My Story

The quote above is from a Hillsong United Song. I went to their concert last night. I cried, I sang, I danced in my wheelchair. I needed this night of worship. I needed to be reminded who Jesus is.

It is Vasculitis month and Arthritis month. How fitting considering I have both of these chronic illnesses. It is hard to figure out what to write that doesn’t sound like whining or preaching or complaining about something. Most days I feel like dried soap on a car, but there are some good days too. How do I write a post that doesn’t come across as a complaint, a whine, or a preaching time for me? I have no idea. Not simple at all. I’m just going to tell you my story, how it started and where I am at this moment.

I have two chronic conditions. One that affects my trachea and one that affects my joints. It’s not fun. I deal with it with the help of Jesus and a ton of self-care techniques that I have experimented over the years. I’m not perfect. I have moments where I am cussing and then I have some peaceful moments too. It’s the norm for us spoonies.

I have a Vasculities disease called Wegener’s. There is a long name for it, but it is hard to spell and I can’t always remember it. I do remember Wegener’s. I have what is called Limited Wegener’s. This means it has only affected my trachea. The way it affects my trachea is by scar tissue that is at the base of my chest and the trachea. Currently, I go through a ton of throat surgeries trying to keep my airway open. It’s not fun, but it is better than it was at the beginning of this journey. I also go for infusion treatments every 6 months to help keep it under control. Rituximab also helps keep my RA at bay too.

I also have Gout and Rheumatoid Arthritis. I take medication and I go through chemo treatments to help me fight my Vasculitis and my Arthritis. It’s not fun. Without the chemo treatment my arthritis would be terrible. I would wake up with swollen feet, ankles, knees, legs, arms, and hands. Not fun at all. Walking and getting things done was a pain. I still struggle with getting things done, but I am also blessed with a fantastic caregiver that helps me accomplish household chores.

A long time ago I made the choice to have a good attitude no matter what. I am going to enjoy my life. I am going to celebrate my victories. One of the victories that I am celebrating is the fact that even though going out looks way different than it did 6 years ago. I still can go out with the aid of my wheelchair. In fact, I went and saw Hillsong United and lost month I saw For King and Country. For me, music makes my life enjoyable. So does reading books, writing, and snuggling with my cat, Nicholas.

If I were to stay in the place of negatives, singing the song of “Why Me?” I would be in a different mind frame. One that focused on my pain and challenges instead of embracing them and moving forward. I still struggle, I’m not perfect at embracing moving forward to my victories with my illnesses but I let that moment happen and then I move on.

Life is not easy. Not for anyone, healthy or unhealthy. We all have a choice to make. Focus on the obstacle or focus on the joyous moments that life offers us. I am choosing to focus on the joyous moments and move forward with authenticity and commitment to my wellbeing. How about you?