Tag: Tysabri

A very LONG walk

~ msgracefulnot ~ 27 Comments

I don’t know if I have ever talked about it before, but I used to be STUCK in a wheelchair.  It was 2009, before I started Tysabri Infusions.   I won’t give all the credit the that I am again walking to Tysabri, but it has been very effective at slowing down the frequency of my MS flares and relapses.  There was also a stay in a rehab facility and a solid year of physical therapy 3 x a week once I was discharged.  I have also been on Ampyra for, hmm I don’t know how many years as well.  (If you have never heard of it, Ampyra is known as the “walking drug” for MS.)

A few years ago, I had worked up to being able to walk for a full mile at a time without having to stop or take a break.  That’s NOT to say I wasn’t ‘down’ for the rest of the day, or that there were not a few falls ( and bone breaks ) involved, but I went from wheelchair to walking, and I was so proud of myself!!!!  I had even begun taking my dogs for my morning walk, until that ONE DAY!

When I woke up that morning, I didn’t really feel like walking, but if therapy taught me anything it was IF YOU DON’T USE IT, you LOSE it.  So I dragged my ass out of bed, brushed my teeth, coffeed, leashed the dogs, and headed out the door.

dogsWhen my dogs went through obedience and therapy dog training, they were each ‘assigned’ different sides, D. O. G walks on the left, and SNUFF walks on the Right.   (in the picture  they are reversed) I wrapped each of their leashes around my hands tightly, and would soon find out that I had made a HORRIFIC mistake in doing so.

Both dogs could sense that I wasn’t feeling well and weren’t behaving as well as they normally did.  (They were competing for my attention and walking under my feet.)  I was very grateful to be rounding the last corner of the block  (I was less than 200 feet from my front door)

The “Scene of the Crime”

sceneThis building was a barber shop, and the barber had come out to empty his trash.  When he saw me he waved and called “hello” as he did 100 times before.  For some reason, both dogs pulled in different directions and down I went…… literally something like this….

faceplant

I landed directly on my chin and was pulled/dragged toward the un-offending man while he ran back in the store.  (In his defense, he did TRY to come back out to help me up, but the dog’s seemed to have lost their minds when I fell and would not let him anywhere near me)

Somehow I got the dog’s under control and was finally able to stand up and limp home.  I made it in my front door, called out to thing 2 and immediately collapsed again.

(to be continued)

I don’t think I made it clear when I posted this, this was a couple years ago.  Sorry if I mislead anyone

 

 

 

 

NOT THE TUBE!!!!

~ msgracefulnot ~ 35 Comments

By the time this post appears, I am probably already stuffed in the tube for my annual MRI.  Nothing new really, I’ve only had 40 or more, I should be a professional by now.  But Today is a First for me.  I am going to attempt to go in without being drugged.  Lately, I have been pushing myself to do things outside my comfort zone, you know like dealing with FEELINGS and shit….. :(,  So I figured why the hell not….?

Tonight (well now last night) Thing two looked at the dry erase board with all of our schedules on it.  She saw that I was scheduled for an MRI at 10 AM Friday, and asked who was taking me.  Like a proud 4 year old that learned to tie their shoes, I replied, “I’m going by myself.”….. The NEIGHBORS could hear her laughing……smh heh Thanks for the support kid!

I guess I should start at the beginning and maybe share some of my MRI tragedies with you.  The very first time I went in for an MRI was 20 years ago, when I was diagnosed with Multiple Sclerosis.  I had never even heard of such a thing.  The doctor explained,  “it’s just a glorified xray machine, but it will take much better pictures”.  If she was still in practice I would find her and let her know exactly how I feel about her bullshit explanation by placing my foot in her ass.   SMH….

So about 20 years ago, My sister in law and I show up at the hospital for my first MRI of my brain. I thought they were looking for a pinched nerve or something simple to explain the numbness in the left side of my body.

c spine coilI was 25 and had no idea that I was claustrophobic.  I laid down on the table and they put something that is called a coil around my head.

Coil my ass!  This thing felt like a vice and I couldn’t breathe!

While they were trying to calm me down, the doctor called down to say that she wanted a cervical spine and thoracic MRI as well with GAD otherwise known as Gadolinium for contrast.  This meant another coil and two more hours to the one I was already committed for.  The second coil looks like this.

head neck

Oh fuck no!  Although the coil is very lightweight, it felt like 100 lbs on my chest.  I started panicking  and hyperventilating before they even put me in the tube!!!!

Hey guess what…. I’m claustrophobic as fuck!!!!!!

They called the doctor back and told her I was being ‘uncooperative’, could they give me something to relax me?  After all these years, I still can’t believe I was the first person to ever freak out about being put in a tube, in fact I am positive that I wasn’t.  Seriously though, no warning!!!!

I don’t know what they gave me to sedate me, but I kind of remember climbing back onto the table, being “strapped down”, given a little “panic bulb” and being  pushed inside the machine.  I must have fallen asleep.  When I woke up, still inside the machine, I tried to squeeze the little panic bulb, but I had dropped in in my sleep.

I started yelling, and kicking the machine from the inside.  No one was coming!!!!!  My sister in law could here me yelling in the waiting room and came busting through the door yelling, “can’t you hear her in there, get her out!!!!”…. That is the LAST time I ever let anyone put me in an MRI machine without being drugged to some degree.

In fact this is the perfect time to share another MRI mishap.  It was 5 years and several MRI’s after that first bad experience.  This time I was going to be smart though…or so I thought…. I had scheduled the MRI for 6 am on Black Friday.  My thoughts were, that I would stay up the entire night before shopping and I would be so exhausted that I wouldn’t need as many drugs to go in the tube.  Sounds like a good plan right?

We went to Thanksgiving at my parents, did black Friday shopping, but I couldn’t stay awake.  The last time I looked at the clock it was 2 am Friday morning.  The next time I looked at the clock it was 11:30 am.  I started yelling at my husband, why didn’t you wake me?  I had to be at the hospital by 6 am!!!!  When I stopped yelling, he said, “Grace, you were at the hospital and you had your MRI, Honey it’s 11:30 on Saturday!”

NO fricking way!!!!!

My stomach was growling so loudly, so I went in the fridge to find something to eat.

veggie tray I found something like this with a section filled with turkey, another with sweet potatoes, and so on and so on.

When I finished stuffing my face, I told Ken that he his idea of filling the veggie tray with leftovers was brilliant.

He responded, “I didn’t do it, you did.”  “after we went for your mri, we stopped by your parents, you ate almost a full plate of deviled eggs, and filled this up with leftovers”

I have absolutely no recollection of anything after 2 am Friday morning.  Apparently, everything he said was true though.  Looking back, I Think I self medicated TOO much.  That’s the only explanation for it.

I really scared the shit out of myself with that one!

Since that time, I have learned better and SAFER coping mechanisms for being placed in the tube, but it has taken me years to work up to this.

  1.  I know how to disconnect the coil myself.
  2.  I only schedule one mri at a time.
  3. I do keep my eyes closed the entire time.
  4. I keep the music on very loudly in the headphones
  5. I “tie” the panic bulb around my hand
  6. I make the technician talk to me between each picture and tell me how long the next image will take.  (so I can break it down into 5 minute segments)
  7. and perhaps most importantly, I go to the same place with the same technicians each time, so I have developed a bit of trust for them.
  8. I know that if I can’t make it, I always have the option of LIMITED drugs

I hope to write tomorrow (later today) that it was a piece of cake.  I have to try!  MS is not going away, nor are the yearly MRI requirements to stay on Tysabri, so I might as well give it a shot.  If you are interested in learning more about my experiences, with Tysabri, please type tysabri in the search box, I think I have made several posts.

How do you deal with repeated MRI’s?  Any tips?

 

We must have a bad connection

~ msgracefulnot ~ 17 Comments

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”.  I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out.  For some reason though, my ears do not pass the message on to my brain.  (or something like that)  Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

  • your pain is manageable today, you better get that done while you can
  • you don’t know WHEN you are going to feel this way again, so do it NOW!!!
  • fucking MS  smh
  • but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

  • It’s ONLY laundry, how hard could this be?
  • I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
  • or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

  • but there is so much to do
  • never enough time
  • but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality.  I HAVE to make the MOST of each day!  I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden!  Some days though, I’m just bored or “stuck in a rut”  I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

time to beat

So for those of you that also struggle with this “disconnect”, how do you manage this?  How do you “slow down” and not overdo it?  How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time.  Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend.  My eye is on the prize so to speak.  I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am.  Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards.  That’s it!  That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house.  Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it.  While I have pulled wires, and connected outlets for years, I do still need help.  My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time.  Unfortunately, this will involve some more climbing in my attic.  Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding.  I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time.  If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week.  I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is.  I have prioritized.  I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize”  Wish me luck?

 

 

 

MS Cog Fog, Slump Week, and Grieving

2 coffee makers
~ msgracefulnot ~ 13 Comments

Have you ever had a night out drinking and then next morning “replayed” the events from the previous evening in your head? You try to fit the pieces and events together but you know you are missing parts…Everything is a little blurry…. I am doing that now, but not because I was drinking…. I wasn’t.  No xanax, or other mind numbing medications.  But the “blur” is there.

I don’t know which one is to blame, or if its a combination of all three, but I can tell you it was rough, and maybe a little dangerous.  That was yesterday, I’m hoping that I am better prepared for it today.  I have identified the problem, now I want to ‘laugh’ at it and try to prepare for today a little better. (plan for the worst, hope for the best?)

My new coffee makers ( yes two of them) arrived yesterday, and as I sit here drinking my 3rd espresso, I would like to review yesterdays events.  YAH COFFEE!!!! but more about that later.

I remember being woken up at 5 am to take Einstein to work.  I know that I walked on the treadmill at some point.  I remember thinking no workout today because my arms and abs still hurt from the abuse I had given them the day before.  (I think I only ‘remember’ that because they still hurt today….doh!)  I also know that I was on wordpress and facebook a bit, because the notifications and time stamps tell me that I was.  (I honestly don’t remember though)  Did I mention I wasn’t drinking?!?!?
I went to Aldi’s yesterday to buy eggs.  Only eggs.  This I do remember because I had a long discussion with myself that I didn’t need to use a cart for balance, I was only getting one thing and I COULD do this!… I make it to the back of the store, grabbed two dozen eggs, cradled them in my arm like a baby, and made my way to the checkout where I just stood.  I never put the eggs on the belt.  I stood there having the meaningless conversation with the cashier, “Hi, how are you?” etc.  The problem is I stood there for 5 mins, just holding the eggs.  “Oh Shit, I should probably give these to you huh?” I asked.  He smiled and said, “Nope I got you, $2.12.”  I remember that too.  I remember the price of the eggs, but I don’t remember driving home, putting them away etc.

At One O’clock this heavy cloud/weight settled on me.  I felt like I was going to pass out.  Not because I couldn’t breathe panic attack style.  I just couldn’t….. anything.  Well that sucks… I needed to pick Einstein up from work in a couple hours.  MORE COFFEE!!!! Fold the laundry? Somehow you must stay vertical!!!!  Yeah that didn’t happen.  I passed out, sitting up folding laundry.  I woke up 2 hours later to the sound of the 4th call from Einstein….”Did you forget me?!?!?”

OMG!!!!  YES I did!, I mean NO!…oh shit…. Sorry, I fell asleep…… I’m coming!!! I went to the bathroom, tripped over the coffee table, put my shoes on and ran out the door.  ARGH… I don’t take naps, I am NEVER late, in fact, if I am not 15 minutes early people begin to worry……smh

While I didn’t HURT myself or anyone else yesterday, I wasn’t there.  (Although, I did almost hit Einstein with my car for the 3rd time in his life.)  Yes I did just say that I hit him with my car 2 times, once WAS intentional the other I claim is his fault.  ( If you remind me, I will tell you about it in a couple weeks, it’s not a horror story, and it’s something we all laugh about, NOW)

So TODAY, I am prepared for the worst.  Einstein took my car to work, so I don’t have to leave the house until visitation tonight.  My only plan is enjoy my new coffee maker, and just be.  I am giving myself the gift of no expectations until this evening.  When all I have to do is show up.  My girls are going to the funeral home with me.  My parents are meeting us for dinner afterwards, and then I am coming home.  No lists today!

Tomorrow, or next week, or even a week after that ( Yah Tysabri on the First) I will make another to do list, but for now, for today…. I will just be…..

While I am here though, I want to thank everyone for letting me share my pain and memory with you the other day.  Thank you for your presence, support, and kind words!!!!

 

 

 

Oh NO, ANOTHER POST about Tysabri

~ msgracefulnot ~ 15 Comments

Actually, it’s not really about Tysabri, but I do want to talk about it for a minute.  ( Which we all know will be 700 words about Tysabri)….Well maybe not, I’m still “precoffee”.  Anyway, I digress…Yesterday and this morning I received numerous texts and messages wishing me well and seeing if I was ok because it was Tysabri infusion day, and to be honest the drug does “kick my ass” FOR A DAY.  Only for a day.  Before I started it, MS was kicking my ass EVERY DAY!  Ok, I was letting MS kick my ass everyday, either way it is only for ONE DAY.

I slept all day yesterday.  (Well my brain did.)  There is evidence that my body attempted to function because their is a full ashtray by the couch where my cross- stitch sits.  (Somehow more of that is completed too?!!?)  My dogs, aren’t completely up my ass so I must have fed them too… Einstein ate (Evidence of an empty bag of CHEEZITS is on the floor next to his desk)….smh

My tummy isn’t rumbling, so I must have handled that too.  THAT is actually the reason I am writing this morning.  There are so many worse things in the world.  I am not hungry, I have a roof over my head, my kids are healthy, and I am fortunate enough to still have both of my parents in my life.  The point is THINGS COULD BE ALOT WORSE.  Losing ONE DAY a month to treating MS is so much better than the every other night shot, followed by a day of fever, chills, and vomiting.  I’ve GOT this!  (and apparently a day of catch up)….lol

no coffeeI have been waiting for coffee the entire time I rambled this only to find that the coffee machine (ok ok Espresso machine) is broken.  OMG IT WONT TURN ON!!!! No pretty blue lights (YES IT IS PLUGGED IN)  The button won’t even push…..GRRRRRRR… OMG, Now I do need help!!!!!!  DOES ANYONE DELIVER?!??!back up coffee

HEH!  Anyone that knows me in real life KNOWS I have a back up plan, and a back up coffee maker, and a backup pack of cigarettes…and and and…. But Seriously, My Espresso machine is broken and I do have to play “catch up” from yesterday while attempting to function on 1/4 of my daily caffeine intake. 😦

I hope everyone has a fantastic day today and a great weekend 🙂

If you happen to have any free time, please send or deliver coffee.  OR… stop by My coffee pinterest board and add your favorite pin or post it on my Facebook page?  Have a Great weekend everyone! 🙂  See you next week!

Photo credit: http://www.capejava.com/