the Last Night; my Support Group Part III

Last night was the final session of the workshop.  The group is going to try to keep it going informally just so that we can meet and keep in touch with each other. 

  • Last nite, 1 of the chicks said that this was the first workshop/seminar that she’s been to where everyone was at the same level. She’s been to other workshops where people were in wheelchairs or the MS was so advanced that she didn’t feel as if they were “like her”.
  • This was the first time EVER for me that i have even been around other people with MS…I know now FOR SURE that i’m not alone.
  • We’ve found that many of us have had doctors who insisted that whatever we were going thru at the time was not the MS but at the same time, couldn’t tell us what it was.  That’s most frustrating!!!  Now we can bounce ideas, symptoms and thoughts off each other. 

U know they say that “misery loves company” and for those reasons alone, we are definitely going to meet informally going forward.  The “official” workshop is over, but we all live in the area and have exchanged numbers and email addresses so that we can make it work.

I now have Support Group Part III.

Ampyra Updates

So, I’ve found out a little more about the new medication.  Remember the last thing i discovered was that it would cost $1056 for a 30-day supply?  Well i was on the manufacturer’s site yesterday and found out that:

  1. Some patients meeting a certain income requirement may be able to get it at no cost! (i can dream on about this – i am almost positive that i won’t qualify)
  2. Other patients who are on Medicare Part D (as opposed to A, B or C?) may be able to get some kind of financial assistance
  3. Yet another subset of patients with private insurance (this is where I fall) may be able to get it for a copay of $40

WOOHOO!!!  I think that i can handle $40 a month for my medication.  The drug is also only going to be available thru specialized pharmacies and will be mailed to patients – it won’t be available at ur local CVS.  I already use one of those pharmacies so here’s hoping that mine will carry it and it won’t be too much of a hassle for me to get it.  Altho, i will say that NOT having to fork out $1K a month is plenty to be happy about even if i have to run around the place like a chicken without a head to actually get it mailed to me.

There is also a Webcast being held on March 17th that i plan on attending; hopefully some of my questions will be answered there.

40 days and 40 nights…

So…I’m not catholic and we never gave up anything for Lent while i was growing up, but 1 year about 8 years ago or so, i decided to give up cigarettes for Lent…i did and never started back smoking!  Ever since then, i decided that i will give up something every year.

For the past 3 years or so, it’s been meat.  I take my hats off to those vegetarians out there.  While it has gotten easier over time and i have learned that i don’t always have to eat meat, there is no way i could NOT eat meat for the rest of my life – no way in hell, actually!  Anyhoo, so this year, i decided to “take it up a notch” – i have given up meat AND beers.  It’s been going well…altho, this past weekend, we finally made it up to the N. GA mountians and while everyone was chomping down on their BBQ chicken and hotdogs, i was eating Tilapia (cooked on the grill; quite good) and a bloody vege burger. 

I cannot tell a lie – the vege burger was edible.  The chef said that he couldn’t really tell whether or not it was cooked because the appearance NEVER changed from the time it got on the grill to the time he took it off – WDF?!?!?  It was full of proteins (good thing i spose) but it didn’t really have much of a flavour and it was kinda rubbery/hard/not the best texture. 

Now why in the name of EVERYTHING good, would i give up pork to eat that shit on a regular basis?????
it’s been 1week…i have 4(?) more to go…OYE!!!!

*Sigh*

i like to speed!

there i said it…i do…i can’t help it sometimes…the car just goes fast and i let it – driving slow is something that i just can’t do, even if i have cruise control on.  I tell allyuh before, that in my car is one of the few places where i feel normal and can actually forget all about this blasted MS shit!

i got a speeding ticket this morning.  As soon as i passed the torturer, i knew that he got me.

82 in a 55!!!!  

how much is that going to cost me?  how many points on my license???  ***UGH!!!***

I cyah be vex/upset/any of those kinda words, i was speeding.  I actually thought that i was going 84, so i guess i actually ketch ah lil break 🙂

the Seminar

I must say, i’ve surprised myself at the Wellness seminar.  I am shy (others may beg to differ, but really i am) but I’m so much more vocal than i usually am and it’s so easy being open and honest in front of the group.  Next week is the last session and i will admit that i will probably miss going to them; I’ve also learned sooooooooooo much!

Last nite’s session was perfectly timed…the discussion was regarding “starting a new treatment”.  While the discussion wasn’t centered around me, most of them know that i am interested in taking the new drug recently approved, so i got some great feedback on what questions to ask my doctor (in addition to the list i already have) and what i should look at/for (wrt: the study done by the manufacturers) to make an informed decision (have to admit, there were some things that i really hadn’t thought about before).

I also learned about this website: http://www.needymeds.com/.  This is a site where individuals can actually sign up to receive coupons for medication directly from drug manufacturers and just general assistance for medication costs.  Who the heck knew that something like this existed???  Certainly NOT me! 

Apparently, drug manufacturers are supposed to give away a certain amount of medication annually to continue receiving federal funding…this is the site on which uninsured and underinsured individuals as well as those who just need help with the cost of medication can apply for those meds…

food for thought, cool stuff and good information to have “in ur back pocket”!

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