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While I was away, this funny thing happened which, admittedly, used to happen with greater frequency but has kind of stopped over the last years. I paid attention to myself.
Yes, yes, I pay attention to myself, but, like, in that I have health issues that demand attention. When on holiday, particularly when travelling without one’s family, who else do you have to focus on…but you?
Flash back about five years. I was in peak health. I had joined a gym, befriended the owner and had a personal trainer. I looked great. I felt great….physically. The problem was that I was all about how great I looked. I let a lot of relationships slide, including the one I had with myself. Because outwardly I was looking amazing and yes, I was very much enjoying grabbing something off the rack from the “regular” section of the store and knowing it would fit before I even tried it on, but, I was also in denial about a lot of internal struggle. And I needed to turn my spotlight back on my family.
So I did.
And then we moved east, and I spent a year looking for work and cooking and baking. And eating. And then of course Shawn’s health took a sharp nosedive and then so did mine.
A year of steroids and treatments and mandatory feet/ankle rest and, well, if you read the blog you know the rest. I gained a lot of weight. Yet the irony was, in ALL other aspects of my life, I was the happiest I have been in years. I found a job I love, made friends, became a proactive part of a new community, and basically started enjoying life again. I was heavier, sure, but that wasn’t the main focus of my being anymore. I lived in yoga pants, jeans and hoodies anyway. And all that mattered was that my husband and kids loved me.
Packing for my trip out west, I took along a bunch of clothes I hadn’t worn in a while. Because I knew that I had nights out, and a lunch with coworkers and plans that required me to dress up a bit. And I packed my makeup because, well, I *was* going to a wedding after all. But without kids to organise and a husband to keep me busy I only had me. So I spent time. And, I gotta say, I was really happy with how I looked. I felt like a more polished version of me. It was great. I texted my friend Dana that I looked good out West and sent her outfit pictures.
On my last day of holidays, Allison and I went out to run a couple of errands and, being early for one of them, we stopped at a store for plus sizes. I had never gone into my branch of it at home. I was still clinging to that memory of being an off the rack size. (Here’s the thing, when I put something on, in my head, I see myself wearing it in my old body so sometimes I get upset when I see how it looks on my current body)
Something dawned on me that day though, trying on clothes with Allison. If I let go of the number on the label and just put on something that fit, and fit me well, I looked great. I felt great!
So, I bought a pair of jeans. Then I came home, went to my branch of the same store, and bought another pair of jeans. And a top. And a vest.
Then I went home and looked at my closet. Big, heavy sigh.
I am a clothes hoarder. No, maybe it’s not that bad, but, I hang on to stuff with the idea that ONE DAY, I’ll get back into it again. It’s been five years. And even with the great new clothes that fit me well and with taking that bit of extra time again to ensure that I was putting a little effort in like I did out West, when I saw the things I had once loved that no longer fit me, the sadness crept back in.
Well, I don’t want to feel that anymore. It was time to get rid of the “I have a dream” section of my closet.

Saturday we took the kids into the city for the Buskers on the Bay festival. We spent morning to mid-afternoon watching the acts and then scooted home so our middle daughter could get to work on time. Kids scattered, hubs went to play his new video game and I went upstairs armed with an empty garbage back and a determination, albeit a slightly nervous one.
It was like ripping off a band aid. I started in the closet. There were skirt suits and dresses. A lot of them like new, and beautifully made. I posted those online in a “buy nothing” group so that some other local woman could get the benefit of my previously expensive taste. As I suspected, everything I posted was gone by mid day Sunday. But the closet wasn’t enough. I started in on my dresser. And my shoes. If it didn’t fit, it went. At first I was sentimental and sad, but as the chore went on, it got easier and easier. And then I started to feel really good. Everything left fit, fit well, I liked it and it looked good on me. Why hadn’t I done this YEARS ago? No more would I open my closet and immediately feel fat and regretful. Now I felt empowered and awesome.
My husband thought this was a good idea so we spent a few hours on Sunday doing his closet as well. And cleaning the room. Amazing how much clutter can build up without really being noticed.
I feel lighter today. I woke up and every option I saw was an actual option.
The only downside? Now I am noticing that the linen closet needs a purge. And the living room. And the kitchen. The joys of homeownership.

I took a vacation. I went to an amazing wedding and met with wonderful people and stayed with an absolutely beautiful friend. And I kind of found myself a bit. And I remembered that I like who I am.

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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.  

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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.

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We have…an infestation.
No, not like six years ago when we had bedbugs and DEAR GOD may we never endure that perfect storm of EW ever again.

Saturday past. The day before Mother’s Day. We actually had a warm, beautiful day with double digit plus temperatures. It was wonderful! So of course we spent the day out in the back yard doing clean up, pulling out old shrubs and things that we’ve been meaning to pull out since we moved here, raking, you know, all that good hard summer prep work.
We left the back door (to the sun room) open, and, the door from the sun room to the kitchen. Just a bit. Just enough for the dogs to get in and out so they too could enjoy the fine weather.

We forgot to close them.

Saturday night. My daughter and I are in the living room watching a show. My husband is down in the basement playing Assassins Creed. Ash gets up to go to the kitchen for a drink of water and immediately starts yelling for Shawn and I.

Why?

Because we have crickets. Big, giant, black, ugly crickets. All. Over. The. Kitchen.

They were on the floor, on the cupboards, on the wall, ON THE CEILING!!! No, I’m not kidding, two of them were on the goddam ceiling. She was frozen in the doorway freaking out.

Shawn came up and we spent a good fifteen minutes killing, catching and getting rid of them. After we closed the door of course. Our dog Kermit ate one, I’m pretty sure.

That was Saturday.

On Sunday, we found about six more. Three of them in the living room. Yesterday morning the kids killed four more in the morning, more after school and I got two when I came home from work.

So, let this be a lesson to you all. If you’re going to pull up old shrubs and shit trees and basically turn over old earth in dark, pokey corners of your yard, DON’T LEAVE YOUR DAMN DOORS OPEN!

I have to go now. I have a plague in my home and it must be cleansed.

ugh.

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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.

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It turns out, a LOT of you read my post on the ONE night I didn’t love my hospital. Like a lot. It was one of my highest rated posts ever. Which is not a bad thing. I even got a thank you for writing it from one of the staff members at the hospital. But let me fill you in on what’s going on since then and why I am back to full-on loving my hospital.

Yes, it was a shit night. No, no one should have to wait 11 hours in pain before seeing someone. That was crap. I stand by that.

So I posted my pity party thing the other day. Feeling sorry for myself and whining and all that good stuff. But then, some things happened.

On Monday, my husband drove our daughter to Halifax to tour the University she was accepted to (don’t ask me how in the hell we’re going to make those financials happen, I’m still hoping on the lottery) and I went to work. I LOVE my job. I lucked into working at one of the greatest places in the city and I have the most wonderful co-workers. But it’s really hard to keep your spirits up when you’re in pain. My feet were still swollen despite being on meds for three days by that point and my legs were hurting. I was still limping and a lot of people at work asked me how I’m doing. Well, I was honest, but I hate complaining all the time so often my answers were kind of jokey. Oh, you know, still sore, but hey, I’m okay!
I got home Monday night and had some running around to do. My daughter had a flute lesson, with my hubs and other daughter away it was just my two youngest and myself for dinner so we stopped at Sobey’s and I let them get whatever they wanted to eat. None of us were really hungry, it was a nice treat.

When I got home though, I just couldn’t ignore the pains. My legs from the knees down, my wrists, elbows, I was hurting all over. I thought, I’ll take a nice bath. That’ll feel great on all my sore spots. And it did. Until I tried to get out of the bath and I couldn’t get up.
I had to call my 15 year old daughter for help. That night I called my Rheumatologist’s office, knowing I would get a voice mail. I left him a message asking him to please just call me back in the morning. I wanted to know if it was normal for everything to get exponentially worse before it got better. His office called first thing in the morning with an appointment for me for 9:30 Wednesday. That fast.

Tuesday was more of the same. Pain so bad it was hard to get through my day. Shawn and Ash weren’t due to come home until Wednesday but I couldn’t hide from him on the phone how hard it was for me. I got home from work just after 8pm, spent about fifteen minutes with the kids and then came to bed. Within a half hour I heard voices. Shawn and Ash had come straight home from the tour and were here! I’m so glad they got to do their full tour first and I’m so very thankful they were home because quite frankly, I was scared and grateful to have Shawn able to come with me back to the hospital. By now my legs were the same size from my mid-calf down to my toes they were so swollen and there were red patches on my skin.

I saw my Dr. the next morning and he confirmed that I likely have sarcoidosis, a very serious disease, but a treatable one, and it was likely that which kicked me into the RA symptoms. By the time I left the hosptial at 1pm that day, I had had a CT scan with contrast (no, the radio active dye DID NOT give me any super powers. I’m still bummed about that), and EKG and more lab work. He just called the departments and got me in. And everyone was great.

I am off for a few days now on some new meds trying to get the swelling down and my symptoms under control so that I can find my new working normal. It’s daunting, and a little bit scary, but I know that I have some really great care behind me. I may not have a family doctor yet, but I do have a specialist who is looking out for me in every sense of the word and that, my friends, is golden.

It just goes to show you, it’s important to speak up when the system lets you down, but it’s equally important to talk when they really rise to the need.

Now, if only I could stop googling sarcoidosis.

Special thanks to Dr. Grant and that lab tech who took my blood whose name I have forgotten. You were great! Didn’t feel a thing.

On with life, dear friends. A couple of days of bed rest means more work on the current book. And that’s something to be really thankful for!!

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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.

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