Wednesday, August 6, 2014

It's not you, it's me.

I use a cane when my legs feel weak, or when my joints complain when I'm putting too much weight on them.  I need to have it with me, because I never know when my legs are going to say, "Nope, not doing it anymore."  I talked about the freedom the cane gives me, it gives me a feeling that I can be okay, I will not be stranded in the supermarket or downtown should my legs become ornery bastards.

There's a draw back though, people see me and they want to know what happened.  "What did you do to yourself?" they ask. "Did you hurt yourself?"

Before this goes any farther, I know they mean well.  I know they are concerned about me. I know they are coming from a place of love. Which is why I feel like a dick writing this, but these are my feelings at the time that they ask:

Them:"Oh my God, Is that a cane?  Are you okay?"

Me in my head: Smile Amber, Don't look tired. Be positive.

Me outloud: "Yep it is, I'm fine though."

Me in my head: Please don't ask anything else. keep smiling Amber, oh wait, does my smile look unnatural? Crap my leg is starting to hurt. Damn the meat section! It's always so cold here.

Them: "But you have a cane!"

Me in my head: They are going to make me explain, my legs hurt, I need to finnish shopping, oh god they look so concerned.  Why is it that I'm great if people are apathetic, but when they show general concern I feel all weepy.  Don't cry in the super market Amber, they might hug you and that would be the dam breaker. Smile.

Me outloud: "Yep, it's hard to walk sometimes.  But the cane helps out, I bought it at the antique store."

Me in my head: Please don't ask what's wrong, because I'm not sure what is wrong, I know what theory we are working on at the moment but I feel like a fraud because there's so many other things we are looking at.  I don't want to say we don't know yet, because that sounds so pathetically dramamtic.  They are bound to ask more questions about my symptoms, my tests (insert images of tests and proceadures, nurse and dr.'s offices, bad mornings etc).  Shit they are tilting their heads, not the empathetic head tilt, you guys are killing me here. Switch cane arms, this one hurts.

Them: "What's wrong though?"

Me in my head: Shit.

Me outloud: "It's looking like fibromyalgia."

Them: Gasp, Oh no!

Me in my head: SMILE.  Explain that everthing is fine, you know lot's of people who have it, it's just about finding balance, taking breaks when you need it. Don't look scared, don't look upset and don't look like you are trying hard to look happy.  Don't mention that it may be something else, you'll just have to explain that too. My legs are really beginning to ache now, I have to get moving, would it be rude to cut off the conversation right now?  They are asking because they care but I'm tired and I feel so drained talking about this.

Me outloud:  "It's okay, really.  I have met other people who have it, they lead relitively normal lives, it's just about learning to read my body, to take a rest when I need to."

Them:  "Oh, is it just in your joints?"

Me in my head: (immediate full body and memory scan of where and how it hurts) I feel fuzzy, crap I don't even know how to put this into words.  

Me outloud: "Ummmm, sometimes in my joints. It's really kind of everywhere. (that sounds aweful, not looking for sympathy, really) My skin sometimes hurts... like I'm bruised, and my muscles, they  ummm get...achey, tired sort of." (I'm having a hard time finding words again, I'm getting tired, get out of this conversation before your stutter, Amber.  It's so embarassing how they look at you when you stutter)

Them: "Oh, I'm sorry to hear that you are going through this."

Me in my head: I know you are, thank you for caring.  My throat is tightening, Smile and be positive.

Me outloud: "Thanks, but it's really not that bad.  I'll be fine. (smile). I'd better get shopping now."

Just to let you all know, again, I know that everyone who is asking me this is doing it out of love and concern for me.  But it doesn't change the reality of it for me.  Over the internet or facebook messages is easy for me, no one sees my face or hears my voice, I can answer at my leisure.  There is no pretending and I can cry if I feel the need, in the privacy of my own home.

Yesterday was a bad day for me.  I was exhausted, in more pain then usual and struggling with medical choices and possibilites.  Stress makes it harder to cope with the pain, the fatigue makes it harder for me to form sentences.  The more I stutter, repeat and start over my sentences the sadder I feel about the loss of my communication skills.  I used to pride myself on my communication skills, well we all know what happens before a fall, don't we?  Yesterday, a friend approached me and asked me about my cane.  She is a good person, we've had many a personal conversation.  I, however, was tired and weepy. So I just turned to her and said exactly what was on my mind, rather than drain myself with a conversation that I simply did not have the energy to keep myself positive for: "I don't want to talk about it right now."

She looked hurt.  I didn't mean to hurt her feelings if I did.  But part of learning to take care of myself, is learning to say "No."  I was making myself feel obligated to do something that is draining for me.  I am a grown woman, who needs to make choices that are best for her, I can't let the thought of someone else getting their feelings hurt, stop me from taking care of myself.  Eventually, I won't feel guilty about that.

I love my friends and family, I know they want to show their support.  I feel loved and supported.  But if I seem aloof when you ask me questions in person, it's because it's painful and draining to talk about and frankly I don't know the answers.  I hate showing emotion in public (other than cheerfullness), and somedays I am hanging on by a thread.  Everyone wants to know how they can help, sending me messages is awesome, reading my blog to understand what is going on is great. Prayers are welcome. Perhaps, if you see me in the super market, you could just smile and act as if the cane isn't there, because normality is one of the greatest gifts I could recieve at the moment.

Tuesday, August 5, 2014

Big Girl Panties

I went for my follow up for the sleep study expecting to be pressured into purchasing an oxygen machine for apnea.  I even practised in my head how I would tell him that I was going to  take stress reduction courses before I purchased one to see if that would help. That is not what happened at all.

According to my sleep study, my sleep was good, I had REM when I was suppose to, deep sleep when I was suppose to,  I slept for a great amount of time, I moved my legs around quite a bit (but that probably has something to do with my pain) and I had very mild apnea otherwise he said I had a great night of sleep. The day tests however were concerning, day tests mean you get up for an hour and a half then sleep for 20-30 minutes, rinse repeat 3 more times, apparently I fell asleep in less than 5 mins or so each time and stayed asleep until woken.  That is very rare, especially in someone who recieved a good night's sleep.  The Dr. thinks that there must be something wrong in order for me to be that tired, he noted my extremely low iron and that, that may cause some of it.  I talked to him about prolactin levels at night being higher and that I have begun lactating, does that mean anything to him as a sleep expert?  He said "yes, it does." Turns out he was one of the main researchers that discovered that prolactin levels were higher at night (this is cool to someone who gives breastfeeding support).  As such, he said he wanted to be the one to test for my prolactin levels, at night.  He is concerned that the problem is in my brain, he asked if they have set me up for an MRI, I said "No."  He said that he believed that the problem is central, that he will go for the more invasive proceadure if it means getting the answers sooner. He dictated a letter to my NP stating that he wanted to do a night-long prolactin level test, that he recomends that I go see an endocrinologist asap, and suggested an MRI.  I'm pretty sure I know what he is talking about, he's concerned I may have a tumour on my pituitary gland, these tumours can grow and shrink and release hormones like prolactin.  They can also put pressure on other parts of my brain and cause other symptoms that are not hormone related. These tumours respond well to oral medication and rarely need surgery or radiation treatment.  He was vague though, in his explanation, which could have something to do with my kiddos who were sitting on the floor doing word searches.

Never walk in to a Dr.s office expecting something, it's like a slap in the face when it's not what you think it is.

Today is the day that I have to call and make my ultrasound and mamagram appointments and I'm really not feeling it.  I feel like once I commit to these tests I am admitting that this may be more than low iron and a pain disorder.  I don't want to do that.  I don't want to make the calls alone.  I want to be strong, it's easier to look strong and to sound strong when there is someone in the room watching me.  My children make me strong, Scott makes me strong, I want to be positive for them.  I'm so tired I'm finding it hard to be positive just for myself.

Truth of it is, it's time to put on my big girl panties. I don't even know if there is a tumour. I recognize that it is good to admit that I have fears and to not supress them. It's okay to admit that, yes, I'm tired. I know it's time to get this stuff done.  Knowing that you are reading this is another way I stay strong, you are my witnesses, I find positive things to think and write because of you, I look for lessons so that I can pass them on, so that this whole experience isn't for nothing.  So, thank you for being my sounding board, my support and my friends.

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 while 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 laughing 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.