Infusion Day!

Despite having a big day, I am not tired. Could it be the 100 mg’s of Solumedrol that was injected into my IV before the Rituximab? Yes, it was. This morning I headed down to Legacy Salmon Creek Infusion Center to get my 6 month injection through IV infusion. This drug keeps me healthy. This drug has made it possible for me to have a life without a ton of dilation surgeries every month in order to keep my trachea open. This drug has made my bones feel better. This drug has allowed me to enjoy my life again. Although, I’m not as healthy as I once was. I am better than when this whole thing started in 2007. I am stronger. I am can handle the extreme fatigue I will feel after the steroids wear off tomorrow. It’s worth it.

Rituximab has made it possible for me to consider the resectioning surgery that I am heading towards. I have a team who is looking for options for me for when I am not able to communicate vocally. It’s a big possibility and although, it scares me. Not breathing scares me more. One of the numerous things I have learned on my journey through Vasculitis, Chronic Illness, and making hard decisions is that fear, although, felt doesn’t get to dictate to me how I will walk my path. Yes, I am scared. I’m fearful of how I will accomplish my goals. Especially the ones that will allow me to teach a program that I whole heartedly believe in with two of my best friends. I am also scared of my life will be like if I don’t get this surgery done, or if I don’t get Rituximab every six months either. I would be one hot mess.

One of my health care coordinators that is through my insurance is helping me find things I can do so that I can talk and do what I need to do. She shared with me some awesome site. One is a free program on line to learn ASL, American Sign Language. I aim to do this. She has written the deaf school to see if I can qualify to learn sign language through them. She also gave me some links of programs I can download on a smart phone, tablet, or my lap top that will speak for me and it can sound like a person instead of a robot. Although, I kind of like having a robotic voice. I can pretend that I am Vicki from Small Wonder. Do you remember that show from the 80’s? So things are progressing for me.

I can already feel a bit of a difference in my body from the infusion today. Also, I was able to use my new tablet to keep in touch, take pictures, and post on Facebook today. I was also able to play Words with Friends and check my email. I know this is a valuable tool for me to use when I am in the hospital. I don’t have to bring my huge lap top. I can just take my charger cord and my tablet with keyboard to the hospital and keep in touch with my people. That is a nice feeling. What did I learn on this infusion day?

• That I have a lot to be thankful for. I still have my limbs, I can still talk, I still have my sense of humor, I am not in serious pain, and most of all I have a great support system. That is more than most people have.
• That I do have options. I have team member who are looking for options for me to use, so that I can have a better life.
• That I do enjoy Christmas, Christmas movies and music especially and the decorations.
• My wheel chair is the best tool I have. It has made getting around easier.
• I want to go to the Grotto. I have had a neighbor tell me I should go for the last 6 months. He wants me to get prayed over. I looked it up today. It’s a gorgeous garden in a forest in Portland Oregon. I want to wheel around the gardens. It’s only 5 bucks. Not bad. The Christmas Lights are a bit more, but it’s worth it.
• I also realize that I need to track my symptoms better before I get the infusion and after so that I actually know what to tell the doctor when he asks me.