So Much For That

Great news for me today!  A visiting nurse (Bonnie) just left my house after teaching me to use the new Avonex Pen auto-injector.  Who knew giving myself an injection would be this easy!   Just as I got used to giving myself the injection with the 21G  1  1/2″ long needle I am able and trained to now use the auto-injector with the 25G 1″ needle!!!   This is groundbreaking news for Avonex users because the Pens have only been on the retail market for 3 months!!

Yep, that’s right–My immune system picked the best time in pharmaceutical technological advancement to attack my brain and spinal cord.  I feel like the luckiest girl in the world.  Much different from the time I was told—during the week of diagnosis—that it was the worst possible time of year for MS’ers with the fast approaching scorching hot Virginia summer looming and all.  Yep, the sun’s heat does do a number on my head, general well-being, and  causes some more temporary blindness, but  heck, nothing compares to the excitement of being able to use the Pen to inject chemicals in my body.

Recall, You Never Know When it Will Arrive

Okay, so, try to figure this out.  Here, look at my posts a few days earlier from today.  This is what I mean.  I obviously had zero recollection that posted practically the same thing twice.  I hate that this happens to me.  It was not always this way.  I swear.  Okay, I don’t swear about anything, but this recall thing is a hindrance, and it happens randomly.  Usually in front of someone who may walk away thinking I am a moron.  Or, am I?

Impossible to Recall

There are moments of forgetfulness.  Where did I put my keys?  Has anyone seen my phone?  Right.  We all have those.  But there are different levels of this kind of stuff that I was not aware of.  Let me back up to six months ago.  While mid-sentence I got stuck on words.  It’s not that I forgot what I wanted to say, it’s more like not being able to remember the words.  It could be the name of a thing, a concept, a noun, or a verb.  The word or name for whatever it is usually called is absent from my mind.

Where did the words go? Did they slip through one of them there so-called lesions on my brain?  That day.  The day the doc showed us some pictures of someone’s brain.  It was like that commercial.  Remember the one?  This is your brain.  This is your brain on drugs.  And you could laugh cause it was nothing but a hot skillet with a couple of eggs frying on it.  Yep.  Just like that.  All those words spewing from the doctor’s mouth could not possibly apply to me.  Maybe she recognized  that my husband was more interested in what she had to say than I was, but she never really made good eye contact with me.  So, for sure, it was just a generic brain MRI power point to show us that it was a great photo shoot, she knows all her parts of the brain cause she studied hard in medical school, and all looks just swell.

Not since I was a kid had I been spoken of in the third party at a medical appointment.  What the hell was this woman saying?  I glared over, and saw how my husband was hanging on her every word.  Glad he was there.  Somebody had to take note of whatever instructions she was rattling off.  All I knew was that her personality left a lot to be desired.  I saw one slide pass by real quick and I immediately spoke up.  Big white spot.  Big black spot.  What was that a picture of?  What, this is the part of my brain which is responsible for processing?  Can’t be.  Can be.  What does processing mean?  Is that why I can’t do math?  Sort of.  Would that be the reason for my loss of words, or why it’s impossible to recall some recent important conversations and decisions that I have apparently been apart of but again, have no recollection of?

A week earlier I was at my nephew’s graduation celebration.  I was standing in front of the coolers on the patio.  Just staring.  And staring.  Smiling cause I’m at a party and I can’t let on that I don’t know why I’m standing there.  Oh, right.  My sister asked me to see if they had a very light beer.  Got it and a San Pell for myself.  I sat down and as I was peeling the label off of the lid of the can, it dawned on me that something really bad had just happened.  Maybe I was having the stroke I had been fearing for the past six months every time I felt a warm creeping along the side of my head.

 

Trepidations and Tremors

A silent, slow, hum— a vibration caused by the rush of blood running through my body is always with me.  Starting in my fingertips, I feel the blood rushing through my veins straight from there up my arms, across my forehead, behind my ears, through my hips and down my legs through my feet and then back up again.  It never stops.  Looking down at my hands, I sometimes see the tremolos sending signals to the part of my brain responsible for focusing on the inevitable.  Not an anxiety, but a reality.  For just about 2 years, the vibration combined with the occasional tremor has me certain that I am the lucky girl to inherit my father’s Parkinsonian ways.  If it happens in my ankles and lower calves too, does that mean I’ve got it?  If it were carpal tunnel syndrome, I probably would not be feeling the blood vibration in my feet and legs too, huh?

After the Dx (that’s how it’s written in the doctor’s notes), still in disbelief, I was able to speak up, which was probably at the third appointment with the neurologist, whose personality was just starting to grow on me, I told her about the vibration.  I described it as ‘that feeling you get in your hand when you touch a stereo speaker (1980’s sized) which is projecting loud music’.  She giggled.  The doctor giggled.  I saw a sign of her actually being a human and not just a fact spouter.  However, I had nothing to giggle about.  Oh, yeah, ‘it always amazes me when my MS patients talk about the vibrations in their limbs–everyone describes it differently’.  I backed up a bit, and told her it was more like being able to feel the blood rushing past the walls of my veins.  She gave me a half-smile and told me that she had never heard it described that way before and it was probably right on target.  Great.  She commended me for my excellent description of an extremely annoying vibration in my body.

Could I have MS because my father has Parkinson’s?  No.  Doc says she’s not too worried about that and she is 100% confident with her Dx and that she is 90% sure I will get another (choose one:) flare, exacerbation, attack, episode, crisis, occurrence, bout, and/or anything else you can think of.  Tells me my kids have a much greater chance (no odds given here) of getting Parkinson’s and that they only have a 2% to 5% chance of  having MS.  Whew!  I was worried there for a moment.  After hearing that, I feel so much more at ease now knowing how protected my children are.  After that feeling, she asked which medication I decided on.

Her description of the medication: “Well, that’s just the thing…we don’t really know how it works, but it just does, so we use it.”  The husband and I got a great laugh about that line when we got in the car.

Recall Impossible

There are moments of forgetfulness.  Where did I put my keys?  Has anyone seen my phone?  Right.  We all have those.  But there are different levels of this kind of stuff that I was not aware of.  Let me back up to six months ago.  While mid-sentence I got stuck on words.  It’s not that I forgot what I wanted to say, it’s more like not being able to remember the words.  It could be the name of a thing, a concept, a noun, or a verb.  The word or name for whatever it is usually called is absent from my mind.

Where did the words go? Did they slip through one of them there so-called lesions on my brain?  That day.  The day the doc showed us some pictures of someone’s brain.  It was like that commercial.  Remember the one?  This is your brain.  This is your brain on drugs.  And you could laugh cause it was nothing but a hot skillet with a couple of eggs frying on it.  Yep.  Just like that.  All those words spewing from the doctor’s mouth could not possibly apply to me.  Maybe she recognized  that my husband was more interested in what she had to say than I was, but she never really made good eye contact with me.  So, for sure, it was just a generic brain MRI power point to show us that it was a great photo shoot, she knows all her parts of the brain cause she studied hard in medical school, and all looks just swell.

Not since I was a kid have I been spoken of in the third-party at a medical appointment.  What the hell was this woman saying to him?   I glared over, and saw how my husband was hanging on her every word.  Glad he was there.  Somebody had to take note of whatever instructions she was rattling off.  All I knew was that her personality left a lot to be desired and she was talking mumbo jumbo and I wish it would all just STOP.  I saw one slide pass by real quick and I immediately spoke up.  Big white spot.  Big black spot.  What was that a picture of?  What, this is the part of my brain which is responsible for processing?  Can’t be.  Can be.  What does processing mean?  Is that why I can’t do math?  Sort of.  Would that be the reason for my loss of words, or why it’s impossible to recall some recent important conversations and decisions that I have apparently been apart of but again, have no recollection of?  Maybe.  Hard to say.  Everyone’s different.

A week earlier I was at my nephew’s graduation celebration.  I was standing in front of the coolers on the patio.  Just staring.  And staring.  Smiling cause I’m at a party and I can’t let on that I don’t know why I’m standing there.  Scroll through the alphabet.  A, no, not looking for an apple.  D, duh.  F, fuck this is serious forgetfulness.   There are drinks in the coolers.  Maybe I thought I was thirsty before I got out here.  Oh, right.  S, my sister asked me to see if they had a very light beer.  Got it and a San Pell for myself.  I sat down and as I was peeling the label off of the lid of the can, it dawned on me that something really bad had just happened.  Maybe I was having the stroke I had been fearing for the past six months every time I felt that warm creeping feeling along the side of my head.  I knew something was causing it. It must be the phantom upcoming stroke which caused weird shooting hot pains from the top of my eye along the top of my scalp down to the back of my neck.  The one that made me take an aspirin every night before bed because I was sure every night it would save my life while I was sleeping.  Swallowing the aspirin had me visualizing those big sticky blood cells rounding the corners real fast and smooth rather than getting stuck somewhere and clogging up my brain.

Different levels of forgetfulness.  Difficult to find the words to speak.  Befuddled.  Lost in conversation.  Lost.  Lost.  Having the voice, the vision, ability to hear and feel and smell, but not having the words to describe any of it.  Yep, a different level alright.

 

Processing The Set Up

Seriously, I’ve been told I have some processing issues, and I’m not talking about my computer, which is why the creation of a blog is so important to me.  So, after the three weeks spent periodically daydreaming about the possibility of creating my very own blog, I decided to actually do it.  Little did I know about the process.  I read blog after blog about blogs, viewed countless low-rent (not that I consider myself high-rent; high maintenance, maybe) how-tos on YouTube, I jumped in.  2 weeks later…and I’m not sure even sure if this first entry will even publish or the darn blog is set up correctly.

So, if you have not already, read the “About” to learn a bit a bout a big new-to-me ability.  No, it’s not the part where I imply that I hoard fabric, or that my kids are Army brats.  It’s the other thing.  An elephant in the room-sized thing.  The thing I have not even wanted to share with myself let alone anyone else but realized I had no choice when I went to a work party with my husband and felt like everyone was staring at me sort of situation.  Keeping silent about me, a few people that night were even decent enough break the ice about it for me to tell me husband had filled them in, so I thanked them for their concern.  I believe they are genuinely concerned and I’m grateful, so  I laughed at it to myself as I have a great sense of humor, but even the next morning was not sure if any more of the world should know.

I do not want this darn thing to define me.  Within our household it certainly has consumed us, but step outside the front door and the facade takes front and center!  Aside from always longing to be tall and slender and have much smaller than size ten feet, this is the biggest secret I have ever kept other than our personal finances, etc.  Ever.  Well, there was another one.  For years no one but my sisters, me, my dad and my mom’s sister and her periodontist knew that my mom had dentures, but that somehow was inadvertently disclosed when my father demanded, in a kitchen full of people, to be told right then and there exactly what my sister and I were whispering about after she hung up with the funeral director on the day my mom died. We were both giving him “the look”—-which he obviously was unable to decipher—-to stop asking and drop it til we could tell him, later, privately.

But, no.  He’s all about instant gratification and pouted out loud and continued being incapable of picking up our signals and hollered til one of us got so frustrated with him that it was blurted out.  Yep, that was the other big secret in my life so far.