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!!!

 

The Mask

 

I absolutely LOVE this photo I found online. This explains how I feel for sure! I am not going to speak for anyone but myself, even though I know, it this how many people with terminal/chronic diseases feel. No matter what we are going through whether it is a surgery/Dr visits/chemo meds/biologic meds/ etc we get so good at wearing a mask when outside our home.  I sometimes forget I am wearing mine until some one reminds me to take it off.

I wear my mask for a few reasons…

1.  I am in so much pain, and I don’t want people to see that because I would hear more of, “i get it.” When you don’t unless of course you are also sick.

2. Every time i have shown my vulnerability someone has given me reason to run and hide. Some people have been very selfish and mean, when they could have handled things differently…….I have learned to keep to myself because in the end…it is ME, taking care of me.

3. Even though I have accepted that there is NO cure and I will have to do weekly chemo and biologics till I die, others do not understand this and harp on me that MAYBE someday they will find a cure. Look I know you are just being kind and positive but it IS NOT YOU going through this. You are not doing weekly meds that make you so fucking sick that you would rather die than do it the following week. Your hair is not falling out, your skin peeling, you on bed rest 5 days a week….etc

It is so much easier to fake a smile, push through my fatigue(not the same as being tired), force my body to do stuff i know i will pay for later and say ‘I am Fine,” when asked how I am feeling.

 

This is why I wear a MASK….Why do you wear yours?

***Disclaimer*** I am also aware that many people wear masks, not just the sick…….Just remember to take it off occasionally 😉  WE ARE NOT OUR MASKS

I will be doing a surgery Update later in the week, right now…i am just in misery…..praying this gets easier….after all the Dr’s are just trying to make me more “comfortable.” If that even exists lol

 

 

Through a patients eyes…MINE

FIRST OFF….I want everyone who does read this to read this with OPEN eyes. This is my website, my thoughts, my life. If for some reason I offend you….click the X on the top of this page….and FUCKING leave…..

 

 

March 8th at 7am I was prepped for surgery #21 and I had high hopes. Now do not get me wrong I was terrified because any surgery hurts but when you have an autoimmune disease on top of surgery…things take a LOT longer to heal and I personally experience more pain. I thought I was prepared for this Spine Pain Pump. I asked my Dr on numerous times many questions and I believed his answers. Not only that this was the first time I stayed away from “Internet”  information band wagon….normally I do mad research but sometimes research does more harm than anything. The truth is I now regret not doing the research I should have. This so FAR as been a fucking nightmare…….

First off, the Dr did not wean me off my original meds just let my body go from one to another, so withdrawals from my patch were awful. I was praying for death 6 hours later.  Can you imagine surgery pain, my autoimmune pain and withdrawal pain ALL AT ONCE????? If it was not for my night nurse who i forced to call the Dr who ended up giving me some other meds, i would have jumped from the hospital window. I was feeling alone and out of options. By Thursday Morning I  was in so much pain that the Dr had to redo my pump meds which was not fun for me because instead of the Dr bringing the required equipment, he forgot them and I had to travel to his office in Sparks. That was a ride from hell. If you have no idea what a spinal headache feels like, look it up and you will get a quick idea.

Today is March 19th and I am still struggling with pain and a spinal headache. As luck would have it, the Dr pierced my spinal fluid and left a hole causing a whole bunch of misery. I have had a migraine now for 11 days and it feels as if someone is smashing my head in. I can’t hear out of my right ear and I have an infection. Every light and sound irritates me. I started internally Bleeding this past Tuesday. and my autoimmune disease went into full affect on Wednesday. The Dr also made a mess of my skin.  See below graphic pictures.  In fact nothing the Dr told me a head of time was true. I now feel like I was just a $$$bag.  This by far has been the worst surgery EVER.  I have screamed from some surgery’s, however this screaming lasted 6 days. I have never experienced this kind of pain ever. And this week should be a whole lotta fun as i go back onto the crap chemo meds and biologic…But we will talk about chemo meds next post….so stay tuned

Now with all this said, I can now only pray that my pump does NOT become a problem. I pray once I am healed in the next few months, that this titanium pump does its intended job and not cause any issues I am now learning about. Like 1 in 20 people  with this pump will die. HUH 1 in 20..that is some scary odds. It is because some of the pumps become faulty, cook you inside out, some Dr’s miss the refilling hole and OD you, other pumps become moved/ripped out of your skin due to movement etc.  Just 8 months ago the FDA shut down the company that makes my pump….GEEZ

You can clearly see the loss of color/suffering  between before and after hospital pics

 

This is very scary, so please keep us all in your prayers and thoughts, only GOD knows what our plan is. I will do an update every month in regards to this titanium pump, you can bet on that! Good or bad I will tell you all what this is like.

Maybe for once in MY life, all this havoc will be for something GOOD~?!

I WOULD like to thank those of you who took out time to do things for myself and or my family! I know people have their own lives and their own stuff going on however I made the mistake of thinking that because we belong to certain “groups” that we would have a little support. What is the point of being part of a “family” if not to be with each other through the good and bad times? Apparently not everyone sees this how we do. I have learned lot these last 2 weeks; let’s just say my EYES are wide OPEN. Huge thanks to my RGR family! Belle, I love your strength and fight that you bring and I love my Eyore. Kim, you are a damn good cook and my family has been spoiled these last two weeks because of your compassion and love.  Thanks Scott who took a moment away from his serious situation to check on me!  It was so good to see you ;-} Thank you my BFF Rhonda for the box of goodies… The only thing better than that would’ve been you here! I love you so much!! Thank YOU Thank you I also want to thank those few of you who emailed, texted and Facebooked your well wishes! I do appreciate it!  Now that I know where I stand with people, I will definitely always be there for those that have been there for me when I can.  To others, I just want you gone…nothing more, nothing less. It is what is….. Especially to the ones who texted me months before hand saying you would be here for us and then chose not to for whatever reason….we don’t need you…but I am begging you to NEVER make promises like that again for obvious reasons. I honestly did not plan on Brian taking on the most of this surgery shit,  screaming/bathing me/Dr calling/medicine picking up/cooking etc. However I am super grateful to Brian for going above and beyond. It was hard when Brian had to go back to work and I was left on my own this past week, left alone crying/crawling down the hallway just to use the bathroom. Screaming in my sleep, praying the pain would leave.  This has been my last 11 days…..I pray tomorrow there is SOME change because I DO NOT want to continue on this path! Do you ever feel like your are giving your all to something but NOTHING is happening…this is how i feel. I just want the pain and misery to LEAVE me ALONE!!! I NEED to know if this will surgery/pain/misery has been worth it or not.

This picture sums up how I feel

 

A little note to my spoonie fam…..

Trust NO ONE but yourself, Do research no matter who tells you to stop doing it(as in my case), listen to your GUT, do what you want not what the Dr’s/family/friends want. We need to stand up for our rights, our needs, our health.  It IS our life after all. I am amazed by our continued strength and courage .In the hospital I was reminded by someone why I should keep fighting to live, and even more recently I saw another Spoonie fighting for her life and it kicked my butt into gear! So keep FIGHTING …You never know who is watching and being encouraged BY YOU 🙂 Prayers and Love Always….