Claustrophobic in my own mind

Sorry it has been weeks since my last post, my health has not been the greatest. Tonight I will try to give an update and answer some emails before I head off to bed. So lets gets started….

MY HEALTH UPDATE…

So my wonderful Pain Pump STILL is NOT working properly. I can not even begin to tell you all how pissed I am. About every 48-72 hours I am up screaming for 6-8 hours in extreme pain, the kind of pain that makes you want to jump off a cliff. Lately I have been so tired of going to the ER, so I just pace the halls of the house, cry and scream until I am so tired that my body just shuts down. I hate what my life has become. The pain is so bad that I pray for God to take me and end this needless suffering. I hope the Dr figures this shit out REAL soon or I will be moving in with him….I will no more about my pump later this week when I see the Dr AGAIN. By the way I finally got a picture of the asshole causing me more grief….this was taken when the Dr was doing a study “test” on it……

A few weeks ago thanks to an AWESOME up and coming Dr, I was able to try  Ketamine. The first dose was a MIRACLE, for 48 hours I had little to NO pain. I did everything during those hours, I danced around the house, I went shopping with my daughter and I ate foods that I can not have. Of course I want to try more, I want to see if this is the drug that can help me enjoy what life I have left. The problem is, insurances will NOT COVER this medicine at ALL. (enter sad face here.) There is a Ketamine clinic here in Reno and I spoke last week to the Dr running the place. He said the trial is 8 infusions for $3000. I do not have this kind of money but I really want to do this trial. I have set up a “youcaring” account, CLICK  here .   All I am asking from everyone is to donate a $1.  All monies will go directly to the trial. Please Share with friends and family. I just want to the chance to see if it will work. Anything that can help my suffering is a good thing. To learn more about Ketamine and or the local clinic click here.

I am still doing the higher doses of chemo/biologic mix but honestly have seen not much change. I know I have said this before but I am tired….So tired of fighting my OWN body and getting nowhere.

And even though my body is torturing my ass…I was still able to dress up for Halloween and hang out with a friends for a few hours anyways……

 

YOUR QUESTIONS ANSWERED…

  1. I am having a hard time with negative thoughts and I do not know who to talk to or where to go.   I completely understand. First off I am grateful that you have reached out and asked for help, many people don’t. There are many online resources such as:  The chronic pain Anonymous, The American Chronic Pain association and of course the   SUICIDE LIFELINE
    Call 800-273-8255
    Text 273TALK to 839863

I also find that reaching out and making friends who have the same or similar struggles helps. I do not know what I would do without the “spoonie” friends that I have made. It is good to know that you are not alone. That what you are going through is NOT in your head. Your pain is REAL, your symptoms are REAL. Also for me, writing helps A LOT!!! Hang in there and keep reaching out…your hand will not go UN NOTICED!!!

2. Do you ever feel like your health takes away from really living and enjoying the regular things that others who are not sick get to do?

The answer of course is YES. My health has changed my life in many ways. I have gone through a miserable divorce after being with someone for many years. I have been pushed aside after being told I was everything. I have watched as others celebrated special milestones. I still sit and wait for my fairy tale that i dreamed of as a child. Sometimes I just sit and watch others living a life I could only dream of. True we all have problems the sick and not sick but I would give so much to just be “normal” have”regular problems.” To have someone love me so much that they want me by their side forever instead of just keeping me on their bedside table like I am lamp that can be replaced at any time. To really believe in people again, to have unconditional love once again. To have friends I could really trust and lean on..but most people just give me enough of them so that they can say they “did” something for me.  Like I am a charity case….

I would love to be able to train more at the Gun range. I love being able to protect myself and others if need be.

I would love to be able to travel again, i miss this a lot. I miss riding my Harley. I just miss being ME….I look in the mirror and do not recognize myself anymore.

So YES our health takes a lot from us! But one thing my health GAVE ME is that Life IS short and that you must live every second like it is your last. I took a lot for granted when I was younger and my health was better. I definitely STOP more and smell the flowers….and I am really trying to Stop Wishing things were different because…..

So hang in there…and try to find new things that you can do.. A few things I am trying to do is advocating for my disease,helping others push through their bad days with me and I am trying this new thing called…letting new people in my life and praying they don’t let go of my hand when I reach out for theirs….I will be sure to let you know how that one goes……

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I PROMISE TO GET TO MORE QUESTIONS LATER THIS MONTH….

 

 

BITCH SECTION……

I just have a few things to bitch about this week….SHOCKING i know 😉

THIS has got to be one of my favorite quotes. If you have been reading my posts since day one, you know why I love this! Sometimes people suck and they do awful things. I know I talk about this a lot but i get so many messages on this topic and I hear and feel all of your pain…trust me. If you haven’t read the “all about me” page, please do so….

Just know that you are not alone. I know what it is like to be tossed away like nothing. To be told that you are too sick to be with. Pushed aside when all you want is someone to hold your hand through it.

I UNDERSTAND your pain, and I am available any time to talk to you about it. I will not push you aside or dismiss your feelings. And I will keep talking about it in posts…because people need to understand what we go through.

Secondly..I just want to say this…..Just because you are feeling guilty, please do not tell me you care about me JUST to make yourself feel better………AND then go back to ignoring me or pretending I am not sick.

And finally to those who DM or email me nasty stuff because they are anti gun…..

 

There is zero point on arguing with peeps like you. Bye Felicia

 

FINAL THOUGHTS…

Even though this year has been the worst as far as pain and disease progression….I am still glad that I am alive. I know a lot is going on in the World today…PEOPLE killing PEOPLE and all that nonsense and it just breaks my heart because Life is SO short and it sucks that we have to spend it fighting with each other. Prayers to everyone mourning someone tonight…..

 

Dedication goes out to my other soulmate….Jigsaw….thank you for always being there and making me feel unconditional love…..

….See you and your brother at Rainbow Bridge….Mommy loves you……