Shower of Roses

Have you seen the beautiful and inspiring blog "Shower of Roses" blog? I've been doing some Serious Lurking there lately as I prepare for the 2009/2010 school year and borrow ideas for liturgical feasts.

Right now, the creative and highly organized Jessica is having a give-away of the Catholic lap folder, Year of the Priest, so be sure to sign up. Of course, I just probably blew my chances by telling you about it, but, ah, may the lapbook reach its intended recipient, right?

~ V.

Fibromyalgia, Pregnancy & Me

"Not very much is known about the course of fibromyalgia during pregnancy ... In 1997, one of the few studies ever done on fibromyalgia and pregnancy was conducted in Norway. A small number of pregnant women were included in the study, some with fibromyalgia and some without. The study found that an overwhelming number of those pregnant while suffering from fibromyalgia reported a drastic increase in the severity of their symptoms. The third trimester was by far the most challenging during their pregnancy, with symptoms increasing in frequency." (from Pregnancy-Info.net)

When I first started on this pregnancy journey, I found precious little regarding how fibromyalgia would affect my pregnancy. (In contrast, I read a lot about Sjogren's Syndrome and pregnancy.) Because fibromyalgia remains a very hazy, little-understood illness, not much is known about fibromyalgia AND pregnancy.

Because there's little out there to discuss pregnancy and fibromyalgia, I will just share a little of my own experience, so that any other people experiencing the same will not feel alone.

Please note: I am not writing this as a list of complaints. If you don't have fibromyalgia or know anyone who has it, this might be the point where you check out my other posts or you find a far more interesting blog. (I mean, who wants to read medical stuff?) But I am writing this so that people who do have fibromyalgia or whose loved ones do can better understand what's going on.


HOW I'M REALLY FEELING
"There are few studies on fibromyalgia in pregnant women. However, a recent study at Temple University found that women with fibromyalgia had more symptoms of pain during pregnancy than women who did not have fibromyalgia." (from WebMD)

In the first few months of pregnancy, the symptoms were almost interchangeable with those of fibromylagia. The weariness, constipation, flu-like symptoms, etc., were always present---and so I could never tell the difference between the pregnancy symptoms or fibromyalgia.

But now I'm in the last trimester. Everything is different.

And I will confess that these last weeks have been extremely difficult. (There's an old theory that pregnancy will cause a remission in fibromyalgia. And if this is true for some people, God bless 'em. Alas, this theory is not true for me.)

The symptoms mentioned below (sensory overload, exhaustion, etc.) are typical for me in a fibromyalgic flare. And they usually trigger a Sjogren's Syndrome flare (these flares work in tandem in me). I deal with them fairly regularly. However, now in the last trimester, everything is more intensified than usual.

Sensory Overload: Having fibromyaglia is like having super spider senses that tingle, so I'm already hyperaware of all my senses and am easily overloaded. Now, to that, add a little one in my womb who is continually kicking, moving and stretching out my skin. The touch of my shirt against my womb hurts a lot. At home, I go around like Winnie the Pooh, my belly hanging out and my shirt too short. I won't wear pregnancy shirts because the touch of cloth hurts. And I live in pajama bottoms rather than maternity pants, for I can't bear the touch of, well, anything.

Heaviness: The usual weight of the baby during this trimester is hard to carry. But now, as someone who has fibromyalgia, I cannot stand without feeling all my nerve endings just scream. Twinges, movements, little aches, all of these are amplified now in this last trimester. It is extremely hard to endure some nights. Plus, with the baby lying transverse, the kid is kicking my cervix 24/7. I am very thankful for the fetal movements, all wonderfully positive signs, but it is truly exhausting. Not regular tiring like Normal Pregnant People. But it feels like with every kick and movement, I am being drained of energy. It's like having a fibromyalgia flare, but for a much longer time now.

Exhaustion: Because the pain and everything is virtually inescapable (I can't even sleep now, so I can't hide from it), I am completely tuckered out. I have been falling asleep at 3 a.m. these last few weeks and waking up at 7:30. As anyone with an autoimmune disease knows, you need rest. I don't think 4.5 hours are working for me.

Depression: If it weren't for my husband, a very supportive group of friends and prayer, I would be hiding under the sofa right now. The constant suffering of these last few weeks make it hard to stay cheerful and relaxed. The hormones racing through me don't help. However, it is by the grace of God that I have not sunk into a depression regarding my modified bed rest. I've had some dark days in the beginning, but they passed. I do worry and pray for those women who do not have a very strong community or understanding husband...


HOW I'M COPING
This would be a downer of a post if I didn't offer some comfort to other moms along the same path I am traveling. Here is how the journey has become bearable:

Prayer: This is everything. Mother Teresa once said: "Keep the joy of loving God in your heart and share this joy with all you meet especially your family. Be holy--–let us pray." In praying, I am lifting my soul to the Lord and am able to focus on the heavenly, rather than solely the physical. But it is in focusing on the heavenly that I can handle the physical.

Focusing on the Baby: The reason for all these discomforts and pains is because of a life growing within me. Something beautiful and positive is growing hidden now but to be seen soon! I pray for the baby, making the signs of the Cross over the womb and murmuring prayers. Being pregnant is truly a gift.

Keeping My Mind Occupied: If I were to just sit and stare, I'd go mad. By reading, editing, writing, even updating this blog of mine, I keep my mind away from the pain. It helps me to not be so horribly aware of everything ... or at least, it helps ignore it.

Keeping My Hands Occupied: Because I am on bed rest, I cannot do the exercises that might help me cope with fibromyalgia. But I can sew, write letters to loved ones, plan homeschooling activities, etc. If my hands are occupied, I am less likely to bite my nails to the quick from anxiety.

Surrounding Myself With Love: Thanks to technology, I can remain in touch with a good friend who is also on pregnancy bed rest, chat with dear friends in our homeschooling group, etc. And I do not feel isolated. The problem, one of the biggest ones of having an illness, is the tendency to isolate one's self from loved ones. The reason is that one is so physically out of sorts that one does not feel like seeing anybody. The exhaustion and sensory overload goes beyond what a normal person feels. But thank goodness for technology. Our homeschool group's online forum, my Twitter account and private email allow me to still socialize with good friends---but without having to deal with the physical drain of a visit.

Carving Out Quiet Time: Because we homeschool and I work from home, our house is always full of people and noise. In speaking frankly and openly with my husband, I told him about my feeling overwhelmed by my senses and just overloaded. So, he makes sure that I have some quiet time each day. And on the days that it isn't possible, I put on my iPod to something very relaxing and soft, and I close my eyes and take a little quiet holiday for a bit. The children know that I need that time.

Understanding This Isn't Forever: 40 weeks might feel like forever. But it isn't. It's 40 weeks long.

And please know that I am also keeping other bed rest/pregnancy-and-sick moms in my prayers ...

~ V.

Sounds from the schoolroom

I'm totally sick, but trying to get through this massive editing project to make today's deadline.

Meanwhile, what sound do I hear streaming from the schoolroom (i.e. den) into my little corner office? The happy sound of children laughing? The joyous roar of a board game? The buzzy chatter of an educational program?

Nope. I hear this.

It's a classy sort of education we're giving our children apparently.

Who is in charge of my health?

My 2-hour visit at the gestational diabetes center was surreal.

Yes, the diet is strict. Diabetes is not good. Of course, I'll follow the plan to the letter. But it's the interspersed comments that left me a little dazed.

Exhibit A:
Nurse: So, you're on bed rest. So, you're a stay-at-home mom.
Me: Well, I work full-time from home.
Nurse: What do you do?
Me: I'm an editor.
Nurse: How do you spell extrapolate?
Me: Excuse me?
Nurse: I've had an email I've been meaning to send all week. I can't spell extrapolate, though.
Me: (confused that she didn't consult a dictionary) Uhm ... e-x-t-r-a-p-o-l-a-t-e. I think that's it.
Nurse: So, you don't know?
Me: No, I do know. Yes. That's-
Nurse: Oh. I thought, you know, you'd know, considering you're an editor and all.

Exhibit B:
Nurse: You have to follow this diet.
Me: I know, I will.
Nurse: Because you don't want a big baby, do you? Do you?
Me: Uhhh, my babies are always big.
Nurse: Really.
Me: Yes. 9 pounds, 10 oz. 9 pounds, 15 oz.
Nurse: (long pause) Oh. And how did that feel?
Me: Excuse me?
Nurse: Did you like how that felt? Was that pleasant?
Me: It was labor. It felt like labor. It wasn't ...
Nurse: Was pushing easy?
Me: Actually, yes.
Nurse: Well, I had a 10-pound baby. And it was a horrific experience. I was on the table, the baby got stuck. The nurse had to literally jump on me and [insert long horrible story here].
Me: (stunned silence)

Exhibit C:
Nurse: So, you have Sjogren's Syndrome and fibromyalgia, right?
Me: Yes.
Nurse: Wow. That's a form of lupus, isn't it?
Me: Well, it's an autoimmune disease, so-
Nurse: Do your eyes get all dry?
Me: I've got tear-duct plugs.
Nurse: That seems extreme. Why not just use eye drops?
Me: Well, my eyes are like a desert the doctor said and-
Nurse: Just two drops a day. Tear-ducts plugs. Wow. And it's really painful, isn't it?
Me: Excuse me?
Nurse: I heard it just progresses and is really, really painful ...
Me: (stunned silence)

Exhibit D:
Nurse: You're going to need insulin shots.
Me: No, I'm going to control it through diet. And then, if I need to, I'll get insulin shots, but-
Nurse: You'll need shots. You'll have to go to Dr. L- for the insulin shots. And your doctor always freaks out when someone has gestational diabetes.
Me: I've known my ob. for eight years. I've never seen him freak out. He said that-
Nurse: You'll have to get insulin shots-
Me: I'm not getting insulin shots immediately. First, I'll control it through diet.
Nurse: The babies can get sick. Do you understand?
Me: (stunned silence)

My reaction was mostly that. Just stunned silence. I was not used to the uncomfortable little chairs (considering I've been on modified bed rest) nor such pessimism.

Later that week, on my way to my regular obstetrician, I had an epiphany: I am in charge of my health.

If I wanted to, I could avoid all prenatal appointments and just show up one evening in ER and give birth. Of course, I wouldn't. But there's no rule, no law that states that I had to do everything that the women said. They were pushing me to get insulin shots and badgered me about odd little things. And, though I had felt helpless when I was before them, I suddenly felt empowered.

I have the tools to learn what to do to help control gestational diabetes. I'm the one who will follow the diet. I am the one who read about the link between gestational diabetes and autoimmune illnesses. I am the one who loves the child within her and will do anything for the baby.

This experience reminded me of when we first chose to home school our children. Everyone around us had 1,001 rules about how to home school, who to report to, what school district to tell, etc. The red tape was astounding. The paperwork, overwhelming. But once I did some research, I realized that almost all the rules were imposed by bodies that I did not have to obey. They just wanted to make it difficult.

Likewise, I realized that the nurses were pushing for my insulin shots, more doctor's visits, hospital visits, etc. for the money. Or a misguided belief that pregnancy is like an illness, something to be treated.

Once I started thinking about what I could do for the baby---such as follow the diet, be eagle-eyed about sugar snuck into drinks and foods, etc.--- and what I could do for me---such as fax the form to my doctor rather than go to the hospital twice a week to be badgered by the nurses---I felt more confident.

Gestational diabetes isn't something to be taken lightly. But it doesn't mean an automatic route to insulin or a horrible future for myself and the baby. Sure, I might follow the diet and still need insulin. That's all right. Anything for the baby. But a pregnancy deals with life, a little one growing who needs to be nurtured. I don't have a disease that needs to be medicated right off the bat.

I just wish I would have said something earlier to the nurses.

words as sweet as honey

"Life is a flower of which love is the honey."

(Victor Hugo)


The little girl at the doctor's office waited patiently for her mother to fill out the insurance forms for a good thirty minutes, then became restless. With her bouncy little curls in short pigtails and a sweet vintage dress, the tiny girl reminded me of my own daughter at two. The mother spoke sweetly to her and gave her a few goldfish crackers to tide her over. Meanwhile, the father spoke to the daughter in a gentle voice. "All right, sweetheart, Mommy's almost done."

The tone was gentle and warm. It lacked the condescending syrupy tones that most adults use for children, the one used in most t.v. shows. And it lacked the cooler, wearier tone of parents of older children. They both spoke so kindly but firmly that it really made me think about myself lately.

How do I speak to my children? What tone do I use? Does my voice lack that same marveling gentleness that new parents have? Does it have that tired I've-repeated-this-a-thousand-times tone? At what point did I start sounding rougher and less gentle?

Granted, the little girl in the doctor's office can't sass anyone, can't roll her eyes, can't contradict her parents yet. So maybe it's just easier to use dulcet tones for little ones. But as I sat there, listening to the conversation, I wondered if maybe the older children, ones who can get smart-mouthed and irritable, are ones who need to hear calmer, loving voices. Not fake sugar. Not falseness. But true kindness in a tone. Everyone treats you sweetly and kindly when you're two years old. How many people treat 9-year-olds and 7-year-olds with the same patience and gentleness?

Inspired
This morning, as I worked at my home desk, the two boys wandered in. Miguel had some handwriting practice to do; Sebastian wanted to do work, too. I told them it's OK to be in the room when I work---as long as I don't have a meeting and they are quiet.

Sebastian, however, was having a hard time settling down. He was being too loud and yet didn't want to go play in another room. He wanted to be with Miguel and me. "Me work! Me want to do work!" Instead of getting upset, I thought I'd try to make the room seem calmer and more relaxed. Maybe, I thought, if I imitate what I want, then I'll get it.

I put on a calming Mozart CD, told him softly that I had some work to do, gave him a sticky note pad and pencil. Then I turned and kept working quietly at the computer. His older brother did the same. And then Sebastian got the point.

As I edited, Sebastian scribbled a little then quietly asked Miguel to spell his name. Miguel, in soft library tones, explained the letters to him then returned to his work. It was a truly sweet hour.

The couple at the obstetrician's office don't know it, but the sweetness of their doctor's visit not only made their daughter's morning a good one ... but it reminded this complete stranger to carry that gentle attitude toward her own children as well.

Thank you for the reminder.