Sunday, December 11, 2011

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.