Fabric, pins, and sneezes

Posted by: 
Rima Manomaitis
Sewing and crafting has always been my favorite thing to do to. I get to be creative when I am nebulizng. When I am need of a mental break it gives me something else to focus on other than exercise and therapy. In the first picture I am setting up my Machine to finish a leather corset.
When I was young I would usually start my creation with a sketch. Then I would label the sketch with measurements for certain details like where a pocket or a button will be and what size I might want it. Then I would check my storage bin of fabric and hope I have something that could work for the design. If I didn’t have what I wanted I sometimes shopped around the house for old clothes, curtains, or sheets my mom might not want or…. notice is missing. Then I might make a pattern depending on how complicated it is. I could spend hours at my machine, covered in strings and scraps. This is one of the biggest reason my Nebulizer mouth piece had deep teeth marks. I would hold it in my teeth so my hands could work. Often I was so busy I would forget to eat. I eventually started preparing meals around my machine that I could grab and keep going. When I finished a project it gave me such joy and clean up never felt like a chore. The last picture is one of my satin Kimono dress.
 It wasn’t until I had a bout of reoccurring sinus infections that my doctor asked me about my hobby and asked if I had a filter in the room. At the time I was diligent about keeping dust and allergens down with cleaning and keep my space aerated. I had not considered having a filter and how the fibers in the materials I was using could be affecting my air quality. My care team recommended a few different brands that my insurance covered. I quickly saw how the small machine was not adequate to handle all the crafting, pet hair, regular home dust, etc. However, there was definitely a noticeable improvement in the room but I needed something stronger. In researching on my own it was overwhelming. I didn’t create anything for weeks. Comparing specifications, models, filter types, UV, carbon, certifications. AHHHHH I was so overwhelmed and frustrated. More often than not the durable medical equipment providers would offer the machine but not replacement filters or parts or vice versa. Eventually there was one that fit perfectly in my space and was affordable with a subscription plan on replacement parts. It was not covered under my insurance but this was a much needed investment in my health that is not negotiable to me.
The experience has changed my shopping habits for every home appliance that has any type of filter like dehumidifiers, air conditioners, vacuums, even nebulizers. I have a little fun driving my family crazy anytime we have to replace or upgrade or get new equipment. We must shop around and compare product details. Never a grab and go situation. I once had my husband roll and tape up the area rug until I found the perfect steamer to clean it. We moved to a place with hardwood floors and my steamer became a coat rack. It eventually found a new carpeted home. Seeing HEPA
on a label is not enough anymore. Brand loyalty is not a thing to me when it comes to my air quality. If there is something affordable, of better quality, that will allow me to have peace of mind in one of my most cherished spaces, I am all for it.

Help Others Live STRONGER and LONGER-


Annette Perry is a designer, public servant, and author living with CF
in New York. Having an active lifestyle and eating healthy is a big part
of her therapy. She practices mixed martial arts and loves to
experiment with food. Her personal motto is “My kitchen is my local
clinic”. She is a community advocate and has become very engaged
with the CF foundation through the pandemic, volunteering for work
groups, research studies, and participating in STROLO U class courses.

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