Our community

There are people in the community who stand as pillars for all of us. 

They are the ones who have led the way in health and other obstacles that we, as people living with cystic fibrosis and transplant know are in our future. They conquered it showing us what is possible in the future that lies before us. Showing us that strength in our weakest moments is possible while also lending their knowledge and support to anyone who is walking in those same shoes. Giving us hope for a future that isn’t perfect by no means but better then the hell we see in our day to day struggles. 

They become our inspiration and that story where we say “but so and so did it” and I can do it too. They become our hero’s and the face of something better through the struggles and tragedies. 

And then as quickly and quietly as they become our inspiration, they become our angels leaving us heartbroken trying to understand so many questions that we will never understand. Showing us that there is beauty in the fight and winning isn’t always old age but being able to lay surrounded by the ones we love who have given us the most support and simply being loved in our final moments. Taking our final breathes…the ones we struggled all our lives for to simply leave this world and move along to the next. Being greeted by all who went before us. Friends and family gathered as we enter the life we only dreamed about, living the life of true bliss. 

These are the people who make this community what it is. Something we never asked for but here we are together deep in the midst of some of our hardest battles 

Angels among us. 

It’s been 5 years…

It’s been 5 years since I walked outta the hospital. Here are 5 things I have learned 

 

  1- The physical things I have endured to get to this point in my life is sometimes mind blowing.Its amazing what the body can handle. Even though I see the scars and they are a constant reminder of the resilience and strength it has taken to get me where I am today, nothing compare to the scars that you can’t see. The survivors guilt that hangs heavy on my heart as I remember the people who have gone before me and even watching the ones who are currently struggling to find normalcy. It weighs heavy on me. My donor, someone i don’t know who is constantly on my mind and how I have this responsibility to live life for them and honor them. 

  2 -Physical changes are hard. After 5 years I still look at myself and sometimes don’t recognize the girl looking back at me. I’m proud of what my body has handled but it’s visible to my eyes. The puffy cheeks. The bruises that pop up randomly. The weight that I have gained is sometimes hard and if I’m being honest it’s hard to be crucial of my physical appearance when I’m just lucky to be alive. But I try to embrace it but it’s not easy to look like someone completely different. 

 3- being naïve. I was under the impression that when I got my miracle, things would be so very different and that I would have some normalcy and start to have somewhat of a normal life. My life is filled with doctor appointments for so many teams. Transplant, cystic fibrosis, liver, woman’s health, endocrinology, mental health, ENT. Don’t forget about the testing. Blood tests, X-rays,ct scans, mri’s and pulmonary functions. The list only gets bigger and the further out we are it seems like problems just pop up.  

  4- support. As lucky as I am to have the support I have. It sometimes feels like it’s too much of a burden to everyone. The appointments the tests the procedures and the need for support and reassurance. I don’t drive so I depend on others to get me anywhere and everywhere. It’s amazing the people who step up and show support in little ways and big ways. The check ins and the messages mean so much. But it still hurts when I think of the people who said they would be there for me and for my family but they aren’t there. They disappeared and I know it’s for the best and whatever reason it is, I don’t hold it against them…but the hurt is sometimes so powerful and overwhelming. 

  5- being so fragile. Medically and physically and even sometimes I find myself having a hard time with the emotions. I get angry and then sad. I’m upset with the fact I’m 38 and struggling to find a path for myself because I have no choice to just be a patient and take care of myself. It’s a full time job and there are no days off. No one to cover for me or give me a break. It’s 100% my responsibility. It’s heavy and somedays I can’t carry it all. And that makes me feel like a failure. I’m not a weak individual, or at least not in my eyes but there are a lot of things I simply can’t do. And in all honesty even though it’s silly things it’s hard to wrap my mind around. 

The thing is, I got my miracle. And when I say I’m very lucky it’s an understatement. I’m fortunate to be where I am and it’s not a bad life by no means. It’s a great and beautiful life and I’m blessed to the extreme with the support and love and everything. So please don’t take the above as me complaining. It’s me being honest about my situation. 

Here are 5 quick things that I have learned that are more on the positive side 

1. Love is powerful and will help in every situation. 
2. The compassion of good doctors and nurses make things so much easier and I appreciate them so much.
3. When you have a great support system and team, you can handle anything that gets thrown your way
4. The connection you have with someone who has walked the same path is something that nobody will understand unless they to are on the same path. 
5. Even on the darkest days there is light, sometimes you just have to look for it. 

I’ll end my post by letting you know 5 years go by fast and even now the memories are still strong and present in my mind, but now I seem to have stronger feelings of happiness and not so much trauma. 

Friends, somedays are hard and somedays are easy and then some days are in between. But everyday is a good day in some way. I’m so blessed to be here and write to you all. I send you my love 

 

Into 2025 with a bang

Maybe this wasn’t a year where everything and everyone came out on top, but we survived. Some did better than others but that’s okay. We made it 

I’m learning as I get older and life progresses and everyone ages, surviving is a great accomplishment. And just for that I’m grateful. 

Like every year and every year before it, it’s been a roller coaster of a year. Some of the highest highs and lowest lows. But through it all we have remained together continuing to concur every single obstacle, some put their head down and some swear to get through it. But together hand in hand and leaning on each other we made it. 

In 2025 I have hope that things will level out and we will ride the wave of normalcy but honestly it’s been so long I don’t know what normal looks like or even feels like. But that’s okay, even through it all I find happiness in the little things and the small moments where I see love surrounding myself and everyone else who I hold dear to my heart. I see others thrive and flourish and it brings me a happiness that fills my heart almost as if we did it together. 

I have never endured my hardest battles and hard days by myself. I’m grateful for that simple sentence. Those who stand next to me are never silent, always saying into the world what sometimes I just can’t find the strength to say. To speak words of encouragement or positivity when I fail to see the bright side. Speaking of my strengths and abilities when I sometimes forget everything I’m capable of. It’s easy to look down at the ground and put my head down with everything life throws at me, constantly humbling me reminding me that my life has sometimes been an uphill battle to just simply breathe and exist among my peers and my loved ones. 

This year, there has been good moments that I hold on to. Good memories that fill my head at night when the depression creeps in trying to steal my happiness. Those moments are like a light that shines bright defeating the evil that lurks in the corners of my brain. 

Along with the memories are the bonds and relationships that I have strengthened this year. I feel like they came in my life when it was needed. Not because I was sad or needed the support but possibly because I needed to shift my thoughts and the way I perceived some of my biggest struggles. I’m a very fortunate person in many aspects of my beautiful life. 

Yes,despite so much I have a beautiful life. The love I receive is the kind of love that makes you a different person. The kind of person whose cup is so full that I have the pleasure of filling others cups for the simple reason that I can and it brings me happiness. 

Happiness. That’s what I wish for you in 2025