It all started a few years ago when I started having joint pains. It was as random as can be and I was very taken back by it. The pain in my joints started in my knees and now I have pains in almost every joint.
The biggest pains I experience are felt in both knees, hips, and ankles. My body was just experiencing these horrible aches and I was unsure about it. Soon my wrists and fingers followed, and it hurt to do even the slightest things.
Developing cystic fibrosis-related arthritis
The doctor would tell me that many patients with cystic fibrosis develop CF-related arthritis. I never heard of that before.
My doctor soon gave me medication for it and I slowly began to feel a bit better - but not completely. The pain does not go away, but it becomes something you live with and become used to.
A year ago, my feet started to burn. Walking became agonizing; it felt as if my feet were on fire constantly and I had no relief at all. The doctor told me I had neuropathy now. It was shocking to be going through all this pain so suddenly and struggling to walk and function as I normally did.
Getting my walker
I was given a walker to aid me. Using a walker to move around is very humbling because you never really think about how important your joints and feet are until it is extremely painful to use them.
I have come a long way. I am happy to say that I use my walker every now and then when my pains flare up and I need it to support me, but I can walk farther now without it and I have it when I need it.
Cystic fibrosis is surprising in the little ways it impacts certain parts of your life. No one really sits and talks about the other symptoms or other ways cystic fibrosis affects the body, but I have spoken to other people with CF and have found that I am not the only one. One thing I appreciate is having a community where I can talk to others going through similar things as I am - and for that I am grateful.
Be proud of who you are
Compared to a few years ago, now I sleep with my walker by my side of the bed, so if I need it, it is right where I can reach it. My walker has become an especially important part of my care and mentally I have accepted that. While I was embarrassed to use it at first, now I am proud to use it because I need it.
I want others to know that cystic fibrosis is not just limited to my lungs, it is something that has affected my body as a whole. There are some of us who need to use walkers, canes, portable oxygens, and so on. Using medical devices for cystic fibrosis is okay when and if you need it. I just wanted to share this part of my life because my walker has helped me move around without struggling so much. If you need any device, use it without shame.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?