Feeds:
Posts
Comments

Archive for the ‘I have no words beyond this’ Category


I was crouched down on the ground
In a corner, trying to make myself small
Hiding my body, the scars, the bruises
Curled around myself as if the physical
Sensation of crumpling inwards, like a
Rose wilting, would protect my heart
Which felt like a thousand stab wounds
All fighting for which would make the
Biggest hole and let everything I am leak out

I was the colour of indigo on a blank canvas
Deep deep deep
I am the painting you want to look at, but
I make your soul ache because when you look
Past the first hues of blue, you see the black that
Lies under it all, see the absence of light

I was water. I was the enduring, pulsing rhythm
Of a force that would not be stopped. Or was
I the tears that just kept pouring out?

That’s what her body said to me, as she sat
On the other side of the room. Deflated.
Shivering with the adrenaline that ravaged
Her when words like arrows pierced
The delicate gossamer she is made of
Oh, she’d like you to think she is a warrior and,
She is, but she is also a butterfly. My butterfly
And I will not watch her be pinned to a board
And cased in glass. I will not.

But, that body shifted. It unfurled. It released.
And she?

She rose. She persisted. She soared.

Read Full Post »


Last Saturday the hubs and I drove north to Fredericton for an electrical stimulation demonstration. (TENS machines, etc). It was a great opportunity for us to meet some new people and learn about some new techniques in pain control.  Not for him, though, you don’t use those types of products when you have a serious heart condition.   For me, with recurring back pain and sarcoidosis, it was worth looking into.  

Discussion and demo started at six and ended juuuuust before eight and we had been invited to a friends house for nine.  Perfect, time to go have dinner together. 

We were both hungry.  We had left Saint John just around four and had driven straight to the venue.  I must also add that driving along the river in Fredericton is BEAUTIFUL.  Truly.  I’ll never get tired of how lovely the maritimes are.  And I loved that our hour and forty minute drive between two major cities in New Brunswick is so scenic.  Not like driving between major cities in Ontario at all. (Sorry-not sorry, Ontario) 

Anyway, we don’t actually know Freddy very well so we pulled over and looked in the GPS for nearby restaurants.  

Red Lobster.  Within minutes!  Sure it’s weirdly cliche for maritimers to eat there but, biscuits!  Shrimp!  Off we went.  However, upon reaching the spot where the GPS said it would be, there was nothing.  No restaurants of any kind. Nothing that even looked like it was once a restaurant.  Disappointed, we checked again.   Olive Garden.  Six minutes away!  I’ve never eaten at an Olive Garden but Shawn has. He immediately got excited by lasagna.  I did what I do best while navigating,  started a running commentary on every restaurant we passed, which admittedly, wasn’t riveting.  There was an Asian fusion place called Ko-To, a Thai place, a McDonald’s.  Six minutes later and no Olive Garden.  Same situation as with red lobster.  We drove around in case the GPS had merely put us in the vicinity of Italian food, or by this time, 8:30, any food but no. Gas station, optometrist, law office, pet smart. No restaurant.  No Olive Garden. No lasagna.  

We decided to go back to the Thai place. After all, we were due at our friends by nine.  And we were very hungry.  So, back we went.  We parked in the suspiciously empty parking lot and walked to the door.  Closed at 8 on Saturdays.  Closed at 8??? We were flabbergasted.  What restaurant closes at 8 in a weekend?  I turned to my beloved. Ko-To it is.  We got back in the car and started joking about how the city was conspiring against our hunger.  We pulled into the parking lot and the open sign was still on. Another sign pointed us to park in the back.  We drove around and parked beside the only other car. Looking behind us, I noticed that the restaurant was located on the street directly in front of a mini mall with a McDonald’s.  Ha ha, I thought. No homogenized burgers and fries today. 

There was a long ramp on the side of the building that wrapped around to the front door.  That’s nice, I remember thinking.  Wheelchair friendly.  JUST As we reached the top of the ramp, we heard a loud lick click. We rounded the corner in time to see the open sign get turned off. 

Because they closed at nine. Because Fredericton did not want us to eat.  Laughing softly through our raging hunger pangs, we went back and say in the car.  We watched seconds later as a lady came out the back entrance, got into her car (right beside us) and drove out.   We watched her drive right around and into the McDonald’s  lot behind us. Shrugging, defeated and famished, we followed.  Shawn and I ate our Big Macs and loudly rolled our eyes at one another over the terrible conversations by a nearby table of six teenagers.  Thn we went to our friends house for a great evening with adults. 

That was last Saturday.  And three weeks before that we came home from Ontario to my having to deal with a bad case of laryngitis.  No voice for four days.  

Last Sunday my throat was sore.  Monday it was very sore.  Tuesday myself and all three teens went to the clinic for sore throats and varying degrees of voice loss (and this is prom/grad week for ash).  We were given the once over and prescribed a gargle for our sore throats.  By last night just before I left work, I could not swallow.  So I went to urgent care.  Raging laryngitis.  I was told to stay home and not talk.  Naproxen for pain, and wait.  

So I’m home today.  I can’t talk and I’m frustrated.  Our middle daughter graduates high school tonight.  Im going to go, I’m going to cry, but I won’t be able to say a word.  

And that, my friends, is how I’m kicking off my holiday week.  

Good grief.  

Read Full Post »


I haven’t really commented publicly on the Orlando shooting at Pulse, but believe me when I say it has been on my mind and very close to the surface since it happened.  So I’m finally going to talk about it. Or at least, talk about why a mass shooting in a gay nightclub in another country,far away from me; a married woman in her forties with children and dogs and a husband, would matter so much.  

I have five kids.  If you read my blog, you already know this.  If you have read my blog for a while now, you also probably know my oldest daughter is gay.  Coming out wasn’t easy for her.  Not because of my reaction, her dad’s, her siblings, but…other members of our family can’t understand it and don’t accept it.  She got a lot of backlash at high school.  We lived in a very small town and believe me, being out there wasn’t always easy but, one of the things I admire most about my daughter is that she is beautifully herself.  Unapologetically.  Being authentic is a gift. She has it. Anyone who knows her knows how utterly genuine she is.  

My house is one where we talk about everything.  So, when she came out to us, the kids just took it as easily as if she had told them that actually, despite the rainbow of colours that have found their way into her hair, she is actually a natural blonde.  I mean, it’s still her. What was there not to accept? 

Ah but there were things not to accept where others were concerned.  Some of our family was not and is not so accepting.  And that pains me.  

We all know that there has been an extreme uphill battle for the gay community to climb.  And I’m embracing ALL of the community. Gay, lesbian, queer, trans, bi, questioning and anyone else I’m leaving out. There is a lot of ignorance and intolerance out there and that breeds fear and hate.  But I had thought, as most of us likely had, that we as a society have come leaps and bounds. 

And then.  The shooting. 

It’s too much.  

I was texting my gorgeous girl the morning it happened.  She lives in another province and I couldn’t be there to hug her, hold her.  She was looking forward to going to pride this year in Toronto.  She is not going now. Because she was going to go alone and now, well, without someone there with her to help her feel safe, she doesn’t want to risk it.  

Which is the saddest thing. She will be 21 next month. This is the time in her life when she should be going out to gay bars and clubs and meeting people and having fun.  

As I watched the Tony awards last Sunday night, I cried when Lin Manuel gave his speech and said “love is love is love is love is love”. Because that hit the nail right on the head for me.  

To everyone in the world who doesn’t get it. There is no wrong way to love.  There is no wrong gender to love. No evil way, no sacrilidgeous way, no broken way no hateful way, no sinful way. Love. Is. Love. 

Love is love. 

Say it out loud.  Love is love.  

And every single person on this planet is entitled to love in whatever incarnation it makes them feel loved in return.  How could anyone begrudge love?  

I hope the families of this massacre find peace in their days to come.  I hope the gay community finds new strength and continues to stand up and say WE ARE WORTHY.  I hope my daughter finds joy and happiness and love with a wonderful partner some day.  

And I hope the people whose hearts are still closed to a part of humankind find a way to open them.  Have your grinch moment and let your hearts grow.  Because, no one wants to threaten you, or put their relationship “in your face” anymore than you do.  They simple want to dance, without dying. 

They just want to love their lives and one another.  As we all do.  

Love is love.  We learned to love as children.  

So grow up.  

Read Full Post »


My parents arrive tomorrow for a few days’ visit. I’m actually really happy to have them come. Because they are leaving in a few weeks for a trip back to the motherland. Ireland. And shortly after that, they are moving back to Ontario. Yeah. I have no idea why either. If my own recent trip back to Ontario taught me anything, it’s that I don’t want to live there again and I don’t know why anyone else would either after they’ve had a taste of life in, um, I don’t know, ANY OTHER PROVINCE. I take back ANY time I have bitched out here about traffic or construction. We have it easy. We have it super easy.

What I *did* miss was people. Specific people. My daughter. Oh lord Keisha you are SO beautiful you don’t even realize. And seeing you happy, full of energy, settled, you have no idea how much that made me smile. I think the last time I saw you in such a good place, you were about 12. Maybe. I’m so proud and I really wish we could spend time together more, but at the same time I’m happy to let you live your life and just…fly.
Best friends Alex and Greig. I have no words. Three years were like three days. Because we just fell right back into our wonderful ways as if no time had passed at all. God I missed you.
My brother and sister and the new baby. Yes, I have two other sisters in Ontario and I didn’t get to see either of them, but new babies win. Always. And Saoirse is a dream. My eighth niece (I also have three nephews) and I’m sure, knowing our family, that we’re not done yet. I mean, I am done, but I still have two unmarried brothers and Ciaran and Angela are newly weds, I’m sure they’ll have at least one more. I just love the babies. LOVE

One of my favourite visits of the trip was seeing my grandparents. I love how my Grandmother is still so full of joy and laughter. I loved making Grandpa’s eyes light up at new pictures of my kids, their great-grandchildren. I love their cozy home and I just loved spending time with them. I miss that, living so far away. I don’t know how many more opportunities I’ll have to do it.

So I came home, out from the (not even kidding) 40 degree heat, to a brisk 12 degree, cool Saint John day and promptly lost my voice. Total laryngitis. I actually could not make any sounds for three days and even now, I’m still scratchy.

June is not cooling its heels though, and we are careening quickly through a season that has left me emotional. Aislinn, our middle daughter, is graduating high school in a few weeks. I don’t know, I’ve been through this graduation thing before, but, on different scales. Liam finished the way I did, through correspondence. Keisha finished through an alt high school and I definitely remember her graduation ceremony, and how choked up I was sitting in the auditorium with Shawn watching our baby cross that stage to get her diploma. But Ash is the middle baby. I have a mental picture of my kids: the “older two”, Ash, the “middle child” and (much to their eternal chagrin that I STILL use this term) the “little two”. If Ash is graduating, that means that really, for REAL this time, they’re all getting older. I have one kid moved out, another on the cusp and now Aislinn making plans for moving on and my beautiful big family is shrinking.
Believe me, I do know that it will eventually get to the phase where it grows again when they all start making their permanent relationships and having their own families. But right now, I’m in the midst of the emotional roller coaster of watching them grow, and letting them go.

I’m feeling my age. I’m searching for a cure to that.

Read Full Post »


It’s been a whirlwind month and a half since I first went to the hospital with my swollen feet.
There I was back in January with a small, sharp pain thinking it was plantar fasciitis or something related, just dealing with it when one night in February, I looked down and noticed my ankle was a little swollen. No biggie, I thought. I had been feeling pain in my left foot, so maybe I was unconsciously over compensating with the right. I went to bed and woke up without swelling.
But then it kept getting worse. And the pain shifted from under my heel to both my ankles, my knees and my feet in general. Finally the swelling and pain got so bad that I had trouble walking so one night, after my late shift at work, I went to the ER. 11 hours later I left with an appointment to see a rheumatologist. Dr. Grant.

Dr. Grant is wonderful. At our first visit, he told me that what I was experiencing was likely Rheumatoid Arthritis. Which was a hard thing for me to hear. He gave me a prescription for naproxen and a follow up appointment for a week later. We talked about all the other joints where I had sharpness or pains and we talked about sarcoidosis, which he felt was not to be completely ruled out, but, he wanted to wait and see what happened with the naproxen. To be safe, he sent me downstairs (his office is in the hospital) for chest x-rays and blood work. Well, I picked up my pills, took them home and started on it. Two days later the pain was worse and the swelling was WAY worse. My legs were one size, from the widest point of my calves, down to my toes. I could barely fit shoes on, even with the laces open as widely as possible. I called his office and he got me back in immediately.

That was a Wednesday. I went to my appointment with him that morning and showed him my feet, which now also had angry looking dark blotches on the skin. Then he looked at my legs, my knees, my fingers and fingernails and told me that my x-ray had shown that the lymph nodes in my lungs were enlarged. A classic sign of sarc. He did an ultrasound on my ankles and pointed out granulomas and swelling issues. He sent me down for more blood work, another x-ray and a ct scan with contrast as well as an ECG. Sarc, I was beginning to learn, is a scary ass disease. He also wrote me out of work for a few days because now I needed prednisone to take down the swelling and I really needed to be off my poor feet. I was fine with that, seeing as walking was so painful and I had been limping around work for a while.

The new pills took down the swelling and my next appointment the following week confirmed it. I had granulomas everywhere. In my joints, lungs, one in my BRAIN behind my EYES (I’m seeing an opthamologist about that one, and it’s likely the reason I suddenly needed glasses this year) and enough of a question mark around my ECG result that I’m being sent for an echo-cardiogram.

I may or may not have had a panic attack about some of this.

Here’s the thing about Sarcoidosis though, that I’ve learned on this complete whirlwind. It’s either going to be acute, and it will all clear up and go away, or it’s going to be chronic and I’ll have problems and flare ups for the rest of my life and NO ONE knows which until I finish my course of steroids and have things settle down.

It’s called “The Snowflake Disease” because it’s literally different in everyone it affects. It’s called the “it’s not cancer booby prize” because often times those granulomas are seen as tumors. It’s called the great pretender because it’s symptoms imitate: arthritis, lupus, chronic fatigue, hashimotos, fibromyalgia and many, many more illnesses. In fact, it’s not unusual for it to go along with any or all of these. The jury is still out on whether or not I also have rheumatoid arthritis with this, we simply can’t know until all the sarc symptoms are gone or under control.

My wonderful husband, who as most of you know, has had his own issues with sudden, extremely serious health/heart problems, has been wonderful through this. He has listened to me rant, he has listened to me cry, and he has listened to me complain. On our most recent date night, we spent a good hour discussing our respective health and how we feel about it all. Who knew that at 40 we would have so much to talk about in that department? Certainly neither of us did.

No one ever expects that they will wake up one morning and be sick for the rest of their lives. We simply don’t count that in the things that we worry about. There are far too many other things to worry about. But I can’t spend my days dwelling on it either. I have to make a choice every morning when I get up. Pay attention to what’s hurting today, yes for sure, but then, adjust, and move on. I have to CHOOSE not to live *in* the hard. I have to choose to let my hard just be a part of me and focus on what’s good. Or at least focus on what needs my attention more. Because there is always something that does. It’s the same mindset that I use when I’m having a bad day with depression. Or at least the one I work hard at using, some fights are better than others. We live in the mindset we allow ourselves to live in. Sure, I could give in to the self wallowing and eating of all the feelings and depression of it all. Sometimes I do just that. But I don’t want to live in it every day. I don’t want ALL my days to be defined by my illness. Because I am not my illness. I am just me.

So that’s it, folks. Opthamologist on May 3rd (I AM freaking a bit over this one, I have a phobia about my eyes being touched and an intense fear of what they may have to do) and echo cardiogram coming up sometime soon. Then follow up x-rays and likely a follow up ct to see if anything has shrunk or gone away completely.

In the meantime, work. Kids. Husband. House.

Life.

Read Full Post »


It was a dark and stormy night.

Actually, it was a stupid night after the first day of spring with a freak snowstorm and now it looks like full on winter again and I don’t like it.

It’s twelve thirty six am here. My husband is gently snoring in bed beside me and I cannot sleep. Could be the steroids. Could be my overactive brain. I’ve never been a great sleeper. I mean, I *was* getting good at it for a while there but then I got sick and went on steroids that can mess with your sleep patterns so there you go.

My room is too warm. Which is funny, because before his heart attack Shawn was a human furnace and liked it cool whereas I was always cold, but, we’ve done a switch because my body has already kicked itself into pre-menopause and I’m hot all the time and his new, post heart failure, on blood thinners body is now always cold.
Trade-sies!

I’m annoyed with my illness. I’m ever fearful of his. Who would have guessed that we’d each wake up one day at 40 and be sick for the rest of our lives?

That’s maudlin, I know. But it’s late and therefore the maudlin thoughts are the ones with top billing. My brain always did like to fixate on the negative. At least that’s what a therapist once told me.

I miss smoking sometimes. But I don’t miss the money it ate up, the smell of it stale or the health problems it probably was a huge contributor too.

I need some sleep. I’m going to be so tired in the morning. But, the plows are out and they’re doing the circulation of the school parking lot across the street, so all I can hear is that loud engine revving and the sound of the scoop scraping on the asphalt. Not exactly a lullaby. A very Canadian sound. Like a zamboni. Or tinny voice at the Tim Horton’s drive through.

I’m going to try to sleep soon. I’m going to lay down, tuck my body pillow neatly between my knees and pinch and release my muscles, from my toes to my nose, as a yoga teacher once taught me, until my whole body remembers how to relax at the same time.

I will not get distracted by the beckoning electric light of my cell phone’s internet. I will not.
Probably.
An hour, tops.

Goodnight, strange world. I’ll see what you look like in the morning.

Read Full Post »


I’m about to whine.

Last night was a rough night. Like, rough. So, after my awful night at the hospital, I had a positive experience there – positive in that I have a specialist to work with, whom I got in to see quickly and he seems both very nice and very thorough. Two attributes I love in doctors. He confirmed that I do indeed have rheumatoid arthritis and started me on a course of fairly aggressive anti-inflammatories as well as a pill to protect my stomach. Fine.
Here is the problem. It’s me. I’m the problem. My brain simply did not want to compute that this is a permanent disease.
I went home and broke the news to the family, and texted my best friend Sarah and we cracked jokes about putting baseball cards in my some-day wheelchair spokes. In fact, we all kind of cracked jokes all night because that is what we do. We talked about how some-day I’ll be entitled to a handicap parking permit, and won’t it be nice to have that? Prime parking all the time? Ha ha, so funny, it will be hilarious.
We went out Saturday night to hang with some great friends and while it was kind-of-sort-of mentioned, pretty much I ignored it. Besides, it was a birthday party and I wanted to have some fun.
And then Sunday, we took the kids into the city to hit up Value Village (my kids LOVE thrift shopping, thank goodness) and to go to Costco for some groceries. While moving around was a little sore for me after the festivities of the night before, I managed and we went home.

That’s where the day went south. For me anyway.
You see, I realized that this is not like my sciatica or any sprains or breaks or illnesses I’ve had in my life where time, medications and therapy are going to make it eventually go away. This one won’t go away. Ever. There is no known cure for RA. And yes, we got it early, it looks like, but mine has been a little aggressive in how quickly it cropped up and how fast it went from mild pain to full swelling and more pain. I don’t like it. And I started to feel very sorry for myself. I said to my husband maybe it was my karma for some of my poor choices. He (very smartly, we’ve been married a long time) didn’t really answer that. Since I had been somewhat active the night before and all morning long, my afternoon and evening especially were quite painful. So, I did what any self-respecting 40 year old adult woman would do: lay in my bed feeling sorry for myself and crying.
Because I’m a damn grown up.
This morning I’ve tried to put a new spin on things for myself. I’m NOT the only one in the world with a disease. I’m NOT the only one in the world with THIS disease. Feeling sorry for myself isn’t helping anyone, especially me, so I need to stop it. I got up, got dressed and went to work. I made sure I took my pills and I walked slowly from my parking lot to my building (four blocks), trying to let myself get into a rhythm and not pushing it too hard first thing in the morning. I plan to get up a lot from my desk today, so that I’m not sitting for too long stretches at a time. I’m trying to force my thoughts to go down positive pathways instead of negative ones.
In short, I’m trying to be a damn grown up.
No one wants chronic pain. My father has it in the form of fibro myalgia and I marvel now even more that he maintains the level of activity he does and if he can do that at 70 after suffering for YEARS, I can do it at 40.
I have no idea how yet, but I’m sure as hell going to try.

Read Full Post »

Older Posts »

%d bloggers like this: