Tag Archives: pain

2017 In Review

If you are reading this….guess what you made it another year too! 

Ya ya, I know I am late posting my final 2017 post..it sucks being sick, sometimes you just do not get shit done……anyways………I hope you are proud of what all you have survived and done this past year……If I had to pick the hardest year to date since diagnosis, last year definitely was it……

My year started off OK. I had just started a higher dose of chemo but my pain patches and oral meds seemed to be working enough for me to be able to do a few things and make it to work. Then March came around and I went in for my 21st surgery(my pain pump) and the whole world as I knew it changed.

This was supposed to be the “best” thing for pain control in regards to a disease that causes 24/7 pain but it has turned into my nightmare. My disease has caused a lot of problems and stopped most of my dreams in their tracks. This pain pump has destroyed everything else. I went from the disease kicking my ass 3-4 days to not being able to move much for weeks on end. It took 7 months for the pain pump Dr to listen to me and remove one of the drugs from the pump that i KNEW was causing me tons of issues. Day one after the surgery everything tasted and smelled like metal and I gained 26 pounds within a few months. I still have the pain pump, see my Dr every 4 weeks for refills, I am back on oral pain meds as well, my spine hurts all the time where the pump is implanted and it is only costing 1300 a month….I hate this thing! PLEASE if you are considering a pain pump, look into it before doing it…..I know it helps some people but NOT everyone!!!!!!!!!!

The whole pain pump nightmare has made me even more miserable than before…if you can imagine that……HOWEVER several other things happened in 2017……

Our Gun range family got bigger, we gained…. Dan, Dimitri, Don, Ashley, Drew, Alisha and Nick

I absolutely love the RGR crew, they may not know but sometimes on my worst days, they truly give me life, they remind me to keep going and not to give up. Thanks guys

I truly believe God brings people onto your path for a reason..some people are meant to stay on it, some are meant to come and go and some stay for awhile and then go on to the next thing. I feel blessed for those few who have stayed on my path and helped me in one way or another.

Thank YOU Jaime for just listening, sometimes that is all I needed….and please .know that your fucking bitmojis always gave me something to smile or laugh about…..I wish you only the best in 2018!

And thank goodness my Marine Ryan is back…woohoo!! We have way to much fun together……….Laughter is good medicine!!

Sabrina, words can NOT express what you mean to me…God definitely brought us on each others path. I know it sucks but just knowing someone is going through the same shit as I am somehow makes it more bearable. God Bless you and your friendship.

Making memories are the only thing in life we take with us….SO make them!!

I spent roughly  32 days this year in the hospital…super thankful to my awesome nurses, Roco and Sabrina. I spend a lot of time with nurses and most have been complete asses so I am BLESSED when i get to  see Roco and Sabrina. Roco even when not my nurse will still come in and make sure I am taken care of…he is a Godsend!  Sabrina will go to bat for me if she thinks the Dr is not doing their job….amazing nurses those two <3

Even though I was busy spending time in the hospital and in bed, i was able to work a few days or more……..and since the meds made my hair fall out… I decided to have a lot of fun with hair colors.

My  health wasn’t the only thing that caused me  great sadness this year… I lost my oldest partner in crime…..Jigs

This really broke my heart because last year we lost his brother Haussen….They were the only ones who loved me unconditionally and never left my side.

These were MY boys..and they will be missed and I pray to see them again someday.

I had a few happy days this year as well. I saw my friend and favorite singer/songwriter Tyrone Wells. Tyrone Wells has been such a blessing in my life…I hope he knows just how special he is and how much his music inspires me to never give up on hope.  Thank you for coming into my life 8 years ago!

Your music inspired my latest tattoo….even though my body is killing me…I try to remember this  life is beautiful…..

FINAL 2017 THOUGHTS…

2017, I hope eventually becomes a distant memory because it absolutely sucked. I went through more trials than I ever thought I could and even though I came through on the other side I am TIRED. I am Tired of fighting with my body.  I pray to God every night to either take me or keep giving the strength to push through because this life although it has its beautiful moments is FUCKING HARD. Nothing I have ever gone through has been as hard as fighting my own body that wants to kill me….not hurt me but kill me.  I have never ever felt so depressed or wanted to die more than I have in 2017. Chronic illness and Chronic pain is so consuming and it demands to be felt in a way I wish on NO ONE.

I pray that 2018 brings people in my life who are not afraid to stick around even if that means watching me screaming, being poked/tortured by awful poison meds and praying to die. I pray people have more compassion towards others, truth is everyone is battling something. I hope that new Doctors come on board with new ideas on how we can fight my mean ass body. I pray God continues to hold my hand on days I no longer want to live. I hope those around me watching start taking nothing for granted….

I do not believe in New Years Resolutions because lets be honest, no one really follows through with what they say, however I am going to hold myself accountable with this quote:

And I am going to remember to do this daily:

So here is to 2018…I pray you all continue to fight, even if it is only for another second. You are not alone WARRIORS….XOXO

XOXO See you all Next year

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

 

 

 

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 email me.

 

 

 

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……

 

 

 

 

 

 

 

 

 

 

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 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

 

 

 

 

 

 

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!

 

 

 

 

 

 

 

 

Your worth fighting for

 

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

Here is where we left off…

 

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

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

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

IMG_7069

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

IMG_7086

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

IMG_7081

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

IMG_7082

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

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

 

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

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

IMG_7063.JPG

 

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

IMG_7101

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

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

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

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

 

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

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

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

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

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

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

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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