Today is my thirty eighth birthday and yeah I am supposed to write an all happy post about how great it is to be thirty eight and be positive. If that is what you are wanting, then I will be disappointing you.
I watched a movie starring Gordon Levitt Jr. called 50/50 and I happened to be in the same position is character Adam is in. The only difference is I do not have cancer, my illness is a Vasculitis disease and I have to go through treatments, surgeries, and fall outs from medication just like Adam does in the story. The scene that hit me the hardest was towards the end of the movie when he is facing a dangerous surgery, the last resort to his cancer and he could become crippled and he is facing death head on. And his friend is drunk and cannot drive and Adam has to drive him and he just loses control of his emotions. He calls his therapist Kathryn and says “I am so fucking tired of being sick”. I cried like a baby, because that is how I feel a lot of the time. I am tired of being sick. I am tired of having to take medications that have fall out such as acid reflux and throw up episodes. I am tired of watching what I have to eat because the medication predisone can raise my blood sugars and then having the bloat face from this same medication. Having my weight chance from day to day from 10 to 25 pounds no matter how much I watch what I am eating it fluctuates like that. I am tired of living with a trach that I have to make sure I have to clean out every three to four hours just so that I can breathe alright. I am tired of having to take the trach out and reinserting it back in every week just so that it doesn’t get clogged up. I am tired of having the cannula get stuck and having to use the stupid wrench in order to get it out. I am tired of having to suction myself so that I don’t have clogs in my trach. I am tired of having surgeries that only mask the problem and doesn’t fix the issue. I am tired of having biopsies done, cutting pieces off of me and not truly understand why my body is attacking me. I am especially tired of not being able to move, running, biking, hiking, playing, and just being able to BREATHE. Reading this paragraph, I feel like I am nothing more than just a big fat baby whining about how awful her life is. I hate feeling that way. Thankfully, I do not feel this way daily.
Some days I am dead tired, I feel like I could sleep the entire day away. Sometimes when my care provider is here for his two in a half hours I sleep the entire time he is doing his job. Then there are days when my energy is high and I buzz around like a bee.
Now I am ready to write about my birthday and what I will be doing. I am going to my home town of Longview Washington to spend 2 days with family and friends. I am doing a radio show on the Boomer Plus Radio Show talking about Vasculitis awareness month and what it is like to live with my illness. You can hear me talk with my trach and about my journey on Tuesday May 22nd at 3 PM Pacific Standard Time zone.
Now it is time for me to pack for my two days out of town.