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Have you ever felt that you have nowhere to go, nowhere to hide, nowhere to run, nowhere to escape…like the whole word is turning in on you? Chronic illness often makes us feel like we have nothing left and that no one is listening to our cries. For me it feels like what the fuck else could happen to me? I have already given up on almost every dream I could ever have. I have had to walk away from my Bachelors in Criminal Justice, I have had to walk away from dream jobs, awesome opportunities and if that wasn’t enough, I have watched people push me away, “because i was too sick.” But if you follow my posts, you already know that……you know most of my tragic story…and while some of you have no idea just how bad as is, most of you know all to well….because you live a tragic life too…..
Sure not all of it is bad, in fact I personally believe the sick Live more on the good days than any “healthy” person does, only because the sick learn real quick that time is not on our side and that every “good” moment must be cherished. I hope that if you are lucky enough to have your health, that you LIVE every moment. Take nothing for granted, because it can all be gone in a blink of an eye.
These past few months my diseases have been the BOSS. I have had very little control, everything that could go wrong has been going wrong. It has taken everything I have to keep going, to keep picking myself up, to keep giving myself reasons to live and fight for one…just ONE more day……
Everyday blends into the next and sometimes I can’t tell my left foot from my right. I just want to throw in the towel, I pray for God to take me, to end this pain. People ask me if I could just have one wish what would it be….I want to go Home, I want to be with the one person who always loved me unconditionally, i want to be with my grandpa….
I have suffered enough, I am so tired…..The Doctor appts, the meds, the pain….oh the PAIN. It is all so exhausting…..the wearing of 2 masks(the one around others and the one at home.)
Just like some of you who may be reading this, I too am so TIRED, SO DONE with everything illness brings our way. And even though it has made me take nothing for granted and try to live every second to the fullest, I fucking hate the way it rules over my life even when i fight for it to take a back seat.
Nothing ever goes as planned when you are sick. I can never make plans, shit I don’t even know what days I will be able to work each week until the day of. My body is the Boss. My body tells me what i can and can’t do. This makes life so hard! Bills do not pay themselves, my Doctors do not do house calls, friends get tired of asking if I can come out and play……Life for ME just stops because my body says so….. while all of you keep living……I can barely remember working 40 hours a week, riding a bike, hiking, running, bar hopping, LIVING…….Sure I am good at faking it, i can fake a smile, I can fake it through pain levels 2-7 especially at work……but 8-1 million I just want to die, not because I want to but because it is the only way I know that will make the pain STOP.
I so desperately want my back and legs to sleep, I want to stop all the meds that make me internally bleed, puke, feel dizzy, feel depressed. I just want the world to be quiet for a minute. I want to feel normal however I have forgotten what “normal” feels like.
Every year just seems to get worse and worse. I know my main disease is progressive but does it have to be so fast? Why can’t I get a break?
Why any of us? I am told that people learn from those who suffer?! That if some of us didn’t suffer than no one would know what compassion was?! What the fuck does that mean? Compassion huh?! Then where the fuck is my family? Where have all the people gone? Why is my door a revolving one? Why have people retracted when compassion is supposedly one of the reasons I am suffering? Do you know what it is like for people who say they LOVE you to leave because you are sick? SOMETHING YOU CAN NOT CHANGE????? Tell me where is this compassion you speak of?
“I can’t watch you die,”” I don’t want to be a widow,” “this is just so hard to watch you be so sick,” “but i love you,” “we can’t be friends anymore, this is just too hard,” “I want to be there with you but…..(enter bullshit here),” Your sickness, Is making me sick too,” “we can’t do anything because of your health,” “if you just try this (enter crap health shit here),” I wish I could be there for you because i love you so much………..
I have heard it all like many of you other spoonies. It is so easy for people to just give you an excuse for their absence but for US we can never leave, it is a never ending battle. So all the cutie pie sayings like the “compassion” one I call BULLSHIT. I also call BULLSHIT on people who say they are FAMILY or FRIENDS but are RARELY or NEVER available to help in the darkness but want to celebrate you in the light. #fuckyou
So if I haven’t told my spoonie family in awhile THANK YOU for carrying those buckets of water for me lately…I am sorry….thank you thank you thank you….thank you Sabrina, you remind me to never give up and keep hope that God has this! Thank you Kathleen for reminding me to smile and that it does not matter what time it is, you are there. Thank you Beth for helping out a fellow spoonie! You understand the struggle and I am very appreciative 😉 Thank you other spoonies who would rather not be named or keep a low profile…..I see you and I am grateful……I know I am not alone……..
I just wish there was something I could do for myself, I think this has been the hardest thing to get through my thick skull….I can’t cure my body……
I can only keep picking myself up and praying God hears me….
Until then this is MY life…
and days like this….
will be my “SPACE”
May I have…. and continue to be the QUEEN I know I am..
I think through it all we just need to remember that we all have a purpose…..and that even broken….We ALL are worth having……XOXO
This post is going to be a little different as I want to touch on the events of October 1st.
I do not want to go into it to much as I feel we all could use a break from this horrific event however, this event has weighed heavy on my heart and it helps when I am able to express things like this via words. A few friends of mine were at Route 91 Harvest and witnessed the horror we now call October 1st. I am so blessed that they are now at home and safe! You never realize how important someone is to you until you almost lose them. Sometimes I get so caught up in my health shit that I don’t think that anything else bad could ever happen to me. This was a big reminder that shit can always get worse. Alisha and Derek I am so grateful for our friendship. Love you guys 🙂 Take NOTHING for granted!
On to my health update…
I am so tired of people asking How I do it…..Does this answer the question?
All I really want to say is……
I can not believe how much pain I have been in lately. I am tired of Epson salt baths, hospitals, pain meds, heating pads, screaming, kicking and begging God to take me now.
My pain has been the reason why I have not written in a while. I barely make it to work. And when I do go to work, my body kicks my ass afterwards. I am so done dealing with this shit. It is so lonely. No one gets it unless they have the disease. I have been looking for a way to explain how i feel and this picture below kind of explains it…..
My body never lets me out of the jar. 🙁
Then I go to the Dr’s and no one seems to give a shit that I am internally bleeding and in more pain than I thought was possible.
Sure my pain specialist has turned my pump up but it has not helped at all. I keep telling him that this medicine in my spine is NOT working but it goes in one ear and out the other. And my disease specialist just says…..”lets up your chemo drug dose.” OH OK ya that sounds great…..I really wish I could touch them both and they could feel a moment of my pain and frustration. It is really hard to go through all this and mentally keep positive. The doctors wonder why suicide is high with chronic illness/pain……GEE I wonder?????!!! Speaking of suicide, next month I will be doing a post all about suicide/mental health/where you can get help and where you will not get any help, chronic illness and suicide and a whole lot more.
I promise to get to questions that some of you have asked next week, this week I am still in so much pain and it is taking all I have to write this much. I just pray we all make it another second, another minute, another hour, another day.
AND just in case you need a meme to those you wish would shut up and stop telling you what they would do if they were sick like eating this or that….
Until next week……….Hang in there spoonies…….Much love