My Everest…

Mr. Strong And Silent I had a family friend come by just to drop off something quickly the other day when things were still bubbling with the car situation and when she asked how I was. As I was trying to tell her that everything was fine I suddenly just burst into tears.  I tried to stop them from happening and well they just leaked out like a frickin broken faucet.  She thought I was crying because the kids were not going to be home for Christmas.  I explained that I am upset as I am feeling trapped because of the car situation and anxious about my upcoming appointment with the Doctor.  She listened, gave me a hug, we chatted about everything and everyone for a bit and I felt a bit better. A little bit calmer. Before she came I was actually laughing at 3 squirrels battling it out on the tree in the yard over a large slice of pizza.  Wondering how long “pizza wars” were going to last and who would win.  This is how fast the highs and the lows come. One minute you’re up and the next you are down.  Thought I had it under control…how very wrong I was! Oh well….win some lose some I guess.

Its the morning of my first Huntington’s Doctors appointment needless to say I’m nervous about everything!  Anxious, heck yeah!  I have no clue if the ticking time bomb of HD has decided to grace its presence on me and if today will be the day that I officially state to the world that I have HD!  Da da Da ! As we drive to the hospital, I nervously channel surf on the car stereo and purposely sing badly in the car to get some kind of a reaction out of my husband.  I know he’s feeling his feelings too for both of us, but he will never voice them as he is the master feeling internalizer.  Mr Strong and Silent hence why I will do ANYTHING (safe) to get a reaction from him.   I’m sure he’s thinking as to why I would pick the furthest Dr. away but he loves to drive so that’s not an issue for him.  I chose to go to this hospital and Dr. because I decided to opt in for the Enrol HD program, HD clinical trials, as well as having all the patient resources all in one spot.  They have access to the genetics lab, social worker, geneticists, psychiatrists, Huntingon Dr’s, and a bit more.  If you book your appointments in advance and you know who you want to see it is all there for you and you can do it all in one day, vs. at home we have a cutting edge movement specialist and he focuses on just the movement side of things and not the rest of it.  I learned this from people I met in the Huntington Society Chapter meeting.  I’m not just a pretty face, I do listen sometimes….even if it is through a mask of pain.  I digress…

At the hospital we registered and from the moment we arrived to the moment we left about 3.5 hrs later, it was go time!  I filled out questionnaires about my mood, anxiety, depression etc.   We went thru my family tree giving a very detailed yet totally anonymous version of it to the Enrol HD program, meds, modalities you name it, they wanted to know about it.  Timed Cognitive testing too OMG. I was ½ way through that and my brain was on fire! I told the lady that and she said we need to finish only a few more.  What’s the point? I can’t think! She asks me to name animals starting with the letter E…. I think Elephant, Elk, ummm Eagle, Emu and I drew a blank.  (Now I know how contestants on game shows feel like).  What’s a good visit to the Dr. without leaving some huge vials of your precious blood lying about?  Of course I did!  Now to the Dr. well he’s asking the same questions as the other side was i’m like wow!  It’s to keep confidentiality, anonymity.  I get it.   He does his testing but before that he states that he doesn’t see signs of active HD (breathe, breathe).  Hubby states it’s hard to tell with everything I do have going on if this is related to HD or just it’s own thing. Dr does his baseline exam and tells me to just keep trying to fight the pain and the migraines the best way I can and for now we will see him next year.  But for hubby to be watchful for things as it will be more evident to him than I of repetitiveness, movements etc.  We drive home in silence with the rain pouring outside, hubby needs to focus and I am too exhausted to even talk.  I think if I did say anything gibberish would come out.  The rest of the evening, spent relaxing.  The TV on just chilling.  Relieved that HD hasn’t yet darkened our doorstep, and we don’t need to start a more difficult climb on Everest.  

So for now we are just paddling canoes and climbing the easy parts of Everest.

The next day after our adventures of going to the Dr. wear off I pass along the information that I gathered to my brother as he still remains untested and I respect his decision.  But tell him that if he chooses to get tested then I have found a good Dr. and clinic that he could go to.  I even joked that if he tested positive for HD we could have family bonding time and drive to the clinic together.  He looks like he might have symptoms but it’s beyond my control. I need to focus on my journey and if his path comes to align with mine then I will be there to assist, no questions asked.