Serendipity

Today contained one of those serendipitous moments that I credit to my HP. I had to look up the definition of serendipity before I could publish this post though. Does that ever happen to you? You hear a word used for years and understand it from the context in which it's said but if asked to define it you come up blank? That happens to me a lot.

Anyway, I've been sick since last week. I've been trying to shake it off, waiting for my immune system to do its work. Today I finally cried 'uncle' and went to the walk in clinic to get a throat swab. Let's hope this doesn't need antibiotics as I'm allergic to just about every single one of them. The person attending to me said she'd have to really think hard to come up with something I could take if the swab came back positive.

She was a medical personnel I'd known of who could be a great resource for one of my health issues. Today I asked her if she'd be interested and she said yes. She doesn't take new patients but was willing to help with this particular issue. I'm grateful for that. She is a wonderful advocate and having her in my court is a gift.

I am slowly learning how to be a self advocate, too. I've often either been worried I was inconveniencing people or I was on the defensive and came across as aggressive and demanding. There is something empowering about stating needs without apology or entitlement that I am grateful to be learning.

It's something I've learned was possible through the example of people in AA quite frankly. At first when people would simply say what they thought or set boundaries without apology and without throwing a hissy fit I wanted to duck before the war errupted. When there wasn't one (and I'm not saying this is normal or 100% happenstance in AA, cause I don't speak for AA, this is just my experience)it became a possibility for me, too.

So today I did a bit of a happy dance, sore throat and all.


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Roadie

I'm off on a bit of a road trip tomorrow so I might be scarce around these parts for a few days. I've been sick all weekend so I'm not looking forward to a 500 mile drive but all things considered I'll be glad at the other end of it. And the fact that I have the money to put the gas in the tank and food in my belly is not being taken for granted. I hope.


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Do I Know You?

He sat across from me, the cannula in his nose snaking its way to the oxygen bottle that rested against his leg. He had puffy patches under his eyes and looked a bit frail. I wondered for a moment if I knew him but dismissed it. I've asked strangers before, "Do I know you?" and only occasionally have I been right.

Instead I picked up a magazine and waited. A few minutes later someone hailed him from across the room and made a beeline in our direction. An old friend. A good, old friend. They gabbed back and forth in the comfortable way that showed they had a lot of history together. Bantered about which golf courses were their favourites. Compared notes on committees they had both served on. Spoke to each other with a gentle air of knowing that life is really just a pouf of time and then it's over. A warmth between two (not even grumpy) old men.

I half listened and half looked at my doctor's office magazine. After a time his friend bid goodbye and then it was just the two of us sitting across from one another, the chairs so close our knees almost touched. When he looked up and smiled my confidence increased. Even at that I had an argument inside myself.

Eventually I won.

"Are you Karen's dad?"

His face broke into her smile, removing all doubt.

"Yes, I am."

Instant tears for both of us at her name. Then we talked. Kindness in his questions. Kindness in his responses. I kept studying his face as if I could pull Karen right out of it. Talking to him made me feel like I could almost reach out and touch her. In his smile I saw her so fully that I just kept wanting to keep him smiling.

"I think about her every day." He welled up as he said it. I did, too. We were quiet then, no segue into a place that knows no sorrow. We just looked at each other with tears and said nothing.

Eventually I asked him about his oxygen use. Sometimes when you are sick it is so nice to have someone understand the ins and outs of what you are dealing with. We talked about how many liters he needed when he sat and when he walked. I knew Karen would have grilled him about this. She would have been worried at the high number he needed to walk.

I'd been thinking of her just a few days ago. Out riding the lawn mower I'd remembered her tale of being so weak that she fell off hers while trying to cut grass in a ditch. She never got on a lawn mower again.

She would be so happy for me that my health took a turn for the better. That I am in a remission of sorts. At least that's what I call it. The geneticist says this is a syndrome of peaks and valleys and I've been mostly on the peaks for several years now. Karen was my main support group while I struggled through many years of debilitating health issues.

Grief feels like an awkward friend to me. Yes, I know it but I don't know what to do with it. Several few years ago when I was in a grief and loss workshop I stood up to present my collage of losses to the group. Other people got all teary explaining theirs but I pointed out this baby lost, that baby lost, plus that baby lost, this brother, that friend like I was reading statistics from a Mathematics manual. Since then I've read that when you cry over one death you are also crying over every death you haven't fully grieved.

I'm getting better at crying although I still haven't wrapped my head around that Karen really is gone. A few days ago was the second anniversary of her passing.

Postscript: I asked him that day about his wife. Tentavively, unsure of whether it would be okay. She had been going through cancer treatments at the time of Karen's death. Although I tried to keep an eye on the obits I didn't know if she was still alive. I didn't want to add to his pain.

"Oh, she was having a few issues," he said.
Was in seeing the doctor right now as a matter of fact about biopsy results.

She was in there a long, long time.

I wondered at the dynamics of their relationship that he was in the waiting room and she was in the doctor's office. As if reading my mind he told me that one of Karen's siblings was in there with her. In the midst of our warm conversation crept the strain of the unknown.

At one point I debated excusing myself and going to the bathroom because of my rising anxiety at the reality of being there when she came out of the doctor's office. What if it wasn't good news? I didn't want to be there to witness it.

But instead of running away from what might be, I stayed.
The longer we waited the more our conversation dwindled and the tension increased.
But he kept asking me questions, turning the conversation my way. Karen did the exact same thing. She might have had to gasp between words but still she would ask how I was. No matter how many times I tried to turn it her way she never forgot she was in relationship right in this moment. She taught me much.

Forty five minutes after I first sat down across from him my eyes became glued to her face as she came down the hallway. She smiled at him immediately. Not the smile of the triumphant. But nevertheless, a smile. I felt myself relax. Good news then. She called out to him to say the results weren't back yet. Arrangements were made for the nurse to phone her when the results came in.

Karen didn't talk about dying very often. But once, a few months before she died she said, "What will my husband do when my parents and I are all dead in x amount of time?"

I wonder if her mom ever got the phone call about the test results.
Not that it matters in the end.
When I opened up the obits today there she was.
A week and a day after I saw her in the doctor's office.

I am sitting here feeling stunned.
That poor, kind man.
Lord, have mercy.

Grateful

"I should be like Jillian and tell you to suck it up."

Dearest one is helping me get through my Ten Minute Workout by keeping track of the stopwatch. Meanwhile I am belly aching about my thighs being on fire and I've only been doing the first pose for day one for 30 seconds.

I've been looking for something I could do on work days that wouldn't take a lot of time and would get my exercise in. My parents are both on diabetic meds and I don't want to follow in their footsteps. If I exercise every day it seems to help my blood sugar levels stay within normal range. The first day I miss they start going up. I only have one kidney and as diabetes is not a kidney friendly disease I am determined to keep one step ahead of it. Exercise is not the whole answer but part of it. Among other things, eating too much of certain fruits seems to affect my blood sugar levels, too. I do like cherry season but it doesn't like me!

I've been trying to figure out a morning schedule that will work for me once I start back to work next month. Getting up at 5 AM used to work fine. Then the time change happened this past spring and I just couldn't seem to get rested enough to get up that early. I'm determined to get up at 5 AM for several weeks before I go back to work and fine tune my schedule. Cutting down my exercise time on work days makes room for writing and centering prayer; two things important to my well being.

This morning I went for a walk and remembered the days when going for a walk, fine tuning a schedule or considering a work out regime were out of the question for me. I was instantly filled with gratitude. Yesterday, as I was painting our bathroom I caught myself with the brush above my head and was grateful I could do it. There was a time when lifting my arms above my head to shampoo my hair was the sum total of my ability to exert energy some days.

I am ever so grateful when I have some perspective.
Today is one of those days.


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Oh, For Vanity's Sake

"You lied." I say between clenched teeth.
"I'm good at that," he deadpans.
Damn. I smile in spite of myself.

Earlier he'd held up a tiny needle full of liquid and told me it wouldn't hurt near so much as the other ones he used to give me so I told him, oh alright, go ahead.

He is my family doctor. Someone I've known as a patient for a dozen years. We know each other outside the office through a mutual organization we're both active in as well. He has the quickest, dry wit that he uses to diffuse uncomfortable situations and a compassion that runs deep. The first time I ever mentioned my history of childhood sexual abuse to him he stopped in his tracks and listened with the whole of his being. He encouraged me to get counselling and celebrated with me as I began healing. When I did my radio documentary two years ago he gave me the kindest feedback on it.

I've been feeling crappy since late last week and today just happened to have an appointment to see him that I'd made earlier this month. He took a swab of my throat and gave me antibiotics for strep throat.

He listened to the other issues I've been having and ordered the appropriate tests. I asked him if I made another appointment would he do something about the bump on my right index finger. I told him if I was an old lady I'd live with it because it looks like it belongs on an old lady hand. He told me he could do surgery or he could inject full of cortisone right away. At first I refused but the bump looks exactly like the proverbial wart on a witch's nose except it's on my finger. Then, because he told me it wouldn't hurt, I said, sure you can pump it full of cortisone.

Do I have the word SUCKER on my forehead? No. Maybe the word VANITY, though.

Conserving Spoons

"I`ve never forgotten her. She gave me hope that it might be different for me one day."

I said this to the geneticist this past summer. I`d last seen him three years ago and during that visit he told me about another patient with the same connective tissue disorder as me. She had her rough spots but one day she came into his office and was a different woman. She had a vibrancy and life about her that he had never seen. I had left his office that day thinking that if it was possible for her it was possible for me. And this past summer I walked into his office embodying that same hope. I mentioned that I remembered her. I didn't even have to give him any details and he knew which woman I was talking about even though he sees hundreds of patients with our disorder. He told me she had since had a surgery but had come through okay. He didn't quite say the word remission but he talked in those terms. This is a disorder of peaks and valleys and no one can predict when they will rise and fall. I hate that about it.

This morning I got up and my muscles were weak. My heart was racing. I was fatigued like I haven't been in longer than I can remember. I've been in quite a bit of physical pain this past while. I made my way to town anyway. Went to my home group meeting. Did a few errands, but cut my town list short. Everything seemed to be in slow motion. I was hyper aware of my body. Every day used to be like today was or worse. For five years. Many times today I was grateful that today was an anomaly.

I don`t want to go back to counting my steps, to choosing whether to use up all my spoons washing my hair or save them for other things. I could wake up tomorrow and be fine. I could wake up tomorrow to more of the same. (For newer readers I can`t get my link button to work right now so if you type spoon theory in a search engine you will know what I am talking of when I talk about spoons and energy.)

This is where I`m supposed to tell you that I will be fine even if I wake up so fatigued I don`t have the energy to lift my arms above my head to wash my hair. That God will see me through and I will be able to be at peace regardless. That sick or well, I can choose my attitude. And while that is all totally true, there is a whole lot of shit to wade through to get to the place of acceptance. All those human emotions that I need to acknowledge before I can say, okay, it is what it is.

Days like today scare me.

Kissing The Ground

Of course I'd think of something to say in the middle of the night.

Dearest one is happily sleeping with the puglies curled around him. They are warm bits of comfort on a cold night. They like to curl up behind our knees or wiggle their way right in between the two of us as we sleep.

Yesterday morning, as I was putting my backpack into the car, my ankle kissed the ground and I heard a popping sound. I'm sure the noise I made could be heard right up to the stars. Ouch. By the time we got to town part of my foot was feeling numb, but when I got out of the car I could walk without pain, so I went to work instead of going to the health clinic that is next door to my office.

Dearest one called me about lunch time and chided me somewhat about not getting my ankle checked out. I said something along the lines of "oh, all right" and walked without nary a limp, over to the clinic. My thoughts were along the lines of "what a waste of my lunch hour this was going to be". To his credit, dearest one did not gloat when the doctor told me I'd damaged one of the ligaments and should take a few days off of work.

Having this connective tissue disorder means my tissues take much longer to heal. The doctor gave me the option of visiting the cast room at the hospital for either a removeable boot for stability, or a cast. Off I went for a removeable boot. The cast room is right next to the day surgery and the outpatient department. I sat there keenly aware that my minor injury was really just a blip on the radar screen, while other people were going to get wretched, wretched news today about the state of their health.

The pain caught up to me by the time we got home so I was in bed before 8:30 tonight, totally exhausted. You know I am tired when I turn off the TV and miss the rest of this sport during the Olympic pre-trials.I apologized to the women on the screen and went to bed.

I've been awake for a few hours now. Writing here in the middle of the night is akin to deleting the cache on the computer. For me, it makes room for sleep.

Good night.

Doing A Happy Dance!

Saw both doctors today.
No heart surgery required.
They were both so supportive of all my lifestyle changes
and so happy with the results that I don't have to see them for 3 years.
Stuff they wanted to give me pills for
has resolved itself by lifestyle changes.
How cool is that?

EDS

"I just wanted to wake up feeling rested."
It's nearing the end of the day and dearest one and I
are washing up the supper dishes together.
Tonigh I'm grateful that it will be a short work week.
I wake up feeling rested once every few months.
Sometimes, like tonight,
I have to admit that I have health limitations.
That's the short explanation of my sometimes lack of spoons.
The longer one wearies even me.
For the most part I try to take it in my stride.
Except when I get this tired.

Being

Yesterday I spent the day in my pajamas.
I'd have the flu since Thursday night.
I ignored my pounding head and went to work Friday anyway
because I had stuff to do.
As if I was indispensable.
Ha. As if.

I kept trying to ignore the body aches and fever and headache
until yesterday when it became clear
that ignoring it wasn't going to work any longer.
So I stayed in my pjs and did nothing productive all day.

Doing so helped me see that I have been living a driven life lately.
Pressured by unrealistic expectations of myself.
I wasn't aware of that before yesterday.
I was too busy trying to get things done.
As if that is the only sensible way to spend a three day weekend.

Nine years ago I had a bout of Bell's Palsy.
It's never completely resolved itself.
Whenever my immune system is under attack
that side of my face goes numb and droops.
It feels similar to having been to the dentist
and leaving his office with a tingly face
that feels funny when you touch it.

Yesterday my face went numb again.
I can still feel the tingling as I type.
Right from my forehead to my chin.
My body tries to talk to me.
To get my attention so that I will take care of her.
Sometimes she has to shout
so that I will stop long enough to listen.

It's hard to let go of what seems
like a mile long to do list.
To do nothing on a long weekend but rest.
I thought I had learned through my years of spoon counting that being was more important than doing.

One Of These Things Is Not Like The Other....

"I'm scared."
I look up and in the bed across from me
is a woman in tears.
There is no privacy in this holding cell.
Least that's what it feels like, a holding cell
or an assembly line.
She's too far across the way for me to say anything
without it sounding like I'm yelling my comfort.
Somehow yelling and comfort
don't seem to belong in the same sentence
never mind in an outpatient department.
A nurse comes who listens and comforts.
God bless him.

I've laid there for quite a few hours waiting for my test and this woman across from me is the third patient whose occupied that bed already this morning. I thought the system seemed like an assembly line when they brought me in. As I see people get undressed (well, not watch them, but you know they are doing that behind the curtain) get wheeled down the hallway and come back, get kicked out of the bed so the next person can have a turn, my hunch about assembly lines rings true. As this woman talks of her symptoms and cries I cringe inside. I'd be scared, too, if I were her. It doesn't sound good.

Earlier I smiled as I observed an old man (born in 1924, I heard him) reading a Diana Gabaldon novel. For some reason I would have never guessed Diana Gabaldon novels and old men belonged in the same sentence either.

People get wheeled off for colonoscopies and angiograms mostly. I seem to be the lone one being wheeled off in the other direction to the echocardiogram unit. I breathe in the hospital air and that smell, the one that lets me know where I am even with my eyes closed, makes me so very grateful that I am in the outpatient department and not a room.

Five years ago I spent 10 days here, in the city far from home, getting one test after another done. I was the youngest patient on the Cardiac Care Unit and spent my days with older women who had wonderful words of wisdom for me. I distinctly remember a woman with chronic obstructive pulmonary disease, who was hooked up to oxygen 24/7, tell me what a blessing it would be if I got diagnosed with what the powers that be thought was a genetic connective tissue disease because I would be paving the way for generations to come.

That I would get to set the example of how to live with it.

Some days we walked to the TV room together and when we got there she'd move her oxygen pulse meter to my finger and check how I was doing. She'd nod her head in encouragement no matter what the number was and we'd turn and watch a TV that blared too loud and for too long. The day she talked to me about perspective I was sure she was an angel sent by God to show me the way to hope.

I am so grateful that the hospital is not where I live.
Grateful that I get to choose my attitude and outlook on life.
Life as it is.
Whether I like it or not.
They found a hole in my heart today.
A small one.
The doc said she's sitting on the fence
as to whether it needs to be fixed right now or not.
She's leaning towards not.
I'm fine with that.
I'm just grateful for another piece of the puzzle in place
for the temporary home I call my body.
The hole isn't going to kill me.
It doesn't solve all the questions
and the doc will be consulting with other specialists
to come up with a plan of action.

The last thing I wrote in my journal this morning
before we went to the hospital
was that I was scared.

The cardiologist and I ended up
negotiating the level of sedation I would get.
That meant I was awake for most of the procedure.
I forgot how triggering it is for me
to have tubes stuck down my throat
without any control over them.
I absolutely hate it.
But I made it through.

And here I am in a beautiful hotel room.
There are many things in my life right now
that are so totally out of my control.
Well, not like there isn't on any given day
for any given person.
I know that.
But some of the current out of control happenings in my life
are of the gut wrenching type.
And I don't like that one little bit.
Hey, I managed to type that sentence without swearing.
I've censored my swear words a number of times in this post.
I'd blame it on the lingering effects of the sedation
but we all know me better than that.

Digging deep for a gratitude list
is what I need to do right now.
That I don't have to do more than scratch the surface
for most of it makes me grateful in itself.
That I know it's okay to feel both scared and grateful is good, too.

As I went to wrap up this post that song from Sesame Street came to mind for a title.
So many things in life don't seem to belong together but still there they are.
I don't know, do swear words and hope belong in the same sentence?
Are they more alike than different?
Some days I wonder.

I am reminded once again of the term, "I get to...."
I get to have hope.
Not I have to or I want to
but I get to.
And now I'll shut up before I type a swear word or two in there for emphasis.

Going Under

We're in big city far from home where I'll have a diagnostic test early tomorrow morning which will hopefully put another piece into the puzzle that is my enlarged heart. It's been a long day of driving with the bonus of seeing one of dearest one's brother, who lives just a few miles from us and who set out on holidays this morning. We ran into each other at lunch time in a city 6 hours down the road. A nice surprise in our day.

The last time I had a diagnostic test that required being put semi under I woke up feeling drunk. I absolutely loved the feeling as if it hadn't been 20 years since I'd experienced such a feeling. This time I advocated for myself and told the cardiologist that I would refuse any medication that would make me feel that way again. She went a little off on me - concerned that I'm an alcoholic - and promptly ordered blood work for my liver. Sigh. My dear cardiologist it's been 21 years since I had a drink. I think my liver has recuperated by now. She also came up with an alternative which has no happy drugs in it. I am grateful.

For all my attempts at surrendering life to God on a daily basis there two times when I really get it that I am not in control of the universe. One of those is when I get put under for medical tests. The other is when I get on an airplane. I'm glad that going under anaesthetic tomorrow will be without the side effect of feeling like I'm flying high.

Lickety Split

It's been a long day.
It did snow.
The snow didn't last.
We needed the moisture.
So it's all good.

The pugs and I had a long nap.
I'm feeling better than I did last night.
Not sick enough to be in bed.
Not well enough to be doing much.
That in between place.
Sickness limbo I think it's called.

Several times today I got all teary
out of gratitude because
of what a gift it is
to be sick temporarily instead
of permanently, you know?
I felt grateful for that.
And then I felt silly that
those thoughts made me teary.
I had my own little drama
right there in my living room.

Thankfully it was short lived.
I'm still grateful.
Just not teary.
Nor feeling silly for the tears.
I was missing people who have died.
Thinking about my friend Karen
who would give anything to be alive
on a cold snowy day in May.

I guess in perspective it's all better
than whining about feeling sick.
Not that I'm not capable of whining.
I can win me a whining prize lickety split.
Just ask dearest one.
He's heard me whine aplenty.
Doesn't mean I welcome the flu, either.
But it's only the flu.
Ya know?

Waterworks

Two rambunctious little pugs woke me up this morning.
It's hard to stay grumpy when
they nearly wiggle themselves inside out
because I am home.
In a few hours I'm off on a road trip to see Fr. Charlie.
Who knows how I'll be when I get there
but right now I feel like I'm going to talk for 2 hours straight
without nary taking a breath.
Well, except that breathing is necessary.

Yesterday I sat in a waiting room
and listened to a young girl talk just like that.
Loudly.
I heard all about so and so and their boyfriend
and whether the baby is his or not.
Wow, she talked loud.
Like the young person beside her was deaf.
I watched her friend's body language
and it seemed to say please speak quieter.
I sat and judged the young girl for her verbal diarrhea
until I realized that most of us
probably have similar conversations going on all the time
except they happen in our head not in a public arena.
So there really is no difference between us.

I was sitting there waiting for a pelvic ultrasound.
One where the prep is having to drink a litre of water
and then hold your pee for an ungodly amount of time.
I went to the reception desk upon arrival
and told them this was cruel and unusual punishment.
They asked me to repeat myself.
I did.
In a whisper.

When I was called (they call first names only)
I walked very quickly to the room.
I got up on the table
(I know this is all too much information
but aren't you glad you aren't in a public waiting room
hearing me speak this rather loudly in your ear?
Wait. A blog is sorta like a public waiting room.)

Anyway I got up on the table
only to hear her say after a few seconds
that I needed to go and pee a little bit.
My bladder was too full.
I would've laughed except that would have caused me
to pee right there on her table.
I told her peeing a little bit wasn't going to happen.
Now, I envy all those folks who can stop peeing at will.
It isn't and never has been me.
She told me people did it all the time.
I told her not in my lifetime.
She sighed and did the ultrasound.
Then she let me go pee and did another kind of ultrasound.
Blessed relief.

When all was said and done I looked at the screen
before I left the room
(as if I can miraculously read an ultrasound picture, duh)
only to see that it wasn't even my name on the screen.
My first thought was that there was no way
I was going to repeat the torture.

So I went out and told her
that um, right first name, wrong everything else.
Her face registered an "oh shit" moment.
She assured me she could fix it but it would take a while.
Turns out there were two of us in the waiting room
with the same first name.
And when they'd called it
I saw this other person out of the corner of my eye
start to get up out of their chair
but I beat them to it.
I had to pee so bad I just wanted the test over with.
I never stopped to think it wasn't my turn.

And since I don't think there is any delicate way
to finish this rather indelicate post
I will just stop right here
and wish you a good day.

Enlightened Yoga

Increasingly during the next 6 weeks
it will seem like the sun hardly sets.
Which means it's no longer dark out when I get up.
Nor is it dark when I go to bed.
I try not to hang on,
like a spoiled child begging it's parent
to stay longer on a play date,
to this time of year.
It's awfully tempting though.

This week I've changed my morning routine.
Lovely cardiologist told me I must
find a way to exercise daily no matter what.
So I'm doing yoga at 5 am.
I'm determined to do this even though
I'd much rather be sleeping.
I'm not stubborn for nothing.

Exercise is one thing the doctor said
was my part in helping
the enlarged heart situation.
That, losing more weight,
and lowering my sodium intake.
Which is low already.
It's unbelievable how much salt is in everything.
Although I'll take a bland diet
if it means living longer.
Wouldn't you?

Wholeheartedly

This morning I watched an elderly couple skate circles around each other at the ice rink in what used to be the world's largest mall. She, with gray hair and aging body, made the graceful spins and twirls seem effortless. Her actions had the ease of a teenager and I wondered if she felt like a young girl again.

He, well, what a sight. Dressed in blue jeans, a button up blue shirt and a ball cap, he made these little jumps and twirls, spreading his arms with such flair as he landed them, that I couldn't help but stand there and grin. He, too, had a big grin on his face as he skated.
He looked full of joy.
It did my heart good.

My heart.
It needed some good.
My appointment with the cardiologist didn't go as expected.
I was so sure she would lecture me about my weight (which she did), be happy about my cholesterol readings (which she didn't even address) and then send me on my way with a "see you in two years time" wave of the hand.

Nope.

She sat and told me that the upper chambers of my heart are enlarged. That she needs to run a battery of tests to see what is going on. Most likely it's a hole somewhere or the shunting that was deduced several years ago, but whose source was never found, that is wreaking havoc with my heart.

I sat there and just wanted to cry.
I regretted being alone,
in a city 8 hours from home,
as she told me that news.
I felt so vulnerable.

I thought about my increasing fatigue that I'd been blaming on my new job.
About the near daily bouts of my heartrate speeding up.
About how I almost never wake up feeling rested.
I thought to myself that I was glad she didn't tell me I have cancer.
Somehow I feel more in control less vulnerable with heart issues.

I know there are things I can do to help my heart.
She laid those out clearly.
And there are things that are completely out of my hands.

It was a three hour drive to get to where dearest one was at a conference.
The committe in my head had one hell of a party on the way there.
I had to distract them too many times to count.
They went full speed from one far reaching conclusion and back again.
Ridiculous, but very human thoughts.

I get to dearest one and he is in one foul mood.
He had a migraine so he left the conference mid morning,
took his migraine meds, and next thing he knows it's mid afternoon.
His eyes are still light sensitive and his head is tender.
I'd be grumpy, too, if I were him.
We wait at the elevator and I start to take his mood personally.
I think of the video I posted earlier in the month
and smile to myself.
Okay, dearest one is grumpy, I am feeling needy
and I get to choose my attitude.
Somewhere in my head I think, "Lovely, just lovely."
Then I pray and detach and manage not to get sucked into grumpyland.
We sit with our backs up against the headboard of the bed and talk.
Eventually dearest one asks me how my appointment went.
There is an "oh shit" look on his face when I tell him.
Sometimes being married to a nurse sucks.
They know how serious an enlarged heart can be.

Earlier in the day I tell God that I am not going back to a life where I have to count my spoons. Not if I can help it. Problem is I can only help so much, you know?

I haven't sat and fully hashed this out with God,
but I will.
After the house is quiet and people have gone to work
I will sit and tell God all about my fears.
I will have a good cry.
And I will surrender the whole situation and myself
to the One who loves me wholeheartedly.
I will pray the Lord's prayer.
Surrender is both sweet and painful.
It will,no doubt, do my heart good.

Sidetracked

I have a full week ahead of me.
Three days of work, then two afternoons of appointments.
One evening meeting lasting 4 hours long where I'll give a preview
of a talk I am giving at a women's retreat next month.
Then a road trip to see only daughter
and get some medical tests done and see
the cardiologist.
The cardiologist who will rag on me about my weight
as usual, for not being in that magical range
that I will never be in again.
I'm okay with that.
She won't be.

I wish she could see this journey of self acceptance
is so much more important than the number on the scale.
Celebrate the success of my not binge eating anymore.
Celebrate the weight loss I do have.
But no, it will be boiled down to a number on the scale.
I guess I better deal with that before I have me some
huge ass resentment.
(I can hear the cardiologist telling me
I already have the huge ass bit down pat.)

Sorry, got sidetracked by the committee in my head.

Anyway, all that to say I'm taking a blog posting break until after I get back home towards the end of the month. Talk to you then.

Eyes To See

"When we can see the image of God where we don't want to see the image of God, then we see with eyes not our own."
~ Everything Belongs

This was just one of many gems I read while I was waiting in the doctor's office yesterday. I love this book and if I read it too many more times I'm going to have it underlined from beginning to end. I continue to pray to have eyes to see.

I slept for 12 hours last night. Lovely needles in the shoulder....not. "Ouch," I say more than once yesterday as the doctor tries to find the right spot. "Sorry," the doctor replies, "I hit a bone there." Makes me grit my teeth just typing that. Lord, give him eyes to see. Past the bone. Please.
But the good news is that I haven't needed the shots for nearly 6 months and hopefully that trend will continue. It's much better than weekly ones.

The injections usually make my heart act up and it was going double time for a bit yesterday when the energizer bunny got lost in the bush. I'd bought her a fluorescent orange jacket this past week. She knows already when I pull it out that means we are going for a walk. She sees it and starts whining and making a ruckus. She loves going for a walk. Once out on the road yesterday she decided to follow one of the other dogs (yes, we have two outside dogs, too) into the bush. In my more paranoid moments I am convinced that dog purposely led her on that jaunt to lose her. She is the pack leader and does not like the energizer bunny one little bit.

Anyway, I briefly thought about that as I saw the two of them head into the bush, then continued on my walk with the other dog. When I got back to the yard there was no energizer bunny to be found. It wasn't too long until night fall so dearest one and I headed in the bush to find her. There was fresh snow so that helped, but it was still a tad bit too long until she was found. She'd got hung up on a branch and wriggled out of her jacket. We assumed she'd whine and howl that she was lost, especially when we yelled for her, but instead she happily walked back and forth on her little trail in the bush, waiting to be found. By that time she was shivering with cold. She happily snuggled into his jacket on the way back to the house. I told her maybe there are guardian angels for dogs. And she shouldn't keep hers out in the cold so long. No more side trips for her. No sirree.

PH Awareness Day

I opened my email this morning to find a note telling me today is PH Awareness Blogging Day. You can find a list here of bloggers who are participating. This is something dear to my heart. Please take a look at the links and educate yourself. I'm quite sure there are lots of people out there misdiagnosed with some other lung problem when it's really PH.

In the beginning, when I first got sick, the powers that be thought I might have PH. My friend Karen who passed away in August had PH and it was ultimately what caused her death.

Part of the reason my blog has the word breathing in it is because when I started this blog nearly 4 years ago breathing was something I really didn't take for granted. On the worst days I could talk or breathe but couldn't do both at the same time. (Me? Choosing not to talk? What a concept!) It was a long road to a diagnosis. At one point a specialist stuck me in the hospital for 10 days and ran all kinds of tests. They even flipped me over to repeat one CT scan to double check for abnormalities in the vessels in my lungs. In the end they took the chance and put me through a risky heart catheterization, the gold standard test for PH. A risky test, because of my bleeding issues, which showed I was on the cusp of having PH. Had I been in the United States I would have been diagnosed and put on medication to halt the progression. The specialist told me there was no funding available for medication until my numbers reached a certain point. I looked at him and said, "You mean it's a crap shoot, then. Wait until the numbers rise so the government will pay for medication and hopefully it will halt the progression of the disease." He nodded. I felt very frustrated.

I don't know what happened. God only knows. A few years ago I had some prayer before I gave a talk at a retreat. I remember standing there afterwards and commenting to someone that I was breathing as clearly as I did when I was on oxygen. It felt surreal. A few months later my lung function tests showed an improvement. Eventually the specialist said I didn't need to see him anymore. Then, last year when I went to rehab and started dealing with a bunch of issues, my health improved even more. The days of having to count my spoons became a thing of the past. Our trips to town had previously very planned out, I was always dropped at the door and had to choose which stops were priority. These days I delight in parking as far from the door as I want. Yes, I still sometimes have rough days. Days when lifting my arms to shampoo my hair expends more energy than I can muster. Those days are very discouraging as I have no idea if they are temporary or the start of a downward spiral. Thankfully, they've continued to be temporary glitches.

It could have turned out so much different.
I try not to take my current health status for granted.
My friend Karen wanted nothing more than to live to see her 50th birthday.
For a long time I read the PH Message Boards for support and encouragment, especially when I had to deal with doctors who looked at me like I was just attention seeking. That if only I would lose weight and exercise my breathing problems would go away. They conveniently overlooked the fact that I had been doing just that when my problems surfaced. Please don't look at someone who is obese and on oxygen as if it's their somehow their fault. PH is high blood pressure in the lungs, which has nothing to do with diet, exercise, or weight issues. You can't prevent it. Skinny, fit people get PH, too. And there are others who look perfectly healthy but who struggle mightily to be out and about. So many times people would tell me I looked so good as if looking good nullified how I felt. I never bothered to tell them that on the very worst of days I never went anywhere, so they only saw me on my best days.

Take a deep breath and be glad you have the ability.
Trust me, if you can't breathe, nothing else matters.

A Temporary Glitch

This is Saturday's post written on Friday night.
I am so, so weary tonight.
No spoons.
Not sure what's going on with my body
but I've been having problems with my heart racing
and lessening spoons for nearly 2 weeks now.
(I'll be seeing my doctor this week.)
Dearest one had to push the grocery cart in the store tonight
and I couldn't carry in any of the shopping bags.
I knew carrying them would make my heart go berserk.
I feel discouraged and weepy.
Long time readers know of the vast improvement to my health
that I've enjoyed since I came home from rehab
a year ago. How I went from having my days dictated by my
spoon supply to not giving them much thought at all.
If I have any say in it I'm not going back to that.
I hope this is a temporary glitch.
Lord have mercy.
Please delurk today, whoever reads this.
I just need to be reminded that I'm not alone on the journey.