You do Not have to love me, I already do!

First off I know that I have not written in almost a month but in my defense, I have been going through hell. Between my health and my personal life, I have been busy. And I have been waiting to come from a place that doesn’t feed off just anger….

I thought of all the posts before this one were tough to write but for the record..THIS one will be the hardest to date. If you have read the “all about me” post then you already have an idea of how my life with chronic illness has been and how others on my journey have treated me.

You would have read how my ex husband and I had found our way back to each other and what a miracle I thought that was…..well here is how that miracle went and ended…..

I have always been a forgiving person, I forgave him when he choked me, when he used my health against me and pushed me away…..i forgave it all….because I thought if I loved him enough, he would love me back just the same.  But after 10 years we threw in the towel, shit was hard on us, we were young and we had no one to help or show us the way.

Who would have thought that 5 years later we would find our way back to each other? At the time I think we both thought it was the greatest thing ever as we both had never stop loving each other. We had the kind of love that is so hard so describe. We always finished each others sentences and I always felt this magic when around him. And even though the abuse continued whether it be mental or physical(punching doors, throwing tables at me etc) I stayed because I convinced myself that with him is where I belonged. And I excused his behavior because I know how hard life can be taking care of someone with chronic illness, I blamed myself for how bad he treated me. I know this doesn’t make any of it right but its my reasons for staying. I think in my situation we had been together for 20 years, he was my person and eventually he would show me how he loved me more than just telling me.  But once again my sickness got used against me….he tried to run around all the reasons we couldn’t make it work but they all lead back to me being sick.  Funny thing is, he has his own health issues, but I never thought about leaving.  It is NOT who I am.  I love people unconditionally, all of us are broken in some way or another.

Worst part was how he shoved me out the door and replaced me like yesterdays newspaper. He said he loved me BUT………Enter excuse here…….then He kept saying all this would be “amicable” but everyday has been anything but that, but that is ok, I know it has to be hard for him to watch me not fall apart. Sure my heart broke but I have zero time to waste, life is way to short, so i just wipe the tears away, pull up my big girl pants, and keep walking forward and never look back. And every day it just gets easier…and that is how I know that I am doing it all right.

So I am moving on, all of us that are sick understand how hard life can be for not only us but for those all around us.  But it is ONLY a part of us, it is not all of us. When you push us away, treat us like dirt, try and break us….it is YOUR weakness, you are taking out YOUR pain, on us….and it truly is your loss. Nothing will ever make you happy and you will continue to bounce around until YOU fix the broken pieces of yourself.

Now that it has been almost a month, I actually think he did me a favor. He set me free from a cage, I could open myself because I was so blinded by what I wanted, by the person I loved more than myself.

I also believe that it wasn’t a mistake unless you didn’t learn from it. I have learned to never go back to what broke you in the first place, I am reminded that I do not need to cry myself to sleep because I am in so much pain I can’t breathe, I no longer need to beg him to take me to the hospital, I no longer am second to electronics, I am no longer a victim to his selfishness, lying or abusive ways.  The person I met 20 years ago and fell in love with is NO longer the person he is now no matter how much I wanted him to be.  This is the end of what miracle I thought we were given and all I will say at this point in time.

So today as I write this, a new chapter of my life has already begun….and I could not be more excited. Sure I am scared, every step I now take is new and my health has gotten worse But I know I got this. I often think of this bible verse Isaiah 43:2

“when you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

I still believe everything happens for a reason, we may not know at the moment what that reason is and I am ok with that. I have faith.

I have probably been “living” more these past 3 weeks than I have all last year. I have been going out and having fun…and parts of me that I thought were dead someone brought back to life and for that reason alone I can not thank this person enough.  I just wish my blood tests looked as good as I have been feeling lately. Surprisingly I have only been to the hospital once this month and that was due to internal bleeding and some issues with some new meds.

With all that said, I have to say a big Thank YOU to my RGR family. When it comes down to it, you have all been there for me in one way or another and I am eternally grateful. Alisha we are too alike, we have been through the same shit, we are both A personalities  which can make us butt heads and be crazy but when shit goes down, you pull me back to my feet…reminds me of the saying…

My RSO boys, you all keep me going, when I feel like giving up, you all hold me up and support me. You all rock and make me feel safe. Thank you

Ryan Thank you for your lips 🙂  and reminding me that I am beautiful and I still have a life to live……;-P  You “people pleaser you!” (wink wink)

To my moving crew ….I have no idea what I would do with out you…..it is however good exercise to move my shit a few times 🙂

Thank you Kim for all the laughs, fuck I am going to miss you so much…

and wendy..welcome to my post bitch LMFAO

Just THANK YOU ALL……..

Another thank you to those who gave me a place to live & a set of wheels to use…I am truly blessed!!!

Families will never be perfect, we will squabble, bitch about one another but I believe I have the most amazing non blood family.  All of you are my silver lining to all this mess called life. Many of you are amazed at how strong you think i am but truth is, I have a good foundation to stand on…you all.

On another positive note I have many projects coming up that I am super excited about and I pray my health can keep up with me. I am finally back to working on my book, I am sure this will make my publisher happy….LOL, I also have a 1776 photo shoot coming up in a few weeks, a project proposal I am working on and the online/skype support group for chronic illness goes live in a few months. See God doesn’t close a door without opening another one or in my case MANY…..

To everyone going through something……Keep putting one foot in front of the other  and live every second like it is your last! Cry if you need to cry, scream if you need to scream, feel the pain and then shake it off….. Sure things can get tough but until we are 6 feet under…..we got nothing but the  time God gives us…..use it or lose it……choice is yours…….Do not let others or our disease DEFINE us….XOXO

Childhood Scars

For some of you this post will be hard to read so if you are not ready to hear MY  truth…do NOT continue on…..

Child abuse is very familiar to me.  I could write a book of all the things I have survived,  but for this post, I am just going to briefly run through the worst of them…the ones that have affected my life the most and molded me into the person I am now.

My memories go all the way back to when I was 4. Boyfriends of my birth mother had their way with me a few times.   I also watched my birth mother be beaten and yelled out by several men.   My most frightening memories are being locked in underground wine cellars for punishment by my cousin, being pushed down the stairs (broke my collar bone 4 times by the time I was 6), being left at bars, being left with different sitters and my aunt and uncle even took me and siblings a few times. …I seriously could write a book on the crap the little ME survived.

Finally in 1st grade after watching my mom being abused for years and going through it myself, and “complaining’ and “acting out” as my birth mom said, I was sent to live with my dad who I did not know. This is when I learned that speaking out just got you sent away.

I lived with my dad and his new family till I was 15 when some “inappropriate” things happened. My dad held me down one time and gave me hickies all over my neck (like it was  funny,)(can you imagine going to high school with fucking hickies on your neck from your dad?????  To make it worse because I had nowhere else to go, after this incident was reported, the courts gave me back to my birth mother. Unfortunately she still didn’t want me, i just became a meal ticket for her because my dad was ordered to pay her support as long as she had me. And the reason I say this is because not to long after I was sent to live with my birth mom, I ran away and she didn’t report it to my birth dad until months later so she could still collect the child support.

All of the above affected the way I was as a teenager and I feel into a deep depression and became what I call a very “troubled” teen. My birth mom was always out at the bars living her life and rarely home being a parent. She chose the men over us all the time. I always felt like an inconvenience when all I wanted was for her to love me.  I was Torn between two awful worlds and just wanted someone to be a parent and love me.  To this very day l don’t have these people in my life….it angers me when I think about it, because I did NOT ask to be BORN.

At 16 I met this great young man who came from a good loving family. He respected me, didn’t expect anything from me, he was just awesome.  I should have known by then that good things don’t come my way…..LONG STORY short ….the captain of the football team liked me and he was very determined to have his way. He and the football team beat up my nice boy and undid the bolts in his trucks tires almost killing him.  Looking back now, what I did definitely came from my past of abuse/neglect, because I gave in. No one was there of a parent figure to tell me to do something differently. So I broke it off with this great guy and went out with this asshole captain of the football team.  Within the month the physical abuse began and what I know now as the “control wheel” began. This asshole smashed my jaw, threw me through windows, ripped my hair out, punched me  and one night forced me to have my first adult sexual experience from which my son was born.  For two years I took this abuse, the police tried to get me  to leave but every time I tried he would punish me some horrible way. He dressed me every morning, he gave me 25 miles a day to go to school and back, if I was ever over it he would punch me till I passed out. And just like the abuse wheel shows, you always get a gift after a beating and somehow this made everything ok.  He told me I was used, ugly and that no one would ever want his trash(ME) so don’t ever  think about leaving.  And this abuse was  before his drug use. When he started using cocaine, the beatings were worse; I have scars above my eyes and on my chin and they are all from him. The FINAL night as I call it, the only reason why he stopped smashing my head in  with the phone is because he thought he killed me.  The night  started with his friends over for dinner and someone asking me to warm their dinner  biscuit and he told his friend to chew the cold biscuit up and then spit it at me for it being cold. Of course his friend refused so he took it and did it himself. I began to cry so he started to hit me, his friends left and he dragged me to the bedroom and began to rip my clothes off and punch every inch of me.  I HAD it! I crawled to bathroom locked myself in and grabbed the shower curtain, opened the door and ran towards him with all my might hitting him with it. What I did not know about cocaine at the time, is it  allows you to not  feel pain. So he laughed it off, took the shower curtain and hit me along the side of my face then grabbed me and threw me against the bathroom tub. I have no idea what came over me next but I like to think it was God telling me to the stand the fuck up and get help. Next thing i know, I stood up and ran once again towards him and opened, my mouth, taking a chunk of his chest. THIS DROPPED HIM!!  At that very moment all I remember thinking was grab your son and call 911. I grabbed my son and went to the kitchen and dialed 911. All I remember next was the operator asking if I was OK. Apparently as the operator answered he grabbed the phone and began to smash the side of my face with it. Knocking me out cold, he thought I was dead, because of all the blood. He then ran off. I woke up to the police and ambulance rushing me to the hospital.  I will never forget the officer who was sitting by my side the entire time telling me to please leave and he would help me through the process. On a side note..the 911 call was so hard for me to listen to in court…you could hear me screaming as the operator was asking me if i was ok.**** I left that day but I was PUNISHED more than ANY physical abuse he could hand me because  A few weeks after he was found, bailed out and such he broke into our house and killed our cat with a base ball bat and smeared his guts all over the house and then hung my hamster with a twisty tie. But worse of it…..when all was said and done, He was given some visitation and on one of those days, he filed paperwork accusing me of being a bad parent and then ran off with our son for 15 years.  This is ALL I will say about that because I just found my son a few years ago and we are still trying to figure out our relationship.  And all of this is very hard for him as he was told all these years that  I left him and didn’t want him.  I shit you not, I have been to court more times than i can count. If it was not for Ray at Child Find, I would have never found my son.

NOW I know this all sucked, I know I lived it. But I have done several huge speaking engagements at Domestic violence meets. I was given grants to go to school because Mr. Reid attended one of my speeches and i was also a guest speaker for the soroptimists.

I  donate to woman’s shelters where woman are hiding from assholes like my ex.  I know what they are going through, and NOW there is MORE HELP for people. During my abuse, people closed their doors, ignored it. Shit his OWN FRIENDS didn’t call for help for me. If you are being abused right now, get HELP. Verbal, emotional and physical is ALL abuse!!!  Now even though I survived all this, at that time in the 80’s there was not much as far as help for my emotional side of the abuse. I had nightmares for years that he was going to kill me. I relived the beatings, I thought I was ugly. I struggled emotionally for a long time and still some days all I see is the scars on my face he gave me. I say all this because after working on my Criminal Justice Degree and taking a million classes on this type of stuff, I still drew in the wrong types of men in my life. I never learned the tools to love myself and only looked for someone to love me and to fill my loneliness because after all, I was ugly and someone else’s trash. Everyone I have been with since then has either talked down to me or physically hurt me. It is still something I struggle with and I make excuses for the abuse. I blame myself sometimes because I sometimes I think I deserve nothing else. I think maybe the main asshole was right, no one is really every going to love me. I mean why else would people continuously hurt me? No one is perfect but emotional, verbal and physical are ALL ABUSE.  Another TRUTH is…every TIME someone nice and sincere comes along; I bail on them, like I don’t deserve good things, as some of my best friends say.

I am still healing even after all these years. Trust me, now fighting a disease that is TAKING time from me, IS a HUGE eye opener and I plan on taking the risks I need to, in order to be happy and treated good. I am a good person,I DO know that now. I deserve to be happy and not experience any more abuse.

So with all this said when I read that some Dr’s are finding that women like myself who have gone through years of abuse are now getting these chronic/terminal immune diseases and dying early, I found it intriguing.  The Adverse Childhood experiences testing is very eye opening and makes a lot of sense to me. At a very young age, I was neglected, abused and abandoned by those who were supposed to love me. Truthfully I know the little Me is still there hiding in a corner. I have come along away, I have had tons of counseling, have done several EMDR sessions, art therapy and have done several speaking engagements in hopes that sharing my story will not only help me get it out but help someone else. More importantly I am praying that these scientists and doctors that believe that trauma affects our cells continues to work with people like myself and maybe someday they can find a way to change our cells back, if indeed that is what is going on.  Some people think that those doctors that believe in trauma cell issues are crazy but if you were in my shoes and didn’t want to die at such a young age or be stuck on chemo/biologic meds for years..I guarantee you would at least give it a shot. I have dealt with ovary cancer and now I  am battling 4 autoimmune diseases and doctors have very little idea on what to do for it except pump you full of poison meds and in my case put in a permanent pain pump hoping that keeps me a little comfortable while i await my death.  Like I said before I have nothing else to lose. My cells are killing me, I am slowly dying, my organs are being destroyed. It is time someone pulls me up from the darkness…….

It is hard when people tell me how STRONG i appear when inside I still have those cracks and those abandonment issues that were burned into me as a child and reinforced as an adult when the one person I loved outside of my parents abandoned me emotionally when I needed him most. He pushed me away, left me holding this big unknown luggage what was to turn into the disease that i fight today.  I still struggle when i catch people lying to me or stabbing me in the back because the “little me” stands up and just wants to RUN, because she CAN now. She may not have a plan of where to go but she can run now. She wants to pass her scars on to the ones that have etched them originally on her.

When you have survived as much as I have you really feel naked around others because everything that I believe most children should be given by those who are supposed to LOVE them is missing from me. I was never given that support, that shelter, that unconditional love, that somewhat solid ground.  I was taught love is just a word. And even though I try with all  my might to give everyone the benefit of the doubt, I still never really feel on solid ground.

Every time as an adult that I have tried to stand on solid ground someone has come by with a sledgehammer and destroyed everything I have worked so hard for. I somehow ALLOW these typed of people in my life and then make it OK to treat me exactly how I am used to being treated…..badly.  I seem to make excuses for these people like it must be how everyone is or maybe this is  what I deserve. This includes friends. Throughout the years I thought I had a few people I could always count on, only to watch them abandon me as well for one reason or another but mostly because, “I am too sick.” Whatever that means.  People always find an excuse to be a negative part of my journey.

Now that I am older I see that people can just be evil. But if I am to be honest, which is what this post is all about, i have to admit that I think if my own parents who created me can’t love me, then why I am surprised when others I bring onto my journey treat me in a similar fashion.  I have been in enough therapy to know that until you break the cycle that you will always look for the things you are missing. The things you think you need to make yourself whole. I often wonder what is so wrong with me, that you can’t just love me unconditionally the way I love you. Then i snap back to reality and remind myself that life doesn’t work like that.

In my health support groups I read all the time that I am not alone. A huge percentage of people come from abused situations whether it be by family or others which again is why I want to be apart of this testing.

Yes we are all warriors in one way or another but I want to know why some abuse cycles are set on fucking repeat no matter how hard we try to fast forward.

I don’t want anyone to feel sorry for me as this is NOT the purpose of this post but maybe it will shine some light on why I am the way I am and maybe why I am so sick, who knows right?!

One of my personal favorite things to say is, “I want my health to be the worst part of me.” However even to this day it is not. I still have a lot of healing to do and a lot of things to move on from. I need to STOP going backwards just because I am afraid of what may be ahead of me. I need to allow others onto my path that are “different” from what I am used to. Which is scary. I have lived many years in abusive situations one way or another and i have very little exposure to “positive” experiences.  One day I pray that my health WILL BE THE WORST part of my journey but until then I will keep pushing myself to believe that their is  some good in this world and that some people will NEVER run from my health issues, they will not take my love for granted and  more importantly I will believe in myself more than I do today.

 

Adverse Childhood Experiences

I thought that I would do something different this post and talk about a new journey that I have begun……………….

Lately I have felt so overwhelmed because I feel that NO ONE is doing much for my health except feed me chemo meds, biologics, steroids  and pain medication.  Between Big Pharma and  all my “specialist’s,”I am broke all the time and my health stays the same.  This fact alone drives me crazy. I am so tired of $1600 bills for 5-10 minutes of “Dr time.” I am tired of filling out paperwork to get assistance to help pay for my medications that cost $1135 a month. I am tired of it all. Health Care sucks.

All of this has prompted me to search for answers on my own.  Outside of eat this or that (which does not work for anyone,)exercise more, be positive, I have been reading a lot about Adverse Childhood Experiences and how trauma affects our lives including our health. For me this  makes complete sense so much that I have taken some steps to work on this part of my life. If you are curious about ACE and or want to take the main test….click on this link ACE 

Just like changing your foods, exercising, positive reinforcement and medication; ACE may not be your answer.  However for me, talking about my negative childhood/adult situations may be helpful and at this point anything is better than nothing. Until recently I had very little knowledge on how much trauma affects the body. To date, I have tested high on 2 ACE tests which has prompted me to really dig into this subject. Several physicians along with Kaiser Permanente have done research on people with autoimmune diseases, cancer and heart disease and found out that trauma in children and young adults leads to Chronic flight, fight or freeze states. The US National Library Of Medicine National Institutes Of Health in 2014 put out a publication that researchers of Yale found that when  inflammatory stress hormones flood the  body and brain, they alter the genes that oversee our stress reactivity, re-setting the stress response to a High. This increased inflammation, which can later  manifest to cancer, autoimmune disease and other chronic illnesses.

Some ACE facts are:

64% of adults have  experienced at least one or more adverse Childhood Experience.

  • The more ACE’S you have, the greater the risk for chronic disease, mental illness, violence and being a victim of violence.
  • People with an ACE score of 4 are twice as likely to be smokers and seven times more likely to be alcoholic.
  • People with high ACE scores are more likely to be violent, to have more marriages, more broken bones, more drug prescriptions, more depression, and more autoimmune diseases.
  • People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years.
  • ACE’S are responsible for a big chunk of workplace absenteeism, and for costs in health care, emergency response, mental health and criminal justice.  So, the fifth finding from the ACE Study is that childhood adversity contributes to most of our major chronic health, mental health, economic health and social health issues.

If you score high on the ACE test too, it might be something you want to look into also.  My opinion is this….what do we have to lose? I once read that all disease is multi factorial, so why are most Doctors only trying to fix our body and not our mind?

Do I believe this is going to fix everything….No but I believe that this process(which so far has been hard) is going to be helpful and if it does more than my expectations then GREAT. I want my body to know that I am still in this fight and that I am willing to do whatever it takes to make even a little difference because right now I am just sitting here waiting to die. This is no way to live.

With that said, I will be sharing my trauma with you all(IN THE NEXT FEW DAYS, in a dedicated post titled Childhood Scars,) for 2 reasons:

  1. I know it is hard for any of us to share such personal stuff BUT if my story can help just 1 person then everything that I am going through is all worth it….for the most part ;-P
  2. Sharing is therapeutic and  it is a part of my journey

If you want to share your story, please do….if you need my help, my hand is here to pull you up…You are NOT alone……OXOX

 

Others Effort

I thought I would jump on here and give an update….and talk briefly on a subject I am asked about a lot.

UPDATE

Some of my blood work has come back and everything and I mean everything is either low or high…

I have a Dr appt next Wednesday and one on March 1st. I have no idea on what the plan is yet…..Who knows what the Dr’s will do or not do. At this point I just feel overwhelmed and scared of what is going on inside my body. In the meantime I am still on the higher dose of chemo/biologic mix, which is making me miserable. I hate how much I throw up, the headaches are just awful, the internal bleeding is off the charts and I feel so exhausted. 

 

I know I have not been up to answering all the emails I get but I will try to get them as soon as I get some damn energy. However lately many of the emails I have read touch on the way people treat us. I know we talk about this quit a bit but it obviously is a main problem with the chronically ill. I think the more we talk about it,  the more we can comfort each other and maybe just maybe we can educate those who need to be.

So here is my advice….and trust me, this is hard advice, some I need to take myself…

First off NONE of US are PERFECT and Chronic Illness is NO JOKE. Life with us can be hard. With that said though us being sick in my opinion should be the worst thing we have to deal with.  Dr appts, poison meds, physical therapies, Er Visits, not being able to eat what we want, starving, vomiting, bleeding,blood draws, feeling fatigued etc SHOULD be enough negative for ONE person.Don’t YOU think?

I am sorry that some of you have crappy family/friends( i HAVE them too.) I think that we all need to take a moment and think about what we want in our lives. Is all this heartache worth it? Is this what we deserve? The truth is we need people like this…

and when they are not like this we need to be able to…

And I know this is easier said than done but..

In some of the emails I read that some of you are afraid to be alone while sick so you put up with people who do not treat you like they should. I get this 100%, it is scary being alone with out being sick so of course adding sickness would make it even more scary.  It is zero fun going to Dr appts or to the ER alone, I have done it before and it sucks. Being sick sucks and I do not know about you but I feel so helpless when I am alone. I feel like an abandoned child. Instead of asking what is wrong with the people in my life, I always ask what Is wrong with me? I am beginning to realize I have no control over how others will treat me, I can only control the way I allow it to affect me.

Just how we have to pick up ourselves from our health issues, we have to pick up ourselves when people knock us over.  The only difference between the two is this….our health we can’t change but the people we choose into our lives we can!

 

I love this quote….

I think that sometimes we get so caught up in this thing called life that we just settle..we settle for something “comfortable and familiar.”  This is Not living. Life is short as we know all too well. So forgive those who are not kind or supportive of us and then walk away….you never know what your future holds….

Just because we are sick that doesn’t mean that we deserve nothing else good in this life. Through this health journey I have had many ups and downs with who I allowed on my path. I sometimes find myself crying/hurt over who is and who isn’t on my path.  As my health got worse, I watched people run away or treat me not how I would treat them and I learned that it was easier to push everyone else away in fear that they too would run or begin to treat me differently. It is so hard to be told I am loved only to hear later on that my health is TOO MUCH, that I am to sick to be with OR lay here wondering why I am not loved……….my conclusion is that……

 

On a POSITIVE and Final note……

Enjoy the Good days, push through the Bad and choose wisely who is allowed on YOUR journey…

OXOX

 

 

 

 

 

 

 

Getting Too Dark To See

Tonight I sit here thinking of so many excuses on why I do not want to do this life anymore, not because I want to die But because I am so tired of all the pain, the meds, the doctors, the hospitals, the needles, the sleepless nights…TIRED OF IT ALL.

I have never felt so helpless, this shit just never seems to end and nothing ever gets better no MATTER what I do. I am so tired of doing chemo drugs that do nothing but make me feel like shit. I am tired of all the meds that are making my skin peel off, my hair fall and all the other not so fun stuff, I am sure you would rather not hear about. I am TIRED of these damn diseases that together are attacking all my organs and destroying everything in their path. I am tired of being tired, I fucking hate being in a bed 80% of my life, laying around is NOT LIVING, so why do I have to do it? I am tired of being angry at the doctors because I feel that I am just a number to them. they could care less that when I go home I suffer in silence. I am so tired of trying to get them to understand that you can’t just “treat” my diseases by reading out of a book. I need them to HEAR me. I know they can’t cure me but they do have ears to HEAR me with and if they just did this ONE fucking time they would hear my pain. Chemo and biologics are not the answer to everything especially when I have been doing this regimen for years….YEARS! I am not getting any better and the suffering has tripled. I am so DONE.

I believe God has a purpose for all of us, I just wish I understood what mine was, because my grip is slipping from his hand and I am afraid.  I want all this to end, my suffering is becoming to much for me and I am tired of pretending that I can do this.

Why does life have to be so hard sometimes? Why do we all go through the things we go through? I find myself asking these questions  all the time. I hate that I spend my days battling diseases that I am not winning or even getting a handle on. It is so time consuming and mind rotting. I just want a break even if it is for a day or two. I want to clear my mind and go for a long walk. I just want to breathe. I want to feel the wind on my face.

So it has been a few days since I first started this post. I had to step away because I felt so overwhelmed with how I was feeling. Today I definitely can say that while still scared, I do feel a little better than last week.  Sometimes when you get caught up in all the drama of your health, you lose sight of why you are fighting. Now do not get me wrong, I still feel the feelings, i wrote above but today I have the strength to pick myself up and keep going.

I guess in a way we ALL are heroes, We all go through shit…

We just have to remember to keep standing up and fighting. This life is a battlefield.

When I am consumed with all this scary health crap, I forget God said….

If you are battling with your health or something else tonight, give yourself a break! And If it is getting, “To dark too see” write or talk about it. You got this! More importantly you are NOT alone. All of you “spoonies” remind me all the time..OXOXOXOX

HEALTH UPDATE

So far all we know at the moment is that my platelets, RBC, WBC, Hematocrit are low and my liver enzymes are high again. I have more tests to take and a few Dr appts this month. I am hoping to know a little more in the next 2 weeks. I am still having some pain but my pain pump and oral meds seem to be working once again. Please pray they continue to do their job as I hate going into the hospital.

Today I actually went into work which felt great, it reminded me that even though my body is killing me, I am still in this fight!

XOXO

Big Girl Panties

This picture above explains how I have been feeling since the beginning of 2018. I feel like the New Year just slammed into me with ZERO warning. Last night I felt overwhelmed with everything….

My health just seems to be getting worse and I feel NO ONE is doing shit about it. Dr’s do not want to change the meds, all they want to do is up them.  I see my pain pump Doctor in 2 weeks and I am praying that we can get through to him that this just is not working for me. I am so tired of the pain….it keeps me up at night, it keeps me in bed during the day, it likes to be in the hospital, it loves to torture me and I am SO OVER IT.  My hair is still falling out, the skin on my face is peeling off and i just miss feeling beautiful.

I know that looks are not what makes someone “beautiful,” however we live in a society where being “beautiful” is pushed on women 24/7. We are told to be thinner, have long hair, wear gobs of makeup etc.  I have never been the type of woman who listened to what “others” thought I should look like however I miss looking how I want. I miss being able to go to the gym or go dancing to stay in shape, I miss having what hair style I WANT, I miss being able to wear very little makeup and feeling like  100 bucks. I miss ME. Somewhere along this health journey I lost me, I had to change myself due to the side effects of my disease and or medications.

UPDATE……This post has taken longer than I previously thought due to these shit meds!  Last Wednesday the Dr thought it would be a good idea to add another dose to the chemo and it took me out for 3 days. I spent many hours in the bathroom and in bed, that stuff makes me so sick and when they add to it, they make it worse. This completely sucks!

I am so tired of puking and feeling that dizzy shitty feeling. This higher dose of chemo meds had better do something amazing because the suffering is bullshit! If this is what is to come every gosh dang week, then I quit! 

 

These diseases of mine have been kicking my ass but the meds I swear can be 100% worse.  It really takes everything I have to keep going and if this is really how my weeks are going to be now…..I do not know if I can keep going like this….

 

 

 

 

 

I have also been going through some emotional shit outside my health. Lately a few people I thought I could count on ended up being like most other people who run the other way. I hate that those of us with Chronic/terminal illness have to get used to people coming and going. Outside of all the physical pain of my diseases, I hate this part the most. I hate trusting people, I hate giving people chances only to watch them turn their backs.

 

 

So with all that SAID, I am going to do a few things FOR ME…

  1. I am cutting ALL ties with people who do nothing but drag me down. Chemo/biologic mix will be the ONLY toxic shit in my life.
  2. I am going to search the COUNTRY for better Doctors. I do not know if they exist BUT if they do, I will find them!
  3. I am going to love me FIRST always. I recently realized i support others when I get very little back. I refuse to be put on hold while I wait on others. What I mean by this is when I feel unloved, I will go be around people who love me, when I feel alone and scared of what my future holds, I will  be around people who really do care and have a shoulder I can cry on.  My Time IS valuable!
  4. I will look for happiness within Me, not outside of me. I am going to try(body allowing) to do one thing for ME every week.  I definitely lost myself in this health crap. I need to find a way to keep picking myself up even when all I want to do sometimes is die.

5. Wear MORE lipstick…I AM a girl after all

 

I think for tonight that is all I got. Like I said the last 3 days have been rough, i have kept zero food down, until this morning, the last time I got UP and OUT of the house was today. And unfortunately for me(higher dose #2) chemo/biologic mix is AGAIN tomorrow….So if you pray, say one for me please!! This has been a long 5 years with this diagnosis and although I am grateful to that ONE doctor who FINALLY found out what was wrong with me, my life has been forever changed. Side effects of these diseases will kill me and it  will be before my time. I am OK with that now but it is this slow suffering that I will never be OK with.  It is ME time now…so until next week……XOXO Keep up the fight spoonies 

 

2017 In Review

If you are reading this….guess what you made it another year too! 

Ya ya, I know I am late posting my final 2017 post..it sucks being sick, sometimes you just do not get shit done……anyways………I hope you are proud of what all you have survived and done this past year……If I had to pick the hardest year to date since diagnosis, last year definitely was it……

My year started off OK. I had just started a higher dose of chemo but my pain patches and oral meds seemed to be working enough for me to be able to do a few things and make it to work. Then March came around and I went in for my 21st surgery(my pain pump) and the whole world as I knew it changed.

This was supposed to be the “best” thing for pain control in regards to a disease that causes 24/7 pain but it has turned into my nightmare. My disease has caused a lot of problems and stopped most of my dreams in their tracks. This pain pump has destroyed everything else. I went from the disease kicking my ass 3-4 days to not being able to move much for weeks on end. It took 7 months for the pain pump Dr to listen to me and remove one of the drugs from the pump that i KNEW was causing me tons of issues. Day one after the surgery everything tasted and smelled like metal and I gained 26 pounds within a few months. I still have the pain pump, see my Dr every 4 weeks for refills, I am back on oral pain meds as well, my spine hurts all the time where the pump is implanted and it is only costing 1300 a month….I hate this thing! PLEASE if you are considering a pain pump, look into it before doing it…..I know it helps some people but NOT everyone!!!!!!!!!!

The whole pain pump nightmare has made me even more miserable than before…if you can imagine that……HOWEVER several other things happened in 2017……

Our Gun range family got bigger, we gained…. Dan, Dimitri, Don, Ashley, Drew, Alisha and Nick

I absolutely love the RGR crew, they may not know but sometimes on my worst days, they truly give me life, they remind me to keep going and not to give up. Thanks guys

I truly believe God brings people onto your path for a reason..some people are meant to stay on it, some are meant to come and go and some stay for awhile and then go on to the next thing. I feel blessed for those few who have stayed on my path and helped me in one way or another.

Thank YOU Jaime for just listening, sometimes that is all I needed….and please .know that your fucking bitmojis always gave me something to smile or laugh about…..I wish you only the best in 2018!

And thank goodness my Marine Ryan is back…woohoo!! We have way to much fun together……….Laughter is good medicine!!

Sabrina, words can NOT express what you mean to me…God definitely brought us on each others path. I know it sucks but just knowing someone is going through the same shit as I am somehow makes it more bearable. God Bless you and your friendship.

Making memories are the only thing in life we take with us….SO make them!!

I spent roughly  32 days this year in the hospital…super thankful to my awesome nurses, Roco and Sabrina. I spend a lot of time with nurses and most have been complete asses so I am BLESSED when i get to  see Roco and Sabrina. Roco even when not my nurse will still come in and make sure I am taken care of…he is a Godsend!  Sabrina will go to bat for me if she thinks the Dr is not doing their job….amazing nurses those two <3

Even though I was busy spending time in the hospital and in bed, i was able to work a few days or more……..and since the meds made my hair fall out… I decided to have a lot of fun with hair colors.

My  health wasn’t the only thing that caused me  great sadness this year… I lost my oldest partner in crime…..Jigs

This really broke my heart because last year we lost his brother Haussen….They were the only ones who loved me unconditionally and never left my side.

These were MY boys..and they will be missed and I pray to see them again someday.

I had a few happy days this year as well. I saw my friend and favorite singer/songwriter Tyrone Wells. Tyrone Wells has been such a blessing in my life…I hope he knows just how special he is and how much his music inspires me to never give up on hope.  Thank you for coming into my life 8 years ago!

Your music inspired my latest tattoo….even though my body is killing me…I try to remember this  life is beautiful…..

FINAL 2017 THOUGHTS…

2017, I hope eventually becomes a distant memory because it absolutely sucked. I went through more trials than I ever thought I could and even though I came through on the other side I am TIRED. I am Tired of fighting with my body.  I pray to God every night to either take me or keep giving the strength to push through because this life although it has its beautiful moments is FUCKING HARD. Nothing I have ever gone through has been as hard as fighting my own body that wants to kill me….not hurt me but kill me.  I have never ever felt so depressed or wanted to die more than I have in 2017. Chronic illness and Chronic pain is so consuming and it demands to be felt in a way I wish on NO ONE.

I pray that 2018 brings people in my life who are not afraid to stick around even if that means watching me screaming, being poked/tortured by awful poison meds and praying to die. I pray people have more compassion towards others, truth is everyone is battling something. I hope that new Doctors come on board with new ideas on how we can fight my mean ass body. I pray God continues to hold my hand on days I no longer want to live. I hope those around me watching start taking nothing for granted….

I do not believe in New Years Resolutions because lets be honest, no one really follows through with what they say, however I am going to hold myself accountable with this quote:

And I am going to remember to do this daily:

So here is to 2018…I pray you all continue to fight, even if it is only for another second. You are not alone WARRIORS….XOXO

XOXO See you all Next year

Reason for the Season

 

 

 

Question for you all…….Why does God heal some and not the rest of us? Does this thought ever cross your mind in some shape or form? Sometimes I get so frustrated when I feel like I am doing everything I can to fight my own body but always come up short. Then I read these amazing stories of people who have stage 4 cancer and then miraculously are “cured.” Now do not get me wrong, I am happy for them, very happy but I wonder what is wrong with me, that I am not cured or at the very least feeling like I am getting somewhere with my disease, like the chemo and biologics are doing their damn job.

When will my forever happy ending happen? When will I begin to enjoy life again, will I ever?

Lately I have felt consumed with questions like this. I am overwhelmed with everything that has to do with my health. I am so tired of it running my entire life. There is NOTHING my health hasn’t touched and I WANT my life back and I want it back NOW.

Just this past week I went with some friends to see the new Star Wars and half way through, my pain was so bad.  I was shaking like those old “magic finger vibration beds.” It was so frustrating! Can I NOT enjoy anything anymore?

 

I am so tired of trying to find my “happy” place when all I feel like is the tide has ripped me from the sand and pulled me under. I am really tired of all the sickness and destruction these autoimmune diseases have and IS causing.

 

I am also tired of being asked if I am ready for the holidays? What does this mean exactly? Is someone coming over for the holidays, that I didn’t know about? Is my chemo/biologic mix going to give me a day off because my next treatment date falls on  Christmas? Is somebody having us over for Christmas dinner? Am i going somewhere? Are you going to put up my tree and decorate for me because I have zero energy? Are the people I miss going to visit? Is a cure coming my way?

If you can’t answer any of the above, PLEASE STOP asking me if I am ready for the Holidays.  Not everyone has HOLIDAY plans….

While I am on the subject of Christmas, I would like to thank Staci and her family for the awesome Christmas card! You make our  door not look so naked this year. Love you guys

While I am bitching about the holidays, I want to shout out to those of you who are not ONLY dealing with their health but are also going through relationship bullshit. Last Monday I took some time to read some other health blogs and unfortunately I read the SAME old shit….People are hurting because some people can be mean. I am so tired of hearing about us “spoonies” having to watch/feel others leave us. Why can’t our health be the WORST thing we are going through? Is having our Own body kill us NOT enough?

I just want all of you that are going through relationship bullshit to hang on and try to not let it destroy you. I have been through it, so I know what it feels like. I know it hurts when someone that says they love you and they will stand by you and then when you need them the most…they walk out the door…like you meant nothing and You are left holding your heart in your hands. 

One particular women on this blog i was reading, wrote about how she doesn’t date anymore because once people see how she can barely walk and is in constant pain, they never ask her out again, so why bother? This comment made me cry because We DID not choose to be sick. Do we not deserve to be loved because of our health?

Spoonies, you are worth loving…NEVER forget that……

HEALTH UPDATE

My pain has been about the same(HORRIBLE)….i have one good day then 2-3 crap days. I am noticing though that the chemo meds are causing me severe pain about 6 hours after injection and the pain lasts for about 10 hours and does not give up. I try to talk to my doctor about it but she doesn’t seem concerned…… She says, “Its poison your putting into your body….what did you think it would feel like……?! ”  And she loves to just UP my chemo meds instead of trying other things….

Then I have my pain specialist who thinks everything he does for me is a damn miracle.  Let me tell you this pain pump was SUPPOSED to be the best thing for me but has been my biggest nightmare this year. It was supposed to work so well that I would not have to see him but every 3 months to refill the pump and I would no longer need any pain patches and or oral meds….HAHA what a joke, I now need monthly refills on my pain pump and he has me back on oral meds along with the pain pump…..

I just do not get it! I put a lot of  my faith into these doctors who promise the world and half the time fail me over and over again.  I am so tired of people failing me. I just wish people/Doctors would not just HEAR me but Listen to me.

I am still internally bleeding which is soooo MUCH fun as you can imagine. The skin on my face and hands is peeling and inflamed, making me feel so damn self conscious. I know my disease affects all organs and skin is an organ but I just wanted ONE DAMN ORGAN to not be affected….

I know I sound all negative Nancy right  now but it better that I write it down than keep it in my head. I hate when I talk to other “spoonies” and they tell me that they are afraid to share how they really feel in fear that people will see them differently.  This is what I have to say about that…

Are they the ones feeling your OWN body killing you? Do they feel your pain 24/7? Are they the ones spending more time with doctors than friends? Did their lives CHANGE completely?

Something else I can’t personally stand is when other people who have my  disease or a similar one, and they blog like I do but mask what they are really going through….I KNOW what this shit feels like, I know what the meds do to us, I know how it affects us physically and mentally….so please don’t be fake. Show your true self, others will appreciate you for it! Sure we can have “good” days if that is what you want to call them…but I can guarantee that our “good” days are NOTHING like the Good days we had before we were sick……

The truth will set you free and will clear your mind of some of the stress that can be toxic and affect your health even more.

FINAL THOUGHTS

For me I have to remember the reason for the season and it isn’t all the cruel people in the world who ignore us or treat us like we are beneath them because we are sick. It isn’t about shit families. It isn’t about feeling left out. It isn’t about the cards, you didn’t send. It isn’t about the sorry, you didn’t say.  It isn’t about what I wanted this year and didn’t get. It isn’t about all the things I was promised to finish this year. It isn’t about dreams that were crushed because of the people we chose in our lives. It isn’t about feeling so alone battling this disease. It isn’t about my anger when others seem to get what they want but my life stays the same. It isn’t about what some get in 6 months and I never get.  It isn’t about my frustration. It isn’t about this damn pain pump I HATE. It isn’t about all the disappointments.  It isn’t about people I miss who chose to keep me at an arms length. It isn’t about people who have taken parts of me, i will never get back. It isn’t about all the Dr appts i had this year. It isn’t about all the hospital stays i had this year. It isn’t about lost friends or new ones. It isn’t about all this horrible pain i feel everyday.  It isn’t about all I have lost to this damn disease. It isn’t about all the poisons i do every damn week. It isn’t about the sadness I feel in my heart. It isn’t about how I am so tired of fighting my own body. It isn’t about me knowing I am fighting a losing battle with my health. What it is about is…..Jesus. I could care less if you are religious or not…….To me…..The season is still about him….not US. I am a child of GOD…and tonight I am reminded to straighten my damn crown…..because when I am falling apart the most(which is NOW)…..he will always have me in his hands…He will also be holding you…………OXOX

 

 

 

 

 

 

Life Disrupted

I must be honest and tell you all that it is taking all I have to do this post. I am unsure if it is due to one thing more than another..I just know that my head is consumed with so many thoughts right now and  I am having a hard time organizing my thoughts. However I have received so many emails about how to get through the holidays with chronic illness so here is my opinion on the topic. And don’t worry I will give you my health update before I sign off 😛

So….the holidays are always a sore subject with me because they always bring on more grief than joy.  When I look around during the Holiday season all I see is people running around with their heads cut off,  people being greedy and selfish.  I see very little compassion and love towards one another. And to be honest I was probably the same way until 5 years ago when  the ground beneath me collapsed. Now for the record I already had a shitty family who I kept at bay, so this part of my life is nothing new. But what changed was the people I chose to put on my path. The lesson I learned when I was finally diagnosed was that some people put  expiration’s dates on others.  Meaning that now I was too sick to be around. Like my life all of a sudden had no value because my body was killing itself.  Like I stood in some fucked up lottery line and walked away with the worst number combinations ever. Like I chose to be sick. Like I went to the Dr one day and received the worse news ever and as I turned around for support, all I saw was everyone’s backs as they walked out the door….OH wait…that is what happened…..all of a sudden I found myself battling my own body alone, broken and scared. Then you add all the “special, memorable” times we all love to be apart of like the Holidays and you can see how these times would be miserable.

After reading all the emails I have received this month,  I see how much I am not alone in my thoughts and experiences. If you are reading this and feeling these feelings too, you are not alone and I am so sorry that you have to go through this. I know battling a chronic illness on its own is hell and we have to  put everything we have into fighting our own bodies. We get no “breaks'” no “vacations.” Our health does NOT care whether it is our birthday, or thanksgiving or Christmas. It could care less. So why should anyone else care right?!

I absolutely love this drawing above because sometimes while I am doing my chemo, biologics, puking my guts up and internally bleeding that all I truly have is my own shadow and sometimes I can’t even find it. Chronic illness sucks and no one understands unless they are suffering too.

Many of us can’t eat for one reason or another, so just the thought of going out to a fancy meal with others seems daunting. Then there is the lack of energy, i do not know about you but sometimes it takes all I have just to get out of bed. So the idea of “hanging” out with others during the holidays just sounds exhausting. It all just seems so unfair.

With all that said I have a few ideas for those of you who were asking for some advice.

First off remind friends/family of you limitation whether it be food choices or lack of energy. I have even gone as far as bringing my own food to get together’s. I try not to make specific plans and when I am able to get out of the house I take it slow and do not go out for more than an hour or 2. I always have my cane and all my meds with me for those just in case moments.  I suggest making a “spoonie” outing bag. Also just be HONEST with others when you are at events. And who cares if people get mad because you can’t stay or eat what they have been cooking for hours….not your problem….kind of like how your health is not their problem….RIGHT?! and most importantly remember this….

For those of you who are “missing” someone this holiday whether it be due to a loss or because someone thought they were better off with out you……feel that pain, write it down, get it OUT and then take care of YOU. Your disease is with you whether you are miserable or  not…so why make it even more miserable? The dead are dead and the ones who aren’t around are not worth a second of your time.  Life is short…..try not to let others trouble your heart…………I know easier said than done……

On to my health crap….

Still doing this higher dose of chemo/biologic mix and still feeling like complete crap. Oh and the new thing I am dealing with is watching my own skin come off my face and hands. Still internally bleeding and my pain has been off the charts even with this damn permanent pain pump….I don’t get it and I am so damn TIRED

And in between wanting God to take me, I get to be like many of you and try to just PUSH through the holiday season like it doesn’t exist. I am beginning to hate this time of the year because I am reminded of just how alone and sick I am. I say this because there is no thanksgiving or Christmas dinners, and all the gifts I get during this time of year is all stuff that is for my health….Like all I want is fucking reminders of how sick I am…oh thanks for the warm socks because I have reynauds, thanks for the essential oils that may or may not help with my pain, thanks for the pillows to keep my bones from touching, etc……….I am sorry if I seem mean or ill spirited but it is like giving a woman an iron or a new dishwasher as a present or a man a lawn mower or suspenders…..

I would much rather get quality time with people than more stuff that reminds me of my shit health. Do you not understand that many of us are on borrowed time and fighting with all we have for another day, another month, another year…..maybe just maybe if you took some time out of your busy schedule, you could understand.  I wish I could explain my health more so that more of you could understand my point of view.

In my perfect world I would healthy, I would be working at my dream job, I would have the people I love the most all around me and I would let them know every moment how much they mean to me. But instead I have a body that is killing me, I can only work Part time because of my health, and most of the people I love the most are no where in sight and the ones that are around choose how and when they love me…….So forgive me, if the holidays really are not my thing. Life just isn’t as bright as it used to be, and there is not much to live for anymore when you find yourself backed into a corner getting the crap kicked out of you. You can only fight for so long….

Keep pushing through my spoonie family……find things to laugh at, find things to do, just keep going….through all my hell this month….I have still managed to make these memorable moments….

OXOX

December

Happy December?!

I hope everyone had a great Thanksgiving. My life has been hectic but I thought I would update everyone on what is going on and take a few minutes to answer some emails from last month.

 

UPDATE

My health is just escalating out of control. I just started an even higher dose of chemo and biologic mix and it is kicking my butt. I am not eating much and I spend a lot of my time now puking my guts up. I hate when you puke so much that you can’t breathe. My puke is also now a bright beautiful color of neon yellow. ******TMI picture below, if you do not want to see it, scroll RIGHT NOW past it****

 

I am not trying to gross anyone out but many of my readers are sick just like me and sometimes showing stuff like this ABOVE is helpful to others who may be experiencing the same shit.

I am also internal bleeding more than I was 2 months ago which really sucks and is very painful. My liver and heart have also gotten on board with being an ass. I always knew this crap would progress but NEVER in a million years did I think it would so fast. I feel so out of control, like the disease is NOW driving my body and I have no say on where we are going.

 

OK lets get to these questions, I have promised to answer…..

1. How can I better manage my frustration? To be honest this is a hard question to answer but I will tell you what I do and maybe it will offer you some comfort. When my health symptoms start to take over and I begin to feel out of control, I write and then I try to get out of the house….anywhere is better than sitting at home waiting to die. Pain can really affect your thinking so for me writing is a great way to get the negative out of my head…is it perfect and does it always work?….No but it is a good start….I hope this helps….Just do not give up.

2. Why do I feel like a stranger to everyone including myself?  Personally, I feel like a stranger because when I look in the mirror, I no longer see what I saw 6 years ago. 6 years ago, I was working on my bachelors in Criminal Justice, I thought we had figured out most of my health shit, I felt like my life maybe was getting back to something “kind of good.” And then with one damn fall and a Dr who refused to let me leave his office without knowing the real reason behind my legs giving out….I was diagnosed with something that would forever change my life. When the hammer(our health) falls on us it just doesn’t hit a part of us, it shatters and affects every part of our life. In my opinion we change not because we want to but because pain and chronic illness changes people.

I hate needles and now I have to do chemo and biologic meds every damn week which require needles, so I HAD to get used to them. I had to change. I used to worry about dumb shit and now I HAVE to let a lot of things roll off my shoulders because I HAVE NO TIME FOR BULLSHIT. Life is short and I spent most of my days suffering enough.  What do you see when you look in the mirror? Do you see the old you or the CHANGED you?

As far as people seeing you as a stranger I believe as I have said before, people retract when someone they care about is sick. They have no idea what to do so they  push you away because it is easier than holding your hand through it.  I find that most people just want to watch me from a far. They want to know I am still fighting however do want to be a part of the “fighting”path. It is just too much for some. When you get sick, unfortunately you find out who is really there for you and who is not.  My best advice..be a Morticia in a world of Barbies!

 

 

3. How do I get through the Holidays? I can’t eat much and I find myself just feeling alone while others are out and about enjoying life. This is a GREAT question. Holidays can be hard, I know this to be true! I think you need to not put so much stress on yourself, you are battling enough. Do some little things, have  a hot cocoa with a friend, write a letter to a friend or family member, buy yourself something (splurge a little,) maybe visit an animal shelter or stop by and spend sometime at the local senior center. I find it best if you distract yourself a little from how you are feeling at that very moment. 

As far as eating, when I go out, order something small like a potato or a small sandwich that I know will be OK. However if you can’t eat try a shake or something fun to drink like a citrus vodka 🙂 Just explain to who your with that you can’t eat much due to your health but for them to please enjoy their meal.  They should understand, if not….Fuck em

Remember we do not have to be like everyone else….it is like the saying….

Just make memories…in the end, it is all any of us will have…

 

Normally i separate my “Bitch section and my final thoughts” however this week, they are the same….

If I am to be honest, this picture above is EXACTLY how I have been feeling lately. It is taking everything I have to keep going. I am so tired of chemo, biologics, pain meds, antibiotics, steroids etc! I miss food, hell I miss keeping food down! I miss having a life..meaning I miss working more, I miss training more, I miss school, I miss making plans, I miss going on trips, I fucking miss it all. I am DONE with screaming all night because I am in so much pain and so frustrated that this permanent pain pump was SUPPOSED to be the greatest thing for me as far as pain control! I fucking hate it! I hate it all. I am tired of trying to be strong around others, faking smiles, pretending  to be the warrior many of you think I am.  I think people sometimes forget that because I write on this website/advocate for my health or they see me training and or working at the gun range, that I am not struggling everyday to live.  Truth is on those days, Sometimes i just push myself, I  choose to get up and put one foot in front of the other(no matter how much pain I am dealing with) which some days means writing on here, other days working at the range, other days training. But do not think for one second that I am not screaming inside and praying for it all to end. This life chose me, I didn’t choose it.

I know it is hard for some people who only see me when I happen to be out and about or working to understand what i go through because I am good at hiding it. I think many of us “spoonies” are very good at hiding pain and sickness because we have too. “Hiding” symptoms is something we all have to do at one point or another, if we are to lead any kind of “normal” life.

However, I am getting sicker and it is getting harder and harder to Hide. So i thought it would be good to get some video/audio examples to share. To do this,  I have been leaving my iPad on while at home so that I am able to share more of my life in hopes that people will see more than with their eyes.   This audio clip was taken the other night, this went on for about 4 hours(although lucky for you, this is just a minute and a half of it) and it is a good taste of what my life is really like….

When I first started listening to the clips, i was shocked to hear myself scream so much for someone to help me because I am almost always the only one up. I hope this small clip gives you just an idea of what I go through and if not, maybe next time you can go to the hospital with me? The hospital is always a good time with me.

I am so tired of watching time pass me by. I am tired of doctors and hospitals. I am just so tired. Tired of asking for help. Tired of trying the latest and greatest thing in hopes it will help me in some way. I am tired of trying to get others to truly care. Tired of people telling me I am a warrior and I must continue this fight(like they know what it takes to “fight” this shit.) Tired Tired Tired!

I honestly feel like I am knocking on Heavens door but God doesn’t want me just yet and this frustrates me to no end. Does he not realize how tired I am. Does he not see the pain I am in? Why does my suffering never seem to end?  My disease is continuously ripping me apart and I can’t do a damn thing about it…..I just want it to end.

I am so tired…

I fucking hope this saying above is true!

It gets real OLD fighting everyday and I hate when others judge me because I want to quit and give up. It is you who judge me that do not walk in  my shoes,nor do you help take care of me while i scream myself to sleep, puke my guts out, internally bleed everyday, put poison meds in my body, take me to the hospital and to all my never ending Dr appts.  It is not YOU who holds my hand when more bad news comes my way….

So don’t judge me…Don’t judge any of us, Trust me when i say, we judge ourselves enough!

May it keep picking my head up when all I want to do is lay it down. May it keep me thinking of reasons to not give up. May I continue to have the attitude of gratitude when I am able too…. Until next time spoonies and readers……OXOXO

 

 

 

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