The switch from 22 micrograms of Rebif to 44 micrograms of Rebif was...uneventful. woohoo! If anything, the burning sensation during the injection has continued to improve/lessen. And, my P.I.D. experience was in the normal to average range!
Nothing new to report or experience on the injection front!
Injection number 2 at 44 coming up tomorrow!
Emily
Uh Oh, I'm Complaining
Posted in fatigue, P.I.D. on by
Today is a traditional P.I.D. day for me...possibly accelerated by being over-fatigued. I don't know if over-fatigued is an actual condition, but this now how I will, from here on in, refer to day's like today. I haven't been able to control my "I have to be doing something to be valuable" tendencies, and now I'm paying for it. I'm cranky, achy, angry, sad, frustrated...
Determination, a stubborn personality, adrenalin, and stupidity have gotten me this far...and have now sucker punched me.
I'm angry with myself, I'm angry with my situation.
I'm achy...because it's a P.I.D. day (for tomorrow's injection, I get my first 44mcg dose).
I'm sad because I don't have the physical or mental energy to do things...and I'm sad because I can't believe that my life is like this.
I have all but given up on house cleaning. I seem to be able to spend my time on one thing...my bead hobby - and nothing else. If I was cleaning the house, I wouldn't have enough energy for my hobby...I don't imagine that would make me feel any different than I do now. Today, and for the past few days, I'm not even spending time with my beads. I did go to aquafit yesterday, and I will admit that I had to push myself to go.
And don't get me started on eating and exercise! I have less than three months to "fix" my triglycerides...I'm not off to a good start. I don't have the energy to 1) assemble a meal 2) do a thorough and healthy grocery shop 3) make a meal plan 4) eat much more than ice cream or cereal...soft and easy foods for me.
And where is Jason in all of this? Apparently, I'm not supposed to rely on him for healthy eating. So he is in the driver's seat of the car...taking us to the restaurant. He has had his own troubles for the past while...
But I broke it to him the other day...and reiterated it today...I need to be carried. I feel as if I have been carrying us for some time...and I'm tired.
Emily
Determination, a stubborn personality, adrenalin, and stupidity have gotten me this far...and have now sucker punched me.
I'm angry with myself, I'm angry with my situation.
I'm achy...because it's a P.I.D. day (for tomorrow's injection, I get my first 44mcg dose).
I'm sad because I don't have the physical or mental energy to do things...and I'm sad because I can't believe that my life is like this.
I have all but given up on house cleaning. I seem to be able to spend my time on one thing...my bead hobby - and nothing else. If I was cleaning the house, I wouldn't have enough energy for my hobby...I don't imagine that would make me feel any different than I do now. Today, and for the past few days, I'm not even spending time with my beads. I did go to aquafit yesterday, and I will admit that I had to push myself to go.
And don't get me started on eating and exercise! I have less than three months to "fix" my triglycerides...I'm not off to a good start. I don't have the energy to 1) assemble a meal 2) do a thorough and healthy grocery shop 3) make a meal plan 4) eat much more than ice cream or cereal...soft and easy foods for me.
And where is Jason in all of this? Apparently, I'm not supposed to rely on him for healthy eating. So he is in the driver's seat of the car...taking us to the restaurant. He has had his own troubles for the past while...
But I broke it to him the other day...and reiterated it today...I need to be carried. I feel as if I have been carrying us for some time...and I'm tired.
Emily
Oh the Twitching!
Posted in twitches on by
Oh, my legs. My flippy, floppy, twitchy legs. And now that the weather is changing, and the sun is hotter, my trusty heating pad is no longer going to be a wanted partner in my bed!
For months, I have slept with a heating pad under my calves. I find that without the heat, my twitches are worse. When the twitching is real bad, I lay on my side, and wrap the heating pad between and around my calves, twisting around so that is is tight on my legs: the combination of heat and binding helps to control things.
But now...dear legs...your season of twitches must come to an end....please.
Emily
For months, I have slept with a heating pad under my calves. I find that without the heat, my twitches are worse. When the twitching is real bad, I lay on my side, and wrap the heating pad between and around my calves, twisting around so that is is tight on my legs: the combination of heat and binding helps to control things.
But now...dear legs...your season of twitches must come to an end....please.
Emily
The Liberation Procedure
Posted in on by
I try not to allow these "Bits" to be overly controversial. I want to be informative, helpful, inspiring, and a "bit" funny.
But as I sit here, reading how the radiologist who performed the "liberation" procedure in a Vancouver hospital is now in hot water, I can't help but think...
Professionals who perform the Liberation procedure are "Assisting Living"... not "Assisting Suicide".
So why is the Liberation Procedure illegal in Canada?
"Liberation" is sought because it increases the quality of life of a person living with MS.
Temporary or permanent, we do not know, but to be able to live outside of the "fog", outside of the "fatigue", to feel your limbs, or potentially walk unassisted for even a short amount of time is within our reach...and would be a dream come true.
Emily
*20 of the 93 "suicides" engineered by Dr. Kevorkian were people living with Multiple Sclerosis
But as I sit here, reading how the radiologist who performed the "liberation" procedure in a Vancouver hospital is now in hot water, I can't help but think...
Professionals who perform the Liberation procedure are "Assisting Living"... not "Assisting Suicide".
So why is the Liberation Procedure illegal in Canada?
"Liberation" is sought because it increases the quality of life of a person living with MS.
Temporary or permanent, we do not know, but to be able to live outside of the "fog", outside of the "fatigue", to feel your limbs, or potentially walk unassisted for even a short amount of time is within our reach...and would be a dream come true.
Emily
*20 of the 93 "suicides" engineered by Dr. Kevorkian were people living with Multiple Sclerosis
CCSVI Rally
Posted in CCSVI, energy, MS Society on by
Today has been a down day. Lots of time spent in my bed, in my most relaxed and least energy consuming position. What is such a position...and I'm not alone in recognizing this, as I have recently discovered...no clothes, on my stomach, arms spread wide. Wearing clothes uses energy. And lately, I have spent my energy on other things, rendering clothing optional.
Yesterday afternoon, I attended a CCSVI rally at the Manitoba Legislative building. Accompanied by Jason, C-Dazzle, and Jay, I stood in front of the grand building, with more than 100 other Manitobans. CCSVI Manitoba is one of many grass roots organizations sprouting up in Canada, working for the common goal of making Chronic Cerebral Spinal Venous Insufficiency testing and Liberation available (legally) in Canada. Instead of being treated here, Canadians are traveling to India, Poland, Kuwait, and Egypt for the procedure.
Manitoba wasn't the only province or city holding a rally yesterday. And MS sufferers weren't the only ones acting on behalf of CCSVI: The MS Society of Canada took action yesterday as well, announcing that they will be asking the federal government to earmark $10 million for CCSVI research.
At the rally, we raised signs (when not warming our hands in our jackets!) and listened to a handful of speakers including: Duncan, who was "Liberated" in Poland; Jennifer, who's husband is quickly deteriorating from MS, and has had a positive MRV (strictured and collapsed jugular veins); and Manitoba's Health Minister. The common message, directed to doctors, politicians, and those with the power is this:
Yesterday afternoon, I attended a CCSVI rally at the Manitoba Legislative building. Accompanied by Jason, C-Dazzle, and Jay, I stood in front of the grand building, with more than 100 other Manitobans. CCSVI Manitoba is one of many grass roots organizations sprouting up in Canada, working for the common goal of making Chronic Cerebral Spinal Venous Insufficiency testing and Liberation available (legally) in Canada. Instead of being treated here, Canadians are traveling to India, Poland, Kuwait, and Egypt for the procedure.
Manitoba wasn't the only province or city holding a rally yesterday. And MS sufferers weren't the only ones acting on behalf of CCSVI: The MS Society of Canada took action yesterday as well, announcing that they will be asking the federal government to earmark $10 million for CCSVI research.
At the rally, we raised signs (when not warming our hands in our jackets!) and listened to a handful of speakers including: Duncan, who was "Liberated" in Poland; Jennifer, who's husband is quickly deteriorating from MS, and has had a positive MRV (strictured and collapsed jugular veins); and Manitoba's Health Minister. The common message, directed to doctors, politicians, and those with the power is this:
Remove MS from the equation, and treat people for CCSVI.
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