Monday, February 21, 2011

Gotta laugh!



While sitting at my favorite coffee shop last week, a beautiful woman from church walked up and gave me a compliment about my complexion.  With all the medication that I have been taking, my skin had been having an identity crisis.  It didn't know whether to wrinkle or break out like a teenager.  I was using my daughter's acne cleanser and wrinkle cream!  It is nice to be feeling like my old self and the compliment felt great.  Not only did it make my heart burst, it opened my eyes to yet another way I had made progress.  After being diagnosed with HE, it was hard for many people to quit being so serious.  I found that it made the pills (oh...and there have been many) easier to swallow when I took them with a dose of humor.

Those who remember the night I was first diagnosed might remember my mother, sister, and me laughing the whole night.  There were so many things we found ridiculous.  Well, lets start with the fact that I chose the day that I went into full body convulsions (which lasted a hilarious 12 hours) to wear a mini skirt and 3 inch heals.  Every time the nurse asked me to follow her, I wondered, "Could she do this?"  Heck, I have danced backwards in heals, but never while doing the hippy-hippy shake!  Another nurse asked if I was cold.  Then they told me to drive myself to the hospital!  Really?  And this was my brain doctor!

Then I had an MRI where I was asked to be still, asked to fill out a "check the box" form, and then expected to feed myself rice, peas, and chicken...which came with a knife!  We laughed as I had a food fight with myself and my mother requested a plastic knife.  My pastor walked in expecting to bring peace to the situation and the first thing he said when he saw me was, "Well, that doesn't look good."

Oh, and the Mayo Clinic trip.  While looking at the Air Mall magazine, I learned that they sell stainless steal wallets and portable microwaves...yet I had trouble getting a small jar of raspberry jelly on the plane.  My husband, who shattered his leg four years ago, was pushing me in a wheel chair while wearing his giant brace.  It was camouflage and looked like a prosthetic.  He was asked many times which war he lost his leg in...he eventually started making up stories.  Each one was better than the last, then they would wonder what kind of wife was making him push her all over the Mayo Clinic.  I must have been really bad off!   

 
As time went on, people close to me would have momentary amnesia.  My mother asked me once, "Who is cutting your hair these days?"  Hmmmm...I had a sister that owned a salon, my mother and grandmother went to cosmetology school, yet she thought I walked into a salon and said, "Please give me the hair cut that highlights how my hair is falling out and stringy...maybe a mullet?"  The truth was, my hair was falling out so fast that when I asked my hair dresser to trim it up, she didn't charge me!  Yep...she was done with about three snips!  All in good fun.

Then there were the times people felt the need to point out the fact that I had gained weight.  My steroids made me put on 30lbs in 4 months.  Being that I am only 5ft tall, I went up four sizes.  Several people thought I went through 3 different wardrobes and didn't realize.  Oh, one even said, "It's a shame when that happens to pretty girls!"  Yep, that was an attempt at compassion.

 There were times when it seemed impossible to get out of bed and I threw plenty of pity parties...no really, you can look back through the blogs!  What I have learned though, was that other than God, I played the biggest role in how my life was going to be.  I learned that watching the world go by while I laid in bed was too painful, so no matter how difficult, I try to get out of the house.  When given bad news, I choose to focus on what needs to be done to correct that, and I remember all of the ways I have overcome the past.  My favorite bit of advice was, "Even though you are in pain, you do not get to be one!"  Life gives us plenty of reasons to be sad or angry, so never miss out on a chance to laugh, even if it is at yourself! 
        

Wednesday, February 9, 2011

Little things...

If you have followed this blog for a little while, you are aware that I have found a new appreciation for the little things in life that we often take for granted.  This point came easily to me after being diagnosed with my illness, but it is something I pray everyone will take the time to notice.

Last Thursday night as I was tucking my 9 year old son into bed, he prayed for two things.  He wanted it to snow that night just like the rumors were forecasting, and he wanted a snow day declared so that the whole family could enjoy it.  "Even if they don't cancel school, can we all just stay here and play in it together?" he begged.  My 9 year old has become too aware of the fact that we may have limited time together, so he grasps at every opportunity for cuddle time or a family movie night.

As I crawled into bed, my prayers were that I would be able to watch my children enjoy something so simple, but new.  We awoke the next morning with the finest dusting of snow and ice and we were able to tell the kids that school was canceled.  The joy on their faces, the giggles in their voices, the squeals as they touched the snow for the first time took my breath away.  What a blessing and a gift for my family.

 I visited with my Endocrinologist Monday and we reviewed some labs that we have been monitoring.  My kidney function has been high for quite some time, and partnered with symptoms that have been occurring for nearly 2 years, we have realized some extent of the damage done to my brain.  Hashimoto's Encephalopathy attacks the neurons of the brain.  I experience inflammation in the brain.  The inflammation initially caused convulsions, migraines, and then stroke like symptoms.  With high dose steroids, most of the damage was reversed.  It appears that prolonged inflammation in part of my brain that controls my kidney function has caused permanent damage.

I am optimistic though.  If my new medication works, it will relieve many of my symptoms and allow me to sleep at night.  This will remove some stress off my body and possibly slow the progression of my disease.  This is my prayer.  Due to some potentially serious side effects, they will start me out slowly with the medicine and monitor my labs closely.  The first night was great, but the second was less impressive.  I am praying this is just because my body is trying to adjust and will settle down.

Thank you all for your support, prayers, and walking this journey with me.