Home » The Magnificent Journey » Auto-immune » Disappointments!


I awoke at 4 AM looking forward to getting my results from the biopsy I had done at the end of October to see if I have IGG4. Arriving at my destination sitting in the doctor’s office anticipating the chance to finally know what I have and not just a bunch of guesses. The guesses and the waiting for results is what drive me bonkers. The unknowns, can it inhabit my ability to heal and to move forward in my life?

I do not think so. Here is why I believe this, because God created me to walk, breathe, read, sing, jump, and be in relationship anyway. I do not have to put on the shroud of the bitter sick woman whining, moaning, and let the disappointments of the day encase me in a tomb. I choose to live and make joy, not doom and destruction.
I am not happy that I have to wait another two months for my results. But the good news from the appointment is I get to reduce my intake of Prednisone down to 5 mg a day. And then after another week on the 5 mg a day I can start reducing the harsh drug of Azathioprine down to 50 mg instead of the 150 mg I have been taking. That makes me joyful. And I only have to get the IV infusion treatment of Rituximab every six months and I do not have to have to take it in two doses like this last time. Just one and that makes me want to leap for joy. Progress!

I shared my thoughts with my sister in law on the ride home. Sharing that if I truly thought about it from December 2009 when my medical journey began until this December 2012 I have made huge progress. From being so weak that I nearly fell in front of my brother, which is so embarrassing to being able to function on my own. Yes, I have to have a modification. Yes, I have a caregiver come in 4 times a week to aide me in household chores. I am so blessed. The fact is I have gained a lot from this three year process. I have gained the knowledge that even though there are disappointments and miss communications happening I have a huge team of people who are standing and willing to kick the ass of whatever is attacking my body. Each one of them was handpicked and presented to me in the most miraculous way. Even some I never would have thought would be in my life now, but a miracle happen. A healing of long ago wounds presented an opportunity to restore an amazing friendship. I have restored relationships with siblings that I have felt weren’t that interested in me. Dr.’s who have appeared mysteriously out of nowhere. Not everything is perfect, but the perfection in my mind lies in the way each one of them makes me feel. I have learned the value of me in this whole process. I have learned that men can not only be trusted, but really are not that selfish in the long scheme of things. The genuine true ones that love you like my brother will stand and help you if you allow and accept it and do not belittle them just because they are a man.

I realized that I have a negative tape that runs in my mind and sometimes out my mouth about men. I learned this from my own experience, but also the experiences of my fellow sisters.

Relationships and communication are still my core values. The knowledge that I have gain and I am appreciating and learning from knowing this is valuable. Another key eliminate is forgiveness is a vital thing in a relationship. That includes the relationship with myself, God, and every single person I encounter. I am glad that progress is being made.

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