Friday, May 18, 2012

Brittney's Graduation

Another homeschooling family we know in central NL has a daughter 11 days older than Brittney. They wanted to do something to mark her graduation from "high school" and asked if we'd like to join in with them....which we did.

There are many things I like about homeschooling, but one allows each child to develop into who they are and doesn't push them in to being like everyone else. This was evidenced in many ways but really shone through with their choice of dress. Each had a very different style from the other and neither felt pressured to dress like the other one.

Here are some pictures. I took these with my phone and can't get the captions to line up with the pictures, but you'll see them as you scroll through them. The cake was really beautiful -- even had a cool pink grad cap on it!

Jake made a speech to his sister. I told him I had to read it first. He said he wasn't going to write it, just wing it as he went along and he wanted it to be funny. I responded with funny is ok, but not silly and reminded him that he didn't want to embarrass himself. He didn't miss a beat and came back with, "No, but I want to embarrass you." Sigh..... He didn't embarrass anyone though, it was a lovely speech to his sister. He did mention that he and Tyler were Brittney's brothers, but that Brittney liked him best (which drew a lot of laughs ha ha)

Lots of balloons. The other mother made the cap and gowns. All in all a nice night. Thanks guys for inviting us!

Click on the pictures to enlarge them

Brittney and Sara at home before...


Thursday, May 10, 2012

ME/CFS patients sicker than AIDS patients

This week leads up to May 12th, which is International ME/CFS & FM Awareness Day.

There was a rally on May 8th at Queen's Park, (Ontario's parliament) in which several Ontario gov't representatives spoke. So nice to see them stepping up to the plate!

The mayor of Toronto has declared May 12th to be Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day (Found Here) Again, nice to see!

Dr. Nancy Klimas, has said (she treats AIDs patients as well as ME/CFS patients) saying "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V" (interview here)

Dr. Alison Bested said the same thing (video below) about her patients.

I am proud of my country for the steps it has taken in ME/CFS/MCS acknowledgement, but more needs to be done. I'm not sure why it seems to lose something in the translation, but it just does.

For example, if someone were to say "My mother has Alzheimer's" reasonable people would not respond with, "Oh ya, I sometimes forget where I put my glasses so I know exactly what it's like. Your mother should just exercise more, or perhaps do things like crossword puzzles, to improve her memory. Forgetting things is just part of life and I have to deal with it, so she should too."

I have heard the extreme fatigue experienced by many ME/CFS sufferers being compared to the fatigue experienced by people with cancer. Reasonable people would not dare to suggest to the cancer patient, "You just need to get more exercise" or "I get tired too, it's just part of life" yet .... those are common statements to people with ME/CFS.

It is worse though, because the extreme exhaustion is only one small part of it. ME affects so many other systems in the body and produces a whole list of other problems... like this explanation: (taken from here at the website)

"Although its name trivializes the illness as little more than mere tiredness, chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), brings with it a constellation of debilitating symptoms.

CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period" and even more symptoms Additional symptoms are reported by people with CFS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures"

Video of Dr. Alison Bested speaking at Queen's Park Toronto Ontario Canada - May 2012