I am NOT ok,

Happy May everyone!!

I hope that wherever you are, you are enjoying the weather. We have had snow, rain and sun all in the last week….CRAZY

Since April 7th, last post, i have been busy. If i have not been at work, i have been either in bed, at Dr. appts or in  the hospital. These diseases are really kicking my  butt. This year has been rough on me, i am definitely worse than a year ago.  and it is very frustrating. I have bruises from head to toe and every extremity hurts like a BITCH. Life is so grand. NOT


Last week i had the privilege of visiting my favorite place, the hospital.  I had a great nurse and Dr however which made the visit a little better. In fact the Dr is the one who after 5 IV sticks, decided he would give me an EJ himself. My belly was supper swollen and this has been a long month of internal bleeding. ;-( Below is a picture of the EJ, a coming home pic and then love from the fur baby who knew i was in pain. IMG_8482

I was very disappointed that I was only able to get out once last month to walk. however we did have fun with  the dogs. Sometimes getting out helps, but PAIN, bleeding and fatigue doesn’t always let ME out.


Work has been the same, its all about PEW PEW PEW #MERICA #2ndAmendment


Its great to have a job you love, people who understand that when your sick, your sick. I love the team i work with, they really try to push me through the day especially when i am having a bad day.

I have been having MANY bad days lately, my health is  really  taking a toll on me. I find that i am no longer doing anything that makes me happy. The pain and fatigue are taking over and making me extremely miserable and i just can’t seem to see through all of it. I know as someone fighting chronic/terminal diseases,this is just “part” of the process, but i am DONE. I am done with so many things and i wonder why i am still here. Why me? why does God keep me here and take others? Does he not see all the suffering i am going through? I HATE my body and what it does to me, it takes ALL i have to go to work, or to a planned event and smile and pretend that i am OK.

TRUTH is i am NOT ok. I just want to RUN, i want to RUN away and leave all this pain behind. I want to move on to a new life, where sickness does not exist. I am so tired. I have given up so much, i just want to scream. I have said, HERE diseases, take my hair, take my job, take my life, take my happiness, take my time, take my health, take my memories, take my LIFE. I am tired. I have very little fight anymore. I am on my knees begging you to just STOP and finish me off. FINISH what you have already started. I AM DONE. I surrender to YOU because i can’t feel anything else but PAIN, FEAR, LOSS and ANGER. YOU have taken it all. I AM DONE. I can’t pretend any longer that you have not destroyed my life. I hate you, do you hear ME, i HATE YOU.

I am so tired of reading peoples blogs saying, LOVE the NEW you, the sick you. ARE you kidding? How do i love my spine who ALWAYS is ripping and tearing at the muscles around it. How do i love my legs who keep me buckling, swelling and aching. How do i love my hands and feet that feel like they are inside a fire pit all day? I have EXTREME Pain, most nights i scream for hours, yes HOURS.  HOW the fuck do i love this shit? Please tell me. And don’t you dare say i just have to be more optimistic, eat more fruits or whatever craze is on the internet for autoimmune diseases. I am DONE. Just ask my body.

So when you are whining about something that has really NO bearing on YOUR life, think about someone like myself who is struggling every gosh SECOND. I would LOVE if the worst thing in my life was, how i was left out on something, or a bill didn’t get paid or your lonely etc….GET over YOURSELF. The world is so much more than that. I WOULD LOVE TO LIVE A NORMAL LIFE. I would give up everything, all my belongings..everything if it meant i could jump, run, travel, work, stay out all night, eat real food etc…PLEASE be loving to everyone around you, it IS true that we never know what they may be dealing with. People like myself who have what they call, “invisible diseases” experience extreme pain, fatigue, weakness and a million other things. We have to get good at pretending to be OK. We aren’t Ok…….


MAY is Lupus awareness month, take time to LEARN about IT. Many of us Spoonies are LUPUS sufferers!