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.