Maria is sharing her story of hope and resilience as part of our “Thriving with LAM” series for Worldwide LAM Awareness Month 2020. Lymphangioleiomyomatosis (LAM) is a rare lung disease without a cure.
Maria was diagnosed in 2012. We’re grateful to her for telling her story and offering her advice for living and thriving with LAM.
My name is Maria Teniente. I am 65 years old and I stubbornly plan to outlive LAM.
Ironically, I was diagnosed on April Fools day. It was on April 1, 2013 and one thing I remember, clearly, was that I was alone. No bueno.
On that day, I only remember hearing two things: “…only live about ten more years” and “Do you have a written will?” And on that day, I remember saying only one thing: “I can’t die, I’m a Nana!”
Now, you know what has kept me alive and living a positive LAM life. I have purpose. I’m a Nana. I’m sticking around for a long time to create unforgettable, “branded in your brain” memories with my grandchildren and, especially, to collect on my payback of “Wait ‘til you have kids of your own!” (insert creepy laugh)
Every day, I wake up with the realization that I am fighting against time. Lifestyle changes and other personal accommodations remind me, each day, how real it is to live with LAM!
My plans after retirement did not include an oxygen machine, especially, because I have always been very active. I never thought that I would have to struggle with simple physical activities such as climbing stairs, tying my shoe laces, washing my hair or dancing. I never thought that the weather would play a big role in my life or how it would affect my breathing.
Sometimes, I feel as if I’m living someone else’s life or watching a sad movie on the Lifetime Channel. The strange thing is that my illness is “almost” a secret. These hardships are not enough to announce my illness to the world. It is an “invisible” illness.
Most of my friends don’t see me as ill. You know why? I still do me! I still am me! I still live my life to its fullest!
In order for me to create a positive LAM life, there were things that I needed to acknowledge and accept. I needed to know myself and my symptoms, well. Next, I needed to love myself, equally, on my “off days” and on my “good days”. Lastly, I needed to accept that, sometimes, “it’s just my turn to carry the cross!”.
On my off days, I spend the day trying to pinpoint what might be the cause of my symptoms. Many times, (especially, at the beginning) I’d be rushed to the hospital with pain in my lungs just to be sent home with an anti-acid…Yep, heartburn! I’ve learned, since then, that my heartburn feels much worse than regular heartburn because its close to my sensitive lungs.
Most of the time, it is something that I can handle at home, because I know my body, so well. If it’s just an off day, and I’ve had many, I just give myself permission to take the day off. I’ve spent many a day and night with my inhaler, my oxygen, my heating pad, my oximeter, etc and just veg.
On my good days, I’m off and running! On these days, I spend a lot of my time volunteering at dances for senior citizens (hush! I’m not a senior, I’m a junior!). My family owns and operates day dances that keep me busy about three days out of the week.
This volunteer time gives me a satisfying reason to get up in the morning and surround myself with these high spirited, fun-loving, beautiful people. These people mean the world to me and they bring me hope and joy. I want to be like them, when I grow up! It keeps me strong and humble to focus on other’s needs, before mine.
The rest of the week, I make myself available for my Nana time! I babysit my grandchildren, as much as needed. I have five grandchildren, in all. They are truly the reason I stay positive and healthy. No names mentioned, but that A.J. will keep you running a marathon!
One of the most positive and life-changing experiences that has come, from my having LAM, is that I’ve gained a more profound understanding of simple, everyday words, such as: courage, humility, empathy, fellowship, grit and sorrow.
Yes, the dictionary has the definition of these simple words (the word’s connotation) but it is only through sitting in the fire that you truly know the burn. So, living with LAM has given me a deeper understanding of these words, either because I’ve lived them, or I’ve seen them lived, right before my eyes!
So, what is positive about this experience? Though, some of these words came with much pain and grief and some came with, considerable, pride and triumph, this is life. I am honored and thankful to have experienced such a fulfilling and enlightening life lesson… LAM or not.
When a LAM sister shares her fear, frustration or if one of us feels like giving up, we often gather forces and support her because most of us, have “been there”! I read and re-read every single post from my fellow Lammies.
Their positive and encouraging words are so fulfilling to me, personally, that I’ve actually combined a list of their most inspiring recommendations and I keep it by my bedside…
- You are not alone
- Just keep swimming
- Don’t look down
- Hold our hand
- We are stronger together
- Keep your head up
- Never give up
- Dig deep
- Keep pushing
- I’ll be your shadow
- Embrace your inner warrior
- Surrender to God
- Turn another direction
- Too much to live for
I am a retired Early Childhood Educator. I served for 28 years as teacher aide, teacher, Gifted/Talented Specialist and Dyslexia Specialist. I now, own my own Educational Specialist business and train teachers, nationwide. I am also a proud Nana to five beautiful grandchildren.