Sunday, June 3, 2012

Canine Partners for Life, the fist step

It all started with a  phone call from Meredith. She happened to be watching Diane Sawyer on ABC World News and saw that the upcoming story was on service dogs being trained for people who faint. I called my dad and we all watched it.

Canine Partners for Life has trainers that work with potential cardiac alert dogs. They detect the drop in BP that happens right before a person becomes symptomatic. They never mention what the young woman suffered from but it is clearly a type of dysautonomia, most likely Orthostatic Hypotention since all of the emphasis was on blood pressure and not heart rate. 

I called CPL and we spoke about my medical issues and symptoms and they sent an application packet. It took me almost a week to fill out the 8 pages of questions, have friends write reference letters (thanks Dawn and Meredith) and I had to write two essays. I have now written the check for the application fee and printed off 3 photos of me and my family as they requested, its all finished and will go out in the mail tomorrow. 

CPL will review my application and if they feel they can train a dog for me we will have a SKYPE interview to go over more details, I will submit the letter from my Neurologist and I will be paced on a wait list. Because I have a child with a dog allergy we have to wait longer than the average person, waiting for not only a poodle or poodle mix when they work mostly with retrievers but a poodle or poodle mix with a knack for cardiac alert. 

So we still have more steps to go but the first one is underway. I am very nervous and excited! 

Saturday, June 2, 2012

New diagnosis and telling friends...

So we are adding Orthostatic Hypotension (also called orthostatic intolerance, OI) to the list of my diagnosis. So now we have tallied up PVC, IST, POTS (new doc isn't 100 % on POTS) and OH. Saw a Neurologist and within one visit he was able to confirm the issue of OH but we are still at a loss as to what is causing me to have all of these autonomic issues. So I will start Florinef (Fludrocortisone) and pray that I don't hit every side effect along the way, like rapid weight gain... SERIOUSLY!?!? Sierra has been taking it for some time without any side effects so I am going to be hopeful.

The kids are all doing well, they know some of whats going on, Dysautonomia is an invisible chronic illness... until you start sweating profusely, get dizzy, have tremors and or pass out... so with that said it would be kind of hard to not talk to the kids about it. They have all seen some form of my episodes.

Even though I blog about it I have not told most of my friends. I am not really sure how, I mean they don't make a 'I just got diagnosed with a chronic illness but I still want to go to lunch' card. Maybe those who read it should send me a 'hey I saw you got diagnosed with a chronic illness want to go grab lunch' message! 

I don't know how to bring it up to casual friends, especially new friends that I would like to get to know better. I don't want to drop it too early and become some downer that people feel kind of sorry for but on the same note I don't want people to find out because we went to dinner, I stood up and pass out either. Hmmm advise on this one is welcomed...