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

Good-bye, 2015

2015... If I could describe you in one word, it would be "struggle"--which sounds terribly depressing (and a good bit of it was) but with struggle always comes learning and self-revelation. Both of those things are very good and productive, I'd say.

I've struggled this year, mentally, with so many issues that have plagued me for much of my life: anxiety, panic, depression, anger; emotions that often threaten to consume me and take those closest to me as collateral damage. Physically I've grappled with the same old limitations and flaws while my body and mind were challenged by new and ever more difficult challenges. I've struggled with my faith, feeling it being tested, knowing that I need to hang on with increased tenacity, and yet many times being completely unable to summon the energy or motivation to keep fighting for it, or anything else for that matter.

This year I've wrestled with inner demons and outside triggers.

Karl graduated this year and started to work full-time as a real employee of a real company (with benefits!) We are now technically "middle-class" and our living situation is quite comfortable. My children are beautiful, smart, amazing, and I love them very much. My marriage is good. We both have our flaws and our own challenges that test us and our relationship, but he is a good, hard-working man, and we try our best. We have clung together through every issue that has faced us. We love each other despite anything and everything that has tested us.

I thought for sure this was the point in my life I was waiting for, the moment I could stop struggling and finally LIVE and be happy. But that never happened.

I still feel as though I'm constantly treading water, barely able to keep my head above the surface.

My life is good! So why am I not?

This year I gained 20 lbs. I've become more addicted to escaping into my smart phone than ever before--a fact that pains me to no end, but I still feel powerless to stop it. I'm exhausted and my body seems to love to throw one thing after another at me. If it's not POTS, it's pain, if not pain then anxiety, if not anxiety, then stomach issues... I always think that if I could just get through whatever "flare" is laying me out today, I'll get a break and can get back on top of things--but the break never comes.

So, one of my revelations that I've come to this year (if you were wondering where on earth this was all going) is that I have a physical disability and a mental illness.

Ugh. I cringe just writing that. Those terms just seem so... terrible. And seriously, could I possibly any more dramatic??? But, I've realized it's true. It is my truth and I need to accept it and claim it. That's really the only way I can stop making excuses and start making accommodations. To equip myself with the tools I need to live my life.

It seems a little silly, I mean, of course I've always known that these issues were a problem, but I've tried so hard to be "normal", to not appear different or weak. 2016 is the year I finally come out of the "normal/healthy-person closet" and admit and accept what I truly am: imperfection.

From my DNA to my mind, and everything in between, I AM IMPERFECT, just like everyone else... which seems to be the hardest part to accept. I need help. I don't need a mask of ability and normalcy to hide behind. I am me, I struggle, I am imperfect, and from now on, that's okay.

This next year is going to be better than my last year (sorry, 2015), because I've learned a lot. I am positive I will still struggle, but I have come so far (and struggled for so long), I can be better. This year I will be a better wife, mother, and person. NOT perfect--as I've always aimed for--but better.


And that is okay.


So, 2015, thank you for the blessings and moments of happiness (I must acknowledge that those were there too). I really have been thoroughly blessed by my family (big and small), with Karl's job situation, with friends and support, and so many other things. I can see the good, even when I have a hard time feeling it.

However, thank you especially for the struggles. Without them I wouldn't be seeing the glimmer of light at the end of my longest, darkest tunnel.

Even if it is just a glimmer.

Good-bye, 2015.

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.

 

 

 

 

My Struggle: a tale of health, or a lack thereof.

This is me... I don't look particularly sick, do I?

I have to apologize for my negative attitude lately. I don't mean to complain so much, but I am truly struggling right now and I'm realizing that no one really knows or understands why. 

Totally my own fault, I'll admit it. 

The thing is, I have some health issues that I don't like to talk about because:

#1. Until very recently I didn't have many answers.

and 

#2. I'm tired. I'm tired of people thinking I'm overly-dramatic, a hypochondriac, or a crazy person. I'm tired of hearing through the grapevine that so-and-so said I'm a liar or an attention seeker, just making things up for sympathy. I'm tired of feeling like a weirdo. I know I don't look like I have anything wrong with me, but that doesn't make me a faker. It's hard enough living with something that's stealing away parts of your life and having no answers, but then to have everyone from doctors to random acquaintances being... well... the exact OPPOSITE of supportive, it's really quite demoralizing. 

So I just don't talk about it. 

However, in my new quest to be more honest about my life and struggles, I've decided to finally tell my story. 

It's long, but here goes...

I've been in pain for as long as I can remember. When I was little I honestly didn't realize that it wasn't normal to be in constant pain, I thought everyone lived like that. I was tired all the time, I didn't have as much energy as all the other kids. I dreaded activities that took a lot of movement. I had my first migraine at age 7. I was pathetically skinny even though I ate a ton. I had palpitations and an incredibly fast heart rate. I was very clumsy, my ankles would give out for no reason, and it seemed like I could injure myself just walking down the street... BUT I was flexible. My arms and legs were hyper extended, I could fold myself in half backward, and put my elbows behind my head... Always great tricks to have in your repertoire as a kid ;)

Eventually, my mother realized that something was up and took me to the doctor. 

Just before my 11th birthday I was diagnosed with graves disease, an autoimmune thyroid disorder that generally affects middle aged women. 

After about 4 years on medication, (with my mom fighting the endocrinologist to keep her [the dr.] from "killing" my thyroid and dooming me to meds for the rest of my life), I finally went into remission! I've had a few relapses since, and I'm just waiting for the day that my thyroid gives out all together, but for the most part I've been very blessed in that area. 

Unfortunately, going into remission didn't solve all my problems. I did feel a ton better, but I still hurt, I had headaches all the time, I was anxious and stressed, I felt sick every time I ate, and I still had palpitations, a racing heart beat when I exerted myself even a little, and weird chest pains.

My awesome mother took me to the doctor for so many random complaints over the years, for everything from the funny way I walked to the odd bruising that once appeared on my chin out of nowhere. I'm so very grateful she took my complaints seriously. However, I never found any answers to why I was the way I was. 

My pediatrician did tests to rule out arthritis or other diseases as the cause of my joint pain... and came to the conclusion that it was most likely just growing pains. He was kind enough to send me to see an orthopedic specialist just to be sure. 

After some x-rays and exams, HE told me that I was perfect. There was absolutely no reason that I should be in pain. As flattering as that was to hear, I was actually still in pain (apparently my body didn't get the memo) and he just sent me on my way with no other options or leads.

I was so frustrated. 

In high school I was trying to be a ballerina and be on the ballroom dance team... I loved dancing so much, but it was tough. Besides the pain and little injuries it caused me, I started getting chest pains that were more than a little worrisome. Complications with the heart are scary! 

Once again, we went to my pediatrician, and he sent us to the cardiologist. I had a bunch of tests done and even wore a heart monitor for a day, but they couldn't find anything really wrong. I should have been fine, as far as they could tell. The only really odd thing they noticed was that my heart rate tended to go from abnormally low to very high, but apparently that didn't mean much to them. So, the conclusion? It was probably just stress.

At this point I felt so defeated. I felt so incredibly guilty that my parents had spent time and money (which I knew they didn't have much of) on doctors and specialists, just to have nothing be wrong with me. I was afraid they'd be mad at me for wasting time and money with my silly problems that were apparently nothing. I started to think that maybe I WAS just making it up.

Maybe I just wanted attention so badly that I was actually creating these symptoms in my body.

Maybe it really was just stress and if I could just stop being so dumb and get over it, I'd be fine.

Or maybe I was just crazy.

I kind of gave up trying to figure out what was wrong for a long time and developed a complete distrust of medical professionals.

Then I started college. I was dancing for at least an hour or two every day trying to become the dancer I had always wanted to be, and trying to get good grades in some tough classes so I could get into the nursing program. 

I was incredibly stressed, physically and mentally.

I started having fainting and near fainting spells, and at the insistence of concerned family members and friends, I went to the student health center. The doctor there told me I had syncope... or "fainting" in other words. He couldn't tell me why, but said it was probably stress.

Awesome.

One day after a pointe class I suddenly got this excruciating pain in my foot. I walked back to my dorm on the other side of campus in tears because it hurt so incredibly much.

My dear mommy took me to a chiropractor/sports specialist we knew from the ward and he told me that a bone had slipped out of place in my foot. He put it back and taped me up to keep it from happening again.

Now, I'm no doctor, but it seems to me that bones shouldn't just "slip" out willy nilly. I knew you could dislocated things if you had some trauma, but it was just a normal ballet class. Nothing special had happened. It seemed odd, but I just figured it was par for the course when it comes to living in my body.

In my short college dance career I went on to sublux a bone in my wrist on two more occasions and have dozens of various injuries, including years of achilles tendinosis that refused to heal. 

*sigh* (though, I know I should be grateful I could do as much as I did!)

On the bright side, after some research on my own (thank you internet!) I did finally get a diagnosis of IBS to explain my stomach pains and how sick I feel all the time, which felt like an absolute triumph at the time. It was short lived, however. I realized eventually that there was not only no known cause or cure, but doctors really don't even know much about managing symptoms :/

This did lead me to more and more research which is how I ended up finding fibromyalgia and chronic fatigue syndrome. I read so much and got pretty excited because it seemed like such a good fit. So many of the odd associated health issues that come along with fibro seemed to line up with my list of complaints.

But once again, fibromyalgia and chronic fatigue have no real known cause, many doctors just treat them like a "junk" diagnosis when they don't know what is really going on. Some doctors think they are just caused by stress and are "all in your head"

So honestly, even with the fibro answer, I kind of felt like I was no better off than when I started.

I've struggled so much feeling like a failure as a spouse because I have a hard time "doing it all". I have felt so bad because I can't do things that Karl enjoys with him, like dodge ball or anything physical. 

Anyway, (relatively) recently, a relative of mine contacted me on Facebook and told me about a rare genetic disorder that she and her daughters have called Ehlers-Danlos syndrome (type 3) because she thought I might have it too. It causes a defect in a person's collagen which makes people hypermobile (or double jointed and very flexible, in other words), but also causes wide spread pain, easy injuring, frequent dislocations/subluxations, skin issues, dysautonomia (problems with the nervous system and blood pressure/heart stuff), easy bruising, IBS, anxiety, and more. It's often misdiagnosed in as fibromyalgia and "growing pains" in children. Collagen is a component of every system in the body, so if it's faulty, it has an effect on the entire body. 

All the stories I've read from people with this disease have been so similar to mine! It's been like the pieces of my life long puzzle have been falling into place, I just needed this one last piece to make it all make sense. I really, truly believe that I've finally found my answer. 

I want so much to get a diagnosis but currently my insurance doesn't cover anything besides primary care visits and I can't afford to pay for a specialist or any testing on my own. And then again, not many doctors are well informed about EDS and the thought of talking to another doctor and being brushed off, talked over, or told I'm fine, gives me enormous amounts of anxiety. 

So here I am. 

Right now I'm having a very hard time. I do have good periods of time where my symptoms are so mild I start to wonder if I've just been a huge baby in the past.... and then I get hit with a "flare" and I remember exactly why I "thought" I was suffering. 

I'm currently in the middle of one of those flares. 

My pain has been so bad lately that even with pain killers taking the edge off, I still can't sleep because of the pain. I lie awake at night knowing that any minute one of the little ones is going to be up, but all I can do is hurt. I get lightheaded when I stand up and I get headaches and feel weak and sick if I go out in the heat. I feel so sick all the time and I have no energy to play with Evie like she wants me to. I have a type of tendonitis in my wrist that won't go away, and as I take care of my kiddos I can feel my other wrist starting to go too. I dread Declan's cries because the thought of lifting him one more time makes my arms want to fall off. He's only three and a half months, but he's already too heavy for me. It all wouldn't be so bad if I didn't have two little ones to take care of, but I do. 

I feel so guilty that I can't take care of them the way they deserve. I feel guilty that we eat out so much because I know it's horrible for us, but I have no energy to cook AND take care of little ones all day. I feel guilty because I just stay at home all day and I still can't take care of everything. I feel horrible for needing to depend on my hubby so much when he's already got so much on his plate. He didn't know what he was getting into when he married me. I feel guilty knowing that if I do have EDS, then my children have a 50% chance of having it too. I don't want them to have this life. I feel like a failure as a mother, as a spouse, and even as a living person.  

I think all the mental stuff is probably worse than the pain right now...

On the other hand, I think Karl and my babies are the only reason I'm still here. The only reason I haven't crawled into bed and stayed there until I withered away to nothing is the fact that they need me. It's all so hard, but they need me, and I love them so much.

Anyway... that was long. If you made it, congratulations! And thank you :)

I'm not saying all this for pity, though I guess that wouldn't be so bad, lol, I really just want, for the first time in my life, to have someone understand. To have someone know what I go through on a regular basis. To have people "get" that when I look put together, it's an incredible feat, and when I seem like I'm sitting around being lazy, it's all I can do to keep myself in one piece. 

I know I don't look sick or like I should be struggling, but I am. 

And I hate it.

What is it like?

What is it like to not be in pain?

What is it like to not be constantly aware of each limb and joint because they aren't always aching, throbbing, tingling, or numb?

What is it like to be able to eat food without pain and discomfort?

What's it like to have the energy to care for your family... Or just yourself?

What is it like to dance, or even just walk, without injuring yourself?

What's it like to feel stable on your own two feet?

What is it like to be able to go out on a summer day and not feel sick, weak, and dizzy?

Or to stand up without feeling faint?

What is it like to feel like the desires of your heart, your dreams, are actually attainable???

I know I should be grateful for the gift of a mortal body, but sometimes it feels so much like a curse...