In this video I talk about discussing your condition with other people, and where you might need to be mentally before you’ll feel comfortable doing it.
Have you ever noticed how the “stories” you tell yourself can impact your attitude, your energy levels, and ultimately your health and recovery? I’ve thought about this a lot, so I decided to talk about it!
What’s your favorite “story” that you keep going back to? The one that comes up every time you start feeling down or under the weather? Once you notice it, try to rewrite it to make it more positive. Just change the wording – instead of “I’m too tired to do this” change it to “I am really looking forward to going to sleep as soon as I finish this task.” Rewrite your story with yourself as the Hero! Why not!?!
Haha! Yes, I had notes, and I’m looking down at them probably more than I should. I use notes a lot since I sometimes have a hard time keeping my train of thought going in one direction, so when I have something specific to talk about, I write parts of it down first. Hopefully I’ll get better at this as time goes on!
This is so cool – I’ve connected with another lady who has MS and runs a fantastic site at http://www.brassandivory.org. (Don’t worry – if you click it’ll open up in a new window and you can still look around here later.)
Anyway, she links other blogs to her site, and she linked me! How cool is that? She also runs the “Carnival of MS Bloggers – a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis” (her quote) that I’ve submitted an article for.
This is her blog past linking “new MS bloggers” to her site:
This may seem narcissistic, linking from my blog to another blog about my blog, (say that five times fast) but it just made me feel really good about reaching out to people with my blog, and knowing there are people out there who appreciate it. So yay!
Honestly I’m not sure if this is a good idea, but the day before yesterday someone emailed me through my “Contact Me” page and my reply email isn’t getting through to her email, so I’m posting my reply here. I want her to have this information and I don’t know how else to get it to her if I can’t email her. I would probably give similar advice to anyone who was wondering about MS or if they might have it, so maybe it’ll help someone else out there.
Thanks for reaching out. I can’t even imagine how frustrated you must be.
I’m not a medical professional, but yeah, your symptoms sound familiar. What tends to really define MS, though, is the presence of sclerosis (white plaques or scarring) in your brain, so if nothing is showing up on your MRIs I’d probably assume it’s something else. Only 5% of the population generally ends up with a false negative or a false positive. When was the last time you had an MRI of your brain? You said the neurologist sent you for one of your back? Were you experiencing weird things going on at the time of your MRI, or had the symptoms subsided already? Continue reading
It can be really challenging not to let it all get to you. Here I lay out a couple of easy tips on how to “conjure up a positive attitude in the face of MS weirdness” – they work for me, so give them a chance and they may just work for you!
Haha! Watching this I see how often I tilt my head back as I talk, and perhaps I should be more mindful of giving such a view up my nostrils! Ignore that please, and just concentrate on the message!
Well, darn! The video is no longer available. Sigh. Well, donate to the MS Society anyway, and I’ll try to find more (current) info on this program. Grrr.
This is amazing! I had no idea that the MS Society of Canada has a scholarship program for people or families with MS. Since the condition can be debilitating on so many levels, it’s excellent to see the Society working with Billy Talent and Friends to help people who may not otherwise be able to afford post-secondary classes. I’m so proud of the MS Society! And of Aaron Solowoniuk, the drummer for Billy Talent, who worked with the MS Society to set up the scholarship program. Take THAT, MS!
I recently had a chat with my massage therapist about these headaches I get behind my eyes. Before this conversation, I would freak out every time I got one of these headaches (which was a lot) because every time I’ve had optic neuritis it started with one of these headaches. Luckily, my massage therapist had another option for me, so now I don’t need to freak out every time one of these headaches pops up! They can be muscle related, and in this video I explain all about it.
I am so spoiled, so incredibly lucky. I am involved a clinical trial for MS and that means I don’t have to pay for my medication. At the beginning of the trial, I asked one of my nurses how much something like this would cost, if I had to pay out-of-pocket, if I wasn’t involved in the study. She told me about $80,000.00 and I thought my eyes were going to pop out of my head. I’ve lived in houses that cost less than that!
My heart breaks for Jason Da Silva, and once again I don’t understand the American Health Care system. Why do they feel so threatened by a system like we have in Canada? What’s so awful about allowing people access to free (or at least subsidized) medical care? Why do so many American people and corporations seem to think Obama is the devil for wanting to create a system like ours, in the US? If you have any ideas, tell me, because I’d sure like to understand.
Caution: Fluffee drops the F-bomb in this video so if you are offended by the F-word DON’T WATCH the video. Just go to the link I’ve posted below to donate to the MS Society of Canada directly if you want to help support their efforts against MS.
I love “Project for Awesome!” Fluffee is a bit of a goof but he does a good job of laying out how MS can affect people’s lives. I wonder if he’s sold his piece of chair yet? Or the beanie lol?
If you want to donate directly to the MS Society of Canada, click the link below to be taken directly to their donation page. It’ll pop up in a new window. Spend some time checking out the rest of their awesome site while you’re there, too!
Woot! I thought this was pretty cool. I found this article on “Medical News Today” and I wanted everyone to see it even if I can only show the first two paragraphs here:
First Oral Treatment For People With Multiple Sclerosis Approved In Canada
Novartis Pharmaceuticals Canada Inc. announced that its new MS treatment, Gilenya™ (fingolimod), has received Notice of Compliance in Canada. Gilenya™ (fingolimod) is the first disease modifying oral therapy developed for the relapsing-remitting form of multiple sclerosis (MS) which is the most common type of the disease in adults. Unlike current therapies which all require daily or regular injections or infusions, Gilenya offers simple once daily oral dosing (0.5 mg) in a capsule, providing an efficacious and convenient treatment method for a complex and lifelong illness. Gilenya is approved for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them.
“The approval of Gilenya is a significant milestone for the Canadian MS community,” says Dr. Daniel Selchen, a neurologist from Toronto, Ontario. “Oral therapies have been greatly anticipated by both patients and physicians who are eager for alternatives to injection and infusion therapies. With its excellent clinical trial efficacy data, along with convenience, Gilenya is welcome news for those seeking a new option to manage their disease.”
Please read the whole article by clicking HERE – it’ll open in a new window for you.
I’ve never had a problem with needles (thank goodness) but I have friends who pass out if they catch a glimpse of a puncture on TV. An oral medication would bypass the whole group of self-injection issues pretty handily, I think. There are (as usual) side effects, and the drug isn’t appropriate for everyone, but wouldn’t it be amazing to just be able to take a pill instead of dealing with injections or infusions?
It’s not a cure for MS, but it apparently does slow progression. It lowers the white blood cells, so does that make it an “immuno-modifier” or an “immuno-supressant?” In either case, you’d have to be careful when around other infectious people (like we’re not already!) and you’d have to decide with your doctors if this is the right treatment for you. I wonder why would it only be approved “for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them?” It seems like a simpler treatment than most of the others I’ve heard about.
What do you think? Does this seem like a good idea to you? Is it something you’ll ask your doctor about? Is anyone involved in the Clinical Trial for this medication, or has anyone been put on it through their doctor? I’d love to hear what your experiences are.