You’re doing what? With who? Where?

Phone conversation with Thing One:

Grace :  “While I am in Boston I am going to meet a couple of friends that live in the vicinity whom I met in the blogging world.”

Thing One:  “OK, mom, don’t forget the “proof of life” pictures.”

Grace: “you got it kiddo”

Friday, April 6, 2018

proof of life
Grace Fullnot….last seen wearing pic

Grace:  Good Morning kiddo

Thing One:  What’s wrong?

Grace:  Nothing, just sending you proof of life, Bill will be here in a few minutes to pick me up.

Thing One:  Why aren’t you smiling?

Grace:  Seriously?… Because I am freezing my ass off, and besides I wouldn’t be smiling if I was kidnapped 😛

Thing One:  I’m gonna need another picture

smile
The things you do for your kids….

Grace:  Better?

Thing One: 😀

SMH….for those of you who don’t know…SMH is Shaking my head.  (I really do that A lot!)

narrow streets

 

 

 

 

Superman was supposed to pick me up by 10.  I’m expecting a little Honda Civic to pull up…. he tells me when he’s on his way that he will be driving a truck instead…..ummmm……. itty bitty roads….

“Let me know when you’re close, I might have to meet you on the corner?”

Before I knew it, ( early even ) there he was loading mine and my companions suitcases in the truck.   Bill and I were heading to Salem for the day, where we would be meeting Karyn and Steve after exploring Salem for a bit.  My traveling companions were going to Pax East at the Boston Convention Center, and we would meet up again at a new airbnb apartment near Salem for the night.

Superman Really Does Exist

superman
To keep his identity a secret…this is the only picture of him I will post

Before we ever decided to meet in real life, Bill and I spent hours on the phone.  (not all at one time, though he did provide a big shoulder when I was struggling with Sara’s death) but we’ve talked about our illnesses, our common expression of saying, “are you really sure you want me to answer that?” when people ask for our opinions, and so on and so on.  Not only is he a great writer, but a great friend.

The real reason I am not posting his picture, is because he wasn’t feeling well and hasn’t been for awhile.  That’s HIS story to tell though, if you want to check it out.    As I said, he is a great writer, and just an all around great guy.

After eating breakfast at a little restaurant in Salem, we wondered around to find the Salem Witch Museum (my choice, not his)

I’m not going to say much about the experience, because hearing about the amount of hatred that people endured during the witchcraft trails still gives me the chills, but I did want to share this postcard.  The last room of the museum  is painted with the words on the postcard….. Very thought provoking!

Of course it was snowing in New England…AGAIN

snow in new england
Just flurries though for the time being

Let me tell you a little bit about the other two bloggers that I got to meet.

First of all there is Steve Markesich

grace and steveOf course you can read his About ME page, but I want to tell you about the man I met.  I’m not sure exactly how our path’s crossed.  ( I think he was doing the “my publisher said, I need to add as many people on social media as I can for the book I am writing thing”)  Either way, Steve’s is the first blog I ever started following.

I love the honesty, openness, and determination he displays when he writes about living with Primary Progressive MS.  MS is a nasty monster, and while I would not wish the disease on anyone, it is good to know you have people like this with you on this scary ride.  Poor Steve has also become a dear friend (didn’t know what you signed up for did you?”)  Please take a moment to check out his blog MSich Chronicles.  He does a great job of sharing how he overcomes the challenges that MS has laid at his door.

I had the privilege of meeting Karyn who writes Karyn’s Domain.

grace and karynKaryn and my paths first crossed around the time she wrote this The best blog I ever read.   She sent me a message saying that she had found my blog after reading Superman’s posts in their entirety, and looked forward to getting to know like minded people….

As many of you know lately my life has been filled with Drama, drama, drama, and I haven’t had much time for keeping up with ANY blogs, but the day after we met, I went to her website and saw this post.  (Honestly at first thought from the meme, I thought she was talking about me….lol).  This woman quit her job, and hiked the Appalachian trail!!!  How can you NOT want to know more?!?!?!  Actually , there is much more to Karyn, I encourage you to follow her on her journey as she discovers where she is headed next.  I know that I will be.

I would like to tell you that our “little get together” lasted until dawn and that we all just barely escaped being arrested for a noise disturbance.  But to tell you the truth…. we got together and just talked…..and it was perfect!  (in hindsight, they might have brought duct tape for MY Mouth)

Thank you all for making the trip and spending your time with me.  I look forward to our ongoing friendships!!!!

Newly Diagnosed with MS

I have tried so many times to write a blog or make a video for someone that is newly diagnosed with MS,   I write 1000’s of words, then I reread what I have written, only to realize the advice doesn’t apply to everyone.

The reason for this is that MS is not a “one size fits all” type of disease.  I don’t mean because there are 4 different types of MS, I mean because it affects every single person differently! EVERY SINGLE ONE!

Not only will MS affect YOU differently than it affects your cousin’s sister’s uncle’s aunt that has MS, but any treatments YOU might try will affect YOU differently as well.

I have made this video, more than anything so that you realize YOU ARE NOT ALONE!  As you wade through information on Dr. Google, and hear stories from other people PLEASE, PLEASE, PLEASE keep in mind that people are only sharing THEIR STORIES.  (and negativity breeds negativity)

Some people will tell you to read everything you possibly can about MS.  (Dr. google is a scary monster) Others may tell you to join support groups, Facebook groups, eat an all natural diet, take this drug or that drug.  My cousin swears that “…..” works….BUT you need to pick what works for you.

MS is unpredictable.  There is good and bad information to be obtained from the internet and social media.  If you keep an open mind and are aware of the possibilities, you only prepare yourself for the worst case scenario. You can’t live your life in fear of the unknown, THAT alone can paralyze you.

Below is another video in which I talk about not only how I was diagnosed, but also how I “met MS”.

My story- being diagnosed with MS

So my advice to EVERYONE that has been newly diagnosed with MS or another chronic illness is to:

  1. Take a deep breath
  2. Take another one
  3. Acknowledge that while this may suck, there are worse things in the world
  4. Learn everything you can about your condition, BUT also pay attention to the source ( even if you learn what NOT to do)
  5. Advocate for yourself and do what works for YOU
  6. They call it “practicing medicine” for a reason. Get 2nd and 3rd opinions.
  7. Surround yourself with positive people
  8. Learn to laugh at yourself

As I mentioned at the beginning, it feels like a whole different lifetime since I was diagnosed, (and it has only been 20 years) New ideas and treatments are coming out and being discovered every day.  Never give up!

If you are looking for a place to start your research, here is a link to the National MS Society.

If you need to talk reach out, send me a message, ask tons of questions. In the upcoming week, I have asked 3 other bloggers with MS to share their stories on this page, and or to share their advice about what does and doesn’t work.

This Best of luck to you on this journey!

 

 

The Morning After….”THE VIDEO”

Yesterday, I posted a video I did as a self challenge to put myself out there and face something I was terrified of.  I didn’t watch the video again until today and this morning “Pre-coffee” I made another one after I finished watching the first one.

For anyone wondering “Pre-coffee” should have a clinical definition and be categorized as some other kind of disease.  ( At least for me it is)  I am not a doctor, so I won’t attempt a clinical definition….. but picture this….

Or check out other pins I have collected .  If you have any to share, please add them too!!…But I digress….I wanted to share some things I have learned both about myself, and about making a video, just from doing that ONE VIDEO….. Caution though…the following video was made PRE-COFFEE. (ok while having the first cup or I wouldn’t have been able to turn on my computer)  But as usual I digress…

Here is my second video if you want to see

Other things I learned from making the video:

  1.  How to upload a video
  2. I really DO NOT Enunciate ( which is why I attempted to add captions) to this one… not perfect, it’s alot of work, but yah I learned something new.
  3. I HATE  the way I LOOK and SOUND precoffee
  4. My goofy first video encouraged someone that I consider a VERY SUCCESSFUL blogger to try something she has been putting off…. DOUBLE WIN!!!!
  5. I’m gonna keep “doing me”.  I know that If I did this or that when making a video, it would be more successful, but baby steps for now.
  6. Drink coffee before EVER attempting to blog or video

Ok Now I’m just rambling…. Thank you again to everyone that is following me on this adventure!!!! I am really enjoying it and learning lots of new things!!!!!

 

 

 

 

Do you look like your pet?

As I laid my head on my “dog pillow” the other day, I noticed  that our hair consists of the same colors (blonde and black).  It made me recall  a meme, post, article, or video that I have seen that showed numerous pictures of dogs and their owners with very scary resemblances. I began to wonder if there were other similarities… while my mouth is always open like hers seems to be, ( I talk ALOT) I think I have a bit better control at keeping my tongue inside my mouth. Then again, I also think  people that know me in real life have plenty of pictures of me sticking my tongue out.  (Not sure if it counts that I stick my tongue out on purpose, I think my dogs tongue just hangs out.)  I don’t think my ears are nearly as big, or my nose for that matter, but we definitely have the matching hair color thing going on.  By the way, my GSD’s name is SNUFF.

My other dog is D.O.G. (not dog, but each letter individually, D.O.G).  I think she thinks her name is MOVE, GET OFF THE COUCH, and YOU’VE GOT TO BE FRICKING KIDDING ME, though.  She looks at me whenever I say those things so maybe, poor D.O.G.

dog soloActually there is nothing poor about D.O.G., she is spoiled rotten. She is allowed on my bed, she gets lifted into the car, she even sits in the front seat, and for being the smaller of the two (three if you count me) she is the ruler of the “bitches”.

cats

 

 

I will save the discussion of my three cats for another day, but Foxy, the white one, rules the whole house.  As usual I digress….

So about D.O.G…..

I have always been an animal lover, but the last dog I had was hit by a car, and killed while a friend was “petsitting”.  (That was almost 15 years ago.)  It took me seven years before I could bring myself to get another dog, and the initial reason I got her was for companionship when my MS put me in a wheelchair.  Over the years, we have become codependent.  I don’t like to sleep without her and she doesn’t like me leaving the house without her.  So I guess it works?

dog and mom
Isn’t she cute?

OMG am I ADHD!!!  The point is, do I look like D.O.G?  If you ever saw me “precoffee”  I am sure I do.

I love how her teeth are spaced like that!  And ok maybe we both have a face that only a mother could love 🙂

So that’s it!  That’s my life in a nutshell.  Beautiful children and animals, coffee and cigarettes, and lots of horrible prescriptions for a nasty monster of a disease.  MS really sucks!my life in a nutshell

When I was telling a friend about the do pets look like their owners meme, she says, “Oh yes, I can totally see you and snuff…..you even cock your head to the side like she does when someone is talking to you and you don’t understand”…..SMH FML and all that.

Thank you all for reading along.  One day I will actually get to the point of why I started this blog and talk about how to cope with MS, depression, ADHD, etc, but for now I am having so much fun meeting new people and those things just plain suck to think about.

Do you have any pets? Do you look like your pets? Do you know anyone who does?  Please feel free to share them to my facebook page if you do.  🙂

 

 

 

 

Oh NO, ANOTHER POST about Tysabri

Actually, it’s not really about Tysabri, but I do want to talk about it for a minute.  ( Which we all know will be 700 words about Tysabri)….Well maybe not, I’m still “precoffee”.  Anyway, I digress…Yesterday and this morning I received numerous texts and messages wishing me well and seeing if I was ok because it was Tysabri infusion day, and to be honest the drug does “kick my ass” FOR A DAY.  Only for a day.  Before I started it, MS was kicking my ass EVERY DAY!  Ok, I was letting MS kick my ass everyday, either way it is only for ONE DAY.

I slept all day yesterday.  (Well my brain did.)  There is evidence that my body attempted to function because their is a full ashtray by the couch where my cross- stitch sits.  (Somehow more of that is completed too?!!?)  My dogs, aren’t completely up my ass so I must have fed them too… Einstein ate (Evidence of an empty bag of CHEEZITS is on the floor next to his desk)….smh

My tummy isn’t rumbling, so I must have handled that too.  THAT is actually the reason I am writing this morning.  There are so many worse things in the world.  I am not hungry, I have a roof over my head, my kids are healthy, and I am fortunate enough to still have both of my parents in my life.  The point is THINGS COULD BE ALOT WORSE.  Losing ONE DAY a month to treating MS is so much better than the every other night shot, followed by a day of fever, chills, and vomiting.  I’ve GOT this!  (and apparently a day of catch up)….lol

no coffeeI have been waiting for coffee the entire time I rambled this only to find that the coffee machine (ok ok Espresso machine) is broken.  OMG IT WONT TURN ON!!!! No pretty blue lights (YES IT IS PLUGGED IN)  The button won’t even push…..GRRRRRRR… OMG, Now I do need help!!!!!!  DOES ANYONE DELIVER?!??!back up coffee

HEH!  Anyone that knows me in real life KNOWS I have a back up plan, and a back up coffee maker, and a backup pack of cigarettes…and and and…. But Seriously, My Espresso machine is broken and I do have to play “catch up” from yesterday while attempting to function on 1/4 of my daily caffeine intake. 😦

I hope everyone has a fantastic day today and a great weekend 🙂

If you happen to have any free time, please send or deliver coffee.  OR… stop by My coffee pinterest board and add your favorite pin or post it on my Facebook page?  Have a Great weekend everyone! 🙂  See you next week!

Photo credit: http://www.capejava.com/