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

 

 

 

My Thanks for This Thanksgiving

 

I just wanted to jump on here and tell you all……………………….I hope you all have a Happy Thanksgiving. I know many of us are battling something, many of us our own bodies and it is a HARD life but I want to challenge all of you to find something to be Thankful for. Sometimes we get caught up in all the negative crap and we get lost.  We forget that it doesn’t always rain. The sun does occasionally shine.

My health has been the worst this year, I have never wanted to “Knock on Heaven’s Door,” as much as I have this year. It takes everything I have some days to find something to fight for.

With that said, I am so grateful that I write and share my story because I get to hear from so many of you and see that I am not alone. I receive so many emails and DM.  I love how the “spoonie” community supports each other. But more than that, I love how I have an outlet to express what is my head. Today as I updated my site, I was quickly reminded of how much I appreciate the people in my life. So Today, I THANK ALL OF YOU……..You may think you do not do much, but truth is you do just enough(most of the time)(and hey none of us are perfect and it IS hard having me in your life :-P), BUT you give me something to fight for.  Thank YOU Brian and Zoe for being my “family.” Thank you  Ken who saved me from 24/7 Bed Rest and Introduced me to some of the most amazing people I now call my RGR family <3

And A HUGE thank you to my spoonie family, without you I would feel so alone.  So i took out my “sick days,” “hospital days” and below is days you all gave me….Thanks again…..

 

 

When you can’t look on the bright side, I will sit with you in the dark -Lewis Carroll

Jumping right in…..

MY WEEKLY UPDATE

This past week has been just awful, just when i think  things can not get worse, they do. This pain pump has become a living nightmare. I HATE it. I hate it so much some days I wish i could cut it out myself. I am still up screaming almost every other night and I am almost out of frequent flyer miles at the hospital. I can feel this dark cloud beginning to cover my entire body like a dark entity. It feels like all the “good” days are BEHIND me and only darkness is before me. I took this picture today…..you see the rainbow? The one BEHIND ME…..this explains how I feel in a picture….I am getting so far away from the blue skies and rainbows, it scares me.

****For all you optimistic folks out there….please do not judge, unless you are in my shoes, you have ZERO idea what this is like. Chronic pain, hair loss, severe fatigue, bone loss(teeth loss,) surgery after surgery, mouth sores, internal bleeding, vomiting, having to take poison meds…..YOU really HAVE no idea until you have to go through it. Oh and this new thing…it is called skin peeling off around my joints…it is really awesome…

And for those I have not told yet, my heart has now decided it wants to partake in the fun. Just in case you do not know….here is why this is a big deal..

“Most of us are aware that heart disease is the No. 1 killer of American men and women. What you may not know is that it is also a cause of premature death in more than 50 percent of people with RA.

According to New York rheumatologist Dr. Jon T. Giles, “RA patients have higher rates of heart attacks, strokes, sudden cardiac death and heart failure compared with otherwise similar people without RA.”-Maureen Donohue,

But hey, I am fighter right? I mean that is what people say to me all the time, so must be true..RIGHT?!

I always knew progression of this disease would happen but just like anything else, I always kept that in the back of my head. I mean who wants to think about their disease more than they already do?! Like my disease does not run my life as it is.

I did go to work ONE day so that was good, and I even did a little practicing for an up and coming qualification…

So that is what has been going on this week. I have a Dr appt this Friday with Dr “i just want to help you.”  Ya help me MY ass, more like I help you pay  for your fancy car and million dollar home.  Truth is he is just like everyone else, he HEAR’S me but does NOT LISTEN. I am just another guinea pig….just another paycheck…. Lets try this and this oh and this….maybe this……

 

THIS WEEK I WILL NOT BE ANSWERING QUESTIONS, ONLY BECAUSE I DO NOT FEEL WELL ENOUGH..BUT DO NOT WORRY, I WILL GET TO THEM EVENTUALLY. PLEASE REMEMBER I AM SICK TOO. THANKS

BITCH SECTION…..

The first thing I would like to Bitch about is this…..Please STOP saying to ME…..”I have a headache or a backache or WHATEVER and then say, But i do not want to complain, you know it is nothing like what you are going through.” This REALLY pisses ME OFF! NEVER DISCREDIT what you are going through!!!! Your pain, suffering, etc is REAL and it is IMPORTANT too!!! I understand why you say what you say but please STOP. There is no need to compare our health issues or our pain. Each of us have different experiences and feel things different. It is ALL important. So please do share with me. 😉

Secondly I want to talk about  family/friends. Now this is a touchy subject to some of you, so if you don’t want to read….skip this section! This is the time of year when I miss “family” the most.

Family to me is the people who you surround yourself with who love you UNCONDITIONALLY. This can be blood relatives or it can be friends who you call your family. As someone who is dealing with a chronic illness, I can kind of see why people have a hard time with being present. Now my disease does not excuse them for their ignorance but I have come to for lack of a better word, an understanding(a very little one.) People walking out of my life due to me being sick is one of the most hurtful things but it is a reality for many of us spoonies. And it is bullshit and hurtful but we CAN NOT change people, we can only educate.

With that said what the hell is the problem with the rest of YOU? Why do you let petty shit/arguments/disagreements WHATEVER, keep you a part from your “supposed” loved ones? Why are some people only important for what they can do for you? Why is hard to just contact people to say, HI?  Do you know how short life is? Do You need me to tell you? And if you know life is short then why do you continuously make others feel bad? You know the internet has made it so easy for all of us to see who people really are. We are a generation of sharing everything via online(where anyone can see)…some of us more than we should. So when you are telling someone you can’t do this or that and then you post your 5th and 6th vacation online for the world to see…it can sting, it can sting a lot. I guess my point is, just say the truth…here i will help you out with this one…..say, “hey i miss you but I would rather travel to blah blah blah.” “ya you mean the world to me but i would rather spend my time with so and so….”

And when you FINALLY tell the truth, I will make sure the person on the other end sends you this…

Because TRUTH is, you are a mean person not only do you say, “oh i miss you blah blah,” and then never make arrangements to visit, you then post all your travels to everywhere else online for others to see. Does it make you feel good pouring salt in wounds? ….oh and calling/texting when you need something or your are feeling bad…..is not cool either…..so if your call/text goes unanswered, you know why…..

Another thing That is along the same lines is this…..”Oh we would LOVE to be around for you guys during the Holidays but………………………?!”

Oh that’s OK don’t worry about us, we haven’t ever spent every gosh dang dime on traveling to family or friends for the holidays(enter sarcasm here.)

And if you are reading this and find yourself MAD….truth hurts….and maybe you think I am crazy right now………

Maybe you want to tell me to go to hell….

And hey, I wasn’t born into the greatest of family but the ones that Do give me love, I love back wholly. But even so, I am slowly dying an awful death and I for the life of me can not understand why some people, I BELIEVE should be here with me when able are NOT.

Nothing my children could say or do would keep me away. Because we are all human, we all make mistakes. No ONE is perfect. Sure we all fight and squabble but that  is what families do, but real families make it right…..and will show you in ACTIONS not in words….because words mean jack shit…i could tell you I am sorry all day…and not mean it…..but pay attention to my actions, they speak volumes!

This quote could not be more true! Maybe this is why some of my problems is due to the crappy people I allow on my path. You know the ones who say they are here but really aren’t, the ones who help out once and then disappear but love telling everyone they have helped…you know that ONE time. Or the ones dragging their feet, wasting my time trying to figure out what to do with me, or the ones who only contact me when they need something, or the ones who think it is OK to just “care” when they see me…..

FINAL THOUGHTS

I really think I am at a crossroad……with my health and with people in general. I see many changes in the upcoming year…..there are things I have to do whether others like it or not….because I am done spending what little energy I do have on what others want in life……I have wasted enough time on what others want… In case you didn’t notice…i have a voice too…..and it is time I use it in every aspect of my life……..

Sometimes I just want to visit the Mad Hatter….

But until I fall down the rabbit hole, I will just have to keep picking my ass up, keep fighting for my health, and keep advocating for myself and others. We are all masterpieces, no matter how broken. I expect you all to keep fighting, as long as MY ass still is…You should be TOO!! XOXO

 

 

 

Claustrophobic in my own mind

Sorry it has been weeks since my last post, my health has not been the greatest. Tonight I will try to give an update and answer some emails before I head off to bed. So lets gets started….

MY HEALTH UPDATE…

So my wonderful Pain Pump STILL is NOT working properly. I can not even begin to tell you all how pissed I am. About every 48-72 hours I am up screaming for 6-8 hours in extreme pain, the kind of pain that makes you want to jump off a cliff. Lately I have been so tired of going to the ER, so I just pace the halls of the house, cry and scream until I am so tired that my body just shuts down. I hate what my life has become. The pain is so bad that I pray for God to take me and end this needless suffering. I hope the Dr figures this shit out REAL soon or I will be moving in with him….I will no more about my pump later this week when I see the Dr AGAIN. By the way I finally got a picture of the asshole causing me more grief….this was taken when the Dr was doing a study “test” on it……

A few weeks ago thanks to an AWESOME up and coming Dr, I was able to try  Ketamine. The first dose was a MIRACLE, for 48 hours I had little to NO pain. I did everything during those hours, I danced around the house, I went shopping with my daughter and I ate foods that I can not have. Of course I want to try more, I want to see if this is the drug that can help me enjoy what life I have left. The problem is, insurances will NOT COVER this medicine at ALL. (enter sad face here.) There is a Ketamine clinic here in Reno and I spoke last week to the Dr running the place. He said the trial is 8 infusions for $3000. I do not have this kind of money but I really want to do this trial. I have set up a “youcaring” account, CLICK  here .   All I am asking from everyone is to donate a $1.  All monies will go directly to the trial. Please Share with friends and family. I just want to the chance to see if it will work. Anything that can help my suffering is a good thing. To learn more about Ketamine and or the local clinic click here.

I am still doing the higher doses of chemo/biologic mix but honestly have seen not much change. I know I have said this before but I am tired….So tired of fighting my OWN body and getting nowhere.

And even though my body is torturing my ass…I was still able to dress up for Halloween and hang out with a friends for a few hours anyways……

 

YOUR QUESTIONS ANSWERED…

  1. I am having a hard time with negative thoughts and I do not know who to talk to or where to go.   I completely understand. First off I am grateful that you have reached out and asked for help, many people don’t. There are many online resources such as:  The chronic pain Anonymous, The American Chronic Pain association and of course the   SUICIDE LIFELINE
    Call 800-273-8255
    Text 273TALK to 839863

I also find that reaching out and making friends who have the same or similar struggles helps. I do not know what I would do without the “spoonie” friends that I have made. It is good to know that you are not alone. That what you are going through is NOT in your head. Your pain is REAL, your symptoms are REAL. Also for me, writing helps A LOT!!! Hang in there and keep reaching out…your hand will not go UN NOTICED!!!

2. Do you ever feel like your health takes away from really living and enjoying the regular things that others who are not sick get to do?

The answer of course is YES. My health has changed my life in many ways. I have gone through a miserable divorce after being with someone for many years. I have been pushed aside after being told I was everything. I have watched as others celebrated special milestones. I still sit and wait for my fairy tale that i dreamed of as a child. Sometimes I just sit and watch others living a life I could only dream of. True we all have problems the sick and not sick but I would give so much to just be “normal” have”regular problems.” To have someone love me so much that they want me by their side forever instead of just keeping me on their bedside table like I am lamp that can be replaced at any time. To really believe in people again, to have unconditional love once again. To have friends I could really trust and lean on..but most people just give me enough of them so that they can say they “did” something for me.  Like I am a charity case….

I would love to be able to train more at the Gun range. I love being able to protect myself and others if need be.

I would love to be able to travel again, i miss this a lot. I miss riding my Harley. I just miss being ME….I look in the mirror and do not recognize myself anymore.

So YES our health takes a lot from us! But one thing my health GAVE ME is that Life IS short and that you must live every second like it is your last. I took a lot for granted when I was younger and my health was better. I definitely STOP more and smell the flowers….and I am really trying to Stop Wishing things were different because…..

So hang in there…and try to find new things that you can do.. A few things I am trying to do is advocating for my disease,helping others push through their bad days with me and I am trying this new thing called…letting new people in my life and praying they don’t let go of my hand when I reach out for theirs….I will be sure to let you know how that one goes……

.

I PROMISE TO GET TO MORE QUESTIONS LATER THIS MONTH….

 

 

BITCH SECTION……

I just have a few things to bitch about this week….SHOCKING i know 😉

THIS has got to be one of my favorite quotes. If you have been reading my posts since day one, you know why I love this! Sometimes people suck and they do awful things. I know I talk about this a lot but i get so many messages on this topic and I hear and feel all of your pain…trust me. If you haven’t read the “all about me” page, please do so….

Just know that you are not alone. I know what it is like to be tossed away like nothing. To be told that you are too sick to be with. Pushed aside when all you want is someone to hold your hand through it.

I UNDERSTAND your pain, and I am available any time to talk to you about it. I will not push you aside or dismiss your feelings. And I will keep talking about it in posts…because people need to understand what we go through.

Secondly..I just want to say this…..Just because you are feeling guilty, please do not tell me you care about me JUST to make yourself feel better………AND then go back to ignoring me or pretending I am not sick.

And finally to those who DM or email me nasty stuff because they are anti gun…..

 

There is zero point on arguing with peeps like you. Bye Felicia

 

FINAL THOUGHTS…

Even though this year has been the worst as far as pain and disease progression….I am still glad that I am alive. I know a lot is going on in the World today…PEOPLE killing PEOPLE and all that nonsense and it just breaks my heart because Life is SO short and it sucks that we have to spend it fighting with each other. Prayers to everyone mourning someone tonight…..

 

Dedication goes out to my other soulmate….Jigsaw….thank you for always being there and making me feel unconditional love…..

….See you and your brother at Rainbow Bridge….Mommy loves you……

 

 

Suffering in Silence

Have you ever felt that you have nowhere to go, nowhere to hide, nowhere to run, nowhere to escape…like the whole word is turning in on you? Chronic illness often makes us feel like we have nothing left and that no one is listening to our cries. For me it feels like what the fuck else could happen to me? I have already given up on almost every dream I could ever have. I have had to walk away from my Bachelors in Criminal Justice, I have had to walk away from dream jobs, awesome opportunities and if that wasn’t enough, I have watched people push me away, “because i was too sick.” But if you follow my posts, you already know that……you know most of my tragic story…and while some of you have no idea just how bad as is, most of you know all to well….because you live a tragic life too…..

Sure not all of it is bad, in fact I personally believe the sick Live more on the good days than any “healthy” person does, only because the sick learn real quick that time is not on our side and that every “good” moment must be cherished. I hope that if you are lucky enough to have your health, that you LIVE every moment. Take nothing for granted, because it can all be gone in a blink of an eye.

These past few months my diseases have been the BOSS. I have had very little control, everything that could go wrong has been going wrong. It has taken everything I have to keep going, to keep picking myself up, to keep giving myself reasons to live and fight for one…just ONE more day……

Everyday blends into the next and  sometimes I can’t tell my left foot from my right. I just want to throw in the towel, I pray for God to take me, to end this pain. People ask me if I could just have one wish what would it be….I want to go Home, I want to be with the one person who always loved me unconditionally, i want to be with my grandpa….

I have suffered enough, I am so tired…..The Doctor appts, the meds, the pain….oh the PAIN. It is all so exhausting…..the wearing of 2 masks(the one around others and the one at home.)

 

Just like some of you who may be reading this, I too am so TIRED, SO DONE with everything illness brings our way. And even though it has made me take nothing for granted and try to live every second to the fullest,  I fucking hate the way it rules over my life even when i fight for it to take a back seat.

Nothing ever goes as planned when you are sick. I can never make plans, shit I don’t even know what days I will be able to work each week until the day of. My body is the Boss. My body tells me what i can and can’t do. This makes life so hard! Bills do not pay themselves, my Doctors do not do house calls, friends get tired of asking if I can come out and play……Life for ME just stops because my body says so….. while all of you keep living……I can barely remember working 40 hours a week, riding a bike, hiking, running, bar hopping, LIVING…….Sure I am good at faking it, i can fake a smile, I can fake it through pain levels 2-7 especially at work……but 8-1 million I just want to die, not because I want to but because it is the only way I know that will make the pain STOP.

I so desperately want my back and legs to sleep, I want to stop all the meds that make me internally bleed, puke, feel dizzy, feel depressed. I just want the world to be quiet for a minute. I want to feel normal however I have forgotten what “normal” feels like.

Every year just seems to get worse and worse. I know my main disease is progressive but does it have to be so fast? Why can’t I get a break?

Why any of us? I am told that people learn from those who suffer?! That if some of us didn’t suffer than no one would know what compassion was?! What the fuck does that mean? Compassion huh?! Then where the fuck is my family? Where have all the people gone? Why is my door a revolving one? Why have people retracted when compassion is supposedly one of the reasons I am suffering? Do you know what it is like for people who say they LOVE you to leave because you are sick? SOMETHING YOU CAN NOT CHANGE????? Tell me where is this compassion you speak of?

“I can’t watch you die,”” I don’t want to be a widow,” “this is just so hard to watch you be so sick,” “but i love you,” “we can’t be friends anymore, this is just too hard,” “I want to be there with you  but…..(enter bullshit here),” Your sickness, Is making me sick too,” “we can’t do anything because of your health,” “if you just try this (enter crap health shit here),” I wish I could be there for you because i love you so much………..

I have heard it all like many of you other spoonies. It is so easy for people to just give you an excuse for their absence but for US we can never leave, it is a never ending battle.  So all the cutie pie sayings like the “compassion” one I call BULLSHIT. I also call BULLSHIT on people who say they are FAMILY or FRIENDS but are RARELY or NEVER available to help in the darkness but want to celebrate you in the light. #fuckyou

So if I haven’t told my spoonie family in awhile THANK YOU for carrying those buckets of water for me lately…I am sorry….thank you thank you thank you….thank you Sabrina, you remind me to never give up and keep hope that God has this! Thank you Kathleen for reminding me to smile and that it does not matter what time it is, you are there. Thank you Beth for helping out a fellow spoonie! You understand the struggle and I am very appreciative 😉 Thank you other spoonies who would rather not be named or keep a low profile…..I see you and I am grateful……I know I am not alone……..

I just wish there was something I could do for myself, I think this has been the hardest thing to get through my thick skull….I can’t cure my body……

I can only keep picking myself up and praying God hears me….

Until then this is MY life…

and days like this….

will be my “SPACE”

 

May I have…. and continue to be the QUEEN I know I am..

I think through it all we just need to remember that we all have a purpose…..and that even broken….We ALL are worth having……XOXO

Too close to Home

This post is going to be a little different as I want to touch on the events of October 1st.

I do not want to go into it to much as I feel we all could use a break from this horrific event however, this event has weighed heavy  on my heart and it helps when I am able to express things like this via words. A few friends of mine were at Route 91 Harvest and witnessed the horror we now call October 1st. I am so blessed that they are now at home and safe! You never realize how important someone is to you until you almost lose them. Sometimes I get so caught up in my health shit that I don’t think that anything else bad could ever happen to me. This was a big reminder that shit can always get worse. Alisha and Derek I am so grateful for our friendship. Love you guys 🙂  Take NOTHING for granted!

On to my health update…

I am so tired of people asking How I do it…..Does this answer the question?

All I really want to say is……

I can not believe how much pain I have been in lately. I am tired of Epson salt baths, hospitals, pain meds, heating pads, screaming, kicking and begging God to take me now.

My pain has been the reason why I have not written in a while. I barely make it to work. And when I do go to work, my body kicks my ass afterwards. I am so done dealing with this shit. It is so lonely. No one gets it unless they have the disease. I have been looking for a way to explain how i feel and this picture below kind of explains it…..

My body never lets me out of the jar. 🙁

Then I go to the Dr’s and no one seems to give a shit that I am internally bleeding and in more pain than I thought was possible. 

Sure my pain specialist has turned my pump up but it has not helped at all. I keep telling him that this medicine in my spine is NOT working but it goes in one ear and out the other. And my disease specialist just says…..”lets up your chemo drug dose.” OH OK ya that sounds great…..I really wish I could touch them both and they could feel a moment of my pain and frustration. It is really hard to go through all this and mentally keep positive. The doctors wonder why suicide is high with chronic illness/pain……GEE I wonder?????!!!  Speaking of suicide, next month I will be doing a post all about suicide/mental health/where you can get help and where you will not get any help, chronic illness and suicide and a whole lot more.

 !!!!!!

 

I promise to get to questions that some of you have asked next week, this week I am still in so much pain and it is taking all I have to write this much. I just pray we all make it another second, another minute, another hour, another day.

Remember……

AND just in case you need  a meme to those you wish would shut up and stop telling you  what they would do if they were sick like eating this or that….

 

Until next week……….Hang in there spoonies…….Much love

Mid September Health Update

 

Just like last month, I have been busy entertaining local hospital Dr and nurses  

Apparently my disease hates me or it just really likes the attention it gets at the hospital. Either way it is really beginning to wear on me. I hate going to the hospital and explaining over and over what is going on, I hate all the meds they add to my already shit list, I hate being in so much pain…..I just hate it all and more importantly I can feel the depression seeping in each time I have to go in. It all can be so damn exhausting mentally and physically.

My pain specialist however removed one of the drugs from my pain pump that has been causing me issues, so I am praying that in a few weeks some of the negative side affects will be diminished. In a previous post I went over my pain pump surgery, but have never really shown how they refill, so here are some refill pictures.

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And to be completely honest, I still do not know if I like it or not. It has been 6 months since surgery and I am still on the fence. I know it has helped many people but I also know that it is not a fix for everyone. I am praying that with a few changes, it will finally work for me…..so please keep me in your prayers. My other specialist raised the chemo dose again and told me that we can revisit a change of meds in 8-12 months…..This made me very angry…..It is times like this that i wish that I could touch people and give them my pain and misery for ONE DAMN DAY. She can say what she wants and then she gets to go home and live her life…

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I know that I am not alone in how I feel and somehow, sometimes this comforts me. This is why I choose to share my health journey with others because I hope that someone may find comfort in my words. I truly believe this….

This week I did my higher dose of chemo in style….

Unfortunately at the same time, i watched my 49ers lose to the Rams….UGG  Double CRAP NIGHT!!

Lets get it together 49ers 😛

I have not had time to check for “questions” you all want answered but I will get to them hopefully next post. I am to tired to go on a “bitching rant,” so no “bitch” section this week either. I know you will all miss that section 😉

So here are my final thoughts….This week has been extremely rough on me, actually the last 6 weeks but I still am IN the fight. Just because I talk about depression or frustration with my illness does not mean I am done fighting. Do I think I am on the tail end of fighting…YES….and I am OK with that. I can feel my body getting weaker and I feel that my fight is almost over however I will fight till the very end! I will Live to the best of my ability each day God gives me. I am going to keep standing up when my body says Fuck you, I am going to keep working until I can’t stand anymore, I am going to keep doing things, I want to do even when others think I can’t, because I am too sick………****Side note**** to those of you who think you are going to keep getting in my way…..YOU better move…I am not letting my disease DEFINE who I am….You might see me weak because I am sick….I see me strong(most of the time) because ALL my cells in my body are trying to KILL me and I am still HERE……

To all my spoonie family…..

Never give up! XOXO

 

 

Chronic Illness & Relationships

 

 

As promised this post will be about Relationship & Chronic Illness.

This topic is brought up more often than not. I get over 20 emails a month in regards to relationships whether it be romantic or just friendships. Health Central Website states that Disabled women have the highest rate of being victims of personal violence of any group in society today and they are twice as likely to be victims of Domestic Violence. Before we get started, I want to share this quote that I borrowed from Heart Sisters, “Bottom line: this guy is killing you on the installment plan.“Save yourself. “Get out now while you still have the strength to leave.”

 

Before I get to everyone’s questions I feel it is only fair to share my own stories in regards to this topic…………..If you have been following my posts since the beginning then you have an idea on what I have been through with friendship/relationships. This topic is not only personal but a very touchy subject for me but I want others to know that they are not alone and that their experiences are more common than not.

My experiences with relationships since I have been sick have been all over the spectrum. People have pushed me away, left me , blamed my health for everything, treated me like trash, while others have been supportive, some have even been extremely smothering. The worst in my opinion out of all of these are the ones who say they will be by my side through it all, then suddenly leave.

They make all these promises and plans and just when you think you are going to be taken care, they rip your world to pieces. Not only are you left to pick your already broken body up from the ground but you are left with time that you can never get back. They tell you, “I love you but you are too sick,” “you are making me sick, “I can’t watch you die,” “this is to much for me etc.”This made me feel like an almost finished puzzle that a bully knocks off the table. The puzzle pieces fly in all directions, some are found, others vacuumed up, some are  eaten by the dog and some never found. I had already been through a similar long term relationship years earlier and to feel the complete devastation once more was almost more than I could bare. I felt like I was drowning in yesterdays horrors. I am truly amazed at how selfish and mean people can be.  I look back now and realize just how strong I really am, because I am still here and so are they…*wink

I have learned a lot through the years.  I only open to up certain people now and I certainly keep people at bay. Being sick is so hard and it takes up most of my energy, so i try to keep negative energy at a minimum. I have little energy to spare. This is why people always on their electronics while wanting to “spend” time with me DRIVES ME FUCKING CRAZY……Put that shit away or I will choose to be around others who actually want to spend time with me. I also do not like when people I have not talked to in weeks come up to me, hug me and then say, “i have been thinking about you,” OR “I have been really worried about you, how are you?” REALLY????? My phone hasn’t rang, nothing is in my mailbox, no one stopped by…….. Listen I know we all have a life to live and we all get busy but do NOT say things just to say things!!!!!!!!  I would rather you say nothing than bullshit me.  I may not ever see age 50, 60 etc so I want to LIVE while I can! I want to live it with people who want to live it with me. People who want to spend their energy on me when they can. Why should I waste my time with you, if you spend little to no time with me? Last time I checked it is a two way road…is it not?!

I am a Gemini-Cancer so I wear my heart on my sleeve for the most part, I will do almost anything for anyone. And even though I am an A personality, I have allowed some people to walk all over me and continuously stab me in the back….because I was praying that someday they would love me the way I love them. All of us have our flaws and trust me this is something I am currently trying to change, because time stops for NO ONE. I know I can’t change anyone, i can’t make so called friends/family be there for me like they say they will,I can’t force someone to love me the way I love them,  I can’t make others  want what I want, I can’t make a cure appear, all I can do is live to the fullest everyday my body gives me.

I know many of you who write and  tell me about your similar relationship experiences and you feel ashamed or not worthy of being loved. Truth is they are the ones that are not worthy of YOU being in their lives. Do you know how people look up to you for getting up everyday battling something you are not winning? Do you know how strong you are? God does have a plan for you! I know its hard, but you are not alone and believe me when I say, the right person will come into your life and when they do, all the pieces will perfectly fit.

**** Please remember there are 2 sides to every story and the truth will always be somewhere in the middle**** HOWEVER that does NOT take away from either parties feelings or the way THEY experienced the situation…..and it NEVER excuses any type of abuse PERIOD!!!

1. Do we have to be alone because we are sick? 

No we do not! But that does not mean that we need to be in an verbal or physical abusive situation. In my opinion if you are fresh out of a relationship, take time for you. You can do this, You do not need a mate to survive. Yes it may be hard but you can do it, many are doing it right now. Believe in yourself and reach out to other spoonies when you are feeling alone. We are here for you.

2. I am really tired of the lack of compassion. I am tired of feeling like it is just me. What I am I doing wrong?

You are doing nothing wrong. Some people are  not made(for lack of a better word) that way. I think sometimes we do not notice this character flaw(my opinion) until we need it. Chronic Illness brings out the ugly in all of us. We are miserable and in pain all the time and then our partners feel absolutely helpless and instead of explaining how they feel, they take their emotions out on us. I recommend having a sit down and see if it is something you can work together on. Communication is VERY important.

3. If people have trouble loving us now, how can we expect them to love us as it progresses?

This is a hard question to answer, however I would say, if you are asking this question about the person/people you are with/around, then they may  not be the right ones to surround yourself with. However I believe sometimes we are with the right person/people and this question can come into play and when it does, I would just sit down and have a conversation about it. Really listen to what the other person is saying. People retract when they don’t know how to help you…Remember NOTHING is perfect. We all stumble….it is is how we pick ourselves up out of the fall that matters.

4. Do we have time to keep forgiving others, should we just settle with the ones who are around us?

I really feel that this is an individual choice. You spend your time on what means the most to you. But I will say this…..If you decide to forgive it is a choice! You have to make it possible for them to fix it. If we set up a pattern that makes them feel hopeless the relationship can’t work because they can’t be forever trying to get back that trust. If you find yourself “repeating” the same old shit, after forgiving and deciding together to move on, it is time to leave. Take it from me, losing yourself in someone else while battling chronic/terminal illness is a losing battle. Sometimes loving someone new is better than repeating the painful past. At the same time the grass is greener where you water it…….The choice is yours.

So forgive and move on or just move on……either way do what is best for YOU, at the end of the day you have to be able to look yourself in the mirror. Do not forget to forgive yourself too. Whipping your own back will not make you stronger, it’ll only distract you.#thestrain 🙂

XOXO

 

 

 

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

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