Multiple Sclerosis & Me

I’m hating MS for Matt!  Matt’s 22 and he’s trying to be positive thru it all but (understandably so) he’s getting tired of the shit!

this disease really is a BITCH!!! (in fact they all are)

i’m playing that waiting game again – patiently waiting to hear the word that the new drug manufactured by Biogen has been approved by the FDA (it was submitted earlier this year for a “fast tracked” approval – 10months time which would mean that we should be hearing something any day now).  I’m this close {-} to deciding that i will switch to it once it becomes available just so that the dark cloud looming over me right now (the risk of contracting PML) can go to hell!  of course, it will be a new drug…so there are risks there too but…

I really do hate to have to make these kinds of decisions.

yesterday my phone rang; it was Cmus and he said that he’d seen something about “something called BG12 on CNN that has proven to slow down the progression of MS so i didn’t know if u knew about it, so wanted to share…”i instantly got excited because i thought that it was approved.  Alas, it hasn’t yet but i couldn’t believe that i’ve reached the point now where i get excited because new drugs may be available to me – whoa!  when did that happen, funny how priorities in ur life change as things happen.

even tho the drug companies have made progress over time, it’s unfortunate that all the available therapies are only for patients with the relapsing remitting form of the disease.  there isn’t anything available for patients with the progressive form.  I’m assuming (i don’t know) that they can take the other drugs that some of us take (Baclofen, Zanoflex etc) but there are no disease modifying drugs available for them.  it’s time that someone/a company takes that on.

anyhoo, so more to come…u know i’ll let allyuh know how things progress.

after reading I Hate AC, H-oye emailed me and asked me if i do deep breathing exercises or anything along those lines.

Breathing – it seems simple enough right…i mean without breath i wouldn’t be writing this and u wouldn’t be reading it; simple right?  thing is, DEEP breathing really goes a long way to help when i find myself in awkward situations.  years ago in yoga, the instructor would instruct us to breathe using our bellies, belly breathing.  Deep breath in(to) ur belly (thru ur nose) – so ur abdomen is expanded instead of ur chest when u take that deep breath.  this is believed by some to be a healthier way to get our oxygen and is sometimes used as therapy.  well the truth is, it really works.

Anytime i find myself in a weird position or i want to calm myself down (say, after a fall and my body seems to stop working), a few deep “belly” breaths usually does the trick and once i’m calm, things go bad to “normal” and i can move again.  My “problem” is that i haven’t made a routine of it.  I need to just set aside some time daily to practice OR better fete, incorporate it into some of my daily routines and just spend a few minutes breathing before and/or after i do certain things.

Deep breathing really comes in handy when i have to deal with people on the phone who screw up my name and such.  the other day i was talking to a woman trying to get an explanation of  something that had happened a few minutes before and she said, “u must be confused” and right at that point, i lost it and was bout to cuss her ass out but instead i took a few deep breaths and i calmly told her, “don’t tell me i’m confused” and continued the conversation (it was MS related; had to do with my shipment of medication, so i had to get the situation resolved).  i was so proud of myself and told G when she got home that she too, would have been proud of me because it’s so hard for me to keep my cool in some situations.

Anyhoo, try it some time…Deep Belly Breathing – it works!

so the the drug companies appear to be making some serious progress in terms of research..a new disease modifying drug (another oral option) has been approved by the FDA – if only they could find a cure…

i think back to when i had the conversation with the woman (wasn’t my doctor) about my treatment options and she told me that i had 4(?) options that were all injections and i couldn’t believe that i had to choose 1.  nowadays, patients have so many more options and can pick whether they want to endure injections vs popping a pill which is so very good.   Of course i’ve mentioned this before but without root cause, it’s hard to find a solution.

• am i thinking about switching? nah…i’m holding off for yet another one that was submitted for approval earlier this year.  
• will i actually switch at that time?  don’t know, but it will definitely give me some more food for thought and it’ll be decision making time yet again (stay on Tysabri since i’m JCV+ or start a brand new drug) – ugh…nothing is ever easy.  

the drug is manufactured by Biogen (the same company that manufactures Tysabri) and was submitted in the hopes that it would be fast tracked for approval.  it’s also thought to be more powerful than Gilenya – not sure how it compares to this new one, so we’ll see.

Ah gone so…

well i guess the people knew what they were saying when they said that, “it’s the best cane i’ll ever own”…i have to admit that i haven’t used any of my other canes since i got it cept to go out; it just isn’t snazzy enuf for me to go out with 😉

so of course there was a reason for my last rant.  it’s funny tho…after i wrote it, it occurred to me that i don’t ever think of myself as “being sick” altho i guess i am.  Anyhoo, so we gearing up for Miami carnival so we have to figure out where we staying, who staying, which fetes we going etc.  and naturally, my needs have to come into play.

• if we staying in a hotel, remember i need the handiapped room, 
• if is a house, does it have a walk in shower?
• where are the fetes, does it make sense for me to go?
• how far is the boat / how big is the pier in which the boat is docked? 
• i can go on and on…