Take up your cross daily!

 Most of you know that when I was diagnosed with Hashimoto's Encephalopathy, two years ago, I thought the time of suffering without any answers had come to an end.  However, being diagnosed with a rare auto-immune neurological disease meant that there were a few opinions about my illness, but very little knowledge.  The Mayo Clinic was clear about the fact that there would not be a cure, but that there were a few treatments available, and my body would decide if any of them were going to be right.  Two years, 10 specialists, and 22 medications later, we know that my condition is progressive, and is effecting almost every organ in my body.  A month ago, my kidneys were added to the list.  I have outlived the studies done on progressive cases, so I am treading in uncharted waters...and by the way, I don't swim!  I do doggy paddle and float on a sun raft with grace.

My point is that in the beginning, I was brave.  Truth is that it was probably a combination of being stubborn and in denial.  If it were a burning building, I probably would not choose to run inside.  I did have peace though.  I had faith that I would be saved.  We tried many different medications and they would give hope and short term relief, but none of them were magical.  I began to accept that the doctors were not going to save me.  I remember attending a funeral for one of the most amazing women I have ever met.  She had battled cancer multiple times while raising her two children, teaching at a school, and playing the piano and organ at church on Sundays.  Cynthia's children sat on the front pew, while people stood...one by one, to share how she had touched their lives by sharing her heart or showing compassion.  I was a new mom then and instantly knew that when my time came, I wanted to have lived a life that would make people want to stand and tell my children how I had made a difference.  But in reality, nearly a year into my illness, an anger grew. 

I was angry that I might not see my children grow and get married.  I was angry that my life had already seen so much pain and grief, and I wasn't getting the break I thought I deserved.  I was angry that people in my life continued with theirs.  I was angry that some who stood by me in the beginning grew weary and disappeared.  I wasn't living the life of a woman giving a testimony of how great my God is.    We are never promised that following God will lead to an easy or fair life.  In fact, Jesus says in Luke 9:23  "If people want to follow me, they must give up the things they want.  They must be willing to give up their lives and pick up their cross daily."   Over the last two weeks, I have learned that my heart isn't working correctly and that I will need a pacemaker and medication.  Last Tuesday, I received news that my six month cancer screening showed regrowth.  But I am not going to live my life in fear.  We have decided to stick solely with medication for my heart for as long as I can.  And since the re-growth of cells is due to the medication I am taking, and will take for the rest of my life, we have decided to wait six months and re-evaluate my status, rather than having another surgery.  I also returned to work part time on Tuesday after being home for the last year per my doctor's instructions.  Life is not a piece of cake, but I will pick up my cross daily and take one step at a time, trying to be an example the best way I know how.

 I have made plenty of mistakes and made wrong choices, but ultimately learned that my illness gave me a gift.  Several in fact.  This may sound weird, but my illness has been much like many friends I have had in the past. Sure, it has caused me pain.  It seems to come and go from my life in ways and at times that are hard.   But it has also caused me to grow in my faith.  It has brought people into my life that give unending love and support.  It has introduced me to people across the world that are walking the same path.  It has given me the opportunity to grow my patience. It has forced me to realize that God is the only true constant in my life.  And it has given me the chance to teach my children how to face adversity knowing that the Lord is on our side.  If you can imagine this disease as a bazaar relationship with me for a minute, then you can see how my favorite song from the musical Wicked says it best:
                     I've heard it said, that people come into our lives for a reason
                     bringing something we must learn.
                     And we are led, to those who help us most to grow
                     if we let them, and we help them in return.
                     Well, I don't know if I believe that's true,
                     but I know I am who I am today because I knew you.

                    It well may be, that we will never meet again, in this life time
                    so let me say before we part
                    So much of me is made of what I learned from you
                    You'll be with me, like a hand print on my heart.
                    And now whatever way our stories end
                    I know you have re-written mine by being my friend.

                    Like a comet pulled from orbit as it passes the sun,
                    like a stream that meets a boulder halfway through the woods,
                    who can say if I've been changed for the better,
                    but because I knew you, I have been changed for good!                        

heart broken...

I expect a crazy week at our house, but after all...it is May!  Logan has 3 baseball games in 5 days and we are throwing karate into the mix.  John, my husband, will be in Houston all week for a certification program on solar energy, (yes, he is a nerd!)  And I have two important doctors' appointments to attend.

This morning, I met with my cardiologist who gave me some results from tests that I had run last week.  They showed that I have supraventricular arrhythmias occuring.  In very basic terminology, my heart has an electrical problem in the upper chambers of my heart.  Sometimes, it beats too fast.  Sometimes, it beats too slow, and the timing between beats is often irregular.  As I have Hashimoto's Encephalopathy, an auto-immune disease where antibodies made by my immune system are attacking neurons in the brain, creating erratic neurological impulses...it is fair to believe the two are related, but no one will commit to that just yet.  No matter what, we will treat it the same way regardless.  The blessing is that we are going to try to treat this.  I feared that they would say my disease created too many obstacles to treat aggressively.

It appears that we will treat this with a combination of a high-tech pacemaker and medications.  The fact that my heart changes speeds so often, they expect that the battery will need to be replaced every six years, rather than the 10 that many people are able to wait.  The fact that I am on immune suppressants has perks and complications.  This medication is used as an anti-rejection medication, but it increases my risk of infection.  They found mitral valve prolapse as well, but this only increases my chance for a bacterial infection in the heart.  They are not too concerned over this.  Initially, we will start medication and monitor its effects for two weeks.  If I have luck with it, we will wait as long as possible for the pacemaker.  If the medication slows the heart too much, then we will walk into the process of getting the pacemaker.  We are waiting on the results of one more test.  The computers  crashed while I was in the office.  Nice to know I am not the only one with technical issues!  If it shows that my heart is going into a block (getting confused and pausing for at least 3 seconds), then we will do the pacemaker immediately.  Driving will be a game time decision.  As my disease and status changes from minute to minute, the doctor wants me to be the one making the call.  He knows how life changing it would be for me to stop driving all together, so it will depend on how I am feeling and how I react to the medication. 

Lastly, if my prayer warriors would join me in praying about my appointment tomorrow.  As many of you know, the immune suppressant I take makes me 900x more likely to develop about 6 different kinds of cancers.  Those are not good statistics for long term use.  We found abnormal cells six months ago and had them removed.  I go in tomorrow for screening to see if they missed cells or if they have grown back.  It will take a couple of weeks for those results, but just going in for the screening has me a little worked up.

Thank you friends!  I also want to share that I have had other patients with HE read my blog, as well as physicians and they have contacted me.  God has created a network of patients for a really rare disease and I have been blessed to walk some of them through my journey.  I love it!