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...

Twelve Short Years Ago

When we think about today's to do list, let's not forget about those that gave their lives and lost their lives today - 12 short years ago.
When we think about the horrible commute to work, let's not forget about the horrible commute of those in the airplanes 12 short years ago.
When we think about dropping our children off at daycare, let's take a minute to remember those children lost and the children who lost their parents on that devastating day 12 short years ago.
When we think about tonight's dinner menu, please don't forget about those who never made it home to dinner 12 short years ago.

When we think about the terrible fight we had with our spouses, take a minute or two to forgive them, because too many lost their spouses on that horrible day 12 short years ago.

When we think about the doctor's appointment we have today, try to remember all of those who still suffer from the effects of September 11, 2001 - just 12 short years ago.





I remember that day. 

Everybody remembers that day.

John was unemployed at the time, and was home in the shower when it all started happening and unfolding on the TV in front of me.
I was crying hysterically as I watched person after person jump out of the buildings to escape the fiery death that awaited  behind them.
John came out in a towel, asked me what was wrong, and all I could do was hold him as he learned about what was happening.
Olivia was just a baby.
She was drinking a bottle in her crib, unaware of the horror going on in New York, Virginia, and right here in Pennsylvania.
I have the unfortunate job to remind her year after year of the unthinkable actions that caused such devastating death and formidable loss that day.  I have to remind her that while she was just an infant, many people lost their lives and gave their lives just 12 short years ago.

I hate watching her face every year at this time as I sit down to watch the various programs that discuss in agonizing detail the terrible acts committed that day - just 12 short years ago.

But, that day has forever changed our nation's history. 

That day is a day I will never forget. 

That day, I will always remember those who bravely gave their lives to save those who were trapped. 

I will hug my husband and my daughter a little tighter tonight before bed. 

I am thankful that I don't have to think of a lost loved one that day.

I will never forget.

 

Slow Dancing by the Fire on Jeep Island

Well, as far as camping trips go, the last one we just ventured on was probably one of my favorites...
It is certainly in the top 3 on the camping scale. 

I know why I enjoyed this one more than I have the other countless trips.

I do try to have fun in each scenario we find ourselves in, but I have to admit that some camping trips I'd like to try and forget.

But, never this past one. 

I'll never ever forget this past camping adventure on an unnamed island on the Schuylkill river.  Well, technically, it isn't named by anyone that can put it on a map.  But, John named this island Jeep Island.  

Why, you ask?

Because when he first started camping on that island with his best bud Mike, they found a miniature jeep on the island.  You know, one of those cars that little kids ride around in?  Well, there was a jeep version of those cars on the island.  Hence the name... Jeep Island....

They've camped on other islands before too.  Throughout conversations with John and overhearing John on the phone with Mike, I have heard several names for the islands....
Let's see...
Jeep Island, Daytona Beach, Spider Island, Turd Island....
I think there's one more. 

But anyway, we ended up on Jeep Island.

And we had so much fun!

From the time we get to the island to the time we leave the island, my husband John is the most caring individual there is. 

This time was no exception.

We "docked" our "catamaran" that John made (don't worry, I'll post a pic of it later), and he helps me out of the canoe and always pulls out my camping chair, and orders me to relax and enjoy the view while he unloads and sets everything up.   Every single time.

Then, after everything is unloaded and set up, John will start making his coffee and he always asks if I would like a cup.  Then he'll make mine, put in the perfect amount of creamer in it, and hands it to me...

This particular trip was so much more than just enjoying nature or exploring some of the woods surrounding us...
This past trip was more of a "romantic getaway" for us.

I had no idea that this man had so much up his sleeve for this weekend...  I just thought it was going to be like the other camping trips we went on - and like I stated above, I always try to have fun no matter where we are...

John made me my favorite Mountain House meal, poured me something to drink and we sat there, at the fire eating our dinner.  The fire itself seemed to know that it had to burn for a long time....  It was so big and orange and warm, it was just perfection inside of a fire ring.

After dinner, John put on some music on Pandora.  And we listened to it and just sat by the fire.  Every now and again, we'd make some small talk, but we've been married for so long, small talk isn't always necessary.  We were just happy being there.  We were living in the moment, that is for sure.

Then, one song came on.  A song that - for my own girly reasons - I've been thinking a lot about.  It's a song we both danced to at John's senior prom.  When it came on, John was stoking the fire a bit.  He turned and looked at me, extended his hand, helped me up out of my chair, and locked me into a warm embrace that almost took my breath away. 
He quietly asked me if  "I wanted to dance."  

And so we danced. 

The moon above us, the fire next to us and the warmth of each others arms and just like that, I was in Heaven.  We were the only people on Earth that evening.  And it was something straight out of a Harlequin Romance novel... 
Of course, he didn't stop romancing me after our slow dance by the fire.  But, those other details, those very special and intimate details stay between John and me. 

Let me say though, that I didn't think I could love John any more than I did that evening before we danced on Jeep Island.  But, I was wrong.  I fell more in love with him that night.  And I cannot stop smiling. 

Some girls get flowers (don't get me wrong, I've gotten the bouquets every now and then too) and some girls get chocolates. 

I got what I needed.  A loving and caring guy.  A guy who is forgiving, compassionate, full of humor, and full of romantic gestures.  A guy that I know in the bottom of my heart, God sent to me.

I know alot of you are rolling your eyes or sick of my saying how good I have it.  How I hit the jackpot in the husband category.  And that's ok.  I really don't care what you naysayers think. 

John himself gets weird looks when he's with the guys and they're all complaining about their wives.  They look at him like he has three eyes when he says how happily married he is.  But, we are.  We are more than happily married.  We're practically giddy about our marriage.  And in December, we'll be married for 14 years.  And I'm more in love with my husband than ever before. 

My John takes such good care of me.  He really does... 
And it's the little things too that he does. 
Did you know that he put a lift kit onto his Jeep.  And that it's near impossible for me to climb in and out of it.  He keeps a folding stool in his Jeep for me.  Gets it out when I'm getting in and back out again when I get out.  How freakin' sweet is he?????   But those are the kinds of things that he does that makes me realize that he is the best husband in the world.

My heart and soul longs for John when he's away.  He truly is my other half.  And I'm not complete without that man...

So, roll your eyes and laugh at me if you want. 

But, while you're rolling your eyes, I'm busy being loved by the most awesome guy in the world....

two canoes held together by ratchet straps and polyurethane boards

two canoes held together by ratchet straps and polyurethane boards

my handsome hubby planting a kiss on my cheek for the camera <3

the view from Jeep Island

we sleep in hammocks when we camp

Our Love

As someone who lives in  a state of pain 24 hours a day, when ever you pile on another ailment, it always adds to my personal and unending discomfort.
In this case, it's bronchitis.  Well, I think now, it's down a level or two to just a head cold.  Maybe it's a chest cold.  But, it actually feels like both. 

So, my feet and legs are quite bothersome and I can't lay down at night without coughing and "wretching around" - as John likes to call it - all night long.  First I'm hot, there goes the blanket.  Then, I start to shiver, back underneath my blanket.  All night, coughing, switching positions, sneezing... And since I'm this sick - my blood sugars are WAY out of control.  So, I'm also up a lot due to that. 

sigh...

Last night, I got maybe - maybe - an hour's worth of sleep last night.  Scratch that.  Wait, it was less than an hour.  I turned on my Coast to Coast AM radio station, which shuts itself off after an hour.  And when I finally did doze off, I woke back up, listening to the same station....

Then, I turned on the TV.  I was trying to look for anything that might interest me.   But, in the wee hours of the morning, TV sucks ass.  So, I went out to the kitchen, grabbed my awesome new cell phone, a pair of headphones, crawled back into bed and started watching Netflix.  I ended up watching "Pretty in Pink" with Molly Ringwald.  Good movie.  Great 80's music.  I thought for sure, I'd start getting sleepy. 
Instead...

I couldn't stop thinking.  Thinking of Olivia and her new school year. Hoping for a good year, void of homework fights and groundings...  Thinking of John and our upcoming short camping trip.  And then thinking of all of our shared dreams.  All of our moments of romance, laughter, and yes - even rage.

Which brings me to what I'm trying to say.

John is my soul mate.  I knew we were made for each other.  We were meant to be together.  Forever.  Even when we were younger and my parents forbid it, we still snuck around to just be with one another.  Even after my folks took him to court because he was an adult and I wasn't, we still fought tooth and nail to be together. 
There was absolutely nothing anyone could do or say or even preach to keep us apart from each other. 
We are in love and there will never be anyone else for us than.................... us.

So, last night... awake and definitely not sleeping.  I thought. 
I thought of John's senior prom.  I thought about how at 15, I was one lucky girl.  Getting ready to accompany my boyfriend to his senior prom.  When I got ready, I had all sorts of thoughts and expectations of what the evening might hold.
I put on my dress, my high heels, and did my hair and make up and waited for John to come pick me up...
When I laid my eyes on him walking up my sidewalk, I remember how he literally took my breath away.  There's my laid back John, always donning a sweatshirt and jeans... But, there he is... handsome as the freakin' devil in tuxedo....

We stood around and "said cheese" a million times for the parents. 

Then, it was time to finally make our way to the hotel where the prom was.  Up by the Berkshire Mall.  The Inn at Reading. 
It was beautiful.  That was the first time we danced a slow dance together. 
Songs like "Lady in Red" and "You Look Wonderful Tonight"  and even "Don't Dream it's Over" still bring me instantly back to that perfect evening with John....
The way we danced was perfect.
And it wasn't awkward.  We weren't straining to keep up the rhythm.  We just fit. 
And we've fit in every other way too since that evening...
There's not a day that goes by that I don't at least have a tiny thought of that perfect evening together.  It was (up until then anyway) the most romantic night of my life...

So, this morning, as I heard John climb out of bed, pour his coffee, and then sit down with me, I couldn't help but just be thankful that I have such a good, such a caring, such a romantic man to share my life with...

John is my whole world. 

Sometimes, when I talk about joining a Bible study or eating out with a girlfriend, John will remind me to talk badly about him.  Other women want to complain about their husbands, and will get annoyed if I have nothing bad to say about mine.

But, that's how it is with John.  He's really close to perfection.  There's just something about him that has embedded itself in my head and into my heart and soul. 

I could not have asked for a better man.  I really love my man. 
And I intend to stay here at home and get better so we can go on our little camping adventure this weekend. 
A tsunami won't stop me from canoeing down the river and beaching the canoe at the island of our choice, setting up a little campfire and just enjoying each other.... 

so, I guess that's it for now....
I'm sick.  And I'm in pain. 
But, I have a man with me in my life to make it a little more bearable. 
He's here to make my soup.  Hold my hair for me if I start to vomit.  Here to tuck me into bed and wash my hair for me if it hurts to bad to stand....
I love my John... so much...

And it's a complete love. 

Because he loves me too....