BBHwithMS

"Inappropriate Momma, Recently Diagnosed REDNECK, MS Survivor, Keeper of Spanky

Some of you that “know ” me (either for REAL or through other social media outlets) might know that I recently got a NEW badge to hang on my “wall” of things that define me.  I was screened and approved to be a Patient Advocate for Biogen Idec as a voice for Tecfidera… imagine THAT!   And YES they DO know about this blog, my potty mouth & my potty issues and some have apparently even read some of it!?!  For ME, this is HUGE, HUMUNGOUS, GINORMOUS and simply GRAND!  It is a step.  A step towards what I ultimately want to DO – to become a VOICE for MS (and yea, I know, imagine ME wanting to talk.)  I want to find any and all ways that I can reach out and meet others with MS – to share stories – and know that I am a better person BECAUSE I have MS and continue to share my experiences with Tecfidera and all the other stuff that comes with this fantastical disease.

And I had my first program, last week!  Deep breath.  I was not THAT worried about the speaking part – shockingly enough- I like talking – to one or 50 (I haven’t gone much over that yet, so can’t say if I have a cap with how many can be in the audience – but hey, bring it on and let’s find out IF I do:)  Part of the nerves stemmed from just the simple logistics of it all.  To start, it was NOT here in Washington state, but rather, my first shot at this required me to travel, on a plane.  I don’t MIND plane rides, AT ALL, but being the mother of three & a child that went through a “traumatic” experience of my family nearly missing our flight to DISNEY (due to car problems) I take travel PLANNING very seriously.  The key word being PLANNING – like ADVANCED planning.  I am not one that takes ANY trip lightly.  Even a simple weekend camping excursion requires I have at least a few days advance notice, to make sure that I have every possible thing ANYONE in the ENTIRE campground might want or need, from food, to clothing, to life-saving items in a massive first aid kit.  I need to be prepared.  So when even THINKING of getting on a plane, in MY world, that requires weeks/months of preparation.  Making reservations are always at the TOP of the to-do list, just under- where we are staying, just because with three kids, hanging out in the airport, a train station or the side of the road, doesn’t go over so well.

So when the week before hit and I had been asked if traveling to Montana might work and I said yes, I expected some sort of confirmation on this, fairly quickly.  Then the end of that week was upon me and I still hadn’t received ANYTHING that confirmed that I was in fact the Patient Advocate for the program.  The saving grace through all of this is that I did have contact with two women that work for BIOGEN, that assured me that the information was forthcoming.  Unfortunately neither were the ones actually putting the logistics together and so neither could definitively say “YOU ARE ON.”  So I waited….and waited….and waited.  Being a single mom (with THREE kids) with a full time job (AND a dog) leaving, even for a day, is not easy peasy.  I made the arrangements that were necessary: KIDS: check, WORK: check DOG: check.  BUT nothing from the people that were supposed to provide the confirmation and give me the information.

UNTIL LATE in the the FRIDAY before.  I FINALLY GOT AN EMAIL TITLED “CONFIRMATION” – Just what I had been waiting for…and so I quickly got on the phone to call their travel agency.  OK  – quick didn’t really matter, as it seems they were backed up.  After being on hold for about 45 minutes, I spoke with a representative- and booked my arrangements to be in Montana the following Monday (just 2 days away!!!)   YEAH!!!!

BUT OH SHIT…I NEED A SPEECH

Something to say to all the people that have chosen to brave the 20 feet of snow on the roads – isn’t that what Montana is like?  But really, I had been sitting around, more concerned over WHETHER I was going then with WHAT I would actually say.  Now that the first had finally been confirmed, I need to get on the second.  I was not that worried about speaking in front of people (which I know is a really big deal for many) and I have thought a lot about what I would say if ever given the opportunity.  BUT now it had come down to putting  “pen to paper” or at least typing it out, in a cohesive way, that would hit upon reasons to listen and things that touch upon a wide array of circumstances.  My audience would likely consist of a variety of people; some that have just found out they have MS, some that have had it for 20+ yrs, people that are 20 and others in their 60s, some are already taking a DMD and others that are considering Tecfidera.  You get the point, people of all ages and walks of life with NOTHING in common – except for having MS.

So I traveled to Montana.  It was a pretty crazy ass trip – only when considering the amount of time I was there.  I arrived at 4 in the afternoon, got to the hotel at 5;15, registration for the program started at 5:30, so much for changing clothes or having time to do ANYTHING but go pee, spoke from 6-6:30, listened to the neurologist talk and then field questions until about 8:30, wrapped up and helped the local ABM pack up. 9:30 I was seated at the bar, ordering a salad for a LATE dinner and a cold beer. 10:15 paid my bill and headed to my room.  10:45 lights out.  4:00 am my alarm goes off, 4:05 my walk up call comes, 4:10 my phone alarm goes off (YES I was a BIT nervous about NOT getting up) 4:45 on the shuttle BACK to the airport.  6:00 am flight takes off, 7:15 am land BACK in Seattle 8:40 am the taxi drops me off at the front door.  9:00 was back at my computer working!  WHEW!

BUT you may notice that I breezed over the actual speech, just crammed it in there from 6-6:30 between registration and the talk by the doc.  That isn’t because I totally BOMBED.  It’s just because in MY eyes, I did just kinda so/so.  I am FULLY aware of the fact that we ARE our own WORST critics and that I was being hard on myself but in my mind and in my eyes, that is OK.   The things that made ME feel it didn’t go so great were more than likely NOT noticed by the 20 people sitting in the lovely conference room eating their meals of rice pilaf and chicken.  It was ME, and how I was feeling about it that made me feel disappointed.  I remember way back when, before I began shooting out babies, I LOVED to talk in front of an audience.  It was like a high for me, I couldn’t get enough of it.  BUT standing there behind the wonky, flimsy podium in a hotel in Somewhere, Montana I definitely did NOT have that feeling.  I wasn’t a nervous wreck but I wasn’t calm cool and collected, and THAT is what I expected.  WHICH in hindsight was pretty stupid of me.  After all, even IF you do remember how to ride a bicycle after 20 years, pretty damn sure you are going to be a bit shaky on your first ride.  And so that is what it came down to.  I wasn’t pleased with it because I was shaky.  But practice makes perfect and that just meant to need to work on it and get my “smoothness” back.

AND the drug company, the representative that was there with me for the evening, she was kind and full of words of encouragement and said I did a fantastic job.  When I got back to Seattle and the ABM here that I have gotten to know called and SHE said I had gotten a glowing report and that she had been told I did a GREAT job.  And then the woman that did the scheduling and training called and said I did a nice job and that they wanted to put me on the schedule for a local program this week.  SO it seemed that I REALLY did do OK…that I DIDN’T BOMB – and that I would have more chances to make those improvements and get better and better.  UNTIL – I had lunch with the ABM, and THEN I got a voicemail from the representative in Montana, and I got an email from the scheduling/compliance gal….I had done ‘SOMETHIING’ WRONG…and I KNEW what it was, even knew I had done it….actually did it consciously, with thought AND intent.

ANYONE VENTURE A GUESS WHAT THE THING THAT I DID WRONG, WAS?

I am guessing my mom might know….and alls I can say is….sorry mom.  I dropped the F-BOMB.  Right there, in middle of Somewhere, Montana, while talking to a room full of people ranging in age from 20-75.  And I KNEW before I even started to talk, that it was something that I had to decide.  To say it or not say it.  And obviously since I got the lecture over lunch, the voicemail and an email, I decided to drop it.  And the funny thing is that all three of those women, were almost apologetic to have to be discussing this with me.  Each one said that they understood that they had told me (encouraged me) to just be myself, and to tell my story, AND as I pointed out in the beginning I DID tell them about my blog, made sure that each one had visited and KNEW just who they were signing on.  And truth be told, I really do believe that in some small way, they hoped that I  would continue to say it – but each had to go on record with being able to say they told me NOT to.  Heck, I had 5 or 6 of my audience members come up to comment about how refreshing it  was to finally have someone that seemed REAL to them (I guess REAL Montana men do swear.)  BUT, although I was given a “talking too” I wasn’t fired.  As I mentioned, they still put me on the schedule for this week.

THAT program was last night – and I am going to post the EXACT speech that I gave, for anyone that is curious to know “my story” that I am sharing and anyone that wants to know just HOW I got around the F-Bomb and yet, still didn’t feel I had compromised myself or my story!

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3 Responses so far.

  1. Matt Allen says:

    I was a patient advocate for Biogen and we met out in Georgia last month. This was for no one medication in particular, it was more for them to see what patients need, and though my only intention was to do what I could to help other patients, I feel that many people turned their back on me since then! Some people said I had turned to the “Big Pharma” side which is funny because I felt like others there were starting to get the feeling I was super against big pharma, I mean, most of us were but, I guess maybe I voiced it a bit more? I sure hope you dont get that effect!

    • Meg says:

      Matt,
      Sorry for the delay in posting this comment and replying. I thought I had managed to do it on my phone last week, but now that I am back here on the computer it seems that it didn’t work. I am sorry to hear that the reaction that you got was less than positive. I have given what you talk about quite a bit of thought, as I don’t want to alienate anyone. BUT then I figure, what I want to try and convey to anyone that does follow my blog is that I am coming from a place of NO judgement. Meaning, NO ONE’S way is right or wrong. We each have our own shit to deal with, and NO ONE but YOU can know what is the right course of action; what will work for YOU. Since I have chosen the path of trying Tecfidera, I want to simply SHARE my experience, and that is NOT to say that it is for everyone. Just as I don’t judge those that chose to NOT explore the “Big Pharma” options, I would hope that they would give me the same courtesy. So far, that IS in fact what has happened, as I have only had positive comments/feedback and emails.
      Fingers crossed that it continues this way. Hope all is well for you!
      Cheers,
      Meg

      • Matt Alleng says:

        Glad to hear! That’s what I try to tell people; What works for me may not work for you and what works for you may not work for me – There is no “one size fits all” shoe here. Everyone’s MS effects them different;y and everyone’s “remedy” is a little different. I really wish people who accept that haha.


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