By Andrea Eisenman
So many fears, where do I begin. Let’s start with my impending trip to Seattle from NYC. I like to travel but it gets complicated. How much room in my suitcase do I have to pack my myriad of machines and meds? And how much will I forget, despite my thorough list? I learned I had to put obvious things on my list like a hairbrush after I forgot that a few times. But when it is easily purchased at a drug store, no biggy. When it is my immune suppressants or a nebulizer, that is harder to replace.
I now have a lot more machinery to tote around when I leave home. I have my CPAP, my percussor and my inhalation machine and a facial steamer for my sinuses, plus my Neti pot for nasal lavage. These things become cumbersome and traveling light is not an option, I have to check my bag. So, planning is key for several days prior to take off. I am in that phase now. Packing it all. I bring enough meds for twice my travel time. My last trip to Seattle happened during 9/11. I could not fly home for a week. Luckily, I had an extra 10 days of medications to cover me.
My dad asked if I was up to the flight, it is a longer one than I have taken in many years. My answer is, I don’t know. I am fearful as I know I have lymphedema and even though I wear compression tights when I fly, it is less than comfy and I will swell in my upper body. I do have a compression machine for upper body swelling but it is way too big to bring. Will I be ok not using it for a few days? I am hoping the answer is yes. But because I do not know these things for certain, I have anxiety. And I worry I might get sick either from the flight or anytime during my trip. I do wear a mask in flight and try to stay as hydrated as possible in order to keep well. And of course, I will wipe down the area near my seat with cleaning wipes.
But in order to live a life, I have to take some risks. I had wanted to go to Seattle for a few years. It is therapeutic to get away once in a while and I had not traveled too far from home while my mom was alive. I wanted to be near enough if she needed me. I no longer have that worry. And maybe I used that as an excuse so I am now pushing myself to go on this trip. I know I can be resourceful and my doctors are only a phone call away if I get sick. There is a great CF center there and my friend is sensitive to my CF needs. When we were in college together she gave my CPT when I let her.
I find that when I push myself beyond my fears, I feel triumphant and am happy that I conquered them. Sometimes one has to get out of their comfort zone, even if it means wearing horribly tight pantyhose for six hours on a flight! I know it will be worth it and I can bond with my friend. I will feel like I accomplished something worthwhile. Maybe my next trip will be to Europe.
By Ella Balasa
Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:
Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.
I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.
I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.
Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.
Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.
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