Tag Archives: Rheumatoid Arthritis

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

 

 

 

 

 

 

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

 

 

 

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

What a week…

Hi!!!

Weekly Update…

This week has been awful, so bad that I do not want to go over it all. It was full of excruciating pain and a bunch of bullshit from the Dr’s.  I spent time in the hospital, a few hours at work and the rest was spent in bed.

I have NOTHING positive to say about autoimmune disease this week! However I was glad to make it to work tonight! It feels so good to be out of bed and be around others.

AND I AM SUPER EXCITED BECAUSE TOMORROW I GET TO SEE MY FRIEND TYRONE WELLS! If you have never heard of him, please look him up! He is an amazing singer/songwriter!!!

So please pray/send positive thoughts that I am able to go and see him perform.

Due to the lack of energy I have I will answer all questions in next weeks post…thank you for your understanding. If you have a question, you can either DM @openkari or email me.

 

 

 

Bitch Session and Final Thoughts….

I get so many messages in regards to trying to keep positive when your whole world is crumbling,so many chronic illness suicides lately… so lets talk about this for a minute…

First off take a breath! If you read my posts, you know that my thoughts, pain, frustration, life etc are very similar if not the same as yours. It is OK what you think, what you feel etc. You are not alone. You might look around and see no one but we are here….I get it, you want it all to STOP. Ya me too! Some days it takes all I have to make it second to second. I pray, I beg God to help me through the day, to get a break, cause I need one so desperately. The constant pain is so over powering and it never seems to end. I don’t sleep much, i don’t eat a lot, I don’t get out much, life just seems so dim. I feel like I am being held under the water, never coming up for air.

The other day i was looking through some art work and I found this amazing photo that I think speaks for itself. Some will only see the negative in this picture, but to me i see truth, i see pain, i see hope….

Just because we might think something does NOT mean we will act on it and that is what I see in this photo. Life is a constant battle, unfortunately for us, we are battling our own bodies. This life IS fucking hard! We must always be shattering the negative that slips in our mind. Truth is….. Suicide is real, depression is real especially with chronic illness. I know that the chronic illness is NOT the only ones who have depression or who commit suicide but for the purpose of this post, chronic illness folks are the group,  I am talking about. We must never give up. We all have a purpose even when we have NO idea what it is. Fighting chronic illness can be a very lonely battle because no one can see the battle but us. I find this to be hard because trying to explain to others how I feel when to them I look OK, sucks! Some people just can’t comprehend that our cells are killing us. I get it, what you can’t see is hard to believe but trust us, what you can’t see we definitely feel.   Please talk about how you feel no matter what those feelings are. Stay Strong and Reach out if you need too…..I am here and do not worry if I have already touched on a subject..lets chat, ask questions! Together we can push each other through the shit. We did not ask for this life….but I wouldn’t notice the stars in the sky with out it. This disease that is killing me has reminded me to live…..I take NOTHING for granted, not anymore.

While screaming through the pain……do not forget to Laugh, take time to look at the stars, LIVE……..Because Life is not stopping because we are suffering…..XOXO

 Thank You Belle…I really needed these extra spoons

 

P.S  I get an overwhelming amount of emails in regards to relationship issues and chronic illness, So I am going to do a BIG post on this topic. If you have questions or want to add your input please message me! It is nice to get others opinions…..Thanks 😉 Maybe we will do a LIVE conversation too!

 

Don’t Expect To See A Change, If You Don’t Make One!

Hi!! I know this post has been one of the most anticipated by many of you..HOWEVER I want to cover a few things before I tell you all the BIG news…….

Health wise my body has been in SO MUCH pain!!!!!!! 24/7 pain when you have a gosh dang-it pain pump is BULLSHIT! AARRG This whole situation has been a complete mess and I feel so out of control. I am not sleeping, I am eating during odd hours and I am just over IT.

So last week I took all these blood tests and we should have all the results in the next 48 hours but one came back the same day. This particular test showed my cell death has doubled in the last month. So as much as I want control over my health, at the very moment I need the chemo and biologic meds BUT I am not giving up on looking for alternative stuff. I am DONE watching my hair fall to the floor, I am DONE bleeding from what seems like everywhere. I am DONE with how these chemical meds make me feel.  My asshole disease DOES enough to me! My specialist says the chemo and biologic mix slows the disease progress so if I continue not to do treatment, the disease will be very progressive…..Like i said before one test is already back and the other 14 will be back within the next 48 hours. With the first test already bad, I am so afraid of what the other ones will show. I feel so selfish for stopping the meds BUT I needed the break…….It has been 5 FUCKING years of that shit. What if this is the very reason my pain has tripled? Did I do this to myself? Is my body punishing me? Please keep me in your prayers this is going to be a rough next few days. And even though i restarted the poison meds a few days ago, I might have already done some serious damage that may require some other fucked up meds…….But on a positive note, I am looked cute on test day..

. And with me, when one vein says enough is enough….they hit the other side……Share and share alike 😉

If you follow me, you know this year has been pretty rough on me, It seems like every time I turn around something else is in my way.

Truth is, I never thought my world  would turn from this  to this 

Yes I am smiling in both pictures BUT ONE has no idea of what is about to happen, ONE does not know that in a matter of weeks, she will be giving up on her Bachelors in Criminal Justice, giving up an amazing career, watch people shut the front door  and never come back, ONE will pass on some amazing opportunities,and live a life full of poison meds, disabilities and severe pain. One will be forced to trade in her energy and friends for severe fatigue and Dr’s. The other ONE is smiling because even though my hair is falling out due to meds, my organs are struggling due to disease, I AM STILL A FIGHTER.  Yes most days I want to JUMP off a cliff, BUT I have learned to live for the Good days, the days I can get out of bed, feel the disease and pain rip through my body and still Smile. 

With ALL that said I am so grateful for those of you who let me be silly, who push me past the negative……..

Some of you live far away now But keep in close touch and I love you all for that! I miss and love you guys so much! The rest of you fools get to deal with me a few times a week….SUCKERS

P.S. if you don’t see yourself above stop being so SENSITIVE………….. HA!

Sabrina girl we have to get together eventually, can you imagine the selfies? HA HA……thank you so much girl for coming into my life. I love that we share so much even the bad parts..the health stuff…..shit If we were healthy we wouldn’t even know about each other….. #shieldmaidens

Later this week, I will be sharing with you all a taste of Sabrina’s health journey..so be sure to read it under the Tab titled  Stories that inspire you…….

Take time to be silly…in the end NOTHING we own is going with us SO MAKE MEMORIES……

 

Outside of the pain, I have been to the Dr 3 times in the last week…….I think they call that dating?!

This one is for you folks who say…….”Hang in there Kari.”

Unless YOU have or ARE going through what us “spoonies” go through….please think before you speak. I know it is hard to find things to say to those of us who are struggling everyday but I personally would rather hear nothing then, “you look good today, you must feel ok,” “the pain should be better tomorrow,” ” tomorrow is a new day,” “you can do it,” and all of course my all time favorite…..”you look so good, how can you be so sick.”       I had no idea you could SEE INSIDE ME……… I am Impressed!!

 

BUT IF YOU REALLY COULD SEE INSIDE, THIS IS WHAT YOU WOULD SEE….

I know many of you mean well but this is ONE thing we all struggle with. Truth is many of us will NEVER be healthy again, this is our NEW NORMAL and it sucks, if you could just imagine having the FLU forever along with some Broken bones….then MAYBE just MAYBE you can imagine what our life is like.

Since my last post, I have received many emails in regards to being left, or being treated like crap by those who say they love you. If you remember nothing else…remember this…

Everybody has bad days, even those who do not share our health issues, so allow for those days but if it goes beyond that and into ABUSE….

I think one of the hardest things i am STILL learning is this…

Even when I am weak and in more pain than i want to explain, I still push myself to make others happy when they could careless what I do or don’t do. It is who I AM. I am the type of person who gives 100% in ANY relationship even on my worst days. This is one of the things that I will be changing, because I am wasting so much energy on people who don’t give a shit.  Sometimes through all the health stuff, I forget my worth. I  get lost in all the pain and suffering. I forget I am a person, a GOOD person. None of us are perfect BUT this doesn’t mean we HAVE to put up with shit. Our health is ENOUGH.  My goal is to make SURE my health is the only NEGATIVE thing in MY LIFE. *Side note*** for those of you going through a rough breakup/friendship..whatever, I am here to listen. You are NOT alone! TAKE care OF YOU!!!!

 

 

 

ALRIGHT ALRIGHT…….You have all been patient enough..

 

Where I am now, I am NOT growing as a person. My Doctors can no longer do anything BUT keep me comfortable. Everyday I do the same thing over and over again. This is NOT how I want to live. So We are moving. We are leaving Nevada. I need to see better/different Doctors. We are currently looking for different treatments, I really don’t have time to waste. No else advocates for me BUT ME. I do not need to get into detail but every aspect of my life is at a STANDSTILL. Everywhere I look, I am the sick girl, I will never get the opportunities that others are given. I will never be given the opportunity to advance because of my “disabilities.” Every time I get involved in something outside of my health, I hit road bump after road bump. I am DONE. I am with DONE with some people here in Reno, I am done with Doctors who just want to cut and fill my body with pills. I will no longer settle. I want to go where no one knows me. I want to be appreciated. I want to spread my wings before they are fully clipped. There is nothing in Nevada for us. You would think living here for half my life I would have some ties but I found out very quickly when I got sick, just how fake people can be and just how bad the Doctor/hospital care is.  Sure I will miss some of you who I have a special bond with but life goes on……It takes 2 keep a friendship……i will see just how many of you keep in touch….and YES i know phones work both ways….I know how to use mine, Do you?

I will keep you all posted on the move date, please do not ask where we are going, it is not important right now, we are not moving anywhere to be close to any one thing or anyone..We are doing this for US…….That is all I have to say on the subject. 

 

The other news is…a few months back 2 publishers approached me with book offers(apparently some people like what I have to say…… ha!)The choice of who to go with was easy!  I have decided to go with a publishing company that stands for FAMILY, supports our country and understands some of my struggles. I do not want to say much at the moment except that I am excited to do this and proud to be a part of this amazing journey.  This book will be time consuming, therapeutic(i am sure), But so worth it. And of course some of you can have a signed copy….. LOL

When i first began writing, i did it to get my health demons out, I had no idea how much my life, my words, my struggles would end up helping so many others like myself. I have to admit most days the future seems bleak, i can barely see the light at the end of the tunnel and I am scared and unsure where my health journey is taking me BUT it is silver linings like this that give me HOPE…and sometimes that is all we need to get us through each second of the day…..

Thank you for your continued support….Much love to all of you <3

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It is What it IS

Happy July Everyone!!!

Alright lets do this….

HEALTH UPDATES:

Tomorrow will be 3 weeks off of chemo and biologic meds and so far I am really miserable. BUT this is expected as now my autoimmune diseases are allowed to do what they want. 

 It is what it is…..

Last week my knees were very swollen and all I wanted to do was cut them off. I tried everything and when NOTHING helped, i went to see my Dr. My Dr by accident turned up my spine pain pump a little too high and it made me very sick….thankfully the next day he was able to turn it back down. All Dr’s are against my medical choices so please continue to keep my secret…LOL

I am going to DIE on my terms which may change day my day…..But I am not going down with out a fight! I will keep you all posted.

 Sometimes you just have to push through the pain…

Next week I do my first set of blood tests off of my chemo/biologic meds. I am very scared to see the results but maybe my body will surprise me….

Also starting tomorrow(Monday July 3rd) i will no longer eat anything white like starches and such(although I will have ONE cheat day a month.)This last surgery and meds  has really kicked my ass…and this excess weight gain has got to hit the road!!! So if you have any good veggie recipes toss em my way!

 

MY BITCH SESSION:

I have had a lot to deal with this past few weeks and for ME, it is best to get it off my chest…Lately I find myself mad because even though I wan my health to be the worst thing in my life, I find other life issues rearing their  ugly head where it does NOT belong..ARRG  For those that do not know me personally, I am a very A personality so I like things my way, done RIGHT the first time, very few questions asked. With that said you can imagine how I might feel when I can’t control things like my health and then other “life” issues start to arise! 

I feel so out of control when my pain will not stop, I can’t sleep and It hurts to walk. I just want to escape, so I head out to my car that needs new tires. Then i see that I need gas however my bank account says ZERO. It is then I am once again reminded of another thing my health has taken away…why did I bother to spend all that time on  my Criminal Justice degree? Why does the government put such TIGHT guidelines on people who are on disability? Like we did it to ourselves? Just last month i was kicked off the Medicaid program because I made an extra FUCKING $48 dollars. Seriously????? It is such bullshit. I feel like they want those of us on disability to just sit at home ALL THE TIME feeling sorry for ourselves waiting to die. Well that IS NOT me, I want to be OUT every day MY BODY ALLOWS ME TOO!!!

And then I am a little OCD..i think it comes with the A personality…HA! So I PUSH myself even when I SHOULD not in every aspect of my life. I spend spoons doing stuff and then I watch as people take little to NO notice of what I do. Do you know how much it takes to  just shower and dress myself most days?

Autoimmune diseases love giving us severe fatigue along with that FUN pain. Fatigue is so much more than just being tired. Imagine the last time you had the flu….and then quadruple that feeling and that is what many of us experience EVERY day. Please have compassion or at the very least respect the shit we DO when we can! We really are doing our best.

 

So not to hit on this subject again BUT i get so many emails on this TOPIC….Why do loved ones leave us?  

As i have said before I can only really talk about what I have experienced and just so you know, as long as you guys keep asking about it, i will talk about it. I am not afraid or ashamed of what others will think or do think, i could fucking care less. Does it hurt sure but that will eventually go away…and hopefully the RIGHT people will come into our lives…

This meme is so TRUE, you need to forgive yourself. And remember it is never a mistake UNLESS you didn’t learn from it. 😉

Several of you asked if i could sum up how i felt in the moment my health was used against me and how I felt as someone who was supposed to love me walked out.  To be honest he made me feel like I was not worthy of being loved by others. 

And being the A personality I am, I let this fester in my mind and heart, I ALMOST let it change the person I am. Because outside of being a very strong headed person I am so loving, I give a million % of myself, because I know first hand what It is like to be left behind so why would I want someone else to feel that way? I wouldn’t.  Like many of you, I was left over something I could not change, i couldn’t fix my health, I couldn’t fix that I was always in bed. At the time I could not find a way out of my frustration, I couldn’t just FIX my fucking health and so you left me behind. For the longest time I drove myself crazy because I could NOT for the life of me see how someone could leave someone sick because I myself would NEVER walk away from my sick loved one. But I guess LOVE means something different to everyone. Which brings me to another group of people, “family.” Even people who share our blood or family ties can be just as ruthless and hurtful. Many “spoonies” will agree that anyone who can’t “deal” with our health issues will walk when given the chance. So if BLOOD family can walk away then should we be surprised when others do too?

The important thing to remember is IT IS THEIR LOSS. I now look back and see all the things that people have missed out because they chose to leave. So many amazing memories I have made with other people because they chose to love me no matter what my health is like. They chose  NOT to say what you said to me… ” I can’t watch you die,” “your health is making me sick too,” “i love you BUT, this is just too much.”  Or my other favorite things i hear from others(ONCE a year), “we really care about you,” “thinking of you kari,”….Ya once a year I cross your mind…

Heads UP…………………………………..THIS IS NOT HOW YOU TREAT SOMEONE YOU SUPPOSEDLY YOU CARE ABOUT!!!!!!!!!!!!!!!!!! When you care about someone, you keep IN TOUCH. It really isn’t that hard….Just saying 😉 AND if you have not noticed..i treat others as they treat ME….

 

Then there are others we keep in our lives who keep us at arms length and never really truly love us, they just keep us around maybe because they don’t want to be like others and leave us behind or maybe we are just good ENOUGH until someone else comes along. They “hide” us for a lack of a better word. Meaning they seem to care when we are around but the minute we are out of sight we are out of their mind. I see this a lot. They too take us for granted. Like the sick do not deserve to be loved. Like we will never be good enough.It is hard for all involved BUT the difference is,  we can’t just UP and leave, we are stuck.Do you feel lucky that you were able to leave and not look back? Do you sleep well for treating others like they are worth nothing? Why did you get involved with someone who was sick? Did you think it would be easy or were you just settling till something better came along because that is how it felt and looked. Did you think because others had done it before, that made it ok? 

I believe it takes REAL people to stand by someones side and it takes an even bigger person to stand by someone who is battling chronic illness. This goes for family, friends and lovers. So THANK YOU to those who chose to stay and fight with us. <3

 

I encourage some or all of you who are going through  very hard personal situations to write down how you feel and share it, you can even share it here on my site. Let others know they are not alone. We might all be spoonies but we all have different experiences that set us back. Just don’t stop fighting for YOU. Always get back up. A few weeks ago I had another health issue dumped on me and I felt suffocated, shit I wanted to get up and leave me…and I sat in that negative moment for a few days and then I got the FUCK up.

KNOW that it is OK to fall on your knees and scream at the sky…throw your fit and get back up. I am so tired of hearing about suicide in our community. But at the same time I get it.  I get it. This is a huge reason why I write, in hopes that someone maybe YOU wants to give up because you are tired of the pain, the Dr appts, the meds, the fatigue, people leaving, people not understand…..I want YOU to know YOU are NOT alone.

Having a chronic illness, autoimmune disease, cancer, depression etc it sucks and it IS hard but we can be STRONG and we CAN make a difference. I believe this Wholeheartedly. WE ARE WARRIORS

I think before I end this little Rant, I would like to say a few thank You’s...

Thank you Alisha for giving me an amazing Birthday gift that Will be so GOOD for my health….Thank you for being so selfless as I know you have your own battles…

Thank You Jaime for just listening, sometimes that is all I need and thanks for not just seeing me as sick. We should have Wild Cherries cookies everyday 😉 You are awesome!

 

Thank you coworkers for giving me another reason to go to work and always having my back….I am going to miss you SUPER LEAD……

 

Thank you Belle, Cheryl, Sabrina, Ellen, Tamyra and all the other Spoonies who help keep my chin up and remind ME, that I AM NOT alone!

 

 

POSITIVE THINGS GOING ON DESPITE IT ALL:

We all know Rainbows appear when it rains…..here are my rainbow moments….

I recently became a Brand Ambassador for Wartorn Apparel. I love this company because they are Marine Corps Veteran Owned and Operated. If you get a chance, check them out @wartornapparel and use WTA-openkari for a discount.  Support America, Support our veterans!!!  Have a Happy 4th and Remember those who have and are fighting for our FREEDOM!!!!!!!!!!!

I am also working on another project, once we get further along, I will let everyone know the details…Just pray I get more energy to keep working on it.

What are you Rainbow moments? Whatever they are be PROUD of those moments, SHINE on SPOONIES! Keep pulling yourself UP, Inspire others and support each other!

XOXOXO  As always thank YOU for all the support <3

P.S. If you want to share your story, send me an email……

 

 

 

 

 

 

 

 

 

 

I BELIEVE YOU

 

Lets do a health update and then answer a few readers questions!

Health Update:

Friday the 19th I went in for my pain pump checkup and Refill. Good News all around….infection seems to be gone for the moment( they think it might come back once i restart chemo meds and biologics later this week, but all POSITIVE THOUGHTS HERE!!!) and the Dr got into my pump the first time to refill! Whoo hoo!!

I restarted my biologics that same night and Chemo i restart tomorrow MONDAY. YUCK

Just restarting the biologic doses I am on, restarted the internal bleeding. UGG I can’t wait to add in the Chemo again…..(i hope you hear the sarcasm in my voice.) HA     At least I can say they finally might have my pain(mostly) under control with the pain pump, which is great…I EARNED this scar!!!! 

BEFORE PIC                                                                                   AFTER PIC(9 weeks later)

    

People ask if it hurts still…yes it does if i move to fast or bend over to far. At night I can’t sleep on my side and sometimes it pinches. Other than that I am NO LONGER screaming which is good..RIGHT?!  The goal for me is to be in less pain with whatever time I have. So I am hopeful this pump will do its job 24/7!! I will keep you all posted! If you missed out on Pain Pump Surgery 21, read post titled, “speak the truth.”

Once i restart the chemo/biologic mix tomorrow, I will write an update on how my lovely body is reacting to the fun!

 

 

Readers questions:

  1. How do you respond to people giving their opinion on how you should treat your disease? This one is easy to answer….

 

2  I read your post on how people have treated you in the past for your illness/disease, does this ever get better? The honest truth is NO. I see it with others and personally experience it all the time. In MY opinion many people get scared when they see their loved one battling something they know they can NOT win. Because of that they sometimes push that person away  so they do not have to go through it too or they become complete jerks(to put it nice.) Truth be told, i would rather have someone push me away than treat me like crap. I have had people leave me when I need them the most, take life experiences away from me,run away because “watching” me die was to hard. But you know what, it IS their loss and it always will be. And that is what YOU need to believe because it is the TRUTH. It is ok to feel hurt but pick yourself off the ground because it is YOUR life now you are wasting on someone who wants NOTHING to do with you. 

Be THANKFUL they left when they did! You do not need people that treat others like this in YOUR life, let them be other peoples problem! 😉

3  What does your normal week look like? And are you satisfied with your life as it is right now? HMM great questions. I work mostly Sun-Tuesday for a few hours a day. The other days, i am either in bed or in my comfy chair due to my meds and disease beating my ass. Sometimes i am able to go on motorcycle rides, sometimes I am able to train(guns/personal defense) which i love to do! But mostly I spend my time sick. 

Am i satisfied with life? I would be lying  if I said Yes. Before I was diagnosed with Multiple Organ Ra, i was working on my bachelors degree in Criminal Justice and planning my future. Then my cells started attacking my organs and changed my life forever. Now I spend my time with Dr’s more than friends. I am on weekly POISON medications, I live in my bed/chair. I walk with a cane most days. I am internally bleeding, i have had 21 surgeries, i now have a permanent pain pump in my spine. Satisfied NO!!! But with that said, i am trying to accept my life now. This does NOT mean I give up, i still push myself especially at work.

 #TRUTH

My advice to someone who is just getting diagnosed with a chronic/terminal disease is this: NEVER FUCKING GIVE UP ON YOURSELF! I could have given up years ago when Dr’s had ZERO clue what was going on, When Dr’s gave me 7 years to live, when people i fucking LOVED unconditionally left me without batting an eye, when my body hurt so bad I wanted to Jump off a bridge. NEVER DID I GIVE UP

 

I will answer more questions later this week as long as the chemo/biologic mix doesn’t fuck my life this week…..

Final words……..If you are reading this, chances are my life sounds a little like yours…..don’t worry so much, you GOT this! This is OUR life now. Enjoy the good days as much as you can….

DO NOT let go of ALL your DREAMS or HOBBIES…..Find days that are good for YOU!!!!!

Enjoy time with friends WHEN YOU CAN!

Even when they act WEIRD Ha!!!

MOST OF ALL…..

 

REMINDER TO EVERYONE NOT BATTLING A DISEASE

XOXO KARI

 

 

 

 

 

 

Trying to wrap my mind around what’s REAL..

A Quick Update About Last Weeks Events

The beginning of the week I felt OK, i worked on Monday, walked a mile on Tuesday, did some grocery shopping and even made it to the HOG meeting.

My belly was hurting some and my pump had been being an ass but I thought i was really improving.

I will not say I was feeling great but I was able to do some of the things that i normally did before last months surgery.  I really felt I was finally making some progress….I should have known that it wouldn’t last long………..

Here is how my Thursday went….

I got up around 9 am, had a cup of cocoa coffee, got dressed and then headed to see the Infection Specialist. Within 10 min of talking to her, she said, you are going to be admitted today. She continued to say that due to my autoimmune disease, this pump would never fully heal. It would stay infected and eventually turn into sepsis. In that moment i felt so helpless and overwhelmed.  I asked her if I could please go home and get a hospital bag packed and make arrangements and she agreed. I left her office in tears because out of 21 gosh dang surgeries this one was the worst!!! All i could think about was i being told I had to do it AGAIN. How could I?! I am still healing from this surgery, so how can you rip me open and take it out? I could not even make it home, so i stopped half way home which was at work. Thank goodness Kim was there! She got me to calm down enough to get back into the car and drive home.

I packed a bag and waited for Brian to get his post covered so he could take me  to get admitted.  While waiting I called my main Dr who disagreed with the Infection Specialist. He said he believed it would heal eventually but told me to go ahead and go to the hospital where they could run some extra tests. Brian and I checked into my room at the Hospital around 3 pm. Once I got settled the Dr on call stopped by with a “game” plan. He had talked to both my specialists and said they were on separate sides of the issue but that he had convinced them to run some tests and then decide my fate. All i kept thinking was WHAT??!! what about what I want??????!!! Next thing I knew they were in the room poking me a million times, they took so much blood i became dizzy.

Then came the fun IV pokes…OH HOW I hate that i have shitty veins!!! I can not wait to get a port. Thank  goodness after 7 pokes they brought in a vein finder…

 This was able to show deep veins.

I wish they had started with this!

My Dr also showed up around 9pm which was nice because at this point I needed to see a familiar face. 11 pm rolled around at apparently this is a great time to do a CT scan. We then stayed up watching movies on my laptop. If you are like me and hate staying in the hospital, take a laptop and some movies or use a website like Netflix. Doing this keeps my mind busy and I seem to worry less about what is going on around me.

Friday morning I awoke to my CNA taking my damn blood pressure and the phlebotomist taking my blood. OH how i hate this shit! Let my ass sleep!!

About an hour later my Infection specialist popped her head in to tell me the news and the plan agreed to by her and my other Dr. Since the CT scan showed NO deep infection only top skin infection that they would give me MORE antibiotics and watch me for a week or so.  IF the top infection began to go deeper, the pump would have to be removed immediately. Ok great so now we have a plan?! at least for this upcoming week…?!  She said yes however she thought she would warn me about having any kind of an infection could turn to sepsis in a blink of an eye due to my serious autoimmune disease, so in her opinion it should just be removed.  UGGG Yes i get it Doctor, you want it OUT of me! And he wants to salvage it!  Got it!

With that I got up packed my shit and left the hospital.

NOW with all this said, these are MY THOUGHTS on the subject…..

Several people think i should be removing this pump. Some of you think i should stop working the few days I do and spend 7 days on bed rest instead of the 4 I already do.  Some of you want me to stop doing chemo. Some of you think i should do more chemo. Some of YOU have LOST your FUCKING minds!

This is MY body, MY life and some people have forgotten that! Until you have walked in my shoes, do NOT tell me how to BE sick. Trust me if there  was a damn manual on how to die, i would have read it a time or two. Do you think that I like doing chemo meds, biologic, pain meds every week? Do you think i chose to walk with a cane more than not? Do you think I like not being able to eat the foods i want? Do you think i like thinking about death almost every day? Did i choose to have 21 surgeries and counting?! Do you not think I am so overwhelmed by all of this?

I would never tell you how to feel about watching me be in pain, suffer and eventually die. I know no one is purposely trying to do harm but it really does. It makes me feel awful and it angers me. My time, all our time is limited, so why waste it on hurting someone even if it is accidentally. The only solution I have to this problem , is just talk to me about how you feel. I will try to listen to all you have to say but please understand I do not want to hear about the latest greatest “cure” for this and that and I don’t want to hear about how i should spend what little time I have doing this or that……. so try to keep these 2 things to a minimum.

Trust me when I say that I try with everything I have to be positive. Which is very hard as you can imagine.

 

If you want to know more about my health and how far I have come, READ here: All About ME   This is where you can read a “readers digest” version. I am currently writing a more in depth version that will be available later this summer.

Having more BAD luck than good does not keep me down, it just reminds that the Best is yet to come!

  #TRUTH

Besides I did have a few good things happen this week:

I got my compact back from Zephyr Defense. My friend Dan does amazing work!! I love the Punisher looks fantastic on it! Now both my Gun Kidz look great thanks to Dan!

 

I also was able to make it to work TODAY which was so good for me! My coworkers have a way of making life a little more worth living!

I am sure this week will have its complications but I will hit them dead on like I do every damn week! Just remember to NOT judge others!

 

I always try to follow this plan…..

And when that stops working, I always have a place to go….

 

For I know that my body is getting tired….

 

But never fear I will not just GIVE up, I will continue to crawl, scream, fight and push myself until I hear, “come to me.”

Have a good week and i will keep you all informed, no matter what the Dr’s decide…..Thanks for all of you who continuously supports me in all I do and don’t. Love you all times infiniti xoxo