Where to begin

So much time has passed and so many things, strange things, beautiful things, weird and wonderful things have happened.  Maybe so many that I found I could not possibly put it into a post.  Just couldn’t do it.  Thought about it.  Wanted to.  Was afraid to.  Didn’t know where to begin.  But as I now face a new chapter in my life I think I’ll try.  Maybe a few pictures will help explain where I’ve been. 

 

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Maui for a beautiful wedding, sorry no wedding pics.

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Trip to Santa Barbara with the little birds.

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Trip to the desert.  Oh What A Night!!

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A Graduation!!  Woohoo we made it. Last one done!

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Back to Maui because it’s graduation, because it’s our new favorite place, because I will find any excuse to go there.

 

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To Mammoth for a last Girl Scout hurrah. 

 

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Back to Mammoth to visit one of my birds.

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And now that the little birds have grown and flew away leaving me with an empty nest it’s just us – and dogs.  And now I’m tired just thinking back at all the events of the last year plus, so with that I’m going to sit down and relax – because I can.   

 

Princess Bonnie Bell Bubble Gum

 

Yes, that’s actually her name.

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Bonnie is the new, well sorta new since June, addition to our family and I think she already knows she is a Princess.

 

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Have you ever tried to get a picture of a puppy, bribery has to be involved.

 

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Hey mom where’s my treat?

 

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She’s a real goof ball.

 

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Learning how to roll over.

 

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She already knows how to lay down, dance, and roll over.  Chihuahua prodigy maybe?

 

 

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Bonnie working the pose.

 

 

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This little princess has won our hearts over for sure.

 

 

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Such a sweetie!!  How can you resist those ears?

 

Embrace the Suck

 

It’s been a little over a year since my life changed.  And I’m okay, wasn’t sure I would be but I am.  And when I say okay, I mean, just okay.  Not great, I don’t think I will ever be great again.  When I forget that I have this stupid thing and I feel normal and no symptoms are jumping at me screaming “YOU HAVE MS” then I might pretend I’m great.   Then something reminds me that I do have it and I’m not who I used to be, then I’m just okay again.

It’s hard to remember that this is not happening  just to me but to everyone around me who knows.  Everyone is affected and I want to be sensitive to them and not put all my negative thoughts on them.  There are times when I want to scream and run away and punch something because I’m angry.  Then I’m like “seriously, where are you going to run away too?”  Nothing can make it go away, I could drown my sorrows in a bottle but what good would that do?  When I sobered up it would still be here.   So the best thing for me to do is to just fight it head on and keep doing my best.  When you see me and I act a little crazy just know it’s because I am.  I have this constant war raging in my head that wants to be sad, mad, pissed-off and strong, logical and calm.  That’s why I call myself a warrior, I’m in a constant battle to fight this thing, mentally and physically.

A year later and all I can say is that this is just like a roller coaster, up and down, that’s the only thing that is predictable about MS.  Then again, isn’t that true about life for everyone?  I have a few sayings that help me, one is, ‘Everyone has something’ and ‘It is what it is’  but this is definitely my new favorite   ‘Embrace the Suck!!‘    When life or a situation sucks, embrace it and let it motivate you to excel.  For all my sounding really negative – sorry about that – things have changed for the better.  Like losing weight, getting in shape thanks to an extreme workout Krav Maga class, and trying to reduce stress – key word – trying.  That’s the toughest one for me.

It does help knowing that everyone has a battle they are fighting, we are not alone in that.  We are all warriors, fighting the hard fight.  Take care everyone and keep fighting, it’s worth it, we are worth it.

D

A Bit of Reluctant Gratitude

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Now that I’m done with my tantrum, or at least for this minute because it seems to keep rearing it’s ugly head, I do have a few thinks I’m grateful for.  And these are the things that I really have to keep reminding myself of.  Not that my situation gives warrant to reminders of gratitude, we all have to stop to count our blessings at anytime or any life situation.  However, when facing a diagnosis that is permanent, as in, for the rest of your life, it makes your thoughts change and your perceptions change.  No matter how bad life is there is always something positive if you look hard enough and open your heart enough.

First, I am so so thankful for my supportive family, my husband who is still on this crazy new change of diet with me and my kids who are willing to try any meal I put on the table.  My extended family who has been sensitive and offers much needed words of comfort and kindness.  My mother who reminds me that I am strong and can do this, who has experience with a life changing diagnosis as well.

Living in southern California is a plus.  Lots of restaurants who have gluten free, dairy free, vegan options.  Great supermarkets that offer many choices to meet the needs of all dietary restrictions.  Love that I can go to a pastry counter at Jimbo’s or Wholefoods and find some sweet treat that I can have, makes me feel not so left out.  Lots of organic and non-GMO food choices as well.

Being able to plant and grow my own vegetables even though its October!  Just planted garlic, onions, shallots, beets, radishes and herbs.  Still working on filling the beds but it’s a great start.  Again, love living in So Cal! Losing weight!! Who doesn’t love that?  However, now that I’ve found so many great food options my weight loss has slowed down.

Not having headaches all the time.  So weird, I use to have headaches all the time, have my whole life.  Now I have them just about once a month and I think it has to do with that time of month.  So I am learning new things about my body that I just didn’t pay attention to before.

The internet!!  This is a plus and a negative thing.  I’ve been able to learn so much about MS through the internet.  So much information out there to help me get this thing figured  out.   But when I start to do to much research then I get sad because of all the stories of struggle from other MS sufferers.

Bloggers!  Bloggers who have opened up and shared there stories and there talents.  Meaning, cooking talents.  So many great recipes on line that gives someone like me hope.  Although, as I sit here with Ina Garten cooking up some seriously fabulous looking French food on the TV, I’m inspired to try those recipes only tweaking them for my needs.  And I’m only able to think this way because of the great trail blazers of gluten free cooking bloggers.

Twitters!  Strange, I know, but there have been some very supportive MSer’s  who have given me support through twitter. Social media, who knew!

 

D

 

My MS Rant

 

 

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Just a warning and an apology up front.  I HATE MS!!  HATE IT!!  It’s all I can think about.  It has consumed me.  It fills every thought every day and every night.  MS SUCKS!!  I have no hobbies anymore because this has become my hobby.  Every new muscle twitch or every new tingle makes me wonder if it’s going to be a flare up.  I feel like a walking time bomb waiting to go off in the form of an exacerbation or an episode.  I can’t stand it!!  I’m constantly wondering if I ate the wrong thing or if I got too stressed or am I taking the right supplements.  It’s making me crazy.  I can’t enjoy life because this is my life.  It pisses me off that this is my new life.  It pisses me off that I have to be my own doctor, that I have to do the research to find out what’s good for me and what’s bad.  Every ‘MS Diet’ claims to be the one that can put this in ‘remission’ to get rid of my lesions, and they are all different.  So WTF?  Which one??  Going out to eat is a joke.  Yea, there are things on the menu that I can have but still, really, grilled fish and veggies, always. BORING!  God this sucks.  I love food, I love to try new food.  I enjoy food,  and now??  Veggies all the time, UGH!  Yea, I like veggies but ALL THE TIME???

It’s a constant battle to be positive, to stay optimistic, to be open to this new way of being.  It in itself is stressful.  It’s stressful to constantly fight this battle.  What’s really stressful is reading what other people are going through and wondering how much longer before that happens to me.  What day will I wake up and not be able to walk or not be able see?   What will my future hold?  There’s no cause and no cure, so I don’t know if what I’m doing will even help.  I know that I have to try everything I can that might work.  And I will.  I will keep trying and I will stay positive and I will fight this stupid, ugly, mean, disease.  But that doesn’t mean I have to like it!!

 

D