I know there’s a few things that I said I was going talk about but first because most of you enjoy my day to day crap, here is what you all missed,already heard about or were a part of…
Thursday, December 10 I woke up at approx 11:30 AM with some pain but had previous plans to watch my little princess(my girlfriends gorgeous daughter)Maddie. I really enjoy my time with her, since my kids are all grown. Unfortunately My little princess slept the entire time.
A few hours after Maddie went home, I felt extremely anxious so anxious that I just want to punch a hole in the wall. I’ve been noticing that I’ve been getting that way and it’s usually a couple days after my chemo meds mix with the other treatments i am now on. Just what i need, something that makes me MORE anxious and angry.
Friday, December 11th, I woke up and didn’t feel too bad, so I went to work for an entire shift. By the time I got home my back was a pain level of 10, i dislike how the pain can go from a 5(which i have accepted as my normal) to a 10 whenever it damn well wants too!
Saturday December 12th I stayed in bed all day it was awful I could not move. However Brian stayed with me the entire time and we were able to get caught up on shows and watch a few movies.
Sunday December 13th I was able to work for a few hours and then go back to bed for the rest of the day. What a life i live.
Monday December 14th I worked for a few hours and was also very lucky to get my picture taken at Reno guns with one of our new coworkers for a magazine spread in a local magazine. After work i had a dr appt with one of my specialists. I dislike how every 4 weeks it is the same question…HOW HAS YOUR PAIN BEEN? Every month i think the same thing;
But to be truthful, it was a decent day for ME because even in the evening hours I was able to join my niece for her 21st birthday at GSR.
Tuesday December 15th my pain level was about five. I was feeling OK until the evening hours when I did treatment number 3, along with chemo meds….CAN YOU SAY YUCK!! I want to have a pity party because i am DONE doing this shit!
Wednesday December 16th I heard from a very old friend From Idaho which was nice and i did some grocery shopping. And when i say shopping for those of you who don’t understand how chemo meds and other similar drugs kick your ass, i mean i bought some bread and crackers. The rest of the day i spent…..you guessed it….in BED (eating those crackers and nibbling on that bread) 😉
Thursday December 17th I felt very exhausted and I had a very high level of pain, way beyond that damn 1-10 scale. I have nothing further to say about today.
Friday December 18th I worked for a few hours and then went home with severe head pain(another awesome side effect)
Saturday December 19th I did a little bit of grocery shopping and went and visited my grandma for about an hour. I then went to bed. Another joyous adventurous day.
Sunday December 20th we went to Santa Clara to watch my 49ers lose. This is how i felt about it
I must say The new Levi stadium is really cool and we took a lot of fun pictures
We even got stuck in the snow and had to buy $70 chains(that will be used once or twice) and got home late. This photo shows Brian putting on the chains, my expression to the cold outside and the beautiful snow before and after the sun went down. I am surprised i was still awake, i rarely do trips like this anymore as it kicks my butt.
Monday December the 21st I worked for a few hours went home, changed and then went to see the new Star Wars movie. It was OK I’m just a 1970’s-80’s Star Wars girl these new movies kind of frustrate me but it was good nonetheless. Great graphics!
Tuesday December 22nd I had trouble in the morning opening my hands and feeling the bottom of my feet. It is chemo day and I’m a little worried about it because I don’t feel good at all. I’m very scared these are the days that really get you thinking about bad stuff, the depressing stuff. Your brain and body on all these drugs can really affect your thinking. This is very frustrating and scary and all you can do is spend the day in bed curled up in a ball praying that God will help you through it and then tomorrow comes! Thank God!
Wednesday December 23rd and the same thing is going on, I’m having trouble opening my hands and I do not feel the bottom of my feet but my head is more clear. I guess i need to just let my body rest and let these POISONS do their damn job. ARRGG
Thursday December 24th I worked for about five hours then went home to relax and watch some TV…
Saturday December 26th we got up around 10 and drove once again to Levi stadium to watch the huskers kick UCLA’s butt!!! Because it was a late game it was freezing cold, but it was a really great game. My disease THRIVES on the cold…i hate this FACT… i was miserable towards the end of the game because i was cold and i had 2 jackets, and several blankets. I think the stadium needs to move a bit closer, 8 hours total driving sucks!
Sun 27th I worked from 10 AM to 4 on very little sleep. Just in case you didn’t know i am A SUPERSTAR. Right before i fell asleep, i realized i was internally bleeding. Sometimes this is a very painful/messy process.
Monday December 28th i went to work and boy did we work our buns off. The Gun range was busy and it really wore me out, i hit the bed the minute i walked into the house.
Tuesday December 29th is not my usual day to work but when we are as busy as we have been and i feel that i can give a few hours, i go and help. We are team and that is what team members DO. In the evening hours i did my meds and watched TV.
Today is December 30th and i am having one of those poison kicking my butt days. which means i woke up at around 1pm and used almost all my spoons showering. I feel like shit, my body aches and i just feel yucky. I am finishing this damn post though because it means ALOT to me.
Ok so now that i have you all caught up on what i have been up too, lets get into the MEAT of the blog…..
I am very frustrated, I’m really not trying to make people feel bad or anything because I want people to enjoy their holidays. It is not their fault that they have great family great relationships or whatever but I’m on the opposite end of that and I’m allowed to feel what I feel too. With that said I would just like to talk about a few things because i know i am not alone on this and i know negativity and frustration can really affect our health even more.
Lets talk about “family,” both our families are pretty neglectful and not around. Many of them think that if they Facebook or text once a year, that makes them family..truth IS it doesn’t…..BEST part, then they wonder why we stopped ALL contact…UH DUH?! Then their are those who just can’t be around me due to my health…it is just too hard for them to watch or be a part of….please…i don’t need you anyways. Then there is the ones who only contact you when they need something…….AND My favorite, “we are in your lives.” Ummmm seeing you every 5-6 years doesn’t make you parents or family. And if you try to talk to them about it, they blame it all on YOU, because they are so perfect. Truth is it is SO HARD to NOT have family around when you are going through tough times. I have had 18 serious surgeries and my dad has been to 1. My doctor a few years back told us that i had a 30% chance of waking up from surgery and that it was important for my dad to be there….Guess who didn’t show up? My mom and i have never had a relationship( i have only seen her for approx 9 days, in 21 years) and that is all i have to say about that. So i have to rely on Brian or friends. And i always feel so helpless and like a burden on others because it SHOULD be FAMILY here! I did NOT ASK TO BE BORN.
We try not to worry about having no family, BUT the holidays are hard when you are family less. I get sad reading everyone’s happy family holiday stories….don’t get me wrong, i am so happy for you all….but i am so envious. Always treat others how you want to be treated. Love one another life is SHORT, just ask ME.
Living with this chronic terminal disease has changed my life completely. I had a whole different life before this, before they told me my body was killing me. I miss all the Criminal Justice stuff i was working on. I had finally found my passion and then BAM…all of it was Gone, in a blink of an eye. I will never forget my main Doctor telling me the test results and how he redid them 3 times because he could NOT believe what he was seeing. And all i could think of,was what about my liver(because i was diagnosed in 2001 with a liver disease called NASH) and all he said was, you don’t have to worry about your liver anymore, as this NEW disease will kill you. That day feels like yesterday, not 3 years ago.
Its funny or NOT funny however you choose to look at it, But sometimes i look back on my life and wonder how i made it through..from day one. How did i live with parents who didn’t want me? How did i let someone beat me for several years and then run off with OUR child for 15 years? How did i get through all those damn scary surgeries? How did i take several people who said they LOVED me, later tell me i was to sick to be WITH? How do i ALWAYS take all the bad news that comes my way? They say God doesn’t give you more than you can handle. Does this mean i have broad shoulders? Because i feel so broken sometimes, i don’t feel like i have broad shoulders, in fact i just want to give up sometimes. When people ask me at work or when i am out and about, how i am, i just say what they want me to say most days because no one really wants to know what i am going through. Its tough to swallow and what can you say to me HONESTLY? I’m good at hiding it I’m good at pretending that I’m happy I’m good at pretending that I can getting through this I’m good at faking all of this. It is so much easier than sitting you down and explaining. Would you even be interested? Would you even care? I am a part of an amazing online support group where most of us have similar if not the same disease/s. I see this all the time, people talk about how people ask and then they try to be honest and then realize the person was just being nice and expecting a “i am ok” response. Let me just let all of you know..WE ARE NOT OK…yes we have some good days, we might even get out and about occasionally but mostly we are dealing with a lot of private things. Some of us have great caregivers and or meds that are working ok others of us, like myself are struggling a little more. We never know what happens behind closed doors, don’t assume you think we are all ok or taken care of the way we should be. If you care, sincerely find out if we need something or if our caregiver needs something. Caregivers are going through stuff too. In the words of someone i used to know, ” watching you die, makes me feel like I AM dying too.” These chronic/terminal diseases are depressing, sad, scary and sometimes very lonely. People really don’t know how/what to do with us/for us. Our social life goes from a 10 to a big fat ZERO very quickly. I have been blessed recently to be able to work 15 hours a week. it may not seem like a lot to you but to me, it IS like working 40 hours a week. My body punishes me, trust me BUT i do it because, i get to be around other people, laugh, talk, and just pretend to be normal even if its just for 15 hours a week.
To end this, i just want to say……In almost 24 hours it will be a NEW YEAR….
A. Be kind to each other, we are all battling something. Smile at a stranger, you never know what kind of day they are having. Have compassion for ALL people, Don’t ask how we are UNLESS you are willing to hear about how we really feel. This goes for healthy people too, they have problems TOO!! Remember those of us who are sick, we are living on Spoons, do something nice for us, so we can spare a spoon on doing something WE enjoy. I HATE using my 10 spoons a day cleaning up after EVERYONE.
and finally…some great words to live by..Miguel Ruiz’s The Four Agreements
THANK YOU TO BRUCE Robertson FOR SUPPORTING THIS WEBSITE! SOMEDAY I HOPE TO BE ABLE TO PAY YOU BACK..MAYBE WITH A FEW BEERS HA! A HUGE THANKS TO THE ONLINE SUPPORT GROUP I AM APART OF, I MAY NOT ALWAYS TALK OPENLY, BUT YOU ARE ALL SUCH A HUGE SUPPORT FOR ME. I PRAY I GIVE YOU A INCH OF WHAT YOU GIVE ME. A BIG HUG TO ALL THE NEW PEOPLE IN MY LIFE, RENO GUNS CREW AND FAMILY MEMBERS, OUR H.O.G FAMILY AND ALL THE FEW FOREVER FRIENDS/ WHO HAVEN’T LEFT EVEN AFTER EVERYONE ELSE DID. FINALLY THANK YOU BRIAN, FOR MOSTLY BEING MY CAREGIVER ABOVE ALL OTHER THINGS. I KNOW IT IS A TOUGH ROAD TO GO DOWN WITH ME, BUT AS YOU SAID, WE ARE BIGGER THAN MY DISEASE! I LOVE YOU ALL AND I WISH YOU ALL ANOTHER YEAR OF HOPE!
P.S I use this as my final 2015 picture because even in this picture, i felt sick, apparently lost a glove, my 49ers lost, YET i CAN say this is one of the Happiest moments this year! This picture says it ALL.
BRING IT ON 2016