Lungs Misbehaving

This month has gotten away from me! I am in shock Christmas has come and gone!! This Christmas Eve and Christmas has been one of my very favorite of all time. Having a 5 year old sure makes the holiday season magical! Unfortunately, outside of the holidays things have not been going as magically as I would like.

The past few months I was struggling with colds and allergies (who gets allergies this time of year, seriously?) and despite two rounds of antibiotics I had a really really horrible clinic appointment. Like, rock bottom low. I was heartbroken and utterly shocked. I didn't feel good, but I didn't feel nearly as bad as I did a few years ago with those same numbers. And to make matters worse my last clinic appointment was one of my highest in years...38%. To go from my very best numbers to my very worse in 3 months is heartbreaking. And all that changed was that I got two colds! I wasn't skipping treatments, I wasn't missing medicine, I hadn't given up exercise. So like all things related to my CF it was baffling.

At clinic they took my cultures, ordered a CT and decided to investigate what the heck was going on. What was interesting was my weight was stable, my O2 was fine and other than my horrible pfts I seemed okay. I checked online every single day to check my cultures hoping we would have an answer to my horrible numbers and also hoping the cause wasn't a horrible bug. When my results were posted it stated I had normal flora!!! Wait, what?! That thick greenish yellow sample was normal? I don't think so, but apparently they didn't grow anything interesting and it left us with little info on the next step.

Luckily, my CT was a touch more informative than the sputum sample. Although, again, I was a bit perplexed. The cause of my horrible numbers was plugging! Again?! This happened two years ago, but everything seemed to clear up with Orkambi (among other things). My doctor thinks my asthma is playing a huge part (showed up on my CT) so I started Prednisone in hopes of opening the airways and getting rid of some of the plugs. And to make matters a little more complex just as I am finishing up with prednisone I caught a virus and have been running fevers the past 12 hours and am worried whatever progress I made while using prednisone may be lost due to this nasty virus.

This was not exactly how I pictured ending 2017, but with CF things often do not go according to plan!

Night Cough Survival

Night cough and CF go hand in hand! I don't know about you, but sometimes my night cough pushes me to the brink of sanity. The thunderous cough that keeps me awake all night, despite my body aching to sleep, always ensures the next day that I will feel like a zombie as I try to make it through the day. There are very few things that can be as aggravating as a cough that just. won't. let. you. sleep. Am I right?

For me, the dreaded night cough can be the cause of so many different CF issues: post nasal drip, lungs that just can't seem to stop clearing mucus, GERD, allergies, and the list goes on. Over the years and with some tips from other CFers I created a mental checklist that I go through while trying to combat my night cough. I figured I would put words on paper because it took me 30 years to come up with this list and thought it may help someone else that is on the brink of sanity because of a CF night cough.

1. Inhaler: Sometimes this does the trick to open my airways and clear out whatever is causing my cough. Sounds too easy, right? Yeah, it usually isn't this simple.
2. Cough Drops: Cough drops do nothing to my CF cough, but sometimes when I start coughing due to CF my throat gets irritated and it turns into a constant cough that isn't so much CF related. Or there are times when my cough is due to a cold and this can help. Again,  it isn't usually this simple, but I always try the easy fixes first. 
3. Snacks: I learned this trick pre-diagnosis when I was a kid and used to sit on the couch at 2am and eat pretzels when my night cough would attack. Something about not being able to cough and swallow food at the same time can be enough to settle a nonstop cough. Weird, but true. Tea may work for some people, but for me it has to be actual food. Between night time cough drops and snacks I am sure my dentist hates me.
4. Pillow Mountain: This is a tip another CFer gave me. Bare with me because it sounds crazy. Sometimes if my cough is due to sinus issues this does the trick. I sit with my legs crossed. Next, I stack as many pillows as I can into a tall pile right in front of my crossed legs. When the tower is tall enough that it comes at least chest level (but higher is better) I can then drape my body (face first) over them. Basically, I sleep sitting up (slightly hunched forward) with my head leaning forward on the pillows to keep the mucus from draining down my throat. The first time someone suggested this to me I thought they were crazy. But you know what? Coughing all night is even crazier and this trick has allowed me many nights of (slightly uncomfortable) sleep which beats a sleepless night any day!
5. Vest: I personally don't think the Vest is the best for of airway clearance for me in the waking hours, but I do it because I am stuck doing nebs anyway. However, the vest can be my night cough miracle cure. When I have tried everything to calm my cough and sleep and am at the brink of going crazy I can usually convince myself to move to the living room with my blankets and pillows. I then stap on my vest and set the time to 60 min (the max), and start shaking. My body is usually so exhausted the second my cough stops I fall asleep despite the shaking of the Vest. It can be so hard to drag yourself out of bed, and it can feel so unappealing to shake violently while coughing and trying to sleep, but this set up has seriously saved my sanity more times than I can count.

Can you tell what I have been doing the last few nights? Yup, coughing and all of the above: #1-5.

Kaylee Chatter Part 8

"Some kids in school try to smack flies that get in the class. My friend says she kills them sometimes. She calls it kill! That is really bad for the flies. I guess kids just don't know how bad that is for the flies. They are only five (years old) so they just don't know."

My childhood stuffed animal has become one of Kaylee's favorites. She brought the stuffed animal  along for her flu shot. That evening she told me,
"Kitty helped me be brave. Maybe because she has a little mommy love in it."

My husband: "I love you."
Kaylee: "I know. I just don't think about it all the time. Like I don't spend all day thinking about how much my parents love me. That's just not my lifestyle."

When Kaylee started school I bought us matching school shirts. I volunteer once a week and usually just put on the school shirt because otherwise when would I wear it? Last week I was getting dressed when Kaylee walked in.
"You're wearing that shirt again? That is so embarrassing for me! I mean you have good quality clothes you could wear. You don't have to wear that shirt everyday."

Time Is Flying By

This happens every single year and yet it still surprises me! The second Halloween comes the rest of the year seems to be a blur. Life just flies by after Halloween night. How are we already to Thanksgiving break? I wanted to do a quick life update because things are going by too quickly for me to document.

So many things are changing in our home. Kaylee's last day of soccer is tomorrow. I remember the day I signed her up in April I looked at the end date, November, and it felt so very far away. And her last day is tomorrow! The whole season went so fast! I loved watching Kaylee play soccer and enjoyed going to all her practices and games up until about a week ago. The weather has turned wet and cold and now I am ready to not stand in the wet cold grass at 9am on a Saturday. However, I am excited to watch her again when the weather is nice next summer.

I started a girl scout troop with a neighbor a few months ago. I am having so much fun in my low pressure 4 hour a month "teaching" job. It has reminded me how much I love working with kids and with only 7 kids total it is a dream job. Except the non-existent pay...that part isn't so dream like. I absolutely love having some quality time with Kaylee and other girls her age. I love the female empowerment, I love fostering their creativity, I love watching the girls work together, and I love this age.

I have also been helping in Kaylee's classroom every Tuesday and it has been so fun to watch how much the kids have changed. It has been amazing to watch Kaylee's progress and to be an active part of her schooling. I love seeing her in class and interacting with her friends. I also love sneaking peeks at her work and witnessing the growth in what she knows and understands. I think learning to read and write is just as exciting as when  kids learn to talk the first time. It opens up their world so very much!

I am excited to enjoy Kaylee's first true school vacation and nine consecutive days that I get her all to myself (and my husband).

Proving CF Wrong

Chronic illness can teach so many invaluable lessons along the way. CF has taught me to value every single day and to really enjoy every good day. Knowing at any moment CF can make my day miserable (low energy, GI issues, shortness of breath, respiratory infections, the list goes on) makes me so appreciative of every day I wake up and feel good! It has taught me to appreciate those around me as well because we never know how much time we have with one another, not only because of CF, but because those of us with chronic illness realize how fragile life is and no one is ever promised another moment.

However, in order to survive with a chronic illness and still function in a chronically well world I have found that I have adopted some less than healthy lessons along the way. I have learned over the years how to play pretend in a way that I can almost fool myself. Through the years I have perfected how to pretend everything is okay, put a smile on my face and act as if everything is fine even when I am so very far from okay. Living a life when my health often demands my attention and tries to take center stage on a regular basis has caused me to pretend to the outside world that those problems and sickness and hurt just don't exist. This has allowed me to get out and still live a fulfilled life despite CF trying to get in the way. And yet, when we pretend everything is okay (enough) everyday of our lives it can get tricky to know when to stop pretending and put ourselves, and even CF, first.

I, personally, could give a million examples of when I waited too long to raise the white flag and ask for help. Whether pushing through made me wait too long to call the doctor, not change antibiotics as soon as I should, commit to things I shouldn't, or show up when I should have stayed home it became a pattern I didn't know how to stop. Pretending I was fine and pushing through became such a way of life I got to the point that I just stopped being authentic in what I could handle.

See the problem is that by doing everything even when I feel bad I felt I was proving CF wrong and not letting it dictate my life. You hear it all the time in the CF community. "CF is part of me, but it doesn't control me" type "inspiring" quotes get ingrained into your mind. It is an attitude that is common among many of us with CF (and chronic illness in general). Push through, preserver,  and live the life you want despite your health issues. At times this can be a good philosophy, but it can also discredit how much CF does play a role in our lives. If we are super honest with ourselves and with one another CF DOES get in the way. And you know what? It is okay to admit that it does at times.

In an attempt to not let CF win I would try to do too much just to spite Cystic Fibrosis. Yeah, I have an infection that is causing me too feel as if I am full to the brim with toxic waste and my fevers are causing every muscle in my body to ache, but if I pop enough ibuprofen I can show up and help out because otherwise CF stole this opportunity from me. Sure, I feel like death, but I don't want CF to ruin this time with my daughter/husband/friend so I will drag my tired and broken body to that birthday party/outing/dinner/event and pretend I am having fun.

And in the end I am realizing that by trying to prove to CF that I can pretend it doesn't exist and live a "normal" life I am actually letting Cystic Fibrosis have the upper hand. At times I am making choices to prove CF wrong rather than because I genuinely want to make that choice. When I feel bad, I would rather curl up in bed with a book or take a nap, but because CF is making me feel bad I often force myself out of the house anyway. So, in reality I am going out because of CF rather than staying in for me.

As my life gets more hectic I am trying to learn to balance what I can handle and what I genuinely want to do for me and my family and not just to prove to myself that CF doesn't have the upper hand. After 20 years of pretending I am realizing old habit are hard to break, but as I approach my mid-30s I realize I don't need to hang on to some of the old unhealthy habits of my youth and what better time to change for the better than today?

Medication Rules

Anyone else feel like trying to take oral antibiotics the right way is somewhat of a puzzle? You would think popping a pill two times a day is easy, but of course they have to add all these "rules" that complicate everything! And at my age if I am going to take an antibiotic I am going to take the damn thing right because I am not messing around when it comes to CF.


My current antibiotic rules per my pill bottle:


"Take this medication 2 hours before or 6 hours after meals, antacids, vitamins/minerals."
Also
"Do not take with dairy"


Before I head to the gym I usually drink a glass of milk, but since I can't take cipro with dairy or 6 (Yes, six) hours after eating I figured this is the best time to fit in my antibiotic. So my pre-gym routine is currently (and temporarily) a glass of water, cipro, and minocycline. Easy enough! By the time I work out, shower, dress, and do treatments I am around the two hour mark.


The evening dose is a little trickier. I take an antacid in the evening (I know you are supposed to take it in the morning. Long story, but basically I do it all wrong so don't be like me). Antacids and cipro don't mix. Fair enough. I also take Orkambi in the evening which needs to be taken with fatty food. Oh wait, Cipro can't be in that mix either. So I had the perfect plan. Eat dinner, six hours later take my antibiotics. Set my alarm for 2 hours and go to bed. I had my Orkambi, enzymes, my night meds and some string cheese sitting next to a glass of water next to my bed waiting for my alarm to go off. Great idea, right?


Except in the morning I woke up to realize I must have never actually set the alarm because there everything sat untouched next to my bed. Sigh! I am frustrated with myself because I was up coughing at one point and I wish I would have been coherent enough to see my meds next to the bed. So I got my antibiotics in, but missed everything else last night!


And before I sound like a spoiled brat, I do realize this puzzling oral antibiotic schedule is a piece of cake compared to IV schedules or hospital stays and I am grateful that I am able to do oral antibiotics (and I super hope it works this time)!

October

The scorching summer sun has started to relax, shining less intensely and calling it quits earlier and earlier with each passing day. The clouds, something of an anomaly in the summer have started to make their brilliant fall appearance. The sky roars to life every few hours as evening starts to approach, with geese in formation finding warmer parts to call their winter home.




Fall is always bittersweet to me. The weather cools to perfect temperatures which brightens my outdoor loving heart. And yet, by October, the adventures of summer are only memories and the beaches, lakes and rivers sit alone waiting for the weather to warm again. I spend hours in the garden, removing the summer crops until my vegetable beds are vacant. A wave of sadness washed over me as I realize fresh melons, tomatoes and berries just bursting with sweetness won't grace our tables until the long cold days of winter, and the newness of spring have already passed. The seeds for the winter garden have been nestled in starter containers under a heat lamp waiting for the right time to be sown in my now lonely vegetable beds.


Warm cozy sweaters and scarves just can't possibly warm my soul the way the hot summer sun can. For now, I am finding joy in the kaleidoscope of fall leaves that are swirling around my neighborhood and the promise of magic in the upcoming holiday season. But there is still a little corner of my soul that is pouting because I already miss summer.

Fevers, Flu Shots, and Colds

I was hesitant to write this post because the last thing I want to do is scare someone away from getting a flu shot since you getting a flu shot could save a cyster's (or fibro's) life and all. So I am going to preface this by saying that I have always reacted strongly to vaccinations. I get a fever from every single vaccination every single time! So this years flu shot was no different.


Monday morning I woke up with a little strange tickle in my throat. I kept wondering if the sensation could possibly be a cold, or allergies, or my imagination (funny how these symptoms popped up right after I did a post about how well my body was behaving). I had scheduled flu shots for both me and Kaylee that afternoon and I was a bit worried I may be coming down with something and wondered if I should delay the shot. I decided to get the shot anyway because I am going to be around a lot of kids in the next coming weeks and just didn't want to risk anything. We went to get our flu shots immediately after I picked Kaylee up from school. Poor kid had no idea that the errand we had to run would end with her getting poked with a needle. She cried when I explained why we were at the doctor and even tried to hide her arm from the nurse. The nurse told Kaylee to look the other direction. I started to say, "Focus on my..." when the nurse interrupted to say, "all done." Kaylee shouted with excitement, "That was TOO fast!" She didn't even realize that she just got a shot. She actually left the little shot room with a smile plastered on her face. Whew.


I was brave when I got my shot too and we went to celebrate with a little ice cream. That night, I got fevers which we all expected. The next day same thing and once again, expected. I should note Kaylee carried on as if nothing happened and no sign on a fever at all.


As soon as the fevers passed my cold hit. I had the usual, coughing incessantly for 24 hours followed by zero voice (from all the coughing). When the incessant coughing finally stopped I was left with a heavy chest and copious amount of watery mucus (happens every time my cold settles to my chest). And now I am in that weird period that my mucus is thick and gross and I know that in the next few days my mucus will get worse and I will be calling for antibiotics or it will suddenly clear up and I will be able to move on with life. Sigh! I have so much going on this upcoming week that I am really hoping my poor body can pull through this one.

Two Years and Counting

This month officially marks TWO years hospital free!! I can't remember the exact date I was admitted so I am sure I am a week or two early, but I am celebrating now anyway. It is also 1 1/4 years IV free!


It has also been a little over 2 years on Orkambi. Coincidence? I think not! I can't wait to see what new meds are around the corner and how much healthier all of us in the CF community can be!!

Kaylee Chatter Part 7

"I used to think if we drove at midnight we would be the first people on the road. After we went to the wedding (we drove through the night) now I know that isn't true because there are always cars driving on the road!"


K: "Look there is a gas station right by Nana's house. Why didn't we go to this one?"
M: "We go to the other one because the gas is a lot cheaper."
...
K: "If we had too much money we would have to look for the most expensive gas station. Then when we paid we would be like, whew I am so glad we got rid of some of our money!"


K: "When we eat chicken how do they make it not move?"
M: (hoping she wasn't asking what I knew she was asking) "What do you mean?"
K: "Like the chicken we eat doesn't look like a normal chicken and it doesn't move. How do they do they get it to not move around our plate?"
(My kid cried when a bug dies...I didn't have the heart to tell her they kill chickens so she can eat them so I took the easy way out)
M: "Uh, hmm. That is a great question. Maybe ask your dad when he gets home from work."


My husband was holding Kaylee and walked by our bathroom mirror
K: "Wow!! That is the first time I have seen my whole body. Look!!"
We don't have a full length mirror and so I guess she hasn't really seen her whole self in oh 5 years or so.


K: (she came into my room in the morning and came to snuggle a bit before starting the day. My husband didn't budge and just happened to be snoring that morning. She was so still I thought she had fallen asleep. Suddenly she popped up, "Wow, daddy sounds just like a cow!!"
She was so right, he sounded identical to a very noisy cow!!

Changing It Up Or Not

With Kaylee in school I have more time to focus on my health and I decided two days a week I will sleep in (until 6:30) and go to the gym after I drop Kaylee off to school. I still do my early mornings (5:20) three days a week because I actually really enjoy the early morning routine, but I know with winter coming I need to ensure I am getting at least 7 hours of sleep a night to fight off those winter germs.

The other benefit to working out later, outside of the sleep, is I wanted to change my workouts a bit in hopes that some variety may be beneficially to my lungs. On my late gym days I use the treadmill and have been attempting to speed walk for 5 min followed by jogging for five minutes. My goal was to work up to jogging the entire workout. I was pleasantly surprised how well my lungs took to the jogging walking combo and was hoping to see improvements in my jogging. (***Can I just throw in a side note here: In May 2014 I was told I could no longer jog due to medical reasons... take that suckers!!!CF can kiss my ass! Moving on...) However, as I jog more and walk less I have noticed some weird twinges in my knee post workout. Workout injuries are my biggest fear because I can't imagine what would happen to my poor lungs if I was injured and unable to workout. And it is so hard to get into a good workout routine and once you stop even for a week or two it can be torture trying to restart.

I am going to buy new running shoes in hopes my old pair was just a little too old to offer the appropriate support. I hope it works! Even though I absolutely adore swimming and I never have any weird aches or injuries from swimming a part of me thinks my lungs have gotten used to swimming and I don't notice as much clearance as I used to. In theory, I could work on my time and try to swim faster to give my lungs that extra boost, but I still need to be careful not to workout too hard or my O2 drops and being in a pool it isn't like wearing oxygen is an option. So I was hoping this small change in routine two days a week could provide the extra clearance I would like.

Kindergarten

A little over five years ago you were placed on my chest and we became almost inseparable. We were together 24/7 for most of your early life and your life intertwined with mine so much that figuring out where yours started and mine ended became blurred. Sure, there were weekly dates with your Nana and Papa, and daddy date afternoons, but mostly it was you and me, kid. And I loved nothing more than to spend my days with you.

And then three weeks ago you went to kindergarten.

This new and exciting journey started for you, the world expanding in ways you had no idea was even possible. Your mind opened to new experiences and thoughts and ideas. Your journey of exploring the world, was just beginning and you standing at the cusp of it felt large, and beautiful, miraculous, and overwhelming.

Your first few weeks brought a bit of separation anxiety, mornings of you grabbing me a little bit tighter at drop off, some tears in your eyes, and a large dose of uncertainty at this new expanding world. And every pick up was full of your love for school and declarations of "it wasn't worth the tears." And yet each morning that touch of separation anxiety appeared again, only to be eased the second I disappeared from sight.

But while your world was expanding and growing, mine felt like it was shrinking. My days continued very similar to how they had before. I went to Costco to get groceries. But there was no shouting, "all aboard!" cuing my favorite little girl to hop back on the side of the cart before changing aisles. The absence of chatter was deafening as washed the dishes or folded laundry. There was no little girl helping me pull the freshly washed sheets on my bed. I did my fall baking as I did every year, but there was no miniature chair pulled up to the counter with little feet standing on tip toes and little hands helping me stir. And to be perfectly honest those first few weeks were tougher on me than they were for you.

As we are finishing our third week of school, you're getting used to the routine and feeling less anxious at drop off. And just as you are getting used to your new routine, I am getting used to my new routine as well. I am finding new ways to spend my time and replacing old traditions with new ones. I feel overwhelmingly grateful I was able to spend so much time with you for the first five years of your life. I feel even more grateful I am well enough to watch you take your first real steps of independence into the world. What a magical journey we have been on!

Now vs Then

This week my husband and I had a little get away. We went about an hour and a half Northeast to a historic old town to spend some time in nature just the two of us- child free! I was excited to get a little alone time with my husband before school starts and we thought of it as an early anniversary vacation (we have our 7 year wedding anniversary early next month). My only little concern was that we would 2,500 feet higher in elevation than we currently live (which is essentially sea level) and I was a little concerned with how my lung would handle the elevation. We figured we would give it a shot and if it was a little too high our hiking and nature weekend would end up being a laying around and relaxing weekend.

As my GPS notified us that our hotel was quickly approaching I realized that the car was going up a steep hill. As the car drove higher and higher I started to get worried. We live in a valley so our landscape is as flat as a landscape can be and I just wasn't sure if the hills in this town would make walking a challenge. We heard the town we were visiting wasn't known for good parking and that our best bet was to walk into town for restaurants. Would my lungs be able to handle these steep hills at a higher elevation? I figured there was nothing we could do about it at this point so we hoped for the best.

When we checked into our hotel we realized our room was on the second floor up a very steep and curvy set of stairs. Stairs still give me a touch of anxiety because for a long time I just physically could not climb a flight of stairs. When I was sick for a couple years I would have to climb stairs on all fours because I did not have the lung power to walk them like a normal person. Needless to say stairs bring back bad memories. Again, I was wondering how I was going to make it through this vacation.

All of these secret little fears ended up being fruitless. I handled the hills and the stairs like a champ! Sure, I may have been a little more winded than the normal person, but I also only have 1/3 of the lung function that a normal person has. The entire trip I did not need to stop and rest on the hills or the stairs and we walked a ton of hills! And even more amazing I survived a hike that was a straight downward hill that I would old never have even attempted a few years ago in fear that I would never make it back up the hill. Sure we walked back up the hill very slowly. But my husband was so patient and wouldn't let me get frustrated with how often I needed to rest. He even carried me on his back for a little to give me a rest (although I really didn't need the help it was a nice little rest).

As we were driving back home I couldn't help, but be in awe with my body. I was able to do so much and my CF hardly got in the way of our vacation (those darn treatments are always such a pain on vacation because we can't just get up and go) and I could hardly believe I was the same person I was a few years ago. It also made me realize once again lung function is just a number. I have been hovering in the low 30s for a few years now, but what I am able to do now vs a few years ago is extremely different! I have a feeling consistently swimming has helped condition my lungs and body so that I am able to much more with my little 33(ish)% now than I was even a year ago!

I know this newfound amazement may vanish with the next cold or exacerbation, but for now I am reveling in a body that has dealt with so very much and still seems to power through!

Race Against Time

Hopefully, you have been hearing some really exciting news regarding Cystic Fibrosis and medicine in general lately. Science is beyond amazing and even my pessimistic side that is adamant that I will never see a cure for CF in my lifetime is starting to fade. And I am certain that young children with CF will never understand what the disease was like for us older CFers and that is an amazing thing!

There is a part of me though that has to hold my breath or swallow my excitement. The newest medications for CF are still years away and even though these very well could stop CF progression in it's tracks I can't help, but worry these meds may come just a little too late. I have pseudomonas, I have scarring and I have a disease that has progressed a lot in my 33 years. I wonder if I will still have these lungs by the time these medications come along. I lost a few friends right before Orkambi became available and know even more that were transplanted before being able to try any of Vertex's meds. I really hope that I can at least try some of these third generation drugs and I hope that I will be around long enough to see them come to market.

Sometimes life with CF can make looking into the future a daunting task. Thinking how hard my lungs have worked and how hard this disease has worked towards destroying my body in the past 33 years it can make the future seem bleak at best. With all this scarring and bacteria how can I fight against CF long term? Despite doing everything my doctors ask of me plus more I still see my lungs struggle just to keep up with this ever growing army of bacteria. The future looks long and treacherous. Thinking long term is frightening and exhausting at the same time. Realistically, given what is available today I can't imagine keeping these lungs long enough to see old agr.

Hearing about these new medical advances in CF allows me to make mini goals to reach for along the way to old agee. They have become a mental rest stop along the way. Maybe I can fight this battle for 5 more years and then I will get these meds to help allieviate my exhausted body from this raging war. Yes, 5 years sounds so much easier than "forever" and I can wrap my mind around making it just 5 more years. It makes the future less exhausting, unachievable and scary. If I keep up this all consuming battle for just a few more year back up will arrive and the long term fight may be a bit more feasible.

There are never any guarantees for tomorrow and this is even more true when you have a progressive disease. I know I may not gain as much as healthier CFers from these medication, but more than anything I just want the chance to try. A chance to live to see old age even if these lungs don't improve. I can manage a pretty nice life with these scarred and battered lungs. For now, I am doing everything in my power to be here as long as possible and a goal of 5 years actually feels doable. So I wake up each morning and I swim and I do all my treatments and I take a few supplements on the side. And I feel I have enough reserves for the next few years. Let's hope Science can meet me half way!

Only Children

I was laying in bed on a warm summer morning, fan whirring above me and sunlight pouring through the blinds. Kaylee, only a few days old, was nuzzled under my chin and I was surrounded by the smell of her sweet milky breath and my only thought was that this would not be the last newborn of mine that I would snuggle. I believed with every ounce of my soul in that very moment that I was made to be a mother and that sweet Kaylee would not be the only child I would mother.

As time went on the longing for another baby grew stronger. When Kaylee turned one I felt such a strong desire to have another child that I am sure if CF wasn't a factor I would have been one of those mothers with two children under the age of two...on purpose! As much as my heart told me I needed another child, my mind knew that with my health it was not a possibility. The problem with the heart is that is doesn't listen to reason. The feelings only intensified when Kaylee was around two because everyone seemed to ask, "So when are you having another?" and all my friends around me started announcing their second pregnancies. The heartbreak I felt every time someone asked me about baby number two was almost too much to bare.

And as Kaylee got older I got comments from others about why I needed to have at least one more child. Without knowing my circumstances people (often strangers) would say things like, if she is an only she will be weird, she will be lonely, she will be social awkward. And I am not sure why anyone would tell a mother that her family size will be detrimental to their child's wellbeing. I will never understand how hurtful and heartless some people can be. And of all the negative family dynamics in this world (abuse, neglect, addiction) I think having a small family is pretty low on the list of negatives. And yet when you are desperate for another child these comments add layers of guilt to your existing grief.

When Kaylee was around 3 and my friends were in the throws of new walkers mixed with toddlers I started to see a new perspective. Yes, I still would have loved another baby, but at the same time I realized there are major benefits to having only one. There are pros and cons to every family situation, but my perspective switched from focusing on all the cons to focusing on the pros of having an only child. And you know what? There are a ton of benefits to having an only child! And as Kaylee gets older I am reassured that all those worries that she will be weird or antisocial or lonely just aren't true! Over time we met more and more only children (there are 3 other only children on our small street and one of Kaylee's best friends is an only) and seeing these happy well adjusted only children was more proof that families do not come in a one size fits all.

Last night, a neighbor saw me at the park. She was there with her only child who is 8. We were chatting as the kids were playing and she asked if we were going to have another. For the first time I didn't even flitch when the question was asked and was confident in saying, "Nope, we are done." She confided in me that she was not preventing pregnancy, but wasn't technically trying for a baby. She said she was leaving it up to fate if another baby comes along. With her own fertility issues you would think she would be more understanding that often people don't just get to choose their family size and spacing. Yet she felt the need to tell me what to do with my fertility. She said, "But look how beautiful the baby you made is, shouldn't we all just fill this world with children that are good people and will make this world a better place?" And for the first time in my life I was 100% sure when I said, "We feel we have the perfect little family and are content with Kaylee."

In the past these conversations would have resulted in my crying when I got home, but somewhere along the line that has changed. I went home feeling eternally grateful for the life I do have. My husband and I love each other dearly and we are both in love with this amazing child we made. If it weren't for CF we would not have chosen to be a small family of three and yet I can honestly say that I can not imagine our lives any other way.

Swapping

One of my favorite parts of summer is gardening and eating fresh produce. I live in a part of the country that growing food is easy (minus the fact that we don't get a drop of rain until winter) and so backyard gardens or fruit trees are common. I have several fruit trees, but most are either too young to give much fruit yet or don't produce until fall or winter. Compared to the never ending flush of berries that comes in spring and early summer I find this month a bit dull on the gardening front. Outside of melons which we have just started harvesting, most of our garden produce has been the same produce we have been harvesting since early summer. There are only so many zucchinis you need, am I right?

Last year when I found out about a neighborhood crop swap, I found the perfect solution for the mid summer garden blues. A few times a summer our neighborhood has a large crop swap where everyone gathers together with their excess produce and they swap for things they do not grow. This is fun, but the real benefit came in meeting other gardeners to individually swap with throughout the summer or whenever new produce starts to ripen. This year I have given away tomatoes, cucumbers, and zucchinis (all of which have been overtaking my counters and fridge) for lemons, nectarines, apples, peaches, pears, figs, leeks, sweet peppers and kale. It has been so successful that between swapping and picking from my own garden we haven't had to purchase produce this summer (outside of onions, bananas and a few recipe specific ingredients).

My goal in the next few years (mainly when my fruit trees start producing large quantities) is to be able to grow enough food in the summer that we won't need to swap produce even though I am sure we will still do it just for fun!

Skinny Summer

With CF you just can't seem to have it all. This has been one of my healthiest summers lung wise in several years and I am so grateful for that! However, life with CF would not be life with CF unless something was a bit off. So despite feeling really good overall (minus a few low energy days), being back in my exercise routine, getting through each day without a nap(!!), I have one little CF issue to work on. For some reason summer is such a hard time for me to keep my weight up!

If you followed my blog you may know that maintaining my weight isn't a huge issue for me (except when it was a huge deal) and I can usually manage to maintain at least 120 pounds. Being 5'4" the doctors start giving me the side eye when I weight in 120lbs, but they don't get too freaked out unless I drop below the 120 threshold. Right now I am sitting right at around 119/120 and I know that I need to be careful not to let it slip and lower.

You know what though? Summer is the time for juicing as much produce as you can gather. Summer is for eating plump red tomatoes right off the vine. Summer is for popping fresh blackberries and blueberries into your mouth on a hot summer afternoons. Summer is for ice cold watermelon poolside. Summer is the time I like eating fresh and light and as much from my garden as I can. But now that I can feel my shorts falling lower on my hips and my scale is slowly disappointing me I know I need to pull out some of my old weight gaining skills and start putting on my winter weight...in July

Kaylee Chatter Part 6

K soon after turning 5: "I have to go dating now that I am a grown up"
Me: "who are you going on a date with?"
Kay: "My mother and father, of course!! We are going dancing."
Me (internally): "whew"


Kay: "It is more common for people to have freckles on their neck."
Me: "Is it? I never noticed before."
Kay: "Yeah, it is the most legal way to have freckles."
Me: ...


Kay: "Look there is a hiddiup parking spot!"
Me: "What?"
Kay: A hiddiup spot... see"
Me: :Oh yes, that is a handicap parking spot!"


After seeing someone with a crop top:
Kay: "I think those shirts are people with a baby in their belly so their baby can get some fresh air."


My status as the only person in the world she can picture marrying has dropped down a notch:
Kay: "I am going to marry you someday.... unless I find someone better.

Self Doubt

"Why are you so damn lazy?"
"If you just put in some effort you could have been a little more productive."
"You just lack motivation!"

Have any of you with chronic illness heard these words? Worse yet were these words you said to yourself? I am completely guilty of saying these things to myself even though I know they are not justified and absolutely not true. Of all people you would think I would have compassion for my body and for myself on the hard CF days and yet I can find myself filled with self doubt at my very own disease. Can you believe that? I have had CF for 33 years and have progressed drastically in the past four years and I still question myself when it comes to how sick I am.

Today was a rough day. It could be because I didn't sleep enough or because the little sleep I got was spent coughing. It could be that I was really busy this week and I overexerted myself. I will never be sure of the reason, but these days happen every once in a while. I woke up and went to the gym like usual, but when I got home I was utterly exhausted. I felt a little achy and my body hurt all over. All I wanted to do was lay in bed and sleep all day long! I decided to push through with a few cups of coffee and make zucchini bread with Kaylee. Of course, once the bread was in the oven my body revolted. The dishes were thrown in the sink and even the dirty bread pans were left on the stove top. And a little voice in my head reprimanded me for leaving such a mess. When that voice gets going I start to wonder if I am...lazy. I try to reassure myself that people with chronic illness have these days sometimes and that it is okay to take a day to relax, but that seed of doubt has been planted.

Thankfully, my mom had planned to take Kaylee to an art museum for the afternoon and so I was able to indulge in a very long nap. That break was a huge lifesaver and allowed me to have the energy to make dinner, but as I was setting the dishes on the table I noticed that my sink was now overflowing with the morning dishes plus the dinner dishes. I also had an untouched to-do list hanging over my head and the self doubt started to creep in once again. How hard would it be to throw in one load of laundry? Would it really be that hard to put away your shipment of medication that came this afternoon? Are you sitting writing a blog post because you really are too tired to do something more productive around the house or is it more because you don't want to do something more productive around the house.

I just feel such a disconnect from my body/health from my mind/spirit. I feel like I should be able to run around and get everything on my list done...and more! I feel like I should wake up everyday full of life and energy. I feel normal! But my body is not normal and it reminds me on days like this. That disconnect is where those voices come from. The part of me that feels like a normal human being isn't always empathetic of my body that just so happens to be a little bit broken. It is hard to have a body that can be so unpredictable. It is hard to not know what each day will look like energy and health wise. It is hard not to doubt yourself when nobody you know in your age group struggles with these types of issues. I really try to work hard on showing myself compassion and kindness. I know my body works harder than other 33 year old bodies. I know my lungs are in constant war against the bacteria that lives in them. I know I will never be the same as my peer group.

I just sometimes forget.

Dog Days Of Summer

Summer is the absolute best time of the year. Long days, a garden bursting with life, and hot afternoons spent splashing in water is pretty much my idea of happiness! Last summer I was tethered to IVs, a week long case of the hives, and then had a minor non-CF related surgery and I felt like my summer slipped by before I could fully enjoy it! I feel hesitant to even write this next line lest I jinx myself, but this summer I have felt really well and I am taking full advantage of enjoying every minute! In all the excitement of summer I wanted to update a few milestones my daughter hit this summer.

My parents live two towns over and we spend most Sunday afternoons in their pool. Kaylee, always a cautious child, has had no desire to swim without her puddle jumper and insists that she will never go under water- ever! She may be telling the truth about never going under water. Back in my high school days I was a swim teacher and I have reserved a few afternoons these past weeks teaching Kaylee to swim, but she has always insisted that I never ever let go of her. I knew she would eventually find her courage and always respected her desire to feel safe in my arms.

Last Sunday, out of the blue she insisted she was ready to try swimming solo and told me she would push off the step and swim to me. When this kid puts her mind to something she really gets determined. Needless to say, she was successful! Even though she didn't get very far distance wise, she was able to swim independently for a short distance. Of course, I am proud of her for learning to swim, but I am more proud of her confidence in herself and overcoming her fear. After she was successful the first time she wanted to keep practicing over and over. She must have pushed off that step and swam to my arms four dozen times. It was very reminiscent of when Kaylee learned to walk. One day she held my hands and refused to do anything, but practice walking until she mastered it. She can be one determines little kid.

The other milestone she hit was a little less huge as far as milestones, but it is a quintessential childhood summer right of passage. Kaylee officially learned to skip rocks on water. She has been trying all summer, but the rocks always plunk down heavily straight to the bottom of the lake/river. Yesterday we spend the entire day at one of our favorite lakes and she finally mastered the technique to make rocks skip across the water.

We only have 6 weeks left until Kaylee officially starts school and I am trying to squeeze in as much fun and as much quality time with Kaylee as we can! I hope you are all enjoying a summer of good health and fun memories in the sun as well!

Motherhood, Yoga, and Transplant

When I stared my blog six years ago I was hoping to meet and connect with other women who wanted to experience parenthood. At the time I didn't know any other CF women that had children and was hoping to make a community for women who wanted to become mothers (whether through conceiving, adopting, surrogacy, or even step parenting). As the years went by I met so many amazingly strong cysters who found their way to motherhood and each story is unique and beautiful. The CF community is such an inspiring and absolutely heartbreaking community to be a part of.


Once in a while someone's story touches you in such a way that it brings tears to your eyes and fills you with a type of understanding that can't be found outside of the CF community. I recently learned the story of Selwa Mitchell through her video made by fotolanthropy. Her story is raw and real and highlights the horrors of CF while also serving as a beacon of hope for those who are in the depths of end stage lung disease. Selwa is a mother of two who has experienced CF at it's harshest, but found refuge in yoga and was eventually given a second chance through a lung transplant.



Please take a moment and check out this beautiful video (you may need a tissue...)
https://fotolanthropy.com/selwa-mitchell/

Hello Early Morning

Since I know you have been here before:


It is the first morning of getting back into my gym routine.
Alarm rings.
Is it the middle of the night? No? Shit, it is my gym day.
Push snooze
Alarm rings
Push snooze
Alarm rings
Turn alarm off and sit up. Debate laying back down to sleep just a little longer. Fight the urge and get up. Get bathing suit on and drink a glass of milk.
Think of a million reasons why the gym can wait until tomorrow.
Fight those negative thoughts, grab gym bag and walk out the door.
Realize it feels chilly and debate turning back and going inside. Who wants to swim when it is chilly?
Drive to gym. Turn off car and procrastinate a few seconds and worry you may be an utter failure at the gym and humiliate yourself by being incredibly out of shape.
Ignore the negativity and go inside.
See the usual girl at the front desk and feel a sense of relief because the familiarity of the old routine is setting in.
Go to the locker room to find the smile of a woman that always swims before you. "The water is great today."
Stand at the edge of the pool, jump in and start swimming. It feels familiar and, dare I say, nice?
Do 10 laps and feel an unfamiliar ache in your triceps and realize your still 60 laps from doing your usual workout. Have a quick moment of panic.
Realize your arms are tired before your lungs and feel pure joy! Get a second wind and swim on.
Realize you won't get your full 70 laps in and allow yourself to settle for 50.
Hope in the shower and feel like a bad ass for going to the gym and not dying.
Spend the rest of the day feeling proud and exhausted.

Rinse and repeat everyday... for the rest of your life.

Returning To The Pool

The pool is open! The pool is open!! The pool is open!!!


Can you tell I am excited. If you remember in April (holy crap, it was that long ago?) my gym closed their pool due to plumbing issues and then decided since the pool was out of commission they would refinish it (which it desperately needed).


Well, after seriously way too long they are finally open again tomorrow morning! So guess where I will be? Trying to see if I can pull myself out of bed at 5:20 again (eek) an attempt to swim again. I am actually super excited to be back at the pool every morning. I tried to still work out without the pool, but nothing gives my lungs a work out like swimming and it was really hard to stay consistent with exercise that I just didn't like.


Now I need to dust off my fitbit flex 2 (which just depressed me when the pool was closed) and see what these old lungs can do...

Life At The Moment

I opened my fridge and realized this shelf perfectly capture my life in summertime. It also represents the my absolute favorite and least favorite aspects of summer.

A fridge full of meds, produce from the garden (plums, blackberries, cucumbers, tomatoes and green beans), and sausages for barbecuing at the beach.

I coughed up a rock

Sometimes when you have CF weird shit happens that nobody else would understand!


On Monday, my chest felt tight and I kept complaining to my husband that everything in my chest felt really irritated. I thought it felt like allergies, but given the time of year it seemed doubtful. As the day went on my cough become constant, but it was a deep irritated cough which is not at all my typical CF cough and I started to get worried.


Wednesday, we were driving to the river to spend the afternoon on the beach and thank goodness my husband was driving because my cough was so violent, I had to brace myself against the dashboard and each cough brought a set of stars that danced around my vision. Anyone else get that during a bad coughing fit? Of course, Kaylee is so used to my cough she was chattering away as if nothing was happening!


Wednesday night just as I was drifting off to sleep, I was awoken by a cough that felt as if it were coming from the depth of my core. That sounds dramatic, but seriously, I think it came from a part of my lungs that I never knew existed or at least not in the past 15 years. And the next thing I knew I was coughing so hard, I couldn't breath and started choking, and coughing and hoping I wouldn't pass out. And then, my lungs expelled a small rock!


Okay, of course it wasn't a real rock, but holy crap if I didn't know better I would swear it truly was a rock. And to make this gross story even more disgusting, I will point out the obvious! I expelled a plug that was so old and so dry that I can't help, but wonder if it was created before Kaylee. Because I have never in my life had a plug like that.


The next day I felt 100 x better and my irritated lungs calmed down and my nagging cough disappeared. And when I told my family in the morning Kaylee cheered before asking, "Did you take a picture of it?" This kid knows me too well, because of course I took a picture of it. It is not everyday you cough out a plug that was probably around before you met your husband. That little guy has been with me so long that I had to keep a picture keepsake.


Like I said, sometimes shit happens to people with CF that nobody else could possibly understand!

Why Don't I have CF

Kaylee: "How did you get CF mom?"
Me: Very simple explanation of genetics.
Kaylee: "So why didn't I get CF?"
Me: "Well, mommy gave you one CF gene, but daddy did not give you the gene. You need 2 genes to have CF.
Kaylee: clearly upset, "WHY didn't daddy give me the gene? I want CF just like YOU!"

*a few seconds later*

Kaylee: "Will my kids have CF? Because if they do I will be really jealous!"

Can my daughter always be this naïve and innocent when it comes to my disease? And can I always remain perfect in her eyes? No? I guess I should enjoy it while it lasts.

5 years old

Little Kaylee,

You are 5 years old today! 5 seems like a significant age because you are officially school age! Although I miss carrying you around on my hip, your need to always hold my hand (although you still hold my hand) and witnessing all the first milestones for the baby book I am so enjoying this childhood phase. I feel like a broken record writing these, every year I seem to like your age and motherhood more.

Once upon a time you were my shadow, a mold of myself. Almost everything I liked to do you did too. As you get older you are finding your own interests and they don't always align with mine. My gardening buddy now loves eating from the garden, but not so much in helping sow seeds or tend to the plants. To my slight disgust and extreme pride you have decided that bugs are much more love worthy than plants. Now many children love bugs, but I am not so sure that many children love bugs like you! While I work in the garden you find bugs and you love on them in a way I will never fully understand. You carry them, name them, sing to them, love on them. And when I accidentally stepped on a grasshopper in our yard (which was a happy accident in my opinion given they can be very destructive to the garden) you cried real tears for that bug and you found it especially upsetting because the bug "wasn't even that old." When bugs find their way into our house regardless the type: crane fly, spider, house fly, you claim it as your pet and love on it until mommy or daddy can secretly release (or mush) it.

You have your own sense of fashion and a strong desire to follow these fashion rules which consists mainly of pajamas and non-brushed hair which means you haven't changed much since birth. Your one and only accessory that is an everyday must for you is hair bands around your wrist. I am not sure when or how this started, but I love that your fashion is practical and anytime I need to put my hair up I know where to find a hair band.

I feel so incredibly grateful I was able to be your mother! When I tell you that I am the luckiest mother in the whole world you always respond, "all mother's feel that way!" And maybe all moms do feel that way, but regardless I will go on believing whole heartedly that I truly am the absolute luckiest mother in the world to have the honor of watching you grow and spend my life with you!

Love,
Mom

Preschool Graduation

Thursday June 1st was Kaylee's last day of preschool. I have so many mixed feeling about this very short chapter in her life ending. She loved preschool and made a lot of growth which was fun to watch as her parent. She made her first self chosen best friend (who also happened to be the teacher's daughter). She was at a play based school and spent almost 90% of her free choice time in the art room being creative, which was exactly what I wanted for her- the freedom to follow her passion. Throughout the year we watched her become more independent and social and she loved her school experience. I know she is going to miss preschool a lot!

Kaylee was at a parent participation preschool and I was also the class parent which meant I was there a lot! I made so many friends and felt that so many people at the school became like family. Not only did I befriend other parents, I watched all the kids grow over the span of the year and I can tell you all of their favorite colors, which snacks they liked, their favorite preschool activity, and all about their siblings and pets. I bonded with so many of the kids and I will miss them a lot! Although I will admit those 2.5 hour preschool volunteer days (twice a month) sure did wear me out! My mind and soul will miss my volunteer days, but my body may be a little excited for a break! Oh, and getting away fro preschool germs sounds rather nice, this winter (post-Christmas) was a doozy for sickness!

However, there is a part of me that is excited to have my baby to myself again! Summer means more time to be with my girl before she has to go to kindergarten five days a week (sob!). It also means more time for swimming, gardening together, and trying local museums and playdates.

These little ones grow up so very fast and I know that before long I will be writing a post about her first day of kindergarten and this last summer together before "real" school will be a distant memory. I am excited I am here to witness it all and can't wait to see what next year brings for us.

*Since I forgot to update, we finally got called by our first choice school and we got in! Whew, that was a stressful process, but we are guaranteed a spot every year now until she graduates from elementary school.

Whaaaat??

After three consecutive colds (after a winter of a million viruses) and a fun vacation that ended up leaving me more sleep deprived than a mother of a newborn I finally gave in and called clinic for meds. All the signs of infection were there: night cough, extra reactive airways, way too much mucus for one person to handle. My doctor wanted me to come in for PFTs before prescribing any antibiotics and so the weekend felt very long in the worst way possible.

The past several years I find clinic to be absolutely deflating. As a CFer I am the teacher's pet. I go to all my appointments, I do all my treatments (like seriously, I never miss mostly because if I do I am miserable and it just isn't worth it), I take all my pills 99% of the time (those dang vitamins are the ones that trip me up), I do everything they ask of me and yet I still have really horrible pfts that never seem to improve.

The frustrating aspect is that I often feel like clinic gets the worst of me. The last few times I went to clinic I was just getting over or just starting a cold. Of course, they also get me when I am sick and desperate for medication. The times I feel amazing and everything seems to be going well? Nope, never have a clinic appointment scheduled then. And so sometimes I feel like clinic has a skewed view of my health and here was just another "sick" pft to add to my list of subpar pfts.

When my respiratory therapist showed up, I was not all that excited to see him. He was in a rush and he wasn't his usual talkative self and I wasn't even able to check out my score before he pushed print on the pft machine, handed me the paper and left.

And guess what? Despite feeling bad, my pfts were up! What?! The last several clinics my pfts have gone up 1% each visit. Okay, I know, I know 1% is not clinically significant, but let me tell you something, it is significant to me!! Do you want to know why? My goal in life is to get back to 40% lung function (or as close to it as possible). When I went though a rough patch I fell to the 20s and even though I rebounded (and fell and rebounded a few times) I got stuck at 31% for a very long time. I tried everything to get past 31% and nothing worked, nothing!! Somehow the last few appointments, despite feeling bad, I have been creeping closer and closer to my goal. 31%, 32%, 33%, and today I was 34% even though I was coming in desperate for medication!! See how creeping up 1% at a time without sliding back down can be significant?

Maybe after this tune up I can gain another percentage point or two? Baby steps... baby steps...

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

---AND---

 

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)!

Pharmacy Overload

Can we just talk about pharmacies for a minute? Now you all know how much I hate Accredo, but this is not that kind of complaint. This is a vent about how calling pharmacies seems to be like a mini part time job.

My insurance allows me to get most of my antibiotics through Walgreens Specialty Pharmacy. I have had really positive experiences with them and have absolutely nothing to complain about as far as the pharmacy itself. My only complaint is that I get 6 meds one time of month and then a few weeks later I get hypertonic saline from them because they are on different schedules of when I can refill. This means I am in contact with the pharmacy twice a month. Haingto make two calls a month to get all the medication we need to survive isn't really worthy of complaint except I don't get all of my meds through Walgreens.

My insurance requires me to use Accredo to fill Orkambi. It infuriates me because in the past I was allowed to use Walgreens (when I had different insurance) so I know they CAN provide it, but due to rules with my insurance I can't use anyone, but Accredo. So once a month I am calling them for Orkambi. Which as many of you know can turn into 12 calls a month to get my Orkambi, but that I another story entirely!

If having two pharmacies wasn't enough, I have to use a completely different pharmacy, Foundation Care, for Cayston which I take every other month! So every month I have two different pharmacies to call with a minimum of three calls. And every other month I have another pharmacy to call in order to get my inhaled antibiotics. It can all get very confusing and I have to keep schedules in my phone to know when to call which pharmacy for which medication! And that, my friends, is what I am complaining about. Is seems a little too complicated for a group of people that already have very complicated lives!

Now that I have vented about my pharmacy issue, I have to admit that despite how many pharmacies I am required to use I am grateful that all my meds are delivered to my door. I do not miss the days of going into the pharmacy and walking out with a grocery cart worth of medication! I would rather people not know I need 9 medications to keep me alive (including half a dozen bottles of enzymes) every month!

Duck Days

Our little home sits a few blocks from a canal that comes off of a major river. During the blistering hot summer months, you will find us splashing on the beaches of this river almost weekly, but as summer turns into it's cooler cousin fall, the river starts to fade from our thoughts. And there the river lies dormant from our minds, until early spring.

Late February the geese signal the turning of the seasons with their return home. They fill their skies with their loud welcome home calls and their majestic formations. Around this same time the canal and river ducks (mallards, mostly) can be seen wandering around he neighborhood. The reason for this behavior is unknown to me, except that I have heard rumors the females often look for safe havens in people's yards to lay their eggs. And these ducks, who have lived their whole lives in a quiet part of the city, are very much aware of the food that is stored inside the homes in the neighborhood.

Around March we often can hear small groups of mallards quacking at our front door. Upon hearing the quacking, Kaylee fills with delight while she shouts, "Get the bread!" I, just as excited as she is, dutifully follow orders. We crack open the door to find a small gathering of ducks waiting on our front stoop. They continue to come several times throughout the month, happily gobbling up bits of bread before moving along to find bugs in our bushes.

And then as suddenly as they show up, our porch is quiet. We no longer find ducks following us to the mailbox or waiting outside our door, calling out to us to see if we are home. The absence of ducks lets us know, that the next phase of spring is upon us.

Last week, Kaylee and I were riding our bikes along the canal when she let out a gasp that was so loud, I was certain something horrible had happened. She instantly jumped off her bike and ran towards the canal, "Look mom!! Babies!!" Sure enough there were 13(!!) ducklings swimming along the canal behind their mother. Our first duckling sighting of the year. For the next few months we will walk along the canal to find it spotted with fuzzy little ducklings following their mothers along the water.

Next March I am sure some of these ducklings, all grown up, will be quacking at our front door looking for some scraps of bread and we will be eagerly awaiting their visit.

Weeks Or Months

So remember my last post when I was worried about swimming after being sick and taking a break? Yeah, well I shouldn't have worried one bit. And it is not because I am some superstar that can be sick for 2.5 weeks and magically jump back in the pool and do as many laps as I did before getting sick. Nope, it is more like I showed up to find that the gym has a major plumbing issue (or at least that is what I thought was going on) and not only is the pool closed, but the spa, all the bathrooms, and showers are closed! The worst part is they won't re-open for another 3 weeks to 6 months!!

I can either drive 20 minutes to the next closest gym that is within the chain of my original gym to swim or I can try to do something that doesn't require the pool. Considering how early I need to be home from the gym to do my mom duties commuting 20 minutes one way is out of the question. I am so comfortable swimming and I love swimming in a way that I have never liked any other exercise. I feel like when I swim I am in shape and healthy because I am good at it. However, when I try to run on the treadmill or do other equipment I feel old and sick and broken. But I know my lungs need exercise to function well and at this point I need to do something, anything. So tomorrow morning I will hang up my bathing suit, lace up my sneakers and give the treadmill a shot. Eek, lets hope the plumbing is fixed in the next few weeks and not the next few months!!