I hope everybody had a great last 2 weeks. For those of you that are on my Facebook you know that I spent part of last weekend working and the rest of the weekend in the hospital. That’s one of the cool things you get to deal with when you have a chronic illness; due to the medications we take, they drop our immune system very low so It is common that we get infections. For the last two days I have been in bed tossing and turning screaming and yelling because this pain is so unbelievable. It’s just been a really hard couple of days off and all I wanted to do this week was change the oil in my car and get some warmer clothes and relax.. Oh and start the new yucky medicine I’ve been avoiding… Thanks Infection, Dr says as long as your hanging out with me, the new yucky medicine is just going to have wait. HA!
I have a lot to say tonight, So grab something to drink and maybe pop some popcorn. It is going to be a night! Several readers wrote in and wanted me to write about Isolation and what I think about it and of course I have a lot to discuss on my Homefront.
Lets get started…………………………….
After talking to a few other people who are also battling my disease I realize that they were all feeling the same thing that I have been feeling…… isolated. It is so easy to be isolated when you’re sick. Many of us spend 90% of our time in beds and when you are in your bed and no one comes to visit, it can be very isolating. During some bed rest time this last week, I looked up isolation with chronic/terminal diseases and I read in one of the NCBI articles that many people after being diagnosed with their ailment/disease, report isolation from their peers, frustrated with managing their disease and dealing with the healthcare system. HOW TRUE THIS IS!!!!! I fit in all 3 of those statements. 1. I know I have talked about this a million times but PEOPLE do LEAVE US, it is a FACT. For those of you who have not experienced this, be SUPER grateful. I still find this to be one of the MAIN painful things I seem to experience more often than not. 2. And then managing our disease??? WHAT does that mean????? Sometimes I read about people who are “managing their disease with this and that, and I get so frustrated because I have NO idea what that means. For me there has been little “managing” and a lot of “DEALING with.” I do not see being UP most of the night, internally bleeding, being in more pain that I knew EXISTED, being fatigued, not being able to run, and a MILLION other issues “MANAGING.” AARGG 3. Healthcare system DO I NEED TO SAY MORE???? I think NOT. I will just be grateful for the help I do have.
Did you know, isolation can be a very dangerous thing, it can worsen our disease by making us more depressed and when you’re more depressed it brings on negativity and that negativity can really be harmful to us! *To anyone*
There is no ribbon at the end of this race…there is no first-place second-place, there’s just a race WE RUN….not one we FINISH.
………..So here we are running OUR race towards any kind of help, many of us are isolated, we are depressed or sad or frustrated AND then we get the negativity from other people because we park in handicap spots BUT Don’t look sick. Family members treat us “differently” or “poorly” and some are even abused. Dr’s treat us like a number and not a person. Friends walk away because THEY CAN’T stand to WATCH US die. I could seriously go on and on. But I think you get the point. If you happen to fall into one of the categories I just named……..This next paragraph is for YOU.
For those of you who are hurting us emotionally you are the ones tripping us up making us fall, pushing our faces in the ground hurting us. The ones making our disease worse than it is, the ones making this life a little harder to live by. Stop telling us you will be there when really you will not be. Stop saying your here through it all when half is all you give. We are tired of it, the half ass treatment you give to us. The decent thing to do is stop lying, stop pulling our strings, stop hurting us, stop PRETENDING to care. Enjoy the time you have with us or let someone else enjoy the time with us. We deserve the world just like anyone else. We don’t deserve less just because we are sick. We don’t deserve to be kicked when down. We don’t deserve to go through the hassle or the pain you put us through. We have taken THIS long enough….
I am told to get over it! Fuck you
Either join our race and all that comes with it, or get off OUR TRACK!
Ok back to the my homelife……
So things have been super crazy, i have an infection that will NOT go away. I am sure i will be back in the hospital this week. Yea ME!!! With that said, while i am dealing with my bleeding kidneys, i have to stay off some of my medicines that help(a little) my disease, which in returns means that my disease is running the show right now. It is so painful when he runs the show! And the infection is painful its self, so between the two, i am living in bed. However i was able to have my Halloween Party..love these pictures! Remember pictures are Memories!!!
Reminded me of other great Halloween memories
I also was able to work a couple hours last weekend BEFORE the hospital trip. Here is proof..
Can i just say BEST job ever….wish i wasn’t sick, i would be here everyday! I work with some awesome people. And i am super blessed Debbie took a chance on someone like ME. 😉
I am also very grateful to LeAne to who took great care of me at the hospital this night. I could not have made it through with out you. Thanks for all you do!
The rest of the week was spent mostly in bed, to be honest…crying and screaming in pain. i really wish my body would just give me a break! No one deserves this crap. If YOU have your health BE grateful. When your health is gone….everything goes with it.
On another note, one of my Furbabies is dying. Tomorrow after work, we take her to the vet. Her passing is a reminder, that even though i am fighting for each day, it can always be worse. This is the ONE thing i hate about animals….they die before we do in most cases.
This is one of the first pictures of her and I (15 years ago)
And here is Tonight’s picture, her and i sharing her last ice cream with me
My heart is shredded. I am very sad but i also know, we are all born to die. Goodbye Spaz, love you…your human Mom
This last 2 weeks have been a struggle. I also know that the struggle will continue on…but it is how i choose to Run through it…that matters……