Breaking My Silence

I know that I have been silent for a while now and for any of my loyal readers (both of you-ha!) I do apologize.  I'd like to tell you a little about what has been going on in my life as of late, though I hesitate to do so for fear of sounding like a whiner, but a this is my sounding board-here goes.

Where to begin?  Work.  Work has been very, very hectic!  I don't know if I had mentioned, but I have been in charge of a build out at work.  We occupy space in a three story building and we have had space on both the second and third floors and have needed more, so when space became available on the first floor, my company leased it and began a build out of it.  It was my responibility to work with the contracors, the landlords, and our team to make sure the space was built to specifications.  Further it became my responsibility to bid out furniture, work spaces, white boards, office equipment, etc. choose the vendors and supervise the installs of everything and then to hire movers to physically move the employees who would be moving from the 3rd floor to the 1st floor.  Oh, and did I mention that this was done in less than six weeks?  Yeah, it was fun.  Another thing I may have forgotten to mention is that I have no experience in that field!  What do I know about reading  blue prints and working with electricians and finding a vendor that sells white boards that will cover an entire room from floor to ceiling?  Six weeks ago, nothing-now, a lot more!  I worked long hard hours and came home totally exhausted!  So just as I have finished up this project and think that things will begin to settle into a normal routine again, I find out that we will be aquiring two more 'parcels' of square footage to build out within the building and I have 'inherited' another70 plus or minus files to work.  Gotta love job security! 

Another major issue in my life lately has been my health.  I really hesitate to talk about this because it is reallly difficult for a number of reasons.  Number one is that I don' like to complain.  I try very hard to keep a positve attitude, and most of the time I succeed.  But sometimes, I have to admit to giving in to the demon who wants to bring me down.  I struggle with him and don't want him to win.  I know that the Lord has a reason for all that He does and I know that I am So Blessed, I KNOW that.  So why do I allow Satan to bring me down? Because the pain just won't go away!  I know that and I accept that.  I live with it.  But sometimes, I'd like a vacation from it.  A chance to get away from myself for a bit and remember what it is like to be free from the shackles that bind me.  The pain that is myotonia that grips my muscles and pulls at them and refuses to let up. 
I visited with my doctor at Kennedy Kreiger on Friday and she asked how I was doing and she is so kind.  She has soft green eyes that look deep and I felt safe there.  Because she knew.  So I described it for her, and I this is what I said:  'The pain starts at about a 5 in the morning (on a scale of 1-10) and as the day goes on it gets worse.  By the time the night falls I can't stand it and I don't know what to do with it.  I want to scream, but I can't.  I sit in my chair and I want to rest all of my limbs in soft, fluffy pillows,  or put my body in traction, or float myself in a big pool of hot water.  Then I just want to lie down, so I go to bed, but it hurts in bed.  I can't get comfortable, everywhere the bed touches my body hurts.  So I get up feeling unrested.  It doesn't seem to end.'
And she understood.  She got it.  She has seen it before, there are others like me.  I knew that, because I chat with them on line though I have never actually met one.  But there is a strange kind of comfort in knowing that you're not on this journey alone.  That others have gone before you and others will go after you and what I am going through now may somehow help someone else.  Sound crazy?  I don't know, I fill out every survey and take part in every case study that I can on this disease to help in any way that I can.  Maybe that is why I was choosen, I don't know.  Anyway, bottom line new medcine protocol again.  Trying to mix it up a little.  Also going to try some physical therapy again, different this time.  Gentler, kinder, if we can fnd someone that can work with us.

So there you have it.  Ugly, I know.  I have to dump it all somewhere though.  I tell Jim, but it is hard for him.  He doesn't like to hear it, he listens but then tries to act like nothing is wrong.  I know it comes from a place of worry,  he doesn't want to admit that there is anything wrong, that I am less than his version of perfect.  But then he'll do a complete 360 and sugest that I pick up a new insurance at work that will pay for in home nursing care!  Like I want to talk about that or even think about it.  He's a pragmatist in many ways though and I, well I live for the day. 

I've needed some time to  be quite, to pray, to listen to God and to just be.  I'm getting better now, and growing stronger every day.  What a wonderful time to do that.  I go to church and listen to the hymns and the service and I am invigorated.  I am renewed in my faith and strengthened by God.  He is so good!

And if you have made it this far, I should reward you with a picture of my special girl.  This is  how Bella went to school on St. Patrick's Day!

Can you see the green hair? 

She was so excited!  Ha!

I'm Tired

I know, you've heard it before.  But it bears repeating.  I am tired.  Bone tired, weary.  Exhausted.

                * I am tired of being tired.
                * I am tired of being sick.
                * I am tired of feeling out of control.
                * I am tired of taking pills (prescribed).
                * I am tired of giving up part of each day to naps.
                * I am tired of feeling helpless...

But I am not without HOPE.

               * I have Hope for a cure.
               * I have Hope for patience.
               * I have Hope that my suffering will help to alleviete anothers.
               * I have Hope that the Drs. continue their research.
               * I have Hope that I will be sustained.
               * I have Hope for understanding.
               * I have Hope for that He will continue to carry me when I am weak.
                                   And HE does.  And HE will.


For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for?  But if we hope for that we see not, then do we with patience wait for it.
                                                            Romans 8:24-25

Too Much Activity...

and my back is killing me!  Has been killing me.  It is getting worse and I am not sure what to do about it.  I feel like I am at a point where I am grumpy and over tired and just plain miserable.  I know that you may be thinking 'go to the doctor you dolt', but it's not that simple.  When I go to the doctor's office with this type of complaint, I am given a cursory examination and then they chalk it up to the muscular dystrophy and say that there is really nothing that they can do about it.  So it seems like a waste of both my time and theirs.  Besides, I have to go through that whole getting on the scale thing too and really, I don't want to have to go through that if not absolutely necessary!  So what do I do?  I have been doing some stretching exercises that the doctor had given me when I went to Kennedy Kreiger back in February/March but they are not helping.  Maybe my only option at this point is to bite the bullet and go back to physical therapy, but oh how I hate that.  I am not sure why, but I really don't like going!  It is an hour out of my day that I don't have, it is hard work, I have to dress in sweat clothes (yuck!), never mind sweat, none of it is appealing; but I guess I may have to do it.  Just wish there was a magic panacea that I could take and the pain would just go away and my back would be fixed and I wouldn't have problems with it again.  The worst part of it all is, they don't know what it is, so they can't fix it-just treat it.  Story of my life!  Do I sound a little down?  Sorry.  Sometimes it all gets to me.  It can be so frustrating sometimes!  I don't want to be like this.
It is as though my body has betrayed me and I want to be the way I was.  But I can't go back.  And if I could, at what price? 
                                        Who would have to pay to alleviate my suffering?     Is the pain worth the cost?

         IN         MY          HEART          THE   ANSWER      LIES.... IT IS THERE...WAITING,

                                                  TO                                      BE            
                                                                                                                    REVEALED...

I know the answer, because it was put there long ago.  By a heart far larger than mine.  By someone who know so much more about sacrifice than I ever will.  Someone who gave up so much more than I can ever dream of.  Christ.  He died for me.  He gave His life for me.  So that I can be free from sin.  So that I can have everlasting life.  For you too, for all of us.  And all that He asks of us in return is that we accept Him as our Saviour.  He gives so much, yet asks so little in return. 

So, who am I?  To complain?  To ask for more?  

                            While I may complain at times, I won't ask for my this disease to be taken from me.  The price would be too much to bear.  Because though I may suffer at times,  though I may feel down, I know-are you listening because this is important?-I know that I am never, NEVER alone.
                                                                     Ahhhhhhhhhhh!

                                                Sweet Comfort.       Such Relief!

                              Two                    little                  words            that        mean      so           much ,            that                help                    me                   each         step          of        my                          journey.           NEVER             ALONE.

     He is with me.  And that is all I need.  That is the panacea that I need, the button I can push to make it bearable.  Think about it...

On another note, if you want to see some beautiful hand made jewelry like this:
               

Go to this blog: http://www.karaspartyideas.blogspot.com/

 where she is hosting a special giveaway!  Beautiful stuff!!

       

I lost a day!

I hate it when that happens!  I've been so busy at work that I feel like I lost Wednesday.  Yesterday was Ash Wednesday and it is one of my favorite services at church.  I feel so blessed to be able to repent for my sins and know that in Him, I am forgiven.  The services renews my faith and makes me feel closer to God and to my faithfulness in Him.  Yesterday I missed it.  I just wasn't able to get there. 
As I stated in my last post, I've not been feeling well, and I just haven't been myself lately.  Sometimes it becomes burdensome to live with a progressive and systemic disease such as MD.  I never know how I am going to feel or where my disease might take me.  Will I wake up feeling good, able to walk, no aches or pains or am I going to have difficulty walking, swallowing, or doing any of the 'normal' day to day functions of living?   I don't know from one day to the next.  I try not to anticipate difficulty, but it does seem to find me one way or the other.  My point being, some days are worse than others and the weather is most definitely a factor-extreme heat or cold exacerbates my symptoms.  And we have had some extreme weather!  Through all of this it is sometime difficult not to get down about it.  Depression is often a problem with patients who have a chronic disease.  It just wears you down.   You know what I mean?  I fight it though, as much as I can.  I constantly remind myself of how lucky I am and of the many gifts that I am blessed with.  It is easy to look around me and see someone whose situation is more difficult than my own, and I know that.  I am aware of the pain and heartache that surrounds me.  I pray for others and do what I can to be of service when and where I can.  My faith and my family sustain me and give me strength.  Sometimes though, I can't help but give in to it and feel a little bad for myself.  I don't drown myself in pity or self-indulgence, I sleep. 
Yesterday, I was having on such day.  Weeks of almost constant pain, sleep difficulties and stress had finally taken its toll on me.  I felt poorly and I can only guess that I looked awful, because people kept telling me that I looked tired or asking me if I was feeling okay!  So when my boss suggested that I leave work a few hours early yesterday, I took her up on it.  I went home, showered, played a game with Bella and then I laid down on the couch and promptly fell asleep!  (And according to Bella, I snored too!) 
The resullt?  I feel much better today, more refreshed and ready to take on the day.  God is good!

Loosing something that was never really mine.

Strange title?  I'm in a bit of a strange mood.  Let me tell you why.
Lately I have noticed certain physical changes to my body.  Asside from the normal 40 something rapidly approaching 50 stuff that women go through.  Things are harder for me than they used to be.  Not everything, but some things.  Like what?  Well, walking distances is a tough one, stairs I can do but only in moderation, squatting down-not so bad, getting back up-BAD.  You get the idea.  Normal everyday things that a person does in the course of a day have become a challenge.  Most of you who know me know that I don't shy away from challenges.  I try to meet a challenge head on and go on from there.  Often times that is enough after all, it is all that I can do.  But on a rare occasion it is more difficult to deal with.  Case in point:  I can no longer sing.  Let me try to explain what that means to me. 
I have always loved to sing.  From the time that I was little music has meant a lot to me.  I have been inspired by lyrics, soothed by music, pumped up by music and generally, I just love music.  Singing is my way of getting in touch with my emotions and expressing myself.  I can remember back to when my parents were married-to each other.  I think that my Mom would turn the music on to cover the sounds of her and my Dad arguing, that may be in my imagination, but I don't think so.  Anyway, I remember listening to the lyrics of some of the songs and crying because they made me sad.  To this day when I hear the song "Strangers in the Night", I get choked up.  The point is, I love music and I love to sing.
Now, I was never a great singer.  I can carry a tune, I can sing with emotion, I can sing, but I was never great.  Truth be told, I was probably only slightly better than the average Joe.  I was in Chorus in Middle School and High School and I took voice in college.  I sang in a few weddings and a few events here and there, but mostly I sang beause I like it.  I sang for the Glory of God with my church choir for at least 20 years.  But about a year ago, I had to give it up.  First it was because I was too tired.  Working full time and taking care of a house and home it became just too much for me.  That was my excuse anyway.  The truth of the matter is, I can no longer get enough breath to sing.  In that capacity anyway.  My muscles are no longer strong enough to sustain breath, a definite effect of the muscular dystrophy.  I can sing along with the radio and in the shower and such and that will be enough for me, but it is a somewhat bitter pill to swallow none the less.  Raising my voice up in song was one way for me to not only worship, but it also was an outlet that I used to give back to my church from which I have so greatly benefitted. 
Don't get me wrong, I know that I am incredibly lucky.  All I need to do is look around to see how abundant my blessings are.  Although I am well aware of that and know that in the grand scheme of things, this is but a small price to pay.  Infinitesimal, truly.  Still, it is something that has been a big part of my life.  Something that I have used to differentiate myself.  Right or wrong it is the truth. 
The question that keeps seeping its way into my consciousness though is this, was my voice ever really mine to begin with?  Was I, am I worthy?  Again, I don't mean to come off as a Beverly Sills or Julie Andrews, I know that there is no comparrison.   It was a gift, one that I was not boastful of -at least I hope not.  Maybe my voice was just on loan to me, given to me for a purpose.  It must have had a purpose as everything does.  And in that same vain, maybe that is why it has been taken away.  Purpose.  Now, it is up to me to learn from this experience.  To grow in my faith and in my purpose here on earth.  To be thankful that something that gave me such pleasure was mine, if only for a while.  To be grateful for the life that I have been given, and to appreciate more the bigger things that life has to offer me.  And I do.