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:)    

Running the race

As many of you know, I have a team of specialists that I visit on a regular basis.  My own personal Avengers!  The fabulous part is that they all communicate really well together.  They are all at the top of their fields and are often recognized for their advances and "out-of-the-box" way of thinking.

I met with my immunologist a couple of weeks ago and my blood work looked great, with the exception of my antibodies.  They had increased during the time when we had withdrawn treatment, and they have yet to come down. This could be why I have had more symptoms lately.

Two years ago, after having a relapse and experiencing the usual stroke-like symptoms and tremors, my neurologist from the Mayo Clinic explained that because I am still considered young in their field of medicine, she believed my brain would compensate and find new pathways to communicate.  I just needed to give my brain the opportunity.

Last December, I was reminded of this conversation after I began losing the use of my left arm and leg. Those symptoms improved after restarting the immune suppressants, but I was struggling to get back to where I was before I got sick.

With encouragement from my 42 year old Neurologist who runs Iron-mans for fun, I returned to the gym to try to live a normal life.  Six month later, I am running and exercising almost at the level I was before I got sick.  I have even taken on the challenge of running a half marathon on the 1 year anniversary of my last relapse. 

I am constantly reminded though that this is a dance and I am not always leading! I have been unusually tired over the last couple of days, and fighting harder to stay positive.  I learned that my last neurological test of my fine motor skills showed zero improvement, and actually declined slightly despite all the other improvements that I have made.  While my doctors will not speak in definite terms, it does appear that these symptoms will be permanent.  So I will be brutally honest with you all...the last couple of days have been hard. I need to be strong for so many people, but today...I'm not, in fact...I think I am going to crawl back into bed.