Tag Archives: pain pump

December

Happy December?!

I hope everyone had a great Thanksgiving. My life has been hectic but I thought I would update everyone on what is going on and take a few minutes to answer some emails from last month.

 

UPDATE

My health is just escalating out of control. I just started an even higher dose of chemo and biologic mix and it is kicking my butt. I am not eating much and I spend a lot of my time now puking my guts up. I hate when you puke so much that you can’t breathe. My puke is also now a bright beautiful color of neon yellow. ******TMI picture below, if you do not want to see it, scroll RIGHT NOW past it****

 

I am not trying to gross anyone out but many of my readers are sick just like me and sometimes showing stuff like this ABOVE is helpful to others who may be experiencing the same shit.

I am also internal bleeding more than I was 2 months ago which really sucks and is very painful. My liver and heart have also gotten on board with being an ass. I always knew this crap would progress but NEVER in a million years did I think it would so fast. I feel so out of control, like the disease is NOW driving my body and I have no say on where we are going.

 

OK lets get to these questions, I have promised to answer…..

1. How can I better manage my frustration? To be honest this is a hard question to answer but I will tell you what I do and maybe it will offer you some comfort. When my health symptoms start to take over and I begin to feel out of control, I write and then I try to get out of the house….anywhere is better than sitting at home waiting to die. Pain can really affect your thinking so for me writing is a great way to get the negative out of my head…is it perfect and does it always work?….No but it is a good start….I hope this helps….Just do not give up.

2. Why do I feel like a stranger to everyone including myself?  Personally, I feel like a stranger because when I look in the mirror, I no longer see what I saw 6 years ago. 6 years ago, I was working on my bachelors in Criminal Justice, I thought we had figured out most of my health shit, I felt like my life maybe was getting back to something “kind of good.” And then with one damn fall and a Dr who refused to let me leave his office without knowing the real reason behind my legs giving out….I was diagnosed with something that would forever change my life. When the hammer(our health) falls on us it just doesn’t hit a part of us, it shatters and affects every part of our life. In my opinion we change not because we want to but because pain and chronic illness changes people.

I hate needles and now I have to do chemo and biologic meds every damn week which require needles, so I HAD to get used to them. I had to change. I used to worry about dumb shit and now I HAVE to let a lot of things roll off my shoulders because I HAVE NO TIME FOR BULLSHIT. Life is short and I spent most of my days suffering enough.  What do you see when you look in the mirror? Do you see the old you or the CHANGED you?

As far as people seeing you as a stranger I believe as I have said before, people retract when someone they care about is sick. They have no idea what to do so they  push you away because it is easier than holding your hand through it.  I find that most people just want to watch me from a far. They want to know I am still fighting however do want to be a part of the “fighting”path. It is just too much for some. When you get sick, unfortunately you find out who is really there for you and who is not.  My best advice..be a Morticia in a world of Barbies!

 

 

3. How do I get through the Holidays? I can’t eat much and I find myself just feeling alone while others are out and about enjoying life. This is a GREAT question. Holidays can be hard, I know this to be true! I think you need to not put so much stress on yourself, you are battling enough. Do some little things, have  a hot cocoa with a friend, write a letter to a friend or family member, buy yourself something (splurge a little,) maybe visit an animal shelter or stop by and spend sometime at the local senior center. I find it best if you distract yourself a little from how you are feeling at that very moment. 

As far as eating, when I go out, order something small like a potato or a small sandwich that I know will be OK. However if you can’t eat try a shake or something fun to drink like a citrus vodka 🙂 Just explain to who your with that you can’t eat much due to your health but for them to please enjoy their meal.  They should understand, if not….Fuck em

Remember we do not have to be like everyone else….it is like the saying….

Just make memories…in the end, it is all any of us will have…

 

Normally i separate my “Bitch section and my final thoughts” however this week, they are the same….

If I am to be honest, this picture above is EXACTLY how I have been feeling lately. It is taking everything I have to keep going. I am so tired of chemo, biologics, pain meds, antibiotics, steroids etc! I miss food, hell I miss keeping food down! I miss having a life..meaning I miss working more, I miss training more, I miss school, I miss making plans, I miss going on trips, I fucking miss it all. I am DONE with screaming all night because I am in so much pain and so frustrated that this permanent pain pump was SUPPOSED to be the greatest thing for me as far as pain control! I fucking hate it! I hate it all. I am tired of trying to be strong around others, faking smiles, pretending  to be the warrior many of you think I am.  I think people sometimes forget that because I write on this website/advocate for my health or they see me training and or working at the gun range, that I am not struggling everyday to live.  Truth is on those days, Sometimes i just push myself, I  choose to get up and put one foot in front of the other(no matter how much pain I am dealing with) which some days means writing on here, other days working at the range, other days training. But do not think for one second that I am not screaming inside and praying for it all to end. This life chose me, I didn’t choose it.

I know it is hard for some people who only see me when I happen to be out and about or working to understand what i go through because I am good at hiding it. I think many of us “spoonies” are very good at hiding pain and sickness because we have too. “Hiding” symptoms is something we all have to do at one point or another, if we are to lead any kind of “normal” life.

However, I am getting sicker and it is getting harder and harder to Hide. So i thought it would be good to get some video/audio examples to share. To do this,  I have been leaving my iPad on while at home so that I am able to share more of my life in hopes that people will see more than with their eyes.   This audio clip was taken the other night, this went on for about 4 hours(although lucky for you, this is just a minute and a half of it) and it is a good taste of what my life is really like….

When I first started listening to the clips, i was shocked to hear myself scream so much for someone to help me because I am almost always the only one up. I hope this small clip gives you just an idea of what I go through and if not, maybe next time you can go to the hospital with me? The hospital is always a good time with me.

I am so tired of watching time pass me by. I am tired of doctors and hospitals. I am just so tired. Tired of asking for help. Tired of trying the latest and greatest thing in hopes it will help me in some way. I am tired of trying to get others to truly care. Tired of people telling me I am a warrior and I must continue this fight(like they know what it takes to “fight” this shit.) Tired Tired Tired!

I honestly feel like I am knocking on Heavens door but God doesn’t want me just yet and this frustrates me to no end. Does he not realize how tired I am. Does he not see the pain I am in? Why does my suffering never seem to end?  My disease is continuously ripping me apart and I can’t do a damn thing about it…..I just want it to end.

I am so tired…

I fucking hope this saying above is true!

It gets real OLD fighting everyday and I hate when others judge me because I want to quit and give up. It is you who judge me that do not walk in  my shoes,nor do you help take care of me while i scream myself to sleep, puke my guts out, internally bleed everyday, put poison meds in my body, take me to the hospital and to all my never ending Dr appts.  It is not YOU who holds my hand when more bad news comes my way….

So don’t judge me…Don’t judge any of us, Trust me when i say, we judge ourselves enough!

May it keep picking my head up when all I want to do is lay it down. May it keep me thinking of reasons to not give up. May I continue to have the attitude of gratitude when I am able too…. Until next time spoonies and readers……OXOXO

 

 

 

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……

 

 

 

 

 

 

 

 

 

 

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….

I Stopped waiting for the light at the End of the tunnel…..and LIT that Bitch up Myself!

Hi Everyone,

It has been a few weeks since my last post, so lets catch you all up……

April 6th I had a Dr appt with my Rheumatologist. I have a really hard time dealing with her because she is one of those Dr’s that says, “even if I have your diagnosis wrong, I am giving the meds that will attack it all, so no worries.” Umm excuse me, I am having some new symptoms can we look at those?  “No Kari, as I said before it really does not matter, I treat all blood/immune diseases with the same meds.”  UGGGG   The only thing I got out of that appointment was my blood work forms.

Friday Morning, i spent with a vampire(phlebotomist.) I have been seeing the folks at quest diagnostics for more years than i would like to share 😉 They have online appointment scheduler which I love, no more wasting *spoons* at the vampire house! The ladies who work at quest are always super friendly and I do not feel like a number to them which is NICE!

Saturday I was still feeling this shit spinal headache so i spent most of the day at home, although we did have dinner at beefys. I really do not care for their food but everyone else does so I am about 80% sure it is the chemo meds fucking with my taste.

Sunday the 9th, i made it to work which was great! I love when I can get out and talk to adults instead of spending the entire day with furkids, day in and day out. Even though I get to be around such cuteness….

Cuteness everywhere I go……Girls with guns RULE!

 We do have fun!

Monday I did manage to make it to work although I was having a lot of pain around my pump area. For 5 hours i faked my way through it with a smile. I even got to shoot some new guns. The Glock 10mm was awesome!

The rest of the week (Tuesday-Friday) I did my chemo and continued to have pain around my pump area which by Friday was making me just miserable.  My arms and shoulders were also aching like i had spent the last 3 days at the gym……My blood tests also came back and were shitty, like i expected. I will write more about this in a moment.

Even though all this bullshit, I did have a few positives this week…my BFF Rhonda called and we chatted for over and hour which was great, i really needed her. My friend from work (kim) came over on Thursday to save my ass which I was very grateful for! I drove to Quincy, Ca for a LOH pre ride. I enjoyed this time just driving and trying to clear my head. It was so beautiful up in the mountains. I do LOTS of things to relieve my stress, my health gives me..

 

Brian and I started the Netflix series Iron Fist which has been pretty good so far.  Sometimes when all the shit is hitting the fan, it is good just to occupy your mind with other stuff.

Ok back to the Blood test, I have avoided it enough!  The test was bad as I projected it would be. I know my body!!!! I can NOT emphasize this enough. We all know our bodies….healthy or not! Listen to it! Anyways, my liver is struggling, both my ALT/AST are high, My white count is down(more than the methotrexate(chemo drug) usually does,) and MORE importantly the numbers that tell us how much my cells are killing me is has sky rocketed…..let me explain.

Lets say, you are a healthy person, you go in for some blood work…you MIGHT see a 1-3 on the scale. This is  Normal.

Abnormally High begins at 14

Mine is 98

Now do you get it?! I certainly hope so. So you  can see why I have been in a pure panic. The chemo and biologic drugs that i do EVERY gosh dang week are supposed to be pushing these numbers down! IF THIS IS WHAT it looks like when they are supposedly doing their job..what does it look like when i quit them???????

BUT life goes on…I pull up my big girl panties, fake a smile and go into work.  I can’t talk for everyone but when I feel so much frustration I do one of 2 things: i either freak out or I do funny things..like drive in the middle of the Gun range….HA! Laughter truly is good medicine!

 

This past week was a long week for me, not only because I was not feeling well or the fact that my blood tests were on my brain 24/7 but because I worked extra hours and I was also dealing with another sick cat. Oh when it pours it fucking pours at our house.

I did manage to walk 2 miles this week.. HOORAY!!!

As if things couldn’t get worse, i was reminded that it can always get worse…

On Sunday i went to work as usual, was feeling bad but not enough to call in. I worked my hours, headed home and as I undressed, i saw all this yellow stuff on my belly guard that goes over my pain pump incision. In my head i made all these excuses of what it could be, and just went on with my afternoon.  It wasn’t until around 10 pm, i looked down at my incision and saw a whole in the incision that was leaking out some kind of liquid. I panicked, called the Dr and he said get to the hospital NOW. We headed over and good thing we did, i have not 1 but 2 infections around the pump. There is a saying,” God doesn’t give you more than you can handle.” I call bullshit! Seriously Lord, I am so overwhelmed. How can I possibly keep going?

Always amazes me how the morning can start like this..

and end like this………

So for those people who say, You look so good, how can you be so sick….spend some time with anyone fighting an autoimmune disease…my door is always open….

In the hospital they filled 4 of these bottles with my blood and 4 other vials for testing.

It was no Buenos! Then made me stay the night so they could give me extra strength IV antibiotics. If you know me, you know how much I love spending the night in the hospital. ;-( I will say though, the Dr was nice and so was my nurse. They even wheeled in a spare bed so that Brian could stay with me, because It was the RIGHT thing to do……although he slept…LOL

The following day I was sent to see my Specialist….who was an hour late……

He said he was worried about the infections because of my no immune system, so we decided to take me off of chemo and biologic’s for the next few weeks so that the antibiotics can do their job…or so we hope.  I also have an appt for May 4th with an infectious disease specialist.

I feel this is a double edge sword and this is why, first off taking me off all chemo and biologic’s means that my damn disease will have a party(remember my number from above?) so this will make me very uncomfortable and might do some real organ damage. Secondly, the Dr is unsure if these antibiotics will help with what infection my body is currently fighting which means if it continues, I will have emergency surgery to remove the pump and worse case i could die from the infection spreading to all my organs that are already sick.  Like I said double edge sword.

But with all this going on…

and even if I don’t I will go down fighting with everything I have.

 

 

To everyone out there dealing with Life….Hang in there….never give up. It can always be worse…..

We are all worth fighting for. We are all dying the moment we are born. Some of us are just meant to go sooner than others. I would like people to say after I am gone, that I lived every moment I could. I fought and never gave up. I believe that God has a bigger plan that I have for myself. Am I scared, yes everyday, but if i let fear win, i die now. So when you see me out and and about, know I am fighting with everything I have to be out and about. If you have your health, do NOT let anything or anyone else take time from your life. Live to the fullest. Do it for you and no one else.Everyone goes through bad stuff, just remember it isn’t always going to be like this. As my friend told me once before she lost her battle to breast cancer, “don’t be sad we are sick Kari, we are going somewhere pain and sadness does not exist.” And i KNOW this but it is the getting to that place that is zero fun. I have a hate/love relationship with my disease. I hate it because it is so damn painful, i have to take meds that make me sicker, i see Dr’s more than I see friends, I am bed ridden 70% of the time, I can’t enjoy the things i used to do like play the drums, hike, jet ski, train like I want, work full time, finish my bachelors, and so much more. I love my disease because i now appreciate every second of my life(for the most part), I love people wholeheartedly, i take very little for granted and i have more compassion for those around me.

Speaking of compassion, I would love if everyone I know locally would join us/help on June 24th when we ride for the 22 veterans who commit suicide daily.

Be grateful that we live in the USA and for the people who put up their lives DAILY for ours! a HUGE thank you to all veterans and active duty!! Prayers to those who have lost family members to suicide.

 

Life will never be perfect for any of us, however It is what we do with what we are dealt with, that makes or breaks us. I might be a mess 4 days out of 7 but I get up on my own two feet and fight back the other 3. 

I will never stop believing I have a purpose.

One last note….I know many of you are worried about me, i can tell by the many texts, calls, etc. I promise you all, even when i am as quiet as a mouse, I am not giving up, sure I am probably thinking about it but I am a fighter, I always have been. I don’t give up easily. This health journey has been super hard, I never thought in a million years that I would wake up sick and never get better. I never thought so many people would leave me because I was sick. I never knew how evil people could be when you needed them the most. I never thought I would have to give up so many life goals due to being sick. I never thought I would be living in bed most my life. I learned a long time ago that it is normal for the chronically/terminal sick to go through the 5 stages of grief. I often find myself especially after bad blood tests and or bad health news, that i like to stay in the  Isolation and anger stage for awhile. It is hard to get through your head that your OWN body is killing you and that no matter what you do…it doesn’t change.

Thank You all for your continued support, I love you all so much. Support each other, treat others with respect,  be grateful for every second you get and no matter what your struggling with be BRAVE!