A Week Is A Long Time

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…