Thursday, June 26, 2014

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. 

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