Thursday, February 25, 2010

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?

Wednesday, February 24, 2010

Happy Birthday Tim!

Yesterday was Timmy's birthday, my baby is 24!  He has had a lot going on in his life as of late-for the good.  He currently works nights as a sous chef as a restaurant in DC and he recently was hired by the place next door to work days.  He will be one busy young man!  The chef/owner of the new place is Michel Richard, a rather famous French Chef.  Tim is very happy to be working there and learning new techniques, but he now works from 9-3 at one place and then at 3:30-close at another.  Which brings up the next change, Tim is moving out.  Flying the nest.  He and 2 friends all cooks, have found an apartment in DC just 11 minutes via Metro from their work.  I know it is a good thing and I am thrilled for him on many levels, but I'm going to miss my boy!
So is this little girl!  She just adores her Uncle and her face just lights up when she sees him.  The feeling is quite mutual I assure you.   His tentative move in date if all goes as planned is March 1st.  So wish us all luck!  Changes for him, but for us as well! 
We have been struggling with issues of space in our house as of late.  Our five year old grand daughter has a LOT of stuff!  (As do we.)  So with Timmy moving on, it frees up his living space.  He is currently in the basement which is finished to include a small bedroom, a full bathroom and a large rec room with a walk out to the patio and back yard.  Jim currently has his den in Tim's old bedroom upstairs, which is a fairly good sized room, and Bella is in the 4th and smallest bedroom.  The plans are first and foremost to  paint the basement  as Tim moved in before the painting was even done!  Once that room is painted, Jim will move his den stuff downstairs, then we'll paint his old den for Bella and move her in there and then paint her old room for- ME!  Yes, I will have a real scrapbook room once again!  It will include a TON of painting, cleaning, organizing, but it will be worth it in the end.   I can't even begin to guess how long it will take.  I just hope that when we finish Timmy doesn't decide that he wants to move back in.  Ha!  So lots on the horizon.  Anyone interested in some painting?

Thursday, February 18, 2010

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!

Monday, February 15, 2010

Lazy Weekend

And that was okay with me!  I have not been feeling well as of late and I have been struggling with it.  I'm being brought down by constant headaches (terrible ones), pain and extreme fatigue.  I try to just go on about my business, but sometimes it is more difficult to deal with and this has been one of those times. 
So, Friday night we stayed in.  I watched the opening ceremonies of the Olympics and then thought I'd go to sleep, unfortunately sleep eluded me.  I was up for the large majority of the night, so Saturday morning I didn't feel too rested. 
Michelle had asked me to drive her and Bella to dance class, because the roads (and the drivers) had Michelle freaked out and she didn't want to deal with the downtown structure on top of it all, so I too them.  Let me just say, the roads were awful!!  They had been plowed, but most were one lane and that was all ice that was rutted.  Huge mounds of snow everywhere, trees were down and people were getting stuck in the middle of the road,  It was not fun!    After dance, we pretty much did nothing.  Jim had wanted to run a few errands with me and I tried, but was really struggling and felt just awful so we went home.  After some rest, I felt the need to redeem myself to Jim for pooping out on him, so I made him one of his favorites for dinner-chicken pot pie.  I used the Pioneer Woman's recipe and it was delicious!
We had to  miss church again on Sunday and I really hate that, but between me feeling poorly and the downtown roads, we didn't have much of a chance.  Our church is in downtown and the parking can be a challenge on the best of days, but with the snow on the sides of the roads there is very little to no parking.  It is one of the disadvantages of our church, but because there are so many advantages to it we stay.
Bella had been excited all week about Valentine's Day.  She just couldn't wait!  All week she worked hard on little projects for each of us and when she went to bed on Saturday night she said I'll see you on Valentine's Day!  She had even suggested to her Granddaddy that if we were up to it (meaning me!) we should go out to dinner.  So she came down in the morning with cards for Jim and I as well as a small box of chocolates.   We had to be in the room together and then we gave her a box of chocolates and a little gift and a card.  She was just so excited!  After a breakfast of red pancakes, which I cooked, Jim ran to the grocery store and came home with flowers for me, Michelle and Bella and these babies:
Yum! He is so thoughtful and loves to give gifts!  They are of course chocolate covered strawberries and where the stem was removed it is stuffed with a mixture of ricotta cheese and whipped cream, like a cannoli cream.  So good!  Michelle had bought sparkling grape juice and so we had a little celebration.  Bella ate three of these strawberries!  She thought they were just great!

She also insisted on 'cheering' with her glass.  She is too cute!  She thought that the special juice tasted just like the 'stuff we dip our bread into at church'! 
Afterwards, Bella went off to play in her room and Michelle and I watched "The Proposal".  It was a very cute movie, if you haven't seen it I'd reccomend it.  After my nap, we all went off to Longhorn for dinner and when we got home we watched The Amazing Race.  It was a great day! 
So, what did you all do?  Hope everyone had a great weekend.

Thursday, February 11, 2010

The Morning After...

Thursday.  The morning after the blizzard of 2010.  We survived.  The winds yesterday and last night were unbelievable!  The house was quite literally shaking.  The snow finally stopped, sometime late evening and today dawned with a beautiful blue sky and the sun shining.  Although it is difficult to tell how much more snow we received, the t.v. news reported somewhere between 20-24 inches.  We started the big dig out this morning.  Jim and I went out and I lasted about 45 minutes.  It was brutal.  The snow is so heavy it was difficult to lift the shovel.  Jim stayed out and Michelle joined him for another hour or so, before they came in to take a break.  After the break, Tim joined forces with Jim and they worked for another 2+ hours and were finally able to free up the driveway and the cars.  We haven't seen a plow yet, but the road crews are back on the roads and working hard.  Most of the roads in the area are closed, and there is a state of emergency in effect.  Cars are not allowed on the roads and face a $500.  fine.  Crews worked to retrieve 30 cars burried in the snow on area roads and 23 people were stranded in the blizzard.   Some waited 10 hours to be rescued, some all night long.  Now they are trying to focus on clearing the roads and opening them up to traffic again. 

Wednesday, February 10, 2010


This was the view from my garage this morning.  I couldn't open the front door at the risk of letting all the snow in!  The news had reported that by 10 this morning, Frederick had already received 12" of snow.  Since then, it has not stopped snowing.  All day.  Snow.  My work was nice enough to let us know that if we didn't want to go in we could use unscheduled leave time.  Wow.  The driving conditions are so hazardous that cars have been ordered off the roads and the snow plows have been called back in as well.  So, no snow removal for the time being.  It is crazy! 
It is difficult to measure how much we have gotten because we can hardly see out the windows, visibility is near zero.  The drifting is wild, we have 9-10 foot drifts in spots, yet one area of our deck is practically snow free.  The winds are at 40 MPH and not expected to die down until later this evening.  Might have another snow day tomorrow. 
I have been able to spend some quality time in the Scrapatorium and with the family, so that is good. 
What's it like where you are?

Tuesday, February 9, 2010

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!

Monday, February 8, 2010

Monday at Work

We made it through the weekend and Monday has arrived.  The above picture I took from my deck looking into the backyard.  As you can see, we got a lot of snow!!  That hole to the left of the picture is our little pond, we got around 34 inches total.  Guess what?  Another storm is headed our way and is expected to dump another 6-10 inches on us.  Schools are closed today and I'd guess they will be tomorrow as well and with more snow expected who knows when they'll go to school again!?
I made it to work today, but if we get more snow as expected, I don't think I'll make it in on Wednesday.  People around here don't drive too well in the snow and though I can manage, I worry about other drivers.  Many don't even take the snow off their cars.  This morning I saw a woman driving (and I was on the road with her for at least 15 minutes) she had 2 feet of snow on the top of her car and all her windows, except for the windshield were covered with frost/ice.  That's crazy!
Despite the shoveling, snow removal and an extra 5 year old, I did manage to get some scrapbooking in over the weekend. 
These pictures of Bella were taken at her pre-school last year.  They had picture people come in and they were allowed to dress any way that they wanted.  I thought they came out great!  (You can click on the pictures to see it bigger.)
This layout was scraplifted from one of Becky Higgins' books, quick and easy.  The pictures were from our trip to the pumpkin patch in 2008, so I got some catching up to do! 
What did you do this weekend?  Any snow where you live?  Let me know!

Saturday, February 6, 2010


And lots of it! We had several inches when I went to bed last night and then I woke up this morning to a couple of feet. The tv reported that we had 31 inches at about 11:00, and it is still snowing!  This is Jim shoveling last night, yes in his shorts!  The man doesn't get cold. 

This is a view out my front door this morning.!  And it is still snowing!! 
I have been dealing with a wicked headache and stomach stuff, which has just about put me out.  This weather really messes with me big time.  Haven't moved much off the couch today except to take a few pictures. 

Friday, February 5, 2010

Happy Friday!

Well, I had to cancell my appointment with Dr. Wagner today.  The snow storm is expected to hit us around 10 this morning and I don't want to get stuck in Baltimore or anywhere  but home for that matter.  Everyone around this area is preparing for a big winter weather event!  Schools are either closed or are dismissing early.  Frederick County Schools are closing 3.5 hours early.  Businesses are closing or preparing to close early and the grocery stores, hardware stores and gas stations are ringing the registers!  The radio this morning was announcing where you could find bread, milk and toilet paper.  Ha!  I will be leaving work early today, hopefully by 1:00 and prepare to be snowed in! 
I am really hoping that Bella and Chazz (my co-workers 5 year old son who I will be keeping for the weekend) will play well together and I can get some time in my Scrapatorium this weekend.  I'll let you know.  In the meantime, have a safe and happy weekend!

Thursday, February 4, 2010

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!

Tuesday, February 2, 2010

Another sunrise

This morning as I was driving Isabella to her before school program, she pointed out the sunrise to me.  I glanced at the sun rising above the horizon and said a quick  yes, my mind already wandering to other things.  But then she pulled me back.  From the backseat I heard her little voice say "I love the sunrise GaGa." I was surprised to hear that and I asked her why she loved the sunrise so much and to my surprise she replied "Because it is the start of a new day. God is giving us a new day."  Then she rembered, "It's Groundhog Day!" she cried and began singing a little song.  From the mouthes of babes.  Indeed, He has given us a new day, a fresh start, a chance for renewal, a chance for redemption, another sunrise.  I smiled and agreed with her and a minute later we were at school, getting out of the car and heading inside.  I gave her a kiss and told her that I loved her and she said "I know!  All the way to the moon and back, but not as much as I love you!"  I left with a smile on my face and in my heart, what a way to start the day.
As I drove to work I couldn't help but think about what she said.  A new day, given to us by God.  So many opportunities await us each day, each day a gift.  Then I got to work and my day began and I quickly forgot about the events of the early morning.  A busy morning at work waited for me and it became more hectic by the minute.  I was being pulled in several different direction, able to be in just one place at one time, and unable to satisfy the demands that were being asked of me.  I wanted to yell, my frustration was mounting and with each minute that passed, I found myself becoming angry.  Then I stopped and I took a moment for myself.  I took a deep breath and looked out the window and saw the beauty the waited for me just beyond the window.  And I took a minute to pray.  To thank Him for the beauty of the earth, for the richness of my family, for a job that keeps me busy, and for a new day.  And I felt better.  My burden was lifted.  I could only do what I could do, no more.  And what doesn't get done?  It will still be there tomorrow. 
So I will keep working and when I leave for the day, I will reflect on what I have accomplished and what waits for me when I get home.  My family, and a 'special dinner'.  Bella's request.  Her favorite-ham.  In honor of Groundhog Day and six more weeks of winter! 

Monday, February 1, 2010

Happy Monday!

Welcome back!  I had a rather productive weekend, how about you?   Friday night I was bogged down by this migraine headache-still.  I can't seem to shake it for good.  It will go away for awhile and then rear it's ugly head back up, making my life miserable!  I really wish that we could find something that would work for me to get rid of the pain and prevent the re-bound headaches from occuring.  So needless to say, Friday I didn't get too much done.
Saturday we took the little one to dance and when it was over we went out to find that it had begun to snow.  We were only expecting to get an inch or snow, but as the snow kept falling and falling it became apparant that the weather man was wrong.  Go figure!  We wound up getting about 6 inches.  I had to go out in the midst of it all to make a hair appointment, which I wasn't going to miss.  So I got my hair done, cut and highlighted.  Had to get rid of the 'pilgrim' look.  Ha! 
Sunday I stayed in all day and it was great!  I got many of my completed scrapbook pages actually in the scrapbooks.  I don't work chronoligically so I tend to keep the pages in a plastic storage box until they are in some kind of an order.  I started Bella's new album and completed another one page spread for the front. 
She saw the page and asked why she was crying in the second picture on the left.  She's not crying, she was putting the heart in her stuffed animal and the girl that was helping her told her to make a wish before she put the heart in and that is what she was doing!  I cleaned up my room a little and got a few more pages completed, so I felt really productive. 
I know the picture quality isn't great, sorry for that!   I was photographing them in my Scrapatorium and it has no natural light in it.  I love the picture of Bella in the bottom layout, with her mouth wide open.  She had such a great time that day and it shows! 
I also had time to take a nap, watch a movie with my daughter and spend some time with my son, too! 
All in all, a good weekend.