September Madness

 

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

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

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

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

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

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

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

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

I told my Dr……

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

but my body quickly reminds me..

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

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

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

Lucky ME

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

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

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

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

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

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