Welcome back, dear readers!
You have been missed.
Tomorrow, March 7th, I will address a nursing student class. I've done this before—last year around this time, in fact. I enjoy sharing my life story with my best friend and new roommates.
Words cannot express how excited I get when I can tell others about my life, my experience and my adventures in Cystic Fibrosis, diabetes due to CF and the most exciting of them all, Transplant. Speaking to students who know how the medical field works, what kind of complications can happen. But there is nothing a textbook will ever tell you, and that is speaking to someone who had lived it.
Granted, we all have different adventures getting to the summit of the transplant journey. CF is like DNA, unless you have an identical twin, no one mutation is the same. No one experience is the same. Many times I have mentioned to individuals who ask about my adventures, that I don't like to talk about it. I love to talk about it, but then, sometimes survivors' guilt gets the better of me, and it hurts to talk about. My journey wasn't 2 years, 3 years, 12 months or even 2. This is where it hurts. I waited 4 weeks, from the day I was listed to the day I got the call, was a little less than 4 weeks.
~ The guilt is real.
~ The hurt is real.
~ The grief is oh so real.
~ The unknown is real
I have seen others while I was in the hospital, waiting and waiting and waiting. But their calls hadn't come. So, why me? What was it about my body, my time and my resolution, did the call come from the heavens for me? My heart was filled with love, pride, faith and grief that someone had to leave this world, so I can live in it a little longer.
I have always wanted to see a psychic or medium, to see if my donor follows me around. Do they guide me into certain decisions that I make? Spices, did they love spice, cause suddenly I am in love with spice, I am fascinated with international cuisine. I know that there was a bacteria that I was growing in my lungs, that was inherited from my donor. My doctor had mentioned to me that this bacteria, CMV -Cytomegalovirus, is grown from individuals who travel a lot. This was treated with a medication called Valganciclovir: Pronunciation: val-gan-SIGH-klow-veer
When I get to talk about my CF I go into pride mode. I am proud to live my life with this special little change that no one else will ever really get to experience. Think about it, I live my life like no one is watching. I don't have to explain myself, cause I will tell you about it flat out. If you want to drop me into some kind of pity party, take it to someone who actually needs it. Cause I have proven myself as indestructible.
When speaking with nursing students, I tend to veer in the direction of, you are the vessel in which saves our lives. They administer medication, companionship and trust. They can't walk into a CF room and think they know more about this illness than we do. We live with it, you treat the symptoms of this illness. Not the same thing. We depend on you to listen to our areas of concern, and not for you to compare us to another patient you treated. We are not the same, our mutations are not the same, our symptoms are not the same and guess what, you don't know more than I do... about me!
A lot of my CF friends say that they have gotten into arguments with their nurses about their care. I did once, I had a nurse almost give me someone else's medication. I noticed it because it was a colour that I didn't receive. She argued with me, that it was mine, I told her to check the label on the IV bag and check the ID on my bracelet. She was about to disconnect my med bag, when I told her rather loudly "DO NOT HOOK THAT UP TO ME!!!" Lucky for me, the nurse supervisor heard me yelling, and I said to her "MY NAME IS NOT ROBERT!" She looked at the IV bag, and it in fact had another patient's name and room number on it. I didn't see her again.
We don't get mad, but when we do walk away. Walk far, far away.
When I look back on my speaking engagements and talking about myself and my adventures, I think of all the positive experiences I have encountered. CF does not define me, it's the sister that tries to take center stage, and you snub her. I live my life for me, to educate those coming into this world, whomay or may not have the experiences that I have had. Changes in science will only get better and better.
So to all the nurses and nursing students out there, remember, we depend on you to take care of us. Don't walk into our room and flip on the lights, and yell good morning, and wake us up to take vitals. Signs on our doors are there for a reason. In my case, if you deviated from these warnings on my door, you'll hear about it, and you will hate me. If we're up, check the vitals, if we're up but only to use the can, don't mistake that for being awake, we are not. If we are sleeping, don't wake us up, that's just insanity.
We are the easiest patients to deal with, we would change our meds ourselves, we absolutely would.
We know more than you think, and would do it ourselves, and some of us have, even port gripper replacements and flushes.
If your teacher tells you to be assertive, do it. But know who you are dealing with before walking into the room. We don't take shit from anyone, especially when it comes to our health care.
Well, I am going to hold off from here for a hot minute, I seem to have gone farther than I anticipated and covered some topics that I didn't know I needed to talk about. lol
Wish me luck tomorrow readers, and I will update you all. Thank you for being a part of my little community here, you are very important, and I am humbled that you are reading my story and my nonsense.
Thank you so much for being here, it means everything to me.
LOVE LOVE LOVE
~Moi
