My Everest…

So now I need to make decisions…go to see a dr locally that has a 16 month wait and could retire anytime and be left without a Dr and wait for nothing.  Go see a Dr a bit further away 150km drive —1yr wait.  Or go see Dr 200km away. which is a bit of a drive and deal with traffic but see then in 4 months time but have access to all of the genetic research that is going on there. (My brain was like a computer with the little ‘processing’ circle.  It was stuck).  I told her to email me the info. However the one thing I did decide on right then and there was that I did want to participate in trials and most important to me I wanted my HD diagnosis masked in the medical system. That meant that ONLY the doctors that I told about my diagnosis would know and I asked each one of them to keep it off my files.  Now some would ask WHY ?  I have been judged by too many health professionals and Doctors by my illnesses.  The minute they see the words Chronic Pain and Central Sensitization they look at me as if I am a pill popper a druggie waiting to score.  The amount of times I come back from a urgent care or doctors office with “there is nothing wrong with you” diagnosis is frustrating and laughable.  To the point that when I say I am going to the Dr my husband pre-diagnosis me with that statement! If I were to add a Huntington’s diagnosis to the list I would never get anywhere with any of them! 

That being said, now I had to tell this news to my family. First my husband, whose call I avoided afterwards. I was actually at another appointment and I didn’t want to text him the result.  So when he came home I told him, we cried and, I gave him this option and I still tell him this.   Put on your running shoes and run away while you can just sign over some of your benefits .. they aren’t great but they are better than nothing so I will take them.  He is still here, he didn’t run!  Next I told my daughter and she was ok but it’s hard seeing mom have so much on her plate and now this.  But now she has her answer and she will go get tested. My son was stoic as I told him but he said he was going to live life and if he started to show signs then he would get tested.  That’s ok with me too.   I told my brother and he had a very hard time with it but nothing we can do. I cannot change the result. It’s the 50/50 lottery and I just lost again !   My mom took it the hardest she wanted to know why I didn’t tell her I was having the test etc… But as I predicted she wanted to take us all back and not have children.  My husband and I said “look at all the good you have around you”.  2 Kids, 6 Grand kids, 1 Great Grand Son  and all their significant others.  All she saw was 9 chances of HD being spread around. Don’t get me wrong, she loves us all dearly but she needs time to process this. I see her side and get that part too, but I would not take any part of my life back.  Hey, take away the pain. I’d be there but that might mean I’m dead so I don’t know!  

After I told my family and had a day or so to process, I realized that it was the first time in a long time that I felt lost and directionless.   After my call I had more questions than answers.  I looked up the HD society webpage and didn’t find the information I was looking for. The world wide web was vast but still could not point me in the right direction.  I was about to have a meltdown I needed HELP and no one was there to give it I felt like I was plopped in the middle of a huge ocean in a canoe without a paddle, what the hell was I supposed to do?  I picked up the phone and I called my physio left a message asking him to call.  He called me back in a timely manner and I told him about my situation and my canoe analogy.  He listened and ever so calmly said “ its ok send me an e-mail of what needs doing and we will start to carve out a paddle for your canoe.” That’s what we do every time I go to physio. We work on carving that paddle so that one day I can get to shore however far it maybe.