Tag Archives: RA

Its summer time Bitches

I hope you all are enjoying the beginning of summer!

 

I plan on answering more emails next week as this week has been a bad week, my body decided to be a pill.  I missed almost an entire week of work and I spent some time in the hospital. It was just one of those weeks when you want to “tap out.”  I was completely miserable. the dizziness, the vomiting and the all over feeling like shit does get old…..

 

BUT…..  today I was able to get back to work! It felt so good to be out of bed and be around my work family.

I do not feel as good as I felt 2 weeks ago but I definitely feel better than the past week.  My blood tests are not good and my inflammation has been high and I know that is why my body hurts so much but dammit, I really can not take anymore weeks like last week. It truly takes all I have to stay optimistic when my body keeps being an ass.

The Doctors try and help  with the pain control but sometimes nothing seems to help.  I  just have to push through it and pray for it to end. It is so frustrating, scary and really getting OLD. I want a break, a break from it all.  My inflammation numbers are very high and have been for awhile now which angers me. It angers me because the Chemo and Biologics I am taking are supposed to be helping with that and it is not. I feel like I am suffering extra due to medication side affects for NO reason. The Doctors are meeting in the next few weeks to discuss what is next for me and I am praying that it is something better than what I am currently going through.  Truth is all the ideas they have already discussed with me are no better than what I am doing now, essentially new drug name with same fucked up side affects.  I really am trying to be optimistic but I feel so burned out. Until they find a cure, I feel I am in a never ending battle that I am never going to win.

 

Nevertheless……..Now more than ever I do want to live, because FINALLY outside of my health things are GOOD. I want to see where this new path is leading.  I have been enjoying hanging with friends. Going to our favorite Bar with the group…

having BBQ’s with the Walkers…

 

But Most importantly I have been enjoying my time with the Best Boyfriend a girl could have.

 

Ryan thank  you for showing me that broken pieces can go back together. Your love and support have been such a blessing to me. What is so great about you is that you never had to say the words, “i love you,” because you have always showed me that you cared. It is so good to have someone just do things without having me to ask. The way you comfort me when my health is kicking my butt has been a nice change. I love that I can count on you to be supportive, I know you have my back. I love you for all the above reasons and so much more…………….

 

To my spoonie family, keep fighting, keep putting one foot in front of the other and NEVER give UP!!! I do not know about all of you but being sick and shown me how STRONG i can be and that I can get through whatever life throws at me!

As always thanks for all the love and support XOXO

 

 

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

 

 

Day 5

How does being chronically ill make you feel?

This is a hard one for me to answer. It is honestly an emotional question. Physically it makes me feel like i have been torn apart, put in a wood chipper, rebuilt and then continuously put on repeat.

Emotionally it is depressing and frustrating because there is nothing anyone can  do not even myself. I feel isolated and hurt by those who claim they love me. I watch as people just go about their buisness and pretend i am even in the room. Its lonely, scary, down right scary! 

I feel pain all over and when i say all over i mean all over. I internally bleed which makes my belly and kidneys hurt. My spine has some issues so my back just screams. My legs refuse to work like they should so sometimes every step feels like someone is ripping them off. My hands swell and fight me on everything i used to be able to do. Most days i have trouble gripping things. Both my ankles and wrists ache continuously. I have sores on my feet and in my mouth sometimes. I habe skin rashes that itch like bug bites. 

AND there is the fatigue!!!! I could sleep for two days straight and get up exhausted, so exhausted one would think i haven’t slept in weeks. It amazes me just how tired i am. Then som noghts its insomnia night(my favorite) its the night i get to see how many shows i can watch while others are fast asleep.  

I am sure i am missing somethings because there are so many to name but i think you kind of know how i “feel”. 

Oops almost forgot to mention how many meds i take, these also make me feel certain ways, but mostly i just feel like a medicine cabinet. Many drugs make me feel dizzy, agitated,sweaty, barfy, Not hungry and just plain ‘ol SICK! 

I hope this answers the question.

Day 4

How have your friends/family reacted to your health?

Several  people have walked away and or pushed me away, claiming it is to hard for them to either watch me die and or me being sick makes them sick. Some try to stick around but make me feel like a burden. They forget that i am in a battle every second of the day. 

But i have gained an amazing church family who loves me the way God loves me…unconditionally

Day 2

How have these illnesses affected me?

These diseases have affect many things in my life. I have gone from working to   living on disability. I am 5 classes from graduating with my Criminal Justice degree but had to walk away because i am so exhausted and in pain all the time. From being with people i love and who claimed to love me back only to watch them walk out on me due to my health and the challenges it brings. From walking like a normal adult to walking with walking devices. Relying on myself for everything to now being dependable on others. I need help bathing sometimes, i need help dressing. I live by when my meds are due. How fatigued i am or not. How much pain will today bring?  I mostly live in bed instead of enjoying the outdoors. The truth is i had to find a new way to live, with new rules, new people, new goals. It has completely changed my life

My March Madness✨

Only on day 2 of March and i already have so much to share!  

First off the biggest news is, i unfortunately was forced back onto chemo meds. Within 2 weeks off treatment My disease not only took over but it skyrocketed. I was suffering and seeing a whole new bunch of RA issues.

Although i am sad and feeling defeated, i have to do what is best for me. To be honest,  I had a rude awakening. I honestly thought i could fight this  terminal disease on my own but i was wrong. I now understand that i have to stay on chemo meds until i die, whether i like it or not. This is a very touchy subject so i appreciate your compassion and kindness during this time. 

Secondly due to this “rude awakening” i have been forced to take a long hard look at what’s important. I really realized just how sick i am.  I believe i am finally going through the  5 stages of loss & grief. I was told a while back that eventually i would go through the stages as most people diagnosed with chronic/terminal diseases do. It sounds kinda crazy but i believe i just went through denial. Not denial that i am sick but just how sick i am. 

Anyways this has been a hard week.  Extra bad blood tests, worse than when i was first diagnosed. Something I try to remind myself of is I was once told that I can either be happy about my terminal chronic illness or I could be angry at it either way I was going to be living with it. And although I know this is very true I still find myself so angry asking myself why me you know all those crazy things people ask themselves but I know there’s a purpose to all of this I know that God has a purpose for me I just get really frustrated. Sometimes I just want to scream because I’m in so much pain and I’m so tired and all I want to do is to go out with some friends and have coffee or anything really. And then I get in this place where I am angry about my health and I’m reminded about everything else I’ve had to go through because of my health so you kind of spiral you find yourself spiraling down this hole of negativity and it really sucks and no one wants to talk to you about it because they don’t know what to say and you just kind of  get stuck until you get yourself unstuck. Unfortunately a lot of people never get unstuck and that’s why suicide is so high with this illness and that angers  me too. I wish we had more help and more understanding of this disease of all diseases. I wish that doctors were more compassionate and if they listened more to us and not put us in a box like we all are the same sizes and we all fit in the same box because that’s not the case even if we have the same illness that doesn’t mean we all should be on the same treatments because we all have different bodies. And outside of doctors then there’s the emotional part of the people around you and how you’re treated. You know like your friends your family or the lack there of. Sometimes when I get in my negative downward spiral I think about all the people who have been in my life and promise to be there through all of this and who later turn their back when they thought it was too hard for them; boy I wish I could turn my back on my health. My favorite personal story that I’ll tell you is about Mr. Rossi who used to promise me he would always be by my side,  he would promise me so much that he would even pound on his chest like a gorilla and say I’m always going to be here for you I’m always going to be here for you, i guess 4 years was forever in his book. He left and ripped our family a part, like it was nothing.  And then i have blood family who pretends i dont exist. I wonder if they think by turning their backs on me, i will not be sick, or is it they just dont want the hassle or my favorite…. ” i just cant watch you be sick, its to hard.”     

Anyways i just would like people to mean what they say and do what they say they will do. If something is too hard then SAY dont make promises YOU cant keep. I am a person and i do have feelings.  Its hard to trust people with our delicate lives. And i am not going to sugarcoat it when you were sick your life becomes very hard and those around you need to be ready for all the changes too. 

Also if you are living with a chronic disease and you just need someone to talk to you about the things that I have just spoken up about please feel free to email me I’m not afraid to tell you my story nor am I afraid to tell you how to deal with it please don’t commit suicide please don’t get wrapped up in your negativity there are people like me who would love to help you get through those black negative days. I mean I’ve said it before and I’ll say it again I have negative days (i just gave one of my personal painful experiences)too, because dealing with dying and pain and discomfort and fatigued affects everything in your life and you cannot hide in your room or in your house you have to reach out to someone and I don’t even care who that person is a give me a family friend a stranger I don’t care who. Mr. Rossi rocked my world and I went through a lot of painful treatments and Tests and finally then the awful terminal diagnosis and if I wouldn’t of met who I met in California I don’t know if I would’ve made it through but I did. It’s really scary to reach out to someone but you have to do it because committing suicide is not the answer I believe we all have a purpose.

Ok so now on to the rest of March Madness FUN stuff, i get to see my favorite singer songwriter and friend , Tyrone Wells in a few weeks. I am super excited, he really has been a HUGE blessing in my life and i can’t thank him enough for the things he has done for me. We also have another knife class @ Titan Academy. I have a few photo opportunities. I am really enjoying the art of photography! It gets me out & about when my health allows it! It reminds me to live and even through all the fear of dying & pain its a beautiful life!!!

My brain is always on

Lately i lay here and all i can do is think. Sometimes i wish my brain had an off button. I think various things throughout he day. I think why cant i just accept my health and all it entails? Why cant i be around people who actually love me and want to be with me? People want to run away from me once they hear how sick i am. Sure some people want to be by my side but with that comes other issues. I already go through so much that sometimes its harder to for me to go through others baggage on top of mine. Then i stress on how everyone will go on without me. My kids, i worry about them a lot.
I just feel so empty anymore & my brain dwells on that. I watch as others go about their business and occasionally pop in on me, like its on their “to do” list and once they have checked it off their list, off they go. Or my favorite one is .. Hey kari come by if you want… But we will never come to your house… Thats my favorite! People just don’t realize how hard it is most days for me to get out of bed &/ or do things. And that is why only a few people really know what is going on with me. Until i can trust you, you will only get basic updates. I really try my hardest to let people in only to get later left behind. I am the most loving loyal person i know, yet its hard for me to find real people to have in my life.
I think about love, and how much i love people and get very little in return BUT i also believe if i don’t fully love every time i might lose the very one i belong with. So i do my best even in my bad health condition. I pray that everything will work out eventually and that i will experience the most deep love with my soul mate before i leave this earth. Im special, i am beautiful, i am funny, i am loyal when i am committed, i am smart… I am a great person and anyone is lucky to know me. We all have good and bad qualities.. My health does NOT define me!!
I get tons of emails on what i think about when i am alone. So here is a brief intro to my brain. Lol