One year ago today, I had my second stroke.

OK, well, I don't know that the first was a big deal, since I didn't even know I'd had it until I had the second.  It's certainly arguable that the second stroke was the one that changed my life in a million small ways, so it's the one I'm counting.

Plus, I have no idea when I had the first, so there's no telling what anniversary I'd have to count it as.

Anyway, today was kinda hard from a mental standpoint.  Not so much physically--I basically did nothing but metabolize, so it wasn't so rough.  But, yesterday was rough because it was one year from my very last "normal" day...the last day I really felt like me.  And today is even more rough, because even though I didn't know it was a stroke I was having, it was.

But, everyone keeps telling me to cheer up and look at all that I've done...blah, blah, blah.  Apparently people can't let me have sad for one day.  Apparently that is a difficult concept.  I know everyone means well, but geez.  Sad is just a thing I'm going to do today and maybe tomorrow.  And yesterday.  Hell, I don't know how long, but losing myself, as I knew me, is something I'm just going to mourn and be a little bluesy about, and everyone can just kinda get over it.  Or don't watch.  Whatever.  Just don't expect me to make you feel better about it.

They do kind of have a point.  It's been a big year.  Let's just look at some of the things I've accomplished.

1) I relearned how to eat.  The stroke knocked out the left side of my tongue, and I didn't know how much you rely on your tongue to clear your cheeks of food that you've chewed and now need to digest.  Watching me eat was not a pretty thing immediately after my discharge.  Not pretty at all.

2) I learned how to cook, do laundry and achieve daily tasks with a walker.  That's a little more difficult than  you'd think.  Unless your kitchen is specifically designed to be evenly accessible, navigating from fridge to counter to stove is tricky when you have to bring a walker with you.  I am glad I was able to ditch it by October!

3) I learned that I CAN rock short hair.  The whole fat girls looking like pinheads with short hair is bullshit.  See?!

3) I relearned how to walk.  This was a huge thing, something I thought might be an insurmountable obstacle many times.  There were days when I thought I'd never lose the walker.  When I moved from the walker to a cane, I thought that would be as far as I got.  I still have a limp.  Standing up and getting out of the car are still things I have a hard time with--I probably always will.  But, I can walk.  I can jog (OK, but it's not like I'm doing that.  Let's be realistic.), and I can even wear heels some days.  All in all, this is the accomplishment I'm most proud of.

4) I got used to my now crooked smile.  If possible, I look even more like my brother now!

5) I learned SQL.  I still hate nested queries.  Nonethless, I learned it.  I got a B.  Not too shabby for starting a rough semester in the middle of inpatient rehab.

6) I graduated.  Wait.  I graduated WITH HONORS.  My degree says "with distinction".  I earned my Masters degree.  I got all dressed up in a cap, gown and hood, and I walked across that stage and got my degree folder.  Hey, I even wore heels!  I needed a hand up the steps and down on the other side, but I'm not so bad at asking for help anymore, which brings me to:

7) I learned that it's OK to ask for help when you need it.  I was so used to being the one who toughed it out no matter the difficulties, who was strong and never needed help that this was a hard one for me.  I always assumed people would think I was weak if I needed help, that I'd loose my status as the strong, competent one.  It turns out that the people who really love me, who deserve to be in my life don't care.  They're happy to help because they love me.  They know that if the situation were reversed, I'd happily help them.  I've had to trust my support net, and they've been there for me wholehartedly.  So this is two-fold...I also learned who my real friends are.

8) I learned that some days are filet mignon, some days are PB&J.  Some days I can give it my all, I can be more like I was.  Some days it's easy to see the stroke as just "a thing that happened" and not a major life-altering event.  Those days are awesome.  I love those days.  Some days I can only do what I can do to get through until bedtime.  The PB&J days aren't often, but they happen.  And that's OK, because PB&J is OK.  It's not my favorite, but it's enough to get me by.

9) I learned that it's OK to say "no" sometimes.  And it's OK to quit.  We get taught to be limitless, to keep going no matter what, but it's OK to know your own limits.  It's OK to give up and it's OK to give it another shot at another time.  It's OK to say that you don't want to do something or that you can't or you don't feel up to it.

10) I learned that with a sense of humor, you can get through anything.

I learned a lot more than on this list.  I learned how to shave your legs when you can't stand on one of them and how to use the toilet when you can't use the muscles in the back of one of your legs.  I learned some other gross stuff, too, but that's not something you need to read about--or that I need to share.  It was a big year, and yeah, that stuff is all important to celebrate and think about.  But, not today.  Today I'm just gonna wallow in it.  Wallow with some cream cheese, because I can't have ice cream.  Boo.

It has been nine months since I had my second stroke.  I like to think I'm doing rather well, but then something will happen that brings me right back to the beginning.  I had a laundry list of things that were seeming rather "off", so I went to see the doctor last Tuesday.  It turns out that the blood pressure medication that I'm on causes swelling in the lower extremities, which means my ankles look like grapefruits.  I'm on a calcium channel blocker called Verapamil, which was chosen not only because of its benefits for blood pressure, but because it helps prevent migraines.  If I can have one med that does two things, that's better than two meds, right?

Except maybe not so much.

So, I'm back to compression hose, but now I have to wear the high compression hose, and there just aren't many cute options out there for high compression hose.  Well.  Unless I want to spend about $50 per pair, and I'm not exactly on a champagne budget, here.

I got new meds for my allergies, so I've switched that this week.  I was having some pain in my left shoulder, and it turns out that I've got a frozen shoulder.  I'm in the first stage (freezing), where it's painful, and then there will be the actual frozen stage, where I'll lose mobility, and then finally the thawing stage, where it will all magically get better.  In about 1.5 to 3 years.

So.  Physical therapy.  And I've been told it's going to hurt a lot.  A frozen shoulder happens frequently in white women, pushing 40, with diabetes, who have had a recent stroke.  Look at that....I fit all the categories.  What basically happens is that adhesions form in the capsule around the shoulder joint, causing thickening and inflammation of the capsule and limiting room for movement.  The only solution is to tear those adhesions and then allow the rest of the stages to unfold--hopefully in a smaller amount of time.  The medical name for a frozen shoulder is Adhesive Capsulitis.  Back in December, I fell getting out of the shower, and I thought this all resulted from that--and partially it might have, but partially it's from the stroke, too.  So my doctor thinks that what really happened is that the frozen shoulder is masking a potential rotator cuff injury.  I'll do six weeks of physical therapy, and then go back and see her--if it's not any better, then I'll go in for an MRI to see if I potentially need surgery.

My life is a total party.  Non-stop.

...but I really love it now that I have it!  I was having a hard time sitting still for an entire 8 hour shift.  At the end of each day, I'd end up with terrible back pain.  I talked to my therapist and my doctor and they both recommended a sitting/standing desk.  I asked my boss and he agreed.  I've been using it for two weeks now, and I am already noticing the benefits.  My back almost never hurts any more and I have a lot more energy--I thought it would take a LOT more time to get used to, but I'm already standing for an hour, sitting for 20 minutes throughout the day.  My feet don't even hurt, and I don't have an anti-fatigue mat.

I HIGHLY recommend everyone move to a standing desk!  Mine is an ergotron, and I think it's the best,  It's got a flywheel on the back support and that makes it very easy to adjust by simply pulling the desk part up or down.  When I'm in a seated position, the keyboard is below the surface of the desk, allowing for ergonomic use.  I also looked at the Varidesk, which is maybe prettier, but the keyboard stays on the surface of the desk when seated--not exactly ideal.

Anyway, I feel like I'm doing something healthy and good for myself by not sitting all day (which I now know is a major contributor to repeated strokes, so, yeah, I am.) and I'm burning about triple the calories I would be in a seated day.

All in all, a pretty good move.

Oh.  Did I mention that today is my 3 month stroke-a-versary?  Just by making it that long without another CVA, I've already reduced my risk of another stroke.  Sometimes, survival is enough.

This is the very last picture that was taken of me before my stroke:

It's slightly less than flattering.  It is, however, an accurate representation of what I would look like as a human-elephant hybrid.  Let's rewind a bit, shall we?

That's better.  On Saturday, July 5, my daughters and I were all ready to go to a Zumba class with my bestie and her two daughters.

We were late.  I wasn't all that upset.  I didn't really want to go anyway, but I was willing to try.  I thought I was getting a migraine, I felt kinda dizzy (I get vestibular migraines) and I had a weird feeling on my left like something was crawling under my skin.  I was on vacation, so I decided to power through it and we took the girls to the swimming pool.

I felt slightly better after a bottle of Coke and some time playing mermaids with my youngest, and I took the girls to see my Mom after swimming.  The plan had been for my bestie and I to go out dancing and drinking that night.  I was still not feeling really hot and we just weren't really feeling like going out, so we went to dinner, bought a couple bottles of Skinny Girl white cranberry cosmopolitans and went back to her place to watch Orange is the New Black.

I remember having that crawly sensation in my left hand and some heaviness in my left leg.  I thought it was part of the migraine I never got that afternoon.  I also remember feeling completely exhausted.  I think we made it through one episode and then I had to go to bed.  I know now that that heaviness and crawliness was the first symptoms of my stroke.

The next morning, I felt better..  I was still kinda tired, but I drove to my Mom's and we all went to lunch with my brother and his family.  At one point, during lunch, I tried to hand my Mom a plate with my left hand and couldn't hardly hold it.  As the day wore on, my left side became more immobile.  I spent the night with my Mom, on her guest bed.

I woke up feeling even worse.  My Grandma came into town that morning and then I asked my Mom to take me to Urgent Care.  I spent several hours there and then got diagnosed with a UTI.  I thought it was strange, but I didn't have any other symptoms of a stroke, I didn't seem really out of it and had no cognitive or speech impairments.

I went home and slept at my Mom's again.  I took the third dose of antibiotic and didn't feel much better--I actually felt worse.  Mom called Urgent Care and they said my culture was negative.  They told us to go to the ER.  Mom took me in and they ordered an MRI almost immediately.

The rest, they say, is history.

This is me now:

In the interest of full disclosure, sometimes this is me:

I don't always look all bad-ass, terminator-style.  Styling your hair one-handed isn't as easy or as enjoyable as you might think.  I'm still figuring this shit out.

I want to make sure I get the story written down.  I don't have any trauma-induced amnesia or anything about the event, but time tends to lend itself toward forgetfulness.  I'm largely OK with that.  But, someday I'll want to remember, just so I can look back at how far I've come.  I've come far, but I have farther to go.

So, one month ago today, I was admitted to the hospital after discovering I'd just had a stroke, which was only mildly more shocking than the news that I'd already had a previous stroke.

These are the worst vacation souvenirs EVER.

It's been a weird month since then.  A lot has changed.  I haven't been to work since June and it's making me pretty nuts.  I'd really rather be there, and my neurologist (yeah, I have one of those now) says that if I'm still doing well at my appointment on the 28th, he thinks I'll be able to go back on September 1.

I get the concern and I understand that I'm statistically more likely to have a stroke in the months closely following the stroke, so I should minimize stress and work to better conditions that might have contributed to this stroke, but sitting around worrying about money and trying to scrub a stain out of the carpet isn't doing me any good.

That's not all that changed.  I went from near-perfect health (except those damned migraines) to this:

And this device:

Everyone keeps reminding me that this is just a new normal, but it's hard to get used to.  I have six pills a day, four shots and four finger sticks.  I have therapy devices to bring with me, just in case, and a walker and a cane.  I have a planner I take with  me because I have to be sure I'm not forgetting an appointment.  It's hard getting used to requiring a checklist before I leave the house.  My life doesn't fit into a clutch purse anymore.

Fortunately, I have big purses, too.

I try to think of all the positives.  I have permission to not eat a bunch of junk.  I have permission to put my health on project status and to go to bed at a healthier time.  I have permission to drop some commitments.  But, let's be honest, this isn't a silver lining sort of thing.  These are now chronic conditions.  These are medical alert bracelet warranting things.  They're a serious, lifetime commitment.  It's not a matter of perspective and I can't find an upside, even though I tell people I can.  My meals are more a matter of mathematics than "What sounds good for dinner?" and a bigger ordeal than I want them to be.  I have medication STORAGE.  Portable and at home.

Ugh.  I know this is all important stuff.  I get it.  I don't want another stroke and I'll do what I have to do to mitigate my risk..  I know all the reasons why I have to do these things.  Understood.

What I don't get is why me?

There's no good answer to that.  There are answers that don't complement me.  The truth is, I made choices that contributed to this.  Poor sleeping habits, no preventative doctor visits which allowed my diabetes to run unacknowledged or treated since I had my youngest daughter five  years ago, not proactively treating my migraines.  I don't think anyone wants to think about those things, but there they are.

In fairness, other people do much worse and don't have strokes.  That's true.  However, that's not the hand I was dealt.  I don't know why me.  I want to ask it, but I know there's nobody to answer.  I guess the ultimate answer is simply "Why not?"

So, I move forward because there's no other way to go.  It's forward or stagnate, and I never was very good at sitting still.

One month down and many, many more to go.

As a result of my stroke, I have some deficits on my left, most notably, I lack fine motor skills in my left hand and I lack coordination between my left and right hands.  I also cannot feel the muscles in the back of my thigh and commands aren't well received to my left hip.  This makes it tricky to walk, so I have to use a walker.

This is Josephine.  The girls and I decorated her with some decorated duct tape.  I figured that if people are going to stare anyway, they might as well have something to look at.  Hopefully, I won't need her forever, but while I have her, she might as well be cute.

In the rehab hospital, they gave me the bag that hangs over the front.  It's really useful for carrying meds, my glucometer, my planner (because I have so many doctor's appointments any  more, I can't remember them all) and my therapy tools.  That way I can do my hand exercises anywhere I am.

I really don't have anything profound to say right here.  Or at all in general.  Today is kind of a blah, staying at home day.

So, I had my stroke while we were on vaction in Colorado, visiting my family.

Worst vacation ever.  I also have some of the crappiest vacation pictures ever.  Some great ones, too, but I digress.

One of the first things we got managed when I got home was the obtaining of a permit that allows us, when I am in the car, to park in the blue-marked spaces specifically for those of us with physical disabilities, permanent or not.

It's legitimately one of the only real perks of having had a stroke.  The other includes the ability to say "Oh yea?  Well, I had a stroke."  When people bitch about stupid shit.  It's not nice, but it's effective.

This brings me to the point of my post today.  If you do not have a parking placard or plate, OR if you are not disabled, but you think it's clever to borrow someone's placard or plate and in either instance, you park in the spaces reserved for people with disabilities, fuck off.  Fuck off away from the parking spaces, fuck off all the way down the street, continue fucking off until you get to your home, and then once you're there, go ahead and fuck off once again until you learn the lesson, dick.

OK, I get that it's a mild inconvenience for you to have to park five or six spaces farther from the door because of these parking spaces.  And I get that you're just "running in real quick" and it'd be so much faster if you just used that space "REAL FAST".  I understand, you're a "good person" and blah, blah, fuckedy, fuckedy, fuck.  Let me make it really, really, real here.

It is completely motherfucking inconvenient to have a physical disability.  It's EVERY GODDAMNED DAY.  I live with it.  I can't just run to the bathroom, it takes me several minutes--fuck, I can't even stand up without help.  So screw your urgent "real fast" Wal-Mart needs.  You have two legs that work, use them.  I cannot walk the distance from the parking lot to the store entrance without exhaustion and knowing that I now have to calculate my shopping needs to accommodate the trek in from the lot that people who just want "good parking" forced me into.  Those aren't there for convenience, they are there because they are NECESSARY.

I was bitching about this to someone the other day and she said "What's the big deal?  Just use those motorized carts."

Uh.  So many different problems with that.  Let's go:

1) There are people who legitimately require those carts because they cannot walk and be independent without those.  It takes me time, and it's not graceful, but I can walk.  Unlike the fuckwits who park in spaces they are not entitled to, I will save the necessary equipment for those who actually must have those.  Even the wheelchairs that have baskets that some stores have--others still require those more than I.  Also, have you ever tried to steer a wheelchair without two functional hands?  I run into things.  A lot.  My left hand only really works when I want it, too.

2) I am a large woman.  I was conspicuous before the stroke and had to listen to plenty of strangers comment on my appearance on the daily.  I now use a walker.  I'm privy to plenty of stares and whispered questions and comments also on the daily and it's assumed that I need the walker because I'm FAAAAAT (I'm not THAT big.).  Do you know what people say and think about large people who use those carts without exceptionally apparent disabilities?  I do.  It's not nice.  People are not nice.

Look, I get that the whole wide world seems grossly unfair when you see all these extra lovely perks that people who face daily challenges are awarded.  All one or two of them.  You poor, sensitive darling.  It must be tough.  I really, really feel for you.   The thing is, it's much more difficult when you have to plan your day based on only being able to walk for five or six minutes at a slow pace before you have to stop.

Let me keep this one small perk that I get.  There aren't that many.

Hello, all.

So, this is my third time with this whole blog thing.

I kinda suck at blogging.

But, it's important to get this put down in words somewhere, so I'll have to give it a shot.

I'm Amber.  I am 36, the mother to two girls and in reasonably good health and a solid Type A personality.  Well, that's what I was.  Now,  I am still Amber, I still have two daughters and now, I am no longer considered to be in reasonably good health, and it might be a matter of life or death for me to chill out of the Type A. You see, on July 5, 2014, I had a stroke.

It actually turns out that I've had TWO strokes, as you can see in the picture above.  The part circled in yellow is the area of my brain called the Pons.  It's the portion of your brain between the part you consider your brain and your brainstem.  It's sort of the way station between the commands your brain sends and the command that gets sent to your body.

In that circle, you can see two white spots in the center.  Notice I said 2.  The bigger one that's closet to center is the stroke I just had in July.  That second one is a stroke I had some other time that I never knew about until now.  It's rather scary that you can have a stroke and never know.

As a result, I have no cognitive impairment, no amnesia of the event, no speech or swallow issues.  I do have left sided weakness and I am relearning to walk and use my left hand.

That's a lot less fun than it sounds.  But, as everyone wants to remind me, I got lucky that I'm quite minimally impaired.

I don't feel that lucky and minimal impairment is taking quite a toll on my life.  I'm out of work until September, hopefully only that long, and I have a lot of medications, therapy and doctors to keep track of.

My "impairment" is likely not permanent, but it's likely that I will retain some of my disability for the rest of what I'm hoping will be a long life.  But that life is going to be a lot different than I had planned--and I'm slowly realizing that it's going to be OK.  I'm not going to be that superwoman who juggles a career, a Girl Scout Troop and a Master's degree program flawlessly.  I'll still get that Master's degree, before Christmas, even--but I might not get a 4.0.  That's hard to let go of.  Really hard.  But, if I weigh it against what I gain for letting go, it gets easier.

It's kind of a relief in a way.  I've spent a lot of my life living up to standards I thought other people demanded of me, and I'm discovering that people are OK with me being fallible and human.  The truth is, the people who love me will love me if I have to say "No" and if I'm not perfect at everything.  My kids don't even expect superhuman qualities out of me, and they still think I'm awesome.  In fact, the only person who's even slightly concerned about when I'll be "back to normal" is my boss, and he's more concerned that I'll try to go back to work early and that I won't take care of myself.

There are some learning curves as I work to navigate through this new path my life has taken.  I still have expectations of myself that aren't reasonable and people are used to me being a certain way--when I don't look disabled all the time, people forget that you are.  But, we are all learning together.

So, this is a blog to document the journey.  Not a destination or a result, but the journey.  Because it's time that I slow down and start respecting that all there is to life is the journey.  And if I'm not enjoying the journey, I'm just rushing headlong to the end.  I'm not ready to be there yet.