Sunday, November 23, 2014

Dear Dr. D:

   This letter is on behalf of the thousands of patients that have come to you in the slightest hope that you can give them a small piece of normalcy again. 

We came to you in tears, in pain and in disappointment. Our bodies have let us down. They've taken us hostage in our own skin. Our bodies have waged war against our every fibers. So yes, we came to you in tears that we could not control. We reached out our hand to you in hopes you would take it and lead us to a more peaceful place. No, we didn't expect miracles. And we didn't expect to be cured. But we wanted answers and something as simple as a plan.

We heard good things about you, we held our breath as we decided to take another leap of faith and schedule yet another appointment with yet another specialist.

But what you may have misunderstood about ME (us) is that I actually have things I would rather be doing. I would rather be spending time at home bonding with my children, rather than sitting in a cold sterile waiting room with the news playing in the background. Even snuggling at home with my dogs while reading a good book is on my *would rather do list* - then sit here waiting for you. As I wait for you my nerves take over. Your reviews are great. You have a few who say you were less than understanding and you barely gave them the time of day, but I chalk that up to that being the person who can never be pleased. It won't be like that for me. I'm an intelligent bright patient and kind person. I've come prepared and I've done my homework. Certainly the you will appreciate that and will be moved to help.  You will see me as the person that I am - a mother - a wife - a friend to someone- someone's daughter - you will see me as a *person* this time. Not as another medical chart, another icd-9 code, or a potentially psychotic woman who has too much time on her hands, spends way to much time googling and needs to be treated with antipsychotics and sent for a psychiatric evaluation. (Because clearly I love coming up with new ways to feel worse- spend less time with my family- and let my husband down yet another night. ------- That was sarcasm incase you weren't sure)
No, this time will be different. I will tell you my endless amount of struggles and symptoms for the last however many years, and you will be quick to give me a diagnosis. I will take a deep sigh of relief and brace myself for the next stage of
my life: slow but hopefully steady RECOVERY....
Oooops sorry!! That is how my fantasy always goes.  Now back to reality........

Reality becomes the bitter sting I am quite use to. Reality is quick to remind me that doctors have become jaded in the world we live in. Overworked, utterly exhausted, the corporations that pay them have unrealistic expectations of how many patients the doctor can see in a day,  and patients that were once people have now become figures of sales and dollar signs as pharmaceutical reps come and go with their pitch and take of the doctor's time that an ailing patient actually needs.

The doctor has learned to rely only on what is seen on those mysterious papers set before him. Nothing in your blood work, then you must be fine. "I don't see any of the issues you are telling me. You look healthy. You're staying busy." Why are you wasting my time? - I often wonder if the doctor in his or her checked out stage is actually thinking that about me, because all too many times have I been left to feel that way. Leaving the doctor's office trying desperately to hold back tears because Lord FORBID you give them another reason to say it is all in your head. Because the pain I feel, the ache, the stabbing, the burning, the extreme exhaustion that is crippling my life is NOT in my head. It's not something I can "positively talk myself out of" - but thanks for the suggestion.  What you can't see because I look fine to you is how hard I am trying to feel normal. I wear makeup because I feel like a garbage can on the inside. I smile and am cheery to you not because I don't hurt or am not exhausted and dying for help, but because I am hopeful and holding onto the last bit of normalcy that I have left. And one more thing..... I am also strong. I have struggled for endless years chronically fighting something. So the pain that 7 years ago I would have rated as a 10 is now only a 4. So if I seem to be downplaying how I feel, it is because I have become use to feeling sickly. I'm so use to feeling sick that I no longer recognize the feeling of "coming down" with something. Because I always feel like I am coming down with something, weak, exhausted and riddled with pain. Always.

However, I am grateful and fortunate beyond words that after 7 years of being given the wrong diagnosis, having muscle relaxers thrown at me & calling that treatment,  I finally found a doctor that believes me when I say I feel bad.  He doesn't want to see the pictures I've taken to prove the things I go through. He says what I say is enough. He wants me better. He wants to help. He is treating me with auto-immune disease modifying drugs and when necessary --- gasp--- even steroids. Steroids when I'm not even showing inflammation in my blood work. Why? Because inflammation doesn't always show up in the test results. And just because it doesn't show up-- doesn't mean it doesn't exist.
  Just like the wind. We feel it, we hear it - but we cannot see it. We just feel the pain that cannot always be seen.

So to the doctor out there that saw me and the thousands of others, the doctor who made up their mind about me because I appeared to be "just fine", or maybe just more work than you would like, please read this with an open mind, as a kindly reminder that we the patient are not just numbers, insurance issues, or someone else's problem. We are human. Real and ready to be helped. 

Monday, November 17, 2014

A letter to my daughters, part 1.

Becoming a mother was IS the greatest achievement in my life. Like many other women – I dreamed of the day I could call myself a mother. Carrying my baby dolls around with the gentlest of care, brushing their hair, making them pretty. Dragging these poor little baby dolls around to every corner of the world that I found myself. Patiently waiting to become a woman, knowing my abilities to carry a child was even closer.  Stealing away every little bundle of blue or pink that I could, giving the mom or dad a much needed break was heaven for me. Finding attachment to a baby that returned the feelings was a much needed confidence boost.   Eagerly awaiting my turn seemed like forever. But eventually my turn came, and my life forever changed.

The fear of almost not having our first baby was real and life changing. First- the emotional roller coaster of finding out I was pregnant at 23. Boy the hormones were in full swing at only 6 weeks along.  The fear of becoming a parent, the heavy responsibility that suddenly hung heavy over my head. The long awaited for moment that had arrived left me paralyzed with fear. Is it real? Could it be possible? A little person is growing inside of me? Am I really to be a mother?  A person responsible for keeping another little human alive and well for the next--- 18 years lifetime?

 I remember the moment your daddy found out. Munching away on some chips – as he believed it was only a false alarm. Telling me to take the test to ease our (his) mind.  Showing him the result I saw his mind suddenly shift gears from enjoying his afternoon snack to becoming stiffly serious. “I don’t know what that means!” as he stared at the test – confused and nervous. I tried to show him the box so he would be able to decipher the result himself.  But the adrenaline left him unable to comprehend what he already knew. He was to be a father, a parent himself. At this point the nerves for me are shifting to excitement and the complete happiness I had long awaited for. I try to adjust now to your father’s shock – he had hoped to wait a few more years, hoping we would be in a better place financially. But he now admits that we were in the perfect place – because if we had waited, we wouldn’t have you, our firstborn little girl. 

A couple of weeks later, combined with some lower right sided pain & results from a recent blood test, the doctor warned that we may be losing you. An ultrasound showed they could not see you – where you were supposed to be. “Ectopic pregnancy”, they said. “Your hormone levels should be doubling but they have gone down. And we cannot see the baby in the uterus.”  If that wasn’t bad enough to hear, the doctor followed up with “we may have to give you a shot at the hospital – so that you lose the baby and it’s flushed from your system.”

As I sit here today writing this I am struggling to find the perfect words to explain the sheer dread and utter panic that paralyzed my emotions. But I can’t find the right words to express how horrible it felt to hear those words. I cried. I cried like I have never cried before and haven’t cried since. I cried at work.  I cried at the hospital. I cried at the doctor’s office in the waiting room before they took more blood to confirm their suspicions. Pregnant patients, older patients and office staff all sat quietly and watched as my heart was being ripped from my chest. I remember crying to my mom – thinking my chance to become a mother finally will now be put off for the few more years that your daddy had wanted to wait.  I ached for your existence. I felt pain for your life that might be cut short. For the next 48 hours your existence in my belly was our only concern. Sharp needles taking blood, ultrasounds of my tummy, and many hugs and tears in-between was how we spent those 48 hours. Counting. Waiting. More counting. Looking at the phone wishing it would ring --- or wouldn’t ring. Maybe we didn’t want to know what the doctor was going to say.  I had become so exhausted from the emotional battle we were fighting that I passed out next to your daddy and finally found a few hours of sleep. Then the phone rang, and it was the doctor. I took a deep breath, prayed for strength and answered the phone. As I write this, I tear up. The emotions of the saddest sadness I had ever felt quietly creep back into my heart. I have never longed for hearing good news from the doctor, like I did in that moment. Your daddy quietly listened on. “They think they see something in utero. And your blood work – though a little low – is going up.” And that my dear, oldest daughter was the greatest news I had ever heard. As of that moment, you were still safe and sound in my tummy where you were supposed to be. Pure relief. What I thought was taken away from me was now returned. 

Resurrected, in a way. 
Exactly what your name means. Asia – “Resurrection or Eastern Sunrise.” To me, you were resurrected. You survived the hardest battle I had ever faced. And now like a ray of warm soothing sunshine, you were rising in the east comforting all who you touched. And today you continue to warm the souls of anyone you touch. Your deeply seeded emotions brings me to tears at times, observing how you put others feelings ahead of yours in a way that no 7 year old should understand at this stage in life.  You held back your tears over your passing grandfather for 7 long months, keeping the emotions suppressed and buried deep down inside so that you wouldn’t cause your daddy more pain. And when you finally broke and allowed yourself the chance to cry – I cried with you. Not for the sadness of losing a loved one, but for the fact that such a beautiful young child had the level of maturity and love that you possess. Most adults are unable to hold back their tears, but you did.  

I watch you today, my little genetic twin; possess the same desire to be a mother. Mothering and caring for your little sister, so often needing reminders that you are not the mommy and therefore need to sometimes, take a step back. Frustrated, you’ve more than once responded that “you are a woman, and will one day be a mommy”, so it’s hard for you to not act like a mom right now.
 I know what that feels like. You have so much love oozing from your little beating heart that it is almost impossible to not mother whoever and whatever comes near you. My darling little girl- please never change. Always stay true to you – the beauty that you are. Exuding passion and whimsical daydreams, creating visions and mastering them, celebrating life in the grand way that you do. No matter what happens live, laugh and love as hard as you always do. Do not let fear stand in your way. And always remember that I love you in a way that you cannot understand until you one day become a mommy. 

Loving my girls to the moon and back, and then back again is simply not far enough to express the length and depth of my love for my little girls. My angels, my beauty's that I have the privilege of calling my own.Thank you Asia and Serenity for making me a mommy. 

Part 2 to follow..........