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.
Your rheumie’s an idiot. A lot of women have an increase in symptoms during PMS (I’m one of them – thought I’d join the TMI club). If you have breakthrough flares that severe, your meds are obviously not doing the trick. Haven’t been on your blog for long enough that I know what meds you’re taking, but obviously, they’re not enough. Ever thought of a second opinion?
As for the fear about Jillian… I have no words that are adequate. Just that I’m sorry.
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Thank you SO much for your comment!! Honestly, I’m not taking ANYTHING. Not because I don’t want to (I’m sure it would make my life a little bit more bearable), my rheumatologist is a jerk. I ask him about pain management and he said “I don’t think you need it”. I would like to get a second opinion, but if they find out I already HAD a rheumatologist, they could deny me. Since health care is an issue everywhere, there are wait lists and since I’m already being seen, I don’t fall into the “wait-list” material. Very frustrating.
Her Rheumy is an ASS and she needs another opinion. She is on NO meds other than muscle relaxers which do nothing.
Cheryl! Go to the hospital and get a new referral.
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get yourself a new Dr. asap!!! And I know what you mean about the fear of losing your child. After Hannah was born, and she stopped breathing and her NICU stay and all of that…I found myself journaling and taking a sick amount of photos. I realized I had to take the photos so I’d have something to remember her by. It was like I couldn’t let myself believe she was going to be ok. Now, she’s 4 and a healthy active kid (OMG ACTIVE) but still, when she gets sick I start to have those thoughts creep in…that I’m going to lose her. I don’t feel that way about Nathan. Weird eh? Gee…sorry I had my own therapy session here in your comment section!!
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Cheryl, this post is true and raw emotion. While it may break you down, I think you have more strength and courage than many of us will ever.
Your fears do not make you weak as they are all logical. Don’t ever be ashamed of your experiences.
Fear is the father of courage and the mother of safety. ~Henry H. Tweedy
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I am so sorry Cheryl. You have dealt with so much in such a short span of time. I have dealt with really hard difficult things as well, but on a different scale and never where my child’s health was in danger. I don’t know that I could handle that and you have every right to be afraid. The important point is that you keep pushing through and always come out stronger than before!
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I’m so glad you wrote that blog Cheryl! I think it describes many of us parents of kids with disabilities. I think there’s an element of post-traumatic stress disorder when we face one frightening thing after another after another that is so far removed from what parents of typical kids experience. Add to that your own pain and health problems and who wouldn’t be hypervigilant and anxious and on constant alert!
Just before I read your post, I read this post by a mom of one child with CP and one with Asperger’s: http://threechocolatebrownies.blogspot.com/2011/07/separation-anxiety.html
I don’t know many parents who haven’t experienced depression and anxiety when their child has special needs. I certainly have.
I hope you’re able to find a better doctor who LISTENS to you and is proactive in strategies to manage your monthly pain. xo
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Thank you so much, Louise!! I think it’s weird, but I JUST had a conversation with my uncle on PTSD. My uncle is in the army and has gone to combat in Darfur and Africa (among other places) I had shared with him that I read that A TON of NICU parents have PTSD. And he said it didn’t surprise him. still there is one bottle of hand sanitizer I can’t stand (the whole NICU smelled of it and it makes me nauseous now) and whenever I hear a code blue (even though Jillian has never had one called) I get panicky and sweaty. Almost a fight or flight reaction. It’s definitely interesting to think how the brain works.
I really hope to find a DECENT doctor soon. I hate living wondering if I’ll be able to lift my kids in the morning.
Cheryl and Louise, why do you think it takes so long for parents of kids with special needs to find support?
Why don’t medical professionals recognize this need?
Oh god how I get this. First baby was full term, but at 6mos he ended up in a oxygen tent with pneumonia. He got croup every year until he was 7. I had my 2nd baby when my oldest was 5. Water spontaneously broke at 35 weeks exactly. He had breathing problems at birth. I flashed back to the oxygen tent. He’s had respiratory issues ever since. It’s so bad I have my own pulseox meter at home because he can change so rapidly and never act like he’s not feeling well. Then you add your own chronic conditions and crappy doctors on top of it. Yep, I totally feel this post.
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I can not image what you go through on a daily basis. You are my hero. <3
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O gosh honey Im so sorry. I know what you mean about being tired of being afraid. Kind of why Im letting the old blog go and doing a new one. I realized that my blog was helping to fuel my fears. The constant talking about my health issues and then researching content to put up was making my life more negative. I too get terrible pain in my body right before my period. For me its my heart and legs. I get terrible pain in my knees and burning sensations all over my lower legs. My heart goes into terrible rhythms within a few hours before it begins. Im so used to it and how bad it gets that now after two years its like an alarm clock that my period will start soon. Ive never received an explanation to this. I always get told that its just the way it is. Shame on that doctor for prescribing you those meds and then asking you if you have a problem. I think SOME doctors need to find a new profession.