Wednesday, June 1, 2016

Day 21 - At the FAR Clinic

Its clear we are making the most of the treatments before I go home because it is taking every ounce of what I have to keep going.  I have lost most of my strength and balance and my energy is at an all time low. But I am not skipping a step along the way...its not pretty but I'm getting the job done.

As much as my oxygen improved yesterday, it is bad today.  My heart rate is all over the place and I am fighting a fever.  All good signs that my body is fighting and is reacting well to treatment.  But wow, its taking a toll.  Only 2 days left.  So no point stopping now.  Should be interesting to see what I am like in a few days lol.

I was asked today to describe what treatment is like and how much it would impact someone from living their normal life.  There is something about this disease and the treatment is the same in that its just impossible to explain any part of it in a short conversation.  No two days are the same and as soon as you think something is consistent, it changes.  I think that is the single biggest reason why we are not getting any help.  So to tell someone how hard or easy this process is, is impossible.  But I just know however hard it is, it is worth every effort to regain a sense of who I was.  I can't wait.

There is a great notice on the FAR Clinic Facebook page from a person who has experienced a great recovery.  She reports great results with cognition and that gives me much promise.  My head symptoms are at an all time high these days, so I can only believe the battle is going on up there and knocking the bastards down.  I am dizzy all the time (yes, more than normal lol) and my balance is bad.  My head fog feels more like brain smog that includes a bad haze over my eyes and affects my eyesight.  And of course, why not throw in headaches too.  And I can only be ecstatic that I am feeling this before I leave.  I can only hope that this means the return of my short term memory.

I expect things to only get worse for the next two days and will likely feel the consequences for more than a week.  My updates may be short or limited.  Just know its all going well and I have made a conscious choice to go hard before I am done.  The sicker I am right now the more we have accomplished.  No pain, no gain has always been my motto and no time like the present to pull that one out.

UPDATE: still no response from my "Letter to my Canadian Medical Clinic"

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