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