This is a blog set up for those family, friends, and other patients who would like to follow our journey of battling Hashimoto's Encephalopathy. While this disease does not have a cure, we have faith that we will endure.
Tuesday, May 29, 2012
A new lesson...
My 12 year old resembles me in very few ways, but her level of frustration and lack of patience with those who hurt and disappoint is something we share. Even as a child, I struggled most with Indian Givers. Clearly, that is not a PC term...but it was the one we used. It was when someone gave me something, then yanked it away as soon as they saw I was enjoying it! That has been what I have been feeling the last month...only, I don't have anyone to blame.
My health has been fantastic...all things considering...for the last six months. My strength had returned and I had not had a major episode in several months. A friend of mine encouraged me to set a goal...so I set a ridiculous goal of running a half-marathon by the end of the year. This is a goal that I intend to keep, but I have hit a few hiccups.
I have had to deal with a few infections and my energy has been less than ideal, but I have continued to train. You see...what would take most people three months to accomplish, I am prepared to take six months. One thing about training, is it has forced me to be intentional about everything...rest, nutrition, hydration...all things that I normally gave little thought. But I have had so much taken away and told what I can't do, that I need something to reach for and to prove that I am a fighter and not as fragile as they think.
The fatigue has been my greatest challenge, but a sweet friend named Channel encouraged me to do what I can on the good days, and not to feel bad about resting when I need. That is something I have taken to heart. But I hit another obstacle this month...my heart.
I fainted on Mother's Day which pushed me to return to the Cardiologist. They did a full work up on my heart. While at the office, I had a small relapse with convulsions. I fainted again that evening. The following two days, I struggled with my motor skills on my left side. But I was blessed with the chance to spend some down time with my friends in Fredricksburg and then at the river.
I had previously been told that we might pursue a pacemaker to stabilize my heart rate and rhythm, but I have learned that the Hashimoto's Encephalopathy prevents me from being a candidate. Surgery and medication would both be too risky due to the episodic nature of the disease. Today, I learned that my heart is great at pumping blood away from my heart...but my pressure is too low to return the blood back. The episodes are linked to the auto-immune aspect of the disease. This explains the fainting and dizzy spells. We will just do what we can to enable my body to recover quickly.
So once again, I was enjoying my health and progress...then had some of it taken away. I told a friend today that new news always feels like having the wind taken out of my sails, but I know it cannot take away what I have accomplished. Two months ago, I led my children to the top of an ancient volcano. Last month, I began running again. I will keep fighting and pressing on towards my ridiculous goals:)
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Keep up the hard work. Remember, it's not the arrival at the destination that you'll remember most, it's the journey. Sounds like you are miles (pun intended) from where you were just a few short months ago. Keep your head high!
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