Thursday, March 20, 2014

Auto-Immune Confirmed

So today I was officially told that I have an auto-immune disorder. This is not a big surprise. Ever since my primary doctor suspected it nearly two months ago I knew it would turn out this way.

She is that good of a doctor.

But I had to go through all of the tests and blood draws and everything else to confirm it. So that is what I have been doing.

And today's test, the one that confirmed it, well, to put it bluntly, it sucked.

I had an EMG. This is a test that measures the strength of your muscles and any change in the strength after exercise.

And to do this the shoot electric current through your body

Yup, it is an electric shock test. Not my favorite.

So you get into one of those stylish hospital gowns, then they start at your feet. They attach electrodes in a couple of places then shoot some electricity through you to see how your muscles respond.

And they work your way up the body.

Foot, calf, leg, arm, funny bone, then the face.

And they spent the most amount of time on my face.

The electric probe would shoot out five bursts, then I would have to do some facial exercises, then five more bursts. This went on for about 8 minutes.

The resident held my head in place so I wouldn't jerk too much.

So after all the tests I was talking with the doctor and she confirmed it was this auto-immune disorder. Then she said, "I knew it was that from the beginning, but I had to do the tests to confirm it."


So I am starting on a new medication, hopefully it will make a difference. After four weeks I will meet with her again and re-evaluate. If the medication is not working as well as expected, then I will move to another medication. At this point she thinks that medication should take care of it.

And she did say that  hopefully in not too long I will be able to get rid of the eye patch.

That gives me hope.

So I ended my day with hope, and that is a great way to move forward.

Thank you for all the prayers and support, I will continue to keep you updated.

Tuesday, March 18, 2014

Thursday another test, Today dealing new realities

On Thursday I will be missing a few of my work meetings to go back to Madison for an EMG. From what I understand, this is a test to determine the strength of my muscles, especially the muscles that relate to my eyes.  It is also the test that will definitively tell me if I have Myasthenia Gravis or not.

I am really looking forward to getting those results. I want the diagnosis and I especially want to start the treatments. This has been going on a long time and I am ready for a step forward.

Having said that, I have started to notice that I truly do live in a new reality now. With all of the health issues that I have faced over the years, there have been very few, if any, physical effects on me. After cancer surgery I was doing a weddding a week later. After chemo I was back in the office within 48 hours. After radiosurgery, I was at a congregational meeting the next night.

Nothing has slowed me down.

But now, there is a new reality bearing down on me.

First I have to state, nothing big is really changing. I am still doing all my work, I am still traveling to all my meetings, I am still taking the girls to all of their swimming and tennis lessons. I am even in Chicago right now for three days of meetings.

But I am noticing that my eyes are getting tired much faster than they have in the past.

I have to take breaks from the meetings to close my eyes for a few minutes. It takes me longer to read things because my eyelids droop more. When I talk on the phone I rest my eyes so I can be ready for what is next.

It's not a huge deal, but it is a change. And it is a change I don't like.

Now I am hopeful that once I start treatments this will go away. I am hopeful that I will eventually lose the eypatch and go back to what was normal for so much of my life. I am hopeful.

But right now, this is the reality I live in.

All of us go through changes throughout our lives, including physical ones. And I think many of us struggle with these changes. Maybe it is the loss of our youth, maybe it is the fact that we just can't do what we used to be able to do and that frustrates us.

One of these changes is happening to me right now, and I am trying to find ways to embrace it rather than fight against it.

Oh, when I start treatments I will be fighting like crazy to get things back to normal, but right now, I am going to try my hardest to embrace this change and see what good might be able to come out of ir.

For example - since I need to rest my eyes more often, I am going to use this rest time as reflection time. I am going to ask myself - where have I seen God so far today?

When I am reading and start to get frustrated with my tired eyes, I will pause where I am and think back to what I just read, so that I engage with the book a little bit more.

And when I am no the phone with my eyes closed, I will push away the desire to multitask and concentrate on the person I am with.

I don't like this reality, but I have decided to use it to slow down my life a little.

And who knows, when things go back to normal with my eyes, maybe this slowed downway of doing things will continue.

So tonight, may all of you be blessed with open eyes to the blessings you have where you are.

Wednesday, March 12, 2014

A Shot in the Eye, Abnormal Results, and an Auto-Immune Disorder

I haven't posted much since the radiosurgery because I wasn't quite sure what to say. There have been a lot of doctor visits, more tests, and a possible diagnosis, but not anything concrete yet.

So here is where I stand:

I meet with the Radiosurgery doctor tomorrow. There is not much to talk about since I have not had another MRI yet to see how successful the surgery was. I was told that the MRI needs to wait a couple of months to see how successful the process was. So I will wait and assume that the tumor was blasted away.

The eye issue is still there. I wear a patch pretty much full-time now. The only real issue I have has to do with steps. I have a hard time judging the depth of the steps so I have become a big user of handrails.

The fluid behind my eye is decreasing, but not gone. So every time I see my eye doc in Madison I get a nice little shot in the eye to help dry the fluid out. They numb it up nice, so it really isn't all that painful. There is a possibility that if the discoloration behind the eye every grows that I may need a special type of radiation to deal with it, but the is not something we are considering now.

As for the double vision and drooping eye lid, it appears that my main doc was right, again. When I first saw her, before any of the tests, she made an educated guess that it was Myasthenia Gravis. This is an auto-immune disorder. It is not related to my cancer at all. It is a new, and rare, disease that has reared its ugly head in my life. I have had a number of blood tests that were highly abnormal and are starting to confirm this diagnosis. Next week I will have an EMG to test the muscles and confirm it.

There is no cure for Myasthenia Gravis, but there are treatments. The treatments vary from surgery to blood filtering to medications. With the treatments there is hope that the muscles in my eyes will work normal again and I can hold of the symptoms for a long time.

Once again, I realize just how special I am.

Most of the time I am pretty upbeat about everything. I enjoy what I am, doing and the activities the girls have us running to. I am busy and, I think, doing some good work.

But there are days that I am tired of all the doctor visits, the tests, and the waiting. To go a month without a doctors appointment is a dream.

And now we are in Lent, one of the seasons of the church year I appreciate the most. And it is this seasonal trek that keeps me grounded as I deal with all of the health stuff.

I will post more as I know more. As for now, my you always be blessed by having your eyes opened to gifts you have in your lives.