Not updating this any more

Please refer to my new blog

www.liberationbulgaria.blogspot.com :)

see my new blog...

Travels to Bulgaria will be replacing this one :)

what I know is not right with me...

1. 74/84 scale primary MS Fatigue - ugh... if the Liberation gives me only one benefit, I hope it is reducing the fatigue
2. Brain fog
3. difficulty absorbing information - I'm ok once it is in at retrieving it (though a bit slow) this is likely why I haven't been able to
concentrate to read books
4. numb stripe down the outside of my left calf
5. numb stripe on left side of face from my chin to my lower left nostril
6. trouble focusing my eyes
7. sensitivity to heat - legs turn into wet cement & the fatigue is quadrupled
8. trouble walking heel/toe (though my physio lady is working with me on that - need to have a wall beside me or my cane so I
don't tip over - realize that's why I've been walking without bending my ankles for so long... helps me balance!
9. trouble retrieving words
10. standing at the sink to wash dishes - overheat, fatigue, unco-ordination
11. unable to clean the bathtub/shower in one day - I pick away at it
12. unable to ride my bicycle
13. unable to rollerblade (this may be attributable to something other than MS... we'll see! LO)
14. unable to ski due to helmet - overheat, legs fail... you know the drill...
15. no edit button when I'm tired - swear more, no tolerance though the new bf helped a lot :)!
16. arms shake when I'm hot or really fatigued
17. grip strength is the sh*ts... getting a bit better with the creepy gel silly putty stuff I got from my OT! (Thanks Erin - you
ROCK!
18. Too tired to cook, so I'm eating take out which is bad... or I just eat salad with no protein
..... too tired... I took all day to get to 18.... I'll add tomorrow... :)
Nap time

IT'S REAL NOW!!!

Just got confirmation of my flights... Calgary to Frankfurt; Frankfurt to Sofia.... YAY

Also got confirmation of the hotel...

29 more sleeps :)

keeping track...

2:05 dad just drove me home... I'm so tired I can hardly move
I am super fatiguted & going to have a nap now
I didn't go grocery shopping or take my bottles to the depot due to fatigue

Keeping track...

10:20 am... boy am I weak... too tired to have a shower today - have to take my recycling to the depot before it takes over my condo! 2 bags - will carry those to the car on my way.
Taking the car back to dad's & he'll drive me home - I'll put a load of laundry in before I leave - hopefully I'll have the strength to put it in the dryer when I get back...
My arms are super weak, I'm dizzy & having trouble focusing & I'm really shaky.
the grocery shopping will have to wait for another day

keeping track...

so out for lunch yesterday - was out for a total of 3.5 hours including transportation time... my friend drove us to the Saskatoon Berry Farm just south of Calgary - we went to the restaurant - ate - walked around the store (me with cane in hand - thank God - really tippy). Couldn't go in the greenhouse - too hot & didn't need to overheat on top of how fatigued I was already!

I was so exhausted when I got home, I lay down on the couch, turned on the TV & woke up 4.5 hours later! Thanks Bill for texting me :) otherwise I'd still be asleep!
I woke up, made bacon & eggs (quickest thing I had) lay back down on the couch & proceeded to fall asleep again! Woke up a couple of hours later & went to bed & slept 7.5 hours.... still tired when I woke up

This is f*cking ridiculous! The fatigue is kicking my ass! I am doing everything right - MS diet, MS vitamins/minerals/supplements, resting - what the f*ck is going on? Is the MS getting worse? I need liberation NOW! F*ck I wish they'd call me to make an appointment! My friend is in Bulgaria as I type having the procedure done - all the best my friend and I hope it does wonders for you :)

keeping track...

wow... 3 1/2 hours out & I'm done.... I am so exhausted & all we did was eat lunch, chat & look around a store This is friggin' crazy - why am I so exhausted? I can barely walk & was really glad I had the cane with me
I'm off to couch nap for ???? hours...

keeping track...

almost time to go for lunch... I'm so tired , hope this doesn't set me back....

keeping track...

10:25
still dizzy & shaky - but... I got 2 loads of laundry washed - 1 is in the dryer & the other one is waiting to go in
My girlfriends are taking me out for lunch! I'm taking the cane so I don't fall over - frig I'm tippy today! This means that I'll be tired this aft - so nap & hopefully, get the chicken stock made tonight so I can make soup tomorrow.... give me strength please!

Also - got another lead for CCSVI treatment - sent them an email.... fingers crossed xo

Keeping track...

8:05
Another 10 hour sleep - still super fatigued & really dizzy this morning :(
I started the higher dose estrogen bc pill today -hopefully that helps somewhat with the MS symptoms I am having - TIME WILL TELL! If this doesn't work, my doctor said she'd consider me trying LDN
I have to do some laundry today! I'm running out of clothes! I'm not doing anything else all day & I have nothing planned for tomorrow - so I'll exhaust myself & pay for it tomorrow... no alternative!
I didn't get my soup made yesterday because I was way too tired to chop veg & fuss with soup making - my veg should be ok for a couple of days & I'll make it on Tueesday (or monday if I am able)
My arms are shaking & I'm very dizzy - have to stop typing because it's making me feel sick looking at the screen

Keeping track...

3:45
HOLY CRAP - just woke up from a nap - fell asleep after I ate lunch
I still have no energy & am foggy & dizzy. what the hell is going on? this is crazy!
Ate a tim of tuna with curry powder, dijon & pickles to get some protein energy - didn't really do much
no energy to get anything done around the condo - going to lie down for a while - this sucks :(

keeping track...

11:50
skipped having a shower... started to drive to the farmers market & decided to just go to Safeway - not enough energy. Thank God I brought the cane with me - I am pretty dizzy today & tired, so I was glad to have it.
Left the groceries in the trunk of the car until after I have a nap as I just don't have the strength/energy to carry them to the elevator from the car - I'll go back down to get them after I eat lunch & have a nap

Keeping track...

9:25 I've been up for an hour after a 10 hour sleep - still super fatigued. I'm dizzy & not stable walking - I was going to go to the farmers market to get vegetables to make soup - will take the cane with me... see how much energy I have after a shower - need to wash dishes before I make soup - so have to factor that in too...
Dinner last night was lovely - Bill makes a mean jambalaya! YUM! We just stayed in and watched Sherlock Holmes - it was even better watching it again - love the cinematography!
I'm off to have a shower & see what the energy is like apres shower!

keeping track...

4:30
wow... so fatigued that when I was walking from the train up to my chiropractor, I could hardly walk when I got to the strip-mall. It was really frightening... so bad, I bought a cane at London Drugs to continue on to my chiro's office around the corner. My balance is really off - I did some vestibular exercises & it helped for a few minutes - my dad is freaking out when he saw me with the cane - I just need the extra security for balance & leaning on it.... :(

keeping track...

11:45
just got out of the shower. Really glad that Erin, my occupational therapist called Aids to Daily Living for me & got me some safety bars for my bathroom & a bathtub seat - really needed it today! So bloody tired, I can't raise my arms to blow dry my hair - guess it's another pony tail day if the fingers will work!
The fatigue is super kicking my ass today - I don't understand why when I am doing EVERYTHING I can to get better - clean diet, proper vitamins/supplements, lots of sleep... perhaps it's because I'm too fatigued to work out? I did my physio vestibular exercises today - still a bit dizzy, but better after them than before
I have to save energy to get to chiro... at least it's only a shortish walk from the train to the chiro's office!

Keeping track...

10:10 a.m.
Had a kale smoothie mix in the freezer & had that for breakfast
I am having trouble walking - super jerky & my insides are like I am plugged into an electrical outlet - - all wired up & jerky! Sucks so much - can't stand at the sink to wash the dishes.... tried to empty the dishwasher but was too shaky & dropped a glass - it's still on the floor because I am too jerky to maneuover the vacuum right now - why is this happening to me? fuck I hate ms

Keeping track...

8:16
Went to sleep at 10 p.m. just got up - feel almost as fatigued now as when I went to bed - I'm dizzy, my legs are heavy. Arms are still really weak & I'm leaning heavily on the table as I type this.
I'm dizzy - so will do my vestibular exercises once i'm finished this
I have to go to the chiropractor today - 1 hour trip there - dad will pick me up - we car share on the weekend, so I will drive myself home after going to Safeway for groceries and I have to remember to pick up my Copaxone prescription on the way home too
Tonight my guy is cooking me dinner so I don't have to worry about that other than making a green salad to take with me. We are just going to take it easy - have dinner & watch a movie at home - YAY

keeping track...

5:35 p.m.
woke up from another nap...
too tired to walk to Safeway, so it's pan fried shrimp with some fiddleheads... not what I had planned, but beggars can't be choosers
Hope I feel better tomorrow - have to go to the chiropractor & get some groceries
I would give anything to get rid of this fatigue - it's awful!

Keeping track...

3:36 p.m.
Just woke up from a 2 hour nap - don't really feel any more energized than when I lay down... fairly typical. I have to figure out what I want for dinner... no salad left, no soup left... I have a piece of salmon which doesn't take long to broil & I'll put some quinoa on now so it's ready in 40 minutes or so... steam some fiddleheads too - yum!
I'm going to lie down for a bit longer because I'm still sooooo exhausted I can hardly keep my eyes open

Keeping track...

1:27 pm... been home for about 15 minutes
I was too fatigued after lunch to walk the 2 blocks to Shopper's Drug...
On here tracking my day to show the disability co what it's like... I'm going to have a nap now
My hands are too weak to type more.

Keeping track...

Had another 10.5 hour sleep.... woke up & I'm just as fatigued as when I went to bed :(
Too tired to shower today -had one yesterday & it's raining out - so everyone will have bad hair today!
I got up at 8:45 & poured a bowl of cereal & cut up a banana into it
Sat down & ate, took my vitamins
My arms are really weak & heavy today - having to lean on the table while typing & I can feel my hands getting weaker with every stroke... I sure hope physio can help me with my arms & my hips (the aleve just aren't cutting the pain right now) - we were just concentrating on vestibular stuff last week... it's pretty cool, but exhausting!
I'm having lunch today with my friend Jenn... she works across the street from my condo & the restaurant is 1/2 a block away! yay... I have to walk up to Shopper's Drug after lunch - need TP! It's only another 2 blocks further. It's raining & 8 degrees, so at least the heat won't contribute to fatigue today!
Erin at OT called me - they had the "meeting"... I have another week's reprieve - we are going to speak to Patty at the disability co again next week while I'm at OT... Patty wants a detailed description of how fatigue affects me... I'll direct her to this blog & also write down some things so I don't forget to tell her (MS brain fog!)
I'm also going to take pictures of the piles of laundry & general state of my condo that I just don't have the energy to undertake! If only she'd understand that I used to be a total neat freak & was super organized! Wow... I can't even remember being like that it's been so long....
I've always said I wished I'd break out in purple spots when I'm fatigued so that people could see that I truly am sick & it's not like normal fatigue - you can cure that with sleep.....

Keeping track...

Here's a bit of reality.... this may be a little random as the primary fatigue is kicking my ass today...

Wow, yesterday included 16 hours combined napping/sleeping after going for my 2 hour OT/physio session. This also takes 3 hours travel time to/from physio... that adds up to 21 hours... (NOTE: the sleeping/napping is not voluntary - my body cannot function & it basically shuts down forcing me to sleep that long - I didn't even have my white noise machine on last night & I live on a very noisy & busy street - I slept for 11.5 hours without waking up!)

I chatted to my OT about primary MS fatigue & it's difference from secondary fatigue (which non-MS people have when they overextend themselves & can fix by sleeping - God I wish I could be tired like that) and we chatted about primary MS fatigue & its management - I am already doing everything I can! hmm... that sucks - I was hoping for some new "miracle"

I met with the physiotherapist - that was awesome - she introduced me to Vestibular Rehabilitation for the dizziness - baby steps, but I'm doing my homework & can't wait to see her again next week :) I have to get some help with the painful MS hip situation... the weakness in my arms is really bad right now too...

It takes approx 15 minutes to blend my kale smoothie (NOTE: I pre-bag & freeze portions which takes me 2 hours to do this one day a week) - almost out of those - so that's something I'll have to do this weekend

I warmed up some home-made soup for lunch - 10 minutes to prepare (NOTE: I make a batch once a week - prep takes me about 1.5 hours - you have to cut slowly when your arms are spasming - it cooks for 3 hours - I usually nap during this due to the fatigue from all that chopping & set an alarm in case I don't wake up - when this is done, add more delicate veggies & it cooks for 1 hour longer - I'll hopefully have some strength to throw in a load of laundry during this hour - but always set an alarm in case I sleep past it)

I made a chopped salad Monday - that took 2 hours & keeps in the fridge for 3 days. {only one small slice this week on my thumb due to a rogue avocado pit)

I woke up from napping and was still experiencing primary fatigue - warmed up some more soup for dinner - now I'm 2 days behind on soup - so I won't have any for the rest of the week... uh oh - no pre-made food left - now I have to set aside energy to cook or spend $$ I don't have to eat at the Vietnamese restaurant near me. I had some chopped salad too - 1 day serving of that left & I have salmon I can broil for dinner tomorrow.

The physio/OT skills I'm learning are supposed to get me to a point where I'll have a bit more energy for working... sure hope so. All this limping around, dizziness, brain fog, weak arms makes the fatigue worse because your body has to work that much harder to send the messages to be able to walk or move your arm or balance or get up off the couch, or get up out of bed... IT SUCKS!

They want me to work 4 hours/day 5 days/week.... this takes at least 1.5 hours travel time plus at least 1 hour to shower/dress - no throwing on a pair of sweatpants & a tshirt with my dirty hair in a pony tail!

Again, I pray that my phone rings TODAY! please, please, please.... I just want to stop the progression & hope to get some of the incidental side effects! :)

The "powers-that-be" were supposed to meet today, but that has been moved to tomorrow.... I have a reprieve of not having to work this week - thank God - because I truly do not know how I would get myself there let alone function at any level once there in the state I"m in right now!

It really pisses me off that it has come down to the wire like this! Why didn't the MS Clinic put me on the list for Optimus (ot & physio) back in September when this all started? I've been doing everything I knew had worked in the past to get me well after an attack and had the support of all of my doctors that I was doing the right thing & would get better in due course... it just isn't working this time... now that I'm finally in Optimus - please let me learn the new skills I need to get me back to work healthily and not be forced onto CPP/disability ..... it's truly terrifying!

keeping track...

long day!
Went for occupational therapy - awesome meeting - Erin actually UNDERSTANDS MS fatigue!
Went to the physiotherapist - great session - we tried some vestibular rehab to alleviate the dizziness - I have homework to do, but found it is helping a bit, so hopefully with further sessions/training, the vertigo will lessen
I was EXHAUSTED when I got home... had to move the couple of boxes & my bicycle from my parking stall due to the parkade cleaning tomorrow - ugh! Crashed once this was done - thank God for my "old-lady" shopping cart LOL
Napped out for 3 hours after this
just warmed up some soup & eating that - will be an awfully early night tonight.... o - the meeting with the "powers-that=be" has been moved to Thursday ... still not phone call yet either - but I know OT & physio is going to help me - so I am hopeful that my company will listen to reason - it's in their best interest to get me healthy :)
Night all...
T
a little more hopeful today :)

Keeping track...

Tuesday - survived a quiet QUIET weekend... too fatigued to do much of anything - sat around with friends Saturday night, watched tv Sunday, got one load of laundry washed & hung up to dry - it's not put away yet... (woo hoo - only 15 more to go) :(

I have occupational therapy & physio today... I am so fatigued, I am having trouble typing due to my arms being so fatigued, I'm dizzy & my legs are weak! I have to travel downtown, take the train to North Hill Mall, catch a bus to Foothills Hospital & walk almost the full length of the hospital from the bus stop to the MS Optimus clinic in the Tom Baker Cancer Centre end of the hospital do 1 hour of OT & 1 hour of physio - then walk back to the bus stop and reverse reoeat to get home - yippee.... guess that' all I'm doing today
I'm really really really hoping that the powers that be GET that I won't be able to work, do physio/rehab and not get sicker! Let me have my 6-8 weeks of rehab/physio to prep me for work! For God's sake, I had to wait months to get into the program & now that I have, let me use it to my (and ultimately work's) advantage!
Can't type any more...
T
xo

Keeping track...

8:55... WOW did I sleep a long time. Went to bed just after 10 last night
I'm shaky this morning & still fatigued. Took a few minutes to get my eyes focused
Home Health woke me up calling to let me know they can install my bars this a.m. at 10:30 - good service!
Have to wash the tub walls before the installation...

Keeping track...

10 pm... just woke up on the couch... wow
Ate dinner, started watching tv & just woke up again - estimate I've been asleep for 1.5 hours. I'm just exhausted but I thought I'd write it down since I'm documenting a day in my life right now...
I'm going to have a glass of water & go to bed. I'm pretty sure I'll sleep through the night! I'm not setting an alarm as I have nothing planned for tomorrow except healing & hopefully having some energy to clean my kitchen!

Keeping track...

7 p.m.
wow... just woke up
A summary of my day
woke up at 6:30 as I said in my prior blog
At 10 a.m., Aids for Daily Living came to my condo to assess my bathroom for safety handrails and a bath chair. the lady put masking tape on my walls where the 24" rail & the 18"rail need to go for my safety due to balance & dizzyness issues due to MS (oh wait, THE DISABILITY CO says I'm not sick... hmm). she assessed me entering the tub, how I normally get in/out for both showers & baths & also recommended that I get a bath chair which telescopes up/down to make it easier for me (but oh wait, "THE DISABILITY CO" says I'm not sick...)
We filled out the paperwork and determined that I qualify for assistance & will only have to pay about $80 for the installation which should be next week.
This took about 20 minutes.
I had to leave to meet with my boss once I finished this. Note that I did have a shower this morning, air dried my hair due to my arms being very shaky & I was unable to blow dry my hair or put on makeup due to weakness in both arms. I have had tremors in my arms all day too. This is a new symptom over the last week - is it stress related perhaps? Just what I need - physical symptoms on top of the fatigue & resulting brain fog... but oh wait, THE DISABILITY CO says I'm not sick...
Caught the bus & got off at Suncor (across from the Lougheed building on 6th & 1st street sw. Walked south on 1st street to The Bay. stopped in at the Bay to purchase some "sockets" to wear. Put those on & walked from the Bay on 8th Ave 1st st SW to my office on 11 Ave & 3rd Street ,
Took the elevator to reception on the 3rd floor because I needed to go to the bathroom & had forgotton the code... spoke to Linda for a minute & proceeded to use the elevator to go to the 4 th floor because I was too weak to walk up the stairs.
Chatted with my boss, she noticed that I was not myself! But oh wait, THE DISABILITY CO says I'm not sick... we chatted and she advised the accommodations which would be taken to help me in my return to work. A few of my colleagues stopped me to say hi & that they were glad to see me - once speaking to me for a few moments, they all commented at the fact that they thought I was crazy to come back to work noticing the struggle I was having with walking, thinking, expressing myself - but oh wait, THE DISABILITY CO says I'm not sick.
My boss indicated that they expected me to come back to work next week for 4 hours on Wednesday. As I was leaving the office at approx 12:15, I received a phone call from my Occupational Therapist - she advised that my companie's HR person at head office had arranged with her to have a conference call with SunLife, herself & my OT & I'm not positive on this, but I believe my MS Clinic neurologist will be in attendance too. She advised that the HO HR rep had said that I don't have to go back until May 31 - but they had not yet advised our Calgary office as my leader had not heard about this. I went over to my leader's office but she was not there - so left her a voicemail to advise that I would NOT be in next week and pending an alternate decision from the powwow meeting, would be back Monday May 31/2010. It's funny, but my leader and another team leader with whom I heard the phrase I've heard for years - "we'd rather have you here 4 hours a day than most people for 8" but they all saw that I am OBVIOUSLY not myself & OBVIOUSLY sick - how do I answer this politically correctly as THE DISABILITY CO says I'm not sick - great, more stress - I'm not a bad-mouther - but this is a tough one to get around.... maybe they can give me some skills to deal with this too!
At this time I went to the food court at Gulf Canada & had a Wendy's burger meat only on top of a garden salad & a baked potato for lunch with my friend. shortly thereafter, I walked through the mall (god it was disorienting in the crowds of people because I was pretty dizzy & unbalanced - but oh wait, THE DISABILITY CO says I'm not sick...) Stopped at the bookstore & Shopper's Drug as I had to catch a bit later train to go to my chiropractor - thank God my dad is picking me up & driving me home - I felt like Hell.
Got to my chiro & updated him on my situation - he wondered how "they" cannot see that I'm obviously not ready to go back.. LOL
Dad took me to CNF to pick up some gluten free bread & Kale... he was holding my arm due to the tippy uncoordinated way I was walking - but oh wait, THE DISABILITY CO says I'm not sick
Dad drove me home, I made some gluten free cinnamon raison toast - yum - and looked at the time just after 3 p.m. - so I've been out & about from 10:30 - 3:00 pm - 4.5 hours - they expect me to be able to work 4 hours /day + travel time
I was so super exhausted I could hardly move - went to bed and JUST WOKE UP AT 7 PM... I'm now too tired to cook dinner, so it'll be frozen veggie soup out of the freezer (crap - I only have 2 bowls left - that means I have to find the energy to make more this weekend) - I have no idea how I'm going to do this without first finishing "emergency" rehab/physio for 6-8 weeks to learn skills & get stronger prior to going back to work as my OT wants (and NOTE this was recommended by THE DISABILITY CO's independent neurologist too) - It takes MONTHS to get into Optimus & because my case was so urgent - they fast-tracked me & we have just done 4 hours of testing to this point - Hopefully the powwow next week actually results in my being able to learn some more fatigue management skills & get some physio for my physical issues before I have to go back without these skills.
I do NOT want this to make me sicker - yet I'm OBVIOUSLY already much worse. I will NOT let the bastards get me down! I want to return to work, I want to return to work as healthy as I can be, I will have to play the game if the powwow does not result in common sense however am so afraid of what it will do to me...
I've got to go - my arms are so heavy, I'm having trouble typing - I'm going to warm up some soup, maybe have another yummy slice of cinnamon toast & go to bed because even after my 3.5 hour nap, I'm EXHAUSTED.

Keeping track...

7:25
Been up for an hour. Went to bed at 10pm. 7.5 hours sleep & I'm exhausted as usual!
Saw my occupational therapist yesterday - we did more testing and she spoke with head office HR at the company for whom I work - they will not let me rehab prior to returning me to work! We've made up a 6-8 week immediate need plan with rehab/physio to be ongoing after that + work. This is total bullshit! She & I have a solid plan to rehab me to a point where I can manage the fatigue better and get physically stronger with physio to allow me to work and then do the continuing rehab/physio after the 6-8 weeks.
I am operating at a 74/84 on the fatigue scale (84 means the worst fatigue), They expect me to work 4 hours a day and do my rehab and do my physio and take care of myself. Fuck, I am freaking out! I barely have the energy right now to take care of myself. How the hell do they expect me to get better if they won't allow for proper rehab which was RECOMMENDED by the "independent" neurologist and supported by the Optimus program at the ms clinic.
The stress of all of this is hurting me, but there are only so many fucking mantras I can do to relax! GET YOUR SHIT TOGETHER PEOPLE AND STOP HURTING ME AND START HELPING ME GET BETTER!
I am so frightened of losing everything, my job, my health, my dad (he's stressing out & that's not good for his heart condition) UNIVERSE - IF YOU ARE LISTENING, I NEED YOUR HELP!!!!!!!

keeping track...

2:27
HOME! had to stop for lunch on my way as the apple I had wasn't cutting it. ordered a plain chicken breast with some lettuce & a tomato and a soda water. Sure wish they would invent a transporter to get from one place to another quickly 'cause that would save me a ton of energy!
I am so freaking tired right now I'm having trouble typing so I'm going to lie down

keeping track...

8:05 am
typing my status on Facebook - hmm... noticed that I was typing opposites (typing letters/symbols that I would normally use my right hand... L, ., ,, and found I was typing S, x, c - using the same finger, but on the opposite hand) until it registered that I was doing it & did my "focus, focus, focus" thing & went back to typing properly...hmm I'll have to point that one out to my OT this morning
I type using both hands btw... perhaps I should try one finger typing!?! LOL

keeping track...

7:20 am
Went to sleep just after 10 pm & woke up just before 7 am - did not wake up during the night (9 hours of sleep & my regular time to bed)
I am feeling about 65% energy level & it's cool in the condo this morning, so that helps! The forecast high is 21 - so not as hot as yesterday! good
My arms are still weak (dammit) and I have pressure behind right eye & had to do some eye exercises before focus was acceptable. I'm still nerve-shaky inside & a bit unbalanced (enter jokes here brats!) LOL
God, I wish I had the strength/balance/focus to work out - I miss it :( Even yoga is too much for my low energy level & body weakness right now :(
Oh well, onward & upward...
Poured myself a bowl of gluten free cereal (I love the maple flavoured one - yum) & almond milk with strawberries & blueberries. No smoothie this morning as I didn't get yesterday's dishes done & the blender is soaking in the sink...
Have to get ready soon because it takes over an hour what with getting downtown, catching the train, catching the bus to the Foothills hospital for my 10 am-noon Optimus Clinic OT appointment - I think we are testing memory today. Hopefully I'm not super tired 'cause it takes a while to get back home too (reminder - stop at the organic market in Kensington on the way back)
I'll pack a snack because I can't wait until 1-1:30 when I get home to eat lunch. The hospital cafeteria has very little healthy food, so that's not an option.
Give me strength! :)

Keeping track...

7:05 PM
ok... rested a lot today... finally just made my bed - haven't put the pillow cases on yet, but I'll do that when I go to bed later.
I am having trouble walking & I'm all shaky & exhausted! Just another day in my life. Didn't even go outside today.
Warmed up some soup for dinner (home made vegetable soup {from frozen} - yum) too tired to cook quinoa to go with it - oh well, it's pretty filling on its own. I'll have a glass of o.j. with it to increase the calories
Having trouble typing... my arms are very weak
Watch tv for a while & then go to bed...
big day tomorrow - hope I have better energy in the morning
Ciao
T

Keeping track...

3:40
Feeling weak after nap... have to get sheets out of dryer. I'll make the bed later.

Keeping track...

2:03
CRAP... just remembered I had that basket of wet clothes to hang up... have to do that before nap time :( frig, I have no strength :(

keeping track...

1:45
finished lunch
nap time - on the couch because I haven't got the energy to put sheets on the bed....

keeping track...

12:40
frig... got distracted... checked temp in condo - down to 20 YAY! forgot why I am in the bedroom checking the temp... oh yeah!
Go directly to the kitchen... do not get distracted.... wash frying pan....

keeping track...

12:30
still haven't washed that frying pan... feeling a bit cooler, I'll go and do it now because my tummy is a-growlin'!

keeping track...

11:45
Thinking about lunch... have to wash frying pan first. I'll go do that and then sit down for 10 minutes to get back energy required to cook lunch
I'm really "shaky" inside today - electrical system is hyper & I feel dizzy. Could be from the heat? I have great air flow in the condo & all of my fans going... temp on thermostat reads 24, so about the same temp inside as outside... I'm wearing a cooling neckband... if I have the energy, may have a cool shower later this aft

keeping track...

11:30... rest over... go put the blanket in the dryer (*decided to wash the blanket first as it takes longer to dry) & put a load of sheets in the washer...
(do not think about the mess the kitchen is in... I'll deal with that Thursday 'cause tomorrow I have to save my energy to go to Occupational Therapy for 2 hours (which does NOT include +1.5 hours travel time energy)

keeping track...

ok...
10 a.m.
sheets & blanket off the bed... pillow cases removed
removed yesterday's clothes from the washer to a basket
put sheets in washer & turned that on
sitting down to rest & having another glass of Kale/berry/oj/mint smoothie - am I a kale addict? I think so - must be my Scottish Highlander blood :)

keeping track...

So MSS suggested I start documenting my days since I am appealing the decision of the "independent" third party neuro who thinks I am able to work 4 hours a day & do rehab (and apparently take care of myself, get to from work, to/from rehab etc) with high level of fatigue & brain fog I have.! My Occupational Therapist at the MS clinic is supportive of me & we will be doing more testing later this week. She tells me my fatigue is a 74/80 which is awful! You want a low number on that test! LOL
OK... here it goes:
Had my usual 8 hours sleep last night. (NOTE that my bedroom is set up for sleep - no light can get in, cool temperatures, well humidified, raised bed to help blood flow & I sleep with a white noise machine in the room)
Woke up & did the body check... MS hug in lower left arm & general weakness in left leg, muzzle area of face is numb, eyes are weak & slow to get going, have about 65% energy
Got out of bed, a little dizzy.
Made a green tea, all organic kale/blueberry/strawberry/mint/touch of agave smoothie - thick green goodness :) (NOTE: i follow the recommended diet found at www.direct-ms.org)
Made brown rice toast with 100% fruit blackberry jam
Took all of my 'with-food" vitamins etc as recommended at www.direct-ms.org
Went on Facebook to see what's up with everyone... my MS friends are all hanging in there & supporting each other - nice to see
Checked email
Looked around my condo - laundry is sorted into 12 loads (note: I have been unable to finish a complete load of laundry in row for over a month due to fatigue - I have one wet load in the washer from yesterday - didn't have the energy to hang it up - will do that after putting it through the rinse cycle again right now) Good thing I have a lot of clothes! LOL
My sheets need changing - that job always kills me fatigue wise... must get that done now before the fatigue really sets in
It's going to be a high of 26 degrees celcius here today - that's not good! I can leave my condo unit door to the hallway open & get a flow of air from the pressurized hallway in through my unit - it's kind of like having air conditioning. Good thing I don't have to go outside today! Heat makes me feel like I have wet cement legs & it exacerbates the fatigue symptoms significantly.
I'm not going to think about all that I have to do to get prepared to go back to work - but I will document it here...
- prep food to freeze in portions as it's hard to follow my diet at restaurants & I won't have any energy to cook
- prep smoothies and freeze in portions so I can sleep longer
- find work clothes that still fit me after the prednisone weight gain (20 lbs) (I've lost 8 pounds - yay) I only weigh 155, but that's fat for me & I don't have any money to buy new clothes
- clean up from last night - wash yesterday's dishes that don't go in the dishwasher, put empty cans of no sodium club soda in the recycling bag, put away box of random costume jewellery that I brought from my dad's house (I still have a lot of furniture & personal goods stored at my dad's from over a year ago when I bought my condo & have been too fatigued to sort it all out to get it moved to my condo)
Lunch will be fresh organic pineapple (anti-inflammatory), organic chicken thighs, spices & non-gluten pasta...hmm have to be able to get that frying pan washed before cooking this... going to rest for a while
My arms are really getting weak & I'm going to have to stop typing soon... fuck I hate MS!

Rough 2 weeks....

So, I'm more certain than ever that I have CCSVI. Why, you may ask? I was at the dentist on April 19th for a routine cleaning. I was inverted in the chair for an hour... when I got up, I had a huge pressure in my head & still have it now, the MS foot drop, numbness in my chin, SUPER fatigue, BRAIN FOG from HELL all became my daily life since then. Was it all that refluxing blood rushing around my brain for an hour? hmm... I may not know for a long time. I'm on the waiting list for Poland - they've told me "some time" in 2011... the Buffalo researchers advised 5 years until treatment would be available in Canada... I have been off work since Sept 2009 due to severe fatigue & brain fog - but I would say I'm WORSE now than I was when I started all this! I was on a fairly steady path of improvement over the last 6 months and had anticipated a return to work by July'ish if all things kept going as they were. Now I've been set back even further... Not happy! I'm doing everything in my power to get better!!!!!!! (not having the stress of the disability company not supporting my illness doesn't help), but I'm SUPER frustrated right now :(

Vegan is not working for me...

I had become vegan to see if that would help the MS. I did feel a lot better, however, was still having "issues". Having read Direct-Ms's diet information (www.direct-ms.org), it seems to support the fact that a diet rich in beans, legumes & soy is doing me no favours! I was correct in my initial thoughts that dairy & eggs were not good for me... the Direct-MS diet appears to agree with that.
It's kind of funny, because I said to my friend that I wanted to bring meat/fish/seafood back into my diet on a limited basis & try to stick to better-raised animals to see what I tolerate well. There are a good selections of meats/poultry in town that are organically grown (a la the Paleo Diet) which supports eating natural meat/seafood etc & coincidentally is used for some of the recipes in the Direct-MS Diet!
The HUGE adjustment I'm going to have to face is no beans, peanut butter & no wheat/gluten (read beer & ww bread) - oh well, hello cashew & almond butter on rice crackers/bread, vodka & rum are gluten free! yay! and my low sodium soda water goes well with vodka :) The liquor store up the street carries gluten free red wines too, so that is always a bonus!
Onto another clean out of the kitchen... the food bank & drop-in centre are benefitting from my recent dietary evolution!
Now if only we could get CCSVI liberation available in Canada... onwards & upwards...

drugs side effects are sometimes worse than the ms for me! I have osteoperosis brought on by prednisone & I have no family history & always ate well & was active - now I eat calcium like candy... I have borderline high blood sugar from the prednisone - I am a vegan & don't eat any high glycemic foods... I have high blood pressure brought on by the prednisone... I am a vegan & limit my salt intake significantly! I inject copaxone daily & have no idea what effects it is haviing on me! Since starting it, I have had one major exacerbation but the fatigue & brain fog are worse now than ever

MS Society of Canada

Well... that was two hours I'll never get back! I'm disappointed in the amount of inaccuracies & the apparent lack of knowledge that Dr. Murray presented! He misquoted research & used statistics to discount individual improvements. He spoke about drug treatments at every opportunity & did not answer questions directly.

Order of Canada = Politically friendly

MS Society of Canada

Wow... Watching the MS Society of Canada webcast regarding CCSVI. What a load of political double-speak! Why didn't they have people who've had the procedure performed on them speaking about it!

CCSVI procedure - let's get it going in Canada!

None of us can change our yesterdays, but all of us can change our tomorrows. ~Colin Powell

Let's get the CCSVI procedure going in Canada!

I'm sick & tired of being fatigued & brain foggy! Let's get this available in Canada now! Prevent further damage!

Hmm

So went out with my friends from Lethbridge/Mazatlan. It was a blast - the usual debauchery on a pub crawl. Had fun even not drinking more than 3! Ended up booty calling the bf :) I went on the crawl with the ex as he's friends with them too. He told me he still loves me... that was weird & I'm like wow, should have thought about that before he fucked up our relationship by not communicating & then lying to me about the Vancouver trip! A part of me still loves him, but a bigger part of me can never trust him again! Plus my new guy is so nice & mellow it's wonderful! The ex is still one of my best friends - that sounds weird, but it's true.
Today is Easter Sunday and the 16th anniversary of my mom's death. I still miss her a lot! I'm such a completely different person because I don't have a mom. My aunt could have stepped up to the plate, but that didn't happen. Oh well, I have really great friends and my dad, so life is good :)

CCSVI

Success is all we are seeing from people who have had the procedure! There is an article in the Ottawa Citizen http://ottawa.ctv.ca/servlet/an/local/CTVNews/20100401/OTT_MS_100104/20100401/?hub=OttawaHome

I don't know if I'll be hit by a bus in 5-10 years either, but I want to live my life fully NOW! If that means finding $10,000 and going to Poland - I may just have to sell the condo & DO IT!

mmm... dinner

Vegan yummyness!

Tofu, broccoli, red hot peppers, jalapeno, red bell pepper, carrot, ginger, garlic, celery, cashews, gai lin & basil with a soduium-free crunchy peanut butter, thai hot pepper sauce, curry & coconut milk sauce with brown rice!

Not missing animal products tonight! LOL

no nap for me...

ok... too stressed to nap! Crazy condo management company left the insurance renewal to the very last second & we're stuck with inferior product due to their lack of proper risk management. OMG the risk manager degree is actually useful! Those CRM letters on my business card are actually useful... Good news though, the management company is being purchased by Gateway & their insurance is offered through BFL in Vancouver which will be good for us next year!

At least the other condo board members have a lot of respect for me in my fight to put together a better insurance package! I truly love insurance! What a nerd :) tee hee

money...

Just watched Asenal/Barca... good game... Zlatani love... Arensal, not so much! LOL

Nap time... beating MS fatigue sucks :( Why doesn't the disability company understand that fatigue & cognitive brain fog are part of MS! The insurer's neurologist better understand that! My MS Clinic neuro certainly does.

Tonight... I hope I have the energy to complete the kitchen cleaning that HAS to be done!

Ciao!

Fist time...

Virgin blogger starts typing... hmm

The blank page is always a wee bit intimidating! I have a lot of random thoughts cursing through my MS riddled brain.

I have MS, it does not have me. They call it remitting/recurring, I call it a frustrating issue that that I need to beat! I want my energy & cognitive functions back!

CCSVI is the new hot topic for those of us with MS. There are places throughout North America where I live & around the world that are offering the testing/procedure now. My neurologist blew it off & my family doctor said she'd be 'FORCED' to treat me legally if I chose to get the procedure done & there were side effects! So much for universal health care in Canada! Unfortunately, they are not offering it in my town & I do not have the means to travel elsewhere. It's weird, but I know that my jugulars are blocked/twisted before I even get tested. I've often felt that there is a tightening or something in my neck that cannot be attributed to anything regular medicine or even alternative medicine can identify until CCSVI!

My personal thoughts are that this may indeed be related to MS but it is a VASCULAR problem and should be dealt with as such! Angioplasty surgery is performed on heart patients every minute of every day with no fuss - why can't we apply this logic to people with MS who have blocked/twisted jugulars?

Connecting the dots between CCSVI & MS can be researched to death - take your time to make sure you are right - but please help the people NOW!

I've recently become vegan too... so my posts will relate to that too in the future. I love cooking & inventing new vegan delicacies is my new hobby!

Cheers