Tag Archives: EDS

Baby EC

Baby EC arrived on September 22, 2015 at 3:21 pm via emergency cesarean section. He was very small… 5 pounds 8 ounces and 18 inches long. By the time we left the NICU, he was down to about 4 1/2 pounds.

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He was so tiny and it was scary seeing so many tubes, wires and monitors on him. I couldn’t see him for 24 hours after he  was born and a whole day aftet that before I held him for the first time.

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He is now 10 weeks old. He weighs 9 pounds 5 ounces, and is 21 inches long. He is in the 1st percentile in both weight and height for baby boys his age… so he is still extremely small. He looks like a 2 week old instead of a 2 1/2 month old.
BUT. He is so alert and meeting his milestones on time so far. He is growing well from where he started, according to his pediatrician.

My whole pregnancy was very difficult, as was the birth.

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We don’t know why he is so small.  He had problems at birth that landed him immediately into the NICU. He did have an unknown true knot in the umbilical cord that could have been life-threatening if i hadnt needed a csection for other reasons. I freak out every time I think of how it could have gone down… I can’t imagine leaving that hospital without my precious little man.

Those were the longest and most difficult days in the NICU. My poor boy went through so much in the first days of his little life.

We are in a good place now. Baby EC seems to be healthy, although it will be some time before we are certain that there are no lasting effects of him breathing in fluid at birth and the lack of oxygen to his brain.

We will be going to a geneticist in a few months to test him for the connective tissue disorder I have. EC has a 50% chance of having Ehlers-Danlos Syndrome. I pray that he doesn’t have that, or Chiari Malformation,  the condition I have had 2 brain surgeries for. Both are genetic.

Despite the difficulties and stressful times we’ve been through in the past year, life with baby EC couldn’t be more perfect. He is absolutely amazing and stole my heart from the second I met him.

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NaBloPoMo Day 3

Here I am again, only 3 days in to this commitment and already feeling like I’m struggling.  I think it’s just because I procrastinated writing and now I’m not feeling well this evening.

Might as well use this to my advantage and bring up the topic of my invisible illnesses. Well… not all of them, but the main three. These three and all the rest are all connected. It sucks, and unfortunately I’m finding others through my blogging journey who are suffering with the same monsters.

I have Ehlers Danlos Syndrome (EDS), which is a genetic connective tissue disorder. I was not diagnosed until 2011.

I also have Chiari Malformation (CM), which is a congenital problem with the brain herniating downward and putting too much pressure from the cerebellum on the spinal cord.

In my case, this caused a fluid filled hole inside my spinal cord. I still have nerve damage and some paralysis in my fingers.

I had decompression surgery in 2009 which involved removing a piece of my skull at the base of my head, removing parts of two vertabrae, cutting the protective sac that surrounds the brain to patch in synthetic material for enlargement. This allows the brain to have enough room so it won’t damage the spinal cord any further.

Also, I have Fibromyalgia. These three illnesses have been diagnosed together in many patients with EDS.

EDS also has quite a few subtypes. Some of them are identified by genetic testing. Others… not enough research has been done to give a clear diagnosis. Sometimes the subtypes even cross.

Enough of the boring medical terminology though.

EDS makes me hurt badly in almost every joint my body has. I dislocate joints multiple times a day. When I sleep, my ribs, hips and thumbs usually dislocate and wake me up.

I get lots of bad headaches from the CM. My neck is unstable, partially from EDS but moreso after the surgery.

Fibromyalgia causes multiple symptoms and widespread skin pain for me, but the brain fog is the worst. My memory is that of an elderly person. I struggle with putting my thoughts into spoken words. It gets quite frustrating.

Now my head is hurting worse. I took medicine. It usually makes me sleep
I’ll try to do better with this tomorrow.

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Things I Collect: Part 1

So I’ve decided to do a series of posts on things I collect.  I collect a lot of different things, mostly because these things make me happy!

Being chronically ill and being unable to do a lot of things I once enjoyed, these collections help fill some of the void I have from being mostly homebound, especially during cold or rainy weather. (Which has recently started where I am… cold and rainy. I’m afraid Autumn weather won’t last long if at all).

I’m going to show a partial collection today, because some of them are still packed away from the move. The most special and unique ones are still in a box, but I will get them out as soon as I am up to the challenge 🙂

So I suppose you’re wondering what this collection is…

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This is a part of my chopstick collection! The best are yet to come, but these ones are pretty cool too.

I actually use these chopsticks a lot… but not as eating utensils (I have regular ones for dining in my kitchen. Those ones are plain and uninteresting. )

These are the chopsticks I use to put my hair up with sometimes, in different ways. One of my fellow bloggers, Anouchka from LifeOfBun, actually asked me to do this post. She uses chopsticks in her hair too, and has a great tutorial on some of her styles here!

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These aren’t technically chopsticks, but I stuck them in here anyway. They are called hairsticks. They are a bit difficult to work with because  their width and my thick hair don’t cooperate. But they are so adorable I don’t mind a little frustration to make them work!

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These are made of a special kind of wood… I forgot which kind, but they came in a set a friend brought feom Japan. I love the shape of the tops!

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These are quite unique and have lots of different colors and textures. I wasn’t able to capture all of their amazingness with my camera…

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These are plastic chopsticks… I love the black base and the colorful contrasts towards the tops. I wear these a lot too.

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These came from an Asian restaurant in Chinatown years ago when I went to San Francisco for a few weeks. I don’t own many clothing items that match these, but I love the gold detailing so I wear them anyways!

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These are one of my favorite sets. They are shorter than most of the others and much simpler to use, plus they are lovely, I think!

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These last two are from the wooden set from Japan. They have interesting patterns. The thing about the Japanese set is that the chopsticks are very long. I wear them on occasion but they are troublesome and I always end up poking myself during use. I really want to use a dremel tool or something to shorten them up, then they would be a joy to wear!

Even though I don’t get out much anymore, I still use these some. Plus I have them arranged in a vase on my nightstand so I can look at them and get instantly happy!

So that’s it for part 1 of my chopstick collection.  I can’t wait to show the rest! Several of them are super old and have history behind them 🙂


Loneliness…

For some reason I woke up feeling very sad and alone. I’m so tired of being a ghost of who I once was.

I know I’m supposed to be positive and think of gratitude… be thankful for what I can do… blah blah blah… but right now, seriously, I just don’t give a fuck.

That might seem harsh coming from me, but it’s the reality of where I’m at right now… and where I’m not.

Here is some music for your listening pleasure… it’s my life’s theme song now.