One of the inevitable consequences of being chronically ill is that it forces you to readjust your life. No part of your life is left untouched. These past few weeks have been full of hard decisions. I had to leave my position on the show choir stage crew and stop going to choir at the high school. I am no longer a student at the high school in any way. That was one of the last pieces of the old me to go, but heres why that doesn’t upset me. Since I got “sick” I felt a pressure to do the same things I used to, and be the same person that I had been with my friends. Luckily I have some amazing friends who never expected that of me, but part of me did. As my joints declined I needed walking aids such as my forearm crutch. I was also frequently in braces or splints. I felt self conscious because people at school didn’t know about my health problems, they just knew the happy active teen I used to be. This left me feeling pressure to push myself to do those activities and not to use the things that I really needed. Now I get to be who I am, a new person you could say. I feel like a weight has just been lifted off my shoulders, and I don’t have to care what other people think.

Not all changes are bad, lots of good things are happening too. I got my ankle braces fitted and I love them! They give me so much more stability (is this what strong legs feel like?). My PICC line has been a huge help in making me feel better. I am getting consistent fluids without all the IV pokes (always a plus!). Some thing that isn’t related to my health that I am excited about is my sign language class. I am learning so much and I have never enjoyed learning a new language as much as ASL. It has me thinking about a possible career option as an interpreter. I could spend hours trying to transfer everything I want to say into signs.

I have a few appointments coming up next week. I’m having more tests run on my stomach to check up on my Gastroparesis. We were lucky enough to get into a cancellation appointment with a new neurologist that specializes in Dysautonomia next week. Theres a very good possibility that with these appointments more life changes may come my way…but thats ok, I’m ready.

 

“I forget what is behind, and I struggle for what is ahead.” ~Philippians 3:13~

This year I choose one word that was going to be the theme of my year. That word was hope. The reason I choose this word is because hope is one of the most important things when fighting an illness. When the pain is bad and you feel absolutely miserable, if you lose hope, the situation crushes you and it feels like a battle that you will never be able to win. But if you have hope, even just a little bit, it gives you something to focus on. It gets you through. If you don’t hope then you give up, you basically surrender to your pain and accept that you’re never going to get better. But if you can just find one thing that is going well or one thing that there is potential to improve, you begin to focus on that and not the things you can’t control. That’s when I throw myself into whatever it is that I have chosen to have hope about and I do my best to make it happen. Sometimes it does and sometimes it doesn’t. When it does it is the greatest feeling, but even when it doesn’t I know that I have spent time thinking about positive things rather than feeling defeated. Then I move onto something else, I always do.

This year I have many things to be hopeful about. I got a PICC line so I could get infusions twice a week without constant needle pokes. I am getting ankle braces so I can work harder at getting my body stronger. At some point this year I will be getting a service dog to help me with the stairs and other mobility related tasks.

While all of those things bring hope to me, this year I get to write this blog and hopefully bring hope to others. Which makes me so happy. God gave me these struggles and I’m determined to use them to bring other people hope and point them to Jesus who is where our hope can be found.

~Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31~