Don't Stop Believing

Truer words have never been spoken.

Well my friendlies, welcome the the third post, no 4th of the new year. Today we will be talking about something near and super dear to my Heart. Can you hear my heart beat through this post, WOOHOO, it's a pounding baby!

So by now you know I am an old lady who is telling you about my life with CF. At the ripe old age of 44 plus tax.  I am determined to do what my heart is passionate about. Keeping to this blog, like I intend to do this year. Well baby, Hold on, it's going to be a ride.

When living with a chronic illness, there are three kinds of people. --> maybe more, I don't know everyone. lol

The first being the ones, who mention it so if something happens to you, well someone can tell a medic or doctor "Hey she mentioned that she has Cystic Fibrosis" odds of them remembering what it's called is likely low, and usually end up in someone saying "I think it's MS" only because they have taken the CF for an illness that sounds like this but could be that. 

These people could be ashamed of what they have, or don't want to be treated any more different than the person next to them. Fair enough, it's your choice.

Then there are those that are the scientific almost Doctor CF patients. They know to the milligram the medications they take, they tell everyone that they have Cystic Fibrosis and go into the history of CF. The patients that know right down to the dust in their medicine box. Medicine Box or boxes, they have boxes and boxes of medicines that they have ever taken. They know the medical terms for their meds, and not the Laymen terms of their drugs. They are the ones that will tell their doctors, "Hey listen Drug one isn't working right, maybe we can increase.... blah blah blah" They could be doctors themselves. 

Guess they type I am....

NEITHER! bahahaha

I am the one who doesn't deny I have CF, I love my CF honestly. I don't brag about the medication I take, in fact, I take what my doctors tell me to take. They know what works for me, and what doesn't. THAT IS THEIR JOB! They have spent countless hours in labs, clinic and classrooms to be able to figure out what the fuck is wrong with us. So I let them do their job. You could ask my burse to say, "Hey Ali, what drugs are you taking?" my response would be "...the same ones as always, nothing has changed." "Yeah but what are they and what's your dosage?"... "you tell me, you have that information on my chart."

I am not a scholar by any means, I am an athlete first and foremost. I don't have time to worry about dosages and what that drug they have me on is called. I know the important ones, you know the ones I need to literally keep me alive. Myfortic, Prograf. And these aren't even the medical terminology used for these. So, pardon me while I look at my blister pack, to see what these are actually called... Myfortic is Tacrolimus I guess, and Prograf is... you know what.... DON"T CARE! I know when to take it, how much to take, thanks to my amazing pharmacy who give me a beautiful blister pack once a month with everything I need to take in the day, and when to take it. The magic of Pharmacies! Thanks Robyn and my team at Pharmasave.

CF can be a bitch, and throw you the nastiest curve balls, or we can roll with the punches, let the docs do their job, go to the appointments that they schedule, and just trust that they won't kill you. But seriously, you can know too much. I have a great connection with my doctors and specialists, I also have a better connection with my body than they do. When it doesn't feel right, I speak up. That is what we are supposed to do. I am not a doctor, so when I call, which is not often, they take stock, and get me in almost immediately.

You can know too much about your illness, and it's like WebMD, it can swallow you whole. I like to give my mom credit for this beautiful life that I get to live. We didn't look into all the drugs available to us, we didn't research every bacteria growing in my body. FYI it's only 2, one that I have had my entire life. I don't even know how to spell it. Pseudomonas Aeronautics or something like that. Honestly, cultures are not my area of expertise.

Why know more than you need? Why worry about the "I could get this" or "Others have had that, is that something I should be looking into, so I know before it happens?" This seems stressful to me, and would likely drive me insane.

We were given this illness to educate people. We all do this in different ways, and mine is to let the doctors be doctors. Yes I can change my own gripper, I can flush a line and restart a pump. I could be a nurse, because I take immaculate notes and record their time. I used to do this when I babysat, so the parents knew what time the kids ate, how long we played outside for and what time they went to bed. I love note taking, it keeps me sane. Just like diving deep into your illness will likely do the same for some CF people. Just not me.

I will never be a Stella (Five Feet Apart) I think I feel more like a Poe! lol

If you haven't seen Five Feet Apart, or read the book. do yourself a favor, and this will show you the different kinds of CF patients. However my kind, is not depicted. Well I have written your eyes out, yet again, so how about we break here for the day, and resume some more chatter next week.

If you are reading this and have any questions, please don't hesitate to reach out.