30 Days of PH : Life in a Wheelie

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by Jen Cueva |

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Day 4 of 30 Days of PH⁣⠀ Topic: Life in my Wheelie⁣⠀ ⁣⠀ This is Catalina’s @catalovesjuan story⁣⠀ ⁣⠀ I was diagnosed with PH in 2005. It wasn't long, sometime in 2006 that I started to use my first power wheelchair, aka my Wheelie. I remember that I I checked into one after my sister suggested I may benefit. She had noticed my increase in shortness of breath and I was only able to walk short distances. At first, I had told her no, but as time went on, I was unable to do more. I had issues walking from my bathroom to my living room.⁣⠀ ⁣⠀ At first, I started using my wheelie at home. It was weird to maneuver at first, but I soon got the hang of it. I refused to go outside because I was embarrassed. I did not want my neighbors and friends seeing me. That changed, as I got tired of being cooped up inside. I decided to try to go to the market on my wheelie. It felt so good for me to get out. I soon started going all over the place.⁣⠀ One day I was out and met a lady at the bus stop. we chit-chatted.I told her that I did not know the times of the bus because I did not use public transportation. She then told me about how the bus can lower a ramp to ride up on and that was a huge help for me. This changed me forever, I soon learned that the bus could take me anywhere I wanted to go.⁣⠀ ⁣⠀ This was good news too was my husband did not have to take off of work to take me to doctor appointments. Now, sometimes it's not all that fun because in order to get to my local Dr's office or places I need to take 3 buses one-way. What would usually take me 20 minutes to go can now take me almost 2 hours. On those days I get home really tired and have to rest for a few days.⁣⠀ ⁣⠀ I always have to go prepared. I take my water bottle, umbrella, sunglasses,back up medicine pump plus med, and money for my bus pass. Though I love my independence, sometimes I wish I wasn't in a wheelie because even though I am in one I still get short of breath doing things like cooking, washing dishes or simple chores like sweeping and mopping. I get that look from those that don't understand that I still get exhausted.⁣⠀ ⁣⠀ Just because I don't look sick, doesn’t mean that I am not.⁣⠀ #lifeinawheelie

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Jen Cueva Jen Cueva lives in San Diego, California, with her husband and daughter. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!

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30DaysofPH, awareness, lifeinawheelie

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