Friday, December 27, 2013

Unwelcome Familiarity

  Im not sure what's worse, the diagnosis of MS or becoming familiar with the disease. Along with a 5 day migraine,  I started getting "clumsy" mid week last week.  I went to put a baking sheet on the stove and rammed it into the side of the counter instead and all the potatoes shot off onto the counter..just misjudged it.  I also broke about 4 wine glasses last week alone just by misjudging the distance in between while putting them away and CRASH.  Next, I started losing motivation and energy earlier and earlier throughout the day, began tripping over all the kids toys on the floor, bumping into things, etc...  By the end of the week I had pins and needles throughout my body, couldn't walk too well after 6pm or so and had terrible pain in my neck and back.  So, though I knew there was nothing anyone could do if my symptoms were a result of a new lesion, I figured I should report in with my doctor regardless.  The farther I get from my Tysabri infusion, the more likely I am to get a breakthrough lesion.  The doctor thought it was urgent enough to send me in to get an MRI and see her that week.  They also monitor the tysabri patients closely because of the high risk of PML.  So, off I go for a day at Yale.  By this point I was SO exhausted.  I was looking forward to my nap time in the MRI chamber.  The techs are really great about "checking in" while im in the chamber,  to make sure im OK.  However, everytime they did, It would snap me out of a dead sleep and it would take me a few seconds to realize where in the world I was.  Now, those of you that have had an MRI know its not real easy to sleep through.  The surface you lay on is very hard and the machine, with its beeps and other sounds are very loud.  It has become comforting to me. Half way through the MRI, when they pulled me out to inject the contrast, I let them know this is approximately my 20th MRI, I'm sick, I have 3 young kids at home and I could really use the rest.  So, basically, LEAVE ME ALONE.
   Following the MRI, I was scheduled for an appointment with my MS specialist to review my results.  The appointment wasn't for another 45 minutes so I was looking forward to another opportunity to nap.  No sooner than I curled up in my chair in the waiting room and got that warm sleepy feeling, The nurse called me in....REALLY?  Ugh.  I met with the nurse that takes your vitals, then the one that enters your current medications, then the one that enters what's currently going on....then the doctor.  She had not received the official MRI results or report form radiology, but she could access the scans on her computer already.  So, she would review them now.  She asked if I wanted to see the images as she went through them and I said sure and as she sat there explaining the different areas and views and.....I realized, I was not anxious as I once was.  I was not worried about or dreading the results.  I just wanted the bottom line.  So, here it was:  no new lesions, no signs of PML, nothing.  The doctor ordered some blood tests and suggested I go downstairs to the walk in clinic for some antibiotics for a possible sinus infection.  Off we went...  With labs done and antibiotics prescribed, we headed home.
  It took about two days for me to start coming around.  I just have to assume a sinus infection is what it was and just hope I don't begin becoming antibiotic resistant in this whole process. Saturday, I just barely made it for the last Goshen Holiday Market of the year.  I did great and sold a TON of soap. I am ever expanding my products and now have bath bombs, bath salts, scrubs, facial bars, body butter and more.  My newest products are wine soaps(a Chardonnay and Cabernet) and soaps and fizzies with Activated Charcoal.  Its become quite a fun hobby and profitable too, at least through the Holidays.  You can purchase limited soaps on my web site, www.mybeautifullifewithms.com. By Sunday I was much better and was able to begin preparing for Christmas Eve.  I had one more dreaded activity before I could concentrate on my Christmas preparations though.  My infusion.  Luckily, Ivory LOVES going to these dreaded things.  We get Dunkin Donuts on the way and look through magazines and watch movies for the two hours Im hooked to the IV.  After that was done, I was free to enjoy the Holidays.  My Mother in Law was visiting and Al was home.  So, there was no reason to rush.  We shopped, got mani pedis, etc...
   We started festivities by all putting on our new Christmas pajamas, making hot cocoa in our new mugs and watching a new movie(Despicable Me 2).
 I love making new traditions with my family.  Ones we can look forward to and count on every year and, most importantly, create memories.  The next night was Christmas Eve.  We hosted, in our new home, and had all our family for food and celebration.  Much to the kids delight, we even had a visit from "Santa".  One of the older guys from the Goshen Fire Co. (who resembles the jolly old fella in real life) spends the night before Christmas travelling from house to house visiting all the children.
  Our community, here in Goshen, is like no other. It is truly "The Land of Milk and Honey".  I cannot imagine raising my kids anywhere else.  People remark about how far it is from everything.  I think that is part of its charm.  Even being far, I can get my fresh milk, world class chocolates, Nodines smoked deli meats, Maple Syrup(I only use that, not sugar, so we go through a lot) and more right here in town.  I can still leave my kids in the car while running in to the post office.  Most of the people that work in the town are our neighbors.  My oldest can ride her bike down the road or walk through the woods to her friends house with no concern.  There aren't many places like this.  I also love the comfort of knowing that when I am not around, that the community will be there to look after my family.  Now, or in the future.  They will make sure my kids are happy and safe.  I can envision the future when our son is belly up to the bar some night at AJs and he gets a tap on the shoulder from one of our friends telling him to get home before his dad has his ass.  LOL. 
   So, Anyway, we spent Christmas Eve in our new home surrounded by our loved ones.  It was almost midnight by the time everyone left and we cleaned up and I knew Santa's time was running out for the evening for he was about to drop from exhaustion.  So, I had Al start the bedtime routine while I stuffed stockings, put out gifts, wrote letters, ate cookies, powder sugared the floor and, finally, packed..that..stinkin..elf..away.. one.. last.. time.  I am hoping he gets lost in the shuffle and forgotten about by next Christmas.  How in the world, when your children go to sleep with you and wake up with you are you supposed to have time without them looking to move that thing?  A ritual developed, obviously, by someone with way too much spare  child free time on their hands.
   In our household, we like to instill in our children, the TRUE meaning of Christmas.  In fact, every year,  I read them a story about the real meaning of Christmas.  I made a point of only getting them one gift each.  I do not know what happened.
 
  Santa finished up....I mean I finished up and went upstairs to tuck everyone in and they were all sound asleep :(  Though I missed watching them all flutter to sleep, I kissed them all and wished them a Merry Christmas.
The morning was no different than anyone else's house, a flurry of wrapping paper and candy.  But, in me, it was different.  It will always be.  For better AND worse. Regardless, It was the best Christmas ever!




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