My brain is always on

Lately i lay here and all i can do is think. Sometimes i wish my brain had an off button. I think various things throughout he day. I think why cant i just accept my health and all it entails? Why cant i be around people who actually love me and want to be with me? People want to run away from me once they hear how sick i am. Sure some people want to be by my side but with that comes other issues. I already go through so much that sometimes its harder to for me to go through others baggage on top of mine. Then i stress on how everyone will go on without me. My kids, i worry about them a lot.
I just feel so empty anymore & my brain dwells on that. I watch as others go about their business and occasionally pop in on me, like its on their “to do” list and once they have checked it off their list, off they go. Or my favorite one is .. Hey kari come by if you want… But we will never come to your house… Thats my favorite! People just don’t realize how hard it is most days for me to get out of bed &/ or do things. And that is why only a few people really know what is going on with me. Until i can trust you, you will only get basic updates. I really try my hardest to let people in only to get later left behind. I am the most loving loyal person i know, yet its hard for me to find real people to have in my life.
I think about love, and how much i love people and get very little in return BUT i also believe if i don’t fully love every time i might lose the very one i belong with. So i do my best even in my bad health condition. I pray that everything will work out eventually and that i will experience the most deep love with my soul mate before i leave this earth. Im special, i am beautiful, i am funny, i am loyal when i am committed, i am smart… I am a great person and anyone is lucky to know me. We all have good and bad qualities.. My health does NOT define me!!
I get tons of emails on what i think about when i am alone. So here is a brief intro to my brain. Lol

My thoughts on caregivers

This is a really touchy subject for me only because i have been drug through the mud by people who claimed to be my caregiver BUT i keep getting emails on this topic, so here is my perspective on it. I truly believe when someone is diagnosed the spouse/family/friends really do intend on being supportive but then as things start to not go THEIR way(and they do not know how to handle it) they bolt, why? because they can. I personally watched two people say that they would never ever walk away from me and my health, only to watch them both bail. I am the type of person who will give my ALL and i would like to think that i attract the same type of person, with that said, when you give everything to someone, and you tell them you know this is going to be hard and a lot of work and they look straight into your eyes and say I AM ALL IN! I will be your CONSTANT that you can always count on, and then a few years later, i find them sneaking out the back door with my heart and everything that i am, it kills you. I almost think it has been the most devastating thing outside of watching my body fall apart. No one wants to face this alone. My diagnosis took me by surprise, in fact it tore apart my world within 24hours. I watched my Dr fall apart while explaining the diagnosis, then as i walked out of the appointment i felt all my walls fall to the ground and break into a million pieces. All i wanted to do was to run, i wanted to run to a safe place but when i looked around i saw scared eyes starring back at me and people tying their shoes, packing their bags…i knew all these signs, i had already gone through this before due to another previous diagnosis. I thought i had an amazing relationship, i was with who i thought was my soul mate but after several surgeries, diagnosis, dr appts, meds i eventually was left alone to fight what i thought at the time was my biggest fight. To watch what you thought was your version of perfect fall apart and deal with a serious health issue is something i wish people did NOT have to deal with. But unfortunately after doing some research it is quite common, that spouses/caregivers walk out on sick ones. I should have known, it has happened to me twice now. And even though the second time took whatever heart i had left from the first time away, i have tried to build up myself once again to be strong enough to keep fighting, fighting for another day. With what i know now, i would hate to say don’t care about your caregivers, because hey you might have the greatest support team that will love and take care of you unconditionally and if you didn’t give 100% into that relationship(no matter what the relationship is IE friend/spouse/family) you might still get the same horrible response and watch that person walk away from you. Because even though i have had a hard time with having a good person in my life to take on this journey with me, i still believe in good people who are compassionate and CAN take on this hard task. Also i would like to say that just because some people have not been able to be there for me even though they yelled it from the mountains, it doesn’t make them bad people, it just means they were not strong enough to take on this job. Hey i know its hard but tell me ONE thing in THIS life that is NOT hard?! I think you just have to find a balance. I also think you have to have your soul mate by your side, the one who would walk through fire with you, the one who can sit next to you for hours and not say a word but YOU KNOW they LOVE you. I thought i had this once but i am human and i make mistakes, and i need to be more choosey on who gets to travel this journey with me, because its a very special one. So to all the emails i get on this subject, if you feel in your gut, they are one foot out the door, try to talk to them but also prepare yourself mentally for them to leave . It will still sting when they bolt but know that their are a lot of people in the world(he or she is OUT THERE), and things happen for a reason even the painful things. If you have a great support system/caregiver/spouse HOLD ON TO THEM TIGHT, tell them you love them, give them their own time, always thank them(especially after a hard time IE screaming in pain all night, being frustrated with your health and taking it out on them ect). A hug or a card or a thank you go along way. Wishing you all a great Wednesday, i am off to deal with my not so great DR. Also tonight i get my lung tests back…arrggg… (this is the time to have a great caregiver)
If you are a caregiver, the only advice i can give you is when you say YOU WILL BE THERE and NEVER leave MEAN IT! If you can’t do it say it! Do not drag us through emotional pain. If you need help, ask questions, do your own research. Tell us your fears, we will listen, and i guarantee your fears ARE our fears. Love wholeheartedly. Remember actions WILL ALWAYS speak louder than words. Your job is a hard one but i believe it is also rewarding. A big hug to you all who stick it out and not because YOU feel you have too but because you want too.

p.s Thanks for always supporting my blogs and emailing me all your questions! I try my best to get on here when i can, my health is progressing and it seems that each day is getting harder and harder to do things but thanks…

Happily uncomfortable

sun_sky_1I was reading my favorite blog by rawarrior and she wrote that phrase,’Happily uncomfortable” and it really touched me. Why? Because it is exactly how i feel most days. I am uncomfortable 24/7, the pain i live with is awful and at times unmanageable. It seems so UNREAL. Even though i am in so much pain, i still feel all the other emotions, like i am HAPPY sometimes, believe it or not. I am happy when i am on a motorcycle, i am happy at church, i am happy when i can’t feel my spine, i am happy when others are happily helping me get through my day. I am mad when people look at me and can not see how sick i am because most my sick parts are INSIDE, where you can’t see them, i am mad when i am stuck in bed because the pain is debilitating that i am a prisoner to the disease, i get mad just because i am allowed to BE. I am sad sometimes when no one is around to help me do what i need to do and because of that i have to beg my body to let me do what i have to do that day. I am sad when i miss people. I am completely DEVASTATED that i am terminal, my life has 100% changed and that it hurts to breathe, walk, do anything FUN, that i used to do. I love God, i love the sun, i love the breeze on my face, i love my kids, i love my man. You see just because we are terminal or we are chronic, it doesn’t mean all of a sudden we do not feel anything but pain. (even though i think i do have those kind of days, severe pain can over run all of the above emotions, TRUST ME) We are still human and i think people forget that. With that said, dont stop loving us, and at the same time accept that we will be at times Happily uncomfortable!

Update

A lot going on this week. Still waiting to see about these last tests. Once we find out whats UP…i will pass on the info! Meanwhile i am in massive pain and in and out of the hospital again. This whole process is so frustrating. I am hopeing that in the future no one has to go through what myself and others go through with this scary chronic disease. Here is an update of the actual meaning of RA….and i was shocked because it FINALLY also says something about Multiple Organ RA which is what i have….
*****Rheumatoid arthritis is a chronic disease where the body mistakenly attacks its own tissues. It causes inflammation and painful joints, and also may attack other organs such as the heart. About 2.1 million Americans, or 1 percent of the population, have rheumatoid arthritis, according to the Arthritis Foundation.

Cardiovascular deaths accounted for about half of the deaths for rheumatoid arthritis patients in the research sample. The findings did not distinguish between the types of cardiovascular disease that led to mortality. ******

Also another holiday coming UP…Valentines day! What does this holiday mean to YOU??? To me it is just another day and depending on who you are with is what makes it special,all my valentines have been different and special..but it also is my grandfathers BDAY which makes me sad as he passed years ago…so in a way its a good and bad day for me….I do miss having young children on these types of holidays though…making little bags with candies, gifts was a lot of fun. I can’t believe how much i miss being a mom of young kids. Mine grew up so fast.. ;-( Although now that i am terminal i am glad they are grown because that means i was able to be their mom when they really needed me…they are now both on their own and i wish the world for them! Recently it was recommend that i leave each of my kids journals that are personal to them….so starting this coming weekend, i will begin those private journals…..I do want to be able to leave them something personal like that! Good advice from a mom who passed away from cancer! Thanks to her kindness and love, i will be able to leave my children the same gift she left hers!

Next week i will try to work on the PICTURE PAGE and also get some information up on stem cell research in Panama. I am really curious about stem cells…it has helped some people…do you think its playing God or do you think its just another option like chemo etc?

Happy Half week!
Love you all times infiniti

Trying to smile through it all

This week has been rough
First off we only have half the tests in, we are still waiting on some lung, thigh and kidney tests. What tests we HAVE received are not good. CHEMO for the last year has been a WASTE, as all my new tests show my disease exactly where it was in Dec 2013. So essentially by body is not responding to chemo, now i knew in the beginning that there is NO CURE for what i have but i was under the impression that chemo was going to give me MORE TIME with my family…this has turned out to NOT BE TRUE. ;-(
I can not even begin to tell you how discouraged i am. I really would like to do some traveling, i want to spend time with people i love, i want to see how many concerts i can go to, how many movies in a month i can see, how many cities i can visit and so forth. I know i am in so much pain and discomfort and most days i have issues just getting out of bed BUT i want to find a miracle in everyday. I want to be able to take this all with my head held high and with a smile, but at the moment, i am struggling to even begin to understand all this myself. I am having a HARD TIME! Tonight as i sit here, i am reminiscing on all the smiles that at one time in my life put a smile in my heart…Thanks for all the laughs, hugs and special moments you have all given me!!! this post is dedicated to all of you……..(Due to all my Colton(Monkey) pics, I could not fit everyone…on this post so i will be doing a dedication PAGE not POST to everyone that has made me smile over the years….so check back in a few weeks)
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