom and in bed, that stuff makes me so sick and when they add to it, they make it worse. This completely sucks!

I am so tired of puking and feeling that dizzy shitty feeling. This higher dose of chemo meds had better do something amazing because the suffering is bullshit! If this is what is to come every gosh dang week, then I quit! 

 

These diseases of mine have been kicking my ass but the meds I swear can be 100% worse.  It really takes everything I have to keep going and if this is really how my weeks are going to be now…..I do not know if I can keep going like this….

 

 

 

 

 

I have also been going through some emotional shit outside my health. Lately a few people I thought I could count on ended up being like most other people who run the other way. I hate that those of us with Chronic/terminal illness have to get used to people coming and going. Outside of all the physical pain of my diseases, I hate this part the most. I hate trusting people, I hate giving people chances only to watch them turn their backs.

 

 

So with all that SAID, I am going to do a few things FOR ME…

  1. I am cutting ALL ties with people who do nothing but drag me down. Chemo/biologic mix will be the ONLY toxic shit in my life.
  2. I am going to search the COUNTRY for better Doctors. I do not know if they exist BUT if they do, I will find them!
  3. I am going to love me FIRST always. I recently realized i support others when I get very little back. I refuse to be put on hold while I wait on others. What I mean by this is when I feel unloved, I will go be around people who love me, when I feel alone and scared of what my future holds, I will  be around people who really do care and have a shoulder I can cry on.  My Time IS valuable!
  4. I will look for happiness within Me, not outside of me. I am going to try(body allowing) to do one thing for ME every week.  I definitely lost myself in this health crap. I need to find a way to keep picking myself up even when all I want to do sometimes is die.

5. Wear MORE lipstick…I AM a girl after all

 

I think for tonight that is all I got. Like I said the last 3 days have been rough, i have kept zero food down, until this morning, the last time I got UP and OUT of the house was today. And unfortunately for me(higher dose #2) chemo/biologic mix is AGAIN tomorrow….So if you pray, say one for me please!! This has been a long 5 years with this diagnosis and although I am grateful to that ONE doctor who FINALLY found out what was wrong with me, my life has been forever changed. Side effects of these diseases will kill me and it  will be before my time. I am OK with that now but it is this slow suffering that I will never be OK with.  It is ME time now…so until next week……XOXO Keep up the fight spoonies 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It is What it IS

Happy July Everyone!!!

Alright lets do this….

HEALTH UPDATES:

Tomorrow will be 3 weeks off of chemo and biologic meds and so far I am really miserable. BUT this is expected as now my autoimmune diseases are allowed to do what they want. 

 It is what it is…..

Last week my knees were very swollen and all I wanted to do was cut them off. I tried everything and when NOTHING helped, i went to see my Dr. My Dr by accident turned up my spine pain pump a little too high and it made me very sick….thankfully the next day he was able to turn it back down. All Dr’s are against my medical choices so please continue to keep my secret…LOL

I am going to DIE on my terms which may change day my day…..But I am not going down with out a fight! I will keep you all posted.

 Sometimes you just have to push through the pain…

Next week I do my first set of blood tests off of my chemo/biologic meds. I am very scared to see the results but maybe my body will surprise me….

Also starting tomorrow(Monday July 3rd) i will no longer eat anything white like starches and such(although I will have ONE cheat day a month.)This last surgery and meds  has really kicked my ass…and this excess weight gain has got to hit the road!!! So if you have any good veggie recipes toss em my way!

 

MY BITCH SESSION:

I have had a lot to deal with this past few weeks and for ME, it is best to get it off my chest…Lately I find myself mad because even though I wan my health to be the worst thing in my life, I find other life issues rearing their  ugly head where it does NOT belong..ARRG  For those that do not know me personally, I am a very A personality so I like things my way, done RIGHT the first time, very few questions asked. With that said you can imagine how I might feel when I can’t control things like my health and then other “life” issues start to arise! 

I feel so out of control when my pain will not stop, I can’t sleep and It hurts to walk. I just want to escape, so I head out to my car that needs new tires. Then i see that I need gas however my bank account says ZERO. It is then I am once again reminded of another thing my health has taken away…why did I bother to spend all that time on  my Criminal Justice degree? Why does the government put such TIGHT guidelines on people who are on disability? Like we did it to ourselves? Just last month i was kicked off the Medicaid program because I made an extra FUCKING $48 dollars. Seriously????? It is such bullshit. I feel like they want those of us on disability to just sit at home ALL THE TIME feeling sorry for ourselves waiting to die. Well that IS NOT me, I want to be OUT every day MY BODY ALLOWS ME TOO!!!

And then I am a little OCD..i think it comes with the A personality…HA! So I PUSH myself even when I SHOULD not in every aspect of my life. I spend spoons doing stuff and then I watch as people take little to NO notice of what I do. Do you know how much it takes to  just shower and dress myself most days?

Autoimmune diseases love giving us severe fatigue along with that FUN pain. Fatigue is so much more than just being tired. Imagine the last time you had the flu….and then quadruple that feeling and that is what many of us experience EVERY day. Please have compassion or at the very least respect the shit we DO when we can! We really are doing our best.

 

So not to hit on this subject again BUT i get so many emails on this TOPIC….Why do loved ones leave us?  

As i have said before I can only really talk about what I have experienced and just so you know, as long as you guys keep asking about it, i will talk about it. I am not afraid or ashamed of what others will think or do think, i could fucking care less. Does it hurt sure but that will eventually go away…and hopefully the RIGHT people will come into our lives…

This meme is so TRUE, you need to forgive yourself. And remember it is never a mistake UNLESS you didn’t learn from it. 😉

Several of you asked if i could sum up how i felt in the moment my health was used against me and how I felt as someone who was supposed to love me walked out.  To be honest he made me feel like I was not worthy of being loved by others. 

And being the A personality I am, I let this fester in my mind and heart, I ALMOST let it change the person I am. Because outside of being a very strong headed person I am so loving, I give a million % of myself, because I know first hand what It is like to be left behind so why would I want someone else to feel that way? I wouldn’t.  Like many of you, I was left over something I could not change, i couldn’t fix my health, I couldn’t fix that I was always in bed. At the time I could not find a way out of my frustration, I couldn’t just FIX my fucking health and so you left me behind. For the longest time I drove myself crazy because I could NOT for the life of me see how someone could leave someone sick because I myself would NEVER walk away from my sick loved one. But I guess LOVE means something different to everyone. Which brings me to another group of people, “family.” Even people who share our blood or family ties can be just as ruthless and hurtful. Many “spoonies” will agree that anyone who can’t “deal” with our health issues will walk when given the chance. So if BLOOD family can walk away then should we be surprised when others do too?

The important thing to remember is IT IS THEIR LOSS. I now look back and see all the things that people have missed out because they chose to leave. So many amazing memories I have made with other people because they chose to love me no matter what my health is like. They chose  NOT to say what you said to me… ” I can’t watch you die,” “your health is making me sick too,” “i love you BUT, this is just too much.”  Or my other favorite things i hear from others(ONCE a year), “we really care about you,” “thinking of you kari,”….Ya once a year I cross your mind…

Heads UP…………………………………..THIS IS NOT HOW YOU TREAT SOMEONE YOU SUPPOSEDLY YOU CARE ABOUT!!!!!!!!!!!!!!!!!! When you care about someone, you keep IN TOUCH. It really isn’t that hard….Just saying 😉 AND if you have not noticed..i treat others as they treat ME….

 

Then there are others we keep in our lives who keep us at arms length and never really truly love us, they just keep us around maybe because they don’t want to be like others and leave us behind or maybe we are just good ENOUGH until someone else comes along. They “hide” us for a lack of a better word. Meaning they seem to care when we are around but the minute we are out of sight we are out of their mind. I see this a lot. They too take us for granted. Like the sick do not deserve to be loved. Like we will never be good enough.It is hard for all involved BUT the difference is,  we can’t just UP and leave, we are stuck.Do you feel lucky that you were able to leave and not look back? Do you sleep well for treating others like they are worth nothing? Why did you get involved with someone who was sick? Did you think it would be easy or were you just settling till something better came along because that is how it felt and looked. Did you think because others had done it before, that made it ok? 

I believe it takes REAL people to stand by someones side and it takes an even bigger person to stand by someone who is battling chronic illness. This goes for family, friends and lovers. So THANK YOU to those who chose to stay and fight with us. <3

 

I encourage some or all of you who are going through  very hard personal situations to write down how you feel and share it, you can even share it here on my site. Let others know they are not alone. We might all be spoonies but we all have different experiences that set us back. Just don’t stop fighting for YOU. Always get back up. A few weeks ago I had another health issue dumped on me and I felt suffocated, shit I wanted to get up and leave me…and I sat in that negative moment for a few days and then I got the FUCK up.

KNOW that it is OK to fall on your knees and scream at the sky…throw your fit and get back up. I am so tired of hearing about suicide in our community. But at the same time I get it.  I get it. This is a huge reason why I write, in hopes that someone maybe YOU wants to give up because you are tired of the pain, the Dr appts, the meds, the fatigue, people leaving, people not understand…..I want YOU to know YOU are NOT alone.

Having a chronic illness, autoimmune disease, cancer, depression etc it sucks and it IS hard but we can be STRONG and we CAN make a difference. I believe this Wholeheartedly. WE ARE WARRIORS

I think before I end this little Rant, I would like to say a few thank You’s...

Thank you Alisha for giving me an amazing Birthday gift that Will be so GOOD for my health….Thank you for being so selfless as I know you have your own battles…

Thank You Jaime for just listening, sometimes that is all I need and thanks for not just seeing me as sick. We should have Wild Cherries cookies everyday 😉 You are awesome!

 

Thank you coworkers for giving me another reason to go to work and always having my back….I am going to miss you SUPER LEAD……

 

Thank you Belle, Cheryl, Sabrina, Ellen, Tamyra and all the other Spoonies who help keep my chin up and remind ME, that I AM NOT alone!

 

 

POSITIVE THINGS GOING ON DESPITE IT ALL:

We all know Rainbows appear when it rains…..here are my rainbow moments….

I recently became a Brand Ambassador for Wartorn Apparel. I love this company because they are Marine Corps Veteran Owned and Operated. If you get a chance, check them out @wartornapparel and use WTA-openkari for a discount.  Support America, Support our veterans!!!  Have a Happy 4th and Remember those who have and are fighting for our FREEDOM!!!!!!!!!!!

I am also working on another project, once we get further along, I will let everyone know the details…Just pray I get more energy to keep working on it.

What are you Rainbow moments? Whatever they are be PROUD of those moments, SHINE on SPOONIES! Keep pulling yourself UP, Inspire others and support each other!

XOXOXO  As always thank YOU for all the support <3

P.S. If you want to share your story, send me an email……