DEFINING your life as BS (before stroke) or AS (after stroke)!

Do you, or someone else DEFINE every stage of your life now as BS (Before Stroke – fits perfectly, huh?) or AS (After stroke)?  Example:  “Oh, BS we use to hike and do all types of outdoor stuff!”  Or, “AS she doesn’t like that anymore!”?

I am finding that as time goes by, these “Defining Moments” happen less and less, or maybe I’m ignoring the outside comments?  I try hard not to define my life by BS/AS, but it can be hard.  Especially when it comes to not being able (yet) to things you used to do well with family and friends.

One thing struck me the other day:  We had a 2 year anniversary sale at the the White Dove Thrift Shoppe where I work.  I realized later that day, that not once did I think about it in terms of my stroke.  I used to.  I would always associate the store with my stroke in terms of progress.

Now, the store is an entire separate entity.  I find my stroke is not an issue anymore (most of the time).  In fact, the other day, one of my co-workers was telling a new volunteer about my stroke.  I found it felt odd.  Like they were talking about someone else.

That night I realized that as I progress, my world of BS & AS are widening.  I can talk about my stroke.  I can laugh when I have “one of those days or moments”.  But I am not defining every moment, every activity with BS or AS!

Feeling Great On New Medicine For My Spasticity!

I’ve been on Baclofen for three years now since my stroke, for my night-time spasticity with very little success.  Yes, it helped…..mildly.  But even at the highest tablet dose, I was still waking up 4-5 times a night with my right leg & arm in spasms!

I didn’t want to add another, stronger medicine, to the others I’m already taking.

So, on my last visit, after telling my doctor again that the Baclofen wasn’t really working, and I was exhausted from not getting enough sleep, we decided to try another medicine:  REQUIP.  This is a med used for muscle spasms, mostly with Parkinson’s patients.

I was ready to try anything.  So for the last 2 weeks, I’ve been lowering my dose of Baclofen, while slowly introducing the Requip.

The last three nights, I’ve  taken 1 Baclofen (vs 4) and 3 Reqiuip.  And I am so excited to report it’s working great!!!!

The last three days, as the Requip was slowly upped and the Baclofen was taken down to 1, I’ve felt more alert, more “my old self”, with more energy and ready to “get moving”.  Best of all?  I am sleeping thru the night with no painful spasms during the night!

The folks I work with have even commented on the difference in my alertness, energy, and mood.

I’m keeping my fingers crossed that my body doesn’t throw a whammy in there and get used to the med and start spasming again, but for now, I’m HAPPY!

As always, it’s up to the patient to SPEAK UP, SPEAK OUT, and MAKE THE DOCTOR listen!  If your meds, your therapy, your treatment, aren’t working, don’t just “go along”, assuming there’s nothing else.

Today, for now, I’m almost pain-free, sleeping great, and raring to go during the day, all because I didn’t give up and I spoke up!

It’s not ALL thorns. Roses DO APPEAR!

After yesterday’s “spasticity” battle, I realized that I forgot to share some exciting news:  I GOT A JOB!

If you’ve read one of my older posts, Volunteering helps me concentrate on helping others!, you’ll know that I have been volunteering at a thrift store run by a great non-profit here in Arizona called Hospice of the Valley.

Volunteering gave me the “boost” I needed to step out of my self-imposed cage.  Without the pressure of having a paying position, I was able to “test the waters” back out in the world.

The store opened in May of 2013, 14 months after my stroke.  At that time, I still had a lot of trouble concentrating, holding conversations, and understanding instructions.  Working more than 4 hours a day was exhausting.  But I steadily improved. And I LOVED working again.

Today, I am ECSTATIC to announce:  I HAVE BEEN HIRED as a permanent cashier for the store!   I will be working 25 hours a week.  And I will be once again: BRINGING HOME A PAYCHECK!  singlewoohoo

Volunteering enabled me to slowly integrate myself back into the business world without the fear of being fired or let go because of my disabilities.

I start my employment (vs volunteer) hours next week!  I am excited to be an actual employee again, bringing home a check to help with the bills.  It will feel great to know that in this small way, my husband will be able to relax a little knowing he’s not the sole provider.

If you take anything away from reading this post (other than my obvious joy), please let it be this:  If you are not ready to get back into the working world, please consider volunteering.  I had never volunteered before, and I tell people that volunteering, for me, was just as important, or maybe more so, than my weekly visits to my speech therapist, my PT and my OT.

I was able to get out there without the fear that if I was having a bad day and couldn’t go in, I wouldn’t be fired or let anyone down.  They understood and there was no pressure.  On days when I “wasn’t up to par”, but still went in, they gave me jobs that met my abilities for the day.  There was always “something” I could do.

I have a new job because I stepped outside my comfort zone and gave it a try!

Not Just For Kids (Gadgets geared for kids that work for disabled)!

I got my Christmas present early this year, on Black Friday, a new tablet with a 10″ screen!  For some, this seems like a small TV.  But, for me, with my bad eyesight, it’s a way for me to enjoy technology.

But, I was extremely leery about using it because the tablet itself is very thin & slippery.  My grip is not the greatest, and I was constantly worried about dropping it.

So I went on the hunt for a case.  It had to be durable.  It had to be a bright color, so I could find it (our tables are black) easily.  And, it had to have a material that gave me “grip”.

I just happened to find a case geared for kids called the Samsung Galaxy Kids Shockproof case on Ebay!  I was a little apprehensive that the purple color I ordered might be “too bright”, but I ordered it anyway.  I figured I could always return it.

My case arrived about an hour ago.  I ABSOLUTELY LOVE IT!  The purple is not too bright, but bright enough to see it laying on the table.  The built-in handle/stand is easy to grip.  The overall material of the case is a heavy-duty foam with double foam at the corners.  Foam doesn’t really describe it, but believe me, its thick, it’s grippy, and it works. I can now carry my tablet using the handle. Plus, when I’m sitting, the case sides & back are thick enough to give me a great grip while play games, sending email, checking out FB etc.

Sorry if this sounds like a commercial.  But it’s so rare to order something online and have it actually turn out better than you’d hoped.

I sent the seller a note telling them they might want to consider adding something in the description and/or title saying this would work well for the disabled/arthritic adults, not just for kids.


Re-Learning the Art of Driving & Paying Attention!

Last post I let you all know I had passed my driver’s test.  We had taken my car down to VMI in Phoenix, to have the hand controls installed.  I had to wait a week for them to order the part for my car (my car is older 1999 and they usually have controls in stock for newer vehicles).

Last Friday morning  I went to VMI at 8:30.  I was “measured” to make sure the controls were in the correct position for me.  At 9:00, Jason, my instructor from Driving to Independence, showed up for the final “test”, driving my own vehicle.

All went well, and at 10:30 I found myself behind the wheel of my own vehicle!  It was, IS, a great feeling after having NOT driven for 2 1/2 years.

But I will tell you all this:  Driving again after taking such a long “break”, gives me the feeling of being 16 again!  I am ultra aware of EVERYTHING around me.  I come to a COMPLETE stop (you all know what I mean, lol) and even take that extra couple seconds before going ahead.  I’m finding I’m aware of peoples “mistakes” on the road and their carelessness.  I’m much more attuned to things now than just before my stroke.  Things that I had taken for granted or gotten lax doing (can you say “rolling stop”?).

And I will say this:  I WON’T be driving for any long periods of time for a while, if ever.  Having to maintain my concentration is exhausting!!!



Goodbye’s & Hello’s After a Stroke

After you have a stroke, you find yourself saying “Goodbye”…… A LOT.  Goodbye to feeling independent.  Goodbye to feeling comfortable alone.  Goodbye to family & friends just “being” with you, instead of asking “Are you alright?” every time you have an ache or pain.  Goodbye to feeling in control of your life!  I deal with all of this, and a few thousand more “Goodbye’s”.

For the stroke survivor, the “Goodbye’s” can tear your heart out!  Losing a job. Friends distancing themselves from you. Hobbies that can’t be done anymore. Dreams that you now know you will never accomplish.  So many Goodbye’s!

But, after a stroke, you do slowly start to have some “Hello’s”.  They don’t seem to come as fast or as often as you want, but they do come.  The problem is that sometimes you are saying “Hello!” to a slightly different “friend”.

Your “Hello’s” now may need to include assistive devices, such as a cane, and AFO, walker, wheelchair, etc…

But we need to realize that it is a “Hello”!  And that means one less “Goodbye”.

Four years before my stroke, I almost lost my eyesight.  Doctor’s have no idea (big surprise) what caused the lenses in both my eyes to suddenly detach 2 years apart.  I spent 3.5 years & countless amounts of money & time traveling to/from AZ to CA for 3 separate surgeries, all the while not knowing if my vision would ever allow me to read, see my kids & husband, or drive, again.

The surgeries were a success.  It left me saying “Goodbye” to my lighter than air glasses, and “Hello” to what I laughingly call my “Mr. Magoo” glasses.  But I can see my kids & husband,  I can read, and I could drive!

Fast forward to March 2012.  That was the day of “1000 Goodbyes!”  And once again, I found myself saying “Goodbye” to driving.

Well, starting Oct 9th, I am hoping to start the wheels turning (I know, “Groan!) to me being able to say “Hello” to driving again.

I am going to talk to the doctor about signing me up for the assistive driving evaluation.  This will allow me to move forward to having a vehicle fitted for hand controls so I can drive again!

After a stroke, there are MANY “Goodbye’s”, but we have to remember to celebrate the occasional “Hello’s”!


Chemical Changes Since Stroke That Attract Buggies?

It always seemed to me that if there was one mosquito, and I was in a room of 40 people, that little sucker (pun intended) would find me.

But since my stroke?  GEEZ!  I can walk out to the patio, feed the cat, and come inside, only to discover that I was a walking buffet for all the thirsty buggies outside. I’m not kidding here.  It just happened!  Time outside?  Less than one minute.  Number of bites: 3!  And the thing that drives me nuts about it all?  You can’t see that damn things.

We don’t have fleas here.  And I know fleas!  We lived in Southern Cal and oh, I hated those things.  My cousin says they are “no-see-ums!”  All I know, is that they suck!

No one else in my family has this problem. My husband goes out on the patio and reads for two hours……TWO HOURS, and comes inside without even one bite!

I am wondering if my chemical balance has changed since my stroke, making my blood more inviting to these horrid little beasties?

All I know is that I am laying in a lifetime supply of Benedryl!