Last May Post

So first off, i will start with a health update. I survived both procedures. Today is the day after the 2nd procedure and i find myself very sore in places i have never felt.  

 I am unsure if this is going to help as of yet but i need to know soon because a surgery will be coming up soon and i need to make the best decision i can. Ok on to the latest readers questions.

  1. 1. Do you feel you get what you need from others. Are you happy?     Outside of this scary frusrating health stuff, i have  been realizing that i am very unhappy. And i know 70% or more is my health but the rest is the “crap” i ALLOW to be/happen in my life.  I already sacrifice ALOT due to my health & then find out it’s not enough.  For example my Birthday is in a few weeks but for the sake of other things i must let it pass & not acknowledge it. Now  this is new for me as my birthday has for the most part been an important holiday for me(mostly because other holidays have been dismissed).  I have never been very materialistic(gifts occasionally are nice though) but i do like to feel emotionally special more.  One of my fav birthdays was a trip to one of my fav places and there i found a hundred notes with reasons i am loved! Now that was awesome!! I am a sentimental girl…. I love making memories, because in the end that is all that matters. The sicker i am getting, the more i am craving the need to make memories but i seem to be the only one. It’s funny or sad(depending on how you look at it), how people think they have all this time left with me, so why bother doing something special now, right? I also believe lately its all about making others happy, doing what they want. I honestly feel the more neg health news i get the more i let people walk on me. I want my moments, i want my dreams to come true, i want actions NOT words & most importantly i don’t deserve paying for others crimes. It’s Definetly time for change!  
  2. What are your summer plans?  I don’ t have much money so i have to stay mostly in my prison(home) but i will make plans to go to my special place @ Donner Lake & Folsom Lake a few times, even if it means borrowing gas money. I also plan on growing closer to God by doing some group/private studies.  For me God gives me Hope & he is the only one who never leaves my side.  The more i have God in my life, the less room i have for crap/people that bring me down! I have wasted enough precious life. I also plan on working on my Gun skills and of course riding with my HOG Chapter. There are also some health things coming up that i am superexcited to be a part of, i will let you all know the closer we get to the dates. Some  Photography shoots will also be scheduled this summer.
  3. Any new updates for your website? Yes,  starting June 1st, i will be doing a weekly journal. I hope this will help keep everyone more informed. Also i am having some caregivers tell their stories & i hope to have some type of suicide hotline up by August. 
  4. If you could just say what you wanted about your disease without being   misunderstood what would you say?        Please stop saying “you look good for being this sick”(as opposed to what?) or “you had a procedure, glad you now will be better” or “you went out for a motorcycle ride, so you must have felt great”! Look just because my face is pretty or i wore makeup & dressed up nice DOES not mean i am feeling good nor not sick. My disease is my BLOOD!!!!!!!!!! Which means you can’t see most side effects because its inside killing everything!I Usually   have to plan weeks in advance and move my meds around to do things like rides/trips etc. You don’t live with me 24/7, so you don’t see all the prep work.  Also just because i have procedures & surgeries does NOT mean i am cured. There is ZERO cure. A big problem i also experience is people getting frustrated because i don’t call or write enough, boy it’s you guys i would lve to spend a week with me!  Spoiler alert get ready to spend 90% of your time in bed & maybe if im feeling up to it, we can go to church on sunday & maybe a store if we are lucky! (Read the spoon theory)!!!!  I highly recommend thinking before saying anything. It personally frustrates me when someone says things like this too me. I recommend saying,  “its great to see you out & about, you look good” or just give me a hug and talk regular talk….i am a regular person, i am just dying earlier. And if you want info on my health just ask, don’t assume. I will be glad to explain something to you.  Do not just read something or pass on info from your brothers cousins ex wifes aunt. Remember we are all different even if we have the same or similar health issues. No 2 people are alike. Another thing, do not ignore or treat me like i have the plague, it’s not nice to treat someone like that. We all have issues we deal with, having a terminal illness is mine! 
  5. Is your support system any better than before? Thanks for asking but No. No parents, no family around town. I am alone 60% of the time.  Very few visitors, if any at all. My few best friends live in other states & i dont see them much. I plan on doing a photo shoot that will depict a sick persons life! Maybe then when you see how many people turn their backs on you for whatever reason and how lonely/depressing/scary this life can be, you will then be grateful for  the life you have! Love one another Unconditionally!!!!!!!! 

Well i hope that helps, stay tuned for the weekly posts about the weeks events and until then thanks for everything

Update

I hope everyone is doing well and/or the best they can. I have been very busy seeing new Dr’s and dealing with new information. So far i now have a new specialist who is going to TRY and help me with my compressing spine. My first procedure on the spine is May 22nd. The second one is May 27th. I will keep everyone posted as much as i can. With that said i am going to share a few feelings on all this new info. I am TERRIFIED! I am so nervous. I am so worried that none of this will work and i am also worried that i might work. I know that probably sounds crazy but if it does help a little and i feel less pain…..i will not know what to do. Will the other diseases step forward and take its place? Or will i get a little break? *FYI even if it does work, Dr says it is not permanent and he will have to perform the procedure again and again every few months..* 

Lets pray i survive a little longer and the procedures help….

To the ones who are no longer

To the ones to look down & no longer see’s my hand in yours….

As my health got worse and other life issues crossed our path, life pushed us in different directions, but tonight it’s you crossing my mind. How can you be such a huge part of someones life one day and next be nothing. It took years to have what we had, this relationship/friendship had meaning, does it still? You can’t just throw away invested time. It amazes me how many people turned their backs to me as the health diagnoses were read, and it devastated me but not as much as you pretending i am already dead. My life feels so empty sometimes and then i remember why, a piece of me is missing, you. Somethings in this world are not worth going through alone and or with out a person who knows every thing about me. I know life continues on but it breaks my heart when i don’t see you in my corner. I have no parents and very little family and along this journey I’ve also lost a few friends who were more like family. Sometimes it’s you I want to reach out to to scream to cry to ask why it’s you I want to pray with its you Who would never judge me or question the things I’m doing. I just hope you know you crossed my mind often and I am saddened that you are not here holding my hand. I believe some people were meant to be on my path for a while to help me grow others are on my path for the long-haul to get me from point A to point B.I wonder if you ever look down at your hand and wish that my hand was in your hand. I pray for you and your family often because no matter where you are who your with what you doing I only wish you happiness and joy. Tonight you’ve crossed my mind….

Invisibly Abused 

Lately i have been feeling Invisible. Like i am in the middle of the room and everyone is around me going about their business. Walking around me like they don’t see or hear me screaming.  Like somehow i am inside a soundproof invisible wall. I wish for once i could be on the other side, NOT to watch someone be in pain but to get a hammer and shatter the soundproof wall that apparently surrounds me. I want to be heard, i want everyone to STOP and listen to me scream or talk about my health. Not just hear me BUT actually listen. There is a difference! Everywhere i go i get the good to see you and then disappear act or the how was your day(don’t really care), walk off something is more important move or best yet, you feel like crap but what do you mean you can’t run a marathon today look. It is kinda funny sometimes because i will tell somebody something important and within the next 24hrs they will not remember. Then i will hear the sorry i have so much going on in my life, i forgot you said something to me. Then there are some DR’s who never check your chart, treat you like a number, cut you off after asking you to explain your pain etc, tell you how YOU should feel, degrade you and just plain make you want to crawl under a rock. I don’t know about you but to ME their is nothing worse than knowing your dying and having no faith in anyone around you. Somedays i just want to RUN, run because if it’s not my disease kicking my ass it’s humans. 
   I know it is a pain to LISTEN to us day in and day out but, just imagine what pain & disabilities we are dealing with day in & out. We really don’t mean to drive anyone crazy during our pain rants or crying sprees. We are just trying to “deal” with it. We are trying to figure out how we are supposed to live now, with this pain and or disabilities. This isn’t easy, it’s not like we have the flu for a few days and will be back to our normal self by Friday.  This is a NEW reality for us. I have been talking to a few new online people who also share my diagnosis and we all seem to feel this “invisibility” to a degree(some of us more than others.) That is why i am openly talking about it, it isn’t just me. It isn’t just me thinking something is wrong with me outside my health or something else personal. 
After talking to a little more than 50 people i started to make a list that i wanted to share with you all….and this is important so please read and if it applies to you, please consider the suggestions. 
1. Don’t walk away from us. If you need a break, nicely tell us you will be back in a few. Yelling and degrading us is not acceptable and is very hurtful.
2. Belittling our health is very frustrating, we get enough of that elsewhere. 
3. Emotionally/ physically abusing us because you are angry at our health and or us for being sick is just awful. If you need an outlet for your frustration find  something productive to do! We are not YOUR punching bags. No one deserves to be abused, you are a complete loser if you do this. 
4. Ignoring us WILL NOT make the disease/ problem go away. Deal with it head on. Ignoring our health just makes things harder because it’s frustrating watching you ignore it, yet we can’t.
5. Listen, chances are when you listen we will feel much better (emotionally anyways). And hey it is something you CAN do for us.
6. Nodding and agreeing with a “yea must hurt”or “i can imagine” is NOT helpful,  Really try to empathize. 
 I guess what i want to say with this post is Don’t be with us if you can’t act like a person. Don’t be afraid to use your words. We already know you personally can’t save us but there maybe something you can do for us to ease/ help us. I am learning that living with a chronic/terminal disease can be quite lonely but i am refusing to be treated poorly anymore! I still have a lot to offer, this disease is just a part of ME and should be the ONLY BAD guy in my life. 

May Questions Answered

Several people emailed or Facebooked me several questions that they would like me to answer…. let’s begin

1. What are some of the Bible quotes that help you get through bad days?
Exodus 14:14 I will fight for you you only need to be still
John 14:8 if God is all you have then you have all you need
Psalm 139:3 I am never out of your site
Psalm 61:2
2. When able what do you like to do for fun?
I love to go on motorcycle rides and JetSki during the summer, hang out with good Company, travel, watch my 49ers play, go on scenic walks, photography, write letters and just enjoy every second that I have!
3. If you had one wish what would it be.
Honestly this is a hard question for me to answer because you would think I would say to be healthy but then I wouldn’t be who I am now today. I would just like to have enough money to travel to some places that I’ve never been because while doing so I will make 1 million more memories for other people to have & hold on too.
4. Who is your oldest friend?
Well this one’s easy his name is Dan and he lives in Idaho with his family. Although Dan and I don’t talk very much I am very close to his family who I speak to fairly often and I am so blessed to have them in my life! And then there is also Rhonda I met them probably within a year of each other. Rhonda and I are still very close.
5. What is the nicest thing anyone has ever done for you?
This is another hard question because several people have done some fairly nice things throughout the years and it’s really hard to choose just one so I will just name a few; to me some of the nicest things is when a non-emotional person shares with you something very personal and shows emotion, that’s what I call sincere transparent and nice! Another emotional nice thing that was appreciated and close to my heart is one time my Colton(3 at the time)held my hand and said it’s okay Kari I am not going to let you die”
As far as materialistic nice things; one year in February I received a dozen carnations(my fav)every day until Valentine’s Day as you can imagine my house was filled with carnations. It was so beautiful and so out of the box it was amazing, one year my entire Christmas list was bought for me and my 9 foot stocking was completely filled! Crazy:-p
Another Nice thing was when Brian bought me my new gun because I could not afford to get it! It’s a terrific gift that keeps on giving!
6. Where would you love to live or do you like where you live?
I do not like Reno at all I love northern California but unfortunately California takes all of your rights away & this girl does not like that!!!!! Another place I loved was Jackson Wyoming.
7. If you were writing a movie script about your life what would be the title of your movie?
Forever and A Day
8. How would you like to spend your summer?
I really miss Jet skiing, so maybe someone has a jet ski i can borrow, I also plan on going to Pismo beach by car and doing some other traveling possibly by motorcycle. This is why I have started a go fund account so that I can raise enough money to be able to travel and do these things before I am unable to do so. I also am doing a penny drive to raise money. But I guess my main goal is to get out of bed at least twice a week and do something even if it’s for just an hour. I refuse to let this disease take every second from me.

I have a few more to answer but i am just exhausted/feel sick and need a break. Have a great week and remember do NOT waste time on NEGATIVE thoughts… And as always thank you for all the love and support that I get

My thoughts on suicide and depression

  Although i know i do not need to apologize for my blogging absence as most of you get how fatigue & pain can affect our bodies, i do regret being gone so long. I miss blogging! 

With Mothers Day in a few days i thought i would wish all you moms a Happy Moms Day! If any of you have read transparent me one of my blogs I wrote a few months ago or have read the “all about me” section you’ll know that I don’t have a mother in my life, so for all of you out there that are being the best that you can be whether your terminally sick or you’re healthy I give you a high 5! Happy Mother’s Day!! 
Today I am still not feeling very well I am unsure whether it’s a mix of the chemo meds, pain meds, other meds and my disease or what but I just don’t feel good but I know that it’s important to continue with my blogging because it’s good for not only me but for other readers I’ve been able to help! 
With that said.. A topic that I would like to talk about today is depression and suicide. Lately I’ve been reading a lot of other blogs that have been really negative some of them so negative that they’re putting pictures up that say “I’m ugly” I’m this I’m that and that really makes me sad! You know we might all have some type of problem whether it’s physical or mental or just a regular life problem but that doesn’t make you ugly but when you put those words out on your Twitter, Facebook or other social media those words are given wings. Even if we just feel those things for a moment just let that moment pass don’t give those words wings!!!!
Personally I know that when you’re stuck in bed all the time it’s depressing and you can get down on yourself and you can get down on your life I know I’m there at least once or twice a week but I don’t give it wings. It’s okay to talk about it and it’s okay to post about it but don’t make it so negative don’t say I’m ugly I’m horrible I’m this I’m that just say I’m having a really bad day & I would like to talk to someone about it. Being depressed is completely normal in fact if any of us that are in the situation with having either a chronic and or a terminal disease if you didn’t say you were depressed there would  be something wrong with you. Being depressed is normal,  what’s not normal about it is staying depressed. In fact if you’re feeling depressed please reach out to someone. Unfortunately for us auto immune disease folk suicide is quite high and I get it I’m not saying that  I have not ever felt that way but I know suicide is not the way. 
When you start to feel suicidal I just want you to think about five things that make you happy not other people happy but you happy. And don’t give up if you can only get three then hey hang onto those three things it’s better than nothing. And I pray that during that time while you’re thinking about those five things that those suicidal thoughts are leaving your mind. And hey none of us are perfect even healthy people who just have money problems or relationship problems or whatever else life has brought to their table they think about suicide too, so you’re not alone and it’s okay so please reach out and get help! Here is The number for suicide prevention 18002738255
Use IT!