Pain

Please read my friend Dawn's recent blog about Pain:  http://thebreakoffdawn.blogspot.com/2010/03/unpleasant-feeling.html

It's a great look at Pain...and not just Masto pain.  Dawn speaks about her courageous sister Lori, who battles Fybromyalgia.  I have a special person in my life who has it too, and she's is filled with the same kind of strength, personal resolve and stubborness to not let 'it' win.  So Dawn's post just about sums it up.  Eloquently, succinctly and yet remains filled with hope.  Hope and determination are two qualities that living with chronic illnesses solicit in us.  Sure, there is a certain amount of personal wallowing and 'whoa is me' we have to wade through to get to Hope and Determination...but it's doable.

The strength that we manage to summon, when there are truly truly dark days when the pain is so bad that you just wanna curl and up and die, is blessing and a stark reminder that we ARE capable of the good fight even when we're down and out.  However, the love and the joys/blessings that good family members and friends bring to our lives is part of an undeniable and much needed support system that helps us remember that in our fraility today, we CAN keep going...and that we are not alone in our fight.  So, Lori, thank you for being there for Dawn.  (in no particular order....) Mum, Dad, Auntie Pam and Uncle Pete, Mimi, Ant, Dorrie & Al, Simon, Nicole, Cousin Lauren, thanks for being there for me; Dawn thanks for being there for me; (in no particular order....) Julie, Celeste, Mark, Tom, Kevin, Allie, Emma, Cheryl, Carrie, Lesley, Leslie, Drea, Barb, Lori (I have my own special Lori), Tim, David, Sherry, Grant, Dan, Heather, Chrissy & Kadence, Jane, and that incredible group of Masto Sisters I've met on Facebook (sorry, it's 2 am...my brain is about to turn to mush....) THANK YOU. 

I'd love to tell Masto, that naughty little boy, that he needs to go stand in the corner and leave the rest of us alone.  However, the pain and insomnia are too strong tonight, so I'm awake on here and am reading biochemistry books in the hopes that I will konk out soon.  Please read Dawn's post.  It's a good one, and one I'm sure we can all identify with.  Pain bites.  Chronic Pain is...brutal.

Hoarders

Feeling a wee bit better than yesterday's glumdom.  Roller coaster, eh?  I find being productive helpful.  That is only doable on days when my body is co operating, which thankfully, it's mostly been doing lately.  SO, my mantra is 'enjoy it while you've got it'....

It feels like a big accomplishment when you get another coat of paint on a room, or sort a cupboard or box on the porch out.  Now I have 3 boxes of stuff to go to GoodWill and need to convince my husband that we need to put it in the car and he needs to drop it off.  We watched "Hoarders" last night on tv.  It's UNBELIEVABLE what messes people will live in and the crap that they acquire...oh, and then I look at the corner of the family room, which is a cupboard full of computer components and projects my hubby intends to do one day; a couple of boxes I intend to sort out one day and then....there's the filing cabinet.  I emptied it just before Xmas, and got rid of another filing cabinet that I had felt the need to start and fill at some point . Sorting it felt good BUT there's still work to be done on it.  Got the living room, kitchen and the movies all sorted (and purged) recently too.  THAT felt good.  It's like you almost can't breathe when you acquire THIS much stuff. 

What struck me about the people on that tv show last night was their reluctance to let go of 'stuff' and the psychological warfare going on inside them as 'organizer's came in and tried to help them purge it all.  I said out loud, more than once, "MY GOD, HOW do people live like that..." and then looked outside at the porch.  My husband was quiet through the show.  I reflected on my years of doing exactly what these women on the show were doing...filling the void in their lives with 'stuff'.  I spend a LOT of time at home now, and  am having to live IN this home more so than ever before (working full time, I found I was coming home, cooking, doing laundry, getting the kids sorted, wipe the shower down while I was having a shower, and collapsing into bed...doing the same all over again the next day; THEN going out on the weekends to avoid being IN this space....) So it was a few scant months ago that I realized how much I hated being in it.  It's not the house.  It's not the farm.  It's not my husband.  It's not the kids.  I was suffocating beneath ALL this crap we have acquired. The differences might not be noticeable to outsiders, but it's getting there and feeling better to me.  I have purged (and asked my hubby and Muminlaw and neighbour to drop off to GoodWill loads of stuff, and have thrown away loads more.)  MUCH more work to be done.  And, I can breathe in my kitchen, living room, bedrooms, and family room now. 

"What do you think?" I asked near the end.  "I think they're ill..." he trailed off.  "Ya know," I added, trying to be tactful, "our driving shed and porches look like that, eh?"  He then attempted to redirect the conversation, as he is oft want to do when we are discussing him.  "Your mother shops like that woman acquires crap,"  he said abrasively. "Yes she does," I replied, "nice diversion tactic...." He laughed.  "We seriously have to clean that driving shed out come spring.  I'm working on the porch right now..." I finished.   He agreed.   

"Hoarders" is a great show to come to some well-needed self-realization.  Extreme, it might be, but it's easy for us to sink into 'picking up bargains' at garage sales or 'intending to give a project a little TLC so that you can turn around and sell it or use it'. But, like we saw on that show last night, it doesn't take too long (heck years fly by once you have kids...) for that stuff and those intentions to pile up to unfathomable messes and clutter.   

This is where it's good to take a page out of my Inlaw's book.   My motherinlaw doesn't bring anything IN to the house without something going OUT.  I took offense to this at first, as I watched sweaters we'd given to her at Xmas going to GoodWill/Salvation Army (my own insecurity rising..."omg, she hated it...")  Her sorting out every few weeks IS sagely and IS the right thing to do...otherwise you end up with boxes and boxes and boxes of crap that you intend to wear, or give away or deal with later, but never do.  My Muminlaw strikes while the iron is hot.  I've come to see the wisdom in this.  We can't keep EVERYTHING.  It's just STUFF.  And I think I might have mentioned before that my motherinlaw keeps a pretty tight ship at her end.  Her approach to 'stuff' works.  So, while I might not have grown up learning this, I ain't too old to learn.  My fatherinlaw too...that man is amazing.  He starts a project and finishes it.  He sees what needs doing, and does it.  He doesn't put off today what can be done tomorrow, he gets it done today (or started).  Our friend Darrin, has a Grandfather, who is much the same way.  He keeps his body and mind active by completing projects.  Those men are rarely down in the dumps, glum or feeling sorry for themselves. Tired, maybe.  But tired, from completing a job or project is a good tired.  And they always find time for a crossword or a good sports game, or whatever makes them happy. 

SO...I figure the porch is a good project to keep me busy, while I wait for spring, and to keep my soul from sinking too far into glumdom.  A bit more paint and my daughter's room'll be done.  It's important that I also see the value in spending time doing these things.  I'm not STUCK at home; I have the time to tend to my home, so I should use it.  It'll keep my mind and soul busy, and uncluttered.

So while these cells in this body are behaving, let's get'er done.

Stuck

I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.  

I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period.  It's hard to breathe when you feel this way.    I feel so trapped that I don't even have anything insightful to write about feeling trapped.

I know what I want, and it isn't THIS.

I want to be well.

I want to wake up every morning knowing it's gonna be ok.

I want to never have to call an ambulance ever again.

I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.

I want to drive a car.

I want to be able to take myself out for breakfast on a Sunday morning.

I want to never feel those all over 'body migraines'.  Pain sucks.

I want to sleep peacefully, without pain, anxiety or restlessness.

I want to never feel like a bear or 10 tonne boulder is sitting on my chest.

I want to be itchy free.

I want to be full of abundant energy.

I want my tongue never to know what tingling or swelling is.

I want to go a whole week without vomitting and gut pain.

I want my children to have their Mother back, in ALL capacities.

I want my husband to have his Wife back.

I want never to need this kind of cocktail of drugs just to keep me out of hospital.

I want white skin that never blotches or flushes.

I want to travel.

I want to take a bus, train or plane without fear of anaphylaxis.

I want to deal with paperwork that has nothing to do with ME and this failing body.

I want to be able to breathe all day, every day, without restriction.

I want to feel useful.

And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it.  And I want to stop wanting that because it can't be healthy, productive or useful.

I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...

I want to stop explaining myself to people.  Explaining Masto is exhausting.  My God, there are soooooo many other beautiful things to talk about and think about.

And, finally, I want to be free.  

Stuck is a lonesome place to be.  And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.

See...stuck.  The roller coaster of Masto...up, down, up, down, up, down....

home-grown Hero

Last night, my daughter was quite sick.  A tummy flu bug that's hitting all the neighbourhood little people. This afforded me night watch nursing duties and the opportunity to snuggle with my barfing babe.  During one of the interludes when she wasn't wretching into a bowl or a large saucepan, or screaming with gut pain, she gently turned to me, held my head and out of the blue, said:

"Mom, you're like Rick Hansen."

"I am?" I replied, quizzicly (and wondering if I should check her temperature one more time...which had been normal, despite all the tummy trouble.)

"Yah," she replied, "DID you know that Rick Hansen lost the use of both of his legs in an accident?"  I nodded. "Yah, well, he did.  He woke up to find he couldn't use his legs and his doctors told him he'd be no use to anyone ever again because he couldn't use his legs! And you know what he did?  He didn't believe them, he said "NO!" and he got right up and got in his wheelchair and he started wheeling across the country.  When his doctors told him he wouldn't walk or doing anything ever again, you know what he did?  He said, "No, I'm gonna carry on!!!" and that's how you're like Rick Hansen, Mom, because when your doctors told you that you had Sys, Systam, oh, Systemic Masotosis, no Systemic Masto..cy...TOSIS, you know what I mean, you got right up and said, "NO, I'm gonna carry on!!!: You didn't sit down and cry and feel sorry for yourself and think it was all over.  Nor did Rick.  And you do, you keep trying to do 'normal' stuff that other people do even when you can't, but you try, and you try to make life as normal as you can.  So, I think you're just like Rick Hansen because you both were told by doctors that you can't live your lives the way you want to and both of you said "NO! I AM going to live my life the way I want to."  So Mom, you're like a Masto Hero just like Rick Hansen is a parapalegic Hero.  Your my Mommy Hero!!!"  And she squeezed me like she was loving me to the moon and back times infinity to googleplexes and back.

I was speechless. 

Grateful

Christmas is a fairly insulated time in our lives.  Curled up at home with family and children who can't wait to open their presents, Poppa makes Christmas Breakfast with the boys, and then later we get those first whiffs of Christmas Turkey and then, even later, we gather at the table to delight in a feast together....ummmmmmmmmm, does it get any better than this?  I find myself very reflective this time of year.  Winter adds to this insulating effect.  So, I thought I'd list some of the things that I am grateful for.  I invite you to share what you are grateful for too.

Family and Friends, who accept you, warts n'all, for who you are, in your current incarnation and are willing to grow with your changes.  You know who you are.  I love you.

Family and Friends, who I accept, warts n'all, for all they are, in their current incarnations and in their ever growing changes.  You know who you are.  I love you.

An amazing, thoughtful, encouraging and strong man in my life.  Thank you for choosing me.  I love you.

Two incredible, delightful, talented and beautiful children in my life.  Thanks for choosing me to be your Mum.  I love you.

My Parents.  Thanks for having me.  Thanks for giving me life and helping me to become the woman I am.  I love you.

My Inlaws.  Thanks for having me...in a different sort of 'have'.  Thank you for bringing me into your fold and your lives, and for being such amazing role models of parenting, love, support and guidance.  You are dream Grandparents to these children that we love.  I love you.

Systemic Mastocytosis...which, despite all of it's drawbacks, has brought some INCREDIBLE people into my life, all over the globe, from all walks of life and created some wonderful support networks, constant sources of strength and encouragement...AND they let me do this for them too.  Soooooooooo good.  You know who you are.   Ok, I can't really say that I love SM...but if you have to have it, I can't think of a better bunch of folks to have it with.  I love you.

The Farm.  While we haven't managed to acheive all of our goals in living and learning on this little piece of heaven, we have made some magic and I've learned some valuable lessons in limitations and in living.  Without this experience, growing food, loving our land, fixing up this old farmhouse, raising our children in the middle of nowhere, tending to and losing more chickens than I care to think about and learning to live as part of Nature's life cycles (prey/predator), I have a greater appreciation and passion for food that we 'know' and for doing whatever little bit of whatever it is that we can do to live a bit more simply.  Convenience is costing us all our health and our families.  The price on convenience is too high.  So I am grateful for these valuable lessons.

The pile of garbage on my back porch.  This pile of blag bags and recycling has taught me that we purchase waaaaaaaaaaaaaaaaaaaaaaaay too much crud with waaaaaaaaaaaaaaaaaaaaaaay too much packaging.  It's not until you actually HAVE to wrap up your rubbish and take it to the dump or disposal centre that you realize that we must do something about HOW much garbage we produce in the world, and the purchasing choices that we make.  I don't love you.  But appreciate the lesson.

Charlotte, our dog.  There are a few simple life lessons to be learned from the family dog:  there's no such thing as too many cuddles; fresh air and a morning walk daily soothes the soul; carrots taste great, raw; spending the afternoon in the river/lake is one of the best things in the world to do and NOT to give it a second thought; sitting up front in the canoe, listening to the stillness of the river is one of life's most beautiful and precious ways to spend some time with someone you love.

Family Guy.  I feel soooooooooo guilty everytime I laugh, but I laugh.  And laughing is medicine for the soul.

Sleep.  A necessary evil, but my God, what an amazing thing sleep is.  I never appreciated it fully until I wasn't getting enough of it anymore.  It's amazing HOW much grief lack of sleep causes my body (and others...)  So sleep, I love you.

Abba.  I'm still a Dancing Queen at heart.  Moves my soul.

Seguin Fire Services and Parry Sound EMS...they've responded to my house sooooo many times this past 2 years.  While I often feel better by the time they get here (thanks Epi!), I'm never out of the woods when they get here, and they have saved my life numerous times.  Empathic and wonderfully warm, this amazing group of people always approach me with dignity, care and warmth...and even make me laugh in the face of emergency.  Incredible.

I know there are many more things that will come to mind, as I sit here feeling grateful.  So, perhaps I will add them as they pop up too.  For now though, thank you for sharing this time with me, and I look forward to reading some of the things for which you are grateful.