Month: July 2015

I chose my title carefully for this post. You see I have found my way back to some places I thought I would never go again.
I have found my way home to my relationship with my Higher Power as I understand Him/Her and I have returned to the 12 step group I call home.
All of this is new and different than before but so deeply satisfying. I have to do the footwork!
I have to reach out!
But, I am finding that when I do, even on a dark, dark day, there is a well spring that comes from some other place inside or outside of me. It gurgles and burgles with hope and light even when there is none.

Has this changed my diagnoses? No.
Has it changed the complexities of my life with several chronic illnesses, a family and a big house and lots of people and pets to care for? No.

But it is changing me.

And I just have to say, “Thank you, Lord! I had not planned on ever really coming back but you dragged me here anyway.” In addition to my 12 step group I am finding G-d in my heart, and love in bones in a new faith journey.

Each day unfolds in its own messy way. Hour by hour we chose how we will experience our lives; all of us.

For a Christian, the great leap of faith is to believe that Jesus Christ died on the cross for your personal salvation. That is a wonderful and amazing thing.

For me, the great leap of faith is that G-d is working in my life in new and different ways. I have been trying to listen, sometime with the sound turned down, for a long,long time.
I am being pulled farther and farther into the music, liturgy, language and wide ranging literature that makes up modern Judaism. It is like a smorgasbord. The faith and culture of my heart and of most of my family has brought me here.

I am finally home.

Am I all the way in and exactly where I want to be? No, of course not.
I like to jump into the deep end and see if I can swim and I can’t do that right now. I have to wait until I have the time and energy to concentrate on all I want to learn and experience.
My paramount responsibility right now is to my family. I am needed.
In the meantime, I read, I pray and I grow as much as I can.

I try to remember that my body and soul need constant care if I am to be up for the tasks ahead of me; today, tomorrow, the next day.

So, can I post another uplifting post on this blog next time? I don’t know!
I don’t make those sort of promises anymore. I just try to live the best life I can.
All I have to say today is here…
Shalom, Katie

It seems I have some answers. I should be happy about this. But, right now I am just frightened and I don’t feel too well. I am over the initial panic, but I have yet to begin any sort of therapy.

Thank you, G-D for my new internist. She is a gift. She put this all together and ordered more tests and made a differential diagnosis (what good doctors do).

I have autoimmune hepatitis. I think I have had it a long time and that makes me sad and angry. Autoimmune hepatitis means that my body is attacking my liver as though it were a foreign body and trying to kill it. This can lead to all kinds of nasty things, including liver failure.

Hopefully, with prednisone and some other immuno-modulating drugs, it can be put to sleep. From what I have read, I will probably be off and on the meds. They have side-effects, of course, but I can’t think about those.

Why didn’t any of the other doctors look for this?
Why did I have to get this sick?
Why didn’t my rheumatologist listen when I told her about my symptoms?
Why didn’t they test this when I spent seven nights in the hospital a month ago?

If all of this is so haphazard, we truly have no control. In other words, medicine is not very advanced. I have been reading and pushing and going to doctors and trying to find answers for this for at least three years. I have been told everything from “You feel too much pain” to “You need a psychiatrist to work on your childhood issues.”

This is all bullshit.

In the meantime I have struggled to live my life and deal with a body that was rebelling. I have known that something was very wrong and no one believed me.

This makes me so angry that I just feel like I can’t deal with all of it for another minute. I want to get fixed now. I am tired of waiting.

I feel bad. My body is swollen and I am nauseated and in pain. I am so tired that I feel like I could just sleep for the rest of my life.

If I do that, I might as well be dead.
Sometimes I feel like life is rushing past me and I am not a part of it. I don’t like that feeling.
I want to take part in my life and not always be sick.

I know, I know, I need to keep my head up. I have to be strong. I can’t show the family how low or crappy I am.
So, what do I do?
I guess I go on… one swollen foot at a time, right?
I have to keep ignoring the other stuff, just like I have so far.

When do I ask the doctor if we have a treatment plan?
I don’t know.
I really don’t.
I guess it shall all be revealed and I need to remember I have no control over all of this.
I do believe there is a power greater than myself and I call that power G-d. I believe that I am a part of a greater creation and that I am loved. I do NOT believe that suffering is something we are meant to have as a ‘lesson.’ That does not make sense to me.
We are imperfect and incomplete and small. G-d is the author of all and is our partner in this life.
We have the choice to trust that at the end of it all, our Partner is looking out for us in some way we don’t even comprehend.

The more theology and what not I have studied the more certain I have become that I know very little.

So, that is where I am today: little, scared and not knowing much of anything.
I guess I will choose to do the only thing I can and live through the next minute with my head up.

For the last several months I have been having episodes of Rip van Winkelism. I have been attributing it to just the wear and tear of living with the mess that is my body and going through the daily routine that is my crazy life.
I am beginning to think there is more to it than that.
Like, maybe it is all connected somehow..
Like circular… you know?
Dude….
Here is the cycle…
Katie goes about her daily life of: cooking, cleaning, managing, corralling, calling doctors, writing, trying to exercise, eat well, teach Samuel, be a good listener and if needed, adviser to various family members, being an attentive spouse and listening to her body’s ever-present whining.

Oh, yes, and driving everywhere, everywhere….

And this is not too bad.. really.

But then there are the nights. The nights really aren’t too good. At night there is the pain in the upper right quadrant of my gut. It is louder at night so I have to listen to it. And then, there is the itching. I itch all over. That is a liver thing as I understand it. It correlates to having stupidly high liver enzymes, which occur off and on and no one understands. Instead they just experiment on me and I am getting really, really tired of it.

Oh, and I am nauseous off and on.

So, after about a week of this, I pass out. I don’t just pass out: I can’t move. I am comatose for upwards of 20 hours at a time. I don’t drink, eat or pee.

It is like not existing.

When I finally awaken I feel like I have to make up for lost time. I also feel like I don’t even want to wake up.
I would rather just continue in my state of non-being.

The thought of getting up and facing whatever it is that is making me sick overwhelms me.

But, there are other thoughts; good ones.

I get up for those.

I want to kiss my family and pet my pets.

I want to see the sunshine and feel it warm my face.. all of that corny shit.

So, I do it again..

I set myself to rewind.

But I am beginning to wonder where it all leads. I am hoping against hope that a solution can be found so that I don’t have to lose a day. It would be much more efficient to just sleep at night, when everyone else is doing it!

So, I talked to the new Wunderartzt (Wonder Doctor), my internist, yesterday. She is really amazing. she is going to run interference with the liver specialist and speak to the immunologist and talk to the rheumatologist about the fatigue issue. She thinks all of my symptoms are related to being over medicated. I don’t think that is the answer to Everything but at least she is willing to tackle all the issues and work with me.

In the meantime I am going off of as many meds as I can.

I have no problem getting off of them. I hate taking handfuls of medications.

She sent me to the lab for a big blood draw for all kinds of tests yesterday.

The poor phlebotomist couldn’t get me to bleed but was persistent and finally managed so I left.

We shall see.