I just heard that tonights episode covers MS as one of their topics. Sorry for you folks in the US if you don't get Canadian channels... I'll post what they report on after I watch it.
Last week's appointment
So, I was at the MS clinic last week and got to ask the questions I had about myself and in particular the Benign vs. just RRMS. So, he said that there are a couple factors that give that diagnosis even though it is prior to 10 years of data. They know from history of people with Benign MS that the first major attack (where diagnosis is usually given) is a sensory problem. They also know that those people are usually young and often female at a rate of 2 to 1 over men. And he said that because I am fully ambulatory I also fit into that category. And because I have had sensory stuff first the likeliness of my next attack being sensory is high as well. So, because I fall into these criteria they can say that my path should be Benign based on how other Benign patients pathes have been. Both my Neuro and Opth Neuro are in agreement to not give me that IV steriod... Solumedronol (sp?) as my body is healing my sixth nerve palsy on its own and they feel it'll be a complete recovery. In fact the words he used were "you won't be able to tell me what eye it happened in by next summer". Good, I say, except I have a memory for these things and will be able to remember (smirk).
Other random things I found out:
- my neurologist talked to me about not feeling like I did before the attack and that I won't likely ever feel the same. He said that in October he changed my life by giving me a diagnosis that NO ONE in their right mind could not be affected by. He said it was kin to telling a 55 year old man that he just had a heart attack. Its something that emotionally changes you forever. How you think about yourself, how you think people think about you. He said that the hardest thing for me will be in convincing people not to baby me just because I have MS. I appreciated this chat as it reminded me to be normal.
- Heat! Damn, now we aren't going to buy a hot tub. Boooooo... So, heat doesn't bring on an attack, however, it will let your body bring up past sypotoms from attacks if it is actively demylating. Its not good to remind your body how to do that. This also explained why every time I travel to somewhere hot, I get sick. Hello northern vacations from here on in! Darn I wish I would have gone to Sweden with my husband to the ice bar. That would have been perfect for me! LOL.
- My Evoked Potentials tests came back all okay. Yay, I guess? I think that test was a wasteful one and it hurt like bloody murder. Don't have this done if you can opt out. Do the SEP one but not the VEP one. The Sensory one is fine and the electrodes are just on your head. The VEP one is the one that hurts when they put this electical current through your ankle to test how fast the pulse travels to your brain. Whoopy. My body moves messages 210km/h. I'm not sure how that helps me. I guess if it was slow they could have said that I have remenents from my 2001 attack.
- I asked my husband to print out my questions before my appointment. He had to fly out of town on the day my appointment was and couldn't come. He put an extra question on my list. It was "ask Dr. Oger how come your husband is soooo sexy". I didn't read the questions prior to the time I was sitting in front of my doctor. I didn't ask him of course, but it was pretty funny in the seriousness of the moment to see that and be reminded of Tod. Lesson learned? Give your spouse your questions ahead of time to see what happens to them at the appointment ;)
The missed CBC report on birth month and Vitamin D
Here's a .mov of the CBC report that I posted on earlier for those that want to watch it.New report about Mercury dental fillings
This article cites that people with MS or other immune diseases should not be removing all their dental fillings. The fillings are not harmful and are not contributing to immune diseases.
Got me thinking...
Erik posted yesterday about strong teeth and it got me thinking. For the last few days I've been trying to fight off a cold. It just hasn't taken over and run its course... its just kinda lingering at the surface level never making me super sick like it normally should. Is my uber over-working immune system working to my advantage here? Do other MS'ers stay relatively healthy in the non-MS way? Or is our immune system actually "compromised" and not able to fight off the normal winter yearly cold as well? Is our immune system compromised or now super sonic? My thoughts of the morning...
I just got a phone call from my long term disability provider approving my claim. Yay, I guess. I still wish I didn't have to put in the claim in the first place, but it had to happen. I don't want to go back to work too early and then have to be off work again. So, in January I'll go back to my doctor and we'll reassess where I am and come up with a game plan on going back.
Moo grooming Feek 2004-12-11 20:36:00
Okay, so its not hot outside. I do live in Canada. However, tonight I had a nice hot chocolate... it wasen't all that piping hot but right afterwards I felt like my whole body was overheating big time! My face, neck and chest flushed red, my hands got all super hot and red and it took a while of sitting in front of an open window to cool down. I drank some cold water too which my neurologist said can sometimes help and I guess the combo did. It sure make me fell awful though. How to explain...kinda like I can't get out of my skin fast enough before I overcook! I've read in other MS books and other blogs and postings that heat can affect "us" and I've always had this reaction and never knew why. In fact I just kinda thought it was me.
Same thing happens when I drink red wine. Do any other MS'ers react strangely to alcohol in their system? With alcohol and my sixth nerve palsy still being active, it really reactivates the double/sketchy vision. Needless to say the negative reaction far outweighs the lovely taste of a chardonnay these days.Thinking about other peoples responses...
In the last few weeks I've been a little more social. In doing that means that I am seeing people that I haven't seen a while... or other people I've never met before that know about my MS through my family, friends or whomever. I find it difficult when someone I don't know asks me how I'm feeling in that kind of "I don't really know what else to say to you but I know your sick" type of way. I don't really feel compelled to say anything other than okay or good. The standard answer that we all say to people we don't know. But now, it just feels different. Its a weird feeling. I kinda don't like it. I wish people would just act normal around me!
On friday I'll be going to my work... I haven't been there since this attack started. My closer friends and co-workers have come here to my house to see me, but the rest of them don't know why I'm not there. My work is very protective of your privacy and about why people go on leave of absence. Most of the time when people go "on leave" from work, you don't see them come back. So, its going to be strange going back to the office where everyone is stressed (its querter end in two weeks) and curious as to what I'm doing. And yet, I miss that environment! I miss the interactions with everyone. I never wanted to be off work for this long, but I have to let my body heal. Anyways, it'll be an experience to say the lesast. Wish me luck.
What to do to pass the time
On the days that I don't have places to go or appointments to be at, I spend a lot of my day looking outside. Just this past May my husband and I bought a house that has a creek running through our back yard. There are lots of beautiful tall trees and it feels like our very own little forest surrounds us. Its a salmon spawning creek (although we beg to differ after this seasons poor salmon run) so it brings much wildlife to our street and back yard. We get bears, raccoons, hawks, woodpeckers, all types of birds you can think of, squirrels and lots of dear. I have a fair amount of bird feeders around the house too. So, when I look out my window I try to photograph what goes on and who is visiting and who is having kids. I've started to upload some of my better digital pictures here.The other pictures I take are usually of my cats which you've already seen posted here :) They fill up the rest of my day with their crazy antics.
So, I'm surfing around tonight and found Emily's blog which is great. She has a very down to earth way of writing about MS and her life with it. She had a link to an MS Sucks website that has the funniest bumper sticker ever! I want one! I just think its hysterical that the little happy face comes with a lesion of its own. Thats great.Interesting observation today
So, I went to my office work party today feeling a little nervous. All was well though... lots of hugs, lots of concern, lots of "you look really rested" comments. One person (whom I won't name) is a person I've known for a little while although not well... not on my team but in the general office. He asked when he saw me "so what's wrong with you?". I was a little taken aback, but just told him that I was diagnosed.. blah, blah, you know the story. He immediately said "oh, do you get tremors in your hands?" I was a little stunned by the question... perhaps he knows someone with MS who does and thinks I would have the same? So, anyways... I guess he watches West Wing. I don't watch the show, but I see that a few bloggers are posting about the show like My MS Journey did. I guess thats the only thing he could relate to? Interesting.
I got lots of "when are you coming back" questions... which for me is a tough call. I always want to answer tomorrow!! But, anyways, we'll see. Maybe next month.
Someone sent me this link to the site called Health Talk. I definitely recommend it. Its very straight forward, does live broadcasts on new products, has an ask a doctor section and has a host of other topics besides MS info. Good stuff.
Because I don't take any of the MS drugs I'm not up on how they are taken or what they are supposed to be doing, but this site has some good basic info on them that gives me a good intro to understanding them.
I'm always a little leary when I first look at a site... If its funded by a particular drug company, I'm usually not too interested. I couldn't see any product placements on this site, however if you do see something I missed let me know.
Why I Don't Take Meds
I was asked why I'm not on meds for my MS. The answer is a couple reasons. I have Benign MS and my doctor is not of the opinion that I should be taking meds at the moment. I am recovering very well (with high expectation of 100% recovery) without any meds specifically for my sixth nerve palsy. They were offered to me, but the side effects and long term effects far outweigh the benefits of just getting me back to work when my body is recovering for me just fine. If your curious they offered me IV solu-medrol. Both my Neuro Opth and my Neuro were against it, but offered it non-the-less.
The other reason is that my husband and I plan to have kids in the some-time future. So, that would be defeated if I were on any of the meds and having kids is not something I'm willing to throw away just because I have this diagnosis. Once I'm done having kids my neuro doc says we'll re-evalute meds at that time.
I also have a positive history with recovery. I had an attack in 2001 that took me about 6 months to recover 100% from. Then, remission for 3 years. So, if I'm able to do that on my own, the preference is to let my body do that and not be compromised by drugs.Â Now, if I start to not recover or have multiple attacks all the time, I'm sure I'd feel differently as would my doctors. And really, I'm not that bad on the whole. I have remnants of my eye crap going on, some balance problems that are not so bothersome and my usual degenerated disc issues... so, even in my every day life before the diagnosis I rarely even take advil to manage any bad back days.
Merry Christmas to you all
Its about an hour away from throwing the first turkey I've ever cooked into the oven! Wish me luck! I now officially have 5 different ways to make a turkey. Everyone swears by the one they use and all say the other is not good! LOL! So, we'll see what kind of fiasco turkey dinner I can throw together for my family. Fun Times. :) I hope everyone else out there has a great day, doesn't get too exhausted, or overheated cooking in the kitchen. Thats all I'm hoping for today.Things I learned from cooking my first Turkey
Okay, so first of all, never ever ask 4 people in one day how they cook a turkey. They'll all tell you different directions and tell you the last person's directions won't work! That was my first mistake. My first turkey didn't get on to the table until 8pm!!! hahahahh! There was a moment where I thought I should be taking everyones Pizza preferences. I decided that I would take everyone's directions and average them out... which resulted in an under cooked turkey and rather late dinner time. Ahhh well... its our first Christmas in our new house and my first cooking turkey experience that we'll remember for years to come. Hope everyone else had good family time and Christmas spirit.
A way to help
Amazon.com is helping the Red Cross to get relief for the Tsunami and earthquake disaster.
Lucky, lucky me! Our good friends have gone away for New Years and left me with their African Grey Parrot named Eugene. He is brilliant! He owns the house big time now and is uber entertaining. When I go in the morning to take his cover off the cage he says in a beautiful rich mans voice "Hello gorgeous". What a way to start the morning!
The problem now is that one of my cats just can't get over him being in the house. She's very scared of him every time he moves. So half the house is no longer available for her to live in and she slinks away all sad. :( Poor girlie. She came and hung out with me in the office (taking Tod's chair away from him) just so she could be close to us. I'll post a couple pics I took.
Curious Eugene 2004-12-31 19:31:00
Mad Echo 2004-12-31 19:32:00
So many things to say...
Okay, so firstly I don't like that if a blog doesn't have an RSSÂ feed I can't have it in my blog roll. Boo.
Secondly, I think I had a bulging disc the other day. Everytime I looked up (as in the shower to rinse my hair) I had this new and brutal pain! It's gone now but it was directly related to the tension in my shoulders and it would go away if I brought my shoulders down. And it was likely tied into the fact that I haven't been doing my walking or yoga or muscle balancing over Christmas. I don't know why, but I need to get back on the band wagon.Â Fast.
Thirdly, having a house being built beside you is not fun. Yesterday I needed to go out and this giant truck was completely baracading me into my house (we live at the end of a cul-d-sac).Â So I kindly asked them to move and the guy looked at me and yelled "F***, you people".Â He said no at first but Tod came out and also told him that he wasen't allowed to baracade people in their own homes and yes in fact he did have to move. He did. It took him 4 minutes to move his truck and I was on my way. Nice. All that for four minutes. Tod had a chat with the guy in charge on the site and they said that guy was not nice to anyone that day. We're phoning city hall and the police the next time it happens though. I, personally, with all else going on in my life, don't need to walk out my door to be treated that way!
Okay, enough said. :)