Awareness, Life

Never Stop Believing (Part II)

This one’s for the girls…
Martina McBride, “This One’s For the Girls”

believe in yourself

Read: Never Stop Believing (Part I)

Less tears, less frustration, more hope. A slight scare that made me schedule that appointment with the GI, an urging to make sure I go from my new doctor, who wondered if there might be two issues going on. I walked in a week later hoping to find more answers, but soon found myself back at square one.

More talking, more assuming, more questioning my anxiety disorder — that scarlet letter — and pointing fingers at the effect rather than trying to discover the cause. Still, I walked back out with a test scheduled for early December, hoping that they would find something rather than nothing, knowing that at least when it’s something, it can be fixed.

More waiting, more ignoring the ever-increasing pain until my insurance kicked in, more talks with my employers to keep them updated, more complaining to my mom. Or, really, anyone who would listen.

Because, truth be told, I was scared.

Thanksgiving rolled around and I woke up ready for the holiday, but my enthusiasm steadily began to decline into the realm of not-feeling-well.

I took a nap.

Then I took another nap.

Then I ate dinner with my family, excused myself, and went back to bed.

Two days of feeling good, then crashing again on Sunday. I went to work that Monday, but as the morning progressed, so did the pain. Dull aches gave way to shooting pain through my stomach, my back, and down to my thighs. At this point, even I was sick of hearing myself whine and complain, so I tried to ignore it, believing it to be that familiar pain, believing it to be nothing.

I promised my mom we would do some shopping and go out to dinner after work — just me and her. I wanted that back again — that me and her, that tag-team, that unbreakable, unshakeable bond. I wanted to make up for all the concern and frustration I had put her through the last few months, where she would be the one on the receiving end of those mood swings, the one to which I vented most of my frustrations.

People say you’re most capable of hurting the ones you’re closest to, and I hated the idea that I had, perhaps even unconsciously, hurt her.

I was tired of retreating, hiding, tired of not feeling well, tired of not having enough energy to enjoy the things I should enjoy, to spend time with the people who mattered most. So when she asked me if I was feeling ok, I nodded, determined to have fun. I wrinkled my nose and laughed at the shirts she held up, tried on warm sweaters, poured over the fashion jewelry. But the pain was once again persistent, traveling down through my back and to my legs, making it hard to even walk.

We ended up going home early that evening, and I curled into bed with Advil, a heating pad, and my dog — one of those had to be a cure, and I was guessing it was the one I could hug — easily falling fast asleep.

The following day, I went to work feeling slightly better, though the pain started to return as the morning hours crawled by.

I called my family doctor.

They told me to call the specialist.

I called the specialist.

Three hours later, they called back and told me to call my family doctor or go to the hospital.

Frustrated at being handed back and forth, frustrated at being in pain and not having a reason why, frustrated at not being able to do my job because of all of the above, I called my mom and dad close to tears. Enough was enough, we decided. My insurance had ironically kicked in that very day, so the decision was made — I was going to the hospital, I was going to find out what was going on.

More tests, more waiting, but this time, we were determined to find answers.

And we did.

The pain, tests showed, was from a collapsed cyst on one of my ovaries that had probably ruptured. I was told to see my gynecologist — for which I already had an appointment set up for the following week — and was discharged. Relief in the form of printouts and labwork, relief in the form of answers, right there in my hand, relief in the form of a shot for the pain.

I went back to the doctor’s the following Monday, where she looked over my paperwork and confirmed her own suspicions. After months, even years, of going to the doctor for similar symptoms, it took only two visits for a proper diagnosis:

PCOS — Polycystic Ovarian Syndrome — is a common endocrine disorder that affects 5% (or 1 in 10, according to varying reports) of women ranging from teens to those who are pre-menopausal, with most diagnoses occurring in young adulthood. This disorder affects fertility, hormone levels, menstrual cycle, appearance, and the heart and blood vessels; each month, small cysts can appear on the ovaries, causing severe pain.

The birth control pill can help regulate these hormones and control menstrual cycles, preventing cysts from forming, and while little is completely understood about the cause of PCOS, it’s theorized that it may be genetic. Because there is no formal test for PCOS, doctors rely on medical history to rule out other causes of the symptoms.

And unfortunately, that’s wherein the frustration often lies.

I was lucky to have a doctor who really knew what she was talking about, who took the time to understand me as a person, not just as a file, who overlooked the surface and was able to dig deeper. I was lucky enough to have my family take me seriously and put up with my concerns, my moods, my complaining.

I was lucky enough to know my body well enough to realize that something was off, to insist that there was something going on, to recognize that I shouldn’t be feeling the way I’d been feeling.

Now, I wonder if part of the reason why I’ve been so afraid to really live is because I haven’t been really living in the first place.

And you can’t — not when you’re so tired, it’s all you can do to put in a full day at work before coming home to crash; not when you listen to the words that come out of your own mouth and wonder who is saying them; not when you look in the mirror and barely recognize the reflection staring back, not when that reflection barely resembles who you know you are inside.

Not when you become a stranger in your own mind, in your own skin.

When I first met her, my doctor told me that it would be a journey to figure out the cause of these symptoms, to get me back to the happy and healthy girl I remember. But it’s a road I can walk down now because I’m armed with answers, with support — in the form of my friends, my family, this community, and somewhat surprisingly in the form of a dear colleague at my new-old job who understands exactly what I’m going through by her own experiences.

As she asked me how I was doing today, as tears threatened to spring to my eyes yet again, rationality overruled by the irrational as the medication starts to take effect, I tried to offer a small smile, glad to have that support where I might need it most. It will take patience, my mom had comforted me on the phone earlier. It will take time, my colleague reiterated. But soon those good days will outweigh the bad and you‘ll find yourself smiling instead of crying.

In that instant, I realized that life has a funny way of getting you where you need to be, exactly when you need to be there, surrounded by the people that will matter to help you along, show you how to live again, love again, and help you heal. To help you understand that it’s not your fault. To help you get back to who you used to be, who you ought to be…

Who you really are.

19 thoughts on “Never Stop Believing (Part II)”

  1. I think it’s great that you pushed and looked into things. I’m not gonna lie, I was really worried after your last post, and I’m glad you’re okay. Well, okay enough, anyway. I can’t say I fully understand the medical stuff. But it sounds like you’re really using it to drive yourself.

    Thank you for sharing that, Susan. 🙂

  2. Susan, I’m so sorry to hear that you have PCOS. My roommate in college has it and she is/was a lot like you: full of self-awareness and a fierce determination to push through. Thanks for such an insightful and honest post!

  3. Tom: I definitely didn’t mean to scare anyone, but I do appreciate your concern. The medical stuff can be hard to understand, especially when it doesn’t quite affect you, but to put it bluntly:

    Hormones can mess you up. A lot.

    Because I know what I went through — all of the changes, the anxiety and the depression that stemmed from not having answers, from feeling so bad day after day, from wanting to do things and just not having enough energy to do it, I want people to be aware. I learned the greatest lesson from this in that you know yourself best — in any situation. It’s important to trust your intuition, trust what your heart, your mind, your body is telling you. Because only you can hear what they are saying. And you’re responsible for yourself. So you have to take responsibility.

    I hope I’m beginning to do just that — for both awareness and for my own actions.

    I can’t tell you enough how much your friendship means, Tom. You’re always there with a comment or a witty tweet or a “how are you doing.” I love that, it means so much. So thanks for that. And thanks for you.

    Wishing you well.

  4. Colleen: I’m so sorry that your roommate was in that similar situation — in talking with my colleague, my doctor, and doing research I was struck by how common it is and yet how many people don’t know just how affected you can be by something seemingly so simple, at the same time so complex. The emotional aspects are the most scary and difficult to recognize, because it changes you without realizing it is changing you.

    I’m so glad to hear that your roommate was able to know herself well enough, was aware enough, to realize what was going on. I hope that she — and you — are happy and well.

    Thanks so much for your comment and for stopping by!

  5. Susan, I really appreciate your raw honest with these two posts you’ve written.

    I have a few friends who have PCOS and I’ve been with them through their pain and frustration, so I really understand where you’re coming from. Sometimes we just want answers in life to explain how we’re feeling and we want a remedy. I hope to hear more smiles coming your way and that you’re feeling better.

    Keep being strong and courageous, dear 🙂

  6. Oh Susan, I am so sorry/extremely elated for you. As I mentioned when you saw the doctor earlier this month, it is a weird feeling that not many people understand. Being so sick and tired that it becomes just a way of life. Everyone tells you that one day you’ll get back to being yourself, but it’s just impossible to imagine. It’s easy for others to say, they don’t know.

    Pain, aches, fogginess, letting people down, always wondering, never knowing…I could go on. Chronic illnesses for which there are no ribbons just aren’t as sexy.

    I truly hope for much peace and growth now that you know what your battle is and prepare to face it. If you ever need any advice, someone to talk to, anything please let me know!

  7. Dani: As always, I so appreciate your visits, comments, and, most importantly, your support and positive attitude! I think positivity may be infectious, and that’s one thing for which I hope there’s never a cure 😉 Thanks, Dani!

  8. Grace: Thanks so much for your comment…As I said before, I was hesitant to post this because I wondered if it was too personal. But so many people have mentioned having or knowing someone in similar situations — not just with PCOS, but in dealing with similar frustrations. It makes that 5% much more than a number; it makes that 1 in 10 more real.

    Unfortunately, I know that there are things in life for which there are no remedies, that there are thing we can’t control, and frustrations that can’t be abated. But, luckily for your friends and for myself, this is something that can be. Luckily, they, and I, have people like you around to help us out. I think I’ll always be grateful for that.

    Here’s hoping for those smiles… 🙂

    Thanks so much, Grace, always.

  9. Elisa: It’s been a long road full of emails, DMs, and Twitter and blog complaining, and sometimes I can’t believe with all of that that people are still sticking around. Even I got sick of not feeling well! But thanks for being there, Elisa, even for just a simple tweet of acknolwedgement. Even that can go far.

    I think you just hit on one of the hardest points of all of this, what anyone with a chronic illness deals with — you are not yourself. And maybe, too, you’re not really living — not as you should. When you go through the day in a fog, when you wake up and are ready to go back to sleep, when you’re hurting — no matter what kind of pain — that’s no way to live. And you don’t have to live like that. When I heard that phrase said to me, I began crying. Because when you’ve lived like that for so long — fatigue, especially, for years — you wonder how it can be possible, what that’s even like.

    “Chronic illnesses for which there are no ribbons just aren’t as sexy.”

    This is true enough, but even those with ribbons are sadly rarely understood. I admit it’s hard to imagine. Just like someone can’t imagine what it’s like to wake up and an hour later need to take a nap (though I joke about my love of naps, I actually really need them), I can’t imagine what it’s like to sometimes have enough energy to get through a day. And you feel like you’re letting people down because you *should* be able to, but you just can’t.

    I know by your comment that you completely get that, Elisa, and I can’t tell you how much I appreciate this. That kind of support and understanding is what can carry us far. You can bet I’ll be asking for that advice, but even more, thanks for that friendship.

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