I don't know where to start ...

Hello, it's me, we've been together so long now that I feel like these opening sentences are beginning to sound the same.

Have I reached that point in my life where my brain shuts off? 

This is a major possibility, but I mean that in the literal sense.

IT's no secret that I am not a young girl anymore, in fact, in the CF community I am considered "Elder," so you know what that means... peri-meopause and the like.

But this post isn't about that. I am going to get a little personal on this, if you will allow me.

I had my yearly lady test done. Block your ears, men, or close your eyes; however, I do encourage you to read on. I mean, your wives are all going to go through this, and maybe with the results that I am going through.

So my test resulted in some HPV. I will have to undergo a type of test that will confirm if I have, in fact, contracted some type of HPV that could lead to other issues. Because some of the life-saving medications I take due to transplant, there is a higher chance of getting some form of... well, I don't even want to put that out there. Let's just say I am not opposed to cleaning out the system.

During this visit to my Doctor, I requested a chest x-ray and a sternum x-ray.

Chest x-ray because I had a pretty bad head cold that managed to find its way into my lungs, and I just wanted to make sure that there wasn't anything to be worried about, that there wasn't any pseudomonas or pneumonia sitting in the deep dark corners of my chest. All seemed clear, nothing to be concerned about. Praise Jesus.

However, during this head/chest cold, I did cough a lot. Deep painful coughs, being CF, the one thing we were trained to do is cough it all out. I have learned to cough to the depths of hell. No bug is taking me out that quickly. So, needless to say, this coughing may have done other damage.

Thus bringing in the request to check my Sternum. Results came in quite a bit later than I would have thought. Turns out, there was some damage. The wires that have been holding my sternum together for the past 16 years have broken, and my sternum is unattached. Maybe I am using the wrong wording here, but it's pretty simple, it is cracked, split, separated, however you want to word it.

So I have all my follow-up appointments on the same day. On Friday, I have an MRI for my head, to find out what is causing my headaches, then I have an appointment with my OBGYN, and then I have my CT scan of my lungs. Amazing what you can do when you fight for yourself.

This is something I am very good at. I will advocate for myself, my body and everything I need to keep my body and mind healthy. Try and stop me. I will advocate for my fellow CF'ers, and I have done just that, and will continue to do this until doctors realize that they don't have control over our bodies, we live in them daily, we are the ones who are repairing them and taking notes on what is happening each and every single day.

We live to fight for the next generation of CF'ers coming up the pipeline.

"CF Superhero since 1979"

We have done so much for this coming generation, only for me to realize that my generation has to do it all again. We are living in a time that no one has studied, lived longer than ever before. No one has done any studies on CF women or men after 40, post-transplant and how our medication affects our hormones as we age, and most importantly for me, but my hormones after transplant, where we cannot receive hormone replacements when we start peri-menopause.

There are so many questions that our doctors cannot answer, and they can't because this is uncharted territory. Let the poking and prodding commence. Let's study adults with CF who are unable to take gene-modulating therapies. I will keep you all posted, and we will see how all this goes as time passes.

Wish us luck as we brace for an adventure into the unknown.

I will update you on how the follow-ups go.

Be well, stay safe, stay hydrated and lift with your legs, not your back!

~A

Branding

Well, well, well...

Copyright "Off the Cough"

There you are! Yes, here you are.

Reading my thoughts.

Today is branding day

Got the logo, I like it.

Got the name, and I like it too.

The ideas are coming, the tunes are coming. --> yes, there will be some tunes... eek

Clearly not me singing, I don't think anyone wants to hear that. bahaha

It is all coming together.

Cystic Fibrosis isn't just something I was born with; it is something I am known for, something I have lived with. Kind of like the unknown twin sister, who is living in constant annoyance. We have a love-hate relationship. Basically, if she hates me, I make her love me.

It's an honour to be able to share my experience. Being one of the rare CF adults who is closer to 50 than 40. It's not scary, it's amazing. Going from telling my family, "Don't expect her to go to kindergarten." Who's laughing now?!? Me, I'm laughing now.

There are stories here, and you can read them. I am always around for the new people to come out and play.

Short and sweet post today, because I am having a hard time recalling what I was doing. Ahh, old age, I love it!!! 

LOVE LOVE LOVE

~A

What would you say?

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