Disabled Doesn't Mean Unabled

I have a pain management appointment tomorrow, and I was just reading over my pain diary.
I know that I'll have to tell the good doctor that I need something else to help manage my pain, because after all - in his words - "You are never going to be without pain."
That sentence and the others he said are all a big jumble in my mind.
Sentences like
"There's no cure."
"We will probably have to try several different medications and doses till we find what works for you."
and my personal favorite
"It may take several years till we find out the right medication for you."

sigh...

John is taking me to my doctor's appointment tomorrow, and I for one am so very happy he's coming with me.  His extra set of ears helps me catch what doesn't register with me.

So, anyway, tomorrow after my appointment, I will probably post something about my appointment. 

While reading over my pain diary, I've noticed trends in it that correlate with blood sugars, stress, and other factors. 
For instance, I have noticed that when my blood sugars are either high or even slightly elevated, I have more pain. 
That's not saying that when I have perfect numbers I am pain free, though.
All I'm saying is that when my numbers increase, so does my pain level.
Also, I know that when things are going on - whatever they may be - intolerable family members, Olivia giving me attitude, or just an exuberant amount of housework - I have an increase in my pain levels.  Emotions that are running high equals more pain.

What saddens me though is all the things I'm missing out on since I do have such pain.

Things like not being able to walk with her to go trick or treating, or playing at the playground with her or even taking a simple walk with her. 

All of those things are things I took for granted when I could walk, run, bike, and play... Had I known that in 2011 I would fall apart and not be able to do those things any longer with my child, I would have taken more pictures, I would have laughed a lot more, I would have sucked the marrow out of every moment possible...

Now, I have the unfortunate task of being a bench warmer.  Of being on the side lines.  Of just watching her grow up, without being able to enjoy -in a full capacity - those memories with her...

So, with great sadness, as I write this post, I have to try and remember that at least I am still here to witness (with much emotion) those things. 

I'm not dead.  I'm just disabled. 


But that doesn't mean that I'm unable.

I'm not unable to see with my eyes that wonderment on her face when she comes out of the dressing room with her prom dress on, or years later, her wedding dress on.  I may be looking at her from a wheel chair, but I can still see her beautiful face as she glows. 
I 'm not unable to see  with my own eyes the tears she'll cry as she holds her first born baby in her arms.
I'm not unable to look upon her face when she proudly shows off her new home or apartment.

So, yes, I may be disabled, but I'm still not unable. 

And that brings me much happiness indeed.

The Sylvia Tea Party

Today, I am so very tired.  I got very little sleep last night, then I woke up with a headache.
Ugh
Perhaps, it's my body's way of saying, "Sylvia, you better calm down."

Perhaps.

Or maybe it's just because I woke up with a headache.  Either way, I do need to calm down.

Today, I made myself some relaxation hot tea and sipped it slowly.  And you know what?  I really do feel relaxed. 

So, I am going to run (or maybe I'll drive... yeah, I'll drive) to the store and pick up some more tea.

I've forgotten how good hot tea is...
I remember one evening in 2006, while in school to learn how to be a massage therapist, our instructor brought in a plethora of tea.  My classmates and I just had a nice, calming evening.  I should've kept up that moment.  But, I selfishly went back to coffee...

So, while sipping my tea, I wrote a little more in my book.  Which, by the way is going fantastically!  I feel like I'm just writing away!  What a grand feeling it is to be writing!  And about John and me to boot!

Don't worry, when it's published, I'll think of every one of you while I'm spending my millions... ;)

I spoke with some friends today on the phone, got some insight and advice on all the "family" drama that is going on.  Yes, I do realize I put family in quotations.  I did that because I do not think of these people as my family anymore. 
John told me today to just "relax" and "let him take care of it".  Ok, John.  Have at it.  I'm sort of glad too.  Frankly, I'm sick of all of it.  I am washing my hands of it - ALL.  Yea me!  I no longer have to worry about it!  Which, by the way, also makes me feel relaxed. 

So, all in all, aside from the headache I woke up with, it was a wonderful day. 
A nice, calm, peaceful day.

I feel like a burden has been lifted and I can continue on with my life.  And for the most part, I'm unscathed. 

The only thing that sucks about it is that Olivia has lost some of her family.  I know that in time, though, this whole thing will be but a distant memory for her.  I had to go into her Ipod and delete some numbers and contacts, but we told her last night that we were going to do that anyhow, and she seemed pretty ok with it.  So, she too will go on with her life.  And now that Olivia will no longer be burdened, I can relax that much more.

I'm going to grab a nice long hot shower, make myself some hot tea and sit down and enjoy the rest of my day...

So, this is me...
A new refreshed me. 
And I couldn't feel better about it...

SHHH!! The 90's are Calling!!

Today, I had intentions of blogging about my childhood.  I thought of that topic while downloading music on to my Ipod.

A task that I never thought possible 20 years ago. 


I mean, over 4,000 songs on a single (ever-so-tiny device) with just a few clicks?? 


Do me a favor - those in their mid to late thirties.... close your eyes and remember what we had to do to get music without having to buy the whole album...

When I was 14 and I wanted a track or specific song, I'd first have to have an empty or at least 1/2 empty cassette tape. 

What a typical stereo looked like from my day...

With that cassette, I could fit an average of twenty songs per tape - which always depended on the length of the song or type of song I wanted. 
I'd also need a stereo with capabilities of recording.  The little red button in the options, right there next to "PLAY l> "  You'd have to have PLAY and RECORD pushed down, along with the PAUSE button. 
Then came the waiting....






The waiting till that one song that has been playing for weeks and sometimes months came onto your radio station.  That song that it seems everyone else owns - everyone else - but not you. 

There you are on the bus, on the school ride home, all of  the friends around you are listening to THAT ONE song that you're in absolute love with, there they are - just jamming to it...
If you were lucky, they'd have the volume turned up so loud, that you too could hear it, even at a muffled decibel. 

So, anyway, this is how it would usually play out for me while waiting for that perfect and ever-so-wanted song to come on to the radio.

Everything would be set up on my dresser.  I'd have the radio on and tuned in, and I'd go about my regular routine - or at least the one routine that I had that kept me trapped in my bedroom till I got what I wanted. 
That routine would be either doing homework, putting laundry away, or cleaning my room. 

 

But, it never failed.

"SYLVIA!!!!!!!"

I'd be summoned to help set the table or to answer an onslaught of questions by a parent about my school day....

Or, I'd be waiting and then I'd have to run to the bathroom....

Whatever the case was, whenever my song would come on...

I'd be straining to listen, eyes wide open and hear the song come on,  I'd say "SHHHHHHHHHHHHHHHHH!" real loud, and then do an array of gymnastics through my entire house that would make any Olympic coach proud.  I would literally run siblings and pets over to get to that RECORD button on time....

Up the staircase, sometimes taking two steps at a time, past the kitchen right in front of me, jump over the dog, bolt past the bathroom, lightning fast down the hall past the laundry room, skip the two mini remaining steps at the end of the hall and literally one foot it to the left where my bedroom was, and where the song is already 10 seconds in, and dive onto the RECORD button. 


SIGH....


But, even though I missed that first few seconds of that beloved song,  I'd play it over and over again.  At the highest of high volumes, sometimes blowing out my speakers on my stereo or headphones.    I'd have that song on standby whenever I had to get the mail from the end of the driveway or walk across the creek to my grandparent's place - my Walkman, my AWESOME Walkman saw many sets of headphones attached to it. 

Of course, with cassettes came the task of winding the tape back into it, or the tape getting jammed into your equipment, at which case you'd still have to wind the tape back into it.  Then, even with all the bad sounding fixes embedded into it, I'd still play that song over and over again...

Until, I'd hear something even better...

Something even more enticing than the song I'm currently addicted to. 

I'd start that process all over again. 

Yup, that's what we used to do as kids and teens. 
How spoiled is this generation? 
I'd say pretty darned spoiled....

I mean, just look at what kids today have....

This and That part 4

You've heard it many times. 
All of my excuses on why I don't get around to blogging, however, are valid ones.
Just been trying to live life, one long day at a time.

So, for awhile, I was dealing with sickness.  Some sort of viral infection that had me coughing and sneezing and had my ears hurting.
After I was on the mend, Olivia got real sick.  In fact, she was so ill, I brought her to the emergency room. 
Let's see, she was put on antibiotics and something for pain in her ears as well.
The very next day, John woke me up and told me how bad he was feeling.

I woke up with a kick start in the pants when I realized it was John talking to me.

That man never gets sick.

He was feeling so bad, he had me call 911 for him because he thought that perhaps he was having a heart attack.

It wasn't heart related, thank the good Lord.  But, he did have a pretty bad case of pneumonia. 

After we all got better, I started seeing a new pain management doctor. 
He was all the way up in Allentown.  But, he knew his stuff and has me taking a new narcotic and made me stop taking my other pain meds. 
I started keeping a pain diary since my visit with him. 
A friend told me how depressing pain diaries are.  She's right.  This thing is so sad to look at.  But, it's important, if I'm going to get the best help possible, to keep track of daily pain.  It's not enough to just say, "I hurt every day." 
I do hurt every day.
But, it helps to know what else the day brought. 
Maybe I was super stressed that day.  Or maybe it was just a regular day and I still felt like I wanted to cut my own feet off.  What if I was cleaning that day and I noticed that I couldn't clean without taking a break every 10 minutes. 
All of the important information goes into my newly started pain diary.

I'm glad this pain management doctor isn't wasting my time either.  He went over past meds, current meds and right away put me on something stronger than I've ever taken before.  I am not after feeling like a zombie though.
I have a daughter I'm trying to raise.  I need real pain relief without the feeling of "cloudiness" or "empty headedness"  that goes along with almost all of the narcotics out there.  But, if I could get a drug out there that helps minimize my pain (at the very least) but yet keeps me feeling semi - human, I will be very grateful. 


I also recently started attending a women's Bible study.  I am really enjoying my journey with the book we're working on.  I was a little intimidated at first, but, after getting to know the women, I find that they're all after the same thing I am. 
Answers.  Answers to burning questions as to how and why God speaks to us.  And why He allows things to continue. 
I haven't received all of my answers yet.  And to be quite honest, I don't suspect to.  But, I do think that I am getting closer....

Anyway, I guess that's it for now...
Next time I blog, I want to blog about my past.  Just give you, my dear readers, a glimpse of what my life used to be like....
I hope you'll all enjoy it...
For now, thanks for reading...
Take Care...