Monthly Archives: January 2013

Just A Whisper In The Dark

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Life takes us sometimes, grabs us tightly around the waist, turns us upside down, and shakes us until we are mere shadows of what we once were. Then, just as abruptly, it sets us back in an upright and locked position, only without everything solidly locked back into place.

This is when healing and growth takes place.

It’s hell.

Some of us heal faster than others with the kindness of strangers bestowed upon us. Strangers who find all that which we’ve lost and gift us new things we need to deal with this new “self” we’ve been gifted.

Some of us, even with the kindness of strangers, don’t heal as fast. That’s okay too. It’s frustrating but we are all on our own journey. Your journey will not look like her journey or his journey or even my journey. Sure, we can sit around a campfire, compare notes, and possibly even realize we have some things in common but ultimately, we are all on our own island, struggling to survive.

Technology has made it easier to connect between these islands and created a virtual campfire.

But it’s also made it easier for those who don’t support us to fling unsupportive words our way as we try to share and reach out for the support we so desperately need.

So we find ourselves stuck.

Stuck between needing to reach out to those like us and not wanting those who don’t understand to turn our cries for support into fodder for their attacks.

We might freeze. We might get silent, watchful, worried, allow the fear of attack to keep us from fully healing. Until.

Until we realize that it’s OUR STORY, and we have a right to share our story. We inhale, brace ourselves, and begin to speak up. Maybe a whisper at first, but eventually it turns into a barbaric YAWP as we realize we are above those who would grab us and keep us down, that in order to heal, we must learn to shake off the chains of that which has held us down in the past.

It’s important for us to give ourselves permission to be that which we think others won’t let us be as we move forward. No one has the right to tell you who you are…aside from yourself. One of my favourite quotes is from Eleanor Roosevelt: “No one can make you feel inferior without your consent.”

No more complicit participation in accepting that I am anything less than ME – a mental health advocate, a Mom, a girlfriend, a woman, a daughter, a sister, and someone searching for herself in the wind.

This is me.

Working toward my barbaric YAWP.

If you tweet it, it will trend….eventually

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When I first started #PPDChat, I had no idea where it would go. Or if people would even want to talk about Postpartum Mood Disorders on Twitter.

Postpartum Mood & Anxiety Disorders are often discussed behind closed doors in hushed voices. It’s not the sort of thing you climb up to the rooftop and scream about. You don’t post a sign along with the “It’s a girl!” or “It’s a Boy!” saying “I have a Postpartum Mood & Anxiety Disorder!” No. It’s not like that at all.

It’s quietly survived, shoved to the back of the table, ignored, discarded as a topic of conversation.

Or at least it was.

Through the blessed advent of technology, more and more women are using their keyboards to raise their voices –detailing their experiences with Postpartum Mood & Anxiety Disorders. Husbands are sharing too –their survival of their partner’s struggle– and some, even their own struggle with depression or anxiety after a child joins their lives.

Postpartum Mood & Anxiety Disorders survivors and fighters are not so silent any longer.

Then today, we got really loud and this happened: #PPDChat trend

Yes. That’s humble #ppdchat, trending. On Twitter. Twitter, where there are millions of tweets every day, thousands of tweets per second.

I don’t know what #PPDChat did to deserve a spot on the trending list – we were just having our weekly moderated chat at 1pm ET. And then BAM. On the list.

Whatever algorithm gods saw fit to smile upon us today, thank you. Thank you for shining your light on a humble little chat dedicated to destroying the stigma and misinformation of Postpartum & Mood Disorders –dedicated to allowing women across the globe to connect and feel a little less alone in their dark vortex of pain.

But most of all, a HUGE THANK YOU to every single person who has ever participated in a chat. To every single person who has ever said thank you or encouraged me to keep on keeping on with my work with #ppdchat. Every second of it is a blessing and seeing the community in action is mind-blowing –every time. Even to those who only read along with the chat, thank you too for following us. Because without participation, without support, this, trending on Twitter for just a short bit, would never have been possible.

Thank you. Thank you all for raising your voices and silencing the stigma and misinformation – for supporting each other – and for being AWESOME.

We did this.

Together.

Because we are not alone in the dark.

My deep dark painful secret

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This year, I plan to work diligently to blog more, to write more, and to find my voice again. It’s been a rough couple of years in my world and it’s been rocked in quite a few different directions. 

I’m writing today to share with you one of the biggest way in which my world has been rocked in the past few months.

First, if you have followed my blog for any amount of time, you know that I found love in the summer of 2012. He still takes my breath away and is more than I could ever dream of having in my life. He and I truly are soul mates –we don’t just finish each other’s sentences, we steal each other’s thoughts.

In order to explain to you fully what’s going on with me, I kind of have to back up a little bit. And then jump forward, then back, etc. So hang on. This might get bumpy.

In the summer of ’95, I fell while working. I nailed the middle of my upper back. It hurt. A lot. To the point where I could barely move. But, I was young and naive so I just powered through it. I continued to have issues with upper back pain throughout college, particularly after a car accident. I saw a few doctors, including one who told me I was fine and there was nothing he could do for me –that I just needed to let it heal.

So…I accepted this “pain” as something I would just have to live with. Most of the time, I was fine. By this time though, I had developed a “tic” of popping my back and my neck. I pop my neck and my back every few seconds now, and it migrated to my shoulders eventually as well. These days, I am unable to sit still because I am constantly adjusting my body in search of the most comfortable position.

Then I had kids. While pregnant, I had severe issues with pelvic alignment. My pelvis popped out of alignment and would stay out of alignment nearly my entire first pregnancy because my doctor dismissed it as “normal pregnancy pain.” I had no choice but to accept this as he was pretty much the only OB in town. After birth, I felt better but still had back and neck issues, made much worse while my pelvis was out of alignment.

With each pregnancy, I continued to have pelvic issues. Although the OB’s for my second and third pregnancies did not dismiss it and I received physical therapy for the issues.

About a year after my third pregnancy, I decided I had to lose weight. I had ballooned up to 281 lbs and that was just not acceptable. I could barely stand up from a seated position and my feet felt like they were on fire all the time. I don’t even want to talk about my back – I was in constant pain.

So I watched what I ate and exercised – first on the Wii then out and about with walks, hikes, etc. I lost 50 lbs in six months.

Then I went through a divorce. Moved home with my parents. Worked hard to continue exercising but eventually, I became so depressed I stopped. Also – I injured my knee while riding the exercise bike and was forced to stop, scared to start-up again for fear of re-injury.

Fast forward to this past summer. I started to go to the gym with my boyfriend. I hit the pool –hard. Within just two months, I was up to swimming breaststroke a total of 120 minutes a day (twice a day). I felt AMAZING.

Then… I didn’t.

I was exhausted. Tired. To the point that I could barely keep my eyes open during the day. I slipped in and out of consciousness during the day and yet still slept soundly at night. My left arm wasn’t functioning properly and my eyesight was blurry when I woke up and for most of the day. The simple act of even walking from the bedroom to the bathroom wore me out before I even got out of bed to do it.

At first, we thought maybe it was PMS. I’ve had sheer exhaustion days right before Aunt Flo arrives — but then AF came and went and I was still exhausted.

I tried to swim again. I swam eight minutes before my head began to pound and my eyes felt like they were about to pop out of my skull. Defeated, I slunk from the pool, infuriated, confused, and extremely worried about myself.

We talked over the possibilities. Could it be related to diverticulitis? (I’d gone to the ER with a serious stomach pain issue earlier in the summer – we had since decided it had to be diverticulitis as it wasn’t gallbladder related and only happened when I ate nuts or seeds). No – because that wouldn’t explain the extreme fatigue and grogginess plus I didn’t have stomach pain.

What if it was … wait.. neck related? I decided, the weekend after my birthday, to go walk a 5k for Mental Health. IF it was neck related and not systemic, I wouldn’t be fatigued afterward as walking isn’t jarring on the neck, right?

I walked the 5k, no problem.

I started sleeping with a neck pillow that night, and felt slightly better the next day –almost no fatigue.

We made an appointment for me to see a doctor the following Monday. After sharing with her my entire story, she suspected that I had something called “Ankylosing Spondylitis.” She wanted to refer me for a blood test to check for the marker. Thing is, after some research, you can still have it EVEN if you don’t have the marker. I don’t have health insurance so I can’t afford expensive blood tests, particularly ones which may be inconclusive.

The more I read about AS, the more I am positive it is what is wrong with me.

Ankylosing Spondylitis is a form of arthritis which centers on the neck and the spine. It causes all sorts of issues similar to the ones I have experienced. Flares are exactly like the episode I had in September and the eyesight issues are a well known accompaniment. Ultimately, AS can be responsible for fused vertebrae.

For the most part, I’m doing okay. Sure, I have my bad days but for now, the good ones are outweighing them. But when I have a bad day, the pain and the pressure causes what’s referred to as a “brain fog” and I can’t think straight. I’m forgetful now. Sometimes downright stupid. I will talk and get words wrong or mispronounce them. Or I’ll completely forget what I was saying mid-sentence.

So if I tell you I’ll do something and I don’t follow through – it’s okay to push me or remind me. Because chances are I have genuinely forgotten as a result of all of this. It’s terribly frustrating and embarrassing.

Right now, as I sit here, typing this, I’m having to blink quite often because my vision sucks this morning (and it’s not due to bad eyesight, it’s the neck thing) and I’m also forcing myself to hyper-focus because I am in a bit of a fog today. I imagine it’ll clear by three or so – it typically takes all day.

I am waiting for a new swimsuit from Land’s End so I can get back in the pool and swim – it’s one of the few exercises which is known to help with AS. What’s most frustrating about it is that I can no longer sit or stand for extended periods. So my day is now a delicate balance of sitting, standing, and making sure I am not overexerting myself into a flare. It kinda sucks but..it is what it is.

Exhales.

So there it is. That’s what I am dealing with now, on a daily basis. I keep telling myself it could be worse. I could be unable to move at all or need to rely completely on someone (and some days – I do need my boyfriend to help me stand because this thing also affects knees and well – standing is pretty damn hard without knee power). For now – over the counter meds work. We recently purchased a new pillow for me and it has helped so much I haven’t had to take meds. I may need to take meds today though. And that’s okay.

I’m a survivor. I’ll survive this too.