Category Archives: Daily Diary

Just what it says…this will be where I BARE ALL…

New Beginnings

 

So many people I have talked to lately are going through some tough times and are having a hard time adjusting to one thing or another. I thought because I too have been going through some stuff that I would share how I have been able to push through.

For me I have had to make some tough decisions whether it be personal or health wise. I find it never to be easy but when shit hits the fan, I have found that if I just push my feelings aside and just keep putting one foot in front of the other, i do ok.  Then when I have a moment of clarity, I let my feelings surface.

In my opinion no matter what you are going through, you have to do 3 things:

  1. Never give up
  2. Act Smart
  3. Remember who you are

 

Never Give Up

This is important! Nothing others say or do is because of YOU. So take second by second and don’t over do it! Remember everything YOU Do and don’t do will affect your health.

 

Act Smart

When you are going through things, sometimes we lead with our emotions. Make sure to keep your emotions in check. Be the bigger person if someone has hurt you and do NOT play their games.

 

Remember who you are

Do not let others affect how you feel or think about yourself. The only opinion that matters is YOURS. You OWN your feelings.

 

 

I know life can be hard and sometimes things just seem to never get better but you must continue on. Find something to keep you busy. Find out what YOU love to do not what others want or think you should do.  Life is too short as most of you already know.

So get out and LIVE life!!! Push through the bad days to get to the GOOD days!  Enjoy all the NEW BEGINNINGS!!

XOXO

The Road I Now find myself on

 

 

Tonight I am going to try to get some of the emails I receive answered.  I will also give a health update.

 

It has been 9 weeks since my life took another twist and I was once again thrown onto a new path but so far I have been able to keep one foot in front of another. I think it is important to share my story in hopes that it continues to push me forward and help others who may be going down the same path as I find myself on now.

Lets get straight to the emails and then I will share what has been going on with me and what is next for me.

1. I have been following you since the beginning and I am always amazed on how you stay positive, how do you make it look so easy? 

First off thanks for following, I love to hear from you all! To answer you question it is NOT easy to stay positive through any of this thing called life. To be honest none of this has been easy.  For me I have had to force myself to keep going and to not look back.  And when I find myself starting to look back, I quickly remind myself to keep looking forward because there is NOTHING behind me worth turning around for. As far as my health I have do the same thing…always look forward because stopping and feeling sorry for myself or stressed out about my health gets me nowhere but wasting valuable time.  Thank you for telling me I make it look easy but it could not be farther from the truth.  my advice to you is just keep your EYE on the PRIZE in FRONT of you as much as you can. Never give up on Yourself EVER. This life is for YOU, no one will make you happy but yourself.

2. How are you taking care of your health and emotional state now that you are on  your own?

This is a great question. At first it was super hard to ask for help. I am an A personality and it took all I had to ask others for help. But now that I have, everything has come together as good as it can be.  I have learned how much compassion others around me have especially the people I work with. I feel extremely lucky to work with the folks I do.  Many people have stepped up and offered help with Dr appt visits, hospital visits and so much more.  On a personal level, I have also learned to lean on my faith more than I ever have. I pray to God every night and thank him for the blessings I have and the ones I know are to come. Since I am on the topic of God, I just want to throw this out there….( a couple of my friends although supportive of what I am going through have mentioned more than a few times that I should be mad at God for allowing me to be continuously sick and then allow people like Brian to treat me like he did.  Everyone has a right to an opinion and here is mine in regards to the above…….I am not mad at God, he isn’t the one making me sick or treating me horribly, He is however the one who made sure I had good people in my life that were able to DROP whatever they had going on in  their lives to help me with all that I have needed. I am not going hungry, I have a roof over my head, I have transportation and my life is so full of laughter and joy right now….who else could have made that happen in such a short period of time?!)

So to sum up an answer to your question, I pray, I put one foot in front of another everyday, I keep up with all my medical crap and I PUSH my self to find something positive each and every day.  Sure some days are harder than others But I never give up!

3. Have you been able to look back on the last year yet and see your life in a different light? Do you think you settled with the life you had because of your health?

YES YES and YES!!! It is funny that you ask this question because the other day I had to go back and find some “info” that I needed for a project that I am currently working on and I was able to see through clear eyes the life I had settled for.

I think many of us who are battling our bodies everyday find our selves settling for one thing or another.  In my case I found myself feeling “comfortable” with crying myself to sleep every night, I had accepted that even though someone was lying next to me every night, I WAS alone. I settled for relying on others to take me to monthly Dr appts, to the hospital and worse than those two put together….I settled doing chemo and biologic”s on my own. I had convinced myself that in order to keep the peace at home, I had to only be “sick” when it was just ME, when he was around I had to fake be healthy or at the very least feeling good. I HAD to become 2 people and in the process I lost who I WAS. If you are finding yourself in a similar situation, take a good look at yourself in the mirror and if you do not recognize your reflection, you really need to make some changes.

 

4. Hi, I am currently going through a divorce right now and I feel so alone and lost. Will this feeling ever go away? Is there hope for us that already have so many issues in life like bad health? In your opinion do we really have a future? Will anyone ever love us, all of us, including our health?

I actually received several emails asking the same thing. I will try my best to explain how i feel on the subject and hope you all can take what you need from it.

First off my heart goes out to any of you going through breakups/divorces etc. I truly feel your emotional pain. In my opinion I think people throw in the towel so quickly anymore. We all stand before God and make these vows to always be there for each other NO MATTER what and then find out the vows were empty promises. And then when you are dating, people will love all what you bring to the table, but then later turn there back on you for the very things that they fell in love with the first place.

It is like people are always looking for the next big thing. Or for greener grass..when the grass will ALWAYS be greener where YOU WATER IT!!!!!    With all that said, you can’t take anything personal, because what others do and say is THERE MESS NOT YOURS and you have to find a way to remember this.

Feeling alone is completely normal, they say that any relationship that ends is like a death and you will find yourself going through all the emotions of mourning. I think that being alone with yourself can be very beneficial.  It is those who jump relationship to relationship , within days are those who will have issue after issue because if you do not give yourself time to “mourn” over the last relationship it will sneak up on you at some point and when it does…..it will affect the new relationship you have taken on…i GUARANTEE IT.

As far as a future, I believe each and every one of us has one. We just have to keep going and always put one foot in front of the other. Do not spend your time waiting for the “right” person to come along, I believe that the “right” person will come along when we least expect it. So spend your time doing stuff for you, make your self happy and when you do the “right” person will come along. So take care of YOU. I know there are people out there that WILL love us, all of us, I have seen it. So do not give up.

MY HEALTH NEWS

For the most part I have been feeling ok.  I have even been able to get out and do a few things which is GREAT!!!

Of course i am still having the usual pain but nothing I haven’t been able to handle(most days). However I had to do my blood tests this week and so far 2 have come back bad. my cell death has more than tripled, it went from 32- 122.  So last night I had to do the highest chemo/bio mix I have ever done and it kicked my ass.  I woke up several times during the night screaming out in pain and it is nights like this that I wish God would just take me. Not only did I wake up today with a lot of hair on my pillow, I felt like a truck hit me. I have been dizzy and running hot all day. I hate how these meds kill both the bad and the good cells. This is no way to live life.

My next Dr appt I am going to beg that we change the meds. I can NOT keep doing this. I am miserable and it is not working anyways, the blood tests prove that.  We are still waiting on 2 other blood tests but at this point I am sure they are bad. But with that said, I am just going to pull up my big girl pants and keep FIGHTING, I have no other choice! This IS the road I am now on and I must keep walking down it. Warriors DO NOT QUIT.

Thank you to those of you who are always my support system, you all keep me on my toes and remind me of why I continue to fight!!!

OXOX

The Power of Friends

I have been trying to get back to writing weekly but as most of you know, I have had to take time to rebuild EVERYTHING. But Today as I write this I have never felt better about where my future is going…..so lets get this post started!

First off I wanted to say THANK YOU to ALL of you who have stepped up to help me with what ever I have needed this past 2 months. You really find out who has your back when shit hits the fan. No words could ever express how much you all mean to me.  Thank YOU. This website is a very big part of my life so whether any of you like it or not….I have a few things to say to you all…..and would you expect anything else from a writer?….I thought not….so DEAL with it CODY….I know it will be YOU who will roll your eyes…..

Alisha you made sure even while in another country, I had a safe place to go to and you have been there by my side ever since. Thank you so much! Girl power!

Rebecca and Sarah You two GOT me through the worst week, from pizza to face masks to Songs that forever changed my thinking….thank you both

Derek and Eric thanks for being my moving company a few times *Wink

Julie, Rodger, Kristina and Bill…..Thank YOU! My heart is so overwhelmed by the generosity of the 4 of you…I really have no words…Just Love

This next group of people I want to thank I consider my family, I see them more than I see anyone and when my world was torn apart, they all came together to see how they could help and to me that is family. So thank you Jarrett for your gift because that is really what it was. Cody and Whittney I know I thanked you both but this website is where i bare my soul and it wouldn’t be right if you both were not a part of this post. #shoppingwiththewalkers 😉

Thank you Ian my work hubby….You let me escape, drive fast and I know you would do just about anything to make sure I am ok..I love ya

Moses, Steve, James, Dusty and Ashley(ASH) LMFAO…You all push me forward and keep the days full of laughter……..

Kim I will miss our snapchat pictures….guess I will have to find a new victim……Wendy are you up for the challenge?! HAHA 😉

Thanks Delia for keeping me beautiful and for my awesome spoon flowers!!!!

And finally to the person who keeps a smile on my face…..Ryan

I am so grateful to each and everyone of YOU!!!

HEALTH UPDATE

So here is the crap news…..My CRP, inflammation and blood pressure have all been awful. I now have inflammation around my heart, my blood pressure is very low and my CRP is through the roof. I have been off one of my chemo meds for a little over 3 weeks now and unfortunately the Dr said I have to go back on them next Monday.

I will be doing blood tests every 3 weeks so that the Dr can watch how much the progression is destroying my body…So we shall see what happens.

I am trying to find the positive in all of this and the only thing that keeps me going is the Dr’s originally said I had 7 years to live and I have flew right by that number!

So until my body quits I will just keep showing it who the boss is!

To everyone battling something now, know that you are NOT alone! You got this shit! Do NOT ever give up!

Next week I will try to get to everyone’s emails…..until then keep Fighting <3

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

 

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