Comfort ME, I don’t want to Die

Thanks for your continued support! I am very grateful for all the emails, and messages I receive.  Some of you have asked what a few things mean when i post about them:

  1. Spoonie = a chronic/terminal person
  2. Dish = caregiver/spouse/boy/girlfriend(the dish ran away with the spoon)

I hope everyone had a great January…Here is what you all missed…

 

January 1st I was having a lot of pain…in fact in my diary all I wrote was’ “fuck I am exhausted and in loads of pain.” ;-( I guess that explains it!  I do however Hope 2 special people had a Great Birthday Today, my grandma and an old friend named  Dan.

January 2nd  All I did was relax in bed ALL DAY…. Oh boy what fun this is…(insert sarcasm)

January 3rd  I worked for a few hours and then went to the Reno Guns Holiday Party at a local Archery place. ! Let’s just say we all should stick to guns IMG_7610….HA!  Enjoy these fun  pics of our Holiday Archery Fun!

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OK Let’s try SOMETHING NEW, because to be honest, this is depressing writing the same thing over and over about every damn day..”I don’t feel good and I stayed in bed all day.”  I freaking hate this shit…..

 

Lets just chat about the Highlights of January 2016!

I spent one afternoon making smoothies. I am supposed to be on a permanent liquid diet because my stomach no longer works. It just take a lot out of me to make these damn smoothies every week. I need a smoothie person a few times a month. 😉IMG_7522

I cleaned out most of my closet and donated clothes to the woman’s shelter. I encourage all of you to go through your closets and what you have NOT worn in over a year, donate to a local shelter. You are not ever going to wear that sweater….tell the TRUTH!

I spent a few hours with an amazing photographer who made me feel special and most importantly reminded me that my health is NOT everything about ME.  Here are a few Chosen photos. This was the exact length my hair was before it began to fall out due to the chemo meds. The last photo is one that depicts my sick days, all my meds, the hair i lose daily, my big ass pillow i have to use for my spine and legs and the spoons i use each day.  I will be choosing a few more for my February post.   Bree Hogue Photography was very professional and she is a big sweetheart! I highly recommend her.

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I visited a local hospital that treated me like shit. Some Dr’s need a lesson in bedside manner and pain control. This Dr refused to do anything for me. He blamed my disease for the outrageous pain I was feeling, IGNORED the fact that I was internally bleeding and sent me home  AFTER doing  5 IV’s for NOTHING. I have already reached out to the medical board. I have no idea why Dr’s once they read your chart and see that you have a chronic and or terminal disease they treat and street you, or just street your ass. Its like you are NOT their problem. I thought they were to do no harm?!  I understand that Drug addicts and or issues have made hospitals “tighten” their strings for lack of a better word. BUT IF YOU SEE MY CHART I am not a problem child, my issues are WELL DOCUMENTED.  The best thing is no matter whether they treat you or not you ALWAYS get a FAT BILL in the mail.  Funny how that works

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My daughter also moved out this month.  Kind of sad about this one, but hey it is time for her to start her life. I wish her all the happiness and health in the world! I love her to pieces. <3 Just sad that a HUGE part of my world is out on her own. Kids, they grow Way too fast. (sniffle)

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Outside of all these highlights I was IN BED. I figured it out. I spent 78% of my month in bed. My disease is really kicking my butt. We see the specialist February 11th to talk about options. I am super scared; everything we try does NOT work. I think about what we all have talked about…me stopping all meds.  I just know every time I bring it up people freak out because I will die but I am currently taking TONS of poisons that are NOT helping. So what is the point?! Maybe i should just be happy because i have lived this long. Maybe my journey ends now. I tried man made drugs and they are not helping. I am so tired of all of this. I am tired of smiling through it all. Im tired of pretending i am ok. I got this, i am not scared. When i AM. I am terrified.

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Sometimes I get angry because my outside appearance DOES NOT SHOW what my organs, joints and bones are going through. I get to hear how GOOD I look, which sometimes makes me cry inside because I feel like shit not just on bad days but all days.  It’s very frustrating. Since Mr. Frey died of the Eagles, “invisible diseases” as they call them have become the forefront to some recent news articles. I think this is AWESOME. They call them Invisible diseases because in MOST cases YOU CAN”T SEE THE DISEASE because IT IS INSIDE US. OUR CELLS are KILLING US. CAN you see OUR CELLS?! Hell I can’t even see them, so how could you?!  BUT I DO FEEL WHAT MY CELLS ARE DOING. I ALSO FEEL ALL THE POSION I TAKE TO TRY AND KILL OFF MY CELLS/IMMUNE.  I hope that this recent “famous” death gets people talking and maybe even tested for these diseases. It is SUPER important to get tested especially if it is in your family. I don’t care what disease run rampant in your family, if there is a test, DO IT!!!!

 

And trust me I am by No means trying to be mean to anyone who asks how I am doing or occasionally says, hey you look good today(because when I do look good, everyone should be telling me lol). It’s all the other stuff in between, like all the “over concern” or overly telling me how good I look because you have no idea what to say to me.  Just be YOU…tell me in your own words how you feel about me being sick or ask questions…I will answer them the best I can or I will tell you to BUG off, if I don’t want to answer. LOL

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On a very serious note, lately I have been reading about spouse/boy/girlfriend abuse on the sick (Spoonies).  I have myself gone through this and I think it IS important to reach out to those of you who are struggling with this. I am in your shoes, you are not alone. First off it you are being abused, get help. You don’t deserve this, you did not cause this, your disease did not cause this. If you need to chat I AM ALWAYS available. No matter what my body is putting me through, email me and I will give you a # to get a hold of me. On this note, one of my 2016 goals is to look  into a suicide/help line for “Spoonies” and their caregivers. We MUST get the suicide/abuse  numbers DOWN.. For those of you that are going through tough times(not abused)(ie frustrated etc) with your “spoonies” or you “spoonie” are having a hard time with your spouse/caregiver, please take the time to calm down and then talk kindly to each other. Dealing with a chronic/terminal illness is NOT easy on anyone. Sometimes both sides are frustrated and just need an outlet or a break. With this said, ABUSE IS NOT  RIGHT, ITS NOT LEGAL, ITS CRAP. AND NO ONE DESERVES IT.  ABUSE is NOT the ANSWER EVER!!!  Got it?!   *** side note**** verbal  IS abuse, please be kind with your words.

Remember OUR body is already abusing us, we don’t need you hurting us. Besides, if you are to a point where violence/verbal abuse is how you are responding to us, get out! Let someone else take care of us. One lesson I have learned through all this health crap is, everyone is replaceable. If you see us as a burden, let us go now, don’t waste what time we have left begging you to love us. Again if you are just scared/frustrated like us and need some one to chat with, let me know and I can point you to a spouse/caregiver support group who may be able to assist you and or call your local hospital and ask for support groups that you and your spouse may be able to attend. Love not every minute but by every second, that is what most us are living by.

 

Anyways I hope everyone had a great January. I hope to begin raising money to see another Dr Outside of Nevada. I will be raising money via my Gofund. I will put a link at the bottom of this post if you are interested in donating towards the Dr visit. I also really want to sledding!!! We have snow and I want to go sledding, no matter what my body says!snowLet IT SNOW!

I will also be starting a “spoonie” coloring contest for all persons fighting my disease and or another bad ass diseases. Hopefully getting a suicide line up and running. And also if you are athletic talk to me about running for my disease in a few months. I will be “walking” for a cure and I PRAY several of you will be running for my cause! I plan on seeing Mr Tyrone Wells again soon, he really knows how to inspire me to continue on even when the light is off in the tunnel. Thinking of you Tyrone. 😉 If you would like to take a trip to southern Cali with me to see him, email me. It would be a trip you will never forget, memories that you will cherish. So be on the lookout for these few things and if you want to participate, hit me up! Until then, hang TOUGH, Never give up….this disease is not going to define me, so do not let your trials define who YOU are.

….On a hilarious note……

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See You on the RANGE……

IMG_7729IMG_7521The guys love when i catch them working hard❣