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?