So, I cannot believe it has only been a little over a week since I learned I was not a candidate for the pain relieving pancreatic surgery.
It has all been a roller coaster ride: emotionally and physically.
It has also been a very rough time for my family. They did not know they were going to be going on roller coasters any more than I did. It is scary for them too.
I have been learning more about that and trying to make room for their fears and responses and general abilities to cope.
For my son, I have found a great place for him to get some very focused therapy that concentrates on having an ill parent.
For myself I have a new and very interesting ‘healer’ and counselor to try out next week. She does all kinds of stuff that I am interested in learning about.
For my spouse there is whatever he wants to find. I cannot find it for him and I am letting that go.
I am chugging along with my ‘to-do’ list from my last blog entry.
I have seen the two most trustworthy doctors I have and gotten some sound advice and I am slowly but surely starting to eat a bit of solid food again. However, the goal here is massive weight loss so I am very, very careful what and how much I eat. If I eat too much, my gut freaks out anyway so I have a built in stop mechanism!
I am up and dressed and getting out and having goals every day.
That may not seem like much to a non-sick person but for a chronically ill person coming out of a long bout of illness, it is huge.
Do I hurt? Yes.
Am I cutting back on pain meds? Yes.
But, I am trying to find that sweet spot where I listen to my body and not the negativity and self shaming in my head. In the sweet spot, I hear things like, “Katie, you just did a really difficult task. Go rest a bit!”
I am clearing out a ton of paperwork and photos,etc. from my parents’ estate that have been stuffed into a bedroom closet in my house for five years. It is a good thing to do. I am ready. I wish like hell they were here but I am okay with the fact that they aren’t.
I have amazing memories.
Today, when the therapist that is going to see my son came to the house for the in take session, I told him I have autoimmune disease and primary immune disease. He heard, “autoimmune disease.”
He proceeded to tell us he did a medical rotation in school and knows all about autoimmune disease and that it is %95 psychological.
I almost told him to leave.
On the outside I showed nothing. I simply said, “I have diagnosed disorders that are treated by specialists with pretty serious medications.”
He then proceeded to ask about the amount and type of pain medication I am taking.
I tried to explain and he became preachy again.
As he got ready to leave he asked if there were any constant treatments I am on.
I said, “Yes. As I was saying, I am on weekly infusions of immunoglobulins.”
He did not know what it was so I tried to enlighten him.
Clearly he was out of his knowledge range.
That is fine! I don’t expect ANYONE to have heard of a disease that effects so few people.
But I also wish people would be more sensitive to NOT knowing it all.
He is very intelligent, very well educated and well meaning and ultimately I decided what he thinks about me probably doesn’t matter. As long as he doesn’t tell my son I have made up my diseases we are fine.
But, it just brings me back to the reality of life as a Zebra.
No one really “gets it.”
And, there is no reason for me to expect they will. I just want a modicum of respect.
I could begin to surmise that it is a feminist issue.
I could go all academic on it and write about that.
But I won’t.
So, here I am.
I am one week out from having been told no.
I have learned that I can recover and move on just like I have before. I have learned that no matter what I do I just have to do it one day and maybe one hour or one minute at a time.
I have learned that if I start the day with all the right ingredients: prayer, meditation, exercise, perfect nutrition, etc.
I run like an almost well person.
But, the days will come when I don’t run so well and my oil needs changing.
I guess I need to store all the good things for those days.
Until then, I am going to not worry about the naysayers and the arrogantly ignorant.
They have nothing to do with me and I have nothing to prove.
I am self contained and self aware and competent.
I do not need approval.
I have all that I need from a higher power…