Category: Random Thoughts

we had a great time.  my t-shirts were a hit and there were actually more people to support me than last year, some of whom already told me to put them down for next year.  Now!  if only my photo tek outta will send me the pictures ;-), i’ll post some.

ok.  so, i went to Dr. Gilbert yesterday.  first thing he said to me when he entered the room was, “so…you ready to make some changes?”  “oh yeah, you know it” i responded.  we talked about the length of time that i’ve been on Tysabri, he asked me if i thought it has been working to which i responded, “i suppose so because my MRIs look good and i really can’t think of a time recently when i had any kind of relapse.  i just wish it had helped my walking” but i guess you can’t get EVERYTHING!  so since i’d learned of the rebound effect yesterday, i asked him about that and i must say i was really surprised at his response.  I expected to have a small battle about it with his blowing it off because it’s not a proven phenomenon but instead he responded that he’ll put me on 2 sessions of steroids 3 weeks apart to try and stave off anything because he wants the Tysabri to completely flush out of my system.  so….bottom line?

• i go back on 5/10 and 5/31 for steroids (i’ve done the intravenous steroids before and had good results (the pain that i was given it for went away)) so i’m hopeful (because ain’t much else i can do) that these next 2 sessions will be ok and then my Tecfidera will arrive in the mail in early June

so then the nurse comes in to sign me up.  she was very excited to hear that i’d already ordered the CBC …if fact her exact words were, “thank you for being proactive!”.  in my mind, lady, u eh know the 1/2 of it; the less number of times that i have to be stuck for blood the better.  Oh and by the way, i guess since las week friday was my last infusion, my body decided to go out with a big bang because boy did i make those poor nurses work!!!  anyhoo, she went thru a few things with me…

• how to mitigate and minimize the side effect
• sign here, sign there

i talked about whether it’s better to be blissfully ignorant in my last post.  i am convinced that that’s the way to be – too much knowledge is a helluva ting; i’ve always felt this way.

i was reading another blog this morning and ran across something called the “tysabri rebound effect” – never heard of it before.  let me just say that apparently there is no scientific research/hard and fast facts  backing this up but still it’s “out there”…

so essentially, some patients who came off tysabri reportedly experienced a HUGE relapse and shown increased lesions on their MRIs about 3-6 months after.  great!  is that something for which i may need to brace myself??? steups!!!  doesn’t make sense getting my panties in a bunch for something that i don’t know for sure will happen but u catch my drift about being blissfully ignorant don’t u?

The first time i’d ever heard this name was on the news on Monday(?).  Annette died from complications she suffered as a result of Multiple Sclerosis.  So, i decided to look her up and see what the complications were.  i never found out exactly, but i did find this video and after looking at it, i really don’t need to know what the complications were.  Her story was heartbreaking and i wondered afterward if i should have watched it (even tho, i couldn’t/didn’t want to stop watching).

Every time i see things like this/hear other people’s stories, i wonder…do i want to always be realistic and know everything about the disease and hear these extreme stories?  is it better to be blissfully ignorant of what COULD potentially happen?  the reality is that this is Multiple Sclerosis – at its absolute worst yes, but this is the disease!

take a look if you want; it’s bout 10 mins long…

BG12 is now referred to as Tecfidera.  As i mentioned before, i go for my “juicing up” on Friday and even though i won’t see my doctor, i’ll either see A doctor or a nurse practitioner so i’m definitely going to get as much info as i can from them and if possible start the ball rolling.  a complete blood count must be done prior to starting, so i’ll suggest to whomever i talk to that they might as well order it.

My findings:

• there’s no waiting period after stopping the last therapy before starting it…that’s good.  that way i can start it sooner rather than later because the Tysabri won’t have to be out of my system
• there is a $10 copay program.  the site states that there is no income requirement, no time limit and no waiting (enrollment can happen as soon as you go on it); this is good news…hopefully alot of people can take advantage of this
• moderate level of alcohol has no effect on it or it’s workings.  WOOHOO!! it’s no secret that i enjoy beverages of the alcoholic kind 🙂  the day that i am told that i can no longer drink is the day that this shit will become unbearable.  the question of how the drug will interact with the alcohol is MOST important – i don’t care, it is what it is

so my recent “happenings”…my right thumb moves on its own.  just a small movement, like a (continuous) flicking motion (about 2 mm or so).  last week when i started noticing it, it actually happened all day long from that moment.  it’s also quick movements too…it’s annoying but nothing else.  actually, honestly it isn’t happening as much anymore.  is it the MS?  hell if i know, but it insist on hanging around, so it’s getting blamed!  it’s extremely annoying when i play this game on my phone because i would position my thumb where i want a ball/thing to drop and then my thumb jerks and the thing goes where i don’t want it to go – steups!

One of the reasons that i stopped writing for those couple months too is that i got tired of writing about being sick and falling!  remember i said at the beginning of 2012 that i would keep up with my falls?  well i did and it actually was 12 – i think…i’m almost sure it was 12 (ugh! great!  1 a month).  i was doing rhell good this year, for the most part, and then fell twice last weekend.  so far for this year it’s been 3 but i can honestly say that i can only blame the MS for 1 – the other times, i was doing shit that i should not have, altho maybe without the MS, i woulda been able to “catch myself”?  i’m not keeping up this year (it could get depressing after a while) but it has been 3 (off to a bang up start).

i go in for infusion #38 next week; i plan for that to be my last – WOOHOO!!  i won’t be able to start the ball rolling to go on BG12 (it actually has a new name now) i don’t think because i won’t actually see my doctor but i should be able to get all my questions answered so that i can hit the ground running when i do see him in May.  We’ve already spoken about it too so I expect no surprises/push back/pressha from him; he actually wants me to switch.

anyhoo, ah gone so…have a great weekend everyone!