Maine

We are now living in our new town in Maine.  It is a beautiful place and so small, the tour of it takes about 10 minutes.  I love it.  The remodeling of our 150 year old home is slow going but will be worth it in the end.  One of the most important things is incorporating safety items in the home.  This is not as easy as you might think.  To try and anticipate what I might need in the future compared to what I need now is frustrating.  There so many uncertainties with this disease you never know what you might be dealing with from day to day. So we are doing our best and have decided to add as we go.

If you have ever remodeled a home or even just redecorated a room, you know this comes with STRESS!! There are days that are so much fun and then days where you just can't think about it one more minute.  Not one room in the house doesn't need something.  It will be a long process and one I'm looking forward to.  Someday I will be sitting on my porch remembering when we were living in a construction zone!

My parents recently visited and stayed on the waterfront.  My mother and I spent ours outside on the deck watching the Whales swim up and down in the bay.  It was the most amazing thing and a day I'm sure I will always remember. I'm pretty sure we will be looking for property for my parents if my Dad got his way.  He spent one of the days here fishing with my husband and son and loved being here.  They are coming back to visit around Thanksgiving and I'm really excited.

Winter is coming and we are getting the house ready the best we can.  We have visited in the winter but have never spent a full season.  Wood deliveries and stocking up are our priority in the next few weeks.  I'm waiting on our first snow.  Hot chocolate, shoveling and a fire in the wood burner.  Can't wait!!

If you ever get a chance, take a mini vacation up Rt. 1 in Maine. It is the most beautiful drive I have ever taken.  A postcard around every turn.

My little of everything today is the bakery here in this little town.  My Dad was like a little kid after his shopping experience there!  They also have a live cam that you can watch that shows the bay and hopefully spot a whale or just watch the boats go in and out.

Moose Island Bakery

Lucky Girl

I constantly see a lot of posts about lack of support for some people with MS. I guess I've been very lucky, my family and friends have been nothing but supportive. I think it's very important for people in our lives to be educated about MS and the effects can have on someone.

Someone can look perfectly fine, but could be having muscle spasms and pain, that they just aren't calling attention to.

The most important part, in my opinion, is trying to keep the persons stress level as low as possible. Also family and friends understanding that. It's not always possible,
but I have found cutting out negative people or situations have helped a lot.

I don't think I would have been able to get through this far without the support system I have. And also knowing the people I don't talk to everyday, or for a while, sometimes give me the space I need. And still love and support me regardless!

I'm a very lucky girl.

My little bit of everything this week:

My new support page on Facebook.  It is for all chronic illness.  I hope you will click like and join the group.  Feel free to add your thoughts or links to the page!

MS Support and Information

Please click this link to support Kelly's Zeros! I have wonderful people in my life helping me raise money to stop MS!!

Walk MS 2013 We have almost hit our goal!

Hallucinations Anyone?

I’m curious to know if anyone else is dealing with this.  It’s been the past few weeks and they are scary.  I’ve done some research and it seems it is a symptom, but very rare. They are happening at night and are so real it’s amazing.

I am a little nervous that one of these times I will actually get up during one of these incidents.

It takes sometime after I am fully awake to know if it’s real or not.  This is how “real” these incidents are.

I’m hoping this is not something that will last and is a temporary symptom.  I’m forcing myself to stay awake certain nights because they are frightening.

Anyone else experiencing this?

To MRI Or Not To MRI….

In the past 3 weeks I have finally been feeling almost back to my old self.  Spending time with my husband and son, laughing, sitting up and most days pain free.  Thanks to a doctor whose sister had MS and understands completely what I’m going through.  So when I woke up last week from a nap and couldn't move my right arm, I came up with every excuse I could think of.  Something MUST have fallen on it while I was sleeping, I was imagining it, I must have slept wrong.  Right??  Three hours later, I was pretty sure a ghost that MUST live in the house, did not sit on me while I was sleeping and this was an attack of some sort.  I write with that hand, not to mention I wipe my ass with it. #shit

The phone call to the MS Center in St. Barnabas is pretty routine these days.  Nothing to these nurses “seems odd”  it just comes with the territory.  So, these symptoms would require an MRI and some blood work to check my white count that has been hanging around for a few months, of course with out explanation.  #crap

Should I or shouldn't I?  I have been feeling so good any bad news from this MRI might throw me back in the hole.  You know the one, that you crawl out of from time to time.  And I had just come from the bottom of the pit.  The lowest point possible.  I’m pretty sure I saw #Lucifer.

To properly explain where I am today I have to take you back to where this attack began.  From March of 2011 I still have not been back to full capacity.  I tried for a while to hide it, and explain things away I think more for other people than myself at first.  I refused to give in to this thing, then.

In 2012, a few months of just existing, seven different pain or muscle relaxers and a neck surgery later, in August, our vacation was approaching.

Usually, I’m packed and ready to go a month before, but when the day we were leaving, I was still dragging my ass trying to pack, should have been my first clue.  Heat is not good at all for someone with MS, but as you know, this shit did not apply to me.  In tears, I got in the car for the trip to Savannah, St. Augustine and Disney.  I tried my hardest to put on a good face for my family, but my body was failing me.  There were more breaks this year then last year, more pool time to get out of the heat, and more hours in the room while the guys went out.

When we hit Disney, I was way to proud to use a motorized wheel chair.  Not at my age, no friggen way!  So in the middle of Epcot (the countries) in 115 degree heat, when my legs could take no more - my husband and son held me up on the long walk back to The Boardwalk. I showed them. Right? #stubborn

The journey home from #vacation2012 is a blur and so are the next few months.

Each day turned into the next without me noticing.  My sons first day of High School, something I waited for since his first day of Kindergarten is a non-memory lost in a blur of pain and depression as different parts of my body stopped working.

The lowest point was missing my Grandfathers funeral because we were not as of yet equipped with a wheelchair or was I even able to sit up for periods of time and breathe properly.  I couldn't add more stress to my Dad that day, so I stayed home and my husband paid my last respects.  I said my goodbye in a private way.

Halloween, Christmas, New Years passed and I was now using the walker I detested.  The amount of weight I have put on was just another wonderful side effect of meds/non activity.  The new blue and silver wheelchair was my only way to leave my house and be transported to Dr. Appointments.  A nice man from JFK home physical therapy came to visit, but it was determined I was to sick to participate.  It would add more stress to my body.

I was losing all hope that I would ever feel normal or look normal again.  My marriage was deteriorating along with my limbs.  I was pushing everyone away.  It had been a month since I had spoken to anyone on the phone.  I cut off all visitors, except the cleaning service.  There were days that I would hope to die, and then make a deal with god that I didn't really mean it.  Tears were a normal part of my days and nights.  Wishing for just 24 hours of no pain.

And then something changed about a month ago.  It was almost like a black and white movie changed to color.  I sat in the living room and John and I talked for hours, my son was so shocked to see me sitting there, It took him a minute to register.

Our upcoming move to Maine did not seem so daunting, I was excited.  I started to have emotion again.  Laughing was so foreign to me that for the first few days my cheeks hurt.  It felt great.

Which brings us to the arm incident and MRI.

I’ve never been nervous for an MRI, but this one terrified me.  Somehow I knew things were going to well.  So when the phone rang the next day I was pretty sure this was not just a courtesy, “hey you did a great job laying still for an hour and a half - Good Job!”  It was more like “Are you sure your arm is your only symptom? You can’t think of anything thing else?”  Pure panic sets in at this point in the phone call.  Even if I there was something I sure as shit just blocked everything else out but that question. “Kelly, there is a large active lesion on your spine, we need to see you right away.” #fuck

So far my arm strength has return to somewhat normal and I’m feeling ok.  I’m not sure what will happen in the next few weeks, if anything but mentally knowing you have a ticking time bomb in your neck can screw with you - if you let it.

PS:  We've ordered the motorized wheelchair for vacation.

So, to MRI or to not MRI….


My little bit of everything this week is 
Walk MS  - Stop this monster in its tracks.