ChatMS: 2/29/2016

Happy Leap Day!

Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?

I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis.  Like my depression, I gather many will be surprised, as this is just as invisible.  If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?

Q2 - What have you done in the past to raise Multiple Sclerosis awareness?

This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!

Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?

Rats - no.  But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!!  :)

Q4 – What do you think is the best media to spread MS awareness?

Face-to-face, absolutely.  I have spoken with many patients about my MS and been thanked for opening up about my struggles with them.  Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness.  When we battle our illnesses together, we become a team, and they trust me more as a provider.  I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.

On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course! 

Q5 – When asked, how do you describe Multiple Sclerosis?

I say that my brain likes to eat itself!  I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin.  When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber.  So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis.  I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering.  I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.

Q6 – What items can be frustrating when raising awareness?

"But you look fine, so it can't be that bad."
You have no idea what this actually feels like.  I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all.  On my great days, of which I usually have many in a row, I forget about the MS and just live.  It's an excellent feeling.  But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it.  I've felt intermittently sick since late 2009.  Before that, I was a generally sick kid, always getting sinus infections and having ear problems.  I'm really ready to not be sick anymore.

The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it.  When I start telling people I know about my disease, I'm sure they'll start to care.  But you have to have a reason to get behind something.  People usually have a reason to get really 'into' wearing pink for breast cancer.  I want more people to find reasons to wear orange!

Q7 – What would you consider a successful MS Awareness effort?

Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research.  And not compare the different people they know to me; have a healthy respect that everyone's case is different.  I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS.  Everyone's case is different.  I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.

Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?

I'll admit, I wish I did more to spread awareness in this respect.  But I have so rarely been asked for 'more information,' this feels like an empty question.

That's all, folks!! Have a great week -
MSloan 

Chat MS - 11/30/2015

This last Chat MS was all about MS research, a topic dear to my little science heart!  Please don't hesitate to copy/paste to your own blog to keep the conversation going!

Q1 – Do you keep up to date with latest #MultipleSclerosis news and research articles?

I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments.  I do of course read the ones that get distributed by the National MS Society.

Q2 – What is your “go to” place for the latest in #MultipleSclerosis information?

National MS Society and, believe it or not, Twitter.  Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters.  I recommend it to anyone looking for regular answers and a real community.

Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?

Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me.  However, my dad hears things all the time and is really excited about them for me.  He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month.  My dad doesn't talk to me on the phone.  So yeah, he thought it was a pretty big deal!

Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?

ABSO-FREAKING-LUTELY.  I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder.  I enrolled just after my diagnosis.  It is SO important to participate in research, even if it isn't a clinical trial.

Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?

This is the sad reality of science.  Single studies are not enough to effect real change.  Some studies look great on the surface, but repeat studies do not find the same thing.  There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.

Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?

I think this is excellent!  But right now - - I am a bit skeptical.  I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.

Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms? 

Both of course!  Stopped progression is incredibly important to me.  More research on medications and the JC virus.  More research on effective medications that don't cause OTHER problems.

Q8 – Do you think we will see a #MultipleSclerosis cure in the next 10 years?

.... realistically?
No.  I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses.  Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.'  There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing?  Or is it because of the medication?  This is why MS is so hard to pinpoint.

Thanks for reading, all!  MSloan

#ChatMS

I just participated in my first Twitter #ChatMS - it was excellent!  I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world.  It's so great getting to know all of you as we share in this journey together.

I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy?  WHY NOT, I SAY!

So the next post will be the progress on Squishy thus far.  Love to all! And thank you for participating, you make me brave!
Miss Sloan :)

twitter.com/revelwoman