Saturday, March 16, 2013

Medical Update

I haven't done a medical update in awhile, so I decided to do one today.  

I will start with myself.  

I have a cyst in the middle of my brain and I have had a lot of severe symptoms that indicated that the cyst might be the cause of them....mainly visual disturbances and severe chronic headaches.  

So I had a another MRI, and I was so excited to find out that the cyst hasn't grown at all in the last year, and it isn't causing any problems in my brain...praise the Lord!  

The treatment is brain surgery, so I am thankful to avoid that. :)  

The somewhat bummer part of the news is that it means that the chronic symptoms I have are a result of my chronic incurable disease, Mastocytosis.

I am thrilled that the cyst wasn't the problem yet I feel mad that it isn't.  It isn't that I want it to be--I REALLY DON'T want it to be; it's just that I wanted the source of the symptoms to be something we can fix.  So in essence, I didn't want it to be either of those things because I wanted it to be something that came with an easy fix.

The problem with living life with a chronic incurable disease is that it can't be fixed, and you live with it every single day.  Our whole life revolves around having the disease, not because we let it, but because it forces itself into every area of our life.

All our decisions are based on how the disease would be affected if we did this or that.  And we can't fix or change any of it past what we are already doing.  

  And my personality?  I am a "fixer"; when I am faced with a problem, I become obsessed with finding out what it is, and then I become even more obsessed with trying to get rid of it.  To fix it.  And with this, I can't. I can't fix it for me, or for my son, or for my daughter...I can't fix it at all.

So everyday is a choice to live in pity or live in trust.  And I strive to choose to trust every minute of everyday.  Trust in what?  That the Lord's plans for our lives, although different than my own, are good and are with a purpose that is greater than any of us can understand. 

The day that I found out the news and had all these conflicting emotions while I dealt with some significant pain, I read this in my Jesus Calling Devotional, by Sarah Young:

"Learn to live above your circumstances. This requires focused time with Me, the One who overcame the world. Trouble and distress are woven into the very fabric of this perishing world. Only My Life in you can empower you to face this endless flow of problems with good cheer.

As you sit quietly in My Presence, I shine Peace into your troubled mind and heart. Little by little, you are freed from earthly shackles and lifted up above your circumstances. You gain My perspective on your life, enabling you to distinguish between what is important and what is not. Rest in My Presence, receiving Joy that no one can take away from you."

The two bible verses for the devotional are these:

John 16:33 (Amp)

I have told you these things, so that in Me you may have perfect peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer. For I have overcome the world.

John 16:22 (NLT)
You have sorrow now, but I will see you again; then you will rejoice, and no one can rob you of that joy.

I felt so comforted, because the Lord not only clearly hears my prayers, but often times He answers them through devotionals such as the one above, and through the words of others; other times, it's through a peace He puts in my heart...a peace that cannot be understood.

So I continue to struggle with chronic symptoms...brain fog, headaches/migraines, neck pain that radiates down my shoulders and arms and into my chest where my port is, leg and arm weakness; there are plenty of other things I deal with as a result of the disease but these symptoms are the ones that are not currently responding to treatment at this time. I am hopeful that we will be able to come up with something that will help it so that I can feel better even though I have to live with this for the rest of my life.
Gavin is doing "well".  Our well, and a healthy person's idea of well are two totally different things though.  Our well, is as well as can be expected with all that he deals with...yet our well is a good well, one that we have come to accept and rejoice in, with the Lord's help.

He is playing baseball without a PICC line

Reading finally clicked and he is really doing it now...finally!  

After 3 long years of doing the same thing over and over to no avail because it wouldn't stick in his memory.  
This, my friends, is a major victory, and I couldn't be more proud of him!

The fact that I was the only one that taught him also gave me a sense of joy that nothing could take away...i listen to him now, and all I can think is, "I taught him that!". :)

While he is struggling with stomach acid and body aches and headaches too, he is good as it's going to get.  

But considering that he is able to play a couple days a week is a great thing.  He might never have the energy or endurance of a healthy boy, but what he has is wonderful, because Lord knows, it could be a lot worse.  We thank Him that it isn't!
Chelsea is doing well too...she has had little masto symptoms pop up again since she is entering middle school...the puberty years....the disease gets worse during this time.  

But since she is already on meds, she only has needed some minor adjustments.  

I hope it doesn't get worse, because it's been nice that she has been SO stable since we brought her home to homeschool full time.

She is in LOVE with piano playing and is currently learning all the songs in the Sound of Music.  

Then she plans to move into classical piano.  She is a girl after my own heart.

She is as goofy as ever; if you know my family, you know that we love to laugh and be silly...

we try to in every moment we can.  Laughter lightens are load and I consider it a gift from the Lord! 


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