Happy New Years everyone. Cheers to more remissions in our MS/health and many more laughs to come in the new year 2005. :)
Whats everyone up to tonight? We're staying home to be entertained by our house guest.
Good reason to not have a "Hot Bath Test"
Came across this little piece of craziness... I guess they used to use a hot bath to test weather people had MS in the dark ages. Obviously it isn't a valid testing tool. That for me would be as torturous as getting the Evoked Potentials done!! Seriously... Some of us know how much sitting in a hot bath sucks... take it from me that Evoked Potentials are just as bad from a pain perspective!
Tonight's walk. 1.79 KM, 27 min. Feeling a little tingly and rosey cheeked.
Today's walk. 1.83 KM, 35 min.
I'm not sure why...
Every day I check on Mount St. Helens. It's usually foggy or raining these days... but I'm kinda fascinated by it. If she does blow at some point, we'll likely see ash falling over here where I live even though we're pretty far away. Still, I watch and wait.
Today I'm thinking more and more about going back to work. I have to go to my family doctor on Tuesday and discuss going back to work or not. I think I will go. On January 14th it'll be 5 months since the sixth nerve was activated and I'm pretty certain my vision is 95% back if not more now. I still lose balance pretty easily though. I guess thats something that gets to stay a part of me now. Its okay I guess. It doesn't hurt, I've never fallen from it and it gives a chance for comedy to happen. I've also been getting too hot lately which is annoying. Like right now. My hands are too hot. They still work fine, but they're hot! And at night when b0th my cats pile into bed with us, they wind up lying on me and making me overheat.Â I need to train them to sleep on my husband instead!2005-01-04 05:52:00
Tonight's walk. 2.5 KM, 40 min. I wasen't so staggery on this walk so we could go further. It was damn cold though!
What a good day. Went out and bought all the fixings for a turkey dinner. I'm going to get it right this time ;) I hate cooking something that doesn't work, so I'm doing it again! I'll be a pro by next Christmas for sure. After going out for a longer than usual walk and not losing balance at all, I came home and had a nice big mug of white hot chocolate with mint flavouring. Mmmmm... And I didn't react with the heat of it at all! Weird... a day without MS? Huh? Weird. Cool, but weird and unexpected.
Its below zero today... nice and sunny and crispy cold. Nice really. Maybe thats why.........
I have an appointment in an hour with my family doctor to discuss where I'm at with being off work. I think I'll ask for him to send me back on the 17th part time first then move up from there. I was anxious to talk to him about all the awful blemishes I've had on my face for the last several months (not sure why all of a sudden or if its MS related) but for some weird reason my face is actually pretty clear this week. So I really don't have proof of what I'm talking about! I'm glad for clear skin again, but wanted to know why.Novel Oral Treatment for MS Under Development
Good news for the future of MS drugs if they're this close to getting oral drugs in the market. The clinical trial the MS clinic talked to me about was for this same thing (but not sure for which drug). An oral option for an existing injectable drug. It'll be interesting to see how this progresses as far as success.
Damn my house smells good today! Dinner is set to be served at 7pm. We'll see... ;) I even bought a little mini Mango cheese cake for dessert. Yum!
Turkey dinner update :)
Well, I'd love to update and say the turkey dinner went flawlessly, but that would be a lie. So the truth is that the smoke detector only went off twice! Thats it!
Turns out the pan I bought to cook the turkey in had a leak in it. So once all the yummy juices started to fill the pan it started to leak. When I opened the oven to baste the turkey (and pulled the pan forward) the juices started leaking into the bottom of the oven, down through the door, into the drawer under the stove and onto the floor. Lovely. No problem, take all the stuff out of the drawer and clean it up. But then all the grease in the bottom of the oven started to smoke like crazy! Bellows of smoke come out of the oven vents, the alarm goes off and my husband and I are looking at all this trying to figure out if we just pull the darn turkey out or let it smoke itself out and burn away the grease. The latter was the only option really as the turkey wasen't cooked yet! Then, Tod goes and digs out a fan to get the smoke moving out of the house. Then took a picture of the smoke although I haven't seen it yet ;)
However, all this being told, the dinner was on the table when our good friend arrived after work (he was running behind as was the turkey) and it was YUMMY! And that mango cheesecake was to die for. We have lots of left overs now too. Unfortunately I'm going away this weekend so I'll miss out on some!2005-01-06 09:23:00
Today's walk: ??KM (the pedometer broke!), 31 min.
Our snowy backyard
Woke up this morning to all this crazy white stuff! Of course, it has to come on the day that I need to drive to the airport! Grr!
Well, this weekend was a grand success. 9 great women all gathered together on a small island in a great getaway place, in two feet of snow, no power and a few bottles of wine :) Despite all the crazy snow and no power I had a blast being away. Its always good to get in some solid girl time away from the world. I feel refreshed.
And its snowing again today. And its not supposed to snow in the lower mainland! Seriously. We get maybe one little sad snow flurry a year. There is at least a foot on the ground now!
Craziness. So, no one drives in it. You'd be a fool to with all the inexperienced drivers out there. So house bound we are. And I love it! Its so beautiful out there!2005-01-12 03:43:00
6 more days until I go back to work. I'm still not certain how I feel about it. I think that I'm ready firstly. My vision seems to be okay. My balance might be a little better in the last couple of weeks. I'm still reacting to heat though and I imagine that won't go away. And really, my decision to go back was mostly made for the normal feeling I know it will give me. I have a new boss that I have never worked with before so that will be different. And many of my friends at work are pretty stressed out these days, so I worry about my stress level in going back.
But all in all, I am looking forward to ending this mandatory rest period. It will be good to say goodbye to what was I can easily say the most trying, hard, confusing, exhausting, and emotional period of 5 months of my entire life.
I can't keep up! I have about 3 or 4 emails in my inbox that are from MS orgs that are updating on the latest and greatest but I just don't seem to have the time (or perhaps inkling) to read through it all.
In fact, I find myself moving away from doing MS research these days... maybe its a way to move away from this attack? Or maybe I've read all I can that impacts me the most? I feel at peace with my MS. I don't resent it. It makes sense to me. I think I get tired of thinking about it all the time.
So, I'm off in a couple hours to go back to my family doctor and get my "back to work note". I have to send it off to LTD and my employer so they can all see that its not just me making a rash decision about coming back.
What I find funny is that I'm the one who tells my doctor if I'm ready or not! Then he writes what I tell him to write on the note! Whatever. Formalities.
What should I do on these last 3 days before heading back to work? I feel like I should celebrate the passing of this attack or accomplish something other than "recovering". Any suggestions? :)
Oh ya... today also marks 5 months since the double vision activated itself. Its gone now.
Back to Work Tomorrow!
Tomorrow is my first day back to work. Yay! Back to normal living. It'll be a good change of scenery I'm sure. My family doctor gave me the coveted return to work note so it's all official. He asked me what MS symptoms I do still have. I have 3. I still get tingly feelings in my legs up to about my hip. Mostly in the right leg. I get off balance after walking for about a kilometer. And I react to the stupid heat. All things that don't affect me day to day they are just annoying. I know the MS readers out there get that. I think they're called the invisible symptoms.Review: "Women Living with MS"
I'm reading Women Living with MS right now that I would definetely recommend to others to read. Including family members. Its about a group of women who all have MS that live all over the place and help support each other through email. They talk about the things that most other technical MS books don't cover. Things like reactions, telling your kids (or not telling your kids), sex, memory problems, pain, deciding to get a cane or wheel chair, ect... They post exerpts from their email threads that are from women of all ages and all the varying forms of the disease. Anyways, I'm finding that I can relate to lots of it and are more educated from the rest. Good easy read and a nice change from the technical/medical read of the numberous other books I've read.
Ahhhhh good ole rain is back today! We got another dump of snow last night that forced me to leave my dad's birthday party early. But I woke this morning to slurpy like snow and not puffy nice stuff anymore. YAY! Melt the snow away! Its cramping my walking style!
So far so good
So today is my second day back at work. All seems to be going well although I'm a little eye tired (if that makes sense) after leaving work and driving back home.Â I'm only working 4 hours a day and if that goes well, I'll move it up to 6 hours a day next and so on back to the regular 8 hours I should be working. I think its a good way to go back... slow and easy.
Kinda strange... I have a new Team lead at work. My old one has moved on so I'm pretty much coming back to work for someone I've never met. But she seems to be really great. We had a long chat this morning about work stuff and personal stuff. She shared that she has a friend with MS (worse off symptoms than me) and totally understands my situation and understands the disease itself. She was very supportive and wants me to work closely with her if I'm feeling too stressed out or anything that would create a bad health situation for me. I'm quite happy, as I don't think my previous team lead would have been as understanding. So, so far so good.
On the other hand... we are in torrential rain fall mode right now! The snow is all melted away and the creek in our back yard is HUGE! I've never seen it this big. Its so loud! Luckily we are perched up quite high so the overflow isn't close to us... but holy smokes keep away and don't fall in! Pics are posted on my Flickr account which you can click to on the right hand column of pics. :) I heart Flickr.com.2005-01-19 06:19:00
One more thing... I'm smarter than I thought I was. I found out today that I choose the best option for Long Term Disability coverage a few years ago when we needed to make that decision at work. I have 5 years with cost of living adjustments AND because I have a "disease" now, I can never change that coverage. Its the highest that they offer, so I'm quite pleased to have unknowingly made that decision for myself. I remember thinking way back then... if my back ever acted up with this degenated disc I want to be covered. Never did I think that I would be off work for 5 months with MS! Jeesh. SMRT.
Missed the episode of Larry King Live on MS
Heres a link to the script.... I've read it and theres not anything new really, just kinda exposing the disease for what it is.2005-01-22 04:47:00
Todays walk: 0KM. Zilch. Zero. We jumped off the walking band wagon. :(
***BUT, tomorrow Tod and I are going to get haircuts and then go to MEC to get proper rain gear to walk in, seeing as the rain is not letting up around here any time soon. No more excuses. The snow is gone and the rain is constant.First week done
I'm feeling pretty good after my first week back at work. My eyes have done well and no vision problems... although, (it's hard to explain) but I get this kinda "sketchy" feeling sometimes when I am looking at something detailed like the contracts I work with. Sorta like my eyes just for a moment can't catch up, but then they do and it creates this sketchy moment. I just close my eyes and rest for a moment, then its all good. So other than that, I'm not stressed out being there... everyone else seems to be!
Got my jacket yesterday, a spiffy new haircut, and dinner plans for this evening. Thats the sign of a good weekend :)
Interesting new report
**Interesting connection to Mono... I had mono in 1999. Anyone other MS'ers have it in their past history?
From the article:
In the Jan. 26 issue of the Journal of the American Medical Association, the investigators report those who had up to five years of contact with a younger brother or sister had an 88 per cent reduced risk of suffering MS.
Among adults who lived with a young sibling for one to three years, a 43 per cent reduced risk was observed.
People who were exposed to a younger sibling for longer seemed to have a lower risk of developing mononucleosis or an overactive reaction to Epstein-Barr virus, antibodies from blood tests taken for the study showed.
Today's walk: 25 minutes. VERY staggered walk today. But not so tingly legs. At least I was all bright in my new yellow rain coat though. I could be seen if I fell off the sidewalk.
This is way too cute. A little baby Hippopotamus that survived the Tsunami lost his mom and adopted a tortoise to be his surrogate parent instead.
LatelyI've come across people talking about their doctors not listening to them and not thinking they have what they feel they do. This scares me. My doctor, I can say has not been bang on with some things in my past either (ie: not sending me to a Neurologist when I had numbness and tingling in my legs and an arm, duh!). But when I was 25 and this was happening to me, I'm not sure I would have been as prepared to deal with a possible MS diagnosis. I think I would have been... I don't know... more devastated... more depressed about my future... more reluctant to accomplish what I have... I'm glad the cards fell as they did. I'm a stronger woman today and don't feel like my MS will defeat me any time soon. It might be a constant irritant but I'm confident in the doctors I have surrounded myself with to keep it in check. And I'm confident in myself to be honest about how I physically am.