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 ūüôā 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. ūüėČ 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

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 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