Just got out of MRI. This will have been my third. So much fun. Actually I find them rather relaxing. Is that odd or what? Next best thing to getting a massage, although prohibitive in cost to do more than once a year. Guess I’ll have to wait till September (next neuro app) to see what sort of spots showed up. In my last one my brain had actually improved, but there were new spots on my upper spine.

The only thing is, I have a heck of a headache now. I already had one when I went in, so you can imagine that it only got worse, what with all those blaring whistles and fog horns. I still don’t see how they get a picture of your brain by assaulting it with all these sounds, but oh well. Tis not mine to question why ….

Shemp>Curly

Find different books and movies and music with a search engine to find things you don't know about.

2008 is already slightly over half over.

OK, crafty folks! Here is a contest just for you. Use your crafting powers for the greater good.  :)

Saw this on the Today show this morning. Drink 6 to 8 cups of coffee a day can halt autoimmune diseases such as M.S.

http://www.telegraph.co.uk/earth/main.jhtml?view=DETAILS&grid=&xml=/earth/2008/06/30/scicoffee130.xml

I'm glad I drink coffee!

has anyone ever had the soles of your feet go numb? they hurt a little too. i feel like i took a very long walk and they are numb from it but it has been like this for a week. i called the neuro and he said to call him if it gets worse and runs up my leg. oye

I know it's hard getting that initial MS diagnosis. I got mine April of '05. But I'm just curious if people have gotten their diagnosis only to be told AFTER that now.... your neuro's just not so sure? Me, I've been bounced between so many neurologists it's amazing that any of my medical records are in tact, mostly because I've found the "special" part in "specialist" always seems to mean they ride the short bus to their clinic, but I was so sure once I HAD my diagnosis, things would calm down.

Nope!

Now I'm being told it could still be MS. Or things that look like MS. Or bizarre mutant strains of MS that can't be treated as we know how to treat basic MS...... Somedays I wonder if they make up all of these fun things just to annoy me.

So, here I am, three years plus after my diagnosis, a graduate of Avonex though I am currently on no immune-modulators (since we're back to the "um, I dunno" stage) in just as much pain, numbness and messed-up'd-ness as I was when I got my first flare-up (the complete loss of feeling in both legs from toe to hip) back in August of '03, by way of the optic neuritis express in '03. *sighs*

Is it only me? As anyone else gotten their diagnosis only to have to go back to diagnosis limbo?

I got another dose of reality when I read about the death of someone very young who had MS. Twenty four years old is just TOO YOUNG to die period. The young man and his wife were/are members of the LJ MS-support group, and she was kind enough to inform us... and I just got smacked in the face with how good I have it and how much yesterday was such a blip on the radar. Why should I ever complain? I shouldn't.

Honestly, I have so very little to complain about really. My tysabri infusion "buddy" can't live on his own because he has cognitive disability from his MS. So now he lives in a nursing/retirement home at the ripe old age of 39 and there is no one less than twice his age around him at all. I barely know the guy, but I'm thinking of driving down to KC (an hour) a couple of times a month to see him, play cards, do something so that he isn't just around his parents and the 70 and 80 year olds he lives with and that's it.

So many people have it so much worse than I do. A very long-time internet acquaintance (we played MUDs together) told me she had Stage IV Hodgkins Lymphoma the last time I saw her online. I am afraid to think too hard about the fact that I haven't seen her since then.

I often gush and ooze about how much I love my job, love my house, enjoy my life. This does not mean that shitty stuff hasn't happened to me (those of you that know me know that plenty of shitty stuff has happened), but it means that I have more good in my life than bad. I need to do more than superficially appreciate that. I need to remember all that I am thankful for and be grateful more of the time.

If I look very far on any side of me, I see someone who reminds me that I don't have that much to bitch about. I am going to do my best to make "Independence Day" this year about gaining independence from negative thoughts, whining, feeling bad or sorry for myself and my condition. Turns out, it just ain't that bad.

 I had new employee orientation this past Monday (for a large university).  I've been working here for 2 years, but since they finally reclassified me (read: benefits!), I got to go to orientation.  Everything is swimming along fine.  Then the presenter explaining the benefits starts in.  She's very blunt, with this I'm gonna tell it like it is because I know what I'm talking about attitude.  We get to long-term disability leave and the following series comes out of her mouth:
~
When people leave on long-term disability they don't come back.  They die.

If you have lupus or MS, you will eventually be disabled, so you'll need long-term disability.
~
Awesome.  So now I'll definitely be disabled, and I'll definitely go on long-term disability.  Which also clearly means I'll die from it.  I mentioned how sad and hurtful I found these comments in our anonymous feedback, but I've really be stewing about it.  I'm trying to move past that and view this as a teaching opportunity.  I've contacted the person running the orientation to speak with her about this.  Now that she's emailed me back to see if I would like to add more than just my comments (which in theory are anonymous).  I'm a bit stuck.  Do I have more to say than what I've already said?  Part of me wants to reinforce how devistating such comments can be, especially coming from a representative of the university.  Part of me just wants this presenter to know that MS is not a death sentence.

Just wanted to wish all my fellow crazy Canucks a Happy Canada Day!
Have a great day.
Take Care
CrunchyB

for those on tysabri...

what is your infusion facility like? does your neuro do it in-office or do you go to a regular infusion center? are you in a room with other infusees or are you alone? are the chairs comfy & meant for sitting for 2 hours or run of the mill doctor's office chairs? does your site offer extended hours or the basic doctors office hours?

( why im asking - cut for length & random eff words thrown in here & there as i get angrier lol )

xposted to various ms communities. sowwy.

for those on tysabri...

what is your infusion facility like? does your neuro do it in-office or do you go to a regular infusion center? are you in a room with other infusees or are you alone? are the chairs comfy & meant for sitting for 2 hours or run of the mill doctor's office chairs? does your site offer extended hours or the basic doctors office hours?

( why im asking - cut for length & random eff words thrown in here & there as i get angrier lol )

xposted to various ms communities. sowwy.

for those on tysabri...

what is your infusion facility like? does your neuro do it in-office or do you go to a regular infusion center? are you in a room with other infusees or are you alone? are the chairs comfy & meant for sitting for 2 hours or run of the mill doctor's office chairs? does your site offer extended hours or the basic doctors office hours?

( why im asking - cut for length & random eff words thrown in here & there as i get angrier lol )

xposted to various ms communities. sowwy.

hello achy joints, thanks so much for waking me up about an hour ago when I do have to be at work in 6 hours.

rebif is so sneaky.

you never know when the sfx will hit.
you can coast along without any problems for a few weeks; then, Bam .... you are sitting up at the computer wishing you could sleep after just taking your 2nd gel cap of aleve in the last 8 hours.

In recent years, stem cell researchers have become very adept at manipulating the fate of adult stem cells cultured in the lab. Now, researchers at the Salk Institute for Biological Studies achieved the same feat with adult neural stem cells still in place in the brain.

They successfully coaxed mouse brain stem cells bound to join the neuronal network to differentiate into support cells instead.
The discovery, which is published ahead of print on Nature Neuroscience's website, not only attests to the versatility of neural stem cells but also opens up new directions for the treatment of neurological diseases, such as multiple sclerosis, stroke and epilepsy that not only affect neuronal cells but also disrupt the functioning of glial support cells.

"We have known that the birth and death of adult stem cells in the brain could be influenced be experience, but we were surprised that a single gene could change the fate of stem cells in the brain," says the study's lead author, Fred H. Gage, Ph.D., a professor in the Laboratory for Genetics and the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases........................

For the full report please go to MSRC: MS Research News : Stem Cell Research & Treatment : General Stem Cell Research : Adult Stem Cells

 I know I'm not a frequent poster, but I'd like to share that my husband lost his battle with MS on Saturday morning.  I miss him so much.

My name is Lucky. I'm 20 and I live in Chicago, Illinois. I identify as a soft butch lesbian living with an emotional/learning disability. I also have bipolar disorder. I attend Malcolm X College for my A.A. degree in Theater Arts. I work for About Face Youth Theater as well. I get SSI every month. I found this group and wanted to join. I have never been in relationship since coming out at 16. I'm often the loner being that I feel discriminated due to my disability, as if a stigma against lesbians with this type of disability, and I hate that. I hate that you have to look the part to be loved, like you have to "look normal". Very annoying really. That's all I have to say for now. Hope to hear from you all. I do have a myspace page, so check out my bio info.

Love you all!

~Lucky

I got up, got dressed, got all ready to go (which if you have MS is sometimes a production in and of itself) and I even drove more than halfway to the office.... then I pulled over, and promptly called in sick. Well, actually I called in "bleh". My bosses are very understanding that me calling in "bleh" is not the same as most people calling in "bleh". My "bleh" usually = nerve pain, fatigue, bladder dysfunction, etc. Today dizziness was on that list too. And the uncontrollable feeling that my body was on fire. I could NOT cool myself down. Blasting the AC in my face in the car on the half-way to work didn't even help, and that usually always does. Could I have gone on to work and survived this? Yes, I probably could have. Would I feel worse for toughing it out? Most likely. So I have learned the valuable lesson of "listen to your body".

I listened, brought body back home and threw her back into bed, and I just woke up a half hour ago. Something was definitely not right with me, but at least I feel a little less dizzy and faint now and have finally cooled off some. I am going to turn on a fan in every room of the house and point it whatever direction I happen to be, maybe that will help the stuffy/overly hot feeling I have (even though the AC in my house works just fine, and my feet actually "feel" cold -- though I think it is just the nerve pain kind of cold?).

Maybe I just didn't get enough "down time" this weekend. Who knows? I will try to stop this from being a total "whinge" post now though and just say that this is:

a) The first "call in MS-y" day off work I've had since I started my new schedule, which is almost a month now. That's pretty good, actually (and somewhat sadly!)... but it makes me glad to know that I've really been feeling that much better. It has been a nice reprieve, and I think today is just a little bump in the road that happens from time to time.

b) Almost the 4th of July! Wow I can't believe that it is almost halfway through summer already. It also marks 4 summers, four July 4ths that I've spent in this house. I really love my house. I should take/post some pictures of it at some point. It has it's quirks, but it also has every amenity that I require (all one floor, laundry in the kitchen, ramp in the back to the driveway, etc.) and a ton of personality to boot. I love it here.

c) Speaking of the 4th of July, it is almost time for the Davis picnic at my parents house in KC. Today, tomorrow and Wednesday it is going to be 90-ish degrees per the forecast, which would be yucky and I would likely stay home. However, on Thursday it is supposed to rain and get down to 76 degrees (for the high temperature!!) and Friday 82 degrees. This might mean that for the first time in 5 years I will go to KC for the 4th of July. I'd really like to... it is always so much fun and is great to see my family. I guess we'll just have to see.

And now I'm going to sit in front of a fan with a cold washcloth on my face and maybe try to eat something for lunch... and hopefully gracefully slide over this bump in the road.