Friday, August 18, 2017

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!

Saturday, August 12, 2017

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!

Friday, August 4, 2017

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.

Wednesday, August 2, 2017


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!

Thursday, July 27, 2017

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 July

Tuesday, July 25, 2017

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.

Friday, July 21, 2017

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.