Who is in control????

I few issues have come up today.  It is frustrating that some folks think they can think for me.
First issues,  no techs between 10pm-8am.  Last time around I learned I can consolidate my overnight care.   RN's and PCT work 4 hour shifts for vitals and such but they are on opposite shifts so during sleep hours the come in every 2 hours.   How do you get rest?
   After last night I am exhausted, and with that Crabby/ Emotional Heather, my evil twin shows up. I do not like her very much.  So I ask that my care be consolidated.   RNs can come in and do what they need as decide together.  I know they need to be sure I am still alive (vitals) and they need to draw blood for counts.   They can come in AS AGREED UPON.   Once I explained this to the medical team they understood  where ai was coming from. I was not saying NO ONE can come in.  UGH.... Listen folks.

So at 3am  I woke from a very light sleep.  I had crazy restless legs and some long bone pain.   A little oxy later and I was able to sleep.   The doc on call decided to come in at 5:30 because my platelets were a 9 and I needed a transfusion.   He even wanted to turn on the light so I could sign consent.  With all the ambient light I was able to sign with the room lights off.  All platelets need to be washed for me. about a 90- 120 minute process.  Wake me at 5:30 so I expect platelets at 7-730.   Not at this place.  Hello 9am, you could have gotten consent at 7.  UGH

This floor has an RN who is deaf, there for she has interpreters.   I have expressed that I DO not want the interpreters in my room.   These folks are my coworkers and I do not want them to see me in an awkward, uncomfortable position.   I am not asking much.  I spoke directly to the RN about this and I thought she understood.  NOPE, in walks her interpreter the 2nd time the RN comes to my room.   I sent an email to the floor nurse manager and to the interpreting serves manager.  As a patient I have rights "Privacy while in the hospital and confidentiality of all information and records regarding your care."  If my coworkers are coming in, I do not think my information is being kept confidential.  I do not want them to know what is going on unless I tell them.   I am not asking to much.  I will file a complaint if this is not resolver tomorrow and my wishes are met.  I can refuse all care form her.

My nurse today is a little snotty.  I know I have high expectations to control my care.  I will do this MY way.  I am the one who will live or die.  If that is the case I will do it how I see fit.   I would have thought they all realized this about me last year.  

I am an easy patient if they leave me be, come during the day on the discussed schedule.   I have told them If they are needed I will find them or call.   Trust me if I need something they will know.  

Am I wrong?   I do not think so, I have to do this on my terms it is the ONLY way.  
I am keeping it real and keeping the faith!

 

communication issues

One would think if a place asked for feedback changes would be made.   I know URMC is a big business, but the lack of speed and poor communication baffles me.

First, I was told the floor would call after 5pm to let me know what time to come.  Not that I was in any hurry to be admitted for 30 days, but at 7:30pm I decided to call in and see what was up.
The secretary Eunice was RUDE, What an impression she made. I finally got the floor doc on the phone and she just expected me to come after my show.  

By the way, the show Kinky Boots was amazing!!!  Great music, great message, and fun!

Finally John and I get to Strong after 8pm.  I am here for only a shot chemo started tomorrow. It tool over 2 hours to get  things done so I could get the shot.  UGH

I have my no tech sign on the door.  I hope folks remember to follow my wishes.   I know the RN will have to come in at some point for vitals and blood.  Shannon (RN) said to call her if I get up during the night to use the bathroom.   Works for me.   It is already so hard to sleep in this place, having folks come in 3-4 times a night is frustrating.  How anyone gets better in a hospital is beyond me.

So, should I count today as day 1 out of 30?

Can you say bruise?

My first time around I beat AML my way.  I asked lots of questions and challenged my medical team to give me SOUND reasons for their decisions.   This time will be NO different.
I have tickets to see Kinky Boots on Saturday 5/16  My folks were coming to see the show and have a nice weekend together.   So I asked my oncologist, what is 24 hours?  He wanted to admit  me today. Really, I have to miss this show that I REALLY want to see.  it is 24 hours.    So I am seeing the show. :)  If I were feeling crappy then maybe I could agree with Jason, but I am still feeling great.  I am in disbelief that I have to do this all again, and this crappy disease is back.   I will fight I will win.

I am going to do this my way again.
I like being a part of the decision making team.   So, lets talk I say.
Yesterday, I had a few procedures  lined up a bone marrow biopsy, picc line placement, and an echocardiogram. The RN tried so hard to get an IV line so they can administer meds to make me comfortable for these skin puncturing procedures, but my veins were rebellious.  The PICC time suggested they do it unmedicated.   Hello, they must not know me.   I am in IR because I need mild sedation.  Someone came asked about an oral med.   We had never tried it, but I was willing.   It flipped the order of the pick and bmb, but we got it done.

I was glad to be in the decision process.  

My arm is a little sore and I have a wicked bruise.  My back is sore.  I can not see back there, my guess is I am bruised.    See that bruise?

 I am doing great, feeling good.  

A new Journey is beginning

I have been away a very long time.   I am not at my goal weight, but I am here. 2014 changed my life as I know it.  March 23 (my dad's birthday, and show me love date) Was that fateful day that I was told I had Leukemia.  It was like being punched in the face.  I knew I was sick, but this was bad.
2014 ended and I was so sure I closed the door on that chapter of my life,  I think I forgot to lock the door.  I have been doing fine.  Even went to Jamaica and lived my best life every day.
   Then Yesterday happened.   I went about my day, work  work and more work.   Mind you I  LOVE my job.   I was impatiently waiting for a specific email, and it never came.   Instead I got a call from the doctor.   I pushed him off, I was going to work.   But when he called I knew. AML is back.  It is back with a vengence and my only option is do nothing and get sicker and die by the end of the summer or go for transplant.   God is good and He has provided me with a 10/10 sibling bone marrow match.  I am grateful, but I am so scared.  All of the what ifs come to mind.   And what will happen to my sister.   I love her, and I need her to save my life.  
  I am going to do this my way.  I always do.
I had to call my mom, what a difficult call.   There are so many others I have to call.  An email is not the way to do it, but it may be the fastest and easiest way.   Get information to the masses.  Get people praying.  Get my support system back in the mode of support.
   I never wanted to do this again.  I am not good at depending on others.   God has humbled me before and not the time has come that I pull up my big girl pants and beat this thing again.

It's day 1 of the rest of my life.