Newly Diagnosed with MS

~ msgracefulnot ~ 15 Comments

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!

 

 

Plan for the worst, hope for the best

~ msgracefulnot ~ 12 Comments

Last week, as I was planning for the rough road ahead, I wrote and scheduled several blog posts in between packing.  ( I really do have a lot of shit…smh)

I  believe in planning for the worst while hoping or planning for the best.  ( I assumed I will be too emotional and busy packing to focus on keeping up with my blog and maybe too drugged from surgery)  So, tomorrow I have a video post coming out about Advice for those newly diagnosed with ms and a video about how I was diagnosed with MS (previously recorded of course).  I have asked a few fellow bloggers to add their advice and stories as well in the form of guest posts during the following week.

The bloggers I have included have been more than inspirational to me during this “rough time” WHILE still dealing with their own MS issues.  Please come back and check out their posts, and if you have time their blogs as well.  If you know anyone that has MS or another chronic illness, these guys are GREAT sounding boards and examples of how to make it day to day with MS.

Let me repeat, I AM NOT LEAVING THE BLOGGING world, I just don’t want to set myself up for failure or lose any progress I have made scheduling posts etc.  I have met so many wonderful people here in the blogging world (one positive addiction) that I know I will  be checking and responding to comments.

AND…. On the positive side, Thing 1 is getting married on March 10th, family is coming in from out of town, my Boston Trip is coming up…busy busy busy 🙂

Please check out my post and videos that are coming out tomorrow, and if we aren’t able to “Catch up” ENJOY YOUR WEEKEND!!!!!

The Elephant in the Room

~ msgracefulnot ~ 16 Comments

I have never really written about “the elephant in the room”  (My relationship with Einstein), because to call it complicated is a massive understatement.  Sure I’ve made passive aggressive remarks, such as calling him Einstein because he THINKS he knows it all, but I’ve never given a back story.

I have called Einstein many names over the years, the most recent name being Einstein.  I would like to talk a bit about other names I have used when referring to him as well.

The very FIRST NAME I ever called him was “OMG look at that GUY!”  (I was 13 years old and for me it was love at first sight.)  Over the years, I have called him honey, sweetie, baby, loml (love of my life), various bedroom names,  you name it.

More than my Baby Daddy.

When I was 17, he became my “baby daddy”…eww I hate that name, I don’t hate that he is Thing 1’s father, but the whole “baby daddy” thing doesn’t quite cover what he is or was to me.

As the years passed, the names I called him became less and less friendly…asshole, dipshit, HIS FULL NAME. and then finally my EX when we split.  (The first time, the second time, and maybe even the third time.)  Maybe by the 40th time we broke up, I think I just stuck with MY EX…. I don’t remember…the point is, we have been on and off again for 30 years.

We have been apart for years at a time.  I even had another child, got married, left my husband and again ended up with Einstein. All this time I have told myself that I do what I do because I love him.  All of  those years ago, I gave him my heart, and I don’t think I have ever gotten it back.

Our “current” back together has lasted for almost 7 years give or take a couple months if you count several days of not talking to or even being able to look at each other.

The problem is we are NOT good for each other, I daresay we are toxic to each other.  THERE I said the words…… so pack up and leave right?

Why isn’t it that simple?  Why do I make this so difficult?!?!?  I keep making excuses that I have no where to go.  I have too much shit to pack etc etc….well I will just wait until our daughter gets married.  Excuses excuses.  Logically I can say those words, they are just excuses Grace, so why does actually leaving make me paralyzed?!?!?

The thing is I do love him and I want him to be happy, but not at the expense of myself.  I have never imagined my life without him, and it scares me.  Actually it terrifies me.  But I am feeling it in my body.  I am feeling the effects that this roller coaster is causing in my ability to walk, to think, my sleep, and it has to stop.  I have started to view him as my Nemesis…..so here I am….

Packing My bags

As I begin to pack my bags, yet again, I wonder…. maybe he is an addiction? Maybe it’s not love after all.  Being with someone shouldn’t  drain you of all of your energy.  I am either on cloud 10 or I can barely move because I feel like my heart is broken and I can’t breathe.  Words like co dependent and narcissistic  seem to describe what I think/thought was love.  This has been “our song” for years… Pink True Love

Can I please get off this roller coaster now?

 

 

 

McDonald’s “curbside ordering”..wtf?

~ msgracefulnot ~ 17 Comments

This is just wrong on so many levels!!!!!!

I am literally still  smh (shaking my head) at this one…smh

I saw this advertised at McDonald’s today while I was in the drive thru.  Let me give you the back story before I start my attack on McDonald’s.

I am moving into a place that I believe has mold behind the ceramic tiles in the bathroom.  Not wanting to deal with mold in any way shape or form, I decide better be safe than sorry, and just rip out the ceramic tile around the tub.  (yah it will give me something to do to occupy my mind too) Doing physical labor has always been a great stress release for me.

So I headed over to the new place this morning, tools in hand and started work on the tub.  I had my safety glasses on, a mask for dust, broom and vacuum ready for post cleanup.  I had the first wall taken down without issue, and decided to take a clean up break so I didn’t fall on the tiles.

duringI forgot the damn gloves….smh.  I cut my hand on the tile, and I know how to bleed….What a mess!

I finished the remaining walls, swept up the area, but my finger was still bleeding, so I decided to give it a rest.  On the way home I stopped at McDonalds for a fresh coffee.  I used the drive-thru because it’s convenient, though I could tell you I didn’t want to walk in with Blood everywhere, truth is I am lazy.

While waiting for my coffee, I saw a new advertisement for curbside check in ordering.  WTF?!?!?  How is this good or helpful on any level?!?

  • Of course NO ONE would ever consider texting their order into McDonald’s while driving
  • It’s a great idea to mix cars and people in the parking lot!!!  I can already see someone pulling in while texting their order and not paying attention to the person delivering food to someone else.
  • How about all of the cars pulling in and backing out at the same time??!?! At least with the drive thru there is some semblance of order  ( although I have seen that get pretty dicey too)

Ok, I’m done bitching.  Can someone tell me how this could be a good idea in any way shape or form?!?!?  I really don’t get it…. Mentally, I am done for the day.  It’s funny I was telling someone on the phone earlier that it’s ok to just be done and take a break for a day, their issues, problems, etc will still be there tomorrow.  Now I am going to take my own advice and focus on the positive.

Before
After
nothing more than a paper cut

Today was a very productive day in spite of my minor injury…. (it really is minor)  Maybe you are starting to see how I got the name Grace?

 

 

Lately, I’ve been wearing a mask

~ msgracefulnot ~ 20 Comments

As I began writing this, the original title was “I’m a hypocrite”, and something like I feel like a fraud.

The last couple of weeks have been hell!

For those of you that “know me” thank you for being understanding when I didn’t feel like talking.  Every time I opened my mouth, toxic shit came out of it.  When I tried NOT to open my mouth, I gave myself a migraine and had pain everywhere.

vicious circleThis is a vicious circle because after I say something mean or bitchy, then I have to apologize for being a bitch.  (Trust me I have to apologize, because it makes me feel like  a complete asshole when I can’t control my mouth or  my attitude.  Then,  I am so guilt ridden and and and. you get the point right?)

What do you mean last week was hell?

You posted multiple times last week, and they were all “silly” posts.  (Yah for the hidden power of scheduling your posts ahead of time)  To tell the truth, I spent most of the week crying, sleeping, or wanting to sleep.  When I woke up in the morning, if I had managed to sleep through the night, my body was on fire.  I had a migraine every single day, all day.

Saying “I’m fine” when you really are not

Instead of reaching out for a shoulder, I gave the typical “I’m fine” response.  I tried to make jokes, I tried to deflect.  I KNOW this is the WRONG way to deal, but it’s what I did.  Now I feel like a “fraud.”  ( I truly didn’t TRY to deceive, the posts were previously scheduled)  Many of you know that I’ve had a recent and tragic death in the family.  The grief was further exacerbated because I was going through slump week for my Tysabri infusion.

What I haven’t talked about is The Elephant in the Room.  After 30 years, I believe the Grace and Einstein roller coaster is out of commission and it’s hard, really fucking hard.  I am working on a piece called, The elephant in the room that may shed a bit of light on the REAL all time consuming issue in my life.