HOLIDAYS!!!

It has been awhile since I've written.  Partly this is because there isn't much new to report - I am STILL waiting for my next rheum appointment, and next round of IVIg.  Disease-wise, things are pretty much status quo.  My muscles have been really stiff lately, not sure if that is related to DM or I just need to be more consistent in my yoga practice.  No muscle weakness yet though, so that's good.  I've also been really tired, but again, I'm not sure if that's related to DM or just because I have been really busy lately and somewhat stressed so not sleeping very well (ah, the joys of a thesis!)  My rash is pretty much the same, except my upper chest is red and itchy, which is new.  This could be due to sun exposure though, sun irritates the rash so this often happens in the summer, even though I try to be very careful about sunscreen.  And it has been very sunny for the last couple weeks - yay!  My knuckles are still red and have been kind of scaly (weird) but that seems to have mostly peeled off.  And my upper arms are still red too.

So that's my status report.  Reading back over it, I guess it highlights one of the challenges with a disease like DM.  Is this an early symptom of disease recurrence, or is it just due to other lifestyle factors?  It can be really challenging to differentiate.  Often it is impossible until you get sicker and there is no mistaking it for anything but DM.  Obviously it is better to treat before that happens, but sometimes that is difficult - either because you don't recognize early symptoms as a disease, or because you can't get in to see your doc for months and months!  Ahem.  Or, if you are me, and you tend to deny or "explain away" early symptoms makes it challenging too.  I'd much rather just be tired like a normal grad student than tired because of DM!!

Anyway.  In more uplifting news - WE START HOLIDAYS ON FRIDAY!!!!  YAY!!!  I'm really looking forward to leaving school/work behind for a week to enjoy the beautiful summer with family and friends.  Although, one pain in the ass that I didn't foresee back in the dark ages when my rheum appointment was given to me - it is scheduled for next Monday, when we are supposed to be at the lake :(.  So we have to come back to the city for the day for that bloody appointment.  I thought about trying to reschedule, but again, they way her office runs I'd probably have to wait until Christmas.  So we have to sacrifice a precious summer lake day to fight with my rheum about treatment options.  Boo.  But what can you do.  Hopefully it rains on Monday (and then is 30 above and sunny the rest of the week!! :)

My hubby and I - so happy together

Splash!

Can you tell I love to board? 

Extreme tubing - happy we survived another round!  :)

Anyway, that is all my news for now.  Wish me luck in my appointment on Monday!

Summer Sunshine... and a little Whine

I've already discussed how much I adore spring.  The biggest two reasons why I love spring are 1) Winter is over and 2) SUMMER IS COMING!!!  So you can imagine that I am totally in my element now that we are indisputably in summer.  Almost uninterrupted for the past week, the sun has shone, everything is a beautiful, vibrant green, it has been warm to hot out, and the days are still gloriously long.  Ahhh.  I love it!  I am so excited to go to the lake this weekend, and hopefully get out in the boat!

Otherwise, not much has changed lately.  I am still waiting for my next rheum appointment and round of infusions.  Fortunately, my rash has stabilized since my last half-treatment - it is still there a little bit on my left upper arm, the knuckles on my right hand, and my chest (oh and my eyelids and cheeks, but it never seems to get better there so I'm not sure if that counts).  It is still better than what it was, and most importantly it hasn't been getting any worse.  I've been trying to be careful about sun exposure, because that REALLY pisses off the rash, and so far I've been doing all right that way.  My last dermatologist in Edmonton practically wanted me to wear a burqa whenever I went outside!  I haven't adopted that strategy, but I am pretty neurotic about sunscreen and have lately started wearing hats as well.  To keep from glowing in the dark, I have started using a sunless tanning moisturizer, which at least gives me a bit of color :)

I haven't noticed any muscle weakness thankfully, but my muscles have been quite stiff and tender to the touch lately, which is a bit worrisome.  It is not bad enough yet to go back on the prednisone before my next appointment though!  We'll see how the next few weeks go.

Now for the whine.  Coincidentally, in my readings over the last couple of days, I have come across three new studies on Multiple Sclerosis.  So many people in Canada, and unfortunately in Saskatchewan specifically, suffer from MS, so it is great that research is being done on this subject.  One of the studies examined the effects of MS on pregnancy and birth outcomes, which is an important topic since MS tends to strike women around their childbearing years.  It involved over 400 women with MS, and found that the disease does not seem to adversely impact the birth process or the health of the baby.  Obviously, this is great news, and I am happy that research is being conducted to help women and families coping with a potentially devastating disease.  However, I can't help being a bit envious.  Because DM is so rare to begin with, and it tends to strike older women, there is next to no research on pregnancy and birth outcomes with this disease.  The best study I have come across on this topic in DM looked at 7 patients, who obviously varied widely in terms of disease severity and the medications they were using.  This is a highly relevant topic for me, as I am 28 years old and my hubby and I would like to have kids one day.  I guess this just highlights one of my frustrations with this disease, and that is its rarity and obscurity.  There is so little research being done, and perhaps rightly so when there are many more prevalent diseases like HIV, diabetes, and cancer that we have yet to beat.  But it is just frustrating when you are coping with a rare disease - there is little hope of a cure or even novel treatments being found, because there is precious little money, resources and even patients for trials in DM.

I hope that doesn't sound wrong or selfish - I don't mean to imply we shouldn't be doing research on these other diseases, or that I begrudge the advances that are made!  Quite the contrary, in fact; as a healthcare professional, as a fellow patient myself (and heck, as a human), I am always happy when medical research is able to find ways to alleviate suffering and improve the quality of life of people living with disease.  And I certainly do not wish DM on more people so we can have better studies!  I guess I just wish I didn't feel so alone in this fight sometimes, you know?

Dreaming...

[Disclaimer - this post has absolutely nothing to do with dermatomyositis!  It is just for fun].

Do you like my new house???

Well, actually it is not mine yet - it is the Kinsmen Dream Home Lottery house this year.  And I have a good feeling that we are going to win it!

Not that I'm greedy or anything - certainly the two of us do not need a 2630 square foot home!  No, we will live in it for a year (to avoid paying extra tax) and then sell it and use the money to pay off our current house.  We'd have some left over of course, so we'd use it very sensibly - top off our RRSPs and tax-free savings account contributions, pay off the outstanding money we owe on the cabin, finish the deck and fence in our yard as well as finishing our basement, donate to a few causes we support, and give each of our siblings a bit of mad money to play with.  And let's face it, since I am no saint, the hubby and I would take an extended holiday in Europe!

I'm not going to lie, it would be fun to live in that big house for a year like hoity-toity rich people (for the first and last time in our lives!)  Specifically, I would love the big library room at the entrance to the house.  It would be lovely to finally have a place to put all of our books!  We would also have some great parties, with the huge kitchen, deck, and walk-out basement.  And since we do not currently have a fireplace in our house, I would enjoy that over the winter, too.  But we'd stay sensible, sell the big house after our year was up, and move back into our smaller (but still lovely) home - albeit with a few upgrades :)

The best part of this scenario would be the removal of financial stressors from our lives.  I fully realize that we are not the hardest-done-by people in the world - far from it!  But let's face it, it would be lovely to not have a mortgage to worry about.  All in all, it wouldn't be a drastic, life-altering amount of money; we'd still need to continue to work and live regular lives like everyone else.  We'd just have a bit of breathing room.  Friends of ours from our Edmonton days won $38 million in the lottery (no, unfortunately not close friends - acquaintances from our frisbee team :) - and while it's easy to believe that amount of money would make life perfect, I think it would bring its own set of stressors.  Namely, everyone and their dog hitting you up for money.  As my hubby will attest, I am the biggest bleeding-heart pushover ever, and I would have a really hard time turning anyone down for anything with that kind of money.  Plus, we've all heard the stories of people who won gobs of money in the lottery and ended up worse off than before.

Also, let's face it, winning this house is not nearly as pie-in-the-sky of a dream as winning the lottery.  After all, this is local - someone around here is going to win it.  Hopefully it is me!  This doesn't make me greedy, does it?!

Ugh - Take 2

Apologies again, I am still feeling a bit down and frustrated.  This is basically a continuation of my rant from the other day, so if you didn't like that entry, you won't like this one either!

Sure enough, I got an appointment card in the mail on Monday from the rheumatologist.  (I'll never understand why they can't just phone me with the next appointment time.  But whatever - at least it reached me before the postal strike!)  My next appointment is ... drumroll... July 26th.  Yep, awesome.  That will make it a month and a half since I received my last ridiculous half-dose of IVIG before I even see her about rebooking another one (which will, guaranteed, take at least a couple weeks after that before I can actually get in for treatments).  So at least two months between treatments, and the first one was a half-ass treatment at that.  Thanks, Dr!  I'm so glad we had that great discussion last month about receiving a FULL COURSE of IVIg.  Now I just have to pray that the rash (and the muscle symptoms!) stay manageable until then.

On that note, I saw the dermatologist that she referred me to today - despite the fact that I have seen 2 derms in the past that had nothing more to offer, she wanted me to see another one in case a magic solution to the DM rash has been secretly discovered in the past couple years.  Sure enough, he spent about 10 minutes with me - looked at the pictures I have of the rash when it was bad in February and again a few weeks ago, and he examined how it is now - and he said "Wow, you sure respond really well to IVIg.  If I were you, that's the route I'd want to go!"  THANK YOU.  Now can you please say that to my rheumatologist so I don't have to fight her every time I need treatment??  (The short story - I took 2 hours out of my day today to get a prescription for a moisturizer!)

I'm starting to seriously consider trying to find a different rheumatologist.  I have had nothing but problems since I started seeing her two years ago - and I had another rheumatologist before her, so I know how things should work!  We apparently just do not speak the same language, and I am so tired of fighting to make myself heard constantly.  I had such a terrible time with her in the beginning though (months and months without treatment because she didn't believe that I was having a flare because my CKs were normal), that I am also terrified of starting over with someone else.  At least she knows my history and the way I present with flare-ups now.

On that note - I am really sick of doctors altogether.  Today, as I was bored waiting for my derm appointment, I examined my day planner and did a quick tally of how many medical appointments I've had in the past while.  Since the beginning of May (only 6 weeks), I have had 10 medical appointments!!  (And this is only medically necessary appointments, like rheum, optho, or family MD, not the acupuncture or naturopath appointments I've been trying on my own).  That is more than one per week!  Each one takes at least an hour (usually more) out of my day.  And the crazy thing is, I am a DM patient who is supposedly doing quite well!  But how am I supposed to hold down a job when I am constantly leaving for appointments and tests and treatments???  How do people do it?

Do you want to hire me?  I'll be a great employee for the two days per week that I am actually able to work!

Ugh

(Warning - I am feeling in need of a rant today.  Apologies in advance for being a bit of a downer!)

Well, it is really not coincidental that I am feeling down on an IVIg day - first infusion in a few months today.  Fortunately, all went well - no "reactions" this time, finished the whole dose without incident.  Now just feel vaguely flu-ish, but nothing outrageous or anything, so I'm really not sure why I'm so down.

Partly I guess it is frustration with my rheumatologist.  Sometimes I feel like I need a translator when I go in to see her, because the "plan" from her perspective rarely seems to be the plan that I thought we agreed on at my appointment.  Last time I saw her, we agreed to go back on a regular, 3-month course of IVIg to hopefully get rid of the rash and forestall any muscle issues.  For me (and from what I know, for most people with myositis) a regular course is two days of back-to-back treatments once a month for three months.  However, today I found out that she only booked me in for a one-day treatment, because she wanted to "see how I do."  Ok, fine, but why didn't you tell me this at my last appointment?  Now before I get another infusion, I'm going to have to get in to see her - and she runs pretty much the most inflexible clinic ever.  So I'll probably see her in about a month and a half.  Then, based on past experience, it will take another 2-3 weeks to set up another infusion.  This means at least another two months before I get my second dose.  It is just such an unnecessary waste of time!!!  This is one of my biggest pet peeves about doctors in general - they do not think their patients' time is of any importance whatsoever.  But for me, again, this is going to be another wasted 2 months before I get another infusion, and in the meantime, does this half-dose count as one of my three treatments?  Or am I going to need to go in for three MORE after this?  Again, it just means more time of me rearranging my schedule, waiting for a totally unnecessary appointment (does she really think that either myself or the nurses wouldn't call if there was a problem with the infusion??  Why does she need to see me AGAIN??), and then waiting to see if it will work.  Although I realize this is totally unfounded, I worry that buggering around with the infusion dose and duration is going to make it less likely to work when I need it.  Last time I only got a one-month treatment because of an infusion "reaction" that freaked everybody out (seriously, a little bit of facial flushing and that was it) - so they stopped my second dose early and I didn't get my other 2 months of treatment.  Surprise, surprise, it was barely a month and a half later before the rash came back.

I'm also starting to feel really stressed out about my money/job situation.  I'm wrapping up my research project for my MSc in the next couple of weeks (whew!) and then will begin the daunting task of data analysis and writing my thesis.  I had planned to take a few months to do this before returning to work full-time, but it is starting to look like I may need to look at going back to work sooner for financial reasons.  All in all, this isn't a big deal - it may take a bit longer to finish my thesis this way, but hopefully if I can really put my nose to the grindstone for a few months, I can still get it done in decent time.  The problem is deciding what job to take, and how best to balance it with the thesis and my health issues.

Here are my two options:
1. Continue to work with my MSc advisor as a research associate.  Nice hours, more flexibility for IVIg treatments, dr appointments, etc.  Less job security - the position will continue as long as the research grants continue to come in, but there are no guarantees.  I love working with my supervisor, he's great to work for and we get along really well.  Less money.  Low job stress.  No clinical pharmacy work (which I would miss), unless I could find something on my own on the side.

2.  Coordinator of pharmacy services for the health region.  More money, longer hours, good job security.  Less flexibility - I have no idea how I would manage to "sneak away" for two days per month for IVIg when I need it, and all the doctor appointments I need to attend would be extra inconvenient.  A clinical pharmacy practice wherever I would like to establish one.  Probably some boring administrative work.  Limited research opportunities.  More stressful, at least until I established myself there.

Both opportunities would allow me some teaching time, which is good.

But now, what to do?  It is getting down to crunch time, and I still can't decide!!!  Pros/cons of both seems pretty much equal, whether I'm turning them over in my head or laying them out on here.  My hubby tells me not to stress, that there would be opportunity to switch later if I want to - but I can't really count on that.  If they hire for the health region position, who knows when another one will come up.  And there is no way of knowing how long the research funding will last either.  So I really feel like a lot is riding on making the right decision NOW - I just don't know what that is.

All right, enough whining and stressing for tonight.  Hopefully now that I've gotten this off of my chest I will sleep better!  :)  Thanks for listening!  

Accomplishments... and Insomnia

It has been awhile since I've written - I have had a couple of crazy, but pretty amazing weeks!

For the past several months, I have been training to run a half marathon here in my home city.  It is the first time I've run this particular race since being diagnosed with DM, and only my second race in total since my diagnosis.  I always hesitate to get too excited about things like this, because I know I can't count on staying healthy.  Case in point, after months of training, I started to relapse again a few weeks before my half marathon last fall.  Right up until race day, I wasn't sure if I'd be able to run it - in fact, I'd resumed IVIg treatments just the two days prior, so was still feeling kind of crummy from those.  But I decided to try to run, and stop if I felt too awful.  Fortunately, I managed to push through some discomfort and finish a pretty decent race - although it was a slightly slower time than what I had hoped to run, it was still respectable (1h 51min 30 sec).

This year, my training had gone really well.  I was training with a great group of runners, and spring is my favorite time of year to run - even though the weather can be unpredictable, you know it is generally going to keep getting nicer.  The days get longer, the sun gets warmer, and you have lots of time to appreciate the beauty of the last pieces of ice drifting downriver or the leaves turning green on those long runs!  Overall, I felt really good throughout my training, and it is such a gift to feel your body getting stronger and faster.  After 4 months of speedwork, hill training, and 20+ km weekend runs, the big race day was last Sunday.  My main goal was to beat my time from last fall - but my ultimate, ambitious goal was to try to run the time I had wanted to hit last fall, 1h45mins.  It was a COLD day here - only 4 degrees and no sun to be seen; but as always, the race atmosphere is tons of fun and the adrenaline pumps you up!  Also, I knew my hubby and parents would be stationed at various points throughout the race to cheer me on and give me a much-needed boost over the long race.  I ran the first half of the race right on my target pace of 5 minutes per km.  At around 10km, I was feeling pretty good, so I decided to pick up the pace slightly.  Amazingly, with 6km or so left, I was able to pick up the pace even further.  I maintained this fairly aggressive pace right up the killer hill at kilometer 20, and even though I wasn't able to pick up my pace anymore at the finish as I'd hoped to, I crossed the finish line in 1h42min and 2 seconds.  An incredible time for me!  I placed 23/573 female runners in the event, and 104/988 runners overall.  I was pretty thrilled!

All right, for those of you who don't care about sports, I'm done talking about running now :).  A few hours after the race, I hopped on a plane to Montreal for the Canadian Pharmacists Association conference, where I was giving a brief presentation of some of my thesis results.  Needless to say, I was pretty tired when I got there - however, because I only had a couple of days there I wanted to make the most of them.  I went to lots of the conference talks, but socialized a lot too.  I am not a big fan of public speaking and so would have preferred to get my talk over with earlier, but I wasn't scheduled to speak until the day before I left.  But my talk went really well, I think (I told myself only I noticed the slight tremble in my voice amplified by the microphone!).  I was able to answer the questions and got some great feedback afterwards.  Since the conference was almost finished by this point anyway, I decided to treat myself with some time off to explore Montreal.  A friend and I had a lovely lunch followed by some shopping and people-watching downtown.  It was such a relief to have both my run and my talk finished, I finally felt like I could let my hair down.  That evening I spent more relaxed time wandering around downtown Montreal.  I just love being somewhere different, and Montreal is a beautiful change of scenery!  (Although I have to say I was embarrassed by how rusty - or should I say, nonexistent - my French has become).

The next morning, I boarded another plane to Edmonton to see my favorite band of all-time, U2, live in concert, with my hubby, sister, and her boyfriend.  They were driving down and able to pick me up at the airport.  I was worried my expectations were maybe set too high, but the concert was AMAZING!!!  We had some great laughs afterward too.  The next day, we drove back home.  Phew!  Then I basically slept for two days to recover!

The only downside is that my rash was spreading and getting super itchy over the past couple weeks, so I broke down and had to start taking prednisone last week.  Hence why I am still awake writing this at 4:00am on a Sunday night!  Sigh.  Oh well, I am scheduled to start IVIg again this week, so hopefully that will knock out this rash and I can get off the prednisone.  Otherwise, I have been feeling good muscle-wise so really can't complain.  But either the prednisone, my neurotic nature, or a combination of the two have got me stressing out a bit lately about the future.  Finishing my thesis, finding a good job, saving money, all of that fun stuff.  Also partly why I am still awake now!  But I don't think I'm going to find any magic answers tonight, so back to bed to try and get a few hours of sleep.  Goodnight!

A Little Help from Old Friends

I went to Vancouver this past weekend along with a friend, to visit another good friend .  It was a great trip - lots of sightseeing, visiting, and laughing packed into three days!  Vancouver even greeted us with uncharacteristic bright, sunny, warm weather upon our arrival, and even though it was short, it was definitely sweet!  We spent some time walking and goofing around on Granville Island, travelled to Whistler, and walked around downtown Vancouver and one of the beautiful forests in Burnaby.  Also lots of time playing with my lovely niece, who gets cuter every day.  I already miss waking up to her smiling face!  It was lovely to get away and relax - I didn't think about my thesis all weekend, a welcome break from something that generally occupies every waking thought!

But the biggest thing I took away from the weekend was the importance of spending time with great friends.  I've been blessed throughout my life with so many awesome friends, however I am also at the stage of life where I don't generally see them as often as I would like to.  In high school, you spent all day at school and pretty much all of your free time out of it with friends, and it was the same in university.  But now, life gets in the way - jobs, geography, grad school, spouses, families, commitments, etc.  This a natural part of growing up.  But it was so wonderful to spend some quality time with old friends over the weekend, and reaffirm that it doesn't matter if you've moved, changed jobs, become a parent, lost loved ones, or been diagnosed with a chronic disease; kindred spirits remain kindred spirits, and true friends remain true friends.  Time and distance do take their toll, and these kinds of friendships require effort to sustain - but the rewards are so totally worth it!

I do love quotes, and I came across a friendship one that I think says it all about my weekend:

"The most beautiful discovery true friends make is that they can grow separately without growing apart."

- Elizabeth Foley