CF Awareness Month- In Memorium

This has to be the hardest topic of them all. I have lost some cysters over the years and it so heartbreaking to lose someone to your same disease and at such a young age. I realized recently that at 33 I have outlived most of my closest cysters. At 33!! I am going to speak for all 33 year olds and say we are way too young to be outliving our friends!

When I started blogging I met a friend through my blog comments. She was about my age, worked in a school, and was married and had lung function just a little higher than mine. She found my blog because she wanted to start a family. We hit it off and became Facebook friends and stayed in touch via e-mail.

What happened over the next few years is something I will never understand and I will never live without feeling some guilt as to how life treated us so differently. I had a baby, she was having trouble conceiving. After a few years of trying she decided to try for surrogacy for multiple reasons. I was ecstatic for her because she would finally fulfill her dreams of motherhood.

Then by some weird twist of fate we both started to decline. We both started losing lung function and having problems getting a grip on CF. We slipped down together, and found comfort in clinging to hope with one another. We found comfort in having a friend that could understand how this horrendous disease can pull the carpet out from under you and you can fall at such a dizzying speed that nothing seems to ever make sense.

And then we watched our numbers fall to the 40s, 30s, 20s, both desperately trying anything to get our numbers back, both of us working our asses off to do anything and everything our doctors asked and then more. We made a bet at who would get back to 50% again and we teased one another about who would win. We talked about the upcoming medications in the pipeline and how close Orkambi was. We told one another to hang on until Orkambi become available. And then we both were going to the hospital again, but my room wasn't ready and I kept getting delayed, for days. Finally the phone rang to say a room was ready and she was the first person I told. But she didn't respond.

She would never respond again.

I still don't know why I was given a baby and she was not. She deserved one just as much as I did.

I still don't know why either of us had to decline so rapidly.

I still don't why I was given a second chance and she did not. She deserved it just as much as I did.

I still don't know why I was able to try Orkambi and she was gone before ever getting a chance.

I still cry when I think about her and how things ended up.

I still call on her for strength when my CF gets too hard because I know wherever she is, she understands.

CF Awareness Month - Videos and CFF

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One of my all time favorite CF videos can be found here

CF Awareness Month - What Is CF

I don't want to re-invent the wheel here so if you don't already know check it out..

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

CF Awareness Blog- Free Day

 

 

For free topic day I am going to give an update on my health lately. This winter has been so rough on my poor body! It started at Christmas when I got a bladder infection and soon after contracted noro-virus. Prior to that I was doing really well and staying very healthy. It seems that when I get hit by something really bad (oh you know throwing up non-stop) my immune system takes a huge hit and seems to disappear. I also lost weight because I couldn't keep food down for so many days and I think the weight loss really hit my immune system as well.

 

 

So the past several months have consisted of one cold after another, bleeding into one another so that I can hardly remember what it feels like to feel well! I was sick the whole first week of May and now I am sick again! That's less than two weeks! And we all know a CFer doesn't just get a cold and bounce back to 100% so I feel like I haven't been 100% in months now. Thankfully, my lung function has been holding steady and I don't even have words for how grateful I am for my lung stability. This winter could have been so much worse if my lungs weren't holding strong.

 

 

I am so very sick and tired of being sick and tired. I thought by May I would be over this horrific cycle of sickness, but it seems the viruses are still circulating in full force. I just want ONE month of no cold, no cough, and actually having a voice (I lose my voice every time I get a cold) and I just want to have energy again! Hurry up, summer!! With the end of the school year wrapping up (which means I will be at preschool most days now until the end of the year) and an upcoming wedding and a visit to a best friend I just can't afford to be sick anymore. I also wonder if all these activities will make me sick AGAIN! Ugh, despite taking all my vitamins and supplements and finally eating fresh fruit (boysenberries, blueberries and strawberries) from my garden I just can't get back in my healthy groove!

CF Awareness Month - Smoking

I am not sure what to say about this topic. I feel like you have a right to choose what you do with your life. We all make life choices that aren't always wise. In high school my two best friends and I would purchase a pint of Ben and Jerry's ice cream each and eat the entire thing in one sitting. Was that a smart healthy choice? Nope. Did it have long term consequences? Thankfully, no. Am I going to judge your lifestyle habits even if I personally don't agree with them? No.

What I do get mad about is when people's lifestyle choices directly harm others. Like don't smoke with children around. I also get pissed when people don't obey the "no smoking within 20 feet of a building" and smoke wherever they want. In that case, your lifestyle choice is harming other people's lives and I am not cool with that.

The other part that gets a bit murky is when we talk about transplant. I don't think anyone deserves to be sick enough to know what needing a transplant feels like. And for people who do get that sick, I feel they all deserve a set of healthy lungs to run and jump and be human again. It does get a bit weird when people who were born sick (whether CF, pulmonary hypertension, or any other lung disease) has to complete with people that are sick due to past poor life style choices for new lungs. The biased part of me feels like those of us that are simply "unlucky" should have priority, but that isn't the way life works.

CF Awareness Blog- Hygiene

I definitely don't fall into the OCD category. I am not really a germaphobe and I do lots of things other people with CF avoid due to concerns about bacteria: swim in rivers, lakes, sit in hot tubs, garden (I do wear a mask though), and volunteer at my daughter's preschool. I can't spend my life wrapped in a bubble because we all end up the same way... dead. I want to enjoy my time here.

I do keep a bottle of hand sanitizer in my purse and use it pretty regularly during cold/flu season so that might be my CF-OCD showing. I also tell people not to hang out with me when they are sick and move away from people who are clearly sick and coughing at the grocery store or library. I guess those might be weird behaviors for average people, but for the most part I don't think I am overly obsessed with avoiding germs.

CF Awareness Month Blog - Savior

I am interpreting this as a person who has been life saving rather than in a religious view (not sure what the original person meant by this so I am opening it up to my own interpretation).

Most of my entire life I kept CF a huge secret from everyone I knew. I kept it such a huge secret that I didn't even tell a few roommates. How crazy is that? I would do my treatments when they were in class or before they woke up. I seriously look back and can't figure out how I managed to pull that off! When I did have to tell roommates or coworkers, usually because I needed a PICC, I gave as few details as possible. CF was always my dirty little secret.

When I met my now husband I wanted him to know what he was getting into so I was extremely open about my CF. He was really the first person I let know all of me and my disease. As we grew closer he became the first person that took some of the burden I had from CF and helped me carry that burden. He not only was supportive in my health, was willing to do jobs very few people would (like clean my PICC site daily when I had such a nasty reaction I had hard even looking at it), he was also a huge emotional support.

The emotional and physical toll CF has on a person, especially as they decline, can be enormous and without the support of my husband I am not sure how I would get through. I am so grateful for his love and support!

CF Awareness Month - Mess Ups

The mess up that makes me the most annoyed got it's own blog post here. I found it infuriating because it was something that wouldn't have happened at all if the resident (ugh, don't get me starts on how much I dislike residents!) didn't take two seconds to double check what he was doing. Luckily, outside of some (a ton) of unnecessary stress there was no real harm done.

 

 

The other most horrifying mess up happened at one of my most recent hospital stays. Before I share this story I understand my port can be complicated. I also know I should learn to access my own because of this, but for some reason I can't get myself to that point right now. I am allergic to chloreprep so I need nurses to use betadine. The problem with betadine is that once the needle has been accessed the leftover betadine needs to be removes with alcohol or I will react to the betadine. If that wasn't bad enough I also need a very specific set up for my port coverage that I will not get into because it is complicated and boring. Anyway, the nurse in the hospital seemed a little nervous about accessing my port, but I assumed it was because I had so many port "rules."

 

 

Unfortunately, that assumption was very wrong. First, the nurse set everything up on a non-sterile surface, my dinner tray! I had to tell him to throw everything away and do it again on a sterile surface. I should have told him to get someone else, but I dumbly didn't. I then had to tell him at another point to change his gloves because he touched a non sterile item during the sterile part of the port change. Unfortunately, this is not the only time I had to ask a nurse to change gloves due to not keeping with sterile protocol. I also had a PICC nurse that I had to politely ask to change gloves for similar reasons!

 

 

The part of this that scares me the most is that most of the time I am feeling well enough in the hospital to watch my nurses. I ask a lot of questions and confirm things are done the way they are supposed to be done. My fear is if I am in the hospital and I am not in a position that I can advocate for myself I am at the mercy of the nurses. Now, 99% of nurses are amazing at their job, but one slip up with a not so great nurse can have fatal consequences.

 

CF Awareness Month - Oops moments and Fatigue

May is CF awareness month and many of the bloggers I regularly follow are doing posts dedicated to bringing more awareness. A fellow blogger, Breath. Love. Justice, has been doing the 31 Day of May blog challenge. I had participated in this a few years ago and after reading her posts I went back to check out mine. Apparently, I made it through the first ten days and then randomly did day 14 before falling off. It was interesting for me to see how much my perspective and life has changed in the past 4 years. I also felt like I wanted to join in and finish out my 31 days. I can't guarantee that I will do the last 17 days, but here is my attempt!

Ahhh, fatigue and CF! I am not sure many people can understand the exhaustion that comes with a bad respiratory infection. Bodies of CF patients are already working harder which means we already have lower energy levels. Now add a really bad infection and it is a recipe for disaster!

The absolute worse oops moment due to CF fatigue happened when Kaylee was a toddler. I was home alone with her and I was so unbelievably sick. I was on IVs, but I was so fatigued that within two hours of waking I would be so exhausted that I wondered how I would survive being awake until nap time. It felt like torture trying got keep my eyes open, let alone function as a mother. Looking back I am almost positive I was so sick I needed oxygen at night, but since I was doing home care nobody knew. I was waking up with extreme headaches and felt as if I didn't sleep at all. I assumed it was just part of being sick, but now that I know the symptoms of low O2 at night, I am sure that was a huge part of my feeling like the walking dead.

Anyway, Kaylee was playing with a puzzle (or something quiet like that) on the living room floor. All I could manage to do at the moment was lay on the couch and watch her play. The next thing I knew I as laying on the couch opening my eyes from a spontaneous nap!! I had no idea I had fallen asleep! I also didn't know how long I was asleep!! I am sure it wasn't long because Kaylee was still sitting in the same spot. I felt like I had failed at the most important job in the world, keeping an eye on my own child!

Full disclosure: There were times when I would be really sick that I would put Kaylee in her crib (that was next to our bed) with toys so I could get a quick nap and I knew she would be safe. This however was the one and only time I just fell asleep without even realizing it!

In A Matter Of Seconds

A heat wave stopped by our little part of the world and decided to settle in for a few days. We did the only thing we know to do when it gets hot here (and it can get very hot), we fled to a nearby body of water to cool down. It was Wednesday morning and the beach was almost vacant outside of a small gathering of women and another mother with three very small children that had settles some distance down the beach from us.

Kaylee and I were walking up and down the beach picking up various seashells and plunking them into her sand bucket. On occasion we would find a real treasure, a crab claw or some fishing weights, which would elicit squeals and shouts from Kaylee. As we walked along the beach, the blazing sun felt as if it were out to set our backs afire, forcing us to venture just a bit deeper into the water. The chill of the water was a harsh reminder that it is still only Spring and we would run back ashore, legs tingling from the cold!

Kaylee and I were discussing moving to another location as we had exhausted the seashells from our current spot when I heard frantic calls from the group of women next to us. It took me a second to make out the words ringing through the air, "Baby in the water!" My eyes scanned the beach to see the small children who had been playing further down the beach from us were all near the waterline. My eyes fell upon a the smallest child, who couldn't have been older than 2, face down in the water. The baby got her footing only to trip and leap forward deeper into the water. This time she was far too deep to get her footing and couldn't get back up. The other small children, barely older than their baby sister were standing watching, unable to help. I scanned for the mother, but didn't see her.

"Don't move!" I shouted to Kaylee and I took off down the beach towards the baby. My mind raced frantically as I quickly tried to calculate how long it would take me to run to the baby and get her out of the water. My damaged lungs don't allow my legs to move as fast as they would have liked and I knew deep down that it would take me far too long to reach the baby. I ran anyway, as quickly as I could. Suddenly, I saw the mother barrel into the lake and snatch her youngest child out of the water.

I stopped running, but the adrenalin coursed through my body leaving me shaking. I turned back to my own child standing on the beach looking on with wide eyes. I ran back to her and held her tight, tears pricking at my eyes. How very precious and fragile life is and how quickly it can be pulled out from under us. Hug those you love just a little bit tighter and please be so very vigilant this summer when you go swimming with loved ones no matter their age!

Kaylee Chatter Part 5

K: "Ian said a really bad word at school today?"
M: "What did he say?"
K: "I can't say it was too horrible!"
M: "Can you start to sound it out?"
K: "C-r. I just can't say it."
M: "Did he say crap?"
K: "No worse!" *Note to self do not teach your kid bad words they didn't already know*
M: "Sorry, keep sounding it out." I was super curious at this point!
K: "C-r-i-s-s C-r-o-s-s, but then he didn't say applesauce."
M: "What did he say instead of apple sauce?"
K whispering: "Criss cross booty sauce. And he was in PUBLIC! He said that in PUBLIC!"


After being at the DMV for two hour Kaylee and I still had a long ride home. I spent some of the car ride complimenting her on how patient and well behaved she was during our long and boring wait. When I was done she said,
"So basically you are telling me to go away and you don't want to be my mom anymore?"
At first I panicked thinking she completely misunderstood what I was telling her. I then looked in the rearview mirror to see her laughing. It was her first really sarcastic joke and we both had a good laugh at both her joke and the fact that I didn't realize it was a joke at first!


"When the first baby dinosaur was born who took care of it because it didn't have a mommy?"

Erin

May is CF awareness month. If you read my blog you are probably aware of CF because it is a constant theme throughout essentially every single post I put up. So instead of telling you about CF I decided to do something a little different.

I wanted to introduce you to someone who is new on the CF blog scene. Her name is Erin and she is from the blog {Chronic}Logically. She started her blog for a college course she was taking, but it never reads as a college assignment. She allows you into her life in such a personal way that you quickly grow to feel like a friend rather than a blog subscriber. Her blog includes tips for dealing with CF (I desperately need to take her advice on hydration), introduces you to other people with CF and she recently added a vlog post (something I have never gotten brave enough to do).

Check out her blog here and keep and eye out for her on the blogroll (coming soon)!