Thank you for your support

Earlier this week, I hope you saw the wonderful guest posts by Steve Markesich @ MSich Chronicles, Alyssa @ fightmsdaily, and Alex @ MS with Ms Alex If you missed their posts or have not seen their blogs, please take a minute to check them out!  These people are not only positive inspirations to those of us living with Multiple Sclerosis, but for me they have all become friends outside of the blogging world.  Alex and Steve have heard my tears, and offered their support and encouragement on numerous occasions.  Alyssa sends me frequent messages ‘just checking in’.  It is SO helpful to know that you are not alone when you are struggling!!!!!

Hope for the best, but plan for the worst

Something that MS has taught me is to try to plan ahead…to prepare for the worst, while hoping for the best.  I knew that this last week was going to be difficult for me: recovering from my own surgery, taking care of my father while he recovered from his surgery (which was cancelled and rescheduled), packing and moving, slump week, etc etc, so I reached out to my friends and asked them for “help”.

Asking for help is so hard

Even when I write about “not fun” or painful subjects, I try to keep things “humorous”. I didn’t want to feel as if I HAD to write something, so as hard as it is to ask for help, I am glad I did. (trust me if you were in my head with all the mood swings etc , you would block me, ignore me, or otherwise, cut me out of your life, so I decided to “remain silent”)   I won’t claim that  having my friends guest blog,  helped me FOCUS, but it did allow me time to try to wrap my head around everything that is happening, and to start getting “shit” done.

Better than I hoped

While I knew that my fellow bloggers would not disappoint with their pieces, I was surprised at the things that I learned from their writings.  I really wish I had Steve’s letter to himself (pre-Ms) when I was diagnosed.  It really is great advice!!!!! Alyssa’s Guest blog about the things she has tried for MS reminded me that we are all different, and that MS really is a snowflake disease.  (I’ve said it before, but it really hit home)  You have to fight for yourself, and what works for me, may not work for you.  Finally Alex’s post called the do’s and dont’s of MS, in which she shares how her “attitude” and sense of humor keep her going.  Alex is not only determined not to let MS define her, but she kicks ass for everyone around her as well.

THANK YOU again my friends

Thank you! Not only for taking the time to share on my blog, but for making a place for me in your lives, and helping me get through this rough patch.  I really did accomplish a lot, the worst events of the week were the alone time (when I was left alone with my thoughts)

tetris in a car BUT each day, I filled my car from floor to ceiling (hindsight says that was probably not the smartest way) and drove to my “new” place and unloaded my car.  Some days I even managed a second trip.

To “keep things interesting”, let me add that this move is  “double duty”.  Before I could move anything in, I had to begin emptying and cleaning the things that were left behind including the the ceramic tiles and tub from a bathroom.  But YAH, I am making progress!!!

Please put more on my plate?!?!

When you are making “to do lists”, it is important to prioritize your tasks so that you don’t get overwhelmed, however, sometimes due to other circumstances ,or other people’s influences (which happens all to frequently for me) it seems that everything has to be done at once.

  1. My kiddo is getting married in March.  The date is picked, event is planned, and everything is paid for, now it’s a matter of waiting for it to happen.  (Which as that day draws closer will cause a whole new TO DO list to be created.) but for now I can let that rest.  My kiddo is hyper organized and I’m really just here to do what she asks of me and for moral support.
  2. Botox Surgery– Yah this date has come and gone thankfully, but I DID NOT expect the 15 lb weight lifting limit for 2 weeks.  (yeah that’s not gonna work for me)
  3. Getting off the Grace/Einstein roller coaster.  (My body kind of decided this one for me).  I have realized that when the heart and brain argue, it’s really the liver that pays for it.  I have finally figured out where I will be living, but not all the logistics of it yet.  It’s the fricking middle of winter Grace, GREAT timing!!!!…smh
  4. Planning my trip to Boston and blogging about it.  (This has been temporarily tabled for now.)  Airfare is purchased, and sleeping arrangements have been made and “paid for”.  More about that later though.  (I will get to finishing the posts about that but again, tabled for now)
  5. The newest, most pressing issue is that my father is having his shoulder replaced next week.  It’s funny, I have literally had over 40 surgeries in my life and for the most part, I take the procedure and recovery in stride, but I am losing my shit about my DAD having surgery.  I really can NOT handle my loved ones going through pain.  I would gladly take his place, ok well maybe not gladly, but if he could avoid it, I would certainly step in his place.

On a positive note, I have the time to be there.    I HAVE to be there.  As I mentioned before, I am always the patient.  I know the rules for that.  I know that I have to fast for at least 12 hours before surgery.  I know that I can’t wear make up, jewelry, deodorant etc.  I know most of the staff in the surgery center of my local hospital by name, and I even know some of their children’s names.  I know the drill.  But NOT this time.

My father’s surgery is being performed at their local hospital (an hour away).  I  don’t know the doctor, or the doctor’s abilities.  I don’t know the staff, I don’t know….oh my god I just don’t know.  I do know my role as a patient, but I don’t know how to be the one on the outside waiting.  Any advice? Please?

  • Update

Surgery is being rescheduled……. (at least I got the call before I drove all the way out there). Doesn’t make me any less nervous though

 

 

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!

 

 

Plan for the worst, hope for the best

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

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?