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!!!