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….

 

Starting 2017 with a BANG

Hi Everyone! I hope you all have had a better start to the New Year than I. So far I have managed to internally bleed more days than not, puke more than I eat, feel like I have the FLU times 10 and spend more time in bed than anyone EVER wants too(and not for anything fun). UGGG

Autoimmune diseases suck as do the MEDS we take to keep the disease at Bay(whatever that means)

However I was able to get out of the house a few times and visit with a photographer who is interested in doing s project with me.  I am super excited to see what comes of this.

I also was able to make it to work a few days this month! woohoo!!

You need to find your Happy, even when you feel like death….Laugh when you can’t find your strength….act like a child if nothing else works 😉

I also was able to ride on our first HOG family 2017 ride where i literally froze my ass off. We rode over 200miles in 39degree weather. BRRR

I did have a lot of fun though. 🙂

To be honest this past month was probably one of the hardest months. When i can’t stand or walk due to complete weakness and I find myself crawling to the bathroom to puke, everything just feels so helpless. It is times like this when i can’t help but to think about death and wonder if my time is coming around the corner….

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I mean how sick do you have to be, for God to take you? I get so tired of struggling, tired of the intense pain, tired of the needles of poison, tired of the Dr’s, tired of crying, tired of faking the smiles, tired of the FIGHT. My body has been a complete ass lately and I am having a hard time finding my way back to what faith I usually hold on too. I feel so alone, and it is so hard to express what my body is doing to me and how it makes me feel, especially when the pictures above is what others see. When most days i look like this especially after taking all these SHIT meds…

***remember autoimmune diseases are INSIDE us…so it doesn’t matter what you see on the outside ;-)THANKS

Next month is surgery #21 and I pray that it gives me some relief. This surgery has me concerned because they are cutting into my spine and stomach. What could possibly go wrong right? Ha! Let me tell you the many ways 😉

Anyways I am still recuperating from the hell my body has been causing lately but wanted to give a quick update, I know how grumpy many of you get when i don’t update.

Please be kind to those you love…….and even ones you don’t….you never know what a stranger may be going through……a special spoonie friend of mine reminded me recently that when the “norms” just do NOT get it…..other spoonies (sick people) DO GET IT. SO……to you other spoonies going through the HELL too….remember even when you feel alone…..you really are not……..

********If this is the case…my Dream must be really FUCKING BIG!!! HAHAHAHA

If all else fails…..go buy some dye and have one hell of fucking good time….In my case, it is falling out anyway…

Hugs and Love to you all.!!!! Thank you to those of you who continually support me. To fellow spoonies, keep fighting!

This post brought to you by my beautiful adopted babies….Cute HUH?!

P.S Some have asked what I need before and after surgery. I still need warm socks, lap blankets and I am raising money to buy another Leachco Pillow which keeps my bones from touching when i sleep and or lay down.And above all, PLEASE do not forget to PRAY and send positive vibes my way..MUAH I appreciate all everyone has done for me. XOXOXOXO

Another Year in the BOOKS!

If you are reading this…Guess what you made it another year too! Ya Baby!

I hope you all had a wonderful Christmas/New year. I did not do much because, i just was not in the “Holiday mood” and I have not been feeling all that well. However I was able to have a great Christmas Dinner with great Friends, I call family!

When i hear people talking about all they are going to do or not do in the new year, i always giggle a little, because truth is, most people never follow through on their “new years goals.” So i suggest you just LIVE, quit wasting time planning on what you will or will not do. In my opinion it is just a waste of time. Time is short, in case you forgot. So Do what you can in the MOMENT, AND be PROUD! Take it day by day! Do NOT get hard on yourself!

I will get into my health stuff in a moment, but first i want to talk about something that has been on my mind lately.

Many people I care a lot about have been going through a tough time in their relationships, meaning many divorces and or breakups. I know this is HARD however NOW you need to take TIME to love YOURSELF!!!! When you LOVE YOU, others will LOVE YOU! I promise you this!!! Take time for you….STOP dating girl after girl, guy after guy….You will NOT find the right person dating every tom or nancy.  It is SO GOOD to spend time Alone.  Being alone is good for you.

I love this saying…..

 “you cannot possibly have a healthy relationship with others if you haven’t learned to have a healthy relationship with yourself.” -Abigail Brenner M.D.

Ok MOVING on……

So far this month has been rough, i am back to internal bleeding…which is a fucking blast..NOT 😉 I would put up pics, but just trust me on this one . Ha!

Surgery will be happening in a couple weeks. I will keep everyone in the loop. As usual I appreciate all the support and love! Spoonies, keep up the great work, NEVER give up. Tomorrow is ALWAYS another day.  Just when I think I can’t make it another day, I wake up for another day. Heck I even made it to work a few days this year so far,  changed MY OWN damn Headlights ( DO NOT tell me girls can’t find their way around a car ) GRRRRR and I even went and played in the snow…(ok well not played, but I was out in the snow..

Take NOTHING for granted! Let those who want to, love you and move ON from those who DO NOT. Be Kind, help those in need. Most of all, remember EVERYONE is going through something! A special note to 2 very awesome Spoonies, Belle and Cheryl…..Keep fighting the great FIGHT! I swear we THREE were Sheildmaidens in another life! This is for YOU two…..Love you guys……..

 

Kisses xoxo

 

This Post dedicated to 2 Special Loves I lost in 2016, Haussen Conway who loved  me more than anyone ever could and Larry Booth. who was an amazing mentor and friend, who ALWAYS pushed me to NEVER give up. You both will be missed very much, do not get to comfortable with out me, because I will be on my way before to long.

-He will wipe every tear from their eyes. There will be no more death’[a]or mourning or crying or pain, for the old order of things has passed away.” -Revelations 21:4

Enter Fake Smile here

Every time I stop by to visit my grandma’s house,she is always in the same chair,  looking out the window. She tells me she watches as the cars go by, sometimes she counts every individual  car, and sometimes she counts them by color. This is her life now, ever since my grandfather passed away 9 years ago. She is lonely, she is sad. This is exactly is see myself anymore with exception of losing my forever partner. We both now just watch as life passes us by.  Sometimes I go just to sit with her, because I want her to know she is NOT alone. I may not be able to be with her every waking second but when I can, i am with her. Feeling alone is one of the worst feelings ever, I love her more than words, so i SHOW her when I can just by sitting with her.  It is that easy people.

Today i went and spoke with a group of people who are dealing with some kind of disaster in their life whether it be health, death in the family or whatever.  I was amazed on how much we all had in common. I feel dead, my health especially this year has kicked my ass more than i could ever explain. I still have people pushing me away…i guess I should finally let Mr.R off the hook. He is not the only who is good at shoving the sick girl in the closet and bringing her out just when he needs something. I have hated him for so long and have been carrying around this anger towards him because i wanted to believe that he was the only bad man in my life who makes me feel this way. But i am wrong. I look around now and I have the same life just different players.  Everyone is always doing something else, making  goals, living life.. doing what ever it is they need to do and then for just a second they realize Oh shit Kari…and they throw me a rope and pull me along, only to drop me again.  I am not really a part of much, even when I put my all into something it never seems to be enough. No matter how much I love, i do not get it back like I give.

Tonight I had to explain How I feel…this is what i said

I feel that once i became sick,   everyone that I CHOSE to have in my life covered me in plastic bags and suffocated me, in hopes that I would quietly go away, so they would not have to take care me, pity me, drag me along, make them feel sick, complain about how we do nothing due to my health, blame my health for all the bad in the world etc.

Then a group member asked me what I miss the  most about my self.  This question really made  me think, because all i have known for the last 20 years is sickness. But after a few minutes i realized I miss the Kari that used to make people smile. I love writing letters, I love helping the less fortunate, i love doing special things for those I love, leaving notes, cards, etc. I love making people feel special. In the end it is memories we leave people..nothing more.

The same person said, why have you stopped? Now this was easy for me to answer, i stopped because people stopped making me feel loved, so in return i stopped. Why should i waste my time on people who do not love me?

I can not tell you all how eye opening tonight was. My health has destroyed more than my “physical” body. I have let it eat my thoughts, my emotions. I have allowed people into my life that could care less because I thought because of my health, i was less of a person. I know it did not start this way, it is just how people started to treating me the sicker I got( i was even told that no one would love me due to my health, so i should just settle) and i just let it continue. I LET IT CONTINUE. I let people poison me, like doing all these Chemo, biologic’s, pain meds etc were not enough poison?!

Now I sit here frustrated. The only BAD i need in my life is my health…NOTHING more….

It is so amazing how many of us sick or not, allow others to control our emotions.  How many of us are guilty of this? And then when I am completely lost and caught up in all the negative, i look around and i feel even more alone. People tell me all the time, you are not alone, give us a call, text etc…   I am not going to call anyone out on this, because maybe it was an oversight, you were busy etc. We are all human, we all make mistakes. But because of the way I feel right now…i really want to open a 24/7 hotline for spoonies. Not that anyone else isn’t important, it is just because we have a lot more on our plates than the average person. Suicide is huge. Just today i was reading some statistics, on the average 42, 000 people commit suicide each year, more than half are people like myself. They have chronic disease, chronic pain etc.  Another article said that chronic pain patients are twice as likely to commit suicide than others.  SO WHY are we not helping each other by reaching out, answering the phone, text etc? And why are YOU (the person in our lives hurting us) in our lives? If you can’t deal with it, get out, let someone who can deal with our health be in OUR lives. There is NOTHING more painful in MY opinion than having someone say I love you and then abandon me When i need them the most. Can you for one moment see it from our side? You the person who is trying to help us/take care of us, You get to escape. You get to leave, you do not get any of the medicine side effects, it is not your body being cut into all the time. It not you bleeding out everywhere and then having to clean up afterwards. It is US. And trust me, i am not speaking for anyone else, but i do think about my friends and family who are around occasionally. I know it must suck watching me scream all the time in pain and you can’t help. It must be awful being so helpless. But you had a choice, so if you want to be a part of it, be a part of it, just not when you want too but all the time. Or you can be like others who just walked away and gave me personally the, “i can’t watch you die.” “you are too sick for me” BULLSHIT.

Hear ME NOW. Decide soon, because I am no longer going to be abused, because that IS what it IS, you may not be punching me but you are emotionally abusing me. I am DONE. My health will be the only bad in my life! I am going to make it so. I deserve so much more than I get. I deserve to be happy those few minutes a day, that my body gives me. LOL I deserve to be shown love, I deserve to be special, because I AM.  Many of you have no idea what life I live, because you only see me once in awhile..let me tell you, it is so easy to Fake a smile. I do it all the time because If I didn’t you would all just feel sorry for me. Truth is I, like many others are suffering 24/7. We never get to escape from our hell. But that does not mean, we deserve to be nothing, or treated like 2nd place, or she/he will do for now. I encourage you as you make your “new years resolutions” to make important changes in your life. To me character is so much more important than looking like Barbie.  Reach out to others who are suffering, it does Not just have to be me. Even I reach out to other spoonies, because even though i am feeling intense pain and i feel hopeless, i know they are too….and they need me, just like someone might need YOU.

You can either make me a part of your life or get the FUCK off my Path before I push you OFF.

This is my TRUTH

 

Spoonie October, A Turkey Holiday and ME

It was a Spoonie October

I spent most of October feeling awful. My meds have been doubled and tripled making my body feel crappy from my feet to my head.

However I was able to go on a few HOG rides, the Apple Hill ride and the Monthly HOG dinner ride. I also decided to take over the LOH Officer position(after much force from others HA!) in our local HOG chapter. I hope that I will be able to have some Fun with this new challenge this coming year.

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I also was able to cook dinner for our local veteran’s house which I really enjoyed and have decided to make a monthly thing. It is the least I can do for the people who have put their lives on the front line for mine. Please reach out to your local Veteran’s house and see what YOU can do!img_0369

My BFF Rhonda flew in for a couple days which really put a huge smile on my face. She always reminds me of how much I still have to live for. While she was here, I skipped my regular meds, so that I could be awake and spend some quality time with her. I am so blessed that i was able to go out and take some beautiful pictures. We also were able to catch up, it was a nice visit. I absolutely LOVE that i have such an amazing REAL friend like her. Guess how long we have known each other?! Here is an old photo of us….fullsizerender

We still look Good!!!!!!!!!!!!!!!!!!!!!!!img_0458img_0500 I love you so much Rhonda! True friends that stick around through it ALL….are no longer friends BUT FAMILY! After she goes back home, i always find these notes….EVERYWHERE! img_0655  She reminds me that I am never ALONE!!! I hope you all have a Rhonda in your life!

We also did pumpkins..I mean who doesn’t???

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October was also filled with crap Dr appts where I had to roll the dice……b189b4b4-fdcf-45c9-9de7-f79b01d79977 The dice is the Drug testing system, many Dr offices is going to. I just laugh, cause I only use my meds….no one else’s…..so the dice GOT NOTHING ON ME! BOOM! However doing double chemo meds and biologic’s really suck!img_0197  Mean swollen belly days…..img_1004 By the way this is what Gastroparesis looks like when it flares…  *yes it fucking hurts*

Lucky for you ALL, I survived October and so far have been able to do a few things this November….

I drove to San Francisco and spent some time with my cousins and then went to another AWESOME Tyrone Wells concert. It is always a great day when i am able to see Tyrone! He inspires me to continue on this path…even when all i want to do is jump off it. He even made me cry by dedicating the song, “more” to me. I am truly blessed!  Thanks Tyrone for all you do, you truly are a part of my family! What a friendship we have!img_0957fullsizerender-1 Keeping entertained between acts, at this point i was in so much pain that i could not breathe, so instead of cry, i made funny faces….it takes the same energy….i mind as well use my energy(spoons) in a good way!img_0927If you ever get a chance to see Tyrone, do IT!!!! He will change your life!

I also have been able to work a few days here and there….it has been so nice to get out of bed a little!img_0991img_0972

We also were able to have Thanksgiving dinner with some very special people, who I am blessed to call family…because the word Friend does NOT express what they mean to ME. I even made some yummy potatoes and some delicious pies! Just being able to cook/bake a little this Holiday season make me sooooo Happy! Fuck you body…..I am the boss! img_1012

I was so busy having such a great time at the Thanksgiving Dinner that i took zero pics however Jim took one, so i will just show the picture he took. In this photo we are modeling the wreath I made him and his kids for Christmas! Fuck you Grinch! Ha!!!!!!!!!!!

fullsizerender-4 Jim’s Mom Jeannie is someone I call Mom, so we were super grateful to be a part of her family this Holiday season! God has brought so many great people into my life and i am so grateful. I hope you all remember to be grateful and positive even when you feel like you can not go on.  This year has been extremely tough, so much that I have not blogged as much as last year but this is what happens when your  body is killing you slowly…..you have less and less energy……you really learn to live second by second. This quote  below really says it ALL……the sicker I get the more i remember moments and not days….If I were to just think about days, i would be depressed because ALL my days are filled with severe pain….

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Truth is it takes A lot for me to smile some days, be kind, get up and do things. I feel like a burden to others, I sometimes pray for God to hurry up and take me. Being in pain is so awful, I can’t even begin to explain a way for others to understand who feel no pain/regular pain(headache etc).And then when i get a small  break from pain(meaning on a pain scale it is about a 5)my body is so tired from fighting from within that I just sleep. I can’t seem to win. I often look around and watch as life passes me by. I feel like I am living someone else’s life and wish someone could just pick me up and run away with me. (like this would cure me) NOT! I want so desperately to live a different life where pain does NOT exist…..and have normal problems…….you know things healthy people take for granted…..I want to live in a world where people love ME unconditionally, and not take anything for granted. If you are reading this and have no health issues…take a moment and thank God for being healthy….thank your legs for not hurting when you walk or run, thank your hands for working, thank your body for running a normal temp and not being super hot or super cold, thank your nerves for not screaming in pain 24/7, thank your belly for allowing any kind of food in it, I THINK YOU GET THE POINT.   Just give thanks for what you have!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I thank God every morning for a warm shower that takes my mind off my pain for 20  minutes,  for mouth rinse that comforts my bone in my jaw line that is breaking, for clothes that hid every surgery scar, for a job where people work with my health, a  few close friends/family I trust,  for loving adopted pets who comfort me when i am screaming in pain………MOST IMPORTANTLY

 

whether I am feeling like this….img_0712

OR like this…img_0835Just know that I am fighting everyday for another day, …….We all are….Hang in there fellow spoonies and above all NEVER GIVE UP……God has a purpose for us all!

HEALTH UPDATES

So I have a HUGE 5 hour 21st surgery coming up, I am super terrified….sometimes I wonder when God will call my name….How much more do I have to go through?! Anyways once i get the date set, I will keep you all posted. In the meantime please pray for me to be ready for this surgery. I keep postponing it. 🙁 For some reason i am terrified more than usual, I think it is because my 19th surgery was supposed to be routine however I woke up to a cut vagus nerve….which caused the gastroparesis….sigh……Truth is I am just really scared….my body is done…I mean surgery 21????? How much can my already weak body take?    I am still doing a double dose of chemo meds every week and biologic’s. PUKE  PUKE PUKE PUKE! Also i am looking into seeing a specialist in California because I do not like my care here In Nevada…and I know our care is up to us.   So that is  the health scoop……keep praying…keep fighting…..keep spreading knowledge about chronic/invisible diseases. Most of all….KNOW that OUR disease DOES NOT define who we are…Lots of love.

Kari 

 

 

Coming soon Rocki  the spooniecat🐾 & Healing Sediments

I just want to let everybody know that two months ago we adopted a cat who had a 5% survival rate.  He has become the light of my life and he is such an amazing animal & is a hero in my eye for battling panleukemia. However for having it as long as he did he suffered some brain damage which makes him have tremors and he walk sideways. But I love this guy with all I have & i  love having another spoonie in the house! Coming soon I will have a page up where I hope that you all will post your animals who help support you and love you unconditionally. Also coming soon we will be taking applications for “Healing Sediments.” Healing sediments sends fun treat bags to spoonies  having a hard time whether that be in the hospital and or at home. Our goal is to send 2 to 5 bags a month. We will also be doing a chronic illness pen  pal  program that you can sign up for any time. Please send us an email healingsediments@gmail.com if you are interested in signing up for the pen pal program. You can write letters, send post cards etc!! I think it’s important that we all encourage each other to never give up, we are not alone! Also a new post will be out here shortly, stay tuned💋