Midnight Musing – Click

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I’ve never had so many things go right in my life all at the same time. It’s a truly amazing feeling.

My boyfriend and I (that is, my boyfriend of 9 months) are getting along better than we ever have. This past weekend we went camping, and it was awesome to be able to spend so much time with him and to grow closer in our relationship. I’m truly blessed to have such a wonderful man in my life, and honored as well.

My culinary career is in full swing, and I’m excited about the possibilities that are coming my way with the company that I’m working with. I received the best compliment from a fellow chef that can’t be topped – he was tasting my signature dessert, a lemon bar with lavender shortbread crust, and he told me that years ago he used to work with a pastry chef who was big into shortbread, but that mine was better.

Not 45 minutes before that I sat in on a menu tasting and the Tiramisu that’d I’d made on the fly was attacked by the tasters and the owners of the company, and I was told that it was spot on. I’m still astounded because I’d make so many alterations to the classic that while it looked like a Tiramisu, and had the basic components, Italian chefs would have been horrified by my changes.

I’d made a mini chocolate cake as well that was, as I was told, fabulous. It too was devoured by the chef who complimented my shortbread, and the tasting guests as well. There was an impromptu birthday celebration that the remaining cakes were used for and I, at one point in the early evening – while talking with the chef, heard my name being mentioned for and moments later I heard an applause over the noisy room.

I’m so blessed to be surrounded by those I love and those who love me, and humbled by my career which I thought that because of my disease was at an end.

I’m living proof that there is no obstacle large enough that with time, patience, and true devotion cannot be overcome.

… and the journey continues.

Weak

It never ceases to amaze me how many people refuse to acknowledge that the seats in the front of a MUNI train or bus are for elderly and disabled, not their sweet innocent children who are capable of standing or at the very least, being held.

The other afternoon as I was coming home on the N Judah train, which was packed, I held out my transit card which clearly indicates that I am disabled and asked if the little girl sitting in one of the seats reserved for the aforementioned populous could give up her seat. Her mother turned on me like a dog, ‘You mean you want the little girl to stand rather than sit?!’ It’s not as though I were asking that she be taken off the train and left on the sidewalk, come on now.

I said in reply that yes, that was in fact what I was asking, and that I had a disability and that the seats were specifically to be made available for people such as me. The woman looked at me as though I had suddenly grown another head. Luckily there is still a bit of human decency left among people and an older gentleman got up and offered his seat to me. I thanked him profusely as I struggled to seat myself, and said to the woman, that if someday her daughter gets Parkinson’s I hope she understands what it’s like. While my quip was a bit harsh I was in no mood for the belittling that I was receiving. The girl’s father jumped in with some strange comment about showering which still leaves me baffled, as it had no relevance. I know he was speaking to me because he was looking straight at me.

Regardless of him, the woman should know better. Yet, in that same breath, I can understand why she wanted the little lady to sit, however when someone politely requests the seat, in my opinion, the request should be granted without question to those who require the seats.

Parkinson’s is no joke. It’s not a kind disease, it’s cruel and torturous some days. More and more people I’m finding are wont to grant me the health that most people my age have, but looks can be deceiving. I may look healthy, but the reality is that I’m not. My body is deteriorating and as much as I may claim not to pay much attention to my Parkinson’s because I’m living my life as I want my life to be lived, I do pay it more attention that is necessary some days.

Over the weekend I was invited to a concert at the Shoreline. I declined the invitation the morning of because I wasn’t feeling my best, however I also declined because I knew I wasn’t up to the physical demands of the day. There are just some things that I really cannot do, and while I accept this fact it’s still hard. Especially when my boyfriend sends me texts telling me that Cold Play is about to take the stage.

I’m jaded I suppose. I’ve learned to ignore the looks, the stares, and the comments that come with the effects of the disease. My loving boyfriend however, is not. On Friday evening I was at an event and was in front of a group of people, my disease more pronounced than I was used to because of a draining week prior, and my man told me the next night that he hated to see me that way and that he felt bad for me because of all of the judgments that were being passed towards me. I’ve never really wanted to cry more than I did in that moment.

To hear someone you love and who loves you tell you that they felt bad for you because of something that’s out of your control is akin to being told of my diagnosis all over again.

Am I not taking care of myself adequately? Can I do anything more than I do already? What can I do so that he never has to see me like that again?

I don’t think there’s any answer to those questions. It is what it is, and he knows that. As do I. We just have to take the days as the come, be they pain filled, or carefree.

 

And the journey continues.

Something I Never Thought I’d Write

I’ve overcome many things in my life, I’ve been through things that people my age don’t normally encounter, and I’ve fallen in and out of love enough times to know that it hurts but it’s worth it.

However, nothing could have prepared me for last Friday night. Or, consequently, this week.

Last Friday night I was lucky enough to survive a very bad house fire. I fell asleep beside my boyfriend, in his home, and shortly before three am he woke to the sound of a roaring fire taking over his kitchen.

The details are still haunting me, things that I will never, as long as I live, be able to forget; sights, sounds, smells, all nightmarish in thought but living hell in reality. For your sake I will hold back the details that you don’t need to imagine. Mostly because I’ve locked them in a Pandora’s box in my mind and am trying my very best to forget and move on. But it’s not that easy. As a result of the fire I have Post Traumatic Stress Disorder. To give you an example, I’m terrified to turn on my oven and am getting better about being so paranoid about whether or not I’ve really turned off the stove top, despite the fact that I just turned it off two seconds ago, or that it was off the last three times I set down the food that I’d made to go and check. I’ve even unplugged my toaster oven because if it can heat up, right now I’m scared of it. And watching Backdraft is completely out of the question. So is pizza for now, that’s what I’d had for dinner that night, a frozen pizza that my boyfriend had made – and yes, he turned off the oven.

Some of you may scoff, and scoff all you want, you didn’t see and hear what I did, you don’t know the memories that come back and haunt me nightly. Hopefully you don’t anyway.

If you’ve ever been in a house fire then you know the scent memory that’s associated with it. Every time you get the faintest whiff of something, anything, that even faintly resembles smoke or burnt wood you’re immediately thrown back to the original event. Just now, while writing this I got that faint whiff of wood smoldering. There it is again too.

But it does put everything into perspective, life, love, the reality of the finality of death, and the appreciation you feel for being able to sit in the sunshine. Little things mean so much more suddenly.
I am thankful for so many things about that night, the greatest of which is that everyone who was in the house made it out alive.
I didn’t want to write this post but I needed to, for the sake of closure. It’s as ugly to write as the sight of the charred remains of the kitchen where the fire was, and there’s not much left, and it’s just as catastrophic to remember as it was to go through.

Wishing you all the very best, and hoping that you have loved ones to hug tight after reading, which is what I’m going to do as soon as posting is complete.

Finding The One

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I always wondered how people knew that they’d found ‘the one’ – that one person with whom they were able to share a lifetime with. Then I was diagnosed with Parkinson’s disease.

Receiving that diagnosis at such an early age – relatively and comparatively speaking – I began to wonder if I might not be able to find someone who would want to share a lifetime with me, and my disease.

I dated a few different guys before I finally found the man who has had my heart for three (almost four) months now. We’ve had our ups and downs like every couple, however there’s one thing that he accepts, never questions or doubts, and even supports me through and that’s my Parkinson’s.

I wrote a post about a year or so ago entitled ‘For Better or Worse’. In that post I talked about the vows that a couple pledge to each other on their wedding day – one line in particular – ‘through sickness and health’ – it’s a hefty promise that no one really gives credence to on the day. No one expects their partner to get sick, no one expects their partner to suddenly not be the same one day. So, in that respect it’s kind of big promise.

But for me, he knows I’m sick, and there’s never a doubt in my mind that he loves me regardless. I know that when he kisses me goodbye in the morning before he goes to work and tells me that he loves me, I know that it’s all of me that he loves, and that includes the Parkinson’s. There aren’t words to describe how happy he makes me, and I know that he will continue to do so for a long, long time.

… and the journey continues – in sickness and in health.

Midnight Musings – These Broken Wings

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I’ve never written a post about the day I received my diagnosis. Perhaps though, that may be because I had a reaction that many people wouldn’t have had. On March 10, 2011 I had an appointment at UCSF’s Parnassus campus with a doctor named Chad, and I am eternally grateful to him and to my neurologist Sarah. Doctor Sarah pulled the strings for my appointment at UCSF, and brought in a man who within one half hour visit did what no one else could do for five years.

I’ll never forget that appointment.

I arrived at the neurology department anxious and yet somewhat hopeful. Doctor Sarah called me into the little room where I sat and talked with her briefly about the new symptoms that I was experiencing and then she excused herself to go tell the doctor with whom I was meeting that I was ready. She had left the door to the exam room open and I sat in a chair by the door eagerly awaiting this mystery man.

Within minutes I heard them talking in the corridor, and the words that I heard I can still hear as though they were spoken this very afternoon.

‘Tell me more about this patient.’ I heard a man say as the two approached slowly.

‘No. I want you to see this young woman with a fresh pair of eyes. She’s been seeing doctors for five years and hasn’t been able to get a diagnosis to fit all of her symptoms.’ My heart stopped for a moment when I heard Doctor Sarah say these words. I was suddenly filled with a newfound hope that I hadn’t known in quite a long time.

‘Ok.’ The male doctor said. The two came in and the man introduced himself to me as Doctor Christine. (Dr. Chad Christine that is.) I sat in my chair and performed the tests that by now I had down pat. He told me to stand and walk into the hallway and walk down a long corridor and then walk back. I did and was ushered to a table where I sat and was asked to lay back. Doing so I suddenly felt exposed, not in the sense that I was showing any parts of my body per say but because I could feel my symptoms. The tremor was, by this point in time, nearly unbearable.

He continued to perform examinations, and then a few minutes later he told me to sit on the edge of the table and performed two more tests. Then, pulling his rolling stool a little closer he took my hands in his and looked into my eyes and spoke words that I’d, in a sense, been waiting for what seemed like an eternity to hear.

‘It’s very rare for someone your age to have this, but I think that you have Early Onset Parkinson’s disease.’ I was rendered speechless, and managed to say simply, ‘Ok.’

 

We talked for a few more moments before he stood and consulted with Doctor Sarah about the proper prescription for me, and then, after saying good-bye, he left.

Doctor Sarah turned and gave me a look that was slightly concerned.

‘Are you okay with the diagnosis?’

‘Yeah.’ I said with a touch of a smile. ‘I’m actually relieved to finally have a name for what I’ve been going through.’

After talking about the prescription that I would be picking up she and I parted. I promptly called my grandma and asked her if she could take an early lunch break.

We met at Mount Zion Hospital and sat in the cafeteria where she read to me the textbook definition of Parkinson’s disease from a medical book she keeps in her office. I couldn’t believe what I was hearing. I had the literal definition of the disease. How could it be? How could so many doctors have missed it? How could they have let me go for so long without telling me that there was a possibility that I had such a thing? Then it dawned on me… I was 26. Perhaps, because I was so young they were hesitant to diagnose someone with such a life altering thing.

Fast forward to the present day.

I recently downloaded a song from iTunes that I harken to my life after my diagnosis. The song is called, Blackbird and a portion of the lyrics are so parallel to the way that I feel even now.

 

 

Blackbird singing in the dead of night

Take these broken wings and learn to fly

 

All your life,

You were only waiting for this moment to arise

 

 

… and the journey continues.

A New Door

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This Wednesday I have an appointment with a doctor regarding my disability claim. I can’t even begin to tell you all how nervous I am about this meeting. Having been denied once I’m worried that I’ll be judged by my age.

Knowing what the appointment will entail I’m finding myself becoming more and more worried that because I know a Neurological exam inside and out I’ll be too focused on what will be asked of me and not as in tune with myself. I’m not concerned that the symptoms I exhibit won’t be seen, because I know that they will be.

What concerns me most about these appointments is that they are a standard 15 minute battery of standard routine tests to establish a disease that there are no tests for. To say that I’ve been pushed around through the medical system is an understatement. After all, it took 5 years of fighting to receive a diagnosis. It took relentless hounding of my doctors to get the tests that I needed to establish that I wasn’t lying about what I was living through, that I didn’t just have an essential tremor… even thinking about all these things now three years after my diagnosis worries me. My doctors know that I’m diseased, but will the State of California know it?

I can only pray that they see it, believe it, and acknowledge it.

… and the journey continues.

Love love love

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It’s not always glamorous, it’s not always easy, sometimes there are disagreements, fights, and yes occasionally tears. But in the end, it’s heaven and it’s worth the disagreements, the fights, and even the tears. Knowing that you’ve found that one person with whom you’d rather fight with just to get that make up kiss (and the things that follow are great too) but that hug – the enfolding, consuming, filled with blinding passion hug and kiss when you can both acknowledge mistakes were made makes everything you put each other through worthwhile.

I thought I’d found love quite a few times, I’d made myself miserable in states of so called love, I’ve been made miserable by the men with whom I’d convinced myself that I was in love with. But love should never hurt like that. Love should never cause the anguish and pain that we as women think we need to suffer through just to keep that man. I can only say this about those ‘men’, they’re wolves. Praying on our emotions, feeding off our insecurities, and yes, even using those insecurities to expose our weaknesses like a sheet that’s been ripped off of a bed.

But, I digress.

Every girl and woman longs to hear those three little words, we dream about hearing them, we yearn and long to hear them. But nothing is comparable to hearing them for the first time. Whether it’s the first time ever or the first time in a new relationship, it’s an incomparable moment in life.
There’s a trite saying that comes to mind but it holds true, life isn’t measured by the breaths you take, it’s measured by the moments that take your breath away – however I’m wondering right now if in the saying life shouldn’t be replaced by love. It kinda works, and it kinda doesn’t…

Then again –

We all remember the playground taunt, so-and-so and fill-in-the-blank k-i-s-s-i-n-g, first comes love, then comes marriage, then comes the baby in the baby carriage.

A commercial I saw the other day brought that to mind. Their advertisement read first comes love.

But what happens when the first love doesn’t work out? The first marriage? Granted, when that little rhyme started a second love was unimaginable, and God forbid a second marriage (divorce still is considered a sin). And dare I bring up Secondhand Rose? What’s so wrong with second chances?

Speaking as someone who is dating a divorcee with two of the cutest little boys that I’ve ever seen (in pictures, we’ve never met, yet)… I’m proud to say that there’s a chance for love after life throws you a curveball, and vice versa – I know firsthand of love’s curveballs… and boy do those hurt.

Regardless though, in this day and age there’s still a stigma surrounding second marriages, and second chances. Love is between the two people involved, no one else should have a valid opinion in the relationship – in my opinion. Afterall, the two in love are or at least should be responsible enough to make their own decisions about their lives. Right?

Love is love, and personally speaking – it’s lovely.

Love is patient, love is kind… you know the rest – and if you don’t look up Corinthians.

… and the journey continues!

Should auld acquaintance be forgot…

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As 2013 winds down and 2014 comes into focus I find myself looking back at what this past year has brought me.

Through some tumultuous months, I have had experiences both good and bad. I’ve made new friends, made new enemies, had some good boyfriends and some bad.

I’ve found and lost myself time and time again, and as I sit here on my bed I’m discovering I knew little about myself at the start of 2013.

I ran 2 5ks this year. Didn’t know I had that in me. Let go of the emotions I was clinging to for a good part of the beginning of the year, didn’t think I’d ever get over that. I made some claims to having found love, but realized it was just lust. Then lo, I actually found it. Didn’t think it would ever really happen.

I also realized (last night in fact) that taking the high road would mean taking a few personal attacks by people who are less comfortable with acceptance than I am.

I don’t like much of what happened within the last year, but in the same breath I cannot deny that what happened just happened. Acceptance means acknowledging your mistakes and bearing the brunt of the consequences.

I’m stronger because of the past year, mentally, physically, emotionally, and am ready for whatever 2014 may bring me, so I say to the new year – bring it.

May you all have a safe and happy New Year, and may you all be blessed with greatness.

Midnight Musings – The Insomniac is Back

Yes, it’s true. I’m back. But for a reason I’m ashamed to admit… I screwed up my relationship.

So, it’s been a while since my last post… However this post is about a different guy, a new guy. A guy I am admittedly head over heels for.

 
He’s 38, the youngest guy I’ve ever been with true, but also the one whom I don’t want to get away.

 
What is it about admitting faults and screw ups that is so damned difficult?
It’s hard enough for me to settle down, but it’s harder for me to admit to my own faults and failings.

 
I’m up tonight because I can’t sleep, why, you may be asking. Simple. Because I’ve gotten used to feeling my fella cuddle up to me when we get ready to fall asleep… tonight more than ever I miss feeling his breath on the back of my neck, his arm around my waist, his hand covering mine, and his gentle kiss on my shoulder. But perhaps I shouldn’t. Let me explain why.

 
He and I agreed that we’d take things slowly, and day by day, and that we’d take these things together, but I guess I got carried away and jumped in head first.
He asked for space tonight and while I believe that he could have asked for it in a better way, I felt crushed for a few hours… and it’s just now that I’m realizing that it’s me who is in the wrong, not him.

 
Now it seems that I need to tuck in and eat my crow. However, I’m smart enough to know that I need to give him the space requested for a few days at least before I taste said crow. Figures, the girl who loves slow cooking gets to eat a slow roasted crow. I hate crow. It not one of my favorite flavors – but I need to eat this one…

 

Anyone have any ketchup?

 

 

… and the journey continues.

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