July Fun and Emptyness

I was going to start off this post with..Sorry it has taken so long but screw that….i have been super busy and not feeling the greatest and therefore have been unable to post as much as i would like….

So July has been busy as i said before and for some that might sound great however what BUSY means to me, is i had to PUSH myself again and again to do what needed to be done.  July started off with some fun Harley Rides with our HOG family.  For the 4th we all headed up to Grants Pass Oregon to have some fun on the Hellgate Jetboats. If you have NOT been….GO..Get up and GO NOW. I had the time of my life. It was a lot of fun and the food was pretty good too.

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From there we went on a little outing and then traveled down to Dunsmuir Ca. and stayed in trains…yes trains..here is the caboose we stayed in for the night. IMG_9241

On our way home we even saw BIGFOOT!

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This truly was an amazing 4 days! Best part though was riding up with Ma and Cindy 😉 13516269_723041491169775_6513617819692027838_n ***We had a LOT of FUN***

 

I am so glad my body only hassled me a few times on this trip, because it was so worth it!

The following week, i struggled a little because i knew i had to get back to some of the meds, i skipped in order to travel.  Skipping meds is Not always the best solution but i had to do it or i would have been even more miserable than i already was. So while i skipped a few meds, i had my birthday present done….

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This is probably my favorite tattoo yet, because it means so much to me. Those of you who know about my friend Tyrone Wells, will understand the meaning of, “this is beautiful.”  But just in case you don’t understand, Life is what you make it……hence “this is beautiful.”  When you are a “spoonie” things are not always “beautiful” but i know each and every one of us continues to fight everyday in hopes for at least a few beautiful days. It is a reminder for myself to never give up. Lately I have felt this intense emptiness, i feel like i have very little fight in me anymore. I am just exhausted. Tired of trying to keep up with everyone else’s expectations. Tired of being left out of plans. Being overtalked, mistreated because some people are fools!  Tired of being the SICK ONE. Because more often than not, that is exactly how i am treated…..i am the sick one so don’t ask her to come, she will say NO. Don’t ask her to go because she will not be able to stay long. Don’t include Kari in the plans, she doesn’t really have to be a part of this, i will plan this for her (like i am a child.) Take away Kari’s stuff, she will not miss it, she is the sick one. ETC

I just want to scream at people sometimes, i want that 20 year old me to jump out sometimes and say NO this is NOT how you treat ME!!!! But then i just exhale and pretend the situation didn’t happen. Ha! Pretend…..I bet all the Spoonies are laughing…as this is a word we all know to well.  Sad Huh?!  Pretend to feel well, pretend to not hear the comments, pretend that we are not hurting emotionally from all the different ways people treat us, pretend to be happy, pretend the Dr’s have our best interest etc

Speaking of people being mean….So a few months back we signed up for a gun class that i personally was excited about for 2 reasons:

  1. Rob Pincus would be teaching it
  2.  I love learning new ways to protect myself and others and it is just a good learning experience all around.

So with that said, we signed up and i went on my merry way. well over the course of a month or two some snickering got back to me, as it always does. Kari can’t do that class it will be to physical for her and she will make a fool of herself. etc

Well here is to all you people who like to use my health against me or just plain DID not believe in ME….

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I DID THE  2 DAY 500 rounds DAMN class. EVEN though i wanted to quit, NOT because i could NOT do it but because i did CHEMO meds the night before and i was exhausted. I may not have been perfect because this little trigger finger of mine 😉 But i didn’t give up and i learned so much. I learned some new techniques, i learned what i need to work on and i learned that i can DO anything i want to DO no matter what “standards” you might have of me. I am proud of myself and you who thought i couldn’t do it and who is still talking behind my back…know this…..you are in no way perfect either and i did what you did. Oh and obviously you can NOT trust whoever you are talking to because it got back to ME HA!

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I have no idea who wrote this saying but i LOVE IT. AND i find it very fitting.

Ok on to other things…

I am hoping some of you will find this funny…while i was at the Dr’s i found this picture and it made me giggle.

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OMGoodness how true this is!

Finally i just want to say that i am so tired of all the evil in this world. Just when you think there is enough evil in the world something else happens. I don’t know how anyone else see’s the world right now but for me it is awful. I want to LIVE so bad, i want to have a healthy body more than anything so i can get back to what i was doing before i got sick..which was living. And then i turn on the news, read the paper etc and the world is just turning to shit because of a few bad apples. I just shake my head because i don’t understand how one can be so evil and take so many lives. When all i want to do i live a normal life. ( i know there is sickness, craziness etc) but what a waste of a life. I pray for all the lives who have been lost…ALL LIVES who have been lost.

You don’t have to be sick to die. Life is short people! Get out and live it, don’t waste quality time on Bullshit, being treated like shit, talking smack, making fun, being mean. Get out and live! Be kind, love one another etc. Put away your fucking phones! Show us what matters most. Remember actions speak louder than words! If your not spending quality time showing your loved ones love..someone else might. 

So as you can see this month has been BUSY and the month is not even over. I hope the rest of July goes a little slower as i need to recoup some spoons.

With that said, here is what is new with my health….

I am back to a mix of meds;  Biologics and chemo meds because my health is just getting worse, my numbers are not changing like one would hope. I am also have a few other health issues but nothing i really want to freak you all out with. :-] I will be having a trial surgery for a pain pump in September (the 16)and if all goes well, the following week a permanent one will be placed in my belly and spine. So please pray for fast recovery or at least a good recovery.  If anyone can help on these days please let me know as i have little to no support. i would be grateful for the help.  I still have a few Dr appts this coming week and i pray the Dr’s listen because it is TIME for them to listen, i am DONE with feeling NO ONE is listening. I am in constant discomfort with little help. Who would have thought your body killing you would be so painful….and who would have known so few people would be by your side as it happened. Again thanks for all the love and support. I am so glad i have an amazing support group and a few good friends who are more life family. Trust me i am learning who IS really here for me, this month has been EYE opening!! So to the people near and far, Please know how important all of you are to me. Love you all times infiniti and remember when you want to give up..

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