Wednesday, July 30, 2014

HOUSE MD, Hospital Vacations and Southern Vampire Novels.

Remember how I was looking forward to there being no more appointments after my sleep study? I forgot about follow-up, but that's no biggie.  I was beginning to think that we've got all this figured out... Until I watched House.  Never watch House when you are experiencing symptoms and waiting on a disease diagnosis.
This show is evil, and awesome and evil.
So anyways, Last month my breasts were swollen and very painful, this month too, it felt as sensitive as when I was pregnant, but I thought, hey fibromyalgia makes stuff hurt so... why not my boobs? I didn't even consider telling my NP at our appointment because I figured it's just another symptom of Fibromyalgia.  So this is when House comes in to the picture. Watching House when you are not feeling well is worse then googling your symptoms, you will have convinced yourself by the end of the show that you either have lupus, sarcoidosis or complete liver failure and that you will begin to vomit blood any minute.  So anyways, There was a show where Dr. House mentions a man having a high prolactin level.  Then I remembered prolactin headaches (I've been having some whopper headaches) then I remembered that my breasts had been tender and swollen. I decided to try some hand expression and low and behold I am lactating.  Yep, I am lactating.  Not a lot, just a few drops.  So the next morning I sent Scott out for pregnancy tests (which is a long shot considering that I had a tubal ligation) both negative.  The next day I stop in at the NP office, and they squeeze me in that afternoon because my sleep study is that night and all of the next day.  Long story short I could only produce a drop or two for the nurse, (it's a bit nerve racking having someone stare at your nipple will you squeeze your breast) not enough to test.  So blood work for prolactin levels and pregnancy as well as a mammogram and ultrasound coming up.   The idea of a mammogram scares me, they look very painful.  She assured me that it is probably nothing to be worried about, that I had no lumps but it would be a good idea to see what is going on in my breasts.  From there we went home for 20 minutes then packed and headed to the sleep study.

Scott and I had a heart to heart on the way there, it was just over an hour drive.  It's hard to take care of someone in pain. He's had to take on more of the house work and deal with my mood swings.  I'm not bringing in very much money because I'm not working a steady job at the moment so he is supporting us more financially then before.  His anxiety has increased, our arguments have increased.  However, our ability to talk about them afterwards has also increased. We have more compassion for eachother's circumstances, we forgive quickly.  At the end of the day in which we have argued, I can take his hands in mine and say: "We've both had a rough day."  We are able find solace in holding eachother realizing that this situation is not easy for either of us, and that we are still learning. 

So, I was nervous when we got to the hospital.  I'm always nervous around hospitals.  We were lead into our private room that had two adjustable hospital beds, a sink, a lamp and a chair.  The first thing I thought about was bed bugs.  With so many people sleeping here, how do they guarantee no bed bugs?  I realized that I had to let go of that creepy thought, there was nothing I could do about anyways.  I filled out a questionaire about medications and emotional significance.  Scott brought his guitar, I brought a novel by Charlaine Harris, something I had already read so it would be easier to put down when it was time to sleep. Scott and I cuddled up together in one of the tiny beds and he read a poetry book while I read my smutty vampire mystery.  It was explained that I was to go to sleep when I normally would, I wouldn't be disturbed unless they needed to adjust some sensors, then I would be woken at 7am. and sleep for 20-30 minute intervals over then next 5 hours.
Scott had apparently forgotten to call ahead and ask the beds what they were wearing:
How Embarassing

So I had also gotten my idea of what a sleep study looked like from House. What a sleep study looks like on House :

This is what is really looks like:

It took an hour to get "The Full Montage" as our tech Jim called it.  Obviously we laughting and having a good time.  I try to find humour in situations that usually would make me anxious.  My nervousness only slipped in right as they showed me the nose tube, but I breathed and smiled and said my nose felt tickly. At least I didn't need and iv.  At bedtime I fell asleep easily but had a hard time staying asleep, new sounds and such. The wires didn't bother me as much as I thought they would.  In the middle of the night some strange dude opened the door and said "Sorry." and left.  Apparently he wasn't in the sleep study, he got in through a door that was suppose to be locked and was wondering around the hospital looking for the er. That was a little creepy.

The next day they woke me at 7am, I was irritable, dazed and stiff.  I read my book, ate veggies for breakfast, Scott got me decaf coffee and then I was told to go to sleep for 20 minutes.  I kind of slept.  Then the same thing again, and again, then lunch.  I stumbled down to the cafeteria with Scott.  My brain was so fuzzy I couldn't order or think straight.  I had the perogies, not bad.  Then one more "nap time." And we were done.  Tooks, one of our techs mentioned that we should enjoy our "hospital vacation".  You know what? I kind of did.  There were no dishes, no having to tell the kids to do things, no reminders of things I had put off. There was something very relaxing about that, even if I was covered in wires and sleepy as sh*t.

The thing is that they attached the sensors to my head with sticky conductive stuff that dries hard and gets stuck in hair.  They have a shower there to try to get it out, but my fibromyalgia makes showering very painful to me, so that was out of the question.  I told "Tooks" that I was just going to cover my hair with a scarf and go to Walmart (the only place with a hair salon that you don't need an appointment for) then get it washed out.  She says to me, "No, no you just wait.  I'll get some rubbing alcohol and try to get out as much as I can before you leave."  She came back with rubbing alcohol and guaze pads and scrubbed every part of my head that had a sensor on it (I believe there were 24).  It was painful, but she was trying so hard to be helpful.  At the end, I told her thank you and now the hairdressers would have a much easier time at Walmart.  Then she's like: "Oh, you are not going shopping there?"  "No." Then she started to laugh. "I was trying to get this out because I thought you were going shopping with your hair like that and I was thinking I couldn't let you do that."  Tooks has an infectious laugh. 
My hair after Tooks cleaned it with rubbing alcohol:
I am facing the camera
We ate a pretty good meal at a blue restaraunt on the Bay, then headed to Micheals on Main for Scott's gig with Jamie Oppenheimer.  I was pretty tired when I got home.  But not too tired to read the last chapter of my Sookie Stackhouse book.  Since I came home, I have reminded myself to find that space again, that feeling I had on my "hospital vacation".  I don't have to feel pressure of things to be done, simply acknowledge that they need to be done, but not right now and let it go.  That or actually do them of course. The sleep study was meant to be a diagnosic proceadure, but it ended up being both healing and educational. It reminded me that there is such a thing as peace, to get things done as they need to be done and leave it be until that time.  

Friday, July 18, 2014


So it's not Lupus or Autoimmune! Blood work came back looking good, my iron is up, not where it should be but definitely an improvement.  We discussed treatment for fibromylagia, a low dose of a specific anti-depressant shown to reduce the pain of fibromyalgia signifcantly, gentle exercise and a chronic pain course.  We are testing for lymes disease as well, based on a very severe reaction my body had to what looked like a bug bite a few years ago.  My sleep study will be on the 28th then if everything goes well with the blood test and sleep study I should be appointment-free for a month :).

I remember wishing it wasn't fibromyalgia, because there is still so little known about it, and it flares up so suddenly, but after hearing that my symptoms may be from an autoimmune disorder...well I breathed a sigh of relief when my nurse said that it was looking like fibromyalgia was the culprit. At least with fibromyalgia you know the pain isn't signifying injury or sickness, with autoimmune, you are acutely aware that your own immune system is attacking your organs.  Pain sucks, but pain with fear is much worse.

I have more hope now.  Now I have a plan.  The medication is suppose to take 4-6 weeks to really work, just in time for my online courses to start.  I was getting scared to commit to anything, and there's still going to be things that I can't commit to for another month or so just in case I  have a "bad" pain day.  I'm also going to have to learn to say "No." to more things in the future so that I don't stress myself out and cause another flare-up.

Thanks to everyone who has offered me help, massages, an ear to listen or eyes to read.  I still may need to call upon you while I wait for the treatment to kick-in.

Thursday, July 17, 2014

Both Sides

Monday appointments; Counselor then Nurse Practitioner.  The counselor shed some light on why I have such a hard time speaking up for myself in vulnerable medical situations, which was surprisingly reassuring. It's always nice to be reassured that your abnormal behaviour is normal behaviour considering.

I had a fibromyalgia "test" done.  I put the word test in those slightly annoying quotation marks because there is no definitive test for fibromyalgia, more like a series of symptoms that point to it being fibromyalgia when the things that can be tested for turn out negative.   The Nurse presses on 18 points of your body, you tell her which ones send a shooting or sharp pain when she applies pressure.  I had 10 of the 18 points which is on the lower scale or inconclusive.  The nurse suggested more blood tests, they will be looking for Lupus and other autoimmune diseases and re-checking my iron and hemocrit levels.  She also booked me an ultrasound to check for fibroids or other uterine growths.  I go in tomorrow to get the results.

So this is the real part of my journal: I get anxiety before any medical appointments, I usually cry after them just as a release after all the anxiety I was feeling.  This time, after having my trigger points pushed, I was in a lot of pain, especially because blood was taken from right beside one of them (which is the first time in a long time I felt like puking when my blood was taken, I certainly couldn't pretend that I didn't know that there was a needle stuck in my arm).  It felt like my arm had been burned to the right of the insertion point, then so much muscle pain, I couldn't bend it all the way, or really even use it.  It hurt to walk.  I kinda felt beat-up and weepy (my poor NP, kept apologizing as she did the test).  Scott was there.  He held my hand during the counselling session, he held the trash can up when I thought I was going to puke when my blood was taken, he opened doors for me, helped me climb in and out of the van, he took me to Waboras and didn't laugh at me when I was having a hard time using my chop sticks.  He held out his arm for me to take as support while we went up and down steps.  He listened, and did not advise.  He didn't balk at me wanting to take a walk downtown at 11:00pm (though he would have to drive us downtown).  He was amazing.  Months ago, when my symptoms first started getting bad, I remember asking him if he still wanted to be with me, that it would be hard work, that taking care of someone in pain is draining.  He said he loved me, he wanted to spend the rest of his life with me and yes he would take care of me.  It was shortly after that when he began washing my hair so I wouldn't have to see it falling out in clumps.

Funny how we perceive certain situations as negative.  I quit my job because it had become stressful,which was stressful in and of itself. Some conflicts arose that quickly washed out those in my life who due to their own life circumstances would not or could not be supportive during this stressful time.  People came out of the woodwork to offer me support and love and Scott and I grew closer then ever.  We had always been very independent in certain ways, never quite wanting to admit to ourselves that we needed each other in any way that wasn't romantic.  Our relationship has matured and trust has been built.  The baggage of our unfaithful past partners has been taken to the end of the driveway.  Sometimes the shit hitting the fan is just a great way to make the ground more fertile for future growth.

Saturday, July 12, 2014


So here's the deal, I'm going through a rough time.  I have been for a while.  So I'm going to journal about it, and those who want to know can read about it, and those who'd rather not can simply not read about it.  Here's the other thing, I don't like talking about it to people's faces in public, it makes me uncomfortable. However since on my bad days I have a limp, that makes it really hard, because well meaning people ask me questions because they care, and that is awesome that they care, but sometimes it makes me very self conscious, and then I bumble through a quick explanation (which we haven't found yet) which sometimes leads to a much longer explanation that I usually just let dwindle away and smile an uncomfortable cheerful smile and be all like "It's all good though, we'll figure it out."

Some days when I'm tired or a headache has come on, I stutter and slur my words I even overly produce saliva which added to a mouth that doesn't want to work properly-well you get the picture.  On those days I usually just try to get out of the social situation as quickly as possible.

My muscle fatigue and pain has lead me to stay at home a lot more.  Two weeks ago I made the mistake of going for a walk downtown in the evening when my legs were a bit sore, by the time I got to my front steps I could no longer put weight on my right foot.  Thank goodness that my partner was with me and I wasn't alone with the kids, I wouldn't have made it back up the hill, and my youngest still needs a booster seat so calling a taxi would not have been a very safe option.  Needless to say, choosing to go on a ten minute walk now takes a fair amount of consideration for me.  I didn't want to have a cane, I thought: I don't really need a cane.  I have days where I hardly limp at all.  What would people think of me? I don't even have a diagnosis where a cane would be necessary. It's just pain. More people will ask questions, questions I don't have answers to. What if I bring it and I don't end up needing it, am I just going to walk around with this cane and look like I'm looking for attention?

I had so much insecurity about using a cane, that I either stayed inside when I really wanted to walk, or I put up with way more pain then I had to getting back up the hill to my home.  So one day my son asked me to go into the antique store,  and I said "sure".  Right by his favourite things to look at was a barrel of canes and walking sticks. There were some really pretty walking sticks, all gnarled and stained pink and purple.  But there was this one...the top of it was naturally shaped like a femur, it had a more natural stain and a crack but something about it, didn't feel like a "I've given up" cane.  Let's face it is my biggest fear about the whole thing, that getting a cane is like giving up and in to whatever this is. So when I brought it to the counter, the man told me that the cane had belonged to an auctioneer, that he not only used it for his limp but also for his livelihood.  That made me feel better about it.  Having something to lean on was going to be okay, it was cool looking and had good energy.  So I left the antique store feeling a little self-conscious and figuring out the best way to use it to keep some of the weight off my sore leg.  I got the hang of it, but when I went into a restaurant where I know the manager, I felt a little foolish because I still felt a bit like do I really need this? I answered a few questions awkwardly, but what was great about it was while I was standing looking at the dessert fridge, I could lean on it. Usually I would be needing to shift my weight from foot to foot, stretch and move around in one spot to be comfortable. I didn't need to do that at all, standing in one spot was relatively painless.   After that, the kids and I went for a further walk, I didn't spend my time downtown watching the clock, worried that if I got tired we wouldn't make it back up the hill.  This little auctioneer's stick was going to get me up that hill, no matter how much my leg hurt.  It struck me that I felt so much freedom from something that always been a symbol of limitation to me.  I accepted this "cane", in fact buying it had really brightened my outlook on life to come.  I wasn't going to lose my freedom, I was going to be able to go for longer walks with my kiddos, even walks by myself.

I got home and explained my happiness at my new found freedom, how my outlook had changed, how before I was having pain and mobility issues I saw canes and wheelchairs as confining and restrictive but to someone who cannot travel easily otherwise these things can be symbols of hope, freedom and normality.

So the reason I'm writing tonight and not at Nuit Blanche, is because my pain isn't just in one leg or even just my legs for that matter.  The next day, my other leg decided it was going to hurt even more than the one I was using the cane for and the arm that was holding the cane to help me walk was feeling quite painful as well.  I am grateful for the day of freedom the cane gave me and the new perspective, but using a cane is just not going to work for me as my pain is not simply located in my one leg and the cane actually seems to exasperate it in other places.  

Illness is simply another catalyst for learning, and I am thankful for everything I have learned so far, about myself, about friendship and about different human perspectives, but sometimes I really wish I could learn about this stuff by watching an after-school special.   

Thursday, September 12, 2013

I'm Not Getting Married. Now Where Am I Going To Wear My Dress?

What if, what if not all of us are meant to find that one person to spend the rest of our lives with?  What if this in fact, is a rare thing?  What if we are all just playing out a social program instilled in us from childhood?  What if we are meant to meet who we meet, learn from them all we can then part amicably when we no longer serve each other's well being.  What if some of our relationships are meant to be a few nights, weeks, months, years, decades?  What if when we entered relationships we stopped thinking THIS COULD BE THE FOREVER ONE? What if when we were in a relationship we didn't spend it questioning if we can put up with this particular persons annoying or disrespectful habits for the rest of our lives, adding way more stress and of course focus on changing said persons' habits? 

What if we entered every relationship with the mind frame of: let us learn from each other, let us share the things we care about, let us grow as people, let us have a damn good time?  Rather than trying to see if every relationship can turn into a marriage?  This idea of forever can make us feel like we must stick with this person no matter what; no matter how much our interests have changed, no matter how much we are no longer growing, no matter how miserable we are becoming.  All this misery simply because our culture has put such a high value on getting married and having kids as a measure of success. 

This being questioned:  I believe that soulmates exist.  I believe that there are people who are meant to spend their lives together. I also believe that we can have more than one soulmate, that we are meant to share portions of our lives with certain people.  I just don't think that it's healthy for us all to feel that we have failed in some way should we not have fully commited to another person before we die, or that we are weak or didn't try hard enough if we left relationships that were not healthy for us.  Scott and I will not be getting married, we will however for the time being; continue to learn from eachother, share things we care about, grow as people and have a damn good time.  

Monday, May 27, 2013

Life is Getting Shorter

Remember when you were a parent for the first time and all these other older and more experienced parents would look into your exhausted blood shot eyes and tell you to "enjoy it while you can, it goes by so fast"..and you forced a smile and nodded, secretly wishing they'd keep their well formed non-sleep deprived thoughts to themselves?  Yeah well I remember that- vaguely.

 Here I am 7 years later looking back and wondering how I could have enjoyed it more. I see my oldest child, her baby teeth are gone, her smile transformed forever.  I miss her chipped tooth grin.  My son still has all of his baby teeth so I'm taking lots of pictures of him, because any day now he's going to run into the kitchen to tell me one is loose and I am going to smile as enthusiastically as I can and congratulate him, while inside I'll hold onto the memory of those teething nights where he snuggled me so close latched on for hours.

I'm looking at pictures of friends from high school on facebook and I'm always shocked that they are adults now.   Crap, I'm an adult now.  Here we are crowsfeet and grey hairs for all to see.  I am my mother as I remember seeing her so many years ago.  I am suppose to be all knowing, the epitome of all that is adult in my children's eyes...

I am more aware then ever that life is short,  I am looking at my parents thinking about how small our age gap seems now. 

There's a double edged sword when it comes to this realization.  We want to cherish our time, but it becomes too easy to cling to it instead.  Family trips become about experiencing everything together, building memories doing as much as possible, so that we can all have these lasting images.  This of course leads to frustration when things don't work out as planned or when our children don't seem to love doing the things we loved doing as children.   Then at the same time I feel like I want to do nothing but save money for our future so that one day we can travel somewhere really cool and far away.

I'm trying to grow with this realization.  I'm trying to find a balance.  Building good memories, planning for the future, remembering the past and slowing time down just a little bit. 

This time in my life is not all sweet sorrow, it's also motivating.  I'm seeing now that my life is precious and short.  I'm going to go for what I want.  I'm going to work where I want.  I'm going to be unapologetically  myself (which according to my spell check unapologetically isn't a word, and nope I am not sorry for using it.) .  I'm going to wear sundresses to work, have my fingernails done by the best manicurist in town (my 7 yrold).  I'm going to sing and dance on the street with my little boy. I'm going to live where I want to.  To quote some inspiring people: I'm going to live the whole catastrophe and be furiously happy about it. 

Truth is, no matter what age group I am in, my life is short, but it is mine and I intend to have it reflect the awesomeness that is me.

Wednesday, October 10, 2012

Goodbye Pride, Hello Healing

I was talking to a friend/colleague about a year ago.  She mentioned that 5 years after her split up with her husband she was finally feeling settled.  I thought to myself, heck, I was okay with my marriage ending the day I asked for a divorce.  I figured the circumstances around her divorce must have been less cut and dried then mine.  I felt for her that she had had such a hard time "settling" and how lucky I was that I was able to get over my marriage breaking up fairly quickly.  I prided myself on my ability to leave behind what was a damaging situation and just be free of it. 

I am going on 4 years since my separation date and I'm realizing that I am not free of it at all.  In fact, I am imprisoned by the fear that my whole world is going to be turned upside down in a matter of days -again.  I had an anxiety that I could not name,  I felt like I had to control everything in my life because 4 years ago everything spun wildly out of control.  In a matter of 2 weeks a series of letters and emails told me everything I believed about my relationship, my family and my finances had all been lies. I trusted  my husband.  I don't just mean I didn't worry about him cheating on me when he went out, I mean we had a joint email account and every time I saw an email from Michelle, Katie or any other female name that was not my own, I did not read them.  I figured very confidently, they must have been spam.  I don't know many women who wouldn't open those emails. 

I would open them in a second now. 

I also panic whenever Scott and I are having a rough time in our relationship, if a marriage that seemed to be going so well can suddenly be so wrong, what about a relationship that has its problems?  Deep down I have not fully committed to Scott,  there's a part of me that's ready to run, there's a part of me that cannot believe that this man will love me forever.

This distrust has spread into all aspects of my life.  There are very few people in my life who I do not suspect of talking behind my back or using me in some way.  When someone does something that I find to be inconsiderate I have a hard time believing that it was unintentional, 5 years ago, someone would have had to go out of their way to prove to me that there were hurtful intentions involved.

All this paranoia for what?  I do not want to be any one's fool again.  I feel stupid, how the hell did I not see what was happening in my last marriage?  The signs were everywhere and I blindly trusted this man.  He is a very nice guy.  He's the kind of guy who will change a stranger's flat tire, help a new neighbour move in, walk an elderly woman across the street (I've seen him do all these things myself) if this very nice guy could screw me over then who can I trust?  I certainly cannot trust my own judgement in these matters of the heart.  That's what this really is about.  I cannot trust anyone else, because I no longer believe I can trust myself.

Pride would have me keep everyone at a safe distance, rather than be a fool again. Fear would have me stew in this anxiety and steal the opportunity for moments of genuine laughter and tears with a friend.  This fear has me cling to grudges as if they were lifeboats,  hurt me once and I will not give you a chance to hurt me again. 

Okay pride, this is where you suck it.

He hurt me.  He hurt me a lot.  I'd like to pretend I didn't really love him, but I did.  I can't look at the pictures of him holding our newborn babies without crying (so I don't look at many photographs of  our children as babies, which is sad in itself). Scott once said "No one takes pictures of the bad times, that's why it hurts so much to look at them."

I understand my anxiety now, I understand why these negative situations keep re-occurring in my life. 

I'd rather be a fool for love then this cynical and anxious person I have become.  It's time for me to realize that being naive is nothing to forgive myself for.