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.
- 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!
- 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.
- 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.
- 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!
- 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