The Mask

 

I absolutely LOVE this photo I found online. This explains how I feel for sure! I am not going to speak for anyone but myself, even though I know, it this how many people with terminal/chronic diseases feel. No matter what we are going through whether it is a surgery/Dr visits/chemo meds/biologic meds/ etc we get so good at wearing a mask when outside our home.  I sometimes forget I am wearing mine until some one reminds me to take it off.

I wear my mask for a few reasons…

1.  I am in so much pain, and I don’t want people to see that because I would hear more of, “i get it.” When you don’t unless of course you are also sick.

2. Every time i have shown my vulnerability someone has given me reason to run and hide. Some people have been very selfish and mean, when they could have handled things differently…….I have learned to keep to myself because in the end…it is ME, taking care of me.

3. Even though I have accepted that there is NO cure and I will have to do weekly chemo and biologics till I die, others do not understand this and harp on me that MAYBE someday they will find a cure. Look I know you are just being kind and positive but it IS NOT YOU going through this. You are not doing weekly meds that make you so fucking sick that you would rather die than do it the following week. Your hair is not falling out, your skin peeling, you on bed rest 5 days a week….etc

It is so much easier to fake a smile, push through my fatigue(not the same as being tired), force my body to do stuff i know i will pay for later and say ‘I am Fine,” when asked how I am feeling.

 

This is why I wear a MASK….Why do you wear yours?

***Disclaimer*** I am also aware that many people wear masks, not just the sick…….Just remember to take it off occasionally 😉  WE ARE NOT OUR MASKS

I will be doing a surgery Update later in the week, right now…i am just in misery…..praying this gets easier….after all the Dr’s are just trying to make me more “comfortable.” If that even exists lol

 

 

Through a patients eyes…MINE

FIRST OFF….I want everyone who does read this to read this with OPEN eyes. This is my website, my thoughts, my life. If for some reason I offend you….click the X on the top of this page….and FUCKING leave…..

 

 

March 8th at 7am I was prepped for surgery #21 and I had high hopes. Now do not get me wrong I was terrified because any surgery hurts but when you have an autoimmune disease on top of surgery…things take a LOT longer to heal and I personally experience more pain. I thought I was prepared for this Spine Pain Pump. I asked my Dr on numerous times many questions and I believed his answers. Not only that this was the first time I stayed away from “Internet”  information band wagon….normally I do mad research but sometimes research does more harm than anything. The truth is I now regret not doing the research I should have. This so FAR as been a fucking nightmare…….

First off, the Dr did not wean me off my original meds just let my body go from one to another, so withdrawals from my patch were awful. I was praying for death 6 hours later.  Can you imagine surgery pain, my autoimmune pain and withdrawal pain ALL AT ONCE????? If it was not for my night nurse who i forced to call the Dr who ended up giving me some other meds, i would have jumped from the hospital window. I was feeling alone and out of options. By Thursday Morning I  was in so much pain that the Dr had to redo my pump meds which was not fun for me because instead of the Dr bringing the required equipment, he forgot them and I had to travel to his office in Sparks. That was a ride from hell. If you have no idea what a spinal headache feels like, look it up and you will get a quick idea.

Today is March 19th and I am still struggling with pain and a spinal headache. As luck would have it, the Dr pierced my spinal fluid and left a hole causing a whole bunch of misery. I have had a migraine now for 11 days and it feels as if someone is smashing my head in. I can’t hear out of my right ear and I have an infection. Every light and sound irritates me. I started internally Bleeding this past Tuesday. and my autoimmune disease went into full affect on Wednesday. The Dr also made a mess of my skin.  See below graphic pictures.  In fact nothing the Dr told me a head of time was true. I now feel like I was just a $$$bag.  This by far has been the worst surgery EVER.  I have screamed from some surgery’s, however this screaming lasted 6 days. I have never experienced this kind of pain ever. And this week should be a whole lotta fun as i go back onto the crap chemo meds and biologic…But we will talk about chemo meds next post….so stay tuned

Now with all this said, I can now only pray that my pump does NOT become a problem. I pray once I am healed in the next few months, that this titanium pump does its intended job and not cause any issues I am now learning about. Like 1 in 20 people  with this pump will die. HUH 1 in 20..that is some scary odds. It is because some of the pumps become faulty, cook you inside out, some Dr’s miss the refilling hole and OD you, other pumps become moved/ripped out of your skin due to movement etc.  Just 8 months ago the FDA shut down the company that makes my pump….GEEZ

You can clearly see the loss of color/suffering  between before and after hospital pics

 

This is very scary, so please keep us all in your prayers and thoughts, only GOD knows what our plan is. I will do an update every month in regards to this titanium pump, you can bet on that! Good or bad I will tell you all what this is like.

Maybe for once in MY life, all this havoc will be for something GOOD~?!

I WOULD like to thank those of you who took out time to do things for myself and or my family! I know people have their own lives and their own stuff going on however I made the mistake of thinking that because we belong to certain “groups” that we would have a little support. What is the point of being part of a “family” if not to be with each other through the good and bad times? Apparently not everyone sees this how we do. I have learned lot these last 2 weeks; let’s just say my EYES are wide OPEN. Huge thanks to my RGR family! Belle, I love your strength and fight that you bring and I love my Eyore. Kim, you are a damn good cook and my family has been spoiled these last two weeks because of your compassion and love.  Thanks Scott who took a moment away from his serious situation to check on me!  It was so good to see you ;-} Thank you my BFF Rhonda for the box of goodies… The only thing better than that would’ve been you here! I love you so much!! Thank YOU Thank you I also want to thank those few of you who emailed, texted and Facebooked your well wishes! I do appreciate it!  Now that I know where I stand with people, I will definitely always be there for those that have been there for me when I can.  To others, I just want you gone…nothing more, nothing less. It is what is….. Especially to the ones who texted me months before hand saying you would be here for us and then chose not to for whatever reason….we don’t need you…but I am begging you to NEVER make promises like that again for obvious reasons. I honestly did not plan on Brian taking on the most of this surgery shit,  screaming/bathing me/Dr calling/medicine picking up/cooking etc. However I am super grateful to Brian for going above and beyond. It was hard when Brian had to go back to work and I was left on my own this past week, left alone crying/crawling down the hallway just to use the bathroom. Screaming in my sleep, praying the pain would leave.  This has been my last 11 days…..I pray tomorrow there is SOME change because I DO NOT want to continue on this path! Do you ever feel like your are giving your all to something but NOTHING is happening…this is how i feel. I just want the pain and misery to LEAVE me ALONE!!! I NEED to know if this will surgery/pain/misery has been worth it or not.

This picture sums up how I feel

 

A little note to my spoonie fam…..

Trust NO ONE but yourself, Do research no matter who tells you to stop doing it(as in my case), listen to your GUT, do what you want not what the Dr’s/family/friends want. We need to stand up for our rights, our needs, our health.  It IS our life after all. I am amazed by our continued strength and courage .In the hospital I was reminded by someone why I should keep fighting to live, and even more recently I saw another Spoonie fighting for her life and it kicked my butt into gear! So keep FIGHTING …You never know who is watching and being encouraged BY YOU 🙂 Prayers and Love Always….