Is this what they call the 'test'?
When I started this journey, one of the first motivational talks I listened to was, positive thinking by Tony Robbins. His challenge is to try and think positively for one week straight. Of course there would be negative things that happen in our everyday lives, and he proposed to acknowledge the negative situations when they arise but to let them go immediately. Find a positive solution, or positive perspective and then choose to let the negative thought go, it is important not to let it consume you. This was his challenge to do everyday for one week straight and if you let something ruin your day or break your positivity, it was back to square one. Let me tell you, it's not as easy as it sounds. The first couple of days are spent being very conscious of how you are feeling and to take control of those feelings. Eventually, it starts to get a little bit easier, and he promised by the fifth or sixth day, just when things seem like smooth sailing, something incredibly negative will happen just to test you. Why? Because that is the way life is.
Well, Mr. Robbins... you called it. After school I came home feeling good, I took the dogs for a longer walk today because I was feeling so great and it was a beautiful day out! I decided when I got back inside that I would catch up on some Ted Talks for my daily dose of inspiration. Just as I sat down my phone rings. Dr. Yu's office. Mmm.. odd. I answer the phone, thinking the receptionist is calling to reschedule my follow up appointment with the doc. To my surprise, it was Dr. Yu himself.
"Hi, Tonianne. I'm calling because we received your blood work back, and the other biopsy report came back."
"Another biopsy? I thought there were only two?"
"The pathologists found that your first biopsy was inconclusive, so they sent it to another lab for a second opinion. The diagnosis has changed but the treatment is going to stay the same."
.......great.
"What you have is in fact an autoimmune disorder. The disease you have is called pemphigus vulgaris."
I spent a total of 4.04 minutes on the phone with the doc. I found out that it is another rare skin disease and that I would keep taking the medication I am on now, but as soon as the inflammation clears I would be off the prednisone. Good news. Moon face remember? After he tapers me off the prednisone, I will be on a 'long-term' medication called dapsone. So that this condition doesn't return.
"Okay, great! sounds good!"
I hang up the phone. Nothing to be worried about. After all, I've been improving so much this past week. I feel like things are going to be just fine. Let's research what pemphigus vulgaris is.
These are the words I see: "Serious skin disease."
"Not curable."
"Chronic and reoccurring"
"Reduces life expectancy."
"Can be fatal"
My stomach turned. I read website after website, searching for the silver lining. Searching for cures, treatments, success stories. Anything.
Calm down Toni. Just calm down.
In perfect timing, the door opens and my husband walks in. One look at me and he knows something is wrong. By the time I am done explaining everything, the tears are streaming down my face. What scares me is that I see the worry in his face too. My brain kicks into diversion mode.
"I'm getting better though. It's going away," I say as if to convince myself that this is just some sort of mistake. My brain will not allow myself to think that I have a life long disease. It still won't.
Thankfully, my husband didn't allow that either.
"Listen, you're getting better. Don't let this mess with your mind. I've seen how much you have changed in the past week, how positive you are. You can't let this defeat you. Don't let this take it away."
He's right.
We looked at treatment pictures of PV, and seen people whom had way worse conditions than I do
and their after treatment pictures showed them with clear skin, as if nothing had happened. I also learned that 80-95% of PV cases are resolved with treatment. That patients can go into remission and stay permanently in remission. Not only that, but I truly believe that the mind can heal the body. The strength of spirit can over come adversity. So there is hope.
I went on to watch my ted talks videos, and I was thankful that I did. I watched the first one that stood out to me, "Overcoming helplessness," by Nick Vujicic.
I encourage you to watch it. If anything maybe it can inspire you for a few short moments. As for me, it did so much more. It brought me back to where I was. To the understanding of where I am and the journey that I have chosen to embark on. That I have fully accepted to go through this struggle, and to make the best that I can from it. As Nick says, "It will take me 3 minutes to tell you something discouraging and you may never forget my words."
There are people in your life that will bring you down, but they are not your biggest discourager. You are.
It's about control. In this world, there are three things that we can most definitely control, that are 100% in our control.
How we feel.
How we act.
How we think.
This has been said to me before, and I've read it in a few books. Though, sometimes we need life to put things into a clear perspective for us.
I feel great. I feel as though I am healing and that I am getting better. I am doing things this week that were nothing but sheer pain for me the week before.
I choose each action of mine to be mindful. I am mindful about how I smile at people. That I choose to make eye contact with strangers. I choose to act in the way that I wish people to see me, and I don't mean I facade. I want people to actually see me.
Finally, how I choose to think. I am a fighter. I always have been. I am strong and resilient. I REFUSE to believe that I am going to have a life long disease. I know that I am going to beat this thing. I will not let a disease define who I am or how I live my life.
Yes, today was my test. It was a very good test. So thank you life for that. Thank you for showing me that in the last six days I have made myself more mentally, emotionally, and spiritually stronger. Thank you for showing me that I have beautiful people in my life who love and care about me. Thank you for timing. For each time that I felt overwhelmed today, you brought two of the most wonderful people in my life to say something positive and supportive to me. Thank you life for a clearer perspective on what value means.
An elder once told me, "Creator will never give you more than you can handle."
I think of that today and it makes me smirk. I guess creator knows just how strong I really am.
"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." -Thich Nhat Hanh
I dedicate this post to my wonderful husband who has shown me through this time of need what the power of our love and faith in each other can do. He has an amazing heart and a gentle soul. And to my baby sister who has always reminded me of the love and strength she sees in me, her belief in me is all the motivation I need to keep going. She is the greatest person I know. I love you both.
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