A Long November

[Warning- this is a bit of a morbid entry.  But I needed to get some of this off of my chest, in hope of exorcising the demons and looking towards happier things].

Wow, I am a delinquent blogger!  There are several reasons (excuses?) for this:  I have been busy, I work at the computer all day so when I'm at home I don't feel like spending more time on it!  Also, November is a very depressing month for me, and I just didn't have the energy to write.

I have finished my round of three IVIG treatments, and DM-wise I'm feeling awesome.  Even my hands, eyelids, cheeks, and upper arms (where I was beginning to think the rash was permanent) have healed over.  I have no muscle aches/pains, stiffness, or weakness, and I'm no longer worried that the disease may be adversely affecting the baby.  So I am incredibly thankful!!!  I see the rheum on Friday, and we'll decide then if I do one more prophylactic treatment before baby or not.  I'm a bit torn about this.  On the one hand, it would give me that extra peace of mind that we'll stay healthy until delivery, and hopefully for at least a couple months beyond that (I really want to breastfeed, so I won't restart Imuran right away).  On the other hand, there are small risks of IVIg close to term for baby (hemolytic anemia) so I don't want to take unnecessary risks.  My OB is fine with it either way, as long as the infusions are completed before mid-January.  So we'll see what the rheum thinks about it.

Baby (and Mom!) are growing like crazy.  Baby is fairly mellow most of the time, but has a gymnastics workout at least once a day, which is pretty funny.  Baby likes music and being spoken to - it's crazy now that s/he is getting a bit interactive.  I am almost 33 weeks now! Yikes :).  I'm feeling pretty good pregnancy-wise - I had a lot of low-back pain a couple weeks ago, which fortunately seems to have settled down since I made a few modifications (I've stopped running, changed sleeping positions, and added a lumbar support pillow to my chair at work).  Also, sometimes baby likes to kick up in my ribs, which is not so comfy.  But overall, this is the best I've felt the whole pregnancy so far, so I'm enjoying that!  I'm definitely starting to feel big though, and if I keep growing at this rate I could see not being so comfortable in a few weeks!

Baby and I last weekend

I am so glad that November is over.  I hate November, it is the worst month of the year.  First of all, it is dark and cold and there is no reprieve in sight - winter stretches ahead, seemingly indefinite.  It's too soon for me to feel excited about Christmas.  I was diagnosed with DM in November four years ago.  Also, it is a month of remembering lost loved ones for me.

My good friend Dario passed away November 12, 2009, after a brave battle with lymphoma, at 32 years old.  We worked together at the hospital in Edmonton.  He was a colleague and mentor to me before I was diagnosed with DM, but he really reached out to me after my DM diagnosis and we became close friends.  He was quick to share stories and commiserate - he never made me feel like I was whining about an autoimmune disease when he had cancer.  He guided me through the confusing process of applying for disability when I was unable to work, gave advice about life insurance, long-term disability insurance, and all of those morbid things most people don't think twice about at our age.  He was a shoulder to lean on, and he was the only person I knew who really understood what I was going through, with the crazy drug side effects, trying to regain control of my body, and feeling so ripped off that my life was being interrupted.  He was so brave throughout his first relapse, as he endured grueling chemotherapy and a bone marrow transplant that nearly killed him.  But he bounced back with his trademark sense of humor and courage, and lived life to the fullest even after his second relapse, when his cancer was deemed terminal.  I still can't talk very much about how hard his death hit me, how very much he is missed.  I also can't think about how incredibly unjust it is that, after his long, brave, bloody battle, he still lost.

Dario and I in Mexico, March 2009

Last November 26, my family lost a very special person - my Grandpa Pete.  My grandpa was another example of strength and resilience personified.  He was no stranger to heartbreak and struggle throughout his life, but he was one of the kindest, happiest people I've ever known.  Even at the end, when he was in the hospital getting various unpleasant procedures done, he still made jokes with the nurses to try and make everyone else comfortable.  He loved to tell jokes and stories, and loved his family more than anything.  He was so proud of his two granddaughters, and loved to tell stories about us when we were kids.  I'm so very sad that my baby won't get to meet his or her great-grandpa - he was a special, one-of-a-kind man, and his absence leaves a big void in our close-knit family.  But I hope we can model his unconditional kindness and big heart to this little one - after all, we learned from the best.

Me and Grandpa at the lake, 2009

Also last November, Steve and I went through something that I still find incredibly difficult to talk about.  In fact, I really can't talk about it - so I apologize to those of you that are finding out about it this way.  We had a miscarriage.  Baby was not planned at all (for those of you who are wondering how this can happen to two pharmacists, let's just say that birth control methods are imperfect and leave it at that).  After we got over our initial shock and concerns about how this would impact our life plans, we became very excited and thought that maybe this had happened for a reason.  We kept it quiet, because it was still quite early.  On November 11th I started bleeding.  We went to the hospital, and found out I had miscarried.  The grief is indescribable, and perhaps even irrational for someone we had never met.  But in some ways, I think a miscarriage is the worst kind of grief - not only have you suffered a loss, but you don't have any of the memories of good times spent with your loved one.  You are just left with a mess of shattered hopes and dreams.  This was a very black time for me.  I couldn't make sense of why this had happened, it seemed like such a horrible tease.  We had resigned ourselves to not being able to have our own kids, then we were given this gift and allowed to get all excited about it, and then it was just snatched away.  I went through a period of hating my body like nothing I'd experienced so far.  I was sure my baby died because I was defective.  I felt guilty that Steve was stuck with me and my defectiveness.

Slowly, with time and a lot of TLC from my hubby and family, I healed somewhat.  But I certainly haven't forgotten, it is a scar that will always be there.  The good that ultimately came out of this was that we realized we do want to try to have our own kids, and were even brave/crazy enough to try again.  I still marvel at this sometimes - when I think of how broken I was last November, I would never have thought I'd have the courage to try again.  But maybe I had a few angels looking down on me and helping me out there. ♥           

24 Weeks!

So today is a bit of a landmark day.  I am officially 24 weeks pregnant, which is the age of viability (i.e. baby actually has a chance of surviving outside the womb if I delivered today).  So now I share the responsibility of keeping baby alive with medical science, which is a bit of a relief!  (Not, obviously, that I want to go into labor anytime soon!)

The whole pregnancy thing is starting to feel more real - and surreal at the same time, if that makes any sense.  Most of my pants no longer fit, and according to my husband, I now look pregnant and not like I've just eaten a big lunch!  (The pic above is from a couple weeks ago, but you get the idea).  Baby is moving and kicking more consistently now, and I now feel him/her occasionally when I am up and about.  But I can count on our nighttime bonding sessions now; as soon as I lie down in bed, s/he starts kicking in earnest, like "Hey, Mom!  What are you doing?  Get up and rock me around some more!"  This is endearing for now, perhaps it won't be so much 5 months from now when I am trying to get her to go to sleep!  At the moment, though, I enjoy this special time with this person who is already so important in our lives.  I can't wait to meet him/her!

A note on pronouns:  I have no idea if we are having a boy or a girl.  I really have no preference, and I think it will be a really special surprise when we meet our little one.   BUT for whatever reason, I just have a gut feeling that it's a girl - so sometimes I slip and say "she."  We'll find out in T-16 weeks!

Not much DM talk today.  Now that the first round of infusions are over, I am hoping to be feeling back to normal soon - so in the meantime I am focusing on happier things! :)  OB was very reassuring at my last appointment, she said the kind of low-grade symptoms I've been having are much harder on me than the baby, and that everything is measuring and looking normal.  So that helped put my mind at ease a bit, and I'm now just trying to relax and enjoy the pregnancy.

IVIG Day 2

Went in for IVIg yesterday and today.  I got the usual, full doses, no surprises, so that was good.  They went as well as they can go - no weird reactions or anything like that.  Unfortunately, they just make me feel so crummy!  Especially now that I can no longer take naproxen for headaches (because of the pregnancy), so my head feels like it's been overstuffed with steel wool - foggy and scratchy and tremendous pressure, especially behind my eyes.  Also, they've doubled both my Benadryl dose as well as my IV steroids beforehand - which gives me the amazingly uncomfortable sensation of not being able to keep my eyes open but also not being able to lie still.  So it's a very disturbed sleep, even though I do sleep most of the time I am there.  Now I am exhausted and feel like crap, but not able to find a comfortable position to rest.  This has left me incredibly restless and cranky.  (This might not be my most eloquent entry either, as I'm pretty sure I'm still not thinking clearly).  I'm hoping blogging about it will get it off my chest.

I know in the grand scheme of things that these infusions are not that big a deal.  I'm so fortunate that they help me as much as they do, and that they are safe for kiddo (unlike most other options for autoimmune diseases).  I'm also very fortunate that, unlike the grueling chemotherapy regimens I've seen people go through, they don't make me violently ill for days during and after.  I'm sure lots of people would trade me this ickiness I feel for what they go through in a heartbeat!  The staff at the treatment centre couldn't be nicer to me.  So really, it's not like I'm being tortured for the time that I am there!

But I hate having to go into the hospital and be treated like a sick person for two days.  I hate, hate, HATE having to miss two days of my workweek (and my regular life) to be there.  I worked so hard at the beginning of the week to try to compensate, but you just can't make up for missing two days in three days of work.  I had to rush through a couple of projects and I know I didn't do as good or thorough of a job as I normally would, but I had deadlines to meet.  Now my head is pounding, my eyes are watering, and my body aches, but I am trying to get a major presentation on my thesis results ready for Wednesday.  Needless to say, it is not going well.  But we're going away this weekend and I really don't have any other time to do it, short of leaving it until Tuesday and stressing about it all weekend.  And I know I've already complained about this, but I missed my opportunity to present at my final MSc seminar today, which is frustrating both for now and later.  Why, why, WHY does this keep on happening, over and over again, no matter what I eat, how well I try to take care of my body, how much I pray or meditate or barter?  I JUST WANT TO BE NORMAL!!!!

Ok, please forgive me for my selfish rant.  I know the whole "it's not fair" thing is pretty much the most maladjusted way of thinking a person can have.  Life isn't fair, everyone knows that.  And lots of people have it a lot worse than me.  I am just tired and frustrated and fed up... and did I mention tired?  Hopefully a good nights' sleep will leave me feeling much brighter and more like my normal self in the morning.

Now back to this damn presentation...

Depressed

Update since my last appointment:  I have my next IVIg infusions booked for Oct 6 and 7.  That's how long it took from my Sept 13 appointment - even though I am HAVING FLARE and PREGNANT.  Seriously?  Does this not seem a little ridiculous?  I see her again mid-October and I guess we are going to have to have another chat.  Maybe I just need to see someone else.  But again, I haven't heard glowing recommendations about any of the rheums in my city, and am afraid to start over at this stage of the game.  Rock, hard place, me.  UGH.

Another lovely thing about the infusion dates - my master's seminar was scheduled for noon on Oct 7th.  It is a requirement that we give 2 seminars to get our degree, and this was to be my last.  I scheduled it forever ago because they get booked up quickly.  No one was able to switch with me this late in the game, so the next available date was the beginning of January.  When I will be 8.5 months pregnant and hardly able to breathe.  Fantastic.  I know this is a minor annoyance in the grand scheme of things, but I am just so tired of DM fucking up my life.  (Excuse me, it's been a bad day).  I'm starting to think that I will NEVER finish my MSc.  I also think I was stupid to undertake it in the first place, with my health and everything so uncertain.  I was trying not to let the disease run my life, but now I think that was very careless and naive.  I had a decent, secure job with benefits (including sick leave and disability).  So what if it wasn't what I wanted to do forever, or if it wasn't in the city I wanted to live in forever?  At least I had a reliable, sensible rheumatologist there!  I am a moron.

In more major heartaches, my hubby's lovely grandma passed away last Wednesday, Sept 21.  She was a special lady, and my heart breaks for hubby and his whole family (especially his grandpa - they were married for 65 years).  It was a bit of a shock, because despite her age and the fact that she was battling cancer, she had done so well and none of us expected that she would go into the hospital and deteriorate so quickly.  It all felt very fresh too, as my grandpa passed away not even a year ago, and it is so devastating to watch them just slip away.  Both of hubby's grandparents are such wonderful people, and they welcomed me into the family with open arms.  I never felt like I was just Steve's girlfriend or Steve's wife around them, they treated me like one of their own.  Grandma was so loving and thoughtful, and she was so excited when we told her we were expecting.  I am so incredibly sad that she will not get to meet and hold our baby (that's her above, with our nephew).  At the same time though, I am blessed to have known her, and thankful for all the light and love she brought to everyone's life that I also got to experience.  

Coming out of the closet

I have a secret that I am finally ready to share (it took awhile for me to really feel ready - hence my blogging hiatus!)  Here goes...

Hubby and I are expecting a baby!  Somewhere on or around Feb 1, 2012 (to save you mental math, I am just past 20 weeks pregnant - halfway there!).  We are very excited, however I am nervous, too.

I've already talked a little bit on here about issues with DM and pregnancy.  I have spoken with my rheum about it, and she felt that this is the most stable my health has been for awhile (thanks to the IVIg).  Since IVIg is considered quite safe in pregnancy, it would be a reasonable time for us to consider it (and because this disease is unpredictable, this window of time might not last forever).  She also referred me to an OB to get her opinion, and the OB was actually quite encouraging.  So hubby and I decided to take a "let's see what happens" approach, and sure enough, had a positive pregnancy test a month later!

We were a bit shocked by the speed, but excited nonetheless!  For the first 12 weeks, I felt like crap.  But in a gloriously NORMAL way - nausea, fatigue, all of the usual pregnancy stuff.  I don't want to romanticize this too much, it wasn't fun to dry heave all the time, detest food, or fall asleep at my desk.  On the other hand though, this crumminess was because a physiological process was happening in my body, and a new little person was developing.  Much different than feeling like crap because your body is destroying itself for no good reason at all.  Pregnancy sickness is relatable - most women who have been pregnant have had some experience with first-trimester ickiness, so when I felt my worst I could call someone up and they understood exactly what I was going through (again, much different than DM).  Also, there is an end - worst-case scenario, it lasts 9 months, but usually only 2 or 3 for the nausea stuff.  Unlike DM, which NEVER ENDS.

I relished the normality of it.  For the most part, I pretended DM didn't exist at all in those early weeks.  I read zillions of pregnancy books, surfed the internet like a teenager, dreamed about this little person now sharing my body, and pretended to be a normal 28-year-old pregnant for the first time.

Of course, I couldn't ignore the realities of DM forever.  My rash got worse throughout July (probably due to sun exposure), and I was frustrated to wait so long to see my rheum.  When I did see her at the end of July, she said she would arrange IVIg treatment for me to treat the rash, and we would follow-up closely during my pregnancy and consider starting regular, monthly IVIg until the baby arrived (as we'd discussed before I became pregnant).  A week and a half went by, and I heard nothing, so I phoned her office - and her receptionist was away until the end of August (messages were not being checked at all)!  So I had no way of getting ahold of anyone, and no treatment had been booked.  Even though I was out of my first trimester by now, I remained really fatigued.  I also started experiencing more muscle stiffness, and the insidious muscle weakness that is so subtle at first you hardly notice it (which of course makes you wonder if it's in your head - maybe I'm just tired because I'm pregnant?  And maybe I'm not as strong because I'm not exercising as intensely?  Etc).  Also, my weight continued to stay the same - pregnancy is the one time when this is not generally a good thing, especially when you are borderline underweight to begin with.

I started to panic.  DM pregnancy outcomes seem quite strongly correlated with disease status - if the disease is in remission, babies tend to do quite well; if the disease is active, babies can experience growth retardation, premature delivery, stillbirth.  All I could do was wait and stew.  This was a black few weeks for me - I wondered if this had all been a mistake, if it was selfish of me to get pregnant with this disease, how I would ever forgive myself if something went wrong.

The Monday morning my rheum's office reopened, I left a strongly-worded voicemail about my frustrations and my need for IVIg ASAP.  My treatment was booked for Sept 1 (that is how long it took from my July 26 appointment)!  I also had another rheum appt booked for Sept 13.

When I went for my infusion, I found out I was only booked for one day, and only half the dose on that one day that I usually receive (so 1/4 of a usual treatment dose for me).  No warning ahead of time.  AHHHH!!!  Frustrations continue.

I was horribly nervous for my midway ultrasound (the one at 18-20 weeks where they check for structural abnormalities and assess growth and development).  I was terrified that something was going to be wrong, I'm pretty sure I didn't sleep for at least 3 nights before and couldn't eat that morning.  However, at every turn the baby measured perfectly normally!  His/her growth was right on schedule, her organs looked structurally normal, her spine was closed.  I have never experienced such simultaneous joy and relief!  I couldn't stop smiling, and kept saying to Steve, "He said everything looks ok!  Can you believe it??"  (This is where I know DM has forever changed me.  Most moms-to-be that I've spoken with look forward to their ultrasounds as a chance to see their baby, and assume everything will be fine - because usually it is).  In many ways, I know the worry will never stop - but it was great to hear that so far, everything looks A-ok.

When I saw my rheum on Sept 13, I had a keen young resident do my initial interview and assessment - he did a much more thorough physical exam than some do.  It was worse than I expected.  I was shocked and dismayed that I could not keep my arms up with resistance, and my hip flexors were really weak too.  When we met with the rheum, I expressed my concerns about the lag between treatments and the shorter treatments/lower doses that I received.  It turned out the lower IVIg doses had been suggested by the transfusion medicine department (still from a possible infusion reaction I had months ago.  I am still not convinced that there was a reaction at all - but the nurses were and it was made out to be a big deal at the time).  She apologized for the crappy follow-up and the fact that the baby-dose infusions didn't seem to have cut it, and agreed to do another round of full-dose IVIg right away.  I am still waiting to hear when that will be...

So now you are up to speed on my life the last month and a half!  I wanted to wait to say anything until I knew everything was progressing well with the pregnancy - also I had a few friends/family that I know follow this blog and I wanted to tell them personally first.  Hopefully now that I am out in the open I can blog more so my entries don't all turn into novels like this one!

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

Hello!

I just wanted to give a shout-out to my peeps from the "Daily Strength" and "Someone Like Me" websites!  Thanks for your support, guys.  By the way, both are great resources for people coping with chronic illnesses - Daily Strength has groups for many different kinds of illnesses, and Someone Like Me focuses specifically on DM/PM and other autoimmune diseases.  I've learned so much from the people on theses sites, and it is great to connect with people going through something similar - especially since DM is so rare.

All right, so this is a quick one, as I am off to Vancouver tomorrow to spend the weekend with friends.  I'll have more stories when I come back!  Have a great long weekend, everyone!

Change

Today I want to take a step back again to look at the forest of my life - which is full of blessings (see my "Gratitude" post for a brief list).  But today I want to focus specifically on all of the positive changes DM has brought to my life.  At first glance, this statement might seem a bit bizarre; and while I would never have CHOSEN dermatomyositis as the vehicle to teach me these lessons, the end result is the same - I have learned and grown a lot from my struggle with DM.

I came across a couple of quotes the other day that I love, and that I think are relevant here:

"Freedom is what you do with what's been done to you." - Jean-Paul Satre

"It is not the strongest of a species that survives, nor the most intelligent, but the one most responsive to change." - Charles Darwin (I think this applies to individuals within a species too).

Before DM, I was very much a driven, Type A, go-getter person.  I worked and played hard.  I loved competitive sports, was very goal-orientated and always pushing myself to be better.  I was definitely my own biggest critic.  I placed a lot of trust in Western medicine, and my scientific background made me dismissive of other healthcare practices and systems I didn't understand.  I also believed that (generally speaking), if you treated your body well, it would repay you with health and longevity.  Obviously I was aware there were exceptions to this; I just never expected to BE one!

One thing DM (and other chronic, relapsing-remitting diseases I'm sure) teaches you is PATIENCE.  You learn to listen to your body and accept your limits in a way you didn't think you'd have to worry about until you were 80 years old.  If you don't, if you try to power through despite the warning signs, you will pay for it many times over later.  Rome wasn't built in a day, and all that.  The thing that really sucks about these diseases is that you no sooner finish (slowly, steadily) building Rome, when the giant comes and smashes everything down around you and you have to start all over again.  Once again - patience.  Take a deep breath, regroup, and start again.  Patience was never my strong point before, and it is an ongoing struggle for me; however, I am much better than I used to be!

Another thing that DM has changed about me, perhaps for the better, is that I am no longer so goal- and future- orientated.  You can only control the effort you put into something; often the outcome is out of your hands.  I've learned to focus on the process of whatever I'm doing - whether it's my master's degree, learning yoga, or training for a half-marathon, rather than the end result.  I'm learning to focus on the journey, rather than the destination.  DM is unpredictable; you never know when another relapse might strike, how bad it will be, how much of your life it will impact, how long it will last.  If you dwell on this, it can make you crazy.  In my experience, the key is to focus on the here and now.  What can I do to make RIGHT NOW the best it can be?  This is easier said than done - but again, with practice I am getting better!

 I will not bash Western medicine, it saved my life and saves many others every day.  However, being "sick" has opened my eyes to some of the benefits of alternative healing modalities.  I don't believe the two need to be mutually exclusive; both have their place.  It is an unfortunate truth that our current healthcare system in the West is very focused on treating the symptoms of disease - it is less concerned with promoting wellness and addressing the underlying causes of disease.  Partly this is an issue of limited money and resources.  But I digress.  In the end, though, through consultation with a naturopath and Traditional Chinese Medicine doctor, I have made many healthy changes to my life that complement (not replace) my more traditional medical care (immunosuppressants, etc).  I thought I ate healthy before - but I really eat well now!  (I'm sure I'll be  discussing my diet in much more detail in entries to come).  I'm also a lot more aware of the power of the mind in shaping our reality - thoughts aren't harmless entities just because they are not expressed out loud.  I'm much kinder to myself than I used to be.  Also, I have no idea why or how acupuncture works (something about Chi?  I'm already lost :) but I know I feel better when I go regularly!

Now yoga.  Yoga is something I never would have been interested in in my other life - it is too slow and introspective.  The old me would never have attended a "fitness" class where you spend the last quarter of it lying on your back in the dark!  However, I am so thankful that I have discovered yoga, not only for its physical benefits, but also for its philosophies and teachings.  It's a path that I've only begun to explore, but am excited to continue on it - I believe it's a very powerful healing modality.

I also think that my experiences with DM have made me a better, more empathetic healthcare professional, and person.  I understand some of the hardships that people with chronic illnesses face on a daily basis in a way that I couldn't have before.

Finally, my struggle with DM has shown me that I am a fighter.  I am not going to lie down and give up when the going gets tough; I am going to push forward.  Not that I don't have times of emotional weakness or self-pity; in fact, another thing I have learned is that you can't push away negative emotions all the time.  It's important to acknowledge negative feelings - the only way out is through.  Accept that you will feel down sometimes, that you will experience disappointments; that's life, and especially life with a disease like DM.  Acknowledge your feelings (journals/blogs are great vehicles for this!), then do something that brings you joy.

Trying to see the forest - even when there is one big, fat, UGLY tree in the way!

All right, so I know the theme of my last post was gratitude, and it's something I have been trying to hold onto tightly throughout some trying days over the last few weeks.  Nothing major or life-changing, but just minor annoyances that don't feel so minor when you are going through them.

First of all - the rash is back.  Now the rash in and of itself isn't a huge deal; it's itchy as hell, and I find it embarrassing, but rationally, I know it's nothing that makes people stop and stare.  It just looks like I am chronically sunburned on my face, upper arms, hands, and chest.  And once it starts, it tends to spread.  But the real problem with the rash is what it represents - a dermatomyositis recurrence.

I never know if I have days, weeks, or months before the real problems start; the muscle weakness and pain, and/or the fever and fatigue that hit me in the face so hard I can't get out of bed for love or money.  Literally.  Every twinge, every morning I wake up tired, I wonder if it's starting again.

So what does it mean?  It means returning to IVIg infusions, and/or steroids until the symptoms resolve, on top of my other immunosupressants, Imuran and Plaquenil at their respective maximum doses.  Unfortunately, my rheumatologist would prefer to keep the IVIg in "reserve" for emergencies or severe relapses.  Which, so far, this is not.

So prednisone.  Now, I am a pharmacist, and I knew all about the side effects of prednisone, just like I know all about the side effects of blood pressure pills, antidepressants, etc.  However, in my experience as a patient - the difference between prednisone and other drugs is that most of the side effects you are warned about aren't a "might happen" but a "will happen" scenario - it's just a matter of when.  For most drugs, common side effects happen in less than 10% of people.  So really, most people don't ever experience side effects from most drugs, or if they do, they are often transient.  Or there is another alternative to switch to.  None of this is the case with prednisone.  I do not know anyone on chronic, high-dose (1mg/kg/d or more) prednisone who has not experienced weight gain, increased appetite and cravings, heartburn, mood swings, trouble sleeping, increased blood pressure/blood sugars, and reductions in bone density.  Obviously there are varying degrees of all of these, and a lot of other fun side effects that are common too, but I have yet to talk to a rheumatic disease or cancer patient who does not develop at least these while on prednisone.  

I am one of those patients who REALLY does not do well on prednisone.  Specifically mood issues - anxiety, depression, sleeplessness.  I am a bit of a perfectionist to begin with, but the prednisone brings out my latent OCD in full force.  Example:  I was lying in bed, still awake of course, at around 3am one night, and all I could think about was the fact that all of my mugs were not facing the same way in my cabinet. Finally, I had to get out of bed and fix this.  While I was at it, I cleaned and organized all of my cupboards, and was still at it at 9 the next morning when my husband left for work.

In short, me and prednisone do not get along.  Needless to say, my husband is also not a fan of me taking prednisone.  So IVIG is always preferable to me.

Not that IVIG doesn't have its own drawbacks.  For two working days a month, I have to lie in a hospital bed for 6-8 hours like a sick person, doped up on Benadryl and painkillers to stave off infusion reactions.  Generally, my IV site hurts because the solution is very viscous (also, if I have been on prednisone my veins are shot and it takes a few tries to get a good site.  Each leaves massive bruises).  So for two days a month, I am entirely out of commission, which is not convenient at best.  I do this for three months - but usually after 1-2 months, I am almost completely better.  It's miraculous.  So those awful 2 days per month don't seem like such a huge price, when it means I get to keep my health and my sanity.

Now unfortunately, this isn't always the easiest thing to coordinate.  First of all, I have to convince my rheum that I need treatment, which isn't always easy, because as I said she likes to keep it in reserve.  Fortunately, she agreed to it this time with only minor cajoling on my part.  Also, my rheum has to be on-call both days I am getting the infusions, and they have to be two days back-to-back.  Unfortunately, my rheum is away the rest of this week and all of the next - and I am away the week after that.  So I can't get in for treatments until June 7th!  Which means - prednisone and praying that holds the rest of the disease at bay.  And that I don't lose my mind completely in the meantime.  Wish me luck!

Theme of the Day - Gratitude

I am thankful for so many things in my life.  Sometimes, though, I lose sight of all of the wonderful gifts I've been given in the treadmill of everyday life.  Which is funny, because I never fail to notice things that I would like to change!  So today I'm going to break that pattern and acknowledge the great things in my life.

Things that I am so incredibly thankful for (in no particular order):
- The fact that I have never experienced true hunger.  I have no idea what it feels like to go to bed hungry, or to not know when my next meal will be, or to wonder how I am going to feed my family.  Too many people all over the world know these feelings far too well.
- The fact that, in Canada recently, we have had too many elections.  Annoying, expensive, yes - but the right to vote is something I take so for granted.  But this right is something that so many people have fought and died for and continue to fight and die for.  We truly are privileged to live in a democratic society, which recognizes the right of all people (women, men, blacks, whites, Christians, Muslims, etc) to have an equal say.
- My awesome hubby.  I could go on forever, but in short, I am so blessed to be married to my best friend - the person who makes me laugh, who I can't wait to see at the end of the day, and who I want to share everything with.  Also, he has a nice butt :)
- My great family.  My loving, supportive, selfless parents, my beautiful, smart, funny sister, her quirky, funny boyfriend; my wonderful Grandma; my intelligent, thoughtful Uncle; my awesome Grandpa; my aunt and uncle and their daughters, and my other aunt and uncle and their sons; my wonderful parents-in-law, my two fabulous sisters-in-law, and my brother-in-law, his girlfriend, and their baby (our adorable little nephew!)
- Universal healthcare in Canada.  I know this is a touchy subject, and I am certainly not blind to the problems with Medicare; however, I am so thankful that no one in this country is denied access to medical care because they cannot pay for it.  In my own personal experience, I would be bankrupt about eight times over if I had to pay for all of the medical care I've received; and since I got sick so soon after starting to work, it's entirely possible I wouldn't have had insurance either.  
- Spring.  I am so incredibly happy it is finally spring!  Never mind Christmas - spring is the most wonderful time of the year.
- Ice cream, chocolate, and red wine.
- My crazy kitties.  They make me laugh out loud at least twice a day, and nothing is more calming than holding them and listen to their contented purrs.
- Lakes, oceans, mountains, rivers
- People who are nice to strangers for no reason at all.

Ok, I could go on, but that's pretty good for one evening.  Goodnight!

The start of my relationship with dermatomyositis

Since it isn't a condition most people are very familiar with, I've attached a good link below.  It is a very rare autoimmune disorder that causes muscle weakness, stiffness, and pain, as well as a characteristic itchy skin rash.

I first developed the rash on my face in November of 2006, then it spread to my upper arms, chest and back.  I was referred to a dermatologist, who diagnosed eczema and gave me a steroid cream, which didn't help.  But it wasn't until September of 2007, when the muscle symptoms started, that things really went downhill.  I had fevers, muscle stiffness, and was sleeping all the time.  But it wasn't until a recreational volleyball game in mid-October that I realized something was really wrong.  I was unable to straighten my arms to bump, couldn't hit the ball more than three feet when trying to serve, and couldn't lift my arms over my head to set the ball (once, it actually hit me in the face - so embarrassing).  Not that I was ever a pro volleyball player or anything, but I used to be decent at it!  That game, the mortification and fear, is still burned in my brain - I haven't played volleyball since.

My family doc did some tests and identified some abnormalities, but didn't really know what to do about it, so he referred me to an internal medicine specialist.  However, I wasn't able to get in until late December.  In the meantime, things got progressively worse.  I couldn't lift my arms above my head to do my hair or get a cup down from our kitchen cupboard.  I couldn't get dressed without help, or go up a flight of stairs without taking a break.  I would work my 8-hour day, get home at around 4:30pm, and sleep straight through until 7 the next morning.  Food held no interest for me, and I lost about 15 pounds from my already-slight frame.  Finally, I started having trouble swallowing - food and liquids would just get stuck in my throat.  At this point, I got really scared and realized I needed help quickly.

So, I went to the ER in the city where I was living at the time.  I saw internal med docs, neurologists, rheumatologists, speech-language pathologists, a surgeon, and a dermatologist.  Within a day, I had a (probable) diagnosis and an appointment for a muscle biopsy to confirm it.  A few days later, I had the muscle biopsy, and received the confirmed diagnosis that same evening - "moderate to severe dermatomyositis" - the evening before my 25th birthday.  I started high-dose steroids the next day.

Truthfully, the primary emotion I felt at this time was relief.  I finally had a diagnosis, I was going to get treated, and I would get better!  I knew DM was often a chronic disease, but I figured because I was young and otherwise healthy, I would be among the lucky 20% of people who have an initial flare, receive treatment, and then stay healthy.

I required almost two full months off work to recover my strength, and then several more working reduced hours.  It was so humiliating, being 25, in my first real job, and having to take disability!  I did physical therapy and (tried to) rest - although steroids made that difficult.  I started methotrexate and plaquenil several weeks later as well.  However, I approached it all with a fairly positive attitude, and figured that I'd recover from this disease and be back on track.

Unfortunately, that hasn't really been the case.  In many ways, I am glad I didn't know what a long, hard road I was in for - it made it easier to focus on my initial recovery with determination and optimism.  I had no way of knowing at the time how profoundly I was going to change.  But more on that later...

http://www.mayoclinic.com/health/dermatomyositis/DS00335