September Madness

 

I know 3 weeks ago, I promised to go more in depth in regards to chronic illness and relationships, however my health has unfortunately taken a turn for the worse. These past 2 weeks I have been in the hospital, so my post on relationships has been pushed back but I promise to get it done by the end of the month.

Due to the overwhelming messages I decided to write a little post about what is going on with me.  My cell death and inflammation around my organs is at an all time high right now. It appears that the chemo and biologics are doing absolutely nothing except making me miserable. Which in turn makes my pain go from a 6 to 1 million. No SHIT. The pain is so unbearable that I find myself praying God just takes me. With that said I have been in the hospital a LOT.

Thanks Brian for being my Javier to my Letty 🙂 Nothing is ever perfect but it always seems to work itself out……

I would like to shout out to Alisha who has become a really valuable player in my health crap. I am so grateful to her for taking time to help me. Although I think next time Alisha, You will be required to pick me up on the scooter…I mean it just makes more sense than riding in your truck….HA! * I promise not to  pee*

I also would like to thank the BEST NURSE ever, Rocco. Rocco is an amazing example of what a nurse should be like. I spend at least 70% of my life in hospitals and he is the only one that I have ever met who has so much compassion for his patients. He always goes over and beyond.

He will rub my hair until I feel safe, he will do whatever it takes to make  me comfortable. I am NOT a number, to him I am a person. When you are sick like I am, being a person to those taking care of you, is one of the most important things. So many treat us like numbers or like paychecks.  God definitely put him on my path for a reason. I really love this man, he has been taking care of me for over 8 years. I pray all of you battling your illness/disease have at least one person like Rocco on your team, it does make all the difference. If I ever win a million dollars, I would send him and his family on a dream vacation. 😉 No one is more deserving.

I also wanted to touch a little on the dark side of dealing with your body killing you. I know last month I touched a little bit on the Suicide subject because it unfortunately is a huge part of the chronic/terminal community but these past weeks have been the worst for myself. I think it is important that we be able to express how we feel and not have any repercussions. Like I said last month, your thoughts are normal, this life IS hard. The pain, the Dr’s, the hospitals, the lack of support, frustration etc it is REAL. I hope that all of you going through it, keep pushing through it. I have my days when I am just DONE, but I pray that God brings me/all of us through it. Lately life has been really hard on me because I feel that everything is now beginning to slip through my fingers. Everything that the disease to this point has not affected is now affected.  I feel so empty and so vulnerable. I often wonder what the point of my life is?! Some days I can answer this question and some days I just feel so clueless.

Last week I had an appt with one of my specialists who I know hears me but really does NOT listen. It took all I had but I told him that I AM DONE, I will NOT live like this anymore, so he needs to help me figure this out. I am still unsure if he was  completely listening or not but I see him again this Wednesday to change some of my meds that go directly into my spine via my pump. Only time will tell if this will help, if it does not then this….. was for NOTHING.

I told my Dr……

I also see my disease specialist this Thursday because this chemo/biologic mix IS NOT working and we need to look at more aggressive(like the shit i already take isn’t ) treatment options.My disease at this point is winning. My cells are taking over and attacking all my organs, If it continues at this rate, I will not survive much longer. I try not to think this way but it I see my body deteriorating. The internal bleeding is insane, I would show you pics but do not want to freak you all out. The weakness that has always been apart of my disease is extremely overwhelming now, I barely make it up to go to the bathroom anymore. I am lucky if I make it work 1 day now. As I said above, I see all these changes coming on…..as much as i want to keep fighting….I am tired. I still believe this is ME….

but my body quickly reminds me..

I am no longer afraid to die, I believe wholeheartedly that I have fought as much as I possibly could. So if my time is coming, I am ready, I am tired, this life has been full of battles, battles I am proud to say I fight standing up. I am living proof that you can keep going no matter what. In 2001 my specialist said I had 7 years to live, here it is 2017. I have already beat the odds and I will continue to fight until the very end.

I still have a few things to finish, I have this book deal that I want to finish and I just became part of another project that I am super excited about. Not to mention I love being at work…..I mean who wouldn’t want to work around this shit?! And I  really miss training……#america #pewpewpew

So until God takes me I am going to continue to fight and try to enjoy what good things life does bring my way…..I pray you all do the same….XOXO

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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……

 

 

 

 

 

 

 

 

 

 

I BELIEVE YOU

 

Lets do a health update and then answer a few readers questions!

Health Update:

Friday the 19th I went in for my pain pump checkup and Refill. Good News all around….infection seems to be gone for the moment( they think it might come back once i restart chemo meds and biologics later this week, but all POSITIVE THOUGHTS HERE!!!) and the Dr got into my pump the first time to refill! Whoo hoo!!

I restarted my biologics that same night and Chemo i restart tomorrow MONDAY. YUCK

Just restarting the biologic doses I am on, restarted the internal bleeding. UGG I can’t wait to add in the Chemo again…..(i hope you hear the sarcasm in my voice.) HA     At least I can say they finally might have my pain(mostly) under control with the pain pump, which is great…I EARNED this scar!!!! 

BEFORE PIC                                                                                   AFTER PIC(9 weeks later)

    

People ask if it hurts still…yes it does if i move to fast or bend over to far. At night I can’t sleep on my side and sometimes it pinches. Other than that I am NO LONGER screaming which is good..RIGHT?!  The goal for me is to be in less pain with whatever time I have. So I am hopeful this pump will do its job 24/7!! I will keep you all posted! If you missed out on Pain Pump Surgery 21, read post titled, “speak the truth.”

Once i restart the chemo/biologic mix tomorrow, I will write an update on how my lovely body is reacting to the fun!

 

 

Readers questions:

  1. How do you respond to people giving their opinion on how you should treat your disease? This one is easy to answer….

 

2  I read your post on how people have treated you in the past for your illness/disease, does this ever get better? The honest truth is NO. I see it with others and personally experience it all the time. In MY opinion many people get scared when they see their loved one battling something they know they can NOT win. Because of that they sometimes push that person away  so they do not have to go through it too or they become complete jerks(to put it nice.) Truth be told, i would rather have someone push me away than treat me like crap. I have had people leave me when I need them the most, take life experiences away from me,run away because “watching” me die was to hard. But you know what, it IS their loss and it always will be. And that is what YOU need to believe because it is the TRUTH. It is ok to feel hurt but pick yourself off the ground because it is YOUR life now you are wasting on someone who wants NOTHING to do with you. 

Be THANKFUL they left when they did! You do not need people that treat others like this in YOUR life, let them be other peoples problem! 😉

3  What does your normal week look like? And are you satisfied with your life as it is right now? HMM great questions. I work mostly Sun-Tuesday for a few hours a day. The other days, i am either in bed or in my comfy chair due to my meds and disease beating my ass. Sometimes i am able to go on motorcycle rides, sometimes I am able to train(guns/personal defense) which i love to do! But mostly I spend my time sick. 

Am i satisfied with life? I would be lying  if I said Yes. Before I was diagnosed with Multiple Organ Ra, i was working on my bachelors degree in Criminal Justice and planning my future. Then my cells started attacking my organs and changed my life forever. Now I spend my time with Dr’s more than friends. I am on weekly POISON medications, I live in my bed/chair. I walk with a cane most days. I am internally bleeding, i have had 21 surgeries, i now have a permanent pain pump in my spine. Satisfied NO!!! But with that said, i am trying to accept my life now. This does NOT mean I give up, i still push myself especially at work.

 #TRUTH

My advice to someone who is just getting diagnosed with a chronic/terminal disease is this: NEVER FUCKING GIVE UP ON YOURSELF! I could have given up years ago when Dr’s had ZERO clue what was going on, When Dr’s gave me 7 years to live, when people i fucking LOVED unconditionally left me without batting an eye, when my body hurt so bad I wanted to Jump off a bridge. NEVER DID I GIVE UP

 

I will answer more questions later this week as long as the chemo/biologic mix doesn’t fuck my life this week…..

Final words……..If you are reading this, chances are my life sounds a little like yours…..don’t worry so much, you GOT this! This is OUR life now. Enjoy the good days as much as you can….

DO NOT let go of ALL your DREAMS or HOBBIES…..Find days that are good for YOU!!!!!

Enjoy time with friends WHEN YOU CAN!

Even when they act WEIRD Ha!!!

MOST OF ALL…..

 

REMINDER TO EVERYONE NOT BATTLING A DISEASE

XOXO KARI

 

 

 

 

 

 

Trying to wrap my mind around what’s REAL..

A Quick Update About Last Weeks Events

The beginning of the week I felt OK, i worked on Monday, walked a mile on Tuesday, did some grocery shopping and even made it to the HOG meeting.

My belly was hurting some and my pump had been being an ass but I thought i was really improving.

I will not say I was feeling great but I was able to do some of the things that i normally did before last months surgery.  I really felt I was finally making some progress….I should have known that it wouldn’t last long………..

Here is how my Thursday went….

I got up around 9 am, had a cup of cocoa coffee, got dressed and then headed to see the Infection Specialist. Within 10 min of talking to her, she said, you are going to be admitted today. She continued to say that due to my autoimmune disease, this pump would never fully heal. It would stay infected and eventually turn into sepsis. In that moment i felt so helpless and overwhelmed.  I asked her if I could please go home and get a hospital bag packed and make arrangements and she agreed. I left her office in tears because out of 21 gosh dang surgeries this one was the worst!!! All i could think about was i being told I had to do it AGAIN. How could I?! I am still healing from this surgery, so how can you rip me open and take it out? I could not even make it home, so i stopped half way home which was at work. Thank goodness Kim was there! She got me to calm down enough to get back into the car and drive home.

I packed a bag and waited for Brian to get his post covered so he could take me  to get admitted.  While waiting I called my main Dr who disagreed with the Infection Specialist. He said he believed it would heal eventually but told me to go ahead and go to the hospital where they could run some extra tests. Brian and I checked into my room at the Hospital around 3 pm. Once I got settled the Dr on call stopped by with a “game” plan. He had talked to both my specialists and said they were on separate sides of the issue but that he had convinced them to run some tests and then decide my fate. All i kept thinking was WHAT??!! what about what I want??????!!! Next thing I knew they were in the room poking me a million times, they took so much blood i became dizzy.

Then came the fun IV pokes…OH HOW I hate that i have shitty veins!!! I can not wait to get a port. Thank  goodness after 7 pokes they brought in a vein finder…

 This was able to show deep veins.

I wish they had started with this!

My Dr also showed up around 9pm which was nice because at this point I needed to see a familiar face. 11 pm rolled around at apparently this is a great time to do a CT scan. We then stayed up watching movies on my laptop. If you are like me and hate staying in the hospital, take a laptop and some movies or use a website like Netflix. Doing this keeps my mind busy and I seem to worry less about what is going on around me.

Friday morning I awoke to my CNA taking my damn blood pressure and the phlebotomist taking my blood. OH how i hate this shit! Let my ass sleep!!

About an hour later my Infection specialist popped her head in to tell me the news and the plan agreed to by her and my other Dr. Since the CT scan showed NO deep infection only top skin infection that they would give me MORE antibiotics and watch me for a week or so.  IF the top infection began to go deeper, the pump would have to be removed immediately. Ok great so now we have a plan?! at least for this upcoming week…?!  She said yes however she thought she would warn me about having any kind of an infection could turn to sepsis in a blink of an eye due to my serious autoimmune disease, so in her opinion it should just be removed.  UGGG Yes i get it Doctor, you want it OUT of me! And he wants to salvage it!  Got it!

With that I got up packed my shit and left the hospital.

NOW with all this said, these are MY THOUGHTS on the subject…..

Several people think i should be removing this pump. Some of you think i should stop working the few days I do and spend 7 days on bed rest instead of the 4 I already do.  Some of you want me to stop doing chemo. Some of you think i should do more chemo. Some of YOU have LOST your FUCKING minds!

This is MY body, MY life and some people have forgotten that! Until you have walked in my shoes, do NOT tell me how to BE sick. Trust me if there  was a damn manual on how to die, i would have read it a time or two. Do you think that I like doing chemo meds, biologic, pain meds every week? Do you think i chose to walk with a cane more than not? Do you think I like not being able to eat the foods i want? Do you think i like thinking about death almost every day? Did i choose to have 21 surgeries and counting?! Do you not think I am so overwhelmed by all of this?

I would never tell you how to feel about watching me be in pain, suffer and eventually die. I know no one is purposely trying to do harm but it really does. It makes me feel awful and it angers me. My time, all our time is limited, so why waste it on hurting someone even if it is accidentally. The only solution I have to this problem , is just talk to me about how you feel. I will try to listen to all you have to say but please understand I do not want to hear about the latest greatest “cure” for this and that and I don’t want to hear about how i should spend what little time I have doing this or that……. so try to keep these 2 things to a minimum.

Trust me when I say that I try with everything I have to be positive. Which is very hard as you can imagine.

 

If you want to know more about my health and how far I have come, READ here: All About ME   This is where you can read a “readers digest” version. I am currently writing a more in depth version that will be available later this summer.

Having more BAD luck than good does not keep me down, it just reminds that the Best is yet to come!

  #TRUTH

Besides I did have a few good things happen this week:

I got my compact back from Zephyr Defense. My friend Dan does amazing work!! I love the Punisher looks fantastic on it! Now both my Gun Kidz look great thanks to Dan!

 

I also was able to make it to work TODAY which was so good for me! My coworkers have a way of making life a little more worth living!

I am sure this week will have its complications but I will hit them dead on like I do every damn week! Just remember to NOT judge others!

 

I always try to follow this plan…..

And when that stops working, I always have a place to go….

 

For I know that my body is getting tired….

 

But never fear I will not just GIVE up, I will continue to crawl, scream, fight and push myself until I hear, “come to me.”

Have a good week and i will keep you all informed, no matter what the Dr’s decide…..Thanks for all of you who continuously supports me in all I do and don’t. Love you all times infiniti xoxo

 

 

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!

 

 

 

 

 

 

 

 

Fear and the new “normal”

IMG_1190When Fear cripples you, it tears apart your hope. Hope that you will be ok no matter what the day brings your way. Hope that someday you may feel like a real person again. Hope that life will go on. Hope that someone will listen to you and tell you that everything will be OK. Hope that tomorrow will come and go. Hope that you will not be alone through the darkness.

This last month I have been waiting for the Specialty pharmacy to drop off my meds. The meds that may or may not help fight the war inside my body. Then yesterday I saw the truck pull up at the house. I thought to myself if I don’t answer the door then the med will never make it into the house. If somehow the man carrying the over sized cooling box will trip and the needles with the meds in it will fall out, break and soak into the concrete.

Its funny looking back on it how ridiculous my mind was thinking but truth is I am petrified. This drug is another one of those…take it and SEE what it does…Oh by the way you have a HUGE chance of getting lymphoma and other cancers, your immune will NOT exist because you have to also do your chemo meds on top of this drug, its best to wear masks and gloves to keep the germs away. A simple sneeze from your friend may cause you pneumonia. Oh and my favorite….Sepsis does occasionally happen with your disease and this drug…so you could DIE within 24 hours after first injection…. I COULD GO ON AND ON….   And then I jump on the internet and read a thousand cases of all the above LITERALLY!!!  I honestly would not be as scared if I did not fall into these categories regularly. For example:  When my liver was dying two(2) Dr’s told me that I had 1 in a trillion chances of the shunt they placed in my liver to get infected, cause serious issues and then need to be removed.  Guess who had their shunt removed less than a week later??? Yep you guessed it ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Or another favorite…you have some cysts on your ovaries, we will go in and remove them and you will feel better. Before surgery please sign this form stating that the hospital and Dr are not liable if something goes awry and we need to do emergency surgery. I remember asking the Dr what the chances were of something going wrong and she said it is extremely RARE, in fact she had never seen it in her years of practice.  Guess who had a FULL HYSTERECTOMY at the age of 23???? Yep you guessed it again ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  And to top it off I am allergic to a million meds which A. am I allergic to this one and B. make it hard for Dr’s to save my butt once something does go wrong.  I am barely getting used to this chemo drug that makes my life interesting for lack of a better word.  Its funny how after a while you start getting used to being sick, vomiting, feeling fevers, feeling cold, shaking, being miserable, tired, and in more pain that I could ever imagine being in. ugg

So do you all see now why I just want to RUN??!! Run and never look back.  I feel like I should just say my goodbyes because chances are I am screwed if I inject this drug.  And yes for all you OPTOMISTIC people out there….i have thought about the other side of this…like maybe for once I will be on the other side of things like maybe this drug will join forces with the chemo meds and fight in the war inside my body. I have tried to be more positive about this but as you can see I have a lot of history with bad health stuff.  Either way I have to make a decision soon. So for now I will keep doing my weekly chemo meds, I will enjoy a Halloween party and then as long as we have all the ducks in a row…NOV 2 will be the day I take new mix.  I just need to get some things in order and some other people on board.

Who would have known how exciting my life would be?! You know awhile back an old friend of mine bought me a book titled, “He walks with me” and to be honest with you all, I think it has been one of the reasons I have made it as far as I have. And then I think to myself if its my time to die in a few weeks, then its time. And on the other side of it, if it makes me sick, then God will walk me through that too. Either way I am covered right?!  Kind of reminds me of a friend who once told me not to worry so much because where we were going, there will be no more pain and things were going to be good!  She died a few months later of cancer. I was so angry because she left me, I felt stronger with her sick butt beside me.  I pray a lot and I still have days where I feel so lost, not about where I am going but how it is happening. This shit is painful, throwing up and internal bleeding is NOT FUN. Constant leg and back pain hurts like hell. Not being able to sleep is terrible and all these gosh dang meds that we are forced to try/take have many bad side effects are insane!! This is not a fun way die. And its lonely. No one really knows how to deal or be like around you, you’re misunderstood and medicine is not perfect.  And Dreams get crushed. I have watched almost everything I have worked so hard for disappear. Once my dad told me, no one will really love you as sick as you are. Now I find myself living the way they want to live, I live others’ lives; my dreams/wants are no longer a priority.  Its strange how quickly you just kind of settle into a role that someone else wrote for you. You’re now sick, you can’t work much, you must live here, eat this, take this medicine, do this therapy, ask for others to help with money, oh and if you want something, forget about it because it’s not something they want. I am an A personality so being under so much of others control drives me crazy. My brain wants to finish my Bachelors in Criminal Justice, buy a small house; you know those trailer ones….love those! I want a jet ski again. I want to hike and run till I can’t breathe. I want to travel and see the world. I want my own Harley again. I want my long hair again. I want to sleep all night long. I want zero meds in my body. I want a love that never ends, I want a HEALTHY body. I WANT MY LIFE BACK!!!! But my body wants NOTHING to do with those things and I lack people in my life to help me accomplish some of those things.

This is my new normal now. And don’t get me wrong, I am getting used to this new “normal” but I still feel so empty. I had plans before all this went down. Nothing was perfect but It was close.  Recently I received a letter where someone said, “ you have the biggest stamp on my heart.” This statement among others really touched my heart because through all this sickness I have forgot who I am. This person knows exactly who I am and no matter what time I have wants me to never forget it. I want to take a moment here and tell all you *spoonies NEVER push people away who love you unconditionally no matter how scared you are. Pushing away the ones who belong at your side only makes you lonely in times of need. Keep the ones you love close. 😉

Even though this is now my new scary frightening normal it does not mean that I need to forget who I AM. Even if I have lost a lot along the way.

The joy of the Lord is your strength-Nehemiah 8:10

Day 2

How have these illnesses affected me?

These diseases have affect many things in my life. I have gone from working to   living on disability. I am 5 classes from graduating with my Criminal Justice degree but had to walk away because i am so exhausted and in pain all the time. From being with people i love and who claimed to love me back only to watch them walk out on me due to my health and the challenges it brings. From walking like a normal adult to walking with walking devices. Relying on myself for everything to now being dependable on others. I need help bathing sometimes, i need help dressing. I live by when my meds are due. How fatigued i am or not. How much pain will today bring?  I mostly live in bed instead of enjoying the outdoors. The truth is i had to find a new way to live, with new rules, new people, new goals. It has completely changed my life