Fashion for the Chronically Pained

My fashion accessories for today:

And since I know everyone is dying to know just how I get my "look", I'll let you in on my secret.

First, I started with a pair of black leggings (leggings because they fit well under braces, and black because, well, they make the black braces slightly less noticeable?).

After that I threw a knee brace on each leg for a little stability and just to really make a statement (I believe the statement I was going for was something like "please, knees, stop giving out on me and let me get through today. Oh, and maybe don't slip out of place because I'm getting really tired of the nerve pain that comes along with that").

Anyway, I then completed this awesome ensemble with a pair of cute running shoes since, you know, cute flats are out unless they can accommodate orthotics (which they never can) and heels are totally and completely, just... NO. I made sure to get them in a trendy color so that I look like I'm fashionable and athletic and not so much like a crippled grandma.

So there you have it.

I know, you're jealous of my style. I can't help that my chronic illnesses make me so darn sexy :P

Worries

I worry sometimes...

Ok, that's a lie, I worry ALL the time (thanks, Anxiety). Sometimes, however, the things I worry about are more justified than others. Today, I had a thought: I realized that I may have doomed my children to a horrible fate. I've thought about and "guilted" over it before, but today it really hit me so specifically that the guilt has gone to a whole new level.

See, my children each have a 50/50 chance of getting my health problems. I didn't know this when I was wishing, hoping, and praying for a baby that didn't seem like she'd ever come, and I still didn't know this when we decided to have a second little one join our family.

At the time I thought I was an anomaly. I thought my issues were mine alone; my fluky, messed up body was just a mistake. It wasn't until my second child was a few months old that I figured out what was wrong with me, and that it was a genetic condition.

Sure, there is definitely a chance that neither of them will get it, and if they did get it, this syndrome is so varying that their symptoms might be much milder than mine. On the other hand, they could be worse than I am, much, much worse :(

It's difficult to tell at this point, and so I worry.

I worry every time they wake crying in the night, thinking they might be in pain from a day of running and just being kids. I worry when my little guy gags and chokes when he eats and drinks, just like his mama. I worry when I watch my daughter walk and see her arches collapse as she over-pronates. "That's normal, they're healthy" the pediatrician tells me, and I try not to let my fears affect my little ones; it's just so hard knowing that my pediatrician said the same thing about me.

Anyway, today I was thinking, and dreaming about what my little man would end up doing with his life, and it struck me that I may have ruined him. He is so athletically inclined; at 18 months he already kicks a ball better than a lot of three year-olds I know. He loves balls of all kinds, he loves to kick and throw, and run and jump. It's fun to think of where he might go with his skills. That is, until the image pops up of a very short, painful athletic career, filled with injuries and frustrating limitations. What if I have stolen his dreams from him??

Obviously, I can't do anything about it now, so worrying and feeling guilty at this point is silly, but sometimes I just can't help it. I've never imagined a future for my babies in which they were anything but healthy and happy, and the thought of anything less is just crushing, especially knowing it would be my fault. The DNA I gave them, my egg, my genetics... Me.

Garg. Apparently I'm in a sulky mood this afternoon... I just wish I could see into the future and prepare for what lies ahead.

I hate not knowing.

Top 5 Reasons Having POTS is Like Being Pregnant...

1. You need to pee every 5 minutes...

 

"Drink your weight in water" they said, "it will make you feel better" they said.... Seriously, nothing makes me feel like a pregnant lady than having to wake up to pee a couple times a night. Keeping my blood volume up is good I suppose, I just wish it didn't leave me running to the bathroom all the time.

2. You feel utterly and completely exhausted...

 

They say just sitting around is like running a marathon while you're growing a baby, and as it would happen, they say the same about having POTS and being upright. Apparently all that tachycardia really takes it out of ya!

3. You LOOK 6 months pregnant...

Personally, I think there is nothing cuter than a nice little baby bump... unless of course you're not pregnant. Since your body can't seem to figure out how to make your insides function properly, eating anything just leaves you with a loverly little bloat belly.

4. You feel nauseous...

You feel sick when you wake up... and a lot of the rest of the time too. Morning sickness?? Why no, just another effect of that dysfunctional autonomic nervous system.

5. You feel dizzy and lightheaded...

When you're pregnant, the changes in blood volume and compression of blood vessels can leave you feeling dizzy and lightheaded, or even make you pass out... Which is, of course, just par for the course when you're a Potsie :)



Now if only POTS had some kind of awesome end result for all the suffering!

"Is This Normal??"

"So, you can't do this?"

You know you you have EDS when you are constantly asking people around you if the things you do and feel are normal... You can't trust yourself, seeing as you went YEARS thinking all kinds of crazy junk was perfectly normal. lol.

When you're walking along and suddenly...

That moment when you're walking along and you go to take a step and for some reason your ankle rolls and your foot just decides to be sideways.

And you're like, WTHeck, Foot? Since when has sideways EVER been an appropriate position when walking? It's not like we're new to the whole walking thing either, it's been some 20 odd years now, we should really have this down by now... GET IT TOGETHER ALREADY! 

And then you look like a lunatic because you literally just tripped over your own foot, and then had a conversation with it.

Gotta love life with EDS ;)

That awkward moment when you realize your collegen is faulty...

That moment when you realize that most people's bodies are like handcrafted keepsakes, painstakingly created from the best quality materials possible... and yours is like a "made in China" piece of plastic from the dollar store.

At least I'm entertaining 'til I break?? Which means you've got about five minutes ;)