Today

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)

the Waiting Game

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.

Breathing

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!

Leaps and Bounds

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.

how would they be able to cure it if they don't even know what causes it in the first place so until that happens, i'm not holding my breath for a cure.

• 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...

They Were On to Something

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...

now don't get me wrong, it's not a problem for anyone else involved (for me it is sometimes), but like i said, it's such a big inconvenience.  luckily, most of the venues have not changed over the years so we kinda know what we working with but sheeeitt - i just haven't really gotten used to having to make sure that things are in order for me - it's something that i know i have to do (and so does everyone else around me; it's just a given - noone thinks twice about it) but doesn't mean i have to like it.  

GRRRRR!!

i hate being sick; having MS!!

that's all; no funny stories, no lamenting or feeling sorry for myself.  i just hate it; it's a pain in my ass and a big inconvenience.

False Positive and...

i went for my "fusion/juicing" on friday and was told that they are going to retest me for the JC Virus to rule out the chance of a false +ve test.  I told the woman (in my usual pessimistic way) that there was no need to retest, in my opinion, because it'll come back +ve again- no false results round here.  steups...not sure exactly when i'm going to get the results, but anyway.

so i've noticed something that happens and it kinda scares me but...with anything that happens (more than once and) out of the ordinary, i take note and run it by whomever i see when i go in for the infusion.  i've noticed this 3 times so far - don't remember the first time it happened, but definitely took note the 2nd and 3rd times...

someone will say something to me and i think of something completely different - WTF?!?!  like i said, the 1st time it happened, i was having a conversation with G and i only remember saying to her, "oh, u said (whatever) and i was thinking (whatever)...the 2nd time, someone said, "yeah chemotherapy is not good for cancer patients" and i said, "really?" and in my mind i just didn't understand how the 2 even went together.  why?  because i was thinking of CHIROPRACTOR.  the 3rd and most recent time, someone said to me, "yeah i'm flying into Ft. Lauderdale airport because it not that far from Miami".  he clearly didn't notice the "deer in the headlights" look that i gave him (because he jes kept talking) because i was thinking, "r u a mad man, y would u fly into Orlando to go to Miami???" (for those who don't know, Ft. Lauderdale and Miami are about 30-40 mins apart where as Orlando is bout 6hrs north of both).

Friday when i went in, i ran it by Beverly (hopeful that there was no relation and it was just a fluke) and of course, it's an "MS thing".  it scares me; it's hard enuf to deal with the physical problems that i have, does this mean that it's starting to attack my cognitive thinking and i'll have to deal with that too or is this just a flare up that will last for a specific length of time and then go on its way????

*sigh*