Today is my birthday. I’m 26 years old today. It’s a day filled with “Happy Wishes” and “I Hope you have a…” A day filled with cards, gifts, and phone calls from loved ones.
It’s also a day spent in excruciating pain, a day spent turning off alarms reminding me of meds to be taken and a day spent preventing fainting and fierce violent spasms.
Today is also 2 years to the day since this disease came back into my life with a vengeance. You see, I have a rare neurological disease that effects every part of my body. Not only can it spread through out your body but it can spread internally.
This day has also marked 1 month since I have had my GJ peg tube placed and though it has been one of the hardest months in so happy to say I’m no longer malnourished. I have been fighting for my life and though at times I hate the tubes that keep me alive I’m so thankful that my body keeps fighting and the tubes and machines that have kept me alive.
I’m so thankful, even if it is not any easier today. But I’ve smiled with flowers sprinkled all over my room, some extra special phone calls cards and texts and a magical trip to the beach with some extra soft clothes picked out especially for today.
Today, I am reminded of all the people who fight and support me. Today, and everyday I fight for those moments because chronic pain doesn’t care that today’s my birthday or any day. But I won’t stop fighting or living.
Keep fighting on-
16 years with crps
2 years full body
5 months power port
1 month tube fed