As I sit down to type this, I'm overwhelmed with emotions. I'm excited. I'm scared to be excited. I'm just plain scared. I'm overjoyed. I'm in disbelief. I'm fully believing.
Yes, I'm a girl with a lot of feelings.
We traveled to Hopkins last week for a visit with Dr. ANS. This is my 10 year anniversary of being his patient.
We could not have received better news than we did this last week.
|Lake at My Favorite State Park|
Dr. ANS said that he expects me to continue to get better. And better. And better.
We don't know what my optimal level of health will be, but this is the best news we have had in 16 years!
When he said this to me I said: "Are you sure? I'm afraid I'm going to crash again? Are you sure I won't crash again?"
Well, he's been doing this for more than a quarter of a century now, so really, I need to trust him.
He said he was sure I would continue to improve, unless something absolutely crazy happened like I fell off a horse and hurt my neck (like one of his patients did).
|Lily Pads and Light|
My setbacks will become less frequent. They will be shorter in duration. And they will be less severe. But they will still happen, and I will learn to plan for them and accept them.
Dr. ANS feels that my body now has what it needs to heal itself--through the medications we are using and now PT. The challenge is that now that I have a taste of FREEDOM, I cannot get too greedy about it.
We have to be patient and take things slowly. We have other medications we can use and add in, but we also need to be careful not to rush the body in its healing. Sometimes it is better to let well enough alone for a while before adding in any more new meds. It's a careful balancing act.
Right now, my body is in a place of realizing: "the more I do the more I can do." As I've found the right medications to increase my functioning I am able to do more, which in turn builds stamina and becomes a positive cycle--rather than the vicious negative cycles my body has been in for so many years, despite our valiant efforts to break them.
Somehow we finally reached the tipping point to send me in the direction towards healing!
Dr. ANS is not one to offer false hope, be overly optimistic when there isn't reasonable evidence to be so, or to mislead me.
While at our appointment we learned so much more, but I will save these for future posts rather than writing one long novel of a post!
A part of me has always believed that maybe, just maybe, I could get better. Another part of me has learned to create a space of finding a way to live as if this level of disability will always be my life.
Now, I can wake up every day knowing that healing is happening, that healing is possible, and that after 16 years of patience, perseverance and resilience we are looking at a new and different future than we ever imagined.
This may have been the best birthday month I have EVER had--for about a thousand reasons!
The light inside me is dancing, dancing, dancing with joy.