Thursday, March 23, 2017

The day I became a zebra.

"When you hear hoof beats, think of horses, not zebras."




I remember it like it was yesterday. I was at yet another rheumatologist appointment hoping for some sort of answer and direction.  Like usual, I begin to hear that all my labs for the specific antibodies they are searching for all came back negative.

Normally, people think this is a good thing. But when you've been sick as long as I have, you are craving answers. Hearing 'negative' just means that you start to question to yourself- if you are really sick.  I mean, are you? Yeah there's definite abnormalities to your bloodwork which is why your rheumatologist is so determined to figure you out.
But maybe you start to think to yourself, that maybe everyone has some abnormalities and you are just overthinking how you feel. Just suck it up. Everyone is as exhausted, everyone hurts this much.

As she listened to my lungs and I focused on taking deep breaths and fighting to keep a super brave face on, she suddenly stops and quickly returns to her computer. I sat there, with my heart in my foot and my insides feeling the feeling of defeat that I had become so use to feeling, she pulls up one of the test results. "Well there was something actually."
One of the labs that had to be sent away to a research facility did not find what it was sent there to find.

"They found several unknown antibodies" related to connective tissue disease.
I felt myself wane sarcastic as I replied "You mean, like an 'Ashley' disease?"
"Yeah, pretty much" was the response from my rheumatologist.

I felt slightly irritated as it was not the first time I had heard this from friends. And here my doctor has just told me I have something that present day technology and medicine does not know what it is.
I became a zebra in that very moment.
What does that even mean?

"When you hear hoof beats, think of horses, not zebras" is an old medical saying meaning, usually it is not a rare unknown diagnosis so don't jump to that conclusion. Its usually a horse- not a zebra walking in. I was the zebra. Doctor after doctor would look at me, look at my labs and shake their heads in complete confusion.

Finally the day came when I got to be seen by a real life Doctor House and his panel of doctors and assistants. They took notes, looked at my labs and talked back and forth to each other of their ideas.
"She definitely has autoimmune disease."
"Yeah, a crazy autoimmune disease."
My husband dared to ask the question that has been on my mind for 9 years.
"Do you know the name of it?"
A little bit of silence, and a little bit of laughter swept through the room.
The doctor replied- "You want a name for it, do you really?"
He smiled compassionately and said "The Ashley."
After my husband and I laughed he got serious and said,
"We would call it systemic auto-immune disease because I believe its affecting multiple organs." This one doesn't have a known idenity just yet.

Then one of the other head doctors chimed in said "Look, lyme disease existed long before they knew about it. It is real and was real to all the patients who had it. Just because they hadn't discovered it didn't mean they weren't very sick, all while people and doctors had labeled them as crazy."

But I am not crazy. I'm not being told I am overthinking it, have had too many tests done, or that I should not be worrying about that stuff and to go live my life.

I was told there are treatments and they want me to feel better. It won't be easy but doing nothing is not helping me and we can't continue on that road.
There was suddenly hope. Hope that while my kids are still kids full of life, love and energy in this present life that I might be able to keep up with them. Or hope that my body wouldn't hurt so bad.

They've identified the source of the problem (my immune system), they are determined to try to fix it, not just put a band-aid on it, not just throw drugs at me and call it a day.
This will be a process, this will take time, adjustments, and many more discussions.
But this something is a lot more than the nothing I was facing.

The journey continues............


Here's a little video of our journey to Hopkins:




If you know in your gut that what your doctors has told you is wrong or not making sense, do not stop trying to get answers. They are not perfect, they are not always right. But eventually you will find one willing to search a little bit deeper and try a little bit harder. Don't give up!


Wednesday, February 22, 2017

Reasons.

On days with pain, fatigue or other illnesses, life can feel so daunting, so dark. 
Imagining growing old when you already feel 20 years older is a thought you 
try to not even think about.
Some days you are left with nothing but a broken heart held together
by pain pills and heating pads.

On those days it’s hard to not feel like a burden on society.
It’s hard to even feel human.
It’s as if you are a living the life of a decomposing corpse.
“I just want to be normal” is on repeat in your head. 
You anticipate the next Dr appointment with such hope. 
But so often your hopes are cut up with the razor sharp edges of disappointment.

It’s always a wait. 
Wait for this flare too pass, wait to see the doctor, wait to try the only treatment they think will work
but insurance will fight it until you give up. So you keep waiting.

It’s hard to keep holding on.
I won’t lie, I’ve had those dark moments of despair.
The feeling that it’s never going to go away, not in this life anyways.
The feeling that my world is unraveling before my eyes and I simply can’t stop it.
I have felt like a burden to my family.
I have felt hopeless despite my efforts to hold onto hope so tightly.

Let me tell you how much that all hurts.
It is so easy to lose sight of the beauty that still surrounds you or the fact that hope still remains for the future.
It’s easy to forget the reasons for your fight.

Yet in those moments its imperative that you remember your reasons to keep pushing on.
My reasons never fail to tell me how much they love me as I am.
My reasons remind me that there is no other love for him. 
My reasons provide me with butterfly kisses and hand drawn pictures of how they see me. 
My reasons tell me they would never ever want a different mommy.
They tell me how much they miss me when they are gone for just a couple of nights.

They are my reasons to keep fighting and I cannot give up now.
Those reasons remind me that there is a light at the end of the tunnel after all,
 even if another tunnel is right around the corner.
Those reasons help me laugh again and for a moment they help me forget the pain. 
For a moment those reasons warm my heart that had become chilled from the bitter cold of never feeling good enough.

They help me get through the thorn bushes of life.
They remind me that I simply have to get through it cause when I get to the other side,
I might have some wounds from the thorns tearing up my skin but I’ll be stronger from it and maybe I might be able to help others if I don’t give up now.
I might be able to help my very own reasons in the future.

If I keep fighting for answers and treatment maybe I’ll save them from walking the same exhausting path I am walking. 



So please remember even in your darkest hour you have reasons to keep going, to keep fighting, to keep breathing.

Nope it’s not easy and there will straight up be days that you forget your reasons to keep fighting.
But when a new day begins try to remind yourself of the reasons why you are fighting so darn hard. 
We all have them, sometimes we just need to remind ourselves what they are.

Make a list of what they are so that on bad days you don’t have to work so hard to see them.
Whatever your reasons are – hold onto them, don’t let go and keep fighting.

Sunday, January 15, 2017

The dark side of guilt with chronic illness.

Being a mother brings with it the most amazing feelings. It has an almost out of body like feel to it. Thoughts of how this little person could amazingly be yours. 
A real live little human who is breathing,  growing and simply stunning in every way. 

Being a mother means you’ve begged time to stand still. You’ve watched the clock only for time to seem to fast forward in a way that cannot be controlled. You’ve spent hours breathing in the smells of your babies, hours gazing on their little faces,  memorizing their each and every detail. Knowing every freckle, every dimple and even the very length of their long eye lashes that you secretly envy. How could they be so perfect?



I felt all these feels. I owned them. Embraced them. Breathed each and every emotion in. 

Time argued fiercely with me, time demanded to go on. It demanded to take my newborn into the next stages of life. It demanded they grow faster than I thought possible,  that they go from helpless to crawling, from crawling to walking and to eventually becoming their own little person full of their own unique personality making decisions for themselves. 
Time refused to stop. 

When I worked and the workday came to an end I would immediately rush to pick my babies up. Another minute could not pass without seeing them, to once again breathe them in and feel their arms tight around my neck. 

Then something happened. 


Time caught up with me. Time demanded that I know now that all the years as an exhausted and fatigued teenager had been there for a reason. 

Time now nearly stopped. Time stood still as pain took up a permanent residence in my body.  Days turned into weeks,  weeks into months,  and months into years as I struggled to understand what was happening. Why was my focus on my babies being so blurred with pain? Why did I go from begging time to stand still to now begging it to hurry up? Hurry up to get answers. Hurry up to feel better. Just hurry up. 



Pain is a tricky thing. It shifts your focus to just getting past that moment. You wait impatiently for it to pass. But while you are waiting for the endless and chronic pain to pass in what seems like a frozen moment in time,  life keeps going for everyone else, including the babies you begged to slow down. 
But suddenly with life wearing you down with the exhaustion of an endless flu you find yourself almost wanting your babies to grow up just a little bit more. To not cry so much. To be able to express themselves with words and not just a display of emotions. To be able to soothe themselves just a little bit, as you don’t have much left in you to soothe them. 
Yet, you do anyways because they want you. So in pain and in exhaustion you give your babies what very little you had left.  And what you had wasn’t what a typical parent has left. You were already empty, but you poured the last few drops out for your babies. 

Making the greatest joy you once had of parenting now the biggest struggle you could never have imagined. 

Your thoughts shift to a time when they maybe won’t hang on you quite so much. When they won’t cry so much. You wish them older and yet while you are doing that you wonder what has become of you -because you know deep down inside that time already moves way too fast. Way-too-fast.



Now their childhood is becoming a blur. Memories are mixed with thoughts of pain. Though there may be many wonderful times and good memories are still being made for which I am beyond grateful for,  it’s so often tainted with a flu like feeling. 

So with all this being said, I realize there is a great sadness behind these words. There is a bitterness that lingers in the air.
Bitter that one of the greatest joys I have ever known had been so abruptly altered for me. Bitter that I couldn’t completely enjoy my babies without the heaviness of guilt hanging over my head. Bitter that there are days I need to rest and my babies need to be away from me. Bitter that their mom can’t be just like their friends mothers. 

Yes, I put on a good show when I have to,  I can usually pretend this chronic condition doesn’t exist when it calls for it but not without a cost. Pretending to be normal will almost always result in a need to beg my body to forgive me. 

But I’ll beg my body to forgive me for the rest of my life if it means making memories with my babies. 

However, I can’t help but wonder what life is like as a mother without endless chronic pain and exhaustion. 


I can’t help but think what life would have been like if this illness just held off until my children were grown. Would I feel less guilty? Or less bitter about missing out on too many moments?  Less torn between my bodies demands for rest and the insanely strong motherly instinct to be there with my babies? 

Or will that feeling regardless of their age never go away?

So if you are a mother with chronic illness fighting the same guilt I am, please know you are not alone as I am not alone. When we are feeling heavy with feelings that only a mother with chronic illness could understand, reach out to others that understand. 

In the end, we simply have to remind ourselves that 
love is what matters. 
To take the moments we can and soak it up like a dry sponge. 
Let love fill the gaps of guilt.

Love is after-all, what the heart remembers the most.