When I was 12 I was diagnosed with Juvenile Diabetes, sometimes called Type 1. My body got confused, attacked the insulin producing cells in my pancreas, and here we are, nearly 30 years later, still working to find the perfect balance. The medtronic insulin pump gives me a slow dose constantly, and I "tell it" when I eat (and try not to lie) so that I can keep my blood sugars in line.
Soon after we were married I was diagnosed with Graves disease. Basically my thyroid couldn't make up it's mind how much it wanted to contribute. I was on and off of meds, fluctuating through pregnancies and nursing (when you can't take the medicine) and finally taking the step to have my thyroid "zapped" with radioactive iodine in the spring of 2010. Now I take a steady dose of Synthroid and my thyroid just sits there and takes up space. Good stuff.
July 4th weekend, 2008, I had my first 3 "episodes" - what we know now were localized partial seizures - After months of seeking help, and confirmation that I wasn't crazy, I was told I was having atypical migraines and put on a low dose of Topamax. I wasn't sure I ever agreed, but a diagnosis, even a wrong one, was better then not knowing anything. Just a little over a year after they first began, the "episodes" turned into a full blown seizure.
Not something I ever want to do again.
But the doctor seemed to take me a little more seriously after that - so that was good.
I have moved, and changed doctors several times. Tried different medicines and different routines. Had a few terrifying moments. One doctor thinks the best plan is to find which part of my brain is seizing and slice it out. Some days after swallowing 12 or 15 pills and still having 2 or 3 (localized partial) seizures anyway.... well, cutting open my head sounds plausible!
Add in a heart murmur, high cholesterol, and extreme arachnophobia - hehe. Well, it's a good thing Andy loves me!
More importantly, I am working to remember to love myself. Even though it is falling apart, by body is still the temple of the Holy Spirit. Sometimes I forget that, and spend moments in hate but I am always reminded that this is only my temporary home. I'll enjoy every moment here, in the messed up body, knowing that I don't have to take it with me!
Update: After a week in the hospital in November 2013, watching Channel 89, the doctor changed out several of my meds. I stayed again in February, touring the Valley of the Dry Bones, and decided to take myself off of all meds for a while. After nearly 3 months, with the least amount of seizures in 5 years, I decided to take only one seizure medicine for awhile and have been doing wonderfully. Sometimes I wonder if perhaps the first doctor had one thing right... maybe I will still "outgrow" this.
I am back to a healthy weight, have more energy, and often go two months between episodes. There is no understanding of why, but taking it one day at a time is working. So no complaint here!
Update: I spent a week back at UNC again, in Oct 2014. I don't think anything new was discovered. My brain is definitely damaged, but it doesn't seem to be getting drastically worse. My anti-gad 65 is way off, but I don't think I really even understand what that is... So, we still just take one day at a time.
Another Update: Summer, 2019 Several moves and several doctors later, we are moving toward brain surgery again. After moving back to 5-10 seizures a month, on the highest dose possible of the current med, a lot of problems with memory, and a loss of bladder control while seizing...well, it is seeming worth the risk. Most of the current blogs are about this journey.
I am going to University of Alabama Birmingham, volunteering for every research project and moment of education they can use me for and believing strongly that God brings good, through all things. Maybe not for me directly, but what they learn through my brain will teach someone else something, I am confident. That is enough.
Blessings,
2 comments:
May God's blessings surround you and your family. Thank you for what you do for us to have our freedom.
God is good and He will back soon! So looking forward to sharing heaven with you!
Came across your blog while surfing on Pinterest. Hearing your heart toward God and your family captivated my heart!! Thank you for boldly standing for our Savior and King and for having the courage and uncomprimising faith to lead your family to Him. May God restore strengthen your health and continue to shower your life with His goodness.
All of God's best to you Bethany :)
Shawndreka
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