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. 

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..........

Up on cloud number 11....

 

11 years ago on a Saturday just like today, the air was clear and the skies were a blue I won't ever forget.  I woke groggy from the sleeping pill I had taken the night before. I laid in bed, watching my friends getting their hair all done up and beautiful. They starred at me wondering what was wrong with me. Why was I laying so peacefully in my bed, while they scurried to get ready? Well, for one, the sleeping pill. 

But the other and most important reason was the fact that I wasn't just getting married today. I was marrying my soul-mate, my best friend in the whole entire world. What was there to be nervous about? Sure, I don't like large crowds, a lot of attention on me or an excessive amount of hugging from people I'm not overly close with....... But those things aside, I couldn’t wait to start our life together. 

Fast forwarding 11 years- I could not ever imagine our life would be where it is today. It has not been easy by any means. Along our journey together we've lost loved ones, dealt with numerous health problems , job and economic struggles, and even experienced near death situations together. But along with that-  we've managed to have a lot of fun. Late night last minute trips to the beach, including a strange man that jumped out in front of our car in the middle of the highway- that still gives us the shivers & every now and then we question what exactly the heck that was, downtown stalking Bryan Adams together in hopes of getting an autograph..... But most importantly,   two beautiful little girls have come along, turned our world upside down and made us a family. One little girl just like her daddy, and one little girl just little her mama.  

Breathtakingly beautiful in completely different ways. And I would never have any of this, any of these life experiences and beautiful babies if 11 years ago today, I hadn't married my best friend. And even though I don't believe that dreams speak to you in some strange way - I am grateful for the dream I had at only 17 years old, before we even started dating, exposing the shadows of what my life would have been if I did not have him in it. My mom still remembers me telling her about that dream to this day. I think even she knew at that moment that we were meant to be together. 

And I am so happy that my dream gave me a glimpse into the emptiness I would feel if he was not in my life. But he is, right where he belongs, where we belong- together.  Happy Anniversary my love. 

When the day bleeds tears.

Sometimes the darkness becomes so thick that the sunshine is left fighting in the shadows to be seen.

Sometimes my head becomes so filled with unnecessary thoughts that it pushes the relevant ones out. 

Sometimes the days are so short, leaving the nights to drag on and on. 

Sometimes the pain in my heart simply makes no sense, yet there it lives. 

Sometimes on days like today, I wake up feeling ok. As evening approaches and my fatigue is more than real, I am grasping to retain some sanity. I'm striving to hold on to the kindness my heart yearns to give, but by this time my kindness is clouded by the pain. Both in my figurative heart and in my physical body. 

The day has brought many unexpected surprises. Two little girls that are, for whatever reason, insanely needy for their mother. What is it exactly? Do they sense something? I am good at putting on a face, real good. Unless you are the one man in my life who holds the key to my heart, and the matching ring to my finger - you likely won't know anything is up if I don't want you to. But today my neck is throbbing, my head reminds me of it's presence by the random knocking pain and my elbows feel like someone is stabbing a razor sharp knife through them. Yet my babies are sucking the last bit of energy that I have out of the marrow of my bones. And I am happy to give it.  But at some point, I'm not going to have anything left to give. And that is scary. When will that point come? 

Right now I would be happy to lay face down on the ground and not move a muscle while listening to the wallflowers "one headlight" blasting in the background, so I can feel comforted by someone else's emotions poured out in the form of a song that has moved me since I was a teenager. 

But I can't. Life must go on. The smiles must be smiled, the tears forced back, and the mommy mode on in full fashion...... Well, "with one headlight." 

"There has got to be something better than in the middle" , where I am presently stuck. Stuck and sinking in the mud that is so dirty that I am left suffocating in it's lather. My insides yearn to be so much more but my body commands something else, leaving my brain to over think every possible thing. At what point will it stop tormenting me? 

Someday it will happen. Someday. 

Learning to let life go on.....

Seven years ago, I started on a journey as exhausting and financially overwhelming as one could imagine.  Instead of chasing butterflies and fairy-tales with my newborn little girl, I was chasing after my own health. Good health was becoming a distant memory. The problem was it all appeared to be a façade, not reality. But my reality was everyday waking up in extreme pain, followed by exhaustion, and one body part failing after another, with no known reason. Was I making this up? Is it just normal to start to hurt and ache and become exhausted at 23? Maybe I am just too sensitive. Maybe the pain I am feeling is completely normal and I just need to toughen up and shut up.

However, my blood work showed random things were off. But not off enough for anyone to actually care. My complements were mildly low, my gamma was mildly low, they detected a band of protein from an unknown source, my kappa/lambda ratio became off, my bilirubin was elevated for years and only going up with each test, my immunity started to wane, my platelets were abnormally low, and my thyroid was on and off…… But none of it meant anything.
It all just meant I “had a bunch of random different things going on with my body that weren’t in any way connected”, said one of the rheumatologists.
Or, the numbers that were slightly off, were off “simply because it was just me”, said many other doctors. This crushed me. Yet, they continued to poke and prod at me. My days off from work became days filled with doctor’s appointments, instead of making memories of days at carousels and parks with my babies.  With every vial of blood drawn, I hurt for answers. With every MRI, Ct-Scan or ultrasound I held my breath waiting for the results. I stopped opening my insurance letters, cause the rising cost became too much to look at.  I can only imagine how people thought of me. “Ashley is having a bad day today.”  “Ashley is going to the doctors today and can’t do that with you.”  “Ashley is going to a doctor in Syracuse, Buffalo, and even New Jersey” …. Why? Why don’t you just accept the diagnosis the doctors here have given you?

Because I knew there was something more. It wasn’t just fibromyalgia. And I tried to accept that diagnosis many different times. About one year ago in fact, in my desperate attempt to move on with my life I submitted a blog on here stating that I accepted the fibromyalgia diagnosis. But it didn’t last long. Shortly after my so called acceptance, my kidneys started alerting my doctors to something being wrong.  My primary care doctor called me up one night and says you need to see a nephrologist. I literally laughed out loud and said “well crap—that’s one specialist I haven’t seen. Do I have to?!” “Yes, you do. You have protein in your urine.” So I asked why. “I don’t know – that’s why you need to see him.” One more doctor to add to the list. Another test to do, and another $30 co-pay.  To hear “You are one complicated girl. There is SOMETHING wrong with you. I just don’t know what. To be honest – no one knows.” 
Thanks, that was comforting to hear from a kidney doctor. However, I was starting to feel that at least I wasn’t losing my mind. My body was trying to tell them something- it just was struggling to get it out. Actually, my body was fighting so hard to not have this problem that it was keeping the numbers that the doctors wanted to see – suppressed. “At bay” as they say, or keeping it “under wraps.”
It was there – but barely. My body was working overtime to combat whatever this demon was that was plaguing my veins, my organs, my nerves, and my even my thoughts.  My body became so overwhelmed that the normal day to day stress of life, I couldn’t handle. I began shutting down. Anxiety and panic filled my mind. My thoughts turned to my girls, my beautiful babies that I’ve had the privilege of bringing into this world. But what had I done to them – will they be plagued with the same never ending story that their mother battles? Will they wake up one day suddenly sick and have their world turned upside down? Better yet – what about right now, as they are living their innocent pure lives with a “sick mother.”
How do you explain this to two young girls? Beautiful, happy  girls that should be consumed with chasing fireflies, making mud pies, and reading fairy-tales.
Instead, their mommy is laying down because she hurts. Or she is sleeping, and needs quiet time. What will it be like for them to grow up with this? My mind turned to thoughts of – “it would be better if I wasn’t in their life. They could find peace and happiness without my dark cloud hanging over my families head. They could pursue their dreams and goals with no one holding them back.” Sadness consumed my heart. Despite the beauty that surrounded me, I had become a broken shell of who I had once been. Unable to see the light anymore, starving for answers,  I was losing hope.              

   

At my breaking point, and with much encouragement from those around me, I gave it one more shot. This time, I was getting out of New York State all together. My husband and I head out on a journey to New Jersey, to see a rheumatologist there at an "Auto Immune Disease Institute". 

It seemed at first sight, to be a semi-disappointing trip.  I had brought all my test results and records with me – but he couldn’t see anything “auto-immune” going on with me.
Once again, the feeling of disappointment started to set in. He had spent an abnormally large amount of time with us. I felt he gave his full attention to me, and was genuinely looking for the answer but none was to be found in the records I had brought. Before the appointment was over, he ordered some extra tests, and threw out something I hadn’t heard of before. “Have you ever been diagnosed with dysautonomia?”

 Dys- what? Mind you, it had been 6 years now of my personal online medical research collecting -  yet I had never heard of this word I couldn’t even pronounce.  “I think you need to see a specialist who deals in dysautonomia specifically. "  So we left, and he apologized for not being able to give me “more.”
The wind was partially taken out of my sails. “Another doctor? I don’t think I am ready for this.” But my husband encouraged me on – “Do what the doctor says. Find a specialist like he recommended. That’s our next step.”
  

This next step takes us to Buffalo. To my now 4th neurologist, a specialist in dysautonomia.  It didn’t take very long after a brief conversation and examination for her to diagnose me as having a dysfunction in my autonomic nervous system, coupled with POTS- which is basically tachycardia every time I am in a standing or walking position. Geez, no wonder I am so tired by the end of the day. My heart has been acting like its doing aerobics for hours on end, each day. That would tire anyone out. But my final question to her was- “Is this dysautonomia and POTS – primary or secondary?”  - Meaning – is something else causing it? She did not know.  However, my gut knows. My insides continue to tell me that there is something ultimately causing all of my issues.

Everyone was so happy. “You have an answer! A diagnosis!”  Those around me said.
Yes, I did. And there were drugs and therapies prescribed to help me feel better. But I still wanted to know WHY. Why – is my nervous system being affected now, on top of everything else?

To not lead you on any longer. I still don't know completely. Though, a rapid and unexpected trip to Syracuse to a Rheumatologist up there, who had helped a girl in town here when no other doctor locally could, I found myself on a whirl wind trip with a days notice meeting a doctor who I suddenly had ridiculously high hopes for. I handed him my "Bible" - which is a 3 inch thick portfolio filled with all the blood work and tests I've had done in the last few years, to which he reviews page by page. He examines me, and states "I think your pain is more fibromyalgia, but its possible you do have some undifferentiated auto immune disease." Meaning- it is a disease and very real, but it just can't be placed in a more specific category at this point. He said he would treat me with medication depending on what my test results show. He took 5 vials of blood, and off I went. 

The blood results came in online over the weekend. What I first saw was my inflammation levels were practically non existent. The next thing that came in was the antibodies detected in my body. Antibodies that are attacking my own body.  They were low though, but still there. Next to come in was the "ANA" test- which for the last 7 years have always appeared negative. This Doctor however, ordered this test to be performed in a different way. This test shows the four different patterns that the ANA can be presented. 1. Homogeneous, 2. Speckled 3. Peripheral and 4. Nucleolar - normal ranging from 0-50. Mine came up positive for Speckled - at 1250.  

So what does any of this mean? According to my doctor it means I have an Undifferentiated Connective Tissue Disease. Meaning - disease is present and active. But it cannot be specifically defined yet at this moment in time. It could progress into Lupus, or it could stay as it is. It could progress into Mixed Connective Tissue Disease, or, I could go into remission all together. 

The diagnosis is somewhat bittersweet. Ok- Ashley, you are indeed not crazy. You are not lazy. You are not making this pain up. The proof is in the pudding, errr, blood work. My body just continues to fight itself - from turning against itself.  Does that make sense? My body is attacking itself - from the inside. But - my body is also fighting against its own attacks- trying to keep this disease at bay. Either way- I will be going on a barrage of medications. "Anti Malaria Drugs", Steroids, Heart Pills, and other medications to interrupt the disease process, get my heart under control, and ease the symptoms of the other issues I deal with on a daily basis.  Does this mean I can finally start feeling better? I hope so. I am hopeful. Does this mean my journey is over? Nope, not even close. There are still new medications to start, more tests to have done and new problems to worry about. BUT, I am looking to the future will eyes of hope once again. Even IF the medication doesn't help - at least I know I am not crazy. I haven't talked myself into having pain that my body is mysteriously making up. It is real. But knowing that its real - gives me the determination to fight it even harder now. To move on with my life - the best way that I can. I have a bucket list - and I plan on attacking that list with the greatest of force just DESPITE this so called disease. I may crash and pay for the activities I chose to do - but at least I am going to DO them. Look out world, cause I am fired up and ready to go. "UTCD" - or "whatever" you will eventually be - you will not define who I am as a person. You may define my limitations at times - and those times may be many. But I'm not giving up. Not ever.