Monday, November 24, 2014

Nothing a Little Pat on the Head Can't Cure.

MRI clear.  Should be jumping for joy right?  So why didn't I feel awesome hearing that?  Because we can't treat without answers, because thank goodness I don't have a tumor, but it doesn't mean that I am suddenly healthy or the dis-ease is going to just disappear because a photograph of my brain says it's not hiding there.  I'm getting frustrated.  I started feeling sick last January.  It's been almost a year and no diagnosis fits and I am only getting worse.  I got an appointment with a neurologist, who basically told me when I walked through the door, that he read my file, he's sure that I'm fine, he's usually right about these things.  Way to be objective Dr...  He asked me to list what was wrong after each symptom he interrupted me to tell me why or how that symptom could be "nothing".  I mentioned a family member who had developed involuntary movement then he diagnosed said family member right then and there (never having seen them or their tests and taking the description from a non-medical professional)  having a benign "tic" then told me that must be what I have because it runs in the family.  WHAT?!?  Worst part?  I went to see him on one of the best days I've had in months.  I told him that, that my symptoms were minimal, he jokes "Look, just having an appointment with me healed you" HAR fucking HAR buddy, may your jest keep me in light spirits while I miss yet another of my children's birthday parties because I'm in so much pain I'm bed ridden for the afternoon.  He was so busy interrupting me and telling me how fine I am that I didn't even get to tell him all of my symptoms.  His examination?  The same one my Nurse Practitioner did except he listened to my eye balls and he skipped a few things she did.  Then he goes on to talk about how surprised and impressed he was with her knowledge of examining for neurological disorders, I told him that Nurse practitioners can do almost the same amount of things that a GP can except they can't prescribe certain narcotics, but every other drug they can.  I said they simply refer patients when something is beyond their scope. The he says "Well if little Johnny has an ear infection, I guess they can just send him to the specialist." He also kept referring to sending my sleep specialist, Dr so and so, my new prescription. I told him that he needed to send it to My Nurse Practitioner. "Yeah, Yeah" he says, "I'll make sure she gets copies, So Dr. So and So will take you off that prescription and put you on this prescription okay?"  Me: "No, he will not, my Nurse Practitioner will, I will see her sooner." Him incredulous: "They can prescribe medication?" I wanted to bang my head off his desk.  I had just told him of the NP's experience and that they have to go back to university, however, he's made an assumption and he's usually right.  Ahem, but if you are the "expert" and people don't/can't go any further up then you then of course you are going to be right, there's no one to check it out and tell you you were wrong.  By the end of it he tells me it's probably stress.  I tell him no, I've lowered my stress levels and I'm feeling great emotionally.  So then he asks me if I've ever suffered from anxiety. I said yes in my early 20's for a year and for six months after my daughter was born.  Then he tilts his head and does that hand motion, you know the one that says: "Well, that's normal." At which point I had to tell him that it was by no means normal, it was extreme.  However, I was not feeling very stressed at the moment, I quit my stressful job and was enjoying my volunteer work.  My good days and bad days do not co-inside with times of low stress or high stress.  At the end of it all he tells me this: Your MRI is fine, it's just familial benign tremors, you need more iron, take it at night with vitamin C (the only new thing he taught me was to take the iron at night, I had been taking it in the morning) don't eat processed crap (anyone who knows our family knows I make almost all of our food from scratch and use honey and maple syrup in place of refined sugar) and get this: EXERCISE VIGOROUSLY.  He knows that I have fibromyalgia, tremors that cause my legs to give out from under me, dizziness and blackouts and he wants me to VIGOROUSLY EXERCISE.  Is he trying to kill me? Then he says he's going to get me an EKG or ECG or both for my heart, but he's sure that is fine too.  Oh great, if you're sure. "You're Fine" he smiles at me as we leave the exam room.  I can't walk without a cane because my tremors cause me to fall, my involuntary movements are so abrupt that they wake me in the night,  I have pissed my own bed, I have collapsed in the shower because I could not control my all over body shaking and 1 hour out in the cold leaves me bed ridden in pain for days. Yeah I'm in peak physical condition buddy.  In the end I felt like I got a pat on the head and should have been waiting for my lollipop at reception.  Speaking of reception, his receptionist was rude, not just then but when she called to book an appointment as well.  Needless to say I will be asking for a second opinion.  But I did get to see my mother and that made the trip to Toronto through the blizzard worthwhile.

Wednesday, November 5, 2014


So here's an update, it's been a while, as there has been much emotional turmoil over the last couple of months and I did not want to stir the pot because I was still really upset.  We have lost the support of some of Scott's family during my illness.  There have been accusations that I am only with him because I need his money to support me while I'm sick.  I am no longer hurt by these accusations because I know that they are coming from a place of negativity and fear and not reality.  My family has rallied around us, my mother drives from Mississauga to give us a hand or to watch the kiddos during my tests, Scott's father and step mother as well as uncle remain supportive and offer to watch the children for last-minute appointments and hospital visits. My sister, whom I had a falling out with a few years ago, called and has become a great listener and supporter during this time.   People are contacting me and Scott to offer any support they can, I find myself overwhelmed and tear-full at their generosity and genuine care.  Someone offered to exchange their MRI appointment with mine so that I could get mine sooner, it wasn't possible, but just the fact that she was willing to do that shows me the beauty and kindness that exists in this world.

The reality is this, I have developed tremors.  My tremors are the worst in my knees, they get so bad at times that I cannot walk, my cane barely holds me up.  I can no longer shower (even with assistance) because the tremor takes over my whole body, I lose the ability to control the majority of my muscles and I collapse.  I have begun to have involuntary movements or tics.  From small eye twitches to full out leg kicks. I am losing control of my body, quickly.

I went into the nurse practitioner's office and she called and pushed for a sooner MRI.  I went to the sleep specialist and he agreed an MRI must be moved up and promised to get me a closer appointment with a neurologist (mine was set for April).  So within 5 hours, between the two of them, I got an MRI the next morning and they are getting me an appointment with a Toronto neurologist.  For which I am grateful really, but knowing that I should be feeling relief, I'm feeling fear.  Things didn't seem so worrisome when we were taking our time, just checking things out.  Now we are rushing, there's this feeling of there not being enough time.

During my appointment with my RNP, she asked me: "What are your main concerns?"  I told her what I had told Scott while crying in his arms a few nights before: "I am scared that I am going to lose my ability to walk, already I am having a hard time.  The winter will come and  I will be stuck in the house, I have stairs up to my front door and a hill that will be impossible for me to get down.  I'm losing my freedom."

You see, I always thought that you lose what you take for granted, that it was the karma or the lesson that you were meant to learn in that life.  I felt so cheated, so angry because it wasn't fair. I never took walking for granted, I LOVE walking, running and swimming.  I didn't get my licence and I was happy to walk everywhere.  People would ask me which part of my body I liked best and I always said "My legs, they take me where ever I need to go."  I don't need this to be taken away to learn to cherish it, I already do.  I see now that I had programmed myself to believe in this pattern, I have forgotten that God/Universe works in mysterious ways that to my little human mind will still be perceived as chaos.

Yesterday they messed-up and I had to go in twice for the MRI, which is fine, mistakes happen.  We got to stop by Micheals and grab Solstice craft stuff, so no complaints there.  The Radiologist said they would get the info to my nurse practitioner today.  So now I get a horrible rush of butterflies every time the phone rings. I usually rely on my positive thinking to get me through times like this.  But here's the deal, if they find nothing it means that they don't know what's wrong and we can't start treating it.  If they find something, that means
there is something wrong...with my brain.  It's kind of a sensitive organ to be messing around with, being that it controls ummm.....everything.

So though I'm not necessarily believing in the idea of direct karma anymore, I still believe that every life experience has a lesson.  My current lesson is this: Learning to just let the future be.  I do not need to manipulate my emotions by thinking either negatively or positively about a possible outcome.  I shall feel what I feel when I feel it and be okay with that and let it pass.

Thanks for lending me your eyes and ears. I'll keep you updated.