Category: Random Thoughts

Needing Assistance

I’ve mentioned sometime before that i will accept assistance even when i don’t need it sometimes.  I figure if someone offers to help me, i’ll take it.  There are times however, when i actually could do with a hand and will ask for it – ain’t no shame in my game (anymore) at those times.  It’s those times when that left leg gets so stiff that i just can’t bend it  (it’s amazing, but it happens) or if i feel really weak and just can’t move it on my own.  Oftentimes it will happen when i’m getting into or out of a car.  Getting in, I would plant my ass on the seat and then cannot swing my legs in – the other day, i discovered a way to “tuck and roll” into the car in those times – not very ladylike and only to be used when absolutely necessary.

So 1 day, we were going somewhere and K was driving.  She drives an Explorer – that thank goodness, unlike big black (J’s Tundra) has a step ladder so getting in is a breeze.  Well that day, no matter how hard i tried i couldn’t get in the car.  i could step up on the ladder, but not get in – try as i might, it jes wasn’t working- it was a while ago, i really don’t remember what was happening.  I asked her for help so she did but it made no difference, i still couldn’t get in.  A few seconds later, G come downstairs and seeing what was going on said, “K!  what u are doing is not going to do anything.  U have to take that leg and manhandle it, use some elbow grease and strength and force it to do what you need it to do.”  In 2 2s we were on our way…last week, a friend was visiting and again, i needed some help – same thing essentially happened.

G is used to me and my “issues”.  Others are aware of my situation but are not always involved with the kind of help i might need.  It’s always funny to us when we have to school people on the way to (man)handle me if necessary.  The good news is that i have no pain so using force is not going to break or hurt me and i don’t get embarrassed by what needs to be done, so we just get it done and be on our way.

No time to waste round here!

#17!

whoa!  time waits on NOONE!

I went for my 17th infusion on Friday – who woulda thunk it; I can’t believe it’s been that long.  It was a great one too – i got stuck only once, the blood GUSHED out of my vein (unlike the usual “molasses going UPhill”) and the medication took only 20 mins as opposed to an hour to flow into my body – go figure; i chalked it up as “just 1 of dem tings“.  I stayed a little longer than normal to be observed afterward because 20 mins was so out of the ordinary.

Anyhoo, so i normally see a doctor or a nurse practioner before going in for the infusion and 1 of the questions they always ask is how things have been in the past month and if i’ve noticed any new neurological symptoms (I CANNOT spell that word on the 1st try – EVER). so i told Beverly (the nurse practitioner) about my off and on bladder issues.  She asked me if it was new to me and i told her that it has happened before, but i never thought that it was MS related.  She confirmed for sure that it was and told me that if i was interested, there were drugs that could be prescribed to help.  Before i could say anything, she went on to tell me that the drugs prescribed sometimes can make it harder to pee for some patients.

now, i didn’t want the drugs in the 1st place but after she told me that, there was no way i was going to say yes.  What the?!?!?! can anyone tell me why it is that the drugs prescribed that will help one to pee all the way and completely empty the bladder will actually make it harder to pee at all?????  There is something wrong with that statement – it makes no kinda sense – AT ALL; not in any language!!!!  Who the hell are these researchers, drug manufacturers, scientists…boy would i like to have word with them!

Anyway, I asked beverly if my going along without doing anything is a problem and she said no – thank God.  As with everything MS related, I will keep an eye on it and if it starts getting worse or becoming a problem, i will deal with it then…no need getting my panties all in a bunch for nothing at this point.

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!!!

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