I laugh on the outside. I pretend that I’m tough. In fact, this post would probably go very well with my Follow-Up to Glee Project. I explained there (if you don’t feel like reading back) that a word that I would use to describe me is “Fragile”. I suppose I pussy-footed around the reasoning behind that.
For as long as I can remember, I’ve lived in fear. This journey to motherhood didn’t come easily for me. Lauren’s pregnancy/birth was a BREEZE compared to Jillian’s. I would take the 3 weeks of almost constant time able contractions with no change to my cervix a hundred times if I could have curbed some of what happened to Jillian.
I’m really open about what happened to Jillian (our story, I suppose.) I guess I HAVE to be when I joke that I can give a detailed history in 15 minutes flat. When I first got pregnant with Jillian, I kept saying “something doesn’t feel RIGHT” I couldn’t explain it. I only had one previous pregnancy to compare it to. I just felt “off”. That feeling didn’t let up. At 12 weeks gestation, Adam and I decided to do the maternal serum screening test. Not that we would have done anything with the results, we just needed to be prepared. When I was pregnant with Lauren, we also had the test done. No big deal. When I went in for the results, Jillian’s levels for Down Syndrome and Spina Bifida were increased. After a lot of thinking, talking and crying, Adam and I decided on an amnio. Amnio was done at 16 weeks gestation. Came back absolutely normal. Phew. My doctor warned that it could be a placental problem and we’d keep an eye on it.
Throughout the course of my pregnancy, I began to have a LOT of pain by my previous c-section scar. Like debilitating pain. My doctor prescribed percocet. After trying to tough it out without meds, researching and talking, I had to start doing SOMETHING. I couldn’t just lay around in agony because I had Lauren to look after too. During that time, my “lovely” doctor called me in to ask if I had a drug problem. HA. FUNNY. You prescribed it. I had already decided to stop taking them at less than 24 weeks because I was feeling better. So, dear doctor, that was awfully nice of you.
Throughout the remainder of my pregnancy, I lived in fear, wondering why I felt so “off”. When my water broke at 29 weeks and 4 days, I tried to brush it off, but to no avail. When Jillian was born at 30 weeks and her first 48 hours were rocky, I was afraid. All throughout Jillian’s NICU stay? Terrified. Bringing her home? Almost worse. I’m not an anxiety type person. But, I constantly lived my life in fear. I guess when we stopped nursing, I started taking something to help me sleep. Anytime I would TRY to sleep without taking anything first, I would lay awake being afraid and if I got to sleep, I’d have nightmares. I didn’t like that either.
Jillian’s been hospitalized many times. More fear crops up. Every time that child gets sick? I get more afraid. My mind takes me places where I don’t care to be. I always fear the worst. I’m going to lose her or this is going to be yet another hospital admission. I seem to be getting better at this fear. Of course, that just makes room for more.
It’s almost been a year since I was diagnosed with rheumatoid arthritis. Before that year, I lost 63 lbs. I know, good accomplishment, but what forced me to do it was fear as well. I was worried I wouldn’t be able to chase after the girls, play outside, fit on playground equipment, etc. So, I lost the weight.
August of 2010 was when I first experienced an RA flare. Let’s just say I’ve had 2 c-sections, my jaw broken and numerous broken bones and THIS pain was the worst I’d ever felt. From then on, I feared that I would have another flare as bad as the first one. That I wouldn’t be able to lift my kids without tears streaming down my face.
After 3 months of plotting, Adam and I realized my flares were coinciding with my period. (sorry for that… TMI, but you should know that already if you already visit here!) For 3-4 days pre-cycle, I would start getting sore knees, making stairs difficult. 1 day pre-cycle, my shoulders and elbows would join the ranks. It’s a total party in my joints. I brought this up with my rheumatologist the last time I went. I had obviously googled and found that joint pain following cycles can sometimes mean PCOS. Which would make sense since every time I have an abdominal ultrasound, they ask if I have it. His response? “Oh! well. That’s bizarre. Menopause will be good for you, too bad it’s 20 years away” Seriously? That’s it? So now, I live every month in fear hoping that this flare won’t be as bad as the first.
I’m just tired of being afraid.