Mid September Health Update

 

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

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

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

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

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

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

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

Lets get it together 49ers 😛

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

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

To all my spoonie family…..

Never give up! XOXO

 

 

Chronic Illness & Relationships

 

 

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XOXO

 

 

 

September Madness

 

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

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

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

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

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

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

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

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

I told my Dr……

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

but my body quickly reminds me..

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

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

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