Physical Therapy & other Nonsense

Sometimes life has a way of kicking you a good swift kick in the gut doesn't it?  And you may fall down and decide to pull yourself up again and just when you are about there, yup you guessed it, something goes and knocks you back down again.  Has that happened to you?  It's kind of like when you were a kid and visiting the ocean and you were playing in the waves.  Remember?  I know you do.  Anyway, that's what I feel like sometimes.  I'm guess we all do to a certain extent. 
Bu today I am speaking specifically about physical therapy.  Remember back when I said that my doctor had prescribed it for me as a way to 'take a vacation from myself'.  Well, IT"S NOT!  It's still me, in my same dysfunctional body and if that's not bad enough they make me work.  HARD WORK!!  I mean I sweat and everything.  The horror!  Can you even imagine.  This is no vacation. 
I want to know:
            Where are the margaritas?
                                   Where is the beautiful scenery?
                                                          Where is the sun?
                                                                           Oh, for crying out tears where is the hot pool boy? 
Believe me, this is no vacation.  At least not any that I've dreamed about.  Now I admit that I have been known to having dreams of grandeur, but this is ridiculous!  And this is the worst of it, there is no end in sight.
This is the thing, I go in and I work out-I exercise my muscles to wear them out so that they have no choice but to relax.  After that, they give my muscles electric stimulation.  Which I admit I like.  I lay down for it and no one touches me and sometimes I even get a blanket.  After that comes the torture that is commonly known as massage.  This isn't your pretty spa type massage either.  It's hard and it hurts.  She is trying to get the bunched up knotted muscles to unbunch and un-knot, using her fingers, hands and sometimes her elbows.  I have to hold on to the table so not to fall off the chair!  She usually get the knots out, but the next day I am so sore from the massage, I would swear that I am bruised.  Then a day after that I go back again and the knots are back, so we start all over again!  UGH!
So how long do I keep at this hoping that something will give?  Oh, the other thing is that is cost $10 out of pocket each visit and I am supposed to go three times a week and it usually takes about an hour and a half.
Not that $30 a week is a huge amount, if it works it's not much at all but if it doesn't, it's way too much.  Plus the time committment, that's a big chunk of time.  And y'all know I don't have a lot of it anyway. 

Oh sorry, I am whining.  I'm over myself, now.  Not hard to get over myself.  All I need to do I thank God for my many blessings in life, and they are so abundant.  I am so wonderfully, truly blessed.  So selfish of me to be complaining of something so insignificant as this.  Now it's out and done.  I'll get dressed and go to PT and be glad I can get there on my own steam.  Some can't.  I will pray for them and give thanks that I can power my own boat.  (So to speak)   Sometimes I just need a gentle reminder.  Or maybe, a good strong kick in the gut.

Jerry and Me

I'm a fan of Jerry Lewis.  Yes, I admit it.  I loved all of those old comedies like "The Nutty Professor", "At War With the Army" and "The Errand Boy".  He cracked me up!  But more than making me laugh, I have always admired him for his tireless efforts on behalf of the Muscular Dystrophy Association.  Ironic, Huh.

When I was a kid, my brothers and sister and I I would often stay up all night and watch the Jerry Lewis MDA Telethon.  We cheered him on as the tote boards rolled out the new high numbers.  (In those days the numbers actually kind of rolled!)  We challenged each other to stay up all night, to see each act as they came on stage and to hear each story, each tale, each heroic act, and see Jerry tear up with each donation given in honor of 'his' kids.  We did our best to raise money and to make our donations when we could.  We didn't know why Jerry was so dedicated to this cause, but it didn't really matter, he was and we watched.  It was a Labor Day Tradition, and it continues to be one.  

I had no way of knowing then that I would come to know the MDA in such an intimate way.  No way of knowing that  Muscular Dystrophy would have an affect on my life in the way that it does today.  Who would have guessed it?  Often when I tell people that I have Muscular Dystrophy they are surprised, often shocked.  I am not what they 'expect' of someone with the disease.  For one, because I walk on my own accrd and for another because I am female.  Something that I didn't know is that many people associate MD as a 'male' disease.  Well, I am  here to tell you - it can and does affect both male and female members of the population!

*myotonia*Steinerts*genes*Chromosone 3*Limb muscles*ptosis*MMD2*CPAP*distal muscles*mexilitine* EKG*Provigil*cataracts*alleals*diabetes*electromyogram*EMG*muscle biopsy*degenerative*progressive*auto-somonal*weakness*slurred speach*cardiac arrythmia*

A few yeas ago these were just word to me, now they have a whole greater meaning.  With Labor Day right around the corner I wanted to take a moment to remind you to take a moment and be grateful.  For your health, for your family, for your job, for whatever.  I have much to be grateful for and I try to remember that daily.  I'd also like to ask that if you are so inclined, please make donation to the MDA this weekend, every bit helps to do so much.  The research that is going on daily is amazing and I am convinced that a cure will be found and soon!  There are so many different types of neuromuscular diseases that are helped by the MDA, your dollars can do so much.  I urge you to take a few minutes and go to the website and see what is being done-you will be amazed! 

And that is the end of my public service announcement.  On to our regularly scheduled programming. 
Have a safe and happy Labor Day!

Monday, Monday!

Can't stop that day!  Much as I would have liked too, just couldn't keep it from coming.  And come it did, way too early this morning, Monday morning arrived much to my chagrin.  How I wished it was still Sunday for one more day.  I just wasn't ready to face Monday morning and all that goes with it.  Bleh! Blah! Pho-ee!

The weekend was blessedly uneventful.  I went up to Tootie's on Friday night and we went to dinner and caught up on the local chatter.  Haven't seen the gals in a while, so there was much to catch up on!  After dinner we headed back to Toot's for some cropping fun.  I was not terribly inspired, so I just worked on some paper pieced page layouts that I don't even have pictures for!  Ha!  How do you like that?  But when I do have pictures, I'll be ready.  It was good just to be doing something though.  I have been so behind and so unorganized that I really don't know where to start.  I need to print out pictures before I can scrap them and before I can print them out I need to put them on the computer and organize them and that all seems like so much work right now.  I have serious issues, I know! 

So Saturday was the last day of the tax free shopping for back to school clothes, so Michelle and I took Bella out and got her a few things.  She didn't need a whole lot right now, just some tops and pajamas, and a few dresses.  We  had some luck-not a bunch though.  I had a coupon for Gymboree and it was the first time in recent memory when I went in there and wasn't tempted to buy anything, and I had a coupon!  They didn't really have anything new that was for fall.  They had new summer things, but we didn't need any of that.  Children's Place was a mess, and just plain strange styles they had out!  Nothing that I'd put on a first grader.  Luckily Carter's still has clothes for little girls that look like they are for little girls.  She was happy with what we got, so that is what's important anyway, right?
When we got home though I was so tired I laid on the couch and was out before I knew it and woke up when Jim came home and was completely disoriented.  I hate that feeling! 
Sunday he had hoped to go to Hersheypark for the day but I just wasn't up to it.  The man has boundless energy and I just don't any more.  I woke up feeling like I had been the victim of a terrible bar brawl and didn't even have anything to drink!  Bella sat on my lap and asked me why I was vibrating, my muscles were all just convulsing and twitching so much.  She kept asking me to make it stop, and I told her I wished I could.  Took a long hot tub to help to ease the tesion in my muscles, but that didn't help a great deal.  I just felt pretty wiped out all day.  So Jim wanted to clean the garage and basement-I let him.  I helped him, just not a great deal.  I really wasn't up to a whole lot.  I took a nap Sunday too!  And, I didn't take one picture this weekend!  Not one!  Nothing to share.  Sorry!!
Hopefully I'll start feeling like myself and be a little more cheerful and a little more productive for you!
Till then...

What did you do?

I've thought about this a lot question a lot, wondering over and over how best to respond.  It might seem like a simple enough question on the surface.  But trying to find a way to respond that is best for me and the person questioning can be difficult. 

Let me start at the beginning for you, where this begins anyway.  Muscular Dystrophy, myotonic dystrophy to be specific.  It is important for me to state that I am not at all embarrased by my disease nor am I in any way ashamed, nor do I feel like I have a particular burden in life to carry.  It simply is what it is.  "Myotonia is a symptom of a small handful of certain neuromuscular disorders characterized by the slow relaxation of the muscles after voluntary contraction or electrical stimulation. Generally, repeated effort is needed to relax the muscles, and the condition improves after the muscles have warmed-up." So, for me this often results in a fairly significant limp or staggering gait, until my muscles have warmed-up or been able to relax.  I can't control it and I don't know when it is going to happen, it is nothing that I can feel in advance.  So it is very noticible.  I have been known to stumble occasionally, although rarely fall.  Sometimes I have no limp at all, sometimes I limp a lot.  So, the question(s) often comes up: "What did you do?" "Did you hurt yourself?" "Are you okay?" or the dreaded comment about my age!  So how do I respond?  How would you? 

I have tried to defer with the 'I'm fine' or waving away the question with a smile and a wink, like I have a sceret or was caught in the act or something.  But more often than not especially at work, the questions persist.  'Really, can I help you? Should you be doing that' and on, and on.  Because I know the questions come mostly from a place of concern I am not bothered by them, it is not that people are nosey but concerned.  And so I answer as best and as simply as I can.  I say that nothing is wrong that I have MD and my muscles are a little stiff but that they'd loosen up in time and I'd be fine.  But then, more often than not it happens, the person in question mumbles something about not knowing, averts their eyes and tries to make a quick escape.  I have embarrased them, leaving them to feel as though they have opened a door best left unopened.  My intent of course is not to make anyone uncomfortable meerly to answer their question.  I don't want to lie and say that I hurt myself or something of the like as that just doesn't seem right.  I am direct and choose to answer that way yet I don't wish to make anyone feel badly.  I don't tell the truth to engender sympathy because I don't  need sympathy.  I am living well it just happens to be with Muscular Dystrophy.  I have been extraordinarily Blessed in my life and have nothing to feel sorry for myself for. I work hard at being a good steward of God's love, a hard worker, and the best that I can be.  Sometimes it is difficult to live with the pain I wont lie, but I really don't think that I have ever thought of myself as having been cursed or saddled with this disease nor have wished that it was someone else instead of me.  It is me and I don't mind talking about it.  I try not to bore people with the details, but if you ask I might tell you. So, why does it make people so uncomfortable?  Is there a better way to answer that question?  What would you do?  If you were to ask me that question, how would you like for me to answer you? 
I'd really like to hear from you.

I'm Workin' It!

Just had to pop in for a minute to let you know that I am seriously working it!  Yesterday despite the heat, I went out at lunchtime, put on my new sneakers and walked for a full half hour.  That may not seem like much to you, but when it is nearing 90 degrees and humid as can be, you feel every one of those thirty minutes-believe me.  So at the end of the day I logges over-are you ready for it- 15,000 steps on my pedometer!  15,000!!! Can you believe that! I forgot to check the mileage on that, but it was over 6 miles.  Today my legs and my gluteus maximus are really feeling it for sure.  Ha!  I'll keep you updated on the progress...

New Plan of Action

I can't believe I am doing this but here I go.  I had just about finished this post and then lost it!  Anyway, I've posted about the fact that I have not been feeling well as of late and been dealing with a lot of migraine headaches.  I have been in a downward spiral since December, suffering terribly!  I've had a headache practically every day and a migraine averaging at least once a week.  After this past weekend, I knew it was time to do something about it.  I called the doctors office on Monday morning and much to my surprise they had a cancellation on Tuesday and I was able to get in right away.  (Usually it is a wait of at least several weeks.)  My neurologist really took his time with me, studied my history and reviewed everything with me, then did an exam and we have a new plan of action.  I had been taking Midrin when I got a migraine, but I am not taking that any longer as we didn't feel it was working.  We both felt it was imperitive to stop this cycle that I am in, so to that end he prescribed Prednisone.  Now, I hate taking Prednisone.  It leaves a terrible taste in my mouth and I gain weight when I am on it, but it does work and at this point that is all that matters.  He also had me stop taking any type of analgesic, fearing it might lead to rebound headaches, nad he started me on a preventative called Topamax.  For those times when I get a migraine, he has prescribed Maxalt. So this is what my day looks like:

Isn't that terrible!  Some I take in the morning, some in the evening and some are for a finite amount of time.  Good thing we have a prescription plan!   Additionally, he has put me on a migraine 'trigger diet'.  Although I am pre-disposed to migraines, they can be triggered by foods and I am to stay away from those foods. The list includes: caffeine, chocolate of any kind, alcohol, MSG, Soy Sauce, cheese, peanuts, peanut butter, broad beans, pizza, hot dogs, ham, pre-packaged foods, flavor enhancers, meat tenderizers, and the list goes on.  I figure it can't hurt!  I have to go back to see him in a month. 

Have any of you suffered with migraines?  What do you do?

Not Again!

Now, I try to have a good sense of humor about things.  I mean, generally I take things pretty well.  (For my brothers and sisters: I've grown!)  I do still have a bit of the "Drama Queen" in me, that is just my nature but by and large, I have learned to go with the flow.  So when we hear that snow is expected and everyone is caling it 'that four letter word', I let the kid in me come out and get a bit excited.  I'm not afraid of driving in the snow after all, we had more than our fair share growing  up in N.W. New Jersey, I've even been known to play in the snow a bit.  But may I just say: Enough Already!!!  Yes, we are expecting another storm to dump more snow on us today and tomorrow.  Actually, it is two different systems that are expected to come through and the they have upped (is that a word?) the expected totals from 6-10" to 12-20".  Oh- My- Goodness!! 

Jim and Timmy did a wonderful job of clearing the snow that we got over the weekend.  They did the very large majority of it, but I did help.  A little.  After the plow came through and cleared our road, if you can call it that, our driveway was then blocked in.  I went out front to attempt to work on that while Jim and Tim were in the back clearing off the deck and hot tub.  I was only out there for a few minutes before my neighbor came over with his snow blower and said that if I loosened the snow, he'd then use the blower on it.  No problem, right?  After about 20 minutes of it my arms were burning and I was experiencing some serious pain. 

Let me say that I do have some difficulty in comparing pain levels and discomfort because of my MD.  When I was going about the diagnosis process and was asked what I was experienceing, I would describe the initial discomfort as somewhat akin to what you feel after having had your blood pressure taken, and go on to describe that a bit.  Finally, one of the doctors looked at me and said that most people do not feel pain or any lasting discomfort after having their blood pressure taken.  Hmm, news to me.  So maybe you can see where I am coming from, I can't always compare things in an accurate manner because my sense of normalcy is different from most.  But let me tell you this, my arms were KILLING me!  After finishing up and going inside, my arms were shaking and twitching.  That evening, I spent some time in the hot tub hoping to alleviate the muscle spasms and cramping that I knew would come.  (Yes, I went outside to use the hot tub in 30 degree weather.)  When I woke up yesterday morning and attempted to move, it was then that I knew that the hot tub had not worked.  Every inch of my arms, chest and underarms ached!  Driving was difficult.  I mean, I hurt.   And as I said, I only did a little. 

(Bella had some fun!)

Jim was probably aching all over.  Not that he said anything, because he didn't.  That is until yesterday.  When I got home from work he was on the phone.  He got off and said hi and a short time later he again went to his den and got on the phone.  Later last night, he told me that he had called every store in our area looking for a snow blower.  He said that he just didn't think that he could move another inch of snow, let alone another 10 or 20!  Unfortunately, there was not one snow blower to be found.  I guess everyone had the same idea.  So, it looks like we will be shoveling again tomorrow or later today even.  Say a prayer for me, would you? 

Chester likes the snow.  He'll go outside and just lay down in the snow.  Timmy let Chester borrow his scarf!

Heading into the weekend

And guess what we are expecting?  That's right, more snow!  It is expected to start sometime tomorrow afternoon and end on Saturday.  Early reports are guessing anywhere from 20-50 inches before it is over and if that's not enough, another storm should hit on Tuesday!  Joy. 
Tomorrow I will head down to Baltimore for an appointment with my doctor at Kennedy Krieger, she has moved from Hopkins.  Kennedy Krieger has a opened a new Center for Genetic Muscle Disorders and Dr. Wagner (the doctor that I see) is the Director of the Center.  The center was opened in December, so I am anxious to see it.  After my appointment with Dr. Wagner, I will be seen by a Physical and Occupational Therapist there at the clinic.  I've not had any therapy at the clinic before, so I think it will be interesting to see what they have to say and/or recommend and to see if it is any different being as there specialty is people with these specific types of muscle disorders.  The physical therapist that I had seen in the past had never even hear of the type of MD that I have and had Googled it shortly before my first appointment. 
After I finish up at the clinic, I have to return to work for a while and then I am going to pick up my co-workers 5 year old at his school and take him home with me for the weekend.  Michele, my co-worker, is going away for the weekend with her boyfriend and his 16 year old daughter to celebrate the 16 year old's birthday and she had asked me to keep Chazz for the weekend.  Chazz had spent a weekend with us last Summer, and Bella is anxious to have  him visit again.  So we will see what the weekend brings!

Less Words Wednesday

I am suffering from laryngitis and a rotten cold.  Not feeling well.  I am trying to limit my speaking, as it is difficult to talk or to be understood, but that is a lot easier said than done! 

Anyway, here's a priceless picture from the weekend-my Mom entertaining her Great-grandaughter!

Feeling a bit better

I was sent home from work shortly after my arrival yesterday.  Aparently I looked 'awful'!  Who knew?  At least my look matched the way I was feeling!  Ha!  So I went home, got a drs. appointment, got an antibiotic for strep throat and a sinus infection.  She also gave me Tylenol w/Codiene to help me sleep.  Feeling a bit better today and expect to improve from here on out.  I mostly rested on the couch catching a few naps here and there and went to bed early. 

I did manage to wrap the gifts that we have for our Bella. All I can say is WOW!  Between us and Michelle, that child is getting a lot.  She is so much fun though.  I put the presents under the tree and when she came home from school she noticed them right away.  She came in, gave me a hug and whispered in my ear 'Did you see all the presents?'  When she opens her gifts she always squeals with delight and says 'It's just what I wanted!'  Once she even said 'It's just what I wanted that I didn't know I wanted!'  How cute is that?

After dinner last night, Jim took Michelle and Bella downtown to the Creative Arts Center to see the display of Gingerbread Houses. Bella loved it!  Jim said that she would just stare at them and point out the different features.  It was a good display, too bad I had to miss it.  Bella's favorites were one that was made to look like the Candy Land Game and one that was a castle. 
Tonight I plan on spending some time creating.  I have a mini album to make for a girl at work and I haven't even started on our Christmas cards yet!  I may forgo them this year for  (gasp!) storebought!  A girl's gotta do what a girl's gott do! 
Hmmm!  What is Roxie doing on the furniture! 

That's all for now. 

Why do I blog?

I sometimes wonder.  I don't really know how many people read this, but I have decided that I don't really care.  Blogging for me is an outlet, a place where I can express myself, a place to share with others, a place to be brutally honest.  For those of you that know me, you may be asking yourself when haven't I been brutally honest?  But if I am to be honest, my lies are mostly of omission.  I tend to paint a picture of my life that is about that happy things, the nicer side of life.  Which isn't to say that those things are lies, but it does mean that I do try to temper what I say at times.  Especially to those closest to me. 

That may not make sense to you and even writing it, I can see the why that might not make sense.  Sometimes, not always but sometimes, it is difficult to tell those who I love and who love me how I am really feeling.  Whether it be emotionally or physically, it can be difficult.  I can do that there though.  I feel a sense of freedom to write whatever I feel.  Maybe because I have no one looking back at me with sympathy, horror, sadness, anger or whatever they might be feeling.  My audience is mostly unknown, allowing me the chance to speak/write without repercussions.  (For the most part.)

Now having said that, I will tell you-my unknown readers-how I feel today.  So, here goes.
Today is my birthday.  I am 48 years old today and I feel it.  In some ways, when I think back on my life thus far I see snapshots.  Clinging to my Mother, afraid to go to school, school days of play practice, color guard, chorus, classes, friends, family trips to the beach, my SISTERS (and if you are one of them you will know what I mean), Christmases, my wedding, the birth of my children.  In snapshots, life has a tendency to fly by, as in real life.  I have  had so many memorable moments that I think of with a 'happy heart' that it can often, and miraculously, outweigh those times that I might choose to forget.  I haven't forgotten those things, they have helped to shape me and to make me the person that I am today.  I think that we can all say that.  I've been fortunate because the happy times have been far more frequent than the more difficult times. 
And, I am feeling a bit reflective today.  A bit nostalgic. 

Remember when you were young and one summer day seemed to stretch on forever, when you didn't worry about grown-up things.  It was simpler.  For us.  For me.  Now those grown-up worries are part of my daily life.  Things like the mortgage payment, the safety and well being of my children, my parents, the economy, the President, my health.  I never imagined that I would have to worry about my own health, nor did I ever imagine that I would be classified as 'handicapped', but I am.  And I do.  And sometimes, those words are difficult to think of when referring to yourself, much less to say.  Today, my health is an issue.  Not much has changed so dramatically from yesterday or the day before or the day before that.  But there is a shift.  I can sense it, I can feel it.  It is difficult to say what that is, whether it is real or imagined and wheter it has anything to do with celebrating another birthday.  But it is there none the less.  And at times, it hangs over my head like a pendulum,  swinging back and forth between a healthy me and the me with the knowledge that I am forever changed.  Forever different.  Not changed for the worse, but changed.  Does that make sense?

I work hard to put a smile on my face and to act like I am not bothered by Muscular Dystrophy.  But I am, I think anyone would be.  It was and is a diagnosis that I never thought I would hear when referring to myself.   So much else before that-but MD?  Me?  No!  But for a long time, longer than I care to admit, I knew there was something amiss.  Something not quite right.  And as the years passed and my experiences with the medical world became more familiar, I pushed it back.  I blamed myself, my overactive imagination...anything but what I couldn't find an answer for.  I was scared to find out that what I thought to be the truth, that there really was nothing wrong with me physically.  My problem had more to do with mental status.

And now?  How do I feel now, after three years of knowing?  Of living my reality?  I can honestly say that I am in a good place.  The adjustment to the news was swift and seemingly effortless.  Living with the reality of that news can be more difficult, but I am okay with that.  I really am.  I find that I take less for granted.  I don't worry about the future too much.  There's no point.  Not because I fear for it, but because there is no way to know with any degree of certainty what that future may bring.  But then, no one really can.  Sometimes, I feel the need for an escape and would love a reprive from this reality.  My body aches, my muscles are slow and sluggish to respond to the commands that my brain is sending.  I don't sleep well, I tire easily and constantly fight fatigue.  I feel older than my years.  I worry about my loved ones.  I wish that they didn't have to be so aware of the war that my body is waging against me.  I don't always tell them, I try to protect them.  But they know.  They see it in me and I can see the knowledge in their eyes.  Especially my Mother.  I hate to see that worry in her eyes, a worry that I know is for me.  I can do nothing to change that. 
What I can change though, is the way that I  deal wiht my disease.  And if I can show the world that I am okay, better than okay really, their worry will decrease.  Make sense?  I''m not sure, but I hope so.

And I know that some of you may find what I am about to speak of next even more difficult to hear or believe, I will say it anyway.  I have God on my side.  His Love gives me strength, it gives me hope.  For without it I would be nothing.  It is often difficult for people to speak openly of their personal relationship with God, and I am no different.  But I know that I am not alone.  I know that He is with me, helping me, giving me strength and  hope and lifting me up when I am down.  And that knowledge, that faith is worth more to me than healing.  More than gold.  Because it is with Him and through Him that I will be healed.  That we all will be.  The struggles that create my present are what will help me to gain freedom from the bindings of my worldly home.  It makes any difficulty I have here on earth, easier to bear.  And today, on my birthday, that is my wish for all of you too.  To know the Love of God.   And if just one of you can grow in your  faith, if just one person is changed, then I would gladly take it on again.

Happy Birthday! 

Rough few days

Sorry about my lack of posts last week, but it has been a rough couple of days.  I have had a killer backache that began mid-week and has continued throughout the weekend.  I have been noticing that my pain level has increased as of late and my mobility issues are becomming more pronounced.  My ability to move 'at will' is not always there and I have noticed more 'ticks' and 'shakes' than has been the normal for me.  Yesterday I was sitting on the couch and went to get up to go to another room and though the upper part of my body was raring to go, the legs were somewhat frozen in place.  The momentum caused me to fall, luckily the chair in the family room caught my fall and kept me off the ground for the most part.  This morning I emailed my doctor letting her know of these most recent developments and she responded that it sounds like the disease is progressing. 
Progression is to be expected and I had come to that conclusion on my own, so the doctor's words were merely confirmation.  She may choose to do some additional tests when I see her in January, but it is not likely.  Either way, I am fine with her decision and trust in her to do what she thinks is best for me.  I do have quite a bit of input into my care and I like it that way.  I keep myself informed and feel free to ask questions and speak my mind, but all in all I take my cues from the doctor regarding treatment. 
On a lighter note, I got a new computer at home on Saturday!  Yeah!  Now I just have to get it connected to the internet and I'll be all set, everything else has been added on already.

What do you think?

So, any idea what this is? Go ahead guess. This little guy has been a bad boy and has gotten quite a bit of press lately. Yes, it is the H1N1 virus...I have been accused of not being a worrier. That is not totally true, I do worry quite a bit about some things and not so much about others. For instance I worry about my family, but the weather-not so much. I try not to waste my time or energy worrying about things over which I have no control. Case in point-H1N1 (a.k.a. The Swine Flu) I got an email today at work from a gentelman who was visiting our office from California. I was asked to assist this person while he was here, which I did. He was conducting interviews in our offices and I escorted each of his candidates from our reception desk on the 3rd floor to where the interviews were being held on the 2nd floor, I brought him lunch, shook hands with all of the candidates and the guest, and cleaned up after his departure. When he returned home to San Francisco, he emailed me to say thank you for my assistance. No big deal. This morning I received another email from him, informing me that he has been diagnosed with H1N1 along with 2 of his daughters. As is required of me, I notified the VP of HR and in doing so, his Executive Assistant. She kinda squalked, threw her arms up in the air and began wringing her hands in worry. Me, I laughed. Her response to me was something along the lines of 'How can you be so calm?'. To which I again laughed and said something like 'No sense worrying about it, either I'll get it or I won't.' But it got me thinking. Why are some people more prone to worrying than others? My mother in law worried if she didn't have anything to worry about! I can't be bothered. Maybe I am just lazy and worrying takes too much effort. I don't know... Which isn't to say that I don't take precautions, I do. I wash my hands and watch where I am going and don't intentionally put myself in harms way, but I try not to let worry rule my day or even my thoughts.
When I went to Johns Hopkins to received the results of my blood test for MD, I was taken to a private room where the genetic specialist along with a counselor were waiting for me. When I was given the positive diagnosis my response was somewhat less than perhaps what was expected. I was happy. Not happy that I had in fact tested positive, but happy to have an answer. Overall, my attitude regarding my health in the years since has been generally to take it in stride. That's not to say that I don't feel poorly, more that I don't anger, sadness or loss regarding my diagnosis. The truth of the matter is, my path is not clear at this point. Only the Lord knows where and how I will end up and I trust in Him. Do you? Do you worry about H1N1, anthrax or stepping off the sidewalk and being hit by a bus? Let me know, I'm interested.

Days like this...

Test my strength. I try not to complain, I try to be accepting, even grateful and for the most part I am. Some days are just tougher than others. Physically, the last few days have been difficult. I have been experiencing terrible back pain, complete with spasms and knots and headaches. I have noticed that when my body is especially stressed it is often accompanied by a headache. Which makes sense if you think about it.
Today is an especially difficult day. In addition to the afore mentioned struggles, there are other issues today. The muscles in my stomach area are tight and unable to relax. In addition to the discomfort that this causes, my stomach is distended and it is difficult to stand without a certain amount of pain. Standing completely upright at this point is not an option. According to my doctor, the independant research that I have conducted and other 'Myotonics', this is not
unusual and in fact, I do deal with this on a fairly regular basis. What bothers me the most about these times is that I am no longer able to remain anonymous. I am noticed as being different. My struggle has become public and open to scrutiny, debate, criticism and pity. Really.
So what do I do? How do I deal with this? The answer for me has not come without its own amount of struggle. But here it is. When I feel especially burdened I take time to dirty my knees. Yes, I pray. I don't pray for healing, or to be free from pain or hurt. I don't pray for research, or a cure, or a magic pill. I don't pray for anonimity. I pray for strenth. Strength to witness in the face of adversity. Strength to trust in He who has chosen me for this journey. And most of strength that I can grow to become a better Christian. That is perhaps the most difficult of all. I try to give honor and glory to my God each day, in word or deed. To be kinder, to be less judgemental, to help someone in need, and to look closer at my neighbors' struggles. But I am not perfect, I am flawed, I am human. And I know that I could do a better job. I pray that I will. There is something that I can do, that I should do. I can feel it, but I have yet to grasp it. I am on the precipice, so close but still so far away.
Easy to say, but so much tougher to do. What am I meant to do? What is in store for me? How can I have been chosen, yet be so unworthy? Do you know? Do you ever feel that way?
Maybe someday the answers will be made clear to me. But I fear that that may be too much to pray for.
Karen

A LONG and Busy Couple of Days

We last left off that I might get grumpy, well I got more than grumpy! As the day progressed I got a headache that led to a full blown migraine. I went home and laid down and then began my prep at four o'clock. That was pleasant. Not! But honestly, the migraine was worse. Between that and the prep I hardly slept at all. By the time I got in for the procedure I couldn't wait to be knocked out! The good news is that when I woke up I felt pretty good. The headache was gone and I was re-hydrated. While I am still laying down on the bed after just being woken up in recovery, the dr. comes in to talk to me. He says that they found dyverticulosis, but that is normal in-are you ready- 'old women'. Jim had the good sense to glare at him and tell him that I am not an old lady. He quickly rephrased that to 'middle aged women'. I guess I have to take into account the fact that he wasn't looking at my face, rather my other end. And I would have to assume that you can't tell a person's age by the condition of their colon. I mean, it doesn't have rings that you can count like a tree trunk or anything right? But old woman-really?! Hmpf! The worst part is that he didn't find the source of the blood loss so I have to have another procedure. I am really beginning to hate this doctor!

Saturday, I kept it pretty low key for the most part. Then in the evening we took Isabella to see High School Musical 2 at the Weinberg Center. It was a production put on by a local dance company with kids ranging in age from 6-15. By the look of things, we were probably the only people there not related to or friends with one of the performers. It was not my idea of a great time, but Isabella loved it! It was fun just to watch her watch it! Sunday I worked on some cards and crafts, and then Monday we went to Hersheypark. We left the house about 7:30 a.m. and returned home at around 10:30 p.m. -we were beat! It was HOT as blazes. The sun just seemed to scorch my skin and I am red today. I was in no way ready to get up for work today, but I am glad that we went. The pictures above are from yesterday.

Oh, and Bella lost that other tooth on Sunday! She is now missing the two top and the two bottom teeth in the front!

We inturrupt this life...

My Get up and go, Got up and went! Its an old joke, but it sure does justice to the way that I feel sometimes. And those times are now. I have been sore. Achingly, throbbingly, painfully sore. And it's no fun. I try not to complain, but sometimes I've got to. Often, mostly in the evenings, I want to run into the backyard and scream. I want someone to help me, to make it easier, to ease my pain and my worries. And someone does. Not in the conventional way that you might think, not with medication or exercise, but inside. I feel better knowing that I have the comfort of my home to rely on, some don't. I feel better knowing that I have the love and support of my family and friends. some don't. I feel better knowing that I am capable of having my legs take me where I want to go, even if it hurts, some don't. I could go on, but I won't. You get the picture, you know where I go to find that comfort, that sense of being well, that sense of gratitude. And I go there. I also take a break and drop my sore and aching self into this bubbling fountain of youth, pictured above. Now don't judge me, because we really couldn't afford this plunge. But we got it anyway. Why? Because when I am able to immerse myself in the warm, wonderful, wetness of water-I am temporarily set free. I am buoyant. I am weightless. I am young. I am free.

That feeling, that sense of being in control of my own self, my own body doesn't come without a price. Because you see, I have to get out. Sometimes it takes a while before reality rears its ugly head again, and sometimes it is just minutes away. But it is a reprieve.

And sometimes that is enough.