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!