Tag Archives: spoonies

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

September Madness

 

I know 3 weeks ago, I promised to go more in depth in regards to chronic illness and relationships, however my health has unfortunately taken a turn for the worse. These past 2 weeks I have been in the hospital, so my post on relationships has been pushed back but I promise to get it done by the end of the month.

Due to the overwhelming messages I decided to write a little post about what is going on with me.  My cell death and inflammation around my organs is at an all time high right now. It appears that the chemo and biologics are doing absolutely nothing except making me miserable. Which in turn makes my pain go from a 6 to 1 million. No SHIT. The pain is so unbearable that I find myself praying God just takes me. With that said I have been in the hospital a LOT.

Thanks Brian for being my Javier to my Letty 🙂 Nothing is ever perfect but it always seems to work itself out……

I would like to shout out to Alisha who has become a really valuable player in my health crap. I am so grateful to her for taking time to help me. Although I think next time Alisha, You will be required to pick me up on the scooter…I mean it just makes more sense than riding in your truck….HA! * I promise not to  pee*

I also would like to thank the BEST NURSE ever, Rocco. Rocco is an amazing example of what a nurse should be like. I spend at least 70% of my life in hospitals and he is the only one that I have ever met who has so much compassion for his patients. He always goes over and beyond.

He will rub my hair until I feel safe, he will do whatever it takes to make  me comfortable. I am NOT a number, to him I am a person. When you are sick like I am, being a person to those taking care of you, is one of the most important things. So many treat us like numbers or like paychecks.  God definitely put him on my path for a reason. I really love this man, he has been taking care of me for over 8 years. I pray all of you battling your illness/disease have at least one person like Rocco on your team, it does make all the difference. If I ever win a million dollars, I would send him and his family on a dream vacation. 😉 No one is more deserving.

I also wanted to touch a little on the dark side of dealing with your body killing you. I know last month I touched a little bit on the Suicide subject because it unfortunately is a huge part of the chronic/terminal community but these past weeks have been the worst for myself. I think it is important that we be able to express how we feel and not have any repercussions. Like I said last month, your thoughts are normal, this life IS hard. The pain, the Dr’s, the hospitals, the lack of support, frustration etc it is REAL. I hope that all of you going through it, keep pushing through it. I have my days when I am just DONE, but I pray that God brings me/all of us through it. Lately life has been really hard on me because I feel that everything is now beginning to slip through my fingers. Everything that the disease to this point has not affected is now affected.  I feel so empty and so vulnerable. I often wonder what the point of my life is?! Some days I can answer this question and some days I just feel so clueless.

Last week I had an appt with one of my specialists who I know hears me but really does NOT listen. It took all I had but I told him that I AM DONE, I will NOT live like this anymore, so he needs to help me figure this out. I am still unsure if he was  completely listening or not but I see him again this Wednesday to change some of my meds that go directly into my spine via my pump. Only time will tell if this will help, if it does not then this….. was for NOTHING.

I told my Dr……

I also see my disease specialist this Thursday because this chemo/biologic mix IS NOT working and we need to look at more aggressive(like the shit i already take isn’t ) treatment options.My disease at this point is winning. My cells are taking over and attacking all my organs, If it continues at this rate, I will not survive much longer. I try not to think this way but it I see my body deteriorating. The internal bleeding is insane, I would show you pics but do not want to freak you all out. The weakness that has always been apart of my disease is extremely overwhelming now, I barely make it up to go to the bathroom anymore. I am lucky if I make it work 1 day now. As I said above, I see all these changes coming on…..as much as i want to keep fighting….I am tired. I still believe this is ME….

but my body quickly reminds me..

I am no longer afraid to die, I believe wholeheartedly that I have fought as much as I possibly could. So if my time is coming, I am ready, I am tired, this life has been full of battles, battles I am proud to say I fight standing up. I am living proof that you can keep going no matter what. In 2001 my specialist said I had 7 years to live, here it is 2017. I have already beat the odds and I will continue to fight until the very end.

I still have a few things to finish, I have this book deal that I want to finish and I just became part of another project that I am super excited about. Not to mention I love being at work…..I mean who wouldn’t want to work around this shit?! And I  really miss training……#america #pewpewpew

So until God takes me I am going to continue to fight and try to enjoy what good things life does bring my way…..I pray you all do the same….XOXO

Lucky ME

Laying in the hospital the other night, I wrote this. I wrote it because I was frustrated because several times I hear from people there going to be there for me yet i call upon them to help me and they’re not there or they push me away or something and it’s really becoming a problem. I cannot stand falling into so many of these chronic disease statistics it’s driving me crazy and I’m going to keep speaking about it until things change . Just because we have a disability just because were sick just because were chronic just because were possibly terminal does not give you the right to treat us the way some of you do!! If you don’t want to take care of us do not choose to be in our lives!
Tonight I really want to touch on caregivers and the lack there of. As most of you know if you’ve read my all about me section you know that I have had people come and go and I have heard every excuse under the sun about why they couldn’t deal with my health. And if you look up statistics it’s over I believe last time I looked it was over 76% of people watch loved ones leave them while dealing with a chronic and or terminal disease. I really find this extremely shocking I guess because I’m not that type of person I wouldn’t leave someone during some crisis. I have already helped some people get through some things and not once did I think about leaving; it didn’t even cross my mind I knew that there was a light at the end of the tunnel eventually and that no one should have to go through something painful frustrating sad horrible etc. alone. But God made us all different and quite a few people that have been in my life have been the complete opposite of me as far as wanting to stay there and help me get through this health stuff. And trust me I know that this is nothing easy to go through and some days it is zero fun but I didn’t force anyone to be in my life except for family and hey I didn’t force them either just like I’m sure you didn’t force the people that are in your life that maybe have left you.

I’m going to get a little personal here because If we don’t talk to each other about real life stuff like what we deal with living with these diseases and what some of us have to go through on a regular basis then people will think its ok or worse yet doesn’t exist. And in my opinion when people come into your life by their choice they know you’re sick I think it is extremely cold hearted to push you away and or leave you. Or to take another step further like abuse you I have read a few cases where the caregiver has abused the sick person because they were tired of dealing with them. 

My biological family is just like any other biological family we all have problems not everybody gets along but I never in 1 million years thought that I would be alone fighting a disease that i can’t fight. Never in 1 million years did I think I would turn around and very little family would be standing there. I thought that blood meant everything but I was wrong. It’s hard knowing that you have family here in town and yet You find yourself alone a lot. I can’t even begin to understand how you can let your firstborn as in my case go through what I’m going through & not want to be there. I hope my children know that as long as I’m alive, no matter how sick I get I am always going to be there for them; no fight no argument is ever going to be enough to push me away. I love them unconditionally. And to be completely transparent once my family members start turning their box for one reason or another I begin to think to myself, if my blood family can’t even be there for me how can anyone else and I know that kind of sounds crazy and sad but it is what I think and I know I’m not alone in this. I have talk to some other people who are fighting a similar disease like myself and they have found themselves in a very similar situation and fortunately you kind of get in this depression funk and it’s what you think it’s kind of a form of abuse in a sense. Then I have friends who I have known since grade school and/or since high school who have been in my life and then as soon as the blood work began to get bad and the surgeries began to pileup the more people start running for the hills. I have heard so many times I can’t watch you die! Or my favorite one it’s so hard watching you go through this, i just can’t deal with it. Or you are making me sick because i have to help you so much. Huh! imagine what it’s like for me! But here’s the real kicker I can’t run I can’t run like you do I can’t push myself away I can’t tell myself excuses & push you away…..SO…lucky you. 

Lucky you that you get to escape your promises that you made, Lucky you, you get to move on with someone who isn’t sick, Lucky you, you get to keep your job and enjoy the life you dreamed of, lucky you! did you enjoy filling my head full of promises and telling me you’re never going to leave? lucky you for leaving me and pushing me away Lucky you lucky you

Do you feel lucky now,is your life so much better do you feel guilty for lying & hurting someone you said you would love forever ?lucky you lucky you. 

This is how I felt for a long time I felt like you were the lucky one but the truth is it’s lucky me lucky me whether you were family friend or a lover you never deserved me anyway. My life might be shorter than yours but I can guarantee it’ll be filled with more love than you could ever have in a lifetime so lucky me lucky me.