Tag Archives: surgeries

Never Going Backwards

 

Sorry it has been a month since I have written but my body is being a complete asshole and that is saying it nicely.

I  want to share some of the bullshit I have been going through so you all at least know what is going on.

As if it wasn’t enough going through what my body has been going through, i also get to deal with people saying one thing and doing another. Here is some advice, take it or leave it…… DON’T OPEN YOUR MOUTH UNLESS YOU PLAN ON DOING WHAT YOU SAY!  I am DONE with words that mean absolutely NOTHING.  I have zero TIME to wait on empty promises.

There are only 24 hours in a DAY, use your time wisely. I spent 19 years in a relationship where my cats where more attentive and will be dammed if I ever allow anyone to treat me that way again.  This is for EVERYONE.  I will NEVER go backwards, a valuable lesson I have learned is that their is always someone waiting to spend time with you, so don’t waste it on people who do not deserve you.

Lately I have spent more time in bed than anything and it has been a reminder that my life is short and what time I have out of bed will be spent with people who actually want to be in it. PERIOD

I appreciate all the emails, calls and texts I have received during this rough patch! I am sorry if i haven’t gotten back as quickly as I would have liked but I choose not to spend all my time on electronics. I hope you all understand.

 

Some of you have asked about my last blood tests, I purposely have been avoiding them and this is why…. My last tests confirmed that I have the worst version of my disease, I am 100% seropositve. I do not want to go into details but if you are curious, look it up. It sucks, i have been so afraid to see this word ANYWHERE in my chart. But hey at least I finally know why my health has been deteriorating so quickly. It confirms why my pain is off the charts and why nothing seems to be helping.  So that’s the shitty news…..

 

So as you can imagine my moods have been like this….

 

This past month has been the hardest in a long time, I have prayed to die, prayed for help and prayed people pull their head out of their asses….because LIFE is happening RIGHT now and it hasn’t been a bowl of fucking cherries. I am so frustrated, I feel alone, I feel doctors are fucking idiots, I feel like i am wasting away and see no end in sight. I fucking hate RA, EDS and all the other little fuckers that are killing me!

I hope to write more next week until then keep the prayers, positive vibes coming my way, i need them more now than ever.  XOXO

Roses

If you truly know me, you know i do not like Roses. I think they are ugly  expensive flowers that die in a blink of an eye. But today I find Roses as a perfect title to explain how i feel in this moment.

I despise almost everything at this very moment. I feel ugly and i am filled with so much despair.  I feel like a bubble has swolled me whole and i can’t find the needle to pop it so i can breathe. I so desperately want out! 

The bubble represents everyone/everything in my life. I live mostly the way others want me to live.  The Dr’s tell me what to eat, what meds to take , what i can and cant do. In other areas of my life people set goals for me then do everything in their power to make sure i fail. They stand in my way or give my goals to others, others who are NOT sick. In personal relationships this includes friends and family…i do what makes them happy as much as I can even if it makes life harder for me.  I feel like what I want rarely  matters. I feel like I am not worth anyone taking risks with me, like they “settle” because they know eventually i will be dead. 

I Am not writing all this to get sympathy, or make anyone feel sorry for me, i am writing this to get it OUT of my body & out of my mind.  I have enough poison in it. If you know me or follow my posts, you know i try my best to be positive but everyone has a breaking point. I am having one of those now. I have hit a wall. With all this new medical bullshit going on with me and no real answers i AM fucking scared and frustrated. And I am truly alone in it. I am the ONE going through it. 


This Daudet quote is DEAD on! I could not say it any better! 

I know many of you mean well by saying things like, this to shall pass, it will get better, i am thinking about you etc But the truth  is you are just saying these things because you have no idea what to say so you choose these words in hopes it will comfort me in some way. (I also know there is a time and place for these sayings such as you have or are in a similiar situation and you are sincere in saying what you say, then by all means say it)No offense to anyone but i would rather hear… i will be here if you need me AND then REALLY be there!!!   Because if i had as much help as people offer me I wouldn’t feel so emotionally alone. I know everyone has a life to live but I am here to tell you to think before you speak. If you really want to help great  if not zip it. 


For those of you who are on the “fence” with me meaning you like me in your life but don’t see a future with me…this can be personal or professional….figure your shit out before i make the decision for YOU! I am done with what you say then do the opposite! My time IS fucking valuable….as is yours! 


Being around me or with me for pitty or you feel sorry for me is bullshit & I deserve much  more. Do not think for one minute that there are no other people in the world that would take my sick ass on. Outside of my health i have a lot to offer. I am a good person and i love my friends and family with everything i have… i give 100 if you give 100. Try asking what I want in life and LISTEN. I want everyone to be happy. It is called compromise, try it sometime. 

For  the people sending me messages about how beautiful i am and how my health will get better… FUCK you.. are you serious? What the fuck  does my looks have anything to do with someone finding a cure for my disease? If i understand you correctly… i should be healthy because of my looks? (Yes i am a total babe puking and shitting my guts out..picture below is for you, this is sick me, i am not just the renogunsgirl you like to drool over) Like only ugly people should get sick??? Sounds like you got your diploma out of a cracker jack box….



To sum this week up… i am extremely frustrated with the way everyone is dealing with my health… i would love it if Dr’s took compassion classes and really took time to help instead of just passing me on to the next Dr who will also treat me like a number. (Side note, pleas do not try and school me on how Dr’s really do care and how i dont see their side blah blah blah.. i have been doing this shit for a long time, i dont judge blindly and when i do come across an amazing Dr i give them credit) I want friends/family/professional to be more compassionate. Really mean what you say or just be quiet. Like i said get off the fence. Tell it like it is I can take it. I would rather be hurt with the truth than be continuously drug through the coals. Do not for one second think I don’t know what you say or do just because I am not always around. I have eyes and ears everywhere. People talk, it is what we do. 

I know i can talk and write till i am BLUE in the face and some people will still  never understand but i hope and pray that we can all come to some understanding. Please take what i say  to heart, it is not meant to be rude it is just the truth as I SEE it. Battling several non curable diseases and listening to the Dr’s explain how one is progressing and attacking my organs is so tough for me to hear. And to add to that now i am being poisoned by either one of my poison meds or something else my body is destroying. I just want to crawl out of my own body and run far away where my body will never find me. I ask God all the time why i am still here. I sometimes can’t see past my health, the pain and frustration of wasting days in the bathroom or in bed really affects the way i think. I want to live but my body wants to die. So every minute it is a struggle. And no matter what my struggles are,  life still goes on, i have to work when i can to pay my bills, i have to take care of my fur kids etc. Life doesn’t stop because I am sick. I get zero breaks. Don’t be upset with me or do waste time being mad at how i feel.. it is your life but truth is…I pray God eventually hands me the needle…..this isn’t beautiful anymore….