Boat Rides

So...

• boatride in NY was standing room only and we know how well i do that!  good thing i didn't go
• boatride in ATL was perfect - good thing i went!!!  

App there were 85 people on the boat and as A put it, if there were 86 people, it would have been too many.  We snuck all our drinks onto the boat, we had room to get on bad and thoroughly enjoy ourselves.

a few pictures....

 

oh, That Positive Attitude!!

Many people have told me, "love your attitude, u're dealing with this really well" etc.  Hell, i wrote about it myself a little while ago - i'm coping with this disease the best i know how...but I can't help but wonder tho, "Am i being naive/just plain stupid?"  i'm not normally 1 to wear rose coloured glasses and see life as a bunch of roses, but i refuse to let My Situation get me down - don't think my friends will let it happen anyway.

Reading about other people's experiences (what i may have to "look forward" to) is sometimes depressing/alarming/scary.  It makes me more determined to fight the shit and fight it hard, but i can't help but think "is my fighting in vain?" - i'm going to PT, taking all these drugs, working out...is it all for naught?

• sometimes i want to stop taking the drugs, of course when i miss a dose i swear i can tell the difference.  
• I will save so much money if i give up my personal trainer - but then I cannot go to a regular gym, do anything on my own and try to walk out of there because that is just a recipe for disaster
• My PT appts. are at 7:30am so that work is not affected (my manager gives me enuf slack as it is - so i'm trying not to take advantage of that) so of course i have to wake up at the crack of dawn to get there on time...fun fun - not so much!!

Would all of that stop the MS in its tracks?  Will they dissuade it from completely consuming me?  How much (if at all) will/could doing all those things slow the progression of the disease?  will my +ve attitude turn into a -ve one or just how long will all this positivity last?

I continue to have so many fears of what the future could hold, what could possibly happen on any given day when i wake up?  what is the MS's plan?

so many questions with so few answers.

MS Really is Bad

One of the things that helped me come to terms with having MS was that "it's not the worst thing that could have happened"...I'm beginning to rethink that...MS is pretty darn bad...okay, maybe it isn't the worst, but it's up there with the rest of the bad things.  i think that what makes it worse than some other diseases is that the cause is unknown, it's unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control.  Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around - not necessarily because i have to pee, but because there is a bathroom i don't mind using available.  I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass - there's no holding it for me!

I noticed that every now and again something would happen to me so i said to G, "you ever had to pee, used the bathroom and then u notice after you're done and u leave the bathroom (mind u) that, "shit!  i have to go again?"  Of course she said no and as usual, we moved on...i chalked it up to one of those things that just happens sometimes i guess.  I subscribe to the MS Society's monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients' not being able to empty their bladders and it hit me, "what the?!?!?! i guess that's what i've been experiencing"  i'd never thought that it was the MS - for once i didn't blame it and it actually is to blame.  When it happens, it's only at nite - i drink so much water (i always say, the only things i drink are water and alcohol, i don't mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite - well when i do use the bathroom and get back into bed to go back to sleep, that's when it give me a nudge and says, "eh eh...we not done yet" so i have to get back out of the bed and head back to the bathroom.

I've had conversations with the MS, "i mean, do u really think that it's necessary to put me thru this????  i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that "oh by theway, u're not done yet" so i have to start the whole bloody process al over AGAIN!!!"  i mean...really?!??!?!  UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don't get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn't the worst, but it sure is damn bad!!

GRRRRRR!!!

To Do or Not To Do...

1/2 of dealing with MS (and i suspect any chronic disease) really is about making good, well informed decisions.  July was a blur to me...i was on vacation, OB was here, I was limin up a storm right thru.  I blinked twice and it was over - time really does fly when u're having fun.  Anyhoo, so this past weekend, i decided i wasn't going to do ANYTHING!  i was going to keep my ass quiet for the 1st time in a month and just stay home and relax...try to get over July.  Of course, errands and normal Saturday stuff doesn't count, so when i finally woke up on Saturday, i jumped in the car and moseyed on down to the barber shop - i have to get my hair cut every 2 weeks, or i'm a stark, raving, mad woman.

The shop i go to is not close but i've been going to this 1 chick since 1995 and she does a fantastic job, so i'm not about to go in search of another barber.  The shop is in a mall; mind you, not the nicest mall around, but for whatever reason, whenever i go down there, it is ALWAYS PACKED!  On Saturday, I actually had to park the farthest away i've ever parked and was actually questioning whether or not i should bother - but again, i'm a stark, staring, mad woman, so i pushed through.   Men give women a hard time about going to the hair salon and how long it takes, but i swear it's no different in a barber shop.  they get their beards groomed, their mustaches trimmed - it's not as long a process, but it takes quite some time and Miriam (my barber) is quite good so there are always quite a few people in front of me on a Saturday - unless i go at the crack of dawn and that eh happenin!  Well even though i was just sitting waiting (i swear it was about 2 hrs on Sat), i was ah lil tired by the time my turn rolled around.  She knows about the MS and for some reason, that day she asked me where i'd parked.  When i told her, she said that she'd get someone to go get the car for me - i could have jumped into her arms and kissed her!  The thought of having to walk back all that way in the 9something degree heat was making me even MORE tired!  I've learned to accept help sometimes even when i really don't need it!

I left the barber shop and went to lunch - a gal has to eat - especially when it's at Eclipse.  As i was leaving Eclipse, i was still feeling a little tired, but had to go get the brows done...so i headed there.  Well i got there, got out the car, took 2 1/2 steps toward the place and decided that it wasn't worth it...nice arched eyebrows vs bussin my ass in the place because i was tired?  i chose to not chance bussin my ass.  i was also supposed to make 1 more turn that evening - instead i entered my front door and set my alarm for the night because i knew i wasn't going another place for the day, not even if they paid me!


P.S. the eyebrows are still not done- ugh!  maybe i'll go tomorrow.

Asshole Drivers

Indulge me...this has nothing to do with MS.

I've owned 3 1/2 cars - i say 1/2 because i didn't pay for Betsey but C&I shared her.

• Stax 1 was written off - i wasn't driving.  
• Stax 2 was hit by an asshole who reversed into it while it was parked.  
• Stax 3 was hit by another asshole who couldn't drive and reversed into the parked car and then was bol'face enuf to tell me that i mustn't park in front my house (did i mention that said asshole didn't even live in the complex???) 

So yesterday, G was stopped at an intersection waiting to pull out when a jackass drove right into us.    When he came out the car, he said, "where did u come from?  where were u?"  uhmm...right here jackass.  Stopped in front of you!!!

I have NO patience for idiot drivers - NONE!!  how, how, how do u NOT see a car that is stopped in front of u?????  in times like these it's good when G is involved because a blood vessel usually bursts in my head and acc to her, I "was coming out of the car swinging!".  she's much more diplomatic and reserved than i.   I think that what really got me going is that the man hit us, i looked back and our eyes made 4 and then as if to say "bite me", he pushed the car forward a bit like he was trying to move us out of the way.  I was on my way to work out and was really looking forward to it to, so that got me going too!

Anyhoo, we are both ok...he got a ticket (woohoo LOL) and truth be told the damage is not as bad as i originally thought.  Of course, now i just have to deal with the hassle of getting it fixed.

oh the drama...

HMPH!!!

There is an upcoming boatride in NY to which i'd planned on going.  I haven't gone anywhere for the summer and i've actually been thinking that i haven't been to NY in a long time, so what the hell - this was a perfect opportunity to kill about 6 stones at once.   Now truth be told, i've been hemming and hawing about going NY because it's such a "walking" city that i am a lil afraid of going - but a few friends i've spoken to up there say, "doh worry - we will work around that; daiz no problem"...i've still been a little hesitant.

I'll only mention 1 "name" in the following story...

so G comes home one day and says, "i got a call from person and a good point was brought up, i suppose...maybe u shouldn't go on the boatride since we aren't all going...suppose something were to happen on the boat...getting u off may be a problem..."  now, i never gave this any thought, but it is a valid point...i don't put myself in situations that i know i (or my friends) may not be able to handle, but something like this?  no....never thought that IF something were to happen on the boat....then she said, "it's ur call - whatever u decide to do is fine. I asked person why they called me and not u, but there was no real reason, anyway u'll get a call tonite"  i said to myself, "self...what are the odds of something happening on the boat; it's a valid point....hmmm" we continued talking and laughed at a few things and moved on...i continued looking for tickets.

2 days later i got a text from the person that said, "we were discussing it and we think that the boatride in ATL will be better for u to attend...call me".  i read it,  got pissed off and insulted instantly and in that moment, i decided "Fuck it, i'm not going".  i responded right away with, "it's okay - i not going".  person responded with, "what? am i not worth a call to discuss?"  At the time, i wasn't in the mood.

Now...i cyah tell a lie...my reaction surprised me - i'm not usually one to get pissed off at alot of things, but i really was pissed that day.  I think it was the "we" in the text message that did it because i was thinking "what the???!!!???" I'M the one who's sick not anyone else, so why not discuss with me - i didn't care who the "WE" was.  I also got pissed because I have MS and i can't help it nor can i do a whole lot about it so again - discuss with ME not WE 0 i felt like decisions were being made for me!!!  Well i didn't call the person until about 2 days later - after i'd cooled down, we talked about it and they tried to justify it, but quite frankly, i wasn't interested.  we have moved on from the incident and i hope that i don't ever have to  be in a situation like that again because it really wasn't a good feeling - at least not for me.

this is not to make anyone feel bad or anything like that, the person already knows how i felt and as usual i'm just telling my MS story.

+ve Attitude

I'm done with my pity party...i'm extremely grateful that i'm stable.  improvement would be nice, but stability is good news!

G and I had dinner with 2 friends a couple weeks ago.  P was running late so we were limin with H and having a good time for his birthday.  All of a sudden he said to me, "U are 1 of the srongest people i know" to which i responded, "why?".  I think i was honestly a little confused because i so try not to make the MS the center of anything.  The conversation went on and he continued that i am always smiling, never letting anything get me down and he thinks that my attitude speaks volumes...everntually i said thank you and we moved on...

an hour or so later, P showed up...good times, lots of laughter, drinks, good food and he says, "u know u are the most positive person i know".  it was out of left field (at least i thought it was) and he too commented on how i'm always smiling, organising a good time, limin hard and just generally very positive in spite of everything.

it's always interesting and "warm and fuzzy" to me when people tell me things like that.  i don't think of myself as a strong person nor do i think that i'm very positive in fact a more cynical pessimist u'll not find.   I have come to realize that i am actually dealing with the MS in the best way possible and in general i don't let it drag me down.  Back in the days when i would say "screw u MS" and do things that i shouldn't, the bad days might have reared their ugly heads more, but now that i know my limitations and don't do anything stupid, they are few and far between.

so...stability is GREAT - improvement will be greatER and i'll shout it from the rooftops, but until then I'll take stability any day!!

PT Assessment

well...my PT did an assessment of me this morning - it's been 90 days since i've started going...


i didn't test worse than i did when she did the initial evaluation (great news, i know!), but shit, is it really too much to ask to see an improvement (anywhere)????  On the scoring scale she uses, i believe i was 1 point better - in their book it must be at least 5 points for them to say, "yes, she's improved!"...so as far as she is concerned, i'm stable - good news, yeah, i know but shit!  i don't think it's too much to ask to see something positive once in a while.

Dr.'s Visit

It's been a while....i was on vacation last week - and what a great vacation it was!

anyhoo...so i went to my neuro yesterday for a regular follow up and nothing really to report.  he confirmed that the MRI shows no progression (good news), he was disappointed that i haven't seen any improvement in my gait from the Tysabri (bad news).  Also, the last time i was in to see him he said that they would draw blood to test for the the presence of the antibodies that causes the brain infection - well they never did that.  I assumed that 1 of the vials drawn during 1 of my infusions was for it.  I was wrong...so that test still needs to be done during my next infusion and i'll get the results beginning of October.

At that point, if the antibodies are present, i will be at higher risk for developing the infection and decisions will need to be made about whether to continue and tempt fate or discontinue and go on something else - decisions, decisions (as if it weren't bad enuf that i had to decide if i even wanted to start on Tysabri in the 1st place). If no antibodies present, i'm in good shape and can continue on Tysabri.

He asked me if it's working and i had to be honest and tell him that i had no clue.  I suppose it's working because i have no additional lesions on my brain or spine and no exacerbations recently, but other than that, i can't be sure.   I was hoping for a walking improvement - so many people say great things about Tysabri, "it's the most aggressive drug on the market...blah blah blah", but if you ask me, it's on the same level as all the other drugs available - oh well...wha yuh go do?

Skechers Shape Ups

 

They apparently tome yuh backside, legs, calf muscles and while doing all that also improve your posture.  My sneakers were laughing(on the sides) so they were on their way out and so i decided to a buy a pair of Skechers.

Well!  Me eh know if they will actually do all of the above - that's not why i bought them.  what i do know is that they actually have been forcing me to walk properly - heel to toe.  My feet tend to drag alot so i don't always do the heel to toe action - in fact 1 of the things that my PT wants me to concentrate on is lifting my feet and walk heel to toe - even tho it may feel like i look weird.  i think  i have the heel to toe action because the sole of the shoe is curved (and soft - it claims to sumulate walking on sand) so if i didn't walk properly i might have problems(?).  Hell if i know!   I remember that Dee mentioned Skechers Tone Ups to me once before but I'd never done anything with that info. 

Of course G and I went to the shoe store together to buy them because we both wanted to be sure that i could actually stand and walk in the damn things because of the shape.  - when she saw me walking in the store, she said, "Yuh mean after all this time, all we had to do was buy some skechers?!?!?"

Well now here i am with the Shape Ups and i believe it was money well spent.

interesting

i spoke to my doctor's nurse at the MSCA about something else today and mentioned to her that the claim was denied because the MRI was not pre-certified.  When she heard that she seemed quite distressed (i could almost hear her tsktsk-ing) but then she looked in my file and found the APPROVAL from Aetna along with a reference number!

hmmmm...

Insurance Claims

so i got a notice in the mail from Dekalb Medical which is where i went the last time i fell.  the notice stated that it had been 30 days and they hadn't heard from Aetna as yet re:payment.  The balance on the account was somewhere between $1500 and $2000 (for a CT Scan) but when i looked at the bottom line "Pay this amount" it was 0.00 so i breathed a little easier.  well that prompted a call to Aetna to find out what the problem is!

First thing i did was check my claims online and sure enough i saw that it was denied - great!  Anyhoo, so i made the call.  Come to find out that it was denied because it wasn't pre-certified (approved) by Aetna...and then the lady said if it isn't pre-certified the only time it might be paid is if the doctor diagnoses it as an emergency.  So i said, "well it was an emergency - i'd fallen and was in the ER."  i was told that since i was coherent I should have told the ER nurse/doctor to make sure and pre-certify the scan before anything was performed.  I told the woman that that was the dumbest thing i'd ever heard.  I mean who has time to think about those issues when u are in an ER and worried about whether or not you'll come out in 1 piece or what they are going to tell is going on in that body.

while she was spouting off at the mouth, i continued looking at my claims and noticed yet another 1 was denied - the last MRI.  i asked her about that one - and again she told me that it wasn't pre-certified.  Now that, i'm mad about.  The MSCA had no business doing it without it's being pre-certified - they ALWAYS do it.  Now y they wouldn't do that this year?  who knows! 

On the upside, i haven't gotten any bills from either place (YET?!?)...so I haven't gotten my panties in a bunch or putting on my armour to go to battlle with anyone - YET!!!

June 17th

oops...i missed Father's Day...hope all the fathers out there had a great day! 

Obs, i know you had a great day!

Driving

it took my PT to point this out for it to dawn on me...1 of the reasons that driving is not a problem is that i don't drive with my left foot - that damn weaker 1.  Good thing that G cyah drive stick because that's the ONLY reason that i own an automatic car.

to test the theory, while i was driving home after i left her office, i tried to move my left foot as if i were using it to drive and it really wasn't as responsive/that easy to do.  I'm sure it's not the only reason because even when both legs/feet want to act up, i can get behind the wheel and be okay but it definitely is a big factor - can't believe that it never occurred to me - DUH!

Reminders

I have a small bump that hurts (feels sore) only when i press it.  It's at the end of my left eyebrow - a constant reminder of my last fall (as if i'll ever forget)!  it's very small; doesn't bother me at all, but it's there. 

the other thing that i've noticed is that the skin under my eye is darker than usual, but only on some days.  It's so weird...2 weekends ago, i washed my face and looked at myself and was actually kind of alarmed.  When G saw me a few minutes after that i saw her watchin me hard and when i said, "what?"...she said, "ur eye".  we both noticed on that day that it was darker than normal and since then i noticed it again this morning! 

No rhyme or reason...go figure!!

i Knew It!

Steups...they only did a cervical (my neck) MRI - they didn't do my spine...GRRRRR!!!!i knew it was just too good to be true.  STEUPS!!!!!  i don't know how they are going to handle the fact that it wasn't done yet.  and it was actually the one i was looking forward to the most, since i know that i have scarring on my spine and was really curious to see what might be going on there since last year.

Anyhoo, so the neck one was good...it shows no sign of disease progression - that is great news! 

so... that means, the brain is clear, the neck is clear and uncharacerstically of me, i'm thinking that the spine is clear too.

Motorized Carts

I think i've mentioned sometime before that now when i go to the grocery i use a motorized cart to get around.  I cyah bother fight with walking around with a cart  and so i finally came to the realization that there's nothing wrong with using the carts - that's what they're there for.  Those things are not as easy to manouver (sometimes they go much fast than u really want - esp when turning) as you'd think.  I've gotten used to them (for the most part) now but it was a little touch and go at first. 

Usually if u just let go of the controls, the thing would stop.  I remember 1 time that wasn't happening...so i would let go of the controls and the cart would still keep going for just a few seconds before coming to a complete stop.  Well by the time i was done and had to leave, i wasn't thinking about that and as i tried to look left and right for cars as i rolled out of Kroger (down the slight incline) i zoomed right into the street.  Luckily i was able to steer it to the side so that i didn't have an accident with the car that was coming.

A few months ago, i was going to get some bananas.  There was a man standing right at the banana stand, picking his bananas.  I approached and realized that i could not make it into the tight space that was left (there were 2 other people there), so i patiently waited behind him for 1 of them to move before i went in.  well between me and my motorized cart and all the other carts/people, i had to reverse to let someone out.  Don't u know i used the forward control instead of the reverse and ended up jamming said man up against the banana stand.  Naturally i was mortified and of course, i was a little flustered so it took me a few seconds longer than it should have to throw it into reverse (as i should have in the 1st place).  If i'm not mistaken, i saw the woman who was with him, chuckling to herself (and trying hard to hide it) at the sight of him jammed up against the bananas - i also had to keep myself from laughing out loud after the mortification passed.

yet another example of a funny situation that i find myself in sometimes as a result of this disease - LOL!!

Cursing the MS Gods

I spent all day cursing the MS gods.  I have PT every Tuesday morning and the last thing my therapist does before i walk out of her office is stretch me out - it's my favorite part of every session.  Well this morning was no different, except she did a new stretch - ok, no biggie.  while i was walking out, i felt a little out of sorts, but i just chalked it up to the new stretch and paid it no mind.  i get home and 3-4 hrs later i find that i am still feeling and walking really badly.  I'm thinking, "ok, must tell Allison that she can do that stretch no more because i can't have it messing up my entire day like this again." 

little background here...my alarm starts going off at 6:45 when i have to go to work (i say start because boy do i snooze), then it goes off again at 8 for medication.  Well on Tuesdays, i have to wake up earlier because my appts are at 7:30.  So i have a separate 1 set to wake me up on Tuesday mornings and the 1 at 8 doesn't even go off because that'll be in the middle of our session, so i take the meds just before i leave the house.   

As usual, at 4:00 i get the reminder (no alarm during the week, i just have an Outlook reminder) to take the afeternoon pills and wouldn't u know it  - the am pills were still in that section.  Funny thing is, i have a vague recollection of taking them, but who knows maybe that memory was from yesterday - altho i could swear that it was this morning.  This has happened before so i am confident that it had nothing to do with the new stretch or the MS per se, it was just the fact that i didn't take the pills!

So now, the MS gods are looking down and cursing ME for once again blaming them/it when they did absolutely nothing out of the ordinary.

MRI Time Again

So i had a 2fer last week Friday...had to go in for infusion #14 (time waits on no-one; can't believe it's been so long already) and did my neck & spine MRI on the same day.  The MRI was scheduled first, but they sent me in the infusion room for the nurses to set up my IV "so that i wouldn't have to be stuck twice" - LOL!!!  (when they do the MRI, they inject me with a dye so that the lesions/scarring would show up more clearly so the thought is that they would use the same IV site that the nurses set up for the infusion.)  As  they say  down here in the south, "Bless their hearts"...they really mean well, but on the day that I'm only stuck twice I'm extatic! As it turns out, i was stuck twice to set up the IV - such good times.

Anyhoo, so i was about to go into the tunnel for the MRI and i asked the radiologist if i should settle in for about an hour and she said, "no...it'll only take about 15 mins".  15 mins????!!!!   She couldn't be serious.  For real????  I'd adjusted my medication time so that i would fall asleep right about the time i was in there...i was skeptical and even wondered if she knew which areas i needed to have done but i didn't say anything (i should have - if they didn't get all areas i don't think that Aetna will pay for another), i mean i was scheduled for a neck and spine MRI so she must know what she was doing.  I couldn't believe it - about 15-20 mins later i was out!  i think that it was the best MRI i'd ever had done - even though i think that i dint insert the ear plugs properly because it was extremely loud in there (louder than normal, but then again, this wasn't a normal MRI experience)!

No results yet; i thought that i would have been able toget them soon after, but i couldn't.  I called this morning and left a message so hopefully someone will call me back soon with the results - fingers/toes/legs/eyes all crossed that there's been no progression.

Cane Holder

a very simple looking thing that, when i got it in the mail, i thought - this is some bullshit; how the heck is this supposed to work??? in fact, if OB wasn't here at the time i probably would have sent it right back to Amazon and asked for my money back!

well wasn't i in for a surprise...the thing actually works so damn well it's not funny.  it essentially holds the cane upright when it's placed against any straight edge (table, countertop, anything like that); it's not as savvy if the edges are rounded but it stilll is better than trying to lean it up somewhere. 

well...a few fridays ago we went out...hit 2 places that nite and had a whale of a time.  I woke up Saturday morning to go do whatever the hell i had planned and went to prop up the cane and noticed that the holder was gone!  what the?!?!  when did that happen???  Don't u know that i was feeling like a fish out of water for the entire time that i didn't have my cane holder.  I couldn't believe just how attached i'd become to the damn thing - i guess me and the cane are becoming 1 after all...

a couple days later, i promptly went back to Amazon and ordered not just 1 but a pack of 3 - jes in case!  A gal needs to be prepared at all times.