Tuesday, December 20, 2016

Starting life over with your new normal.

They talk of people starting their lives over. They need a fresh start. Maybe something tragic has happened and they have to pick up the pieces around them and carry on.
But how exactly do they accomplish that? What does it take to look around you, realize some things are simply never going to change and to be okay with that and simply carry on?
I’ve been stuck in a place of wanting to move forward but not knowing how. I am fully aware that my life is not going to be what I planned it to be. I had my goals and I achieved many of them. But then my circumstances changed, my health shattered and since then I’ve been stuck surrounded by those pieces of glass too afraid that if I moved forward I would get hurt. Too afraid that the tiny pieces of glass would get stuck forever if I tried to escape them. What does that even mean? I was stagnant. Totally and completely frozen. Stuck in frustration over the wife that I couldn’t be, the mommy that I struggled to be and the constant longing to be the friend to someone I knew I could be, even if that meant crashing their house just to lay on their couch, but to be there nonetheless.
One day I realized my surroundings, the home I worked so hard to make a peaceful and healing haven, yes those very four walls were closing in on me. I was stuck behind the curtains. It was a wake up, do your best, struggle through the day, rinse and repeat cycle of surviving. Because of the chronic and endless illness I put all my energies into surviving, not living. And just surviving was getting draining, it was getting old.  So how do you start over when you are not sure where you are starting from? How do you start life over, with your new normal, finally accepting that as so? This is something that has been heavy on my mind. As my dark days turned into dark nights, simply surviving was becoming difficult. I had to find a way out of the shattered glass I was surrounded by.
I know I’m not alone. I know you’re out there reading this feeling exactly the same way. 
So what now? Where do we go from here?

Make a plan. Think about what you want in life. I mean really think about it.  You might not be able to do what you did before, so think about what you can do now. Stop living in the past of what you planned, wanted, or thought you should be doing. Start living in the now- taking in what you can do in this moment. Can you get out of your four walls and do even a little bit of what you’ve wanted to? Cause a little bit is better than none and that is something I am trying to come to terms with right now. I thought if I couldn’t engage in my volunteer work on a full time level then the little bit I could do was simply not enough. But the only person it wasn’t enough for was me. The only person in the way of me doing a little bit of what I loved, was me. There will always be laundry, chores, errands, bills, and unfortunately it appears there will always be this chronic illness in this present life. So how can I live a life I love within those circumstances? 

Instead of always comparing my healthy life and my healthy goals to what life is now, I needed to make new goals and plans within my present circumstances. Maybe I can’t be the play-date-every-hour-is-planned-out-with-activities-mom, the full-time volunteer, the shop till you drop girlfriend or the wife that never has to bail on plans for a date with her husband cause she is just too exhausted to function. I had to let those thoughts go once and for all.
Suddenly I realized instead of trying to find a way out of the shattered glass I needed to clean it up. Get out the broom and risk a few pieces getting stuck in my feet cause that is better than being forever stuck. But it wouldn’t be easy, it would be a slow steady process. But one step forward was better than no steps at all.
So with that being said, when you are too tired to even function how do you live a life that is not just surviving? Stop just surviving then. Just do it. Find a way out of the survival mode you’ve created for yourself. 
Yeah, there will still be plenty of days that 
surviving is all we can do. Days the pain is going to hurt so bad we will still look back to the past and long for what was before. That can’t be avoided and that is okay. Sometimes our body will trump our mind, it will demand we go back into survival mode to just get to the next day.
But on the days that life is lighter, enjoy it however possible. Live it, breathe it, take it all in. A cup of coffee, a quick trip to your favorite store, find a way to make friends that will accept you for you and won’t be wanting more than you can give. It might take time for this to happen. It might take a lot of strength on your part. To put yourself out there again, to figure out who you are again, to realize that your maybe not-so-new circumstances may not be going away (for now) so try to grow within them.

Stop hiding your sparkle behind the curtains. 

Let it shine. Let it out.

Monday, December 5, 2016

Hope remains.

There have been times in life when I have felt true disappointment. Over and over again I sought out answers, direction and proof that what I was physically feeling was not a cry for help mentally. Over and over again I was left without answers, without direction and told to seek out a social worker. Even the doctor who was finally able to tell me there was “something auto-immune” going on would  refer to me as "mild" and the disease likely to "go away" despite me telling him how much my life has been affected and how much pain I am in. Maybe he felt his hands were tied. He wasn’t a bad doctor, but I think sometimes doctors get to a point where they feel they can’t go any further with a patient and so they don’t-even-try

Let me start 9 years ago. 9 years this month I felt a flu like pain come over me. I laid on my living room floor trying to find a position in which my body did not hurt. It was impossible. As I envisioned my body being taken over by the flu I thought this is temporary at least. Little did I know that night filled pain was an indication that my life was forever changed.
Doctor after doctor told me they could not find anything wrong with me. I looked good, I was young. “Go live your life. You have palpitations and a high pulse? Must be your hormones- you are a female after all. You have body aches? It must be fibromyalgia. You have stomach pain? Okay, you must have IBS.”

Some doctors went as far as to say to me I have "had WAY too many pointless hospital tests done for my age. Why was I having so many tests done?" Again and again I was told to "Go live my life."  
You see, the thing is, I was trying to. I wasn't asking for tests. I was asking for answers, I was asking for help. Each door I tried was slammed shut. I knew inside there was more to be found. I was determined to find it. But the road to answers was exhausting and wearing on my heart. I started to wonder if I was making it all up. If the pain, weakness and unending exhaustion I was feeling was just normal for this stage in life. But with the help of some very special people I was encouraged to keep searching, keep fighting for answers. But this time go big or go home.

 So I did & was accepted into Johns Hopkins Rheumatology department.  At first it appeared about the same. Same diagnosis. Same treatment. But a million tests to follow. And at first the results of those tests came in the same way too, all relatively "normal". 

Then it was time for the colonoscopy. The Dr said everything looked good. Of course it did,  I said. Why would anything ever back up how I'm feeling. 
Then a day later the biopsies from the colonoscopy were in. 
I pulled up the results on my tablet almost callus like expecting yet again, no answers. When I read the results I felt something inside I think was disbelief. It showed something?  I must be reading this wrong. I read it again. Collagenous colitis. Well there's something new,  a diagnosis I had never even heard of. 

I took this info with me to my next appointment with Hopkins. 
They haven't had a patient with that condition in years,  many years. 
Then came reviewing the blood work which all came in negative,  with one very big exception.  I have unknown,  unidentified auto antibodies. 

Um, what? 

Antibodies against my body that they have not yet given a name.
No one knows what it means. 
This is why no one could give me answers. 
All the years of nasty, cold and jaded doctors went rushing through my head. 
All the times I left long awaited appointments with such a feeling of sheer disappointment suddenly now all made sense. 
Even my doctor from Hopkins who already knew what I had was real and obvious from prior blood work said that for me, this must finally bring me a level of comfort.
Comfort yes. Comfort in knowing what my body was trying to tell me and then me trying to tell the world was right all along. It was not in my head. It was not a cry for help or an attempt for attention. It is all very real. A mystery still, which stings a little bit, but real nonetheless.

Now this leaves us still in a very big bucket of the unknown. 
They're unsure that the collagenous colitis is the total culprit for all my stomach issues, so they've already set me up to have a new highly sensitive 4 day stomach test to be done this month and to maybe meet with their GI specialists who have an special interest in people like me, a mystery. 

And so we wait. Wait for research to catch up with my body. Wait for someone to figure out what these antibodies really mean. But until then, they have talked of a monthly infusion therapy that insurance of course won't want to pay for, but its an option they are prepared to fight for. But at least there is now talk of treatment and an attempt to get me feeling less like I'm surviving the day and more like I'm living it once again. 
And if it doesn't happen, which she strongly thinks insurance will deny, 
my hope still runs deeper and further than what today's medicine can bring. 

Sunday, November 20, 2016

Not replaceable.

Three people. There have been three people that have come in and gone out of my life teaching me that suicide is not just a word or a tragic event that happens to someone else. Just last night I heard of another friend who succumbed to the bitter sadness of depression.
As a teenager I stopped a friend from ending her life despite the fact that we were 4 states away from each other. She thought I couldn’t stop her by the point she reached out to me. I thought otherwise and began begging 911 dispatchers to believe me. The cops were eventually sent to her house and she was taken immediately to the hospital where she was saved.
As a young newly married adult, I had made friends with someone in our ministry work who struggled deeply with dark depression and many times I arrived at her house she told me, she felt I was sent there for a reason. But after some attempts of not finding her home, my husband called me on the phone one day to tell me sweet Sherrie had passed away after her long fight with depression. I didn’t believe him. I can still hear her voice. I can still remember the odd little stories she would tell me. But mostly her voice echoes in my mind even many years later. I can't drive past her old apartment without a subtle sadness taking me over. 
And finally I woke today to a sick pit in my stomach. Hoping the news I heard last night was just a bad dream. But today it is so very real. My numb state has slowly broken down into tears and acceptance yet it's something I am fighting to accept.
A sweet gentle soul reached out to me at a moment I was struggling. Feeling totally defeated by chronic illness, this gentle soul wanted me to feel supported and simply good enough. She knew the pain I was feeling and was motivated to reach out – knowing that pain herself. She had reached out to many, many others, filling their lives with laughter and sparkle. If only I could have helped her during her darkest hour. If only. 

Please don't ever think that suicide isn't real, that it can't happen to anyone you know or love. They are hurting a hurt that cannot be put into words.
So reach out to that person you know may be struggling. Offer a hand, or a hug, or just some kind words. You never know who you might help by being a little bit kinder. You never know the battle some are quietly fighting.

You’ll never be forgotten sweet JA. You taught me no matter how much I am struggling inside to try to be the bright light for someone else. Thank you for that.
I may not be the most affectionate person you know, but I promise if you need to talk even in your darkest moment I won't judge. I've felt the feelings no one ever wants to admit.
You aren't ever alone. 

Friday, October 7, 2016

I don't want you to wear my shoes.

As a child we imagine how our life will be when we grow up. We have our visions, dreams, hopes, and goals. We are determined to make something of ourselves. Determined to not let the ugly parts of life’s experiences stifle us. Determined to be more than the scars on our skin. Determined to be bigger than our fears. But then sometimes life happens in a way we weren’t prepared to handle. Whether it happened at such a young age that you really can’t ever get over it, or as you grew you faced different experiences that shaped your inner person. These experiences may have shaped you for good as you were determined to not repeat the cycle. But there are some experiences that no matter how far you think you’ve run away from them, you turn around to see the shadows of the past lurking right behind you.  Sometimes you’ve been so strong for so long that when you finally let your guard down to the raw and real emotions that you’ve ignored for so long, you find yourself completely weak and now shaken by the reality of what life has done to you. Suddenly you don’t recognize yourself anymore. What happened to the person you fought for years to be? No one told you facing your demons head on would be so hard.That’s because they aren’t their demon’s. They simply don’t know how it feels.  

There are those that think they have the slightest understanding of how you feel. They imagine themselves in your shoes and they could do it better. They would be stronger, they wouldn’t break. But they don’t feel your frayed edges coming undone. They wouldn’t complain, but they don’t know how long you’ve been silently strong for. They only see the outside that you’ve allowed them to see when there is so much more below the surface that they can’t see. They have no idea how long you’ve suppressed these emotions leaving you numb for half your life. Now that you’ve decided to feel all the feels you’ve been shaken to your core. No they can’t understand it, its not their emotions to feel. Whatever happened to you is your experience alone and until it happens to them, they won’t ever understand it and you have to be okay with that. Look away, refocus your thoughts, take a break, take a deep breath, whatever you have to do be okay with others not getting it. 

Whether you are struggling with emotional anguish, mental illness, chronic illness, or trying to heal from trauma of the past, if they aren’t wearing your shoes they aren’t going to understand the blisters those shoes have caused. And you don’t want them to feel the pain from those same blisters, so its really okay that they aren’t in your shoes. Their shoes are probably tight enough and you just can’t see it.  As I’ve walked along this road showing my bruises from the past, I have come to learn that even I can’t understand what someone else’ pain is like. I thought I could relate to them on a level not many could. But in the end, their pain is theirs alone and not mine. I can try with all my might to understand how they feel, but in the end I may only understand a fraction of how they feel.And even if I think their situation is worse than mine, or vice versa, really what does that even mean? It means nothing. It means my pain hurts just as bad as their pain hurts them. In the end, instead of comparing our pain and experiences in life as worse or better than one another, why not put that aside and just be there for each other?

The last few weeks have proved to be eye opening to me in ways that words cannot properly describe. I thought emotional pain would break me. I questioned how would it be possible for me to continue to be strong enough for someone else? I nearly cracked. I envisioned my body like a weak tree that’s died from a harsh winter. How much force could I withstand before I fell to pieces? I shed more tears behind closed doors than anyone could possibly know. Then I realized my pain will always be there until it isn’t anymore. So until then, I will have to feel it. Embrace it. Accept it.   But I will put it aside for the needs of others when they need me. And when they don’t need me anymore I’ll allow myself to feel what I need to at that point. But I am not perfect and I am going to waiver. I may crumble despite my good intentions. So if that happens I hope you will just support me, love me, guide me. Not judge me. Not tell me I need to be stronger, as I’ve been so strong for so long. If I have given all I have left, don’t assume you would have more. I’m not selfish if I’ve poured myself empty and can’t pour anymore out.

 No, I don’t want you to wear my shoes. Lets just find a way to stop judging, put assumptions aside and simply be there for one another.

Wednesday, September 21, 2016

When hope clashes with fear of disappointment.

Dear Ashley:

I write this to you as we are now only six days away from the very anticipated and long awaited for appointment at Johns Hopkins. I know you are scared. I know all the feelings that are running through your mind as you’ve experienced them so many times before.

You’ve been sick for approximately eight years and nine months now. That’s 452 weeks of wondering and 3,164 days of waking up hoping the pain that riddled my body the day before would finally be gone for good. Pain that is supposed to be your friend, one just passing through sounding an alarm that something is wrong, has overstayed its welcome. No one has been able to make it leave and no one can figure out why it has even decided to stay. Eighteen doctors and countless tests revealed only more questions. More confusion. More wondering.

And this appointment coming up has you walking down memory lane. All the times you heard: “You look fine,” “Go live your life” or the alternative that I’ve also heard many times: “There is definitely something wrong with you. Just what, we don’t know,” “You need Doctor House” or “This came back abnormal. But we don’t know why.” One doctor led to another, which led to more questions.

But a few years ago, you decided to take it on yourself to be your own advocate for your health. Can you remember how far that got you? You decided once and for all your doctor’s lack of answers and glossing over everything was enough. This took you across three states, with each doctor filling in a piece of the puzzle. At the time you still felt a bit hopeless, but in their own little way they provided direction that eventually got you to where you are today — diagnosed with undifferentiated connective tissue disease — which basically means you have autoimmune disease, but not defined.

The last couple of years you were happy with that diagnosis. That was enough for you; it proved to everyone what you had said all along about yourself. There was something wrong and it was deeper than the doctors wanted to see.

But as time has passed, new procedures and tests have been done. More questions are being raised. Fears are growing, new issues are rising and more questions are remaining unanswered. It was time to start your journey again.

But with that comes feelings bubbling up that I’ve tried to push down for two months consisting of questions like, “What if they don’t help me?” “What if they can’t give me an answer either?” “What if I’ve hoped about this for nothing?”

For all those facing the same, I write this to you as I write it to myself:

You might not get answers. They might not help you. The best of the best might let you down. And it might hurt; in fact it might hurt really bad. It might make you feel like giving up. But don’t. Please don’t. You know yourself that you need answers and it is not in your head. It is very real. And if you don’t give up, then one day you’ll get your answers. It might take eight years, it might take longer. But one day you’ll get them.

Stay strong for your family or for your children who might end up just like you. If you get answers, they might get them, too. Stay strong for the ones who don’t understand what you are fighting so hard for, so if it ever happens to them, you can urge them to never stop either until they have answers.

And stay strong for you. Remember that one doctor might not solve your mystery. They might only discover a clue. Remember each clue is a step forward. Each piece will help solve the puzzle eventually. Just stay strong so you can get there, so you can see the puzzle completed.

And until you do, it’s OK to cry. It’s OK to feel broken. Just don’t give up.

Pick yourself up after you’ve let it all out and start over again.

Thursday, September 8, 2016


As I sit and reflect on last year, my heart sinks into a place that doesn't feel right.
I didn't realize how broken I was until I started to heal a bit.
Sadness was thick in my soul and a feeling of dread took it over for a time being.
My hopes, my faith, my thoughts of the future were all being tested at once. 
While I traveled down this lonely road I had silently hoped there would be a friend who would reach their hand out to me before I fell off the cliff.
Friends that use to be there, were now gone.
And yes- some tried, but they really had no idea how desperate and how close to drowning I was.
My husband tried with all his might but there was a hole he couldn't fix.
Loneliness existed on a level I had never experienced or thought possible when still surrounded by people and family that loves me.

Being sick makes you lonely cause you can't keep up with the average person.
Being lonely makes you sad.
Being sad makes you not want to be around other people, especially people who seemed happy and content in life. I was stuck on a hamster wheel.
I couldn't fake it anymore. And I stopped trying. I stopped faking it. I am not sure how I must have seemed to others, if I still had a smile on my face it certainly took an effort to have it there. But I'm fairly certain that the smile was gone. I stopped answering when people asked me how I was. What would I say: "I'm dying inside, can you fix me?" So I would just pretend I hadn't heard the question or nod and smile and quickly try to escape.

I had nearly drowned in feelings of worthlessness and discouragement.
And I am still battling those feelings each and every day. Its days like today when the busyness stops and quiet takes over and there is too much time to stop and feel. That's when I start to struggle.
I miss the past. I miss the days when I didn't feel so lonely, so sick, so limited. So when I have a moment to breathe that isn't filled with something I am supposed to do or when I am no longer running on adrenaline, I start to think, I start to feel.
I often think I am not enough somehow, not good enough, smart enough, spiritual enough, strong enough, brave enough. Not a good enough mother, wife, and especially not a good friend. My friends have dropped like flies through the years, often making me think I had done something terribly wrong.
When my kids dote on me with hugs and kisses and my husband exclaims his affections for me I have at times questioned: "Why?"
It's amazing how negative feelings can alter your visions altogether. It is amazing how sickness wears you down to the point of no longer recognizing yourself.
But my reflections has me determined to start anew. I am not to blame for other people's choices and I am no longer going to bear that guilt. I cannot help the sickness that has attacked my body. It is not my fault.
I am determined to stop thinking that I am not enough. Physically sick or not, I am enough.

And I am not alone.
I wish I was, but the reality is I am just a tiny fraction of those hurting. There are too many in this world that struggle with the same self-doubt due to one reason or another.
But the same people I see struggling with those feelings are people that I think are beautiful, inspiring and more than enough. In fact I wonder where they initially started to think otherwise.
 At what point in life did it beat us up enough for us to think we are no good? Maybe it was when we made some mistakes. We realized where we went wrong and struggled to turn it around. Maybe we had someone let us down and that made us question our worth. Maybe we never had people tell us how precious we are. Maybe for those who are sick, it was because we had used up all our energies just surviving so we had nothing left to use on activities that are important to us.
Maybe it was nothing. 
Whether it was something or nothing they are hurting and I 'get' it. This big hugely populated earth is filled with gentle souls that are counting the days as they pass by. Not totally sure what they are accomplishing besides using up earths air supply. Their broken hearts are hidden by big beautiful smiles not wanting to burden anyone with their sadness. But perhaps if we all shared our feelings a little more freely, we wouldn't get to the place of such despair.  At least in my reflective state I have to wonder if that's helped pull me out of the darkness. Finally letting it all out. Not relying on just myself anymore because my shoulders were not that strong and they finally gave out on me.
 I'm not saying the dark clouds have lifted and I am left with blue skies and a rainbow to boot. I am saying, I can see the sky again a little bit. A bit of blue is peeking through. I'm not suffocating anymore, the air isn't so thick. My hope has returned. 
But if I shift a little to the left, or a little to the right, the rain starts to pour down on me soaking every bit of my soul. So it takes focus to stay steady, effort to control these negative feelings or thoughts.
And as strong as those feelings are, with the right help I will be stronger. 
And so can you. 

Thursday, August 4, 2016

Braving new beginnings.

Today I came to the painful realization that some things will never change. I've been holding my breath for so long hoping the things the I've come so accustomed to would magically change for the good. I have been so wrong for so long. I have grown breathless. I can no longer keep up this internal battle.

Which means, I have to stop waiting and finally start living. I've felt trapped for so so long.

Trapped in a place that causes hurt and pain.

Trapped in a town that feels broken.

Trapped between suffering and stubbornness.
Trapped between what my heart wants to do and what my body says I can do.
Trapped between a desire to spread my wings - but not ever knowing if I can do that. Waiting ever patiently for circumstances to change and eagerly anticipating that days arrival. Yet, it hasn't come. The day isn't even in sight. Only dreams of what could be exist in this tiny town. 

So here I am, a bit broken. Beat up. Bent. Now stricken with new wounds just when I thought I was healing. I guess this is the process though right? Its not an easy one. Its not a 'one click' and you're all cleaned kind of thing. As a generally impatient kind of person this kind of "it takes time" healing process is killing me.  And any new adversity adds to my general feeling of being trapped. How do I escape this? I've always made plans. I was almost an over planner for a teenager. But it felt good, I set goals and achieved them in the order I so planned. It felt so satisfying to be in such control of my life. And now, there is no control. Well, maybe it only seems that way.

So that is it, there is my answer. I need to get control again of this beautiful thing called life. I have been kicked down but I am fighting to get back up again. I can't wait for the clouds to lift to start living. I need to live despite the clouds. Figure out new plans. Make new goals. Dream again, and maybe, even accomplish some of those dreams. I don't always have to be trapped.  Sometimes it just takes a painful reminder that I am not actually trapped. Its perspective. Its all in how much you want to make changes. Its all how you view it. Its all within you.  It is all within me.  

Everyday is a new beginning. A clean slate. A fresh start. A chance to heal the wounds that left us the day before completely broken. So today I'm starting over.

I'm still breathing, so I can do this.  And so can you.

If you are feeling broken down and battered you are not alone. But you can do this. One foot in front of the other. Keep breathing. Slow steady steps. One day at a time. Remember it won't be dark forever. 

Saturday, July 23, 2016

Finding beauty in the wilted.

There’s no telling what a person is going through in life. The smile they shine sometimes is the mask used to hide the hurting going on deep inside.
Sometimes they’ve swallowed down the hurt so far that they have even got themselves fooled. They say they're fine. Not damaged, not broken goods. Their past has no impact on their future, or so they tell themselves. 

But sometimes when they hear the right song, or something jogs the memory just right, those walls they built so high to protect themselves from that secret pain,  starts to crumble,  their facade starts to fade and the truth slowly starts to leak out. Suddenly the pain they’ve worked so hard to ignore is right there in front of them, painfully blinding their sight. 
Now, it’s taken every single thing they have inside of them to just get out of bed. Memories are awakened and suddenly painfully real. Flashbacks holding them hostage. Images alive in their mind of what they cannot believe to be real feels like it was now only yesterday.
They’ve tricked themselves into thinking it was never a big deal.

But while you are pretending to be a-okay, you keep telling yourself that it only made you stronger. Wiser.  Kinder. Empathetic. It made you a totally 'balls-out' real life person in this world full of people only pretending to maybe have a clue. And that it truly did. But at what cost?  Has burying the past into a grave so deep really helped you be the person you always longed to be? 
You see,  I was raised with a bipolar father who was not receiving medical treatment. His days were dark. His past terrible. His father was an abusive alcoholic. So my father was hurting on a level I was unable to comprehend as a child. All I knew was the sadness I saw in his eyes and the anger I heard in his voice. I knew he was ill. It wasn’t anything he could help, change, alter or get past. He needed medical treatment to physically fix the mental disturbances that he wrestled with daily. That day would eventually come,  a time when he finally received medical help for the demons that had hassled him for so long. But until that time came,  hurt was bound to happened. The cycle unfortunately continued. 
I witnessed pain and heartache that a child shouldn’t have to observe. I grew up faster than most kids do. I kept my thoughts so quiet and my feelings so hidden that at times, I think I was invisible. 
But regardless of what happened,  what’s done is done. Life goes on. I must now learn how to live in this life the best I can,  damages and all. 

I now look at my children. So blissfully content in their life and place they call home. I’ve often stared at them in pure longing and wishing to be them. Totally confident in their own skin. Free of hesitation,  happy to be unique,  joyful,  and totally content to be who they are. All they need is assurance of our love for them and it’s as if we’ve watered their blooming souls. I’ve watched my youngest at the beach. She runs and bounces through the waves in a way I don’t think I ever did. She walks with her baby buns half falling out and could care less. Innocence at best. Happy to be alive. Eating up every kiss and every hug at every chance she gets. She lives and breathes love.  
Its not that I don't want to be loved. However, I have a bubble. An invisible shield keeping the monsters out. Keeping strangers at a safe distance. But in my years of making this bubble bigger and harder to break,  I’ve managed to keep so much good out along the way leaving me feeling isolated and questioning my worth. No one ever wants to openly admit to these feelings,  after all, even in this day and age there still exists a level of taboo towards the broken ones. It’s much easier to pretend such sadness doesn’t exist rather than to try and fix it. For me that was my unspoken determination for most of my years.

But eventually I had to learn that burying the pain as deep as possible only meant a harder recovery and healing down the road. Actually the first step was allowing myself to finally feel the pain I’ve worked so hard to block out. There was a reason I blocked it out. Accepting the hurt as it existed has stirred up in me emotions that I’ve refused to feel for so long. I thought life was easier living in denial,  constantly saying “it’s okay,  it was no big deal.” But when it’s finally pointed out to me just how sucky things were,  a new feeling emerges. It’s a half numb,  half terrified kind of feeling. One day I’m grieving on a level I never felt before,  the next I’m trying to ignore the pain again. So for now I'm focused. Determined. Must keep going however possible. Must find recovery,  must heal eventually. Even if it means acknowledging the demons that hid in my attic for so long.  At least I finally have an understanding for the difficult days that I before felt I had no right to have. At least now I can accept that the only way to move beyond the past,  is to finally grieve it.  

I’m dying to be the person I’ve always longed to be.

Friday, July 15, 2016

A simple hope.

Here I sit at my computer at 8:28 am looking at the coffee pot I cherish so much. Its empty. Normally by now its brewing and filling the house with the smells of comfort. Next I would sit here cherishing each sip as it filled me with a very simple joy.
But instead today my coffee cup is empty. My husband has refused to make himself a cup knowing I can't have any. My reply was "But I could smell it." Funny how we cherish such simple things to the point of even wanting to smell it. 
But today I've been told no food or drink or sips of anything, in anticipation of heading into yet another procedure, this time done in the OR. 
 A simple procedure many have said. Easy for them to say. Simple how? Simple in that it doesn't involve cutting my skin open. Simple in that it should only take an hour or so. Simple in that I'll get to go home today.

But its not simple to me. 
It will either answer so much or leave me hanging in a hopeless kind of way.
Will it determine the source of my pain for so so many years? Will it prompt a new treatment, one that can be a little bit scary? Will it give an answer, a simple answer that has been so difficult to find. Will it give an answer that we weren't expecting? 
Those are the questions lingering in my head as I prepare to head to the hospital today. Normally these tests are done in an "We can do this kind of way, would you like to" , this time it was "This is what needs to be done." I attempted to fight the suggested test of need, arguing: "Are you sure? Isn't there something else we could do?"
I mean really, having a tube go down my throat into my stomach to possibly take a biopsy of my pancreas from there, is a bit nerve wrecking to say the least. The idea of irritating the already irritated is not my idea of a simple test. 
However, I know this is simple in terms of, its not open heart surgery. Its not a lung transplant. Its not something that is going to land me in the ICU for days. So therefore, it must be simple. 

In reality, I've worked this whole procedure up to being a mountainous nearly impossible feat that now my hope is it doesn't end up anything like my mind has imagined it to be.  
Hope. I use that word a lot. Hope is such a simple small word with a ginormous meaning to live up to. 
Hope they find an answer.
Hope its not a bad answer.
Hope I'm not left hanging once again.
Hope there is treatment.
Hope the treatment isn't too rough.

Hope. So many things to hope for such a simple outpatient test.   

Thursday, February 18, 2016

From within the womb.

I am seeing my life change before my eyes. I've been given love on a level that shouldn't be ignored. The love that overflows from my daughters, husband, and parents is not something I could ever take for granted. Love from friends showing their support and kindness builds me up and I am eternally grateful for what they have shared with me.
But life is changing. Life on a level that is hard to put into words, but I will try.
Life that begins as a child impatiently waiting for that one particular right of passage, the sign of having finally become a woman. The thought that life could be carried inside mine was always something that filled me with such contentment. I felt whole. I could be a mother I thought. Of course this wouldn't be fulfilled until many years later but it was something I could not wait to have happen to me. And when it did with our first child, she truly made me the person I always longed to be, a mother. And for a while, a damn good mother. I was pleased with what I did with her, how hard I loved her and how I would empty my soul on her behalf.Sickness set in not long after she was born. But having a newborn made me move past whatever pain I was experiencing, because at the end of the day I saw this angelic-like-china-doll baby. She was mine, all mine and I couldn't believe it.

Life grew even richer when her sister joined the world. I feared the kind of mother I would be with another little one in tow. Juggling two is sometimes an emotional battle I still fight daily. Do I give too much attention to one and not the other? Am I kind enough to one, or too tough on the other? Up and down, around and around, life spins each day with one question leading to another. Am I a good mother to two children? I am trying, but at times I think failing. Sickness has sucked my spirit up and at times I fear, devoured it. But there are sunny days where I find out that my spirit of love is still there and fighting to get through. However, despite knowing my limitations full and well, occasional dreams of the past come bubbling forward. Dreams I have tried to extinguish on many occasions. But knowing the possibility was still there made it bearable.
And now that possibility is coming to an end.

How does a woman mourn the loss of what makes her unique? Of what makes her special amongst men who walk the earth with all their strong manliness? How does she mourn the loss that life could be carried within her? One day she bares a belly-full with another heart beating inside her and the next there's a real little person to hold onto that is breathing, crying, living, continuing the circle of life.

But then in a matter of minutes that possibility is removed and placed into a sterile silver pan just like that. Sent off for examination by a stranger and then tossed into a hazardous waste container leading to incineration. My womb. The place that cherished my babies before I even could, now destroyed. Why am I being so dramatic? After all, I already know with our current circumstances as they are,  to add another child to our family would be an unwise, unrealistic and probably irresponsible decision to make. My heart is already so full of love now, blessings and beautiful days. In being 100% real, I actually don't want another child. In fact I am straight up terrified of that happening, knowing what my limitations are right now.  But what if that feeling changed in a few years? Chance gone.
However, I think it's more than that. It's the strange disregard for the fist sized organ that made me a mother in the first place. It's the ripping it out and tossing it aside without so much of even a thank you. So for me...... while the Dr works to remove a part of me that now causes pain,  I'm certain as I count backwards from ten while they place the mask over my face, tears of appreciation for the 77 weeks (collectively) of precious protection it gave my babies will flow from my eyes.  

So when it's all said & done and March 1st at 11am has come and gone, I know that I am not losing what makes me a woman. I'm still me.  I am simply recreating myself. Finding myself to freedom. Finding a way to not live in fear of unnecessary pain. Not that pain will be gone from my life,  but pain that *maybe* in one area of my body, I don't have to have anymore. Sitting here not doing anything won't fix the problem. So I have to roll the dice. I may win,  I may even lose. But if I don't try I will never know. And as far as dreams go I've had the most important ones fulfilled, which was to become a mother to two beautifully different and wonderfully whimsical daughters. And for that,  I am eternally grateful.