Greetings to everyone!
I am Janeil. I live in the beautiful city of Cleveland, Ohio with my husband, Peter and fuzzy-bellied cat, Sybil. I have had 26 birthdays. I enjoy television, match-making, taste-testing food trucks, and the finer things in life: fresh flowers, fresh babies, candy, Christmas, funnel cakes, freckled cheeks and sweet moments. I am an ENFP (Myers-Briggs lover) and a crybaby. I live with cystic fibrosis.
This blog will be mostly about the highs and lows of living with cystic fibrosis (CF) and CF related diabetes (CFRD).
The Lord has challenged me both physically and mentally, and I know that He wants me to use my illness for His will. While I may curse and be thankful for CF in the same breath, I believe in my heart that CF is my battle to endure while here on this earth. I try to live with a positive attitude and a grateful heart everyday. However, it is difficult to be an adult- to be married, to work, to better myself, and to plan for the future- all while managing a complex and time-consuming chronic disease with no guarantees. I fail more than I succeed, but I plan to enjoy every single day I wake up with breath.
This blog will be real and honest (with a bit of sun).
In high school, I won “Most Optimistic,” and optimism has always been my primary defense mechanism. I believe I have used optimism to shield people I care about (including myself) from the reality and pain of CF. Because of this, the majority of the people I surround myself with have little understanding of what having CF actually looks like. They see the sugar-coated, sunny explanation that I allow them to see, but not the dark, isolating side. I have come to realize this way of living isn’t fair to either party and hopefully, this blog can be a platform where I share my life and experiences openly and honestly.
Being an ENFP, crybaby, and highly sensitive person makes me emotional, too emotional sometimes, and there may be moments where I write about genuinely difficult things (I may also cry during dog food commercials but that’s for another time and place). I do not want pity, instead I desire support, love and prayers when needed most. My posts are my personal views and may not be shared by all, but I hope it will be helpful or relatable to some.
This blog is open to comments, questions, and experiences from those with CF or those without. I would love to hear from anyone remotely interested in life, cystic fibrosis, or the marriage of both.
Thank you for caring about me, my disease, my thoughts and supporting the need for CF awareness.
Salty Girl Out,
11 thoughts on “About”
Proud of you! Ps love the pics
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Very encouraging… warrior thanks for sharing
Hi Janeil, you don’t know me but I use to work with Jessica and I came across your blog from her Facebook post. I have written and rewritten this post to you hoping it sounds right. Bottom line is thank you for sharing such personal information. I have a daughter with medical needs, she’s non-verbal and how I wish I knew what goes through her mind with her medical procedures. You’re amazing and an inspiration, thank you and God bless.
Thanks for reading Jen! I am glad you are finding it helpful. I’ll be thinking of your daughter.
Hi Janeil, We have only met one time but you are my son’s downstairs neighbor. Thank you for your kindness to him. I wanted you to know that your blog is inspiring and that I am going to pray for you every day. God bless you.
Leslee, Thanks for reading! I hope Graham liked his halloween treats and I appreciate all the singing he does for us 😉 ! Thank you for being a prayer warrior for me as well!
Hi there! I found out about your blog a little while ago, and I’ve been keeping up with it ever since. I’m 19 years old (almost 20!) and I have CF. I’ve been living at home and attending college, but in the fall I’ll be going away to school somewhere. I’m not sure if you went away to college, but if you did I’d be interested in hearing any tips you might have to offer. I’m very nervous about it because I actually tried it once before and my health became so bad that I had to come home after one semester. I’d love to hear back from you! 🙂
Thanks for commenting and following! I did go away to college for both undergrad and grad school. I went away to CWRU in Cleveland which is about 30 minutes from my hometown. CWRU also shares a campus with my hospital and doctor offices which made it easier to go to appointments and be admitted when I needed to. I don’t know if you have chosen a school further than that, but I’m my experience it was best to stay close enough that I could go home on the weekends if I wasn’t feeling well but far enough that I couldn’t commute. I lived in the dorms freshman year, my sorority house for 2.5 years, and then an apartment after. I think just staying organized with your meds and having a space devoted to your vest/treatments helps to stay compliant.It also helps to have a single room so that you can rest/do treatments/etc without disturbing anyone. I used pill boxes to sort my weekly pills and honestly just tried to make my treatments a priority. I wasn’t always so responsible with them too, so I know it’s hard to time manage. I did decline a bit in college and barely made it through some semesters. It is not easy but keep trying! Do you do home IVs ever? I did A LOT of “dorm IVs” in college so that I could stay in school but get the care I needed. It’s all about knowing when to ask for help as well. Don’t be afraid to reach out to the disability office and get accommodations for school work and attendance if you need. If you want to talk any further here is my email (firstname.lastname@example.org) and we can chat in more detail! Feel free to email me, Ginny!
Hello, I am Bekka. I’m 24 , but I do not have CF. I have chronic bronchitis (never smoked) , chronic asthma, and a primary subclass immune deficiency (ro name a few). I love your strength & courage! I am so glad you also belong to the Lord, and share your witness of Him with others! I am also a blogger! My blog is chronicbeauty.wwebly.com . I do have a question though, is the “flower lungs” name only for CFers, or can it apply to other lung diseases too??
Hi Janeil! I’m 27 years old and I also have Cystic Fibrosis. I was wondering how you met your husband? How did you navigate dating and CF and now marriage and CF?
Hi Christina! Nice to meet you! I met my husband in high school actually. We went to the same school and had one class together but we’re not friends or together. I actually had a crush on him but he was in a relationship. Fast forward 4 years, we both went to separate colleges but they shared a campus and we spotted each other at a karaoke bar on campus one night and started chatting. As the say, the rest is history.
I got some really great advice from my CF doctor about dating once: be honest with your partner but also share the details about CF slowly and in small doses. For example, if your date notices you take enzymes, just explain you don’t digest your food and need enzymes because you have CF. Give information but don’t feel the need to explain every little detail right away. With time, all their questions about CF will be answered as the relationship grows to be more serious. I found this advice helpful. Also, just talking about CF casually as something you deal with as a part of your day helps others see that it doesn’t always have to be scary/sad.
Obviously, when my husband and I got to the point where we were seriously dating and thought we had a future together, we had more serious talks about the influence of CF on our lives as a couple. I think it’s important to have those difficult discussions as well. I was honest with my husband about what my future would look like and what that meant for him in terms of work, children, retirement, etc. He has always been supportive and gracious about my CF in our relationship. He even has said it has made him love me more because it makes me a special person, haha. Now that we are married, our roles (and relationship) are different than most couples our age. He does a lot of the house cleaning so that I don’t have to. He works full time, and I work part time and am on disability so I have more time to care for myself. We are strict with our finances and know that “plans” may need to changed last minute due to CF. We don’t go out as much as our friends since I’m low on energy some weekends. We planned for a long time to get pregnant while understanding the risks. We have had to navigate some difficult situations because of CF but it has always worked out and we enjoy being married immensely! Things are different, sometimes more serious than other newlywed relationship but still very fun. I hope that answered your questions and if you ever need to just chat about it, feel free to reach out again. I also talked a little more about dating/marriage and CF on a podcast I did (the link is in one of my blog posts) if you are interested. Sending love, Janeil