Thursday, July 31, 2014

White Tips meet Vietnam

On all fronts therapy and my rehabilitation is going well.  My speech still has its days, moments, hours, it seems, but it is mostly I find when I'm overwhelmed or tired that I start stuttering or slurring my speech or can't remember words.  And it happens at the most inopportune times too.

Yesterday, after letting my nails grow for the past 2.5 months, I decided that I wanted to treat myself to a manicure.  They had grown long enough that they were all a respectable length and decent looking and for the first time strong, it seemed, so I decided to take further care of them.  After my appointment with Dr. S on the way home I stopped by a local shop called the Nail Lounge because their sign said that walk-ins were welcome. 

As I walk in the door I am immediately accosted by an older than normal Vietnamese woman.  In her broken English she said, "you need help?"  I explained to her that I'd like a manicure.  I really wanted, a French manicure but for the life of me I could not think of that terminology so I just said, "white tips".  From out of nowhere, the old woman pulls a box of colored nail samples with every color and design under the sun.  She shoved the box in my face and said, "what color".  I motioned toward my finger tips and said, "just white tips please."  By now I was getting a little unnerved and trying to figure out how I could leave the place quickly since I had obviously bitten off more than I could probably realistically handle at the moment.  By the way, there were no other clients in the entire establishment.  Just me and three Vietnamese women.  She waved her hand in front of me and showed me that every single one of her nails had a different color and design on them, she said, "gel?"  I said, "no, just my nails, white tips."  Then she tells me to sit at one of the three work tables that they had set up.  I sat my purse down and sat down.  The second worker came over and said, "acrylic?  You get design.  Design very nice."  I said, "no thank you, just white tips."  Second woman said, "ooohhh....white tips...."  and went back to her seat.  The old woman came back and said, "no white tips here, you go sit over there" and motioned to the back table closest to the third woman who was eating some weird fruit and had it all smashed in her face like a gorilla eating a cantaloupe. 

I sat down at the back table and held my purse in my lap, at this point really trying to gauge how on earth I could escape.  My head was starting to hurt and I couldn't understand this woman and she was obviously not understanding me.  She came over to the table and tried to turn on the work lamp and it wouldn't come on.  It was unplugged I could tell because the cord was dangling down on my side of the table.  I held the cord up and showed her.  She muttered something and said, "no white tips here...go there."  And motioned for the middle table.  I finally moved to the final of the three tables and was getting more and more nervous with each move.  Then, old woman came back and sat down and said, "so sorry, white tips" as if White Tips was my name.

I nodded and held my hands out and she looked at my fingers and said, "ok...white tips only".  I nodded and said, "yes, please".  My mind was racing.  I needed a nap.  She pulled out nail clippers and before I could yank my hand back she said, "just straighten".  I admit I had a few nails that were a little longer than others so I thought she was just going to even them all out.  Nope!  She cut my nails.  My long beautiful nails were cut.  Not completely off, but they were no longer as long as they had been.  I was mortified.  I wanted to cry.  She just kept patting my hands and saying, "it ok, white tips". 

For the next hour and half, she slowly, and when I say slowly, I mean incredibly painfully slow, painted my finger nails.  At one point she asked me a question that I swear was, "do you like Coke?"  And I said, "yes, I like Coke."  To which her response was, "nah....fllllpppp" (just some uttered noise that let me know that she was not asking about my preference in soft drinks).   When I mentioned with a smile, about an hour or so into the process that I hadn't had a manicure in a long time and this seemed to take a lot longer than usual, she said, "I hurry, white tips".  Then within the next 15 minutes she was done and massaging my hands and arms.  Which I would definitely return just for the hand and arm massage but not without taking a nap and an native speaker with me. Needless to say, my speech rehab probably needs to get a bit better before I attempt non-English speaking as a primary language conversations again.  But in the meantime, I have beautiful white tipped fingernails and if I do decide to go back, ya never know, I might just get a color or design.

Tuesday, July 29, 2014

Flowers of my Heart....

You know the quote about some people being seasonal?  How they are in your life for a season and then their friendship or purpose that God wanted them to serve blooms and they move on like a seed in the wind.  Over the past year I have really learned what kind of flower garden I have and which ones I want to plant more of in the future.  What I want to spend my time cultivating and what I want to enjoy while they are here, but when they go, learn not to be heartbroken, because this blooming season is over and they did not come with the little plastic card labeling them as a perennial. 

Amazingly, when word gets out that you are in the hospital, people you haven't spoken to in YEARS come out of the woodwork wanting to know what happened and how they can help.  When they hear the story, they slowly go back to doing whatever it was that they were doing when the Newsflash of something interesting happening on Aisle 1 came across their screen.  I'm just as guilty of doing this in the past.  I'm trying hard not to do this anymore.  It's part of the new boundaries that we are setting in our home also.  We used to be really transparent and open with everything pretty much.  But we are learning to guard ourselves more and more.  Not everybody is on a need to know basis. 

Proverbs 4:23 tells us to "above all else, guard your heart, for everything you do flows from it." I read recently how this verse can be easily equated to physical hearts as well as spiritual hearts and the correlation between the different physical heart ailments and the different spiritual heart ailments.  I've made it a goal of mine that as we are getting healthier at our house, we are not going to have any hardening of arteries, physically or spiritually, good bye high cholesterol and regret and anger and denial.  Even though I may have a physical heart murmur, we are going to make every effort to not have any spiritual heart murmurs.  I can't help the fact that the valves that act as doors to my physical heart sometimes let blood flow backwards into the heart.  I CAN help the fact that my spiritual heart complains, takes part in gossip, disputes and arguments.  No more.  It is not healthy.  It is not what my purpose is.  If you, dear flower, come to me with these types of things, please understand that the door may be shut and not opened.  It's a new boundary.  As we are working on our high blood pressure in our home to keep physical congestive heart failure out so we won't have a weakness in the walls of our hearts, I'm getting rid of the spiritual equivalents of it...being quick to anger. 

Now the question becomes, what kind of flowers do you have growing in your heart's flower garden and are you an annual or a perennial?

Monday, July 28, 2014

Firing my Pink Boss...

I used to live in the corporate world.  If you recall back at the beginning I mentioned how I (we) made the decision for me to tackle the world of small business ownership in the middle of 2010 full-time.  Prior to that, we had a person come in once every week or two to help clean up the place.  Do the heavy cleaning.  I mean, I had a small business I was trying to run in the late evening/nighttime and a corporate job and Tommy had a full-time job and so it helped to have a third person helping out.   When I jumped into being my own boss, we let that person go because I had visions (although they were sugar-coated and probably sleep-deprivation hallucinations) of running this business that I had been doing in the wee hours of the morning during the actual daylight hours, and since I had been doing so much from 9pm to 2am or so, I could just imagine what I could accomplish with an entire 24 hours!!  I could keep a clean house, cook a great meal (so no more fast food drive-thrus on the way home from corp job), and STILL get my business work done.  Right?  WRONG. 

I tried really hard to do that juggling for a few months.  And for a few months (maybe May through August of that first year) I did okay.  But then the fall came and that is my super duper busy time.  So in September things started slacking a bit.  No big deal, Tommy understood.  And by the time January and my busy season was over he had tax season and a plethora of work projects of his own, and I had a big show coming up in February so we'd catch up in March.  Needless to say, by the time we got a second to get "caught up" on everything, we had created a nice little hoarders paradise.  Or the beginnings of one anyway.  Nothing horrible.  I mean, our house was still functional.  We just had a pile of this or that in that corner or on the end of that table, or whatever and predominantly it was stuff related to my business because it had taken off like a jack rabbit on steroids and seemed to explode in those first 6 to 8 months of my full-time focus.  Which was good, right?  That's what you want a small business to do. 

The thing was, neither of us had our priorities or time budgeted properly.  In fact, it is a brand new concept to me, honestly.  I have always lived by the power of the DayRunner (in my corporate days I can't even begin to count the number of classes or seminars I had attended on planning and time management...but none of them like I'm learning now).  I have an awesome pink leather 3 inch thick monster of management that has the crazy color coded tabs and notes sections and what have you.  If it isn't in my dayrunner then it isn't happening.  To give you an idea of what a typical day in my dayrunner looks like, I will tell you that I have been planning for 3 very large shows this fall.  So in April, I sat down with my pretty pink boss and listed out every single thing that I would do starting May 1 through mid-September...every day.  How many of each item I would make, what designs, and so forth.  I even could tell you what days I would be at which of my stores to restock and clean and what days I was planning on making deliveries, if needed.  I had my plans and my marching orders and this is what was going to make it a successful, stress-free fall.  Or so I thought. 

What I didn't allow for was time for rest, time for domestic duties, time for health and wellness, time for creativity and fun, and time for church and family and all the other things that needed to be at the very top of the list to keep going.  I know I said it before and I'm going to say it again, God allowed 2 strokes to occur in my life.   This second stroke, I was still a bit unsure as to the lesson in it, but I knew there was one.  As I am slowly exiting the physical therapy section of my rehab and entering more of the mental and emotional rehab portion of it, I'm now seeing the lesson.  It's still very fuzzy, but for the first time I was told to get rid of my lovely pink dayrunner and all of the lists and get a very basic calendar without all of the bells and whistles.  That was almost cause for a heart attack in and of itself.  I remember having to remind myself to breathe when I was told that. 

So, I've tucked my beloved master of time and lists into the back of my filing cabinet where it will take a very extended sabbatical and I've purchased the simplest calendar that I can find (just wish it came in hardbound form instead of a soft-cover) that will still fit the current situation.  All of this causes great anxiety and concern because this is not how I was "trained" to effectively budget time and projects.  I mean, I've been through the classes and seminars and I am certified in Priority One planning.  This is NOT how it is done.  The only thing is, I was certified to be a business planner, a project planner, a corporate planner.  None of that, even though they roughly touch on "your outside life" in those classes and seminars covers life.  Real life. 

We used to do the mad-dash cleaning when we caught wind that somebody is coming over.  Everybody has done it at some point in their life and you are lying if you say you haven't.  Grab as much stuff out of the common areas as possible and throw it in a room with a door that can be closed and not visited and then pray the guests don't stay long.   No more.  You are welcome into any room in my home.  There is one room (the storage room for the business) that is still lacking, but you are welcome there if you so choose.  Just don't expect it to be comfortable and peaceful yet. 

What I am finding though, with my pink beast quieted, is that my creativity is coming back.  Through Art Therapy I'm starting to explore new ways of creating and finding those things that were tucked back in the corners of my brain are coming forward.  For 3 years I had a winning formula and set colors and designs and would just repeat the same stuff over and over because it was working. 

Now I'm starting down a different, new, untraveled path.  It's exciting, it's curious and it's scary but it is also controlled with boundaries.  Safe boundaries. And these boundaries are going to slowly be implemented across my entire life in all of the caveats that I had neglected previously.  People, some of them customers, some of them family, and some of them strangers, will be upset with these boundaries.  And that is okay.  That is their issue to deal with, not mine or Tommy's.  The first phase of the boundaries have been set in place, and I will say, our house is much neater, more stress-free and peaceful.  It has not been easy.  It has been very hard.  And it will be very hard.  I'm a people pleaser and I don't like to say "no' or 'I can't/won't". But I will learn how.  I HAVE to learn how. 

Friday, July 25, 2014

Do the Kangaroo Hop.....

Physical Therapy is going well.  I'm feeling good.  Still not 100% and they say it'll be a while before I'm back to the way I was pre-stroke but in some ways I'm better than I was pre-stroke.  I rest more.  I am learning my limitations (a lesson I think that will take a really long time).  Tommy, as he has always been, is super helpful throughout this entire process.  We've started taking nightly walks around our neighborhood with Shadow to help build endurance.  Me wearing my bright pink heart monitor and us taking readings every block or so to make sure that my ticker isn't running overtime and Shadow rabbit hunting. 

When I say rabbit hunting, she is not really hunting them, to catch and kill.  We have her on a harness and leash and she is the funniest thing to watch because as we are walking in a straight (or as straight as two uncoordinated people can walk) line down the street she is "on patrol" checking the yards on BOTH sides of the street to see if there is any living animal she might be interested in "going after".  I call it the drunk prance because it is in no way similar to the way she normally walks.  She is on full alert and on her tip toes it seems and she is maneuvering back and forth from side to side looking at both sides. 

She LOVES to rabbit hunt.  When she spots one, she will immediately stop and stare.  Then for a long few seconds/minutes, she will stare down the spot, which is good because half the time it takes Tommy and I that long to figure out what it is that she has spotted and locked in on.  Then starts her slow creep.  Tommy usually humors her and with his super strong grip (Shadow is the strongest dog I've ever felt on a leash when she is after something so he has to hold her leash when we walk.) will give her some leeway.  Which usually means he lets her get from the street up to the sidewalk but not into the actual yard.  So she creeps quietly towards her rabbit.  And then its as if she knows she is almost at the end of her leash and when she gets there she tries to lunge at the rabbit but it turns into this really funny kangaroo hopping that makes me laugh so hard.  She hops a few times and then circles back to us with the saddest, begging eyes as if to plead with us to go play some more with her new friend.  By this time the poor rabbit has darted off and we continue our walk.

We also play catch a lot at our house.  I know it sounds silly but we have a kids bouncey-ball (about 10" around, just smaller than a basketball) and a couple tennis balls.  We play catch a lot.  Shadow is really good at fetching too so she even helps me.  I throw the tennis ball with my left arm and hand (helps so many muscles) and she will fetch it and return it to me.  Then I throw again and we repeat the process. 

My arms are getting stronger but they have even further to go still than my legs to get back to pre-stroke condition.  I have gone from lifting the 3 pound dumbbells at OT to the 6 pound dumbbells.  It wasn't an overnight change, we've been working our way up.  I laugh every time because again I keep imagining my 5 foot nothing super-strong cousin as she lifts her 25+ pound weights.  Here I am, I have a good 6 to 8 inches on her and I can't even do a quarter of the weight she does.  It's all about perspective.  Just because you are bigger, doesn't mean you are stronger or better.  It just means you are not there, yet. 

Wednesday, July 23, 2014

That's Fair....

I've learned a new medical term over the course of this rehab.  It's a magical set of words.  I think they teach it in some class like "beginning anatomy" or "intro to the human body" or some other human-related, non-liberal arts, science department course because EVERY medical professional that I have on my team has used this word with me at some point since Stroke2 occurred. 

Mama uses the phrase constantly.  Dr. M has used the phrase a handful of times.  Oz has used the term.  Wheelie has used it.  All of them.  And then today when Dr. S used the term, I had the light bulb moment that this truly was a medical phrase.  The phrase could have a number of meanings but I've never heard any other professionals in other fields use it as consistently as in the medical field.  Are you ready for the phrase? 

"That's Fair" when I think of the word fair, I think of the county fair.  The carneys that come rolling into town and the animal barns with all of the manure stinking up the place and the ferris wheel that you don't dare ride even though the department of public safety has issued their big "it's ok today" certification to it.  Building after building of Miss So & So's homemade rhubarb pie and her neighbors handmade quilts.  All with shiny ribbons hanging on them.  That's what a fair is to me.  But when the medical team uses it, they use it in a different way.  Not to be a noun.  But as an adjective.  (Didn't know you were going to get an English lesson today, did you?) 

Usually when Mama asks me how a certain exercise is affecting me and I respond, she will say, "That's Fair."  Because it is.  It's unbiased.  It's candid.  It's sincere.  When Dr. M asks me how I'm sleeping or doing or whatever and I respond, she will say "That's Fair."  Because it is.  It's straightforward.  It's reasonable.  When Oz or Wheelie ask me how my medications are working or if I've experienced certain side effects and I describe what's going on, they respond, "That's Fair".  Because it is.  It's frank.  It's Honest.  It's Legitimate.  And today when Dr. S asked me how I was doing on thinking about what we discussed last week and how I felt we should start with the implementation of the plan and I responded, he said, "That's Fair."  Because it is.  It's Objective.  It's Praiseworthy.  It's Respectable. 

My life as I knew it has changed.  And That's Fair.  My life moving forward is going to be amazing.  And That's Fair.  It will not happen overnight and I have to understand that.  That's Fair.  It's Sincere.  It's Good.  It's Trustworthy. And it's Fair. 

Tuesday, July 22, 2014

The Ten Commandments of Self....

Today's post I am borrowing from a friend, with permission, Mary Costanza wrote the Ten Commandments of Self and she says it so much better than I could ever say it.  However, my commentary is in the italics under each one. 

The Ten Commandments Of Self

1. I shall not hide, be ashamed or embarrassed of who I am. I shall embrace everything about me. My imperfections, age, beauty, talents, intelligence, all of it.
This includes the times when I am tired and start to stutter, and when I feel like that girl on the tv commercial that says, "Use Your Words" to the door-to-door salesman.  I would love to use my words sometimes, but they just wont come out.  It also includes the times when I have to go slower. Slower than I normally would because this is the new way that I operate.  I'm no longer in the fast lane.  Call me a slowpoke or whatever, but my body doesn't go that fast anymore.

 2. I shall not hide the pain that I have experienced, I will acknowledge it, work on it, and learn from it and let go. I shall not keep it buried deep down inside of me anymore.

I'm all for being transparent.  I've tried my best to be that way here.  I will always show the whole side of everything, the good, bad, and ugly.

 3. I shall not speak words of negativity about myself. I am whole, and yes, life may have wounded me, but I am whole. The wounds need time to heal, I shall be patient with myself during this process, and give myself as much time as I need.

This one is super hard for me.  I have a lot of frustration with myself daily.  Minute-by-minute is a new journey.  But it is one that I am taking.  I will not just say, "well, strokes suck, time to curl up and die now."

 4. I shall speak words only of kindness, words that empower, words of compassion and love to myself daily, even on the toughest day when I am angry at myself. I shall have unconditional love for myself.

Another super tough one.  Mary really is pushing my limits here.  I mean, I just agreed to be positive and now she wants me to be kind and show myself unconditional love.  I have had a talk with her and think that she may be asking a bit much on this one, but I will try. 

 5. I shall nurture my heart, mind, body and soul. I shall create an environment both inside and out that is supportive, loving and no judgmental. I will feed my heart and soul with love, and fuel my body with nutritious foods , and exercise it daily. I shall feed my mind only with thoughts that provoke curiosity and wonder and strive to seek the answers.
I'm learning to do this.  It is definitely easier said than done.  But, let's just say I have the provoking curiosity and striving for answers part down pretty well. 

 6. I shall not take the negativity that others say so personally, everyone has an opinion about me, but that opinion does not define who I am.
Ouch.  This one is super duper hard.  I think that Mary may be overstepping the line here.  But, I'm willing to give it a try.  After all, I'm a people pleaser.  How can I not take opinions personally. 

 7. I shall give myself rest, forgiveness, and attention.

Rest.  Okay, I got this one.  Trust me, my pillow and I have become close friends over the past several weeks.  Forgiveness.  Yeah, we'll glide over that one.  I have a lot of screw ups.  Attention...okay Mary, really?  Attention.  no thanks.

 8. I shall learn my limits and say “No” when feeling overwhelmed, without guilt and shame.
Well, this one, dear friends, is going to happen whether I like it or not.  The Warden will make the "saying NO" part happen even if I don't/can't.  The without guilt and shame part is a different story but Dr. S and I are working on this one so that The Warden doesn't have to step in and so that I can do it all by myself.

 9. I shall not allow others to dictate my decisions; I am strong enough to make my own.
This kind of goes in line with #8.  Dr. S and I are working on it.  I am very strong but I cave in to guilt trips a lot and those are vacations that I don't want to, nor need to take any longer.

 10. I shall no longer beat myself up about past decisions, choices and mistakes that I have made, because now I realize they were lessons that had to be learned. I shall have no regrets.
God has an interesting way of using the very last one.  I am still learning.  This whole journey has been a lesson that I am not sure I will graduate from any time soon.  But, for today, I will accept it.  And that's really all I can do.  Just today.  Tomorrow, however, is a different story.  ;)


Monday, July 21, 2014

The Carnivals of Chaos end here...

One of the things that stroke patients experience that there is no amount of PT or OT or any other kind of therapy for is the fatigue.  Not the kind that you get when you've done yard work all day or pulled a 12 hour shift at work, but the brain fatigue.  You see, my brain now has to work even harder at keeping up and remembering things and following simple evolutions in conversations that previously I may have been light years ahead of.  Prime example was a few weeks ago I had some relatives visiting from out of state and there was a family get together at my grandmother's house.  Any normal time pre-stroke, I would have been able to keep up with the conversation between Aunt A and cousin B and the one with Aunt B, Aunt C, Uncle D and grandma in addition to whatever conversation I was personally having with the person right in front of me.  It's always a carnival of chaos when these family members get together because everybody is talking all at once and every body is loud but I could always manage to communicate with them all.   Guess that's a nice way of admitting that I have a big mouth too.  During this particular visit though, it was too much.  Too much noise, too much chaos.  I struggled, and struggled is the true word in this instance, to keep up with the one conversation that I was having with a loved one sitting next to me.  I can't handle the carnivals of chaos any longer.  My brain shuts down and says, "it's closing time...exit here". 

I joke that I've become a hermit but in reality it is my own way of protecting my brain.  After a handful of outings to loud, energy-filled places (the grocery store, Wal-Mart...which is a story all in and of itself.., other family gatherings, etc...) I've realized that God doesn't want me to be part of the carnivals of chaos.  I think that He wants me to focus.  Focus on what is right in front of me.  Not what is happening in the half-mile radius to every single person around me.  But just what He has placed right there square in my lap at the moment. 

I fear that my new reclusion may turn some people off and make them think that I'm being rude.  Realized this the other night during our first outing to a local sporting event.  I had a hard time keeping up with the game, the conversation of the people we were with and the entertainment provided by the team.  It was another a-ha moment when I found out that I can either have a conversation with somebody or I can watch the game, but I cannot do both any longer.  When we left, the whole drive home I felt bad because I am sure that I missed parts of conversations because I was focusing on the game at the moment. 

One thing that this brain fatigue is causing, other than the one-track mind ability, is lots and lots of naps.  I have no choice any longer.  Yesterday after a particularly peaceful outing, but one in which we met a lot of people that I hadn't seen a great while, I came home and within 20 minutes of being in the door fell asleep...for 4 hours.  I would probably have slept the entire night had Tommy not woken me up and asked if I was hungry (I fell asleep before we even ate lunch).  Then I was awake for about 3 hours and then fell back to sleep for another 7 hours.  My mind, in the peaceful setting, was overloaded with names and faces and the beauty of the place that most take for granted.

I remember growing up, we were always out of bed at the butt-crack of dawn it seemed on the weekend and the mantra was "you can sleep when you're dead there are things to do now".  Let me be the first to tell you....that's overrated.  There is nothing so important that rest should be deprived.  I'm still battling with the fixation that if you sleep or nap you must be lazy (again one of those mindsets that is planted deep in my brain from sometime long long ago) or if you are awake you MUST be doing something productive.  It's just not how I'm programmed.  Needless to say, we (my medical team and I) are doing some reprogramming in the next few weeks.  We have to.  It's the next step in rehab. 

Saturday, July 19, 2014

The exit of Rabbi...

The Tin Man has been oiled!  The IV infusion went so much smoother than anticipated (the new infusion nurses at Oz's office rock!).  I think there was a bit of a misconception based on my last post so I want to clarify.  With RA, you may find drugs that help, but you will never, ever be 100% pain free.  You will have days of lesser pain, or medications that make it endurable, but RA patients learn to "suck it up sister" and move forward.  Otherwise you are gonna end up wallowing in your own little world of "I hurt" everyday and you will be of no use to anybody.  I honestly can't remember the last pain free day I've ever had.  There are days that maybe my hands are killing me or days that my knees feel like they will crack open at any moment or my feet want to scream if I take one more step on an ankle that wants to just stop working.  But you learn to quietly deal with it.  The medication I receive via IV is the one over the years (and I've been on a lot of them in the course of 19 years) that has given me the greatest relief and the one that works best for me. It may not be the best one for somebody else, but it is for me.  Consult your physician before starting any new medications, blah, blah, blah....end of commercial about that. 

I'm at a weird point in rehab right now.  My strength is gaining and my stamina is building, but I'm still not 100%.  If you didn't know me and were a stranger looking into my world from the outside, you wouldn't know that.  But, if you interacted with me on a daily basis and really knew me pre-stroke, you'd know I'm not back yet.  So the point I'm at currently is one of frustration, but determination.  I have to break through that barrier and finish this race. 

The frustration comes because there are some things that I CAN do that I couldn't do just 2 weeks ago.  So in my stroke-brain, I think "oh I can do that, so I must be able to do THIS also (whatever THIS is...) but that's not the case because the second task may be heavier or harder or require more complex thinking or whatever and I just cannot do it.  That's a hard thing for me to say.  That I cannot do something.  You see, I'm a people pleaser and my standard line up to this point in my life is "of course I can do that, I'll get right on it and let you know when it's done".  I think it's on a tape reel in my head that automatically comes on when I nod my head.  Like a little robot.  Nod the head, mouth opens and out comes the words.  And it plays constantly in my mind as I'm working on tasks around my home in weird and demented ways.  For instance, if I'm folding laundry in the living room, I suddenly look at the wall and think, "I can fold laundry, surely I can paint that wall."  Two completely different tasks requiring two completely different sets of ability, but dadgummit, I really want this one wall in my living room painted.  So I'm working hard on wearing the Warden down to let me try.  It's just one little wall.  Of course I can do it (so I tell myself).

Sadly, as all of the hard work and determination is paying off and progress is showing, we had to say goodbye to Rabbi yesterday at PT.  It was the last day of his clinical rotation.  He really was an awesome asset to my rehab team.  He made me laugh, he worked really hard to keep me safe while still pushing me to my limits so that I could see exactly how far I could go and I can tell that in the future wherever he ends up he is going to be a great physical therapist.  I'm a little sad to think of what PT will be like next week without him.  But, Mama, LittleBit, Irish, DuckLady and Mr Miyagi are all still there to torture me appropriately so I'm confident that we will continue to make amazing progress...I think, I hope.  We'll see next week I guess. 

Wednesday, July 16, 2014

Fat girls like Cake.....

After battling the black beast known as The Arc trainer for 2 minutes and having an explosive heart rate in such a short amount of time the other day, Mama and Rabbi determined that they would devise a plan to work on my cardio health as well as my balance.  Tommy went to Academy and purchased an awesome heart monitor for me to wear so we can see what activities and movements are causing the sudden bursts in heart rate.  So now not only do I have an implanted monitor recording things for the docs to see, I have one I can wear around my wrist and get immediate results.  Having the bubblegum pink accessory attached to my wrist reminds me of something that I would have worn in elementary or junior high and every time I look at it I almost expect a Hello Kitty face on the front of it instead of the time, heart rate, or other of its various features that it can flash at me. 

But having this monitor has also allowed us to be more progressive at physical therapy.  Now, instead of walking tracks with Jack, I'm able to get on the treadmill and walk a certain time or distance because not only is my gait getting more fluid but my balance is becoming better.  We just have to make sure that my heart is not deciding to do a break dance. 

Rabbi also determined that this would be a good time to work on something called "Ice Skaters".  It helps with balance and strength and I don't know what all else.  Imagine if you will, an ice skater skating laps around a track.  Stand up, bend your knees slightly, then with one leg at a time (like balance on your right leg and do all of this with your left or vice versa) reach your opposite leg out and touch the toe down on a given point straight out to the side as far away as you can (extending your stride).  It's easiest, much like an ice skater, if you fold your hands behind your back for balance rather than letting them flail about in the front or the side.  Do that for a solid minute and see if your thighs and butt and whatever else isn't screaming!!  And if Rabbi forgets (like he sometimes does) to push the start button on the stopwatch, you get to do it for TWO minutes!  Trust me, this fat and sassy girl is working muscles and becoming more flexible than I was pre-stroke I think.  Heck, I even sat criss-cross applesauce the other day (indian style) at PT on one of the stretching tables. 

Another exciting (is that the word you use in this instance?) thing that is happening this week is that I am going back on the IV infusion of my RA meds.  Yes, it means I'll be sitting in an infusion lab for an hour or so being fed medication through a tube in a vein that I'm hoping and praying that they don't have any trouble finding, and yes, I will be drowsy and likely sick for a day or so afterwards but then I wont have to endure it for another month.  That's what I'm looking forward to the most.  The month (or practically a month) of relative pain free movement.  When I say relative pain free I really mean endurable.  Right now I have what I call the Tin Man syndrome.  Only it wouldn't really matter how much oil Dorothy put in me, it wont stop the ache and creakiness of the joints.  So, I'm off to be "oiled" in about an hour.  I'm just hoping that I feel well enough for PT on Friday because it's Rabbi's last day of his rotation and I want to be there.  I heard a rumor that there will be a party, which means cake, and as a fat and sassy girl, I like cake!  So crossing my fingers that this infusion goes well and I'm eating cake on Friday. 

Monday, July 14, 2014

The Demons of Doubt drive a Dodge

Although I try to hide it or don't talk about it very often, one of the main things that stroke2 has taken from me is my self-confidence and assurance.  Pre-stroke I thought I could conquer the world and I wouldn't mind telling anybody and everybody, loudly.  Now, I really have to stop and think about that whole conquering thing.  I mean, the world is a really big place after all. 

I am making tons of progress at physical and occupational therapy.  But just like moving from walking with Charlie to Jack was enlightening and freeing, it was also very scary.  Now that I'm starting to move from walking without Jack, it is absolutely terrifying.  I have to remember a ton of stuff.  Keep my head up, feet pointed straight, lift my left foot, move forward...these things that people normally just do, I have to actually remind myself of because otherwise I'll end up looking at my feet to make sure they are pointed straight and being lifted and I'd end up running into something I am sure.  It'll all come back to me, they say, but it just takes time.  And in the waiting, is when my self-confidence gets whittled away.  The demons of doubt show up and whisper, "you can't even walk like you are supposed to, how are you going to be able to do anything else?"

With the doctor's approval, The Warden has allowed me to be the driver in the car a few times as long as he is in the passenger seat.  After not having driven for 2 months and not liking the art of driving pre-stroke anyway (I only did it out of necessity), it was extremely nerve-wracking to get behind the wheel.  Keep in mind that I grew up driving a lot with my grandfather.  This is the man who once told my cousin and I as we were driving to a family reunion along the highway, "The speed limit is 60, you can go 45 if you want" and he sincerely meant it.  I often reflect on these words as I'm driving as a reminder to slow down and pay attention to what is going on around you.  If you are going 60, did you see the billboard that somebody paid good money and an artist worked hard to create for you?  If you are going 60 did you see the one cow huddled in the pond while the others are over on the other side of the pasture and wonder why the one cow is alone?  And furthermore, do cows have bullies and do they shun their own, like people do?  These are the types of things that if you are not going 60, you can ponder.  So getting behind the wheel again after the hiatus and having to face the driving like a bat out of hell drivers that seem to be on the roads nowadays was NOT a joyous occasion for me.  Yes, it brought me a step closer to independence but what if I didn't react quick enough to something and caused a wreck?  What if I went 40 instead of 45?  The demons of self-doubt crawled right up there on the dash of the car and chattered the whole time.  Then they had a cheerleader behind me as I was waiting to make a left turn who decided the demons needed to have a little music to help their cheer because the old man in the Dodge behind me laid on his car horn when I wasn't turning quick enough into the oncoming traffic for his liking.  Sure, I might have been able to make it, but then again, I couldn't really tell.  Doesn't hurt anything to wait an extra 45 seconds for a better opportunity, does it?  The Demons and the Dodge driver seemed to think it would.

Trying to beat the demons of self-doubt, I think I've read every single positive affirmation quote on Pinterest lately.  I have even created a few of my own and stuck them out on the ever revolving super highway of Facebook NewsFeeds.  Let me just say it is so much easier to read something than it is to believe something.  I can read the quote a million times, but deep down, God and I have the same conversation every time before I have to tackle something new or something new for the moment.  Every time He assures me that He's right there and I'm trusting that He is because inside I am shaking like a leaf and scared to death.  When you have a stroke, it not only robs you of your physical strength and ability but it robs you of mental strength and confidence.  Fortunately, I have a great team of cheerleaders that have bigger mouths than the demons of doubt do, and can make a louder noise.  I will get back to conquering the world.  Just not today.

Friday, July 11, 2014

You Are Invited....

You'd think by this point in the process that physical therapy and occupational therapy would be getting easier.  But it isn't.  It's getting harder.  Not because I'm getting weaker, but quite the contrary...because I am getting stronger and Mama, Rabbi, and Mr. Miyagi have a personal vendetta against my abilities and are upping the ante on everything, which is their jobs after all. 

Remember when I first started therapy and Mr Miyagi tested my hand strength and my left hand squeezed 10 pounds and it was supposed to squeeze around 55-60?  He retested me the other day and now I can squeeze 32 pounds.  Woo-hoo!!  Not nearly where I need to be, but it is getting there.  Babysteps.  I realized how weak my hands still were the other day when I was doing Art Therapy and attempting to use a rubber stamp.  My hands were not strong enough to press hard enough on the stamp for a clear impression. These are things that most people don't think about.  How much pressure you put on your hands, whether it is lifting a full pot of pasta from the stove (you have to have the grip strength to hold on) or opening a heavy door, we all take for granted these simple things most days.  

I know I've said it before but when a stroke patient, or at least when THIS stroke patient, left the hospital, I had no concept of boundaries and limitations.  I felt, mentally, like I could do anything that I used to be able to do pre-stroke.  You suddenly realize those limitations when you are sitting in the passenger seat of a vehicle and you've gone through a fast food drive thru and the driver hands you the sack of food, then when you get home, the driver gets out of the car, and you go to hand him the food with your left hand and you can't grip the sack of food like you used to be able to do.  Think about that.  A simple paper bag with two hamburgers and two small fries.  Too heavy to grip and hand across 4 feet.  THAT, my friends, will put you right back in your place real quick and that is where I am with my upper body, which also means that I still can't do a lot of my creations that I'm used to doing pre-stroke.

Lower body, I'm rocking it!  LOL.  That's a bit conceited, isn't it?  Really though, just 2 months ago, I had trouble walking with a walker as assistance.  I was constantly afraid to move about without help because I knew my legs were not strong enough to do it.  I felt how weak and trembly they were.  So, I would get to a spot, the sofa or kitchen table, and spend hours there because that was what felt safe.  Now, I've graduated to walking with Jack.  Back the first day of physical therapy when they did the evaluations I couldn't even stand for 5 or 10 seconds on my left leg without holding on to Mama's hand.  This week in PT I managed to stand on my left leg for a full minute and only reaching out my fingertips to balance for a few seconds part of the way through.  Babysteps.

My goal, and Mama agrees that it is a reasonable goal, is to walk a 5K for my 40th birthday (in November).  So, here's the invitation...who's with me on this one?  Anybody wanna celebrate my big 4-0 with me?  It may be cold, but it's Oklahoma so it could very easily be warm and "shorts weather".   Not sure where the 5k will be (somewhere here in the OKC area), but it's going to happen.  And when it does, there will be a major party afterwards!

Thursday, July 10, 2014

Can you be Content?

When I had the second stroke, which seems like eons ago now even though it was just 2 months ago yesterday that I came home from the hospital, I was running my business of creating things out of my home.  I had stuff scattered here and there.  The Warden, aka Tommy, quickly relegated all of that stuff to the back two bedrooms where it was meant to stay originally anyway, just so I wouldn't have it sitting in front of my face taunting me and making me feel guilty that I wasn't working on it.  It created a more peaceful feeling in our main living area of our home, I will admit.  However, I have been chomping at the bit wanting to get back to creating and each evening after he has already worked a hard day at work and taken me to therapy,  I ramble on to Tommy about things that I have thought up to work on and create. 

The other evening he and I were eating dinner and as we sat across from each other at the dinner table, him listening to me ramble about how I wanted to get better so that I could do this craft show and that craft show and going on about how I was going to build my business bigger and bigger and bigger because I was going to be even stronger.  He looked at me and said, "why?"  A simple question.  Just "Why?"  I think I was in shock for a minute from this question because I actually stopped rambling and looked at him and said, "well why not?  Isn't that what small businesses are supposed to do?  Grow bigger and bigger?"  I could tell that perhaps, without knowing it, he had been percolating the things that he said next in the back of his head.

The next thing he said (or I heard anyway, God has a way of taking some people's words and twisting them into what He needs you to hear) was, "Why can't you just be content.  Can you just be content?  We are not flashy people, we don't need extravagant things.  We are provided for with my income.  We have built our lives so that we are safe and stable and secure.  It is your job to get healthy, get strong, and enjoy creating rather than jump back into the madness of it all.  Can you just be content in what God's provided for us already rather than trying to chase the world?"  As I sat there in stunned silence, his phone rang or the doorbell rang or something broke up the moment, but every since that conversation, I have been thinking about those words and wondering....why can't we all just be content in what God's provided?

God allowed me to have two strokes.  They were not ideal, they were not wanted, but they were necessary.  I know that sounds weird, but it is the truth.  Stroke number 1, I firmly believe was to pull Tommy and I back together.  You see he was working like a crazy madman on a project at work and was pulling in 50-60 hours per week.  I was busy doing a bazillion orders, keeping up with 4 retail locations and doing every stinking show that was presented to me because for the love of Mary & Joseph I couldn't say, "no" because I thought that that was what I was supposed to do.  He was not enjoying his work and I was starting to dread creating some of my stuff because it was becoming very assembly-line, no heart attached, type of creations.  We usually ate fast food and often argued about whose turn it was to do the laundry or whatever.  The first stroke was a wake up call.  Stroke number 2 was God putting the finishing touches on the work that He had started.  I would have never known about some of the medical issues that we've discovered since the second stroke.  I would have never changed rheumatologists, even though my previous one was not ideal for my health.  And I would have never realized exactly how big of a cheerleader for me that my husband truly is.

He goes to every doctor's appointment and every therapy session and is there with positive reinforcement and affirmation every new, unsteady step I have taken.  And no matter what the therapy plan turns out looking like long term, I know, without a doubt that God has a bigger plan for both of us.  We just have to wait until tomorrow's PT session and be content in the here and now. 

Wednesday, July 9, 2014

Attacking the Black Beast....

I may be almost 40, married, and have had 2 strokes, but I'm not one day at physical therapy when a young gentleman starts working out on this beast of a machine along one wall, I took notice.  Of the machine...the guy was totally NOT my type.  It was a weird not quite stair step, not quite gazelle, cardio monster.  I wanted to tackle this thing with a vengeance.  This guy made it look easy and I was taught that anything a guy can do, a girl can do, sometimes better, so why not?  (This was the part of my brain that doesn't realize limitations doing this thinking.)

To better understand the setup at therapy, imagine a big room and then go bigger.  Along one end of the room is a ballet bar and big mirror (imagine dance studio).  In the middle was a set of parallel bars and closest to the entrance were several double wide padded raised flat surfaces about 2 feet or so off the ground.  The East wall had a chameleon-type machine that could do about a 100 different things it looked like and then there were a couple soft leather recliners and then 2 tables that mocked those found in a nail shop to give manicures.  Along the west wall was a row of machines that were hybrids of versions found at the local YMCA.  Around the stuff in the center is a clear path that made a track (this is where we practiced walking). 

On my first day of therapy I had marveled and wondered at all of the equipment and gadgets, wondering how on earth I'd ever get to the point of using this one or that one, or if I would be able to use them.  But the more time I spent here, the more I wanted to tackle each one with diligence and purpose and conquer it.  So, when I had enough focus about me to notice the guy on the cardio monster machine, I knew that I really wanted to try it.  It was near the end of PT and Mama and Rabbi concurred that they wanted to see if I could handle this machine as well. 

They helped me up on the steps and I grabbed ahold of the handlebars for dear life.  This thing swayed and I wasn't expecting that, but soon got used to it.  Mama set the settings to super duper sissy easy and told me to start moving my legs and walking.  The face of this machine lit up and there were more lights on it to look at than DFW's landing strip at night.  (I know because when I was a toddler, I wouldn't go to sleep until my dad would take me to the airport to see the planes each night.)  I started moving.  Slowly at first and then a steady rhythm of pseudo-walking.  Only there were problems we soon found.

My heart couldn't handle it.  Before I had hit the 2 minute mark, my heart rate had soared to more than 150 beats a minute.  Mama and Rabbi quickly shut the machine down and helped me off of it.  Tommy made note of the time because we were sure that my heart monitor that had been implanted would be sending some kind of signals or recording or something to the powers that be to let them know that I suddenly had a spike.  It was then decided that my heart desperately needed more work. 

This could definitely account for the constant fatigue I felt after doing minimal work and this was not going to be an okay future if we weren't able to conquer this beast.  And moreover, I wanted to get back on the cardio monster and show it I was the boss.  Mama assured me that in due time I would be allowed back on it, but not any time soon. 

I left therapy feeling pretty defeated, but I also left Mama and Rabbi drawing up a new plan of attack for my therapy.  This would be super interesting to see what they came up with for me the next time I was there because we all agreed rehab ain't for sissies.

Tuesday, July 8, 2014

Becoming a Hermit....

I realized today that I am actually enjoying my jaunts to therapy.  Not because I just love a grueling two hour sweaty workout (don't laugh, it is grueling if you have had a stroke), but because I've noticed that I'm becoming a bit of a hermit...and I like it, kinda.  It's true that I have worked by myself for the past 4.5 years, but I was always out and about throughout the day.  Either purchasing supplies, or restocking a booth, or making customer deliveries.  Even though I worked alone, I was constantly with people.  Heck, some days the postman and I would just stand at the curb and chitchat for 20 minutes.  Or I'd drive over to Circle K to the post office outlet there and get a Dr. Pepper, mail a package and spend half an hour talking to the girls that worked there, catching up on their kids and what have you.  Post-stroke, I have been to doctor's appointments and therapy and a few other places, much to my detriment.

About a week after I came home from the hospital, I had been flipping through the Sunday newspaper and saw something that I wanted that was on sale in the Michael's ad.  I begged Tommy to please take me there to get it.  He said we could go the next day.  So, the next day he loaded Charlie (who I was still relying on) and I up in the car and off to Michael's we went.  A little background perhaps is called for here.  Pre-stroke (PS for now) I could spend an hour in Michaels easily roaming the aisles and taking in all of the colors and gathering inspiration from a mod podge of random items.  I was so looking forward to this field trip.  My brain needed a burst of color and creativity.  It started pouring rain the minute we got in the car.  I should have known that this trip was doomed. 

Tommy got to the store and pulled up as close as he possibly could without actually jumping the curb.  He got Charlie out and set up under the overhang on the sidewalk and then assisted me to Charlie giving me orders to stay right there while he went and parked the car.  So, I stood on the sidewalk with my walker, looking like a lost homeless person just staring out into the rain until he was able to puddle jump his way back to my side.  Then, we meandered into the store, after spending a long minute making sure the bottoms of my shoes were dry and that Charlie was dry.  I will say that Tommy has been excellent on keeping me safe during this whole event, and for that I'm so extremely grateful and blessed. 

The store had been rearranged and moved around since I was there last so I wasn't sure where the item would be located that I was looking for.  But Tommy assured me that we would find it.  He grabbed a shopping basket and we started looking. It wasn't where I thought it would be and wouldn't you know we couldn't find a sales assistant to save the day.  So, we looked in the second place I thought it would be.  By this time (only about 5 minutes into the store), I realized I was in trouble.  My head was swarming with activity (and not in a good way) and I was starting to feel overwhelmed.  There was too much going on.  I couldn't focus.  We finally found a sales person who told us that this store didn't carry that particular item, perhaps another store did and we left.  30 minutes in that store gave me a migraine the rest of the day and exhausted me beyond belief.  Sadly, at that point, I realized the depths of damage done to my brain and that this would be no quick recovery. 

So since then, I've pretty much hung out at the house.  We've made a few little trips to the pharmacy or to Braums but nothing as extensive as the Michaels trip.  And this is why my trips to therapy are becoming more and more precious to me.  It's a chance to interact with people.  Socialize.  Share the victories.  Sure I can post on Facebook that such and such happened today but thanks to the crazy algorithms that facebook is playing around with, maybe 2 people will see it, maybe 200.  Ya never know.  And besides there is just something awesome about physically seeing the smiling, truly happy for me, face of Mama and Rabbi and the rest of the crew that makes every little accomplishment so much better.  I also like the fact that they are human too and not afraid to show that side of them.  For instance, Mama tells us about how many times her new baby woke up and how her husband didn't take his turn in getting up, but in his defense he was super tired from a long day at work ...and Rabbi shares about his neighbor with the perfectly micromanaged front yard that expects the same from the other dwellers around him.  Just little everyday stories that make me look forward to seeing them. 

What I wasn't looking forward to seeing though, was The Arc Trainer.  It had been sitting like a black shadow in the corner of the room since day one and I would faceoff with it on my next visit I was warned. 

Monday, July 7, 2014

The Wonderful Wizard of Oz, maybe....

Dr. M had mentioned that I might consider switching to a new rheumatologist the first time we saw her after the second stroke.  She gave no reason, just a suggestion.  A strong suggestion.  Tommy and I discussed it and weren't really sure that we wanted to introduce a new party into the mix, but I had been seeing the old rheumy for 19 years and was kind of in a stalemate so we figured what could it hurt to get a new set of eyes on my charts and history. 

Again, for the past 19 years I have trusted Dr. B with my aches and pains.  He's seen me through the disintegration of my left ankle and the fusion and recovery from that.  He, or rather, his staff, has guided me through the plethora of arthritis medications and side effects.  After my stroke last year, we contacted his office to find out if he thought that it could be related to any of my medication or anything and I was quickly told that there was no way it was related and to "keep on keeping on".  So I kept on keeping on.  This year after the second stroke, Tommy, while I was still in the hospital, contacted their office and let them know what was going on and he was told to continue with my medication when I was released from the hospital.  They didn't seemed to see a relevance or relation. 

The first thing after Dr. M made the referral we got a call from the new office letting us know that we wouldn't be able to get in to see Oz because he was no longer taking new patients.  What on earth?  Why would Dr. M refer us to somebody that wasn't taking new patients!?!  But, the receptionist that made the call to us told me that I could get in to see one of his counterparts, but it would be September to see one of them and October for the other one...(like that was any comfort?  I couldn't see who I wanted and the second string was so far behind it wouldn't really matter I thought) OR the receptionist told me, I could see Oz's nurse practitioner.  I had no clue what a nurse practitioner (thought it sounded like a beginning level RN just out of school...after all, what are they practicing?) was so I called Dr. M's office back to make sure that was what she wanted.  I was told it'd be fine, so yet another phone call was made and before long I had an appointment with the NP. 

Tommy wasn't so sure about seeing NP either.  He said he'd reserve judgment until after the appointment but he wasn't holding his breath that this was a good idea to be switching.  I reminded him what my grandmother used to say about holding one's shouldn't do it, because blue is NOT your color.  I called Dr. B's office to get copies of my medical records the week before we were to see NP.  I just told Dr B's nurse that my primary care physician wanted to see the records so that we could go over them and see if there were any patterns or medication changes that might be indicative of something causing these strokes (didn't want to say at this point that we were switching because if we didn't like the practice nurse, we weren't staying).  The nurse asked me if I wanted all of the records or just the past 2 years.  I asked for all of the records and assured her that we would pay for any copying or duplication costs that were incurred.  It was a Monday.  I was told Tommy could go by on Wednesday to pick them up. 

Wednesday came and Tommy ran by Dr. B's office on his way home from work before PT to pick up the records.  When he got home to pick me up for PT he handed me a regular sized envelope with my name on the front of it.  I asked him what it was and he said, "your medical records from Dr. B".  I thought he was joking.  I had seen the man for 19 years.  How could it all fit in this regular mailing size envelope like the gas bill comes in?  I opened it up and inside were 4 pages.  Yep, my entire 19 years of medical records I had requested amounted to 4 pages obviously in their world.  It went back to 2012. 

Now, keep in mind, this is now 2014.  I will be 40 years old in November.  According to the paperwork in this envelope in October 2012 (which was NOT the first time I saw not sure what happened to the first 17 years), I was 34 years old and had had my right ankle replaced 3 years prior (or some craziness like that).  I went on to read the next page.  It said in 2013 I was 38.5 years old (I age quickly obviously) and had a left hip replacement or some other ludicrousness! Needless to say, none of the 4 pages was of any relevance since it seemed to be filled with erroneous data.  I was angry and grateful all at the same time.  Grateful that Dr. M had suggested we make the move and angry that my medical history was not documented better by a professional that I had trusted. 

The day arrives that we are to go see NP and I truly had no idea what to expect.  I didn't know what a nurse practitioner was and I didn't know anything about this new clinic (other than it was a lot closer to home than the old place) and I just wanted answers.  As we sat in the little exam room waiting to meet NP, we heard voices outside the door.  We could tell that it was a man and woman and they were discussing my medical history (that they had received from Dr. M).  Then, in comes NP. 

She was a short blonde woman and very naturally pretty but had the look about her that she was taking no crap off of anybody (later found out she had been a military nurse).  She spoke with Tommy and I at great length and then asked if we had brought our xrays from Dr. B's.  I had never had xrays done at Dr. Bs.  When my ankle joints disintegrated, he had sent me to a specialist and they had done those xrays but Dr B's office had never done any.  NP sighed deeply.  Couldn't tell if it was exasperation or amusement.  She said, "Well here, we xray your entire body once a year so that we can progress any disintegration of joints." Made sense, I suppose. 

Then, she asked about medications.  I had previously been on a medication that was given intravenously (like chemo) once a month.  However, the only good vein that they could find was on the top of my left hand.  After going to that vein for so many months (every month for more than 2 years), it just became too scarred and weak and we had to quit taking that medication that way, even though it worked really well.  I was relegated to weekly injections of a lesser version of the drug that was effective but not to the extent that the IV version was.  We had asked Dr B and his staff many times about inserting a port so I could continue with the good medication and he insisted that they get infected too easily and it was too dangerous.  NP excused herself from the room for a few minutes after hearing this.  Tommy and I weren't really sure where she had gone or what was going on, but we just hung out in the exam room. 

Within a couple minutes, the door flies open again and this older, white headed man that resembles the Wizard in one of my favorite movies of all time, "The Wizard of Oz" came into the room.  He was loud and robust and very confident in his presentation.  He introduced himself as Oz (the same guy that was not taking any new patients!) and told us that he had been reading up on my case and he personally wanted to introduce himself to us and talk to us about everything that had been going on.  Tommy and I exchanged looks of half-excitement, half-bewilderment.  What on earth could be in my chart that caused this man to come in to THIS case?  Whatever it was, we were grateful to be seeing the actual doctor, no offense to NP, but being new here, it just felt a little better. 

He went over much of the same questioning that NP had already covered.  When he got to the question about the previous IV medication and why I was no longer taking it and we told him about the bad vein and the port issues, he said, "nonsense!  They only get infected if people don't know what they are doing.  We've had people have them in for 10 plus years without a problem."  He also asked about the 2 strokes that had occurred in such a short period of time.  We affirmed that that was correct and that nobody seemed to know why they were happening because all the tests had been turning up negative or without cause.  He, very matter of factly, almost like the 5 year old that comes running into the room in his superman under-roos and announces he is going to save the world, said, "I will tell you why you are having multiple strokes at such a young age."  Then he took out his prescription pad and wrote a word that had more letters in it than any words I had ever seen.  He ripped the top page off of the pad and handed one copy to me and one to Tommy.  He said, "we are going to test for that, but I guarantee you, even if the tests come back negative, you have all of the signs of this and THAT, my dear, is what we are going to treat."  I was still trying to pronounce the words when Oz disappeared out of the room. 

NP told Tommy that he could wait in the waiting room because they were going to take me back to the lab and the xray area to start testing.  He was ushered out of the room just as quickly as Oz had left.  An older woman (LH) came and fetched me for the labs.  We trapsed across what felt like a mile long rambling corridor and finally got to this area that was pretty nice.  It had at least a dozen super luxurious recliners in it and a couple large flat screen tvs mounted up on the wall.  I was told that this is the lab area and also where they give the IV medications.  Much nicer than Dr. B's setup had been.  We had practically been stuck in a chair in a coat closet there with one little tv to share. 

I dread any time that I have to have lab work done.  Does not matter how much water I drink or what I do beforehand to try to prepare, my veins just never want to cooperate.  I asked how much they'd need to get and they told me that they had to have 11 vials of blood.  Not the most that had been drawn at a single time before but still quite a bit.  I told LH that usually they could only get the top of my left hand because the other veins rolled and blew too easily and that she'd have to warm the hand up before she tried to get the vein to pop up to easily manipulate it.  She was perfect.  She got all 11 vials out of that vein with no issues.  While I was sitting there Donna, the head nurse, came and looked over my arms and gave me the good once over to figure out where they might have the best shot of introducing the IV.  She found a few viable options and then made notes.  That would not start today. 

Finally I was trotted, as best as I could trot with Jack, down another series of hallways to the Xray facility.  I was given a lovely pair of navy paper shorts because my pants I had on had a metal zipper (I hear that they are all the rage this summer).  I can honestly say, I have never ever been xrayed so much in my entire life.  Stand this way, turn that way, squat like a duck, turn around, hold your jaw, lower your arm.  I felt like it was a weird version of Twister.  One particular part of my body required 8 different angles and views.  And then it was announced that all the fun and games were over and I could leave.  I was escorted back to the lobby where Tommy had started to think that I had disappeared into the abyss back there (it had been the better part of 2 hours since he had been sent to wait in the lobby).  We were given an appointment for the following week to come back and they would discuss all the results from today's tests and we would determine how to move forward.  I didn't know if I should feel relieved or panicked.  In one week we might have the answer to all of the strokes, but then again, we might not.  In the meantime, I needed to see Mama and Rabbi and LittleBit for some cheering up.

Thursday, July 3, 2014

Teeter Totters will never be the same

I absolutely love my therapists and doctors.  I know I've said that before, but this group of folks all working together to make my world complete again are just beyond remarkable (and its a good remarkable).  I'm also convinced that after having a stroke, you pretty much revert back to preschool and kindergarten days in some ways because everything has to be very basic.  Today at therapy is no different. 

Some of you will remember the little plastic turtles that we rode in the gym in kindergarten.  We had to maneuver our butt and our feet and hold onto the handlebars to get them to wiggle us across the room.  We would fly across that gym floor like little maniacs laughing our silly heads off.  We have something similar at PT.  We have scooter races.  Only these are on black stools.  Usually it is a patient racing against one of the therapist in a big lap around the room.  As silly as it sounds, it truly does work your legs.  My hamstring on my left side is not quite strong enough to the point that I can successfully beat Rabbi at this game (without cheating), but it's getting there.  I at least mostly finish the lap around without hitting too many things.  But we do laugh our silly heads off. 

I was also introduced to this thing called the SportKat today.  Imagine, if you will, a huge beach ball.  Then, cut the ball in half and stick a thick plastic board straight across the middle.  So you are looking at a half circle with a lid on it.  This thing is able to have the tension released or added by the push of a button.  Mama and Rabbi put me between the parallel bars again (for safety) and set the SportKat in the center in front of me.  I had to step on the top of it and get my balance.  Then they adjusted the tension accordingly.  It reminded me of when we were younger and even though we were told NOT to do it, we would stand in the middle of the teeter totter and try to even it out and balance.  THIS is very similar.  Once I had my balance and was pretty confident in standing there, Mama and Rabbi added a twist.  They started throwing a ball at me.  What the stink?  I'm barely standing on this crazy, moving board and now you want me to catch a ball and throw it back to you?!?!  We were playing a goofy version of catch.  Starting out it was a simple, straight forward toss to me and I'd toss it right back.  Then they decided to up the ante a bit and they started throwing it further left and further right.  It was all in the name of gaining balance and working reflexes but goodness it sure does give you a cardio workout as well.  Who knew that a dollar tree ball and a teeter totter could be so intense?

I think it's fair to say at this point that mine and the Warden's routines are starting to take shape and becoming more solidified. I am able to stay on my own throughout the day (not like I can go anywhere anyway since I can't drive) but I have to text him every hour to check in.  I forget sometimes and he immediately calls me, so I have to set my alarm on my phone to go off every hour so I remember.  I don't want him to send in the calvary because he thinks something horrible has happened, when in reality I'm just busy playing Pet Rescue Saga on Facebook and got sidetracked or fell asleep reading a book. 

Speaking of Facebook games...I know that most people find them horrible wastes of time (and they are), but I've found that surprising they truly are great for people that have had a stroke (or two) because it is causing me to problem solve and focus and think about these things (I realized the first few days that not only do you have to match up jewels of a certain color, but you have to match up ENOUGH of them to get the game to proceed).  So I apologize now if I have accidentally inundated anybody with game requests that didn't want them.  I'm just working on my cognitive thinking skills.

Tomorrow I have to visit a new rheumatologist and I'm a little unsure of all of that.  I have had the same one for 19 years but he is moving more into the research arena and so is tapering off from his patients and Dr. M thinks its just as good a time as any to do a switch and get a fresh pair of eyes on my medical issues.  So, here goes nothing....

Wednesday, July 2, 2014

Black Jack meets Epcot

Up to this point I have been using my handy dandy walker, Charlie, to get around.  And when I am at PT, I have Rabbi on a leash making sure I don't fall.  I've never really been afraid of falling before the stroke.  I am very afraid of falling now.  It's a weird mindshift that happens when you realize that you COULD fall, quite easily.  The Warden has threatened me with a Life Alert attachment.  Sadly, several of my physicians have agreed that it is probably a good investment since I am alone throughout the day when I work.  I've already been trying to figure out how to make it look better.  If one of these clunky attachments claims me as its new owner I'm gonna have to bedazzle the thing or something because for the love of Mary & Joseph I hate the thought of wearing a garage door opener around my neck straight out of the box. 

Charlie and I get along just fine.  Shadow has taken a liking to him and often kisses him and doesn't scamper away anymore when she sees Charlie escorting me across the floor.  So, you can imagine my surprise when Mama brings out Charlie's counterpart at PT the next day.  In comes Jack.  Jack is a quad cane, the kind of cane that has the  four feet on the bottom.  Going from being encased by the circle of safety that was Charlie to relying on Jack for balance and some support was a HUGE leap.  It's like trying to get Woody to put on Buzz's costume and fly to Infinity and Beyond.  I will admit it was nice to finally "graduate" away from Charlie, but it was cause for some anxiety since I had not, to this point, walked without Charlie or the assistance of another person in well over a month.  My grandmother had a Jack (but she called hers Charlie...follow that twisted line of naming, lol).  Hers was gray.  My Jack is Black.  It makes me laugh when I say that or think of it.  I have a BLACK JACK!  Take me to a casino, I'm ready.  But as we all know, canes are boring.  They really are.  So I really wanted to Wagsify Jack. I dressed Jack up in leopard print.  A very fancy gray and black leopard print.  Very slimming.  Little Bit and Mama thinks it is funny.  I think it is at least different than every other cane being used. 

One of the nice things about Jack is that I can carry small, light items, in my left hand when I am walking from one point to another. With Charlie, I was learning to wear clothes with big pockets, or tuck things in my waist band of my shorts, or however I could manage to get around best.  Jack has allowed me a bit more freedom in this sense.  And most importantly, he has allowed me to get drinks on my own.  I still have my 28 ounce plastic mug from McGruff that I'm dutifully visiting on a daily basis ( however, I still hear her voice in the back of my head saying, "you're not drinking enough water!") but I also have managed to drink one Dr. Pepper (with good ice) in my Epcot mug each day. 

Let me explain something about Epcot.  My parents took my siblings and I to Walt Disney World in 1995.  It was their "vacation of a lifetime" to us.  The five of us taking on Disney.  I was in college and living on my own at the time but came back home for the trip.  When we were there, I purchased a souvenir.  A 22 ounce plastic mug with Mickey and the Epcot Flags of the World on both sides.  I refer to it as Epcot when I'm rifling like a crazy woman through the dishwasher trying to find it, or in the cabinet.  I drink out of it almost every day.  It is comfortable.   I know exactly where to fill up the ice to make it the perfect mix of ice and drink.  I've even trained Tommy where to fill the ice up to.  So, Epcot is my security blanket of sorts. Now back on track...Jack gives me the freedom to move around without having to totally rely on somebody else to bring everything to me, just MOST things.  So now that I have Jack, I feel like I should be able to conquer the world.  Did I mention that my ability to sense boundaries and limits is skewed still? 

My typical day at this point in the process looks something like this.  I manage to wrangle myself out of bed and to the kitchen table where I go through my morning ritual of taking blood pressure (I think our machine is possessed, by the way), recording it, downing the first batch of medication, and then making any phone calls (refill prescriptions, verify doctor's appointments, and the like) or doing any mailings that I need to do (bills, letters, cards, etc...).  These usually take me a good couple hours, if not longer.  Remember everything takes me so much longer.  By then I need to start thinking about getting ready for therapy in the afternoon.  Throw in a couple minutes to read a few pages in a book and that's my day.  Its a far cry from my typical day just 2 months ago and this is what makes me anxious to get back full force.  Nowadays I don't feel like I'm doing anything (in reality I'm doing a 2 hour workout every afternoon at therapy that I wasn't previously doing) and that I'm just letting time slip by that could be used on something productive....anything productive.  Again, in retrospect I see the skewed sense of things as I sit here but when I'm actually in the moment, it seems like nothing. 

Rehab tomorrow should be fun.  We're doing higher hurdles and something called the SportKat.  Not sure what it is, but it sounds interesting. 

Tuesday, July 1, 2014

A walk (or Bungee ride) on the Dark Side

A couple things that have to be told at this point, because as much as I love trying to keep a lighter side of things, after having 2 strokes in such a short timeframe, it sometimes has to be a little serious.  Number one, I feel like I'm falling into a depression of sorts and I don't know how to get out of it.  I have little motivation to read, play with Shadow or pretty much any of the things that I had been doing on a regular basis.  I am not sleeping well so I'm constantly tired.  My brain has started running in overdrive all the waking time again and even attempting to read or do a singular activity is not calming it down.  I'm attempting to create things but I get angry (which is truly the only word that I can think of to properly fit the feeling) when I can't do everything to the project that I want to do or could used to do and it takes me much much longer than ever before to do the simplest of tasks. 

Number two, I am scared most of the time.  I know, hard to believe that I'm afraid or scared of anything, but at this point, I am.  I am afraid of having a third stroke, especially since they don't know what is causing them.  I'm afraid if I was to have a third stroke that it would be even worse than this one.  I'm afraid that all the kinks in my body and brain wont get worked out completely so I wont ever return back to the person that I was (or a resemblance of that person). I am afraid that my business is taking a fatal blow that it will not be able to rebound from after having been closed for so long.  I know that all of these things are crazy to be afraid of, but it's what is in my heart.  I am trying each day to thank God for the day and the small victories (because there are truly a lot of those) and trust that He will take care of everything and make me into what the new me is supposed to be.  But lets face it.  How many of us, especially women, have handed stuff to God first thing in the morning and then by noon said, "Ya know what God, I'm just gonna take this one little thing out of your inbox because I see how busy you are and I will just deal with it so you don't have to."  I've caught myself doing this on a regular basis.  I need to quit doing it, but its so hard. 

My super awesome Warden husband has taken the brunt of all of this and kept on smiling.  For that I feel horrible.  He shouldn't have to deal with all of this too.  He has so much on his plate already that dealing with my crappy attitude and insecurities should not have to be a focus of his right now. 

And then there is always PT and Speech Therapy....

I saw Ace again a few days later.   The first activity she had me do was look at a piece of paper, like a quiz or worksheet that an elementary child would be given, maybe 3rd or 4th grade.  There were about 20 to 25 lines on it.   A descriptive phrase was written on the left side of the paper and then on the right side of the paper was a fill in the blank.  But all of the blanks had two letters already filled in. The answers all had the letters I and T in it somewhere.  I should be able to cruise through this I thought.  Examples were things like, "an inhabitant of Italy" and the fill in had an I T and then 5 blank lines so I could spell out Italian.  I was okay for most of them and got them relatively quickly.  Except 2 or 3.  One of them, I could not for the life of me figure out and it was making me angry looking at the paper.  It was "a worthy quality; virtue" with blanks of  __  ___ ___ I  T.  I was lost.  Not a clue.  The second one that I kept looking at over and over again...and even read out loud (which is where I realized my big mistake was) said this, "a garment worn on the hand" with blanks of ___  I  T  ___  ___  ____.  But when I read it, 5 or 6 times, mind you, I read it as "a garment worn on the head".  And that's how I read it out loud.  For whatever reason I could not figure it out.  I was thinking of hats, scarves, trying to figure out if a foreign hat of some kind was called something with an I and T in it.  Then Ace asked me to read it to her again, slowly.  That's when we all realized I was exchanging the word head for hand.  Not sure why my brain did that flipflop.  I got the answer immediately after I realized the mistaken word.  Man, that made me feel dumb.  I kept asking myself (in my head) how on earth I could have gotten those two words mixed up.  I mean, I KNOW the difference in the words.  I can spell.  Why do strokes cause things like that? 

Then because my Mastiff characteristics still had not totally subsided and I was like a teething toddler, Ace showed the Warden and I some exercises to do with my cheeks and mouth to help strengthen the area so it could regain strength and muscle and full use.  I felt like a perverted version of Jim Carey's Pet Detective.  Just put the mask on me and watch my face twitch and twist!  I've never had so many tongue depressers/wooden sticks in my mouth in a single day.  Now, if they only had popsicles on the other end, I would have been a much happier patient (and messier because I can only imagine the mess I would have made with them).

After working with Ace, it was off to see Mama and the Rabbi.  I had been regularly walking the Rabbi and moving the Duck around the room.  I had gotten proficient at the ladder and a small version of foursquare (reminded me of square dancing in the fifth grade) and the hurdles.  Today, though, they had a new task for me.  The Bungee.  Imagine if you will, a big 4 inch thick heavily padded belt wrapped around your waist.  Then, realize that it is hooked to an industrial strength bungee cord that weighs several pounds and is hooked to an 8 foot long board with eye hooks coming out of the wall.  The goal: to walk as far forward as you can possibly go in a controlled manner and once you are there, slowly walk backwards in a controlled manner.  The walking forward part is easy to a point and then when you start feeling the resistance it becomes harder and harder.  Mama told me to keep going until I couldn't possibly go any further.  I pulled the bungee probably about 20 feet from the wall, give or take.  The backwards part...not so easy.  Because by the time I had so much tension in the bungee, if I was to let it, it would have immediately pulled me backwards and flat on my butt.  This was so much harder than it looked.  The Warden commented on how it looked fun.  I asked Mama if Tommy could try it out.  He had been a good sport to this point and was willing to try all of the tasks that I was given so that he'd understand at least a small portion of what I was doing.  The Rabbi hooked him up to the bungee when I was done and he was off.  He thought the going forward was harder than the going backward.  I guess the Bungee was a good stopping point for the day because it was a perfect analogy to keep going forward and fight the urge to be thrown backwards.  But I was getting ready to travel a million light years away from where I was, I just didn't know it yet.