Not a lot to report but good news
First morning dose of Trikafta down. I will take notes all day of everything that happens and record a blog this evening.
And so this journey begins.
Supplies came FINALLY!! I will do a full update and info blog tomorrow about how everything is done. I wanted to do my dressing change video but it’s too late and I was over my initial 24hrs!!! It will need done in 7 days. So not this last time I was on homecare but the time before when we still lived in the city and I had my final fuck this moment, I taught David (my husband) how to do it when it needed fixed! I allow him to do it for numerous reasons:
- As stated above, my experience with home nurses and their inability to properly change and place a new dressing is beyond my patience level at this point in my life. Too many horror stories or needing to redo it immediately after because they don’t listen than I care to count.
- He has been tattooing for over 25yrs. He’s blood born pathogen certified and because of that he understands the IMPORTANCE of needing things to be and remain sterile.
- I haven’t found anything this man cannot do! Having had so my picc lines, I could do it myself if it truly came down to it. So I knew explaining things step by step through the entire process he could handle it and I trust him with my life.
I now have a fresh clean dressing and I can start my meds at 11pm. Yes I am still in pain but I am managing it, sorta. See everyone tomorrow morning for a full update. 💜
I’ve educated people and spoken about what CF is many times as a kid through adulthood, and still do. This was my first official event that wasn’t mine speaking about what it’s like Living with CF 4yrs ago this week. I’m very proud of this speech.
Guess who was supposed to get this excerpt dropped last night? Raises hand Unfortunately I do not have a legitimate reason this time, only that time simply slipped away from me. It happens I’m only human, and consistency is a huge goal. The only thing I’m consistent at right now is being a mom and wife. I can’t say it’s because of laziness. I can say it’s because I am a busy working mom/wife with a chronic illness and life happens. And sometimes it’s because of spontaneous decisions to enjoy some fun with friends. I’d rather have that excuse any day of the week over laziness or a hospital stay.
Anyway, this week we are gonna talk about medication organization. I wanted to drop a small taste about why it’s important, how to become more consistent with it and I’ll be doing this blog with a video. It’s very easy for an adult CF patients meds to get in total disarray for many reasons. Especially if we are busy or not feeling good. At some point all of us have gone through a non compliance phase and when you are busy like myself it’s easy to forget something once or twice a week. Nobody and I mean nobody is 100% compliant 365 days a year. I will address this in another blog. Because of this, over time we develop a stockpile which adds to the mountain of supplies we already have. It’s important for our own sanity, the sanity of the people we live with and to keep track of our supplies to keep things as organized as possible. Right now once a month I seriously revamp my medication, go through everything and rotate based on expiration. I will show you all of this in my vlog. I will also have tips to keep it as organized as humanly possible in between. I’m finding right before refills are due is working for me.
Catch me Friday, the 23rd when we dig deeper into this topic.
This past 18 months has been one of my worst struggles for treatment compliance in a very long time. The last time I went this off the rails was many years ago when I was in full rebellion. It was 2003 and I was hospitalized for the first time in my life! Street drugs and fuck my meds was the motto. Boy did I pay dearly. It sucked to realize I had gone 21 years of my life without being in the hospital and I managed to screw that record up because I was pissed off at life. I longed for the freedom to not have to worry about medication alarms, breathing treatments and a feeding tube schedule. At that time it was 5 cans a night for 8hrs a night. I was on about 16 different pills and 4 nebulizer meds. As I have gotten older that treatment schedule has gotten more intense and I have added 7 more medications, more airway clearance techniques and my feeding tube schedule has changed to benefit me better. Our job as CF patients is to stay alive and its’s like working 3 full time jobs. It may seem easy but 23 medications, that include 5 nebulizers, airway clearance and supplemental nutrition isn’t as simple as some may think. Then you have to add in taking in as many calories as necessary to maintain/gain weight if you are pancreatic insufficient (which I am). Oh, and lets not forget doctors appointments and god forbid home IV meds or hospital stays. It’s a lot and at times overwhelming.
No one is perfect, and if you say you are compliant 100% of the time, you lie. It’s that simple. You may go through phases where you are on point and for a few months at a time. But, everyone misses something every now and then. Life happens, we run out the door on a busy morning, make plans last second and bolt without packing everything. I can think of a million reasons why someone could miss a treatment. For me, the latest reason has just been every day life as a mom, wife and a disability patient trying to work part time. In the last 18 months I have bought a home, got married, my dad had a heart attack that required open heart surgery, I have been on homecare IV meds and even though my daughter (not biological for context) has been around 3 years I jumped into full time mom mode since we moved to Westminster. My husband opened a business that I am trying to help him get off the ground and I am working part time on top of everything else. Let that sink in for a minute. Think about what your life is like if you are a working parent, then add 3 more full time jobs in the mix if you had my treatment schedule. Your head just exploded right? Yeah mine too! Balance is key in these situations and I flat out suck at it right now. I think overwhelmed would be an understatement. That is why my compliance is all out of whack. I don’t get everything in, and some times nothing at all. My feeding tube is actually the one thing I can say that I don’t miss. And even with that my weight is struggling. I promise it’s not on purpose. I am naturally high strung as you can imagine and sometimes I just go full HOT MESS EXPRESS on a busy day and forget things. I’ll jump up in the morning to get Rhiannon ready for school and realize half way through the day I forgot morning meds or forgot to eat, or something. And sometimes in the evening after dinner, all the running of errands or cheer/tumbling (oh did I forget to mention I’m a sports mom!), and settling in for the night I am just flat out exhausted. So I hook my feeds, and in a moment of just wanting to relax for 5 minutes I pass out, no meds. FACEPALM MOMENT!! It’s very easy to skip or miss something out of sheer mistake because you have 900 things to do a day on top of treatments.
This is why balance is key! The most important thing when going through any struggle is to recognize the problem. And I recognize that I have a compliance problem not only because I just know but because my lung function and weight are suffering! I have CF clinic on the 17th and I am terrified to know what my lung function numbers are going to be. I know my weight is down to 94, FML! I have not been this low in a long time. But my weight stems more from a 2017 blockage & horrible hospital stay, lack of appetite and general issues with CF than compliance because my feeds are done. But I also know that in order to gain weight my feed schedule may have to change. Which will just add another challenge to the mix. The second most important thing to do in this type of struggle is to tell your team of doctors and be 100% honest. I talked about this policy a few years ago and I cannot stress enough the importance of honesty. This is a hard lesson I have learned through my own mistakes, years of bullshitting my way through clinic and rebellion phase. They will not be able to give you a proper plan to get back on track or to get better if you do not give them all the details of your current struggle. Or, even your current symptoms for something that isn’t compliance related at all! This honesty policy goes across the board to be able to have as many years under your belt as possible fighting this disease and to ultimately win the war.
I know that we all like to think we have it all together, that we can handle it all. Lord knows I act like I’m superwoman. The truth is there may be someone who does on this planet and that’s great! Chances are they are not a mom, dad, wife, husband or chronically ill patient or a wife/mom who is chronically ill (which is me). Most of the time I pretend that I can breathe, that I’m not in severe pain and that I got it all worked out. I’ve gotten really good at hiding it, even from my husband on days where I need to get things done. But if there was ever a time that I need to get balance and to get back on track, it’s now! I am no good at any job, being a wife/parent/fur mom, or running my household if I am not as healthy as I possibly can be as a 36 year old CF patient who wasn’t supposed to see the age of 10. So as of tonight as soon as I land home from a much needed vacation and break, I’m putting myself on notice! Monday’s clinic visit will be full of stress, honesty and putting a plan in place to get me back to my full potential.
So, if you are a fellow CF’er or a chronically ill patient and you are reading this, please know I hear you and see you! In my support group and on social media it may seem like I have it together but I don’t. You are not alone in this struggle. The time to act is now to find balance again. I will be here for you however possible, for encouragement and accountability. I can share my experiences from the past and present, what has worked for me before. How I (in the words of Gary John Bishop) unfucked myself. By the way if you have not read Unfuck Yourself by Gary John Bishop please grab that book today and read it! I am almost done and it’s been a complete reset for my brain. Don’t hesitate to reach out to me. We are in this fight together!