A Zebra Mommy

It’s been quite some time since I last posted, and our baby boy is here! After nearly 54 hours of labor, he made his appearance on 12/12/12 at 10:54pm weighing 6lbs 8oz and measuring 20 inches long. He is six weeks old now and simply growing like a weed! Life is bliss with him in it and I am constantly amazed by him. I have all of the sleep deprivation and aches and pains of a new mommy, but living the life of a zebra mommy is definitely difficult, and, I imagine, different from most. 

If you have read my previous blog posts, you are aware of the problems that I have with EDS. For those of you who may not have read my previous posts, I will recap quickly. I have Ehlers-Danlos Syndrome type III, which is known as the hyper-mobile type. This means that I have hyper-mobile joints, which will dislocate and sublux (slip out of place) on their own. EDS is accompanied by chronic pain in the bones, joints, ligaments, muscles… you name it. Basically… it hurts.

During my pregnancy, I had serious problems with my hips and needed to use a belt to hold my hips in place, because they got to a point of slipping out every time I took a step. My wonderful, angelic OB recognized my need for help and quickly got me into physical therapy, which made a tremendous difference. My physical therapist is a saint, and approached me – having never heard of EDS – with several gentle exercises and an arsenal of prenatal yoga. I can honestly say that I would not have made it through my pregnancy walker-free, if it hadn’t been for these exercises. The pain was unbearable and there were several times that I found myself “stuck”… sometimes standing, sometimes sitting, and sometimes, I was crouched on the floor. All of this happened even with my physical therapy, so I can’t imagine what it would have been like without it. 

Now, since having C, I can honestly say that I have seriously “earned my stripes”. My shoulders have been in an uproar, my hips are trying to find their place but seem to be lost, and my every joint hurts, right down to the knuckles in my toes. This is when I have to remind myself that I’m simply not like most moms. My 6 week post partum appointment was a glaring reminder. 

After discussing my recovery so far and all of the positive things that have occurred over these past 6 weeks, I wanted to talk to the doc about my pain. Thankfully, she has always been open to talking about it and has never told me that she didn’t believe me. She asked me what I did for pain before pregnancy. I said that I employed the “grin and bear it method”, explaining that the last doctor I discussed it with simply brushed me off and told me that I needed antidepressants. Now, I do know that they CAN be helpful with chronic pain conditions, such as fibromyalgia and others, but I’ve been on antidepressants; they don’t help. Doc came right out and asked me if I am depressed. No. She stated that I have never seemed even kind of depressed to her, despite all of my pain and frustrations throughout pregnancy. She did admit that antidepressants can be helpful with chronic pain conditions as well, but acknowledged that this is so much more! I can’t tell you the relief I felt in hearing validation for my complaint! This is something I had received only once before and several years ago. We discussed my need for pain management, and she gave me solutions. We talked about the need to strengthen, yet protect my joints (especially my shoulders), and she got me referred back for more physical therapy. She also sent me away with great advice (and warnings) on how to avoid more damage. At this point, the main concern is my shoulders. I have been told to avoid carrying C around in his carseat, and have been advised to “wear” him as much as possible. The result of ignoring this advice and not moving forward with physical therapy could mean needing new shoulders as early as my 30’s. That’s just over five years away! It’s highly likely that I will need new shoulders later on in life anyway, but there’s simply no reason to run into this problem as early as my 30’s, if it can be avoided. So… that’s the goal for now. 

There is so much more to talk about, but these Zebra wrists and fingers are worn for now. Expect to hear from me again soon, but for now… I give you all my Zebra hugs and love! Talk to you soon! 🙂

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The Striped Risk

Well, ladies and gentleman… As of today, I am 24 weeks and 2 days along! We were so happy to find out that we are having a little boy and we just cannot WAIT to hold him and welcome him to our family. Life has been wonderful and this pregnancy has actually gone a lot better than expected and our doctors agree!

I have had to start seeing a chiropractor to keep all of my bones and everything in alignment. My right hip started causing me serious issues, and I wasn’t walking very well, so it was definitely necessary. The difference that these appointments have made on my body is absolutely incredible, and my OB ordered a belt for my hips, just in case I need extra support in between, but it hasn’t really been necessary for a few weeks now! 🙂

3 weeks ago, M and I went to have a 3D ultrasound done and that was when my sister found out that we are having a little boy. She passed the word along to both of our moms and they all threw us a reveal party! It was sooo much fun! When it was time for the little man’s gender to be revealed, we were called onto the porch and given a water bottle to hold. We were then given an envelope with koolaid mix in it, which was to turn blue or pink when added to the water. I was far too nervous to poor the mix in myself, so my mother in law did the honors and the water turned blue! We were both so shocked and absolutely elated (as we still are)! To celebrate, M and I went and made our first purchase for our little boy… A carseat and stroller set! 🙂 So, the planning continues, but we still have so much time! It almost feels like too much time sometimes, because we are so anxious to hold this little man… Especially his daddy! He says it’s his turn to carry him.

Well… All of the wonderful things aside, this pregnancy does still come with risk. And I was reminded of this last week at my ultrasound with my specialist. First… They confirmed that there is indeed a little man growing in my belly (he has his daddy’s chin). Next, they took measurements of all of his organs. We were met with some difficulty, because this little guy did not like being spied on and kept kicking the wand on my belly and moved around with his hands in his face, so we couldn’t see him! Eventually, he ended up curled up on top of his legs, hands in front of his face, and completely turned towards my back. Because we couldn’t measure his legs all the way, he measured a little small, but no one was concerned in the least bit except his momma. All I want is a big, strong boy! Anyway… Everything was beautiful and this little boy is definitely active! But after everything, I was reminded to be extra cautious from here on out. Why? Preterm labor risks.

I know… Way to crap on my Wheaties, doc. Am I right? So, I have been having some seriously contradicting feelings. While I have been working extra hard to practice remaining calm, I have also been a bit of a bag of nerves (counter-productive, I know). From what I have heard and read – yes, reading is dangerous sometimes – most pregnant women with EDS/POTS make it 30 weeks before hitting early labor. You might ask “can’t they stop it?” Well… No, not really. How my doc explained it, was that, when the body goes into labor, certain muscles contract, while certain muscles loosen to make room for baby to make an easy journey. Apparently, the problem with EDSers, is that when our muscles loosen, they mean serious business and labor will progress rather quickly! Don’t get me wrong, I see how this could be a potentially awesome side effect. However, no mommy wants a premie. So right now, the focus is keeping me calm and avoiding preterm labor in any form! Honestly, logically, I know I don’t need to be too concerned, because that 30 week timeline, is most typical for women with Type I and II EDS, and a consultation with a geneticist, confirmed suspicions of type III for this Zebra, though she did recommend getting tested for genetic markers with little man once he is here, so that his risk can be assessed. But I ask you… When is the last time you met a logical pregnant woman?

That’s what I thought. So… My emotions tend to take over from time to time, causing me to just wish these next 16 weeks would fly by, so that I know my son is okay and so I can get him here safely.

Here are a few photos of our little man for you! Yes… Still a little creepy, because he didn’t have much fat yet.

You will see him kicking back with his arms behind his head… This is how his daddy sleeps.

You will see his little fist rubbing his eye… My favorite!

And you will see his profile… Note his Daddy’s chin. 🙂

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Well… Thanks for letting me share with you! It has been a pleasure. I wish you and yours a wonderful day and send you all off with Zebra hugs and love until next time! 😀

On Being a Pregnant Zebra

It’s been quite a while since I last wrote, and I hope I find everyone well!

For those of you who don’t know by now… My eggo is preggo! Yep! I’m going to be a mommy and am due December 9th!

I just thought I would write a bit about what it’s like to be pregnant with two chronic conditions. Mostly, this is meant to be somewhat therapeutic for me, because I’ve been terribly frustrated lately.

Wanna talk about being tired? Let’s go there! 😉 So… I have two chronic conditions… One makes my blood pressure consistently very low, and therefore, wipes me out. The second causes enough pain during the day, that small actions are quite laborious and I am exhausted afterward. Combine the two and we have… FATIGUE! Yay… not.

Now… Add pregnancy, which already comes with its own variety of fatigue – really, it’s a category all in its own. Now, add a second job. No… Add a second job, which is a night job that involves driving slowly all night long.

This means two things: One, it’s mosquito season! Two, my hip is in for it!

Now… For those of you who may not remember, EDS is a connective tissue disorder. Meaning that the muscles and ligaments holding my bones and joints in place would lose just about any and every beauty contest out there. They just don’t do the job. So, this alone presents its own challenges. For example, my hips are probably no stronger than that of a 93 year old, and even starting at 8 weeks of pregnancy, my most troublesome hip (the right one) was yelling at me to stop that! Because a woman’s hips begin to widen and all of her muscles and joints begin to loosen during pregnancy, this puts my body in a precarious, and slightly fragile state. Needless to say, it’s incredibly frustrating. If I bend over too many times in a day, I end up with a very stylish limp. If I even walk too much in one day or too quickly, I can feel the bones shifting. Don’t even ask me to jog… I feel those bones beginning to pop and grind on their way to a place that they really have no business being!

This wonderful hip dysfunction has opened the door to all kinds of leg pain from my foot, all the way up into my hip bones and lower back. This has made sleeping difficult, as laying on my sides is uncomfortable, yet I’m not supposed to lay on my back, and tummy sleeping isn’t an option! Introduce: the body pillow. I’ll give the thing the credit that it’s due… It does help. It’s just NOT enough. Next stop: pregnancy pillow, here I come!

This has also made it pretty difficult to do my night job sometimes. I don’t know if you have ever really paid attention or thought much about it, but when driving, you use the muscles all the way up into your lower back when you hit the gas and then switch to the brake! I never really understood this until this summer. I mean… Sure, it makes sense, but wow! What work out, when those bones are also constantly on the move! To help ease the discomfort, I bring along a full sized pillow to put behind my back and sometimes, to sit on, but only on the right. This really, really helps, since I’ve begun to notice how crooked I feel when I’m driving.

Now, my hips do not suffer alone. Remember, all of the muscles and joints begin to loosen. This means that the shoulder I injured a while back, has reared it’s ugly, popping and clicking head. This is just another thing that I’m sure is not helped by driving, because it’s not always just a straight shot. No… A lot of times, I’m going into people’s driveways, or around this house, or that business. I don’t mind it, really. The work isn’t terribly difficult (aside from staying up late without any caffeine) and it’s nice to save some extra money for when the baby gets here, but it’s all definitely taking its toll. Of course, at this point, I’m not sure what to blame on pregnancy, and what to blame on 12+ hour work days.

And then we have the beautiful POTS… This guy… This guy is just a liar.

For some very lucky women, POTS symptoms will subside or disappear completely, though it’s sometimes not until later in pregnancy. So far, I’ve been such a yo-yo, that I think my string is getting completely tangled, and one day I might just unfurl, flop downwards and just spin around until someone untangles my string and reels me back up again. For the most part, my tachycardia has been worse. This definitely sucks. And with the hot weather and my body being so bad at regulating its temperature, my tachycardia has been even worse. Thank god for two AC units in the house! Also… For a work truck with AC, since I’m not home much anyway. In any case, hot weather means blood pooling. Blood pooling means swelling, and this means hands and feet that burn and sting. Also not fun, but not terrible to deal with. Fortunately, my blood volume has been wonderful and I am not anemic! Unfortunately, this means MORE blood pooling in my future. I have had a few “burning head, almost black out” episodes, but so far, I’m okay on that front. I’m crossing my fingers, toes, elbows and knees that I am one of the lucky POTS mommies! Wouldn’t that be wonderful?

The only other complaint I have, as of late, is these dreadful headaches. I have been prone to intense complex migraines in normal life, and just last night, I found myself laid out in bed with a full blown migraine and my whole body just hurting. I’m sure this blessed congestion isn’t helping much, but from what I understand, this is a normal pregnancy problem! Yay, I’m normal! No? Well… I was being hopeful. So hush. 😉

Now, I’m sure some of you have wondered (or maybe I’m just full enough of myself, that I assume you have wondered) what exactly are the risks of being pregnant and giving birth with POTS and EDS?

I wondered the same thing, and after doing some of my own research, which mostly terrified me, I presented this question to my doctor (who must be an angel or a saint, I’m not sure which, yet). Basically, the scariest thing that I face, is preterm labor after 32 weeks (on average). Now, some not so lucky women face the risk of hemorrhage in delivery or rupture of an organ or two, but luckily for me, this would be unheard of with my TYPE of EDS. Other than that, I face the risk of severe hip and shoulder dislocation during delivery, as well as the possible need for a c-section or hysterectomy (which is a risk with c-section anyway). I will need medication throughout labor and delivery to help keep my blood pressure up, but that’s fine with me! I’ve heard that it can give you more energy!

After seeing a specialist and talking (in great detail) with a genetic counselor, the risk to the baby is zero. Basically, it all falls on momma! I take this as great news! The bottom line is that, (as my doctors have put it) as long as I’m okay, the baby is okay. So, although we are both going to be pretty over tired still for the next few weeks, we will both be fine! Don’t worry, though! I’m being careful! Trust me… Being a high risk pregnancy is scary enough, so every little pain, or cramp or twitch usually leads to a phone call with my nurse, Kathy. -she knows me well by now. 🙂

Speaking of my wonderful nurse… She is just as angelic as my doctor, who has set me up with a maternal fetal specialist, a genetics counselor, a geneticist, and next… A neurologist! She has also spoken with me in detail about how we can help my joints in delivery by putting me in different positions than normal, and having an OB surgeon on stand by for c-section. (though… I kinda thought they already were…???)

Anyway, that was a bit long winded, but I finally had a few minutes and I thought I would just share my unique perspective, as I find that of a “healthy” pregnant woman just as unique!

Love and Zebra hugs to all!