A Few Items For MS

In this great Etsy shop, there are currently three items for sale with profit to MS - directly to my MS Walk Team - Em's Slackers. There are other items in the shop as well, in which the proceeds go to a different charity.

The Scribble Shop Em's Slackers MS Section

I created and donated the brass necklace.

rotten - medium - fantastic

On a scale of Rotten to Fantastic...

I would be happy with more "medium" days.

Thank you.

Emily

11:30 p.m. Musing

"Life takes a lot of twists and turns. The best compass to follow is your gut". Emily

Another Leg Injection

Ha Ha Rebif! I fooled you...or I'm getting used to you in the leg.

I decided to not completely "drop" my thigh from injection rotation. Instead, I applied a topical freezing (xylocaine)to the area (3" x 3"), twenty minutes before the "event". I have had this tube of ointment since my "Copaxone Injection Days"...it didn't work for the Copaxone, so I didn't expect it to make a difference with the Rebif.

Anyhoo - it went okay. The experience was considerably better than any other leg injection I have done...not as good as my arm...but bearable.

In other news - today was the last day off MS Aquafit until October. The aquafit itself was uneventful - BUT - I did have a moment in the pool where I felt FOG FREE. My brain felt clear...unfuzzy...I haven't felt like that in weeks, possibly even months.

What a good day.

Emily

Side Effect, Darn It

I may have jumped the gun when I said that everything was okay regarding the Rebif 44 dosage, and any side effects. Not that things aren't "okay", I'm just a bit more uncomfortable on P.I.D. days. It took all of last week's injections, and a jump out of the state of denial* I was in to discover the new side effect.

*denial being that there had been no change when doubling the dosage.

On Monday's, Wednesday's and Friday's (P.I.D. days) I feel like I'm going to throw up AND I have a crushing headache.

I have already been dealing with nausea, but now my body is experiencing the physiological symptoms of vomiting: my saliva gets hot, my cheeks tingle, my stomach churns, and I start a trek to the toilet. For nothing.

Emily

Regarding injecting my thigh - I was surprised to learn of the "inject where the seam of your pants would lie". And - if you have "saddle bags", all the better! Alas, this isn't working for me. But last night was an arm - and it was GREAT! Quick, painless...

My latest thoughts on CCSVI

There is so much going on in the world of CCSVI. And I haven't been able to keep on top of it. Concentration is one of the first things to diminish with my fatigue, and without it, I don't read much of what I see on the computer.

Everyday, my Facebook news feed is filled with videos of people who have been "Liberated" or are going to be "Liberated" - from all over the world. Every once in awhile something sticks in my brain, as I scroll though the "news" - including two Canadians (one person from each coast) who are considering filing human rights complaints over the lack of "Liberation" in Canada.

So what has me thinking of CCSVI...

Can you imagine having Primary Progressive Multiple Sclerosis, the type of MS without relapses or remissions. It runs a course that can not be altered or slowed by any medication. The annual trip to the MS Clinic only brings about negativity and disappointment: the doctor wants you to know that there is nothing he can do for you...

And as for CCSVI - it isn't scientifically proven.

Emily

negatives

Hot hot hot. It's 15 degrees (and overcast) today, and I am HOT. My internal thermostat is whacked. Broken. Misfiring. Screwing with my happiness and comfort.

My face is covered in beads of perspiration. I radiate heat.

And to top it off, I think that the 44mcg of Rebif is creating more/greater nausea on my P.I.D days. And more headaches.

And my left leg is uncomfortable: it feels like a stretched elastic - and every once in awhile (okay, every five minutes) it releases, somewhere in my leg.

Did I mention that I'm still dealing with a rough run of fatigue?

These are tough times.

Last week, and I think even for a couple of days the week before, I napped every day. But I still pushed through - trying to be "productive" everyday. So far, since Sunday, I have done pretty much NOTHING. I don't even have the desire to be "productive".

For a change, I'm not fighting with myself to "do" something.

Emily

Oh yes, and here is a Rebismart update. I can no longer handle the pain associated with injecting the Rebif in my thigh. I've tried an icepack prior to the injection, and maybe in a couple of weeks I'll try heat. But for now, I have dropped my thighs. I'm in no frame of mind or physical space to put myself through any more pain than necessary.

STOP.

Word in the house, is that I am NOT the little pink bunny who never quits...sometimes, I need to recharge - whether I like it or not.

I need to respect my limits - when I'm tired, or feel like I should stop what I'm doing and lay down - I need to do it...don't push it...no more "just one more minute".

But it's so frustrating!

Everyday this happens: I hit a point in my day, no matter what I am doing, that I need to stop and recharge.

This past winter, I learned the importance of scheduling my week...day by day...hour to hour. This includes scheduling rest.

I have to get back in to the routine of doing this...I am exhausted...I need to make changes. Help myself.

Emily