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……

 

 

 

 

 

 

 

 

 

 

There is Always Hope

I have no idea how your week has been but mine has been crazy to say the least.

I have so much to say…so lets get started,

Last Friday, I woke up to my knees feeling like shit, usually they ache but do not cause me pain like I was feeling. I called the Dr however she was unable to see me till the following week.

Saturday I woke up nice and early because I had made previous plans to go on the Unionville Ride. I am glad I went but it took all i had and then some.

Once We got home, I went straight to sleep. Between the heat and the pain, i could take no more.

Sunday i went to work and quickly found a way to make the day go by fast….(with Alisha’s help)

After work I made enchiladas for my coworkers that were working on Monday..

I love to cook when my body allows me too!

Monday I went to work….YA 2 days in a row! #shieldmaiden 😉

By monday night my entire leg was killing me and all the blood vessels around my knee had blown..

I tried everything to make me comfortable but nothing was working, not even my K-tape.

It is nights like this i just want to run away….I know running away doesn’t do anything because my body comes along but i think you get what I mean. I feel so helpless. Nothing I do ever seems to be enough for my body.

Tuesday i woke up with more pain than i had the night before and i could barely walk. I laid all day in my recliner and cried, it was all l could do.  

I thought Tuesday was bad until Wednesday rolled around….my eyes were blurry most of the day and i kept ZERO food down. …

Now we are at TODAY….lets just say I should have stayed home. I got up feeling not so great but knew I had to eat. So i drove down to Einsteins for my Birthday bagel and Berry Lemonade. On my way home, i was pulled over for speeding….HA! I knew had an extra $200 in my pocket to burn….NOT………

After the fun filled 30min with the Police Officer, i headed off to the Dr. I sat in the waiting room for about 20min panicking about what I would soon learn. I knew today would be a day I would soon not forget, it always is when we go over blood work and other testing.  As the Dr was going over everything, I found myself disappearing into the background. At some point I just stopped listening because I could literately hear no more.  I just wanted to hit the escape button, i wanted to Stop playing whatever game this was. I kept thinking this IS NOT MY LIFE.  You have the wrong tests, I am sick enough, I do not need anything new. I really don’t.

I nodded to all her questions and then politely excused myself as I felt so overwhelmed especially when she said, “I can send you to Stanford, but they will not do much for you because there are not many meds that show any real improvement with this disease.”

I know this might sound funny but i go to the Dr for HELP but rarely do I get any real HELP. I understand they are human too and can only do what they can but I just thought since i can’t HELP myself that maybe someone who went to school to HELP others can HELP me….JUST ONCE….But instead I leave with a stack of Poison meds…I just don’t understand, i really don’t……I feel so lost and so helpless…There really is no  light at the end of the tunnel……….THIS IS HOW I FEEL IN THE MOMENT.

I am sure you are sitting there judging me but unless you are in MY shoes, please try not too.

Most of you know I try to be Positive as much as I can but with the month I have had and the 2 new diagnosis’s I truly feel lost.  Even with that said, i will never give up, i will forever fight up until my last breathe. I am not a sit in the corner and watch my life pass me by person, however I AM ALLOWED to fall apart occasionally, anyone going through this would.

Tomorrow IS my birthday which I like to CELEBRATE because in 2001 my Dr said i would not live past 7 years..So EVERY birthday means a whole lot to me. EveryDAY means a lot to me, EVERY SECOND means a lot to me. This is the very reason why I write and share how I am feeling so that it does not fester and waste anymore unnecessary time that I may or may not have. And I pray it helps others who are going through the exact/similar shit.  Just in the last month 2 people that were in one of the support groups i attend committed suicide. Suicide is not uncommon among the chronic pain/chronic illness community.  Every time  i hear that another one of us has taken their life, it breaks my heart and I am quickly reminded how i have to stay ahead of the beast, that could so easily take control.

Hugs and Prayers to all of us who are going through something tonight, it does’t have to be health shit, it can be anything…..we ALL go through things…..Life is NOT perfect for any of us…..But together WE CAN MAKE A DIFFERENCE….Thanks for all your support <3

 

 

 

 

Big Things On The Horizon

I Do not know about all of YOU, but I am done with all this damn cold weather! It is about time we have some real SUNSHINE!! 

I have so much to say so please be patient……..

Before I even begin to fill you all  in on what is new….I would like to take a moment to talk about 2 things….

No matter what is going on in the country, we can’t get too caught up in what the MEDIA says or doesn’t say. We must always remember those who have and are fighting for our country. .

Because of those who sacrifice for us, we live in a FREE country…Lets keep it that way.  Also Guns DO NOT KILL people, People kill people. A gun is a tool, so STOP blaming the Gun.

P.S. I will not argue this opinion because it IS a fact! Just like Rules/Laws ONLY work on LAW ABIDING citizens…..

Secondly, I want to shout out to Sabrina…you know who you are girl. 😉 It is SO important to be able to share with others who are fighting the same battle.  Thanks for reaching out. Super excited to watch how our journey plays out. 

If you are reading my posts and are feeling alone, please do reach out. I am here to chat with or just lend an ear. Please know that you are NOT alone.

To my spoonie family…..i thought we all needed a giggle tonight…

 HA!!!!!

 

OK, now let’s get you all caught up on what my ass has been doing or not doing since last weeks post.

June 8th (Thursday) I started the day off by going AGAIN to the Dr because the Metal taste/smell was still in full force. I also talked to my New friend Sabrina.

Friday was just a regular shit day not mentioning. Ha!

Saturday I crawled out of bed and went on a Hog chapter ride to Graeagle Ca. I was still not feeling well but I knew it was important to get OUT of the house!

Sunday it was back to work….as you can see….

Alisha and I were feeling a little FOXY..

and Micah and I were trying to figure out who actually was working 🙂

Monday was another Fun Filled work day…

Fun was had by all, we even watched the Alien movies..

But then it all ended with Shit meds…

I spent the rest of the night in the bathroom and in bed. I absolutely hate these days. (enter sad face here)

Tuesday and Wednesday were a complete blur. I spent 80% of my time in the bathroom. My pain was at an all time high and NOTHING was helping not even my pain pump. ugg

Which brings me to TODAY………………………………………………………………………………………………….

 

 

As of next week Monday June 19th, I will be STOPPING ALL POISON MEDS.  Now before you get all CRAZY on my ass, THIS IS MY LIFE. I know some of you will be understanding maybe even happy while others will say I am committing suicide…blah blah blah….. Here is why I AM DOING WHAT I WANT TO DO……

First off well its MY life NOT yours.  It may not be what you would choose, but again my life. Just in case you haven’t been following along these last few years…I have been doing chemo meds for 5 years EVERY FUCKING WEEK..lets add that up…that is 260 times I have had to put that shit in my body. I have been mixing it with my Biologic for 1 year. I AM DONE.

Secondly, My damn disease does ENOUGH to me without all the poisons they add to it. Do you know what my disease does to me BY ITSELF?! Lets take a look…..

Fatigue(this is different that being tired, read about it), discomfort all over the body, insomnia, hair loss, dry skin, being cold(raynauds), bruise easily, Rash’s, skin sensitivity, severe pain, swollen joints, dry painful eyes, swollen glands, excessive thirst, joint pain, morning stiffness(and not the fun kind), muscle weakness, muscle cramps and twitching, weight changes, abdominal pain, distended stomach, seizures around liver, anxiety and so much MORE….

If you really want to know more..Read all about Multiple Organ Ra, Nash, Gastroparesis,Raynauds and Ulcerative Colitis. These are ALL autoimmune diseases and are very miserable. There is NO CURE and more often than not Dr’s just hand out the “normal” meds they hope will help slow the progression of the diseases. These are all for the most part these meds fall into these categories: Immunosuppressant Drugs, which do just what you think they do, they slow and in some case STOP your IMMUNE system, Anti-inflammatory(self-explanatory,) and Disease Modifying meds(TNF blockers and Chemo drugs like Methotrexate.)

Thirdly Louise told me before she died, “One day you will choose quantity or quality of life.” She was also the same person that said, “do not be sad we are sick because one day we will be somewhere there is no pain or suffering.”-Thanks Louise

I am to the point that I choose quality over quantity. Life is so short as it is. I want to enjoy every moment my body allows me.  Some Mondays are really good until i take my meds and then I am down for days. I just do not want to do it anymore.

For those of you wondering what will happen when I stop treatment(if that is what you want to call it) here is what some say…

Healthy days article(2013)

“Rheumatoid arthritis “is a progressive disease, which, if left untreated, can significantly and permanently reduce joint function, patient mobility and quality of life,” study lead author Dr. Vibeke Strand, a clinical professor at Stanford University School of Medicine.”

Everyday Health (2017)

“If you’re not following your prescribed treatment plan, it can lead to flares that can cause joint damage to accumulate, Dr. Worthing says. “And once the damage is done, it is not likely to be repaired.”

Health Line article written by  Ashley Boynes-Shuck on November 20, 2015

“According to a study of nurses’ health by Brigham and Women’s Hospital (BWH), patients with RA have a significantly elevated risk of death, typically from disease complications related to cardiovascular or respiratory problems.”

Some of my Doctors believe this is completely dumb to stop meds because my RA and Ulcerative Colitis work well together destroying my body, left untreated, my legs will get worse and I will end up in a wheel chair sooner,  my joints, organs will struggle and eventually i will die due to some complication of the diseases.

With this ALL said let me just say this, I am Not doing this on a whim. I have been on these damn meds for 5 freaking years, 5!! In that time i have watched my cell death RISE regardless of what meds i was taking. Why on God’s Green earth would I continue to take something that is not doing much for me?!

On the other side(playing Devils advocate) what if these meds were slowing some progression of the disease that could not have been measured? Are you ready for what your disease might do in full effect? Meaning with nothing to STOP it?

In answer to that…..I am, I am as Ready as I was to take that first dose of chemo meds 5 years ago. Nothing in life is for sure. But what I do know is my life ON all these crap meds and they have got to GO. This is MY life.  Worse comes to worse, I can go back on them….but for now they are GONE..BUH BYE

 

So here is MY plan!

Last week, I bought  this amazing book.

I am going to be making a lot changes as far as diet, how i deal with stress etc. Everything affects our health!

I will still see a rheumatologist and an internist. I will still watch my cell death. I will still be scared.I will still be battling my disease BUT on my terms. I will still have my down days but they will be ONLY because of MY HEALTH, MY DISEASES not the crap meds!!!

I have no idea if any of this will help but at least while trying it, it will not hurt me. In the end I want to be able to say, i lived how I wanted. Just know that I am not the only one battling autoimmune diseases and stopping all man-made meds. Many people are trying new things. ***disclaimer*** this does not mean that i want to hear all about your oils, creams, reading material etc that you have tried. I do not mind you sharing but pushing me to do what YOU want is not welcome. I have already wasted 5 years doing what someone else wanted me to do. I have no idea what my future will bring BUT i do know it will be on MY terms. If I die sooner because i chose to live the way I wanted to then YA ME.

It doesn’t matter if we take all these poisons or try to take a more “healthy” route, we still have anxiety about our diseases. All those things I mentioned above will not JUST GO AWAY but i am praying that I find a better way to deal with them WITHOUT the poison meds. And like I said, I can always go back to the poison meds, it is not like they are going to go anywhere.

I will continue to Push myself to do what I can when I can. I will continue to NOT let my diseases DEFINE who I am.  A friend of mine recently reminded me to get out and travel more, he is so right, so I am planning on traveling more, i just have to work out the details. I plan on traveling where I know people so I do not waste money on hotels or time trying to  figure out what to see, etc  So if you want to see my ass, hit me up….

Finally, I pray that my choices do not hurt me more than the meds have been doing. I pray that my diseases do not progress so much that I can no longer do anything. If I am honest with myself, i know that my cell death will continue to rise and that my organs that are already affected will continue to get sicker and the ones that are not yet affected will be.  I will not lie and say that I am not afraid. But I know a lot more now that I did when i was diagnosed and I know that I am truly not alone….

Again this is MY life. My Truth. 

Now that I have just Blown your mind…..let me fill you in on some other stuff…

  1. I am looking for some better Dr’s and I do not care where they are located. So please be on the look out.
  2. I am currently working on a project but do not want to say too much about it yet. Just know i am super excited to be able to work with some great people and be able to hopefully continue to help/inspire others and maybe make some money.
  3. The Conway household as a whole is going through some changes and have some exciting news(exciting to us anyways) to share real soon……Stay tuned

 

 

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

 

 

 

 

 

 

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!

 

 

 

 

 

 

 

 

What it felt like being Vulnerable

 

After many requests, I have decided to talk about my personal experiences when it comes to being sick and how people in my life have responded/acted. This will be one of the hardest posts to date. This is very personal & painful so it will be as brief asI can   make it. *if you are dealing with this situation and want to talk, please message me, i am here to help*

 As I have said before many people who are dealing with chronic/terminal health issues have been left in the dust by spouses, boy/girlfriends and or friends. This can be for many reasons however my opinion on  this is…….we DESERVE better! 

In my experience and in my opinion some people have come into my life thinking they CAN deal with someone who is sick. They have this clouded view of what “sick” really is. Maybe she just has a cough?! Maybe she just has a bad day?! I am sure her pills will fix her! I can do this!  And sure in the beginning it seems ok. Then dates become overnights, and overnights become everyday and everyday becomes living together and then they FINALLY SEE WITH BOTH EYES.

.

In 1997-2005 I had more procedures than either my husband or I could count, not to mention the 2 surgeries a year. Then add in the stress of all the Dr appts and hospital visits/stays with ZERO family support and that quickly added  up to a painful divorce. 

At the time I thought this was one of the worst things that I had ever gone through. For 9 years, My husband was the only person I trusted to go through this scary health stuff and now I found myself on my own. 

My health spiraled out of control. In the next couple years, I had several more surgeries to remove tumors, the internal bleeding began and then my body rejected my shunt in my liver. It was after the shunt surgery I was diagnosed with gastroparesis. I struggled with all this emotionally and decided to keep people at arms length because I didn’t trust anyone to help me.

Then in 2007 I met someone who would change everything. FROM the beginning i told him about my health and how sick I was and he replied with “no problem.” For the first 6 months he was great. . Between both our jobs and my health, we saw each other when we could. Every week like clockwork, he would stop by while i was sleeping and pick up my weekly medical scripts, have them filled and then on the way back to my place pick me up a Keva Juice. He always made sure I had my meds & my favorite health drink.  He acted like he cared, he made me feel beautiful and special every moment he saw me, but i still kept him at arms length even when we moved in together. We would talk all the time about how he didn’t like me pushing him away and keeping him at arms length. But something inside me didn’t feel safe yet. I didn’t want to be “left or alone” again with this health crap. I just wanted someone to stay and make it ok.  2 years into the relationship He began to use my health against me with comments like, “why are you always “tired” and in bed again?” “we do not do much anymore.” He even made fun of me when my legs gave out. I know some people use comedy as an outlet for fear or whatever but it was not funny to me. In fact i was scared to death.  At this point in time we did not know about the big disease lingering in my body. We just knew about the U.C, Nash and gastroparesis but i knew something else was going on. I can’t count how many times i told him that something else was wrong. But neither him or the Dr’s were HEARING me, they just kept blaming all my symptoms on the other diseases.  Everyone made me feel like I was crazy, like it was all in my head. I had no where to turn. I felt lost and scared. Even though i felt this way, i stayed with him for 4 years. Things sometimes were really good and he would show huge support like pounding on his chest and saying, ” I AM NOT LEAVING, I am not like anyone else, I am here for YOU, let me In and stop pushing me away,” “i love you!” Eventually, i dropped my guard and I feel that is when he went in for the kill. I gave my all thinking this was It, I was finally going to feel safe again, just like I did with my ex husband. I really  wanted to feel a part of  a loving family.  With my guard finally down we planned our dream wedding and our future. Then 5 weeks before the wedding we went out to dinner and he was just acting odd. He kept saying, “you know I love you, you are such an amazing woman, you are so special to me…blah blah.”  Something in ME just knew…..

That was the night i remember not sleeping much, i knew something was about to change. The next morning i found him sitting in a chair in our front yard by himself, I had a bad feeling. I walked outside and as he looked at me, i said, “just say it.” He gave me a puzzled look and said, “say what?” I said again, “just say it!!!!” He then said, “I can’t be with you anymore, you are too sick, because of you I feel like I am sick too,” “I can’t do this on my own, no one is helping us.” That day is a blur but I do know it was full of rage. The pain was more than i could deal with. I have never felt such betrayal. How could you LOVE someone and just turn your back like that? What kind of person are you? What does that say about you? Do you know how hard it is to be so physically sick and try to function like a normal person? Did you have to waste 4 years of my life? Was no one going to love me as physically sick as i was? Was I just yesturdays trash?  I had let my guard down again and now felt like I was being ripped into pieces.He had just destroyed our family with one sentence. I now had more questions than I did answers.  My health was up in the air, i knew something serious was brewing and that scared me and now the person I was leaning on for support was throwing me to the ground and standing on me. I wanted to die. I didn’t know how i was going to take care of myself as sick as i was getting.  I moved out, again on my own. A year later I would finally be diagnosed with multiple organ Ra. It was NOT in my head and all the symptoms I was having was not from the other diseases!!! I could finally breathe, I now knew what was wrong with me!  My second of clarity would soon turn to sadness as the  Dr’s dropped the bomb……You no longer need to worry about the other 3 diseases because This one will be the one to kill you…you need to start Chemo meds ASAP!  I told you..ALL of you!!! So glad i NEVER gave up on myself the way you gave up on me or I would probably be dead. 

It has been a little over 5 years now and sometimes I still feel that pain, the pain of my health being used against me. I would of rather he said, i hate your cooking, the way you do laundry or whatever than have something I COULD NOT CHANGE used against me. It is one of the hardest things someone has ever told me. Since then however a friend of mine i have known for years turned her back on me with the simple words of, “i can’t watch you die anymore.” I thought to myself,  Must be nice to be able to leave?! Wish i could do that!!!!! What I have learned from these experiences is that I need to always listen to myself and not do things on a “feeling.” Love is so much more than just a “feeling.” To me Love is holding hands through the good and bad, standing strong together no matter what life drops at your front door.

I hope that with my story, it helps those of you going through the same thing. It is hard and it will hurt, it will feel like nothing will ever get better and that all people will do this to you. You will feel betrayed. You will feel very insecure, you will feel lost and sometimes hopeless but all this will pass. The important thing is YOUR health and the truth is the more we let the negativity into our lives the more stress we put on our body that is already in a weakened state.  So mourn the death of someone who wasn’t meant to stay on your path and then pick yourself up and take care of YOU. It really is their loss. I will be honest it took awhile for me to realize that but I am better than he will ever be. Some people are narcissistic and have no respect for anyone but themselves. Let them GO. Just remember we are STRONG. Many people could not take the pain, agony, frustration, daily fear that WE fight EVERY DAY. Not to mention all the scary meds, diet changes etc! You can do this! Don’t let someone else steal what time you have, it is precious. There IS a reason for everything, we may not know the answer now but someday we will. Be patient and above all love YOURSELF.

 

Articles on this topic:

http://www.medicalnewstoday.com/articles/290583.php

https://migraineagain.com/why-men-leave-sick-wives-facing-illness-alone-couples-and-cancer/

http://www.nbcnews.com/id/33832513/ns/health-cancer/t/men-more-likely-leave-spouse-who-has-cancer/#.WOXQqYgrKUk

http://itheedread.jezebel.com/great-news-divorce-is-more-likely-when-wives-get-sick-1689474974

http://www.oprah.com/relationships/why-men-leave-sick-wives-facing-illness-alone-couples-and-cancer

http://www.dailymail.co.uk/health/article-2076273/The-men-walk-wives-ill.html

 

Speak the TRUTH

 

This wednesday will be 4 weeks since surgery 21 and today was the first day, i can actually say i felt a LITTLE more like myself. I am still having pain around the pain pump which i guess is normal as it can take 8-10 weeks to fully heal. My spinal headache is ALMOST gone, i am praying in a couple days it will be ALL gone which will be the best blessinge EVER.  I think at this point I can actually give a 4 week pain pump review, however I would check back here a month when i give another update.

Many people have been asking how big the pump is, how much meds it holds etc, so here is the information off of the MEDTRONICS website….

INDICATIONS AND CONTRAINDICATIONS

INDICATIONS

UNITED STATES:

  • Chronic infusion of Lioresal®Intrathecal (baclofen injection) for the management of severe spasticity of spinal or cerebral origin
  • Chronic intrathecal or epidural infusion of Infumorph®(preservative-free morphine sulfate sterile solution) for chronic, intractable pain of malignant and/or non-malignant origin
  • Chronic intrathecal infusion of Prialt®(preservative-free ziconotide sterile solution) for the management of severe chronic pain
  • Chronic intravascular infusion of Floxuridine®(FUDR) or methotrexate for the treatment of primary or metastatic cancer

 

Battery Life 4-7 years
Radiopaque Identifier NGP
Thickness 19.5 mm (0.78 in)
Weight (empty/full) 165/185 g (5.8/6.5 oz)
Height 19.5 mm (0.78 in)
Displacement Volume 91 mL
Diameter 87.5 mm (3.4 in)
Material Titanium
Capacity 20.0 mL
Residual Volume 1.4 mL max
Minimal Flow Rate .048 mL/day
Pump Internal Fluid Path Volume 0.199 – 0.289 mL
Silicone Septum Puncture Life 500 punctures
Bacterial Retentive Filter 0.22 micron
Prime Volume – Catheter Access Port (CAP) 0.14 mL max

It is about the size of a hockey puck and looks like this:

(epainassist.com)

And just in case you missed all my surgery pics, here they are:

While in Hospital

Two Days and Now home

3 1/2 weeks

 

First Pain Pump Refill Last week (they do not give you any numbing meds, the Dr sticks a very long needle into your skin, into your pump and refills it) I will have to do this every 2-3 months…YUCK (enter sad face here)

Now for the almost 4 week review….If you are planning on having this ask your Dr all the questions BEFORE surgery and do your OWN research. I even think you should talk to someone who has gone through it. For me this has been BY FAR the most painful experience I have ever gone through, and I have had 20 orhter surgeries

The first week after surgery all i wanted to do was die. Due to a puncture in my spine i had/still have what is called a spinal headache(read about them, they are beyond painful.) I had severe shoulder and back pain. I had trouble doing simple things like walking and going pee. It was awful. I do not think i have ever screamed for days straight. The Dr tried upping my pain pump during this week and even gave me other pain meds but NOTHING worked. I prayed for God to take me or help me. Finally and I do mean finally about 2 weeks into it , my body pain began to get under control and boy was i grateful. As i said earlier i am still dealing with my spinal headache but i believe it is on its way out! Woo hoo

I can TODAY almost 4 weeks after surgery say that my “regular pain” that we were managing with high doses of pain patches and pills is now under control with the pain pump. However this does not mean that i recommend it to anyone as of yet. I am no where out of the woods yet, shit can happen at anytime and I will not really know how i am going to feel about everything until i am completely healed. In the meantime if you have questions please feel free to ask me. I will keep everyone updated on my pain pump as i feel.

Last week we added back in my chemo and biologic meds, and i think all we are doing at this point is playing..catch up since i missed 3 weeks of meds. UGG

I forgot how much my disease rips through my body off of chemo meds and biologics. Speaking of this….I know I have talked about this before but I have been really researching letting God take over my health. I am so tired of these poisons. these poison meds are not only killing the bad cells but any good ones I might have too. So if I do decide to stop it all just respect my wishes. Do not tell me what the Dr’s say, “the disease will take over and you will die sooner.” I know what my options are and I do not need any ones opinions. Besides 16 years ago my liver specialist said i had 7 years to live……Still kicking bitches #mylife

 (I stole this from a friends Instagram because it tells my truth!)

Today physically I feel stronger that I did 3 weeks ago, it amazes me how much our physical bodies can go through. Not to mention how strong we can be mentally through all this horrible stuff, since being diagnosed this HAS been my nightmare that never ends. The only difference between diagnose day and today is that i know every-week i keep slaying the demons in my nightmares, as long as God is by my side, I am never going to give up. I am brave, ALL OF US SPOONIES ARE!!!!

I was super excited to get my Dr to release me back to work with restrictions of course……I think the boys missed me………#blessedtohaveawesomecoworkers

Today was my second day back and even though I am still in pain and I am exhausted….it felt amazing to be OUT of the house and around people who make me feel good.

I also started back to my regular routine of doing some Gun pics for a few local photographers. You can’t see in this picture but I did my chemo and biologic meds 24 hours before this shot. Sometimes You have to PUSH through so the disease and or meds do not run your entire life!

While I am up and writing, I want to just say thanks to those of you who have changed your schedules to help us out. I am super grateful. If this disease has taught me one thing, it is that life is short so love one another and treat others as you want to be treated! So thank You. I will no longer waste my time on people “i think” care but who are all talk. I should have learned my lesson years ago when the master of “all talk” was in my life.  I might be broken, but i deserve the same respect, love and adoration any whole person deserves. I have the same feelings as anyone else. I feel love, pain, deceit, jealousy, etc as anyone else. I am human just like you. As I have written before the statistics of people who are sick like myself are left on their own to deal with it themselves more than any other reason why someone would leave another. Suicide is also huge with chronic/terminal illness. I have read that over 50% of people with chronic illness think about suicide. I COMPLETELY UNDERSTAND THIS! It is not fun, and in my case my disease is eating my organs which is painful and then the meds make sick…it is a NO WIN situation. It is a very hard life and sometimes you feel lonely no matter who is around. So you can imagine how much harder it is when people say they will be there for you and then do the opposite. If you read the “all about me” section, I give a readers digest version of how someone said they would be there and then they turned my entire world completely upside down. When stuff like this happens you never want to trust again, you never want to let someone in, you want to keep everyone at arms length. Outside of my shit health, it is people who do this that I despise.  I DID NOT CHOOSE to be sick. I did not wake up someday and say, “Hey legs, just work sometimes, skin fall off, kidneys bleed, intestines/stomach stop working, cells kill my organs, and while my body is killing me, i think I want people I love and trust to leave me.” Yes I might be broken but the best part of me IS whole, the way I love people.  So Do NOT waste MY TIME, If you say you are going to do something, do it! Make me a priority or don’t, it is your lose, not mine. Tell People the truth even when it hurts, say what you need to say even if you do not get the response you are looking for.   I might still be around, so you might think it is ok how you treat me but while you are doing your thing, I might be planning a new life with you not in it. The world is FULL of people…….AND  Life is short. Love one another broken or whole, in the end it is ALL the same! memories are memories!!!!!

No matter what my body does to try and kill me or how others treat me, i will always be Me and that is something no one can EVER take away!!!