various updates!

by tinglyfeeling on June 28, 2009

in Quality of Life

lazy sundaySometimes, the need to have an actual blog topic makes it really hard to blog. So, I bring you a post of exciting miscellany and whatnot! Whoooo!

So here goes:

1. I went on a long bike ride (30 miles!) yesterday in 75+ degree weather. Survived. Had lots of fun. Riding my bike is definitely on the list of things I never want to have to give up. Recently, a fellow MSer expressed surprise (or was it incredulity?) at my *still* being able to ride a bike. Thinking about this activity in terms of *still* being able to do it is not where I’m at. Not yet anyway, and hopefully not ever.

2. I’m hopeful, more often than not, that I’ll be able to live out my life with this disease and be able to maintain some degree of normalcy. I can’t imagine not being able to work or do the things I enjoy doing. I know that’s a reality for many, but deep down, I don’t believe that will be my reality (I think that’s called denial?). I still have my bad days, but I realize that things could be a lot worse for me and I am grateful for that.

3. Stress and janky weather are the enemies. I can’t control the weather, but I need to do something about my stress levels at work because it keeps landing me in the extreme fatigue hole.

4. I go on vacation for a whole week and a half in about a month. Taking that much time off work has certainly contributed to my stress, but I’m not going to let that dim this light at the end of a very long tunnel.

5. I finally scheduled my next set of MRIs. I was due for them in June, but for some reason, I kept thinking the doctor would call me to remind me. Ha. So, in August I’ll go for three MRIs on my spine and brain. I have to do the contrast this time, too. I’ve heard the stuff they make you drink is delicious (boo to that). And then I’ll meet with my doctor the next day, where she’ll probably make me hop on one foot and pick up little pegs and put them into tiny holes (hopefully not all at once). I suppose I should be getting a blood test, too, to make sure the Avonex isn’t destroying my liver.

6. It’s summer in Seattle. We usually only get about three good months of summer here, so I plan to use the time wisely, which means more bike rides, some camping and enjoying cocktails and sunsets on my deck.

Cheers!

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  • With the range of disease modification treatments coming on board, the odds are that you can manage relapsing/remitting MS until you, uh, expire.

    (Something I with I'd have known about before my last attack.)
  • I suppose I should talk to my Dr. about the new treatments when I see her in August. The Avonex has been pretty easy to manage so far, but it might be wise to add something else to the mix. Just in case?

    Did your last attack have lasting, debilitating effects?
  • My last attack was in 1997 and it left me walking slowly and using a cane.

    The MRI showed a mess of sclera in my corpus callosum.
  • I'm sorry to hear that. I guess I still have a lot to learn about how suddenly things can change--that it can take just one good attack to change everything. But ... how do you feel about it now?
  • How do I feel about it now?

    By 'it' do you mean my MS?

    Since discovering Rebif™, I can control any relapses so I don't have any permanent damage and the flare ups don't get severe.

    How do I feel about never having found out about disease modifying treatments until it was too late?

    Pretty friggin' pissed off about the total lack of media presence which let me get an attack rather than discovering Rebif™ before.

    That's why I started my podcast.

    I wasn't going to just lie down and take it. I was going to do something about the lack of a media presence by having an interesting show about interesting music and about how life goes on.

    I've got two sponsors ( art2shirt.com and barbco.biz ) to help me spread the word and in January I'm opening up a web radio station as well as my podcasts.

    Hopefully I will be able to interest people who make products that MSers and others need to advertise with me.
  • yeah, i suppose i meant all of it--the MS, the lack of knowledge out there when you were diagnosed, and just how you feel about your life now. i know it's a lot to ask you to sum up in a blog comment. but thank you so much for sharing.

    your podcast (and upcoming online station) sounds awesome. i've subscribed to it in my google reader, but i haven't had a chance to tune in at work yet. i think i was afraid it would make me cry, since whenever i read about MS at work and it gets TOO REAL, i get all misty. heh.

    i'll be watching your tweets for updates about your podcast and will throw you a RT whenever i can.
  • Trust me you "wont" cry.

    Its NOT a tear jerking, rending of garments, "Oh, Woe Is Me!" type of podcast.

    Its NOT filled with medical baffle gab.

    Its NOT filled with "hopeful news" of some research that might pay off in the distant future.

    Its NOT a constant begging for your dollars for research.

    Its NOT a short lived

    Its about me and it could be about you too, if you have or can get a PC (or a Mac,), Skype, a USB microphone (I can send you recommendations and links via email and I'll even refund you the purchase price for the mike if you'll agree to doing shows for 15 weeks {45 shows}]

    Entertainment with awareness is the point of my podcast (and you can subscribe with iTunes by clicking on [ http://phobos.apple.com/WebObjects/MZStore.woa/... ] )

    There is a black square "envelope" icon called "email me:" down the left hand side of the http://www.MSBPodcast.com which will launch your email program when clicked on if you'd like to know more about getting the USB microphone and piping up about how you're COPING with your MS. :-)
  • My first and last attack (late Jan - late March) left me using a cane most of the time too. I wonder if I will ever get better from, like, be able to run and ride a bike again. I was just diagnosed in early January so this is alllll new to me.
  • dude. that sucks. this disease is such a fickle, vindictive beast.

    are you doing anything differently now? like, have you changed your diet or started acupuncture or anything like that? not that those things will help for sure, i'm just wondering what your approach to dealing with all this madness is.
  • I havent started acupuncture and wasnt sure if that would help with any of the symptoms. It sounds like something I should look into. My diet is pretty much grain, sugar, soy, processed foods, hydrogenated oils, etc free. What are you doing?
  • The first thing to realize about MS is that its nothing personal but your nerves are coated with something that your immune system confuses for an attacker.

    [In my best Canadian Hoser accent] "Why that is, like, we don't know, eh?"

    But the have adapted some of the research into AIDS to shut down the T-cells whenever they get "stupid" and attack us. That's what Avonex™, Rebif™ etc. are. misapplication of research.

    What is really confusing is that none, and I do mean none, of the effects you are feeling, tinging, dead spots, phantom pain, staggering, shaking, loss of coordination, spasticity, is really what is wrong.

    You can't trust any sensation to be an accurate somatic evaluation.

    Now that you know that, for example, the itch that has been blinding you, is NOT real, you can start to access the true situation.

    But you CANT just trust the information you are getting from your somatic sense, you have to verify it objectively.

    Then, if its real, you can "pull your feet from the fire" or spark up a doobie like Montel Williams.
  • This disease is nothing that can't be cured, (okay I can wish that the researchers would get their butts in gear already,) but it will probably be some genetic and/or epigenetic environmental factor which kicks out immune system into high gear when it should just stay quiet.

    This disease is a puzzle wrapped in a mystery, wrapped in an enigma, but that is, in large part, because, its NOT like an infection where you are under attack so you take a pill like it was the infantry and you wipe out the infection.

    Its a second order derivative disease.

    What you have as symptoms are in no way related to the actual disease but instead are manifestations of the effects of the disease.

    That sucks doubly... <sigh>
  • Hello Carla.

    what kind of a cane are you using?

    The "traditional" rounded canes are completely wrong for your hand. (In fact if you look at the shape of your hand and the shape of the cane, they are entirely opposite to each other.)

    Google Ergonomic Canes (mine looks sort of like [ http://www.amazon.com/walking-cane-comfortable-... ] and its well worth the US$35.00)

    Getting better is something else.

    It can require that you change your diet (that can be enough if your not too badly affected and you have relapsing/remitting MS.) It should taste good too. :-)

    But I'm not a nutritionist and I'm certainly not a medical doctor.
  • My cane is by Medline. Its not rounded and it folds (great for restaurants, airports, public transit, etc) Its pretty ergonomic. Thanks for the recommendation!

    My diet is very low carb, and free of grain, sugars, soy, processed foods. I do this mostly because I have insulin resistance and cannot partake in those foods.

    How do you eat?
  • Fortunately for me, my wife is into eating all kinds of healthy food. She is also the better cook of the two of us, so she does most of the cooking.

    I eat very well, consuming almost no beef but some chicken, some fish, some pasta, some cheese, lots of berries, fruit and vegetables. (I sometimes sneak in some buffalo, some caribou, some venison, some duck.)

    Just no processed food, ever. (That crap'll kill ya.)

    The diet is varied, spicy and never boring.

    The only problem I had in the past, about 25 kilos ago (50 pounds,) was one of being too fat.

    Much to my wife's chagrin, I lost the weight and got a new "set point" and I now weigh 85 kilos (180 lbs,) plus or minus*.

    * Like Nicole Hollander, speaking through her character "Silvia," says: "My weight is always perfect for my height, which varies."
  • Thank you for the updates! Its been a while since I've heard from you and glad you are doing well. I hear you on wanting to continue some normalcy in your life. Being on disability that recently got extended for the third time is definitely a change that I will just have to roll with. Its all about the lemonade!
  • yeah, i've been making a lot of lemonade lately, which is why i've been such a slacker with the blog updates. summmmmerrrrrrr whoooo! heh. ;-)

    you own your own business, right? does that mean you work from home a lot? is that still really difficult? i sometimes wonder what that would be like, if i had to quit going to work and be a freelance writer (provided that my fingers can still type).

    xo
  • Yes, right now I do work from home on my business. Its still difficult some days, but at least I can rest when I need to, and not have to "show up" for anyone. It also helps for keeping up with doctors appointments, etc without having to be accountable to many people (my employer and co-workers). It has it advantages.
  • well, that's good that you can make your own schedule. flexibility is a major plus when dealing with this disease--or any major lifestyle curveball.

    showing up to work is hard some mornings--i've been getting in later and later. but then i've never been a punctual morning person. and i have a lot of meetings where i have to stand to present my work, which sometimes means i have to cling to something to steady myself (and hope no one notices). but i like my job and don't want to stop or slow down.
  • A "tingly feeling" is one way to describe it. I used the analogy of "noisy skin" because of my background in audio signal processing.

    I also describe the disease as MS taking wire strippers to my nervous system.

    I take a very mechanistic approach to the effects and affects of MS. It helps me cope.
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