Stability of Never

          "Do you think anyone is going to be able to drive a wedge between us and Christ's love for us? There is no way! Not trouble, not hard times, not hatred, not hunger, not homelessness, not bullying threats, not backstabbing.None of this fazes us because Jesus loves us. I'm absolutely convinced that nothing—nothing living or dead, angelic or demonic, today or tomorrow, high or low, thinkable or unthinkable—absolutely nothing can get between us and God's love because of the way that Jesus our Master has embraced us." Romans 8:35-39 (MSG)

Tossing. Turning.
On familiar sheets
Beneath the weight of a warm duvet
and common thoughts.

How can I rest?
Belong?
How can I rise and protest
beneath the weight of complacency and weariness?

Hiding. Seeking.
On common ground.
Beneath the weight of frailty
and unanswered prayer.

When will you help?
Uplift?
How can I live
beneath the weight of weakness and pain? 

Searching. Crying.
On neglected pages.
Beneath the weight of hoplessness
and escalated fear.

Never will you leave me.

Your love will always:
seek me
find me
sustain me
remind me
keep me
heal me
fill me

I am never alone


  

Health Update- Appointment Set!

   Let me begin by saying that God loves you radically. I say that because I have been to the bottom and back again and he has never left me. Some of you reading this may not believe in God and that's okay. I know that at some point in time you will experience an answered prayer, a change of circumstance, or a miracle that will plant hope in your heart. He will reveal himself in some way. Maybe just for now you can see him revealed in my answered prayer, the change of my circumstance, and the miracle that has unfolded in my life.

   You all know that I've been praying for three years straight to be well again. I would love to say that I woke up this morning renewed and am feeling 100% as I write this. That isn't the case, but hope has taken root in my heart and I realize that healing may not be God's plan with my illness. For the first year of my illness I blamed God. The second year I ignored God. This year I have sought God with all of my heart. Through the realization that God didn't cause this illness I now have my head above water and am breathing with purpose again. Depression has knocked me down a few times and so has the sense of hopelessness that sometimes snuggles up to me at night.

   Upon moving here I did get a diagnosis which relieved a lot of stress. However, the thankfulness wore off quickly once I started experiencing the onset of newer and scarier symptoms. The emotional course that an illness can take you on can be really treacherous. I've been filled with hope, faith, and a will to live. Equally as much I have been filled with fear, self-hate, and complacency.  The past three months have been a fight between darkness and light. One minute I have felt hopeful that I will get more answers and the right treatment. The next minute I have been in tears that my health may never be fully understood, diagnosed, or treated.   

    God does place compasses on every corner of our lives, though. People aid as a compass to point us back to him--back to hope and a future. Family acts as a compass to point us back to our very roots--who we are and a judgement-free safe haven. Community acts as a compass to bring us to a destination of stability and purpose. I have been off course and redirected so many times through this process that it's a wonder I am still in one piece.

    Today, my impatience (I like to sugarcoat it by calling it "determination") got the best of me. After three weeks of waiting I couldn't stand it any longer. I picked up the phone and called Johns Hopkins to inquire about the status of my application. The lady on the other end of the phone couldn't have been any nicer or patient with me. While I was on hold I prayed with everything in me. The woman came back on the phone and said that the doctors have consulted over my medical records and would like to see me in October! I took the appointments right away and was so filled with joy when she explained each appointment to me. I will be meeting with a total of four specialists and each appointment will last two hours! The appointments span over two days (October 23rd and 24th). The thought of having a two hour appointment makes me so happy. Doctors will take the time to listen, test, diagnose, and come up with treatment plans.

    For every difficult day behind me and for each one ahead-- because they will come-- I have to say that I am thankful despite them. Along the way I am growing in faith and learning more about God's love. I would like to grow in a different way--a way that doesn't leave me in bed and exhausted, but the lessons learned are worth it despite the circumstances. I may not be this optimistic tomorrow, but that's to be expected. I'm finding that hope isn't always packaged beautifully like we would want. Sometimes hope is bare, raw, and ridiculously hard to hold onto. I'm thankful that I have a God that holds onto me even when I let go of him.

   

Broken bleeds into whole

Yellow sinks into orange
and hushes over the horizon.

A mute peace beckons
darkness to come.

I lie down again
to drift into restful sleep
I dream of waking in a body
that is healthy
Filled with fresh breath and
untouched lush tissue

Restored.
Whole.
New.

I awake with the sun
and roll over like yesterday.

I breathe like yesterday.

I ache like yesterday.

Creation has changed
from moonlight to orange glow
but I remain the same
Aches and pains envelop me
and thoughts remind me
That I am broken

Am I not his creation?
How can the sun be so perfect?
Oranges bleed into reds
reds illuminate and run into shades of yellow

And yet I remain the same shade of gray
Recycled air and limbs that rebel
He cares for even the sparrow
That sits on my window sill
and beckons me with its song

I am smaller than the sparrow
My heart darker than his feathers
and yet my needs are met
My clothes embrace me
The air enters my lungs then leaves again
my stomach is full
my heart beats to the rhythm of divine provision

This body is a shell to what lies inside
A spirit full of life
Talents of worth
But even the sun must rest like me
 its vibrant colors are snuffed out at night
but return beautifully the next morning

I rest on my bed
And stare at the sparrow
He reminds me that I am never alone 

Juicing Day Two- The End

      We were supposed to do a three day fast. Shortly after writing the blog last night I fell off the wagon. No, I jumped off. My body began to "shut down". Although I had had MANY nutrients through the juicing, I began to get dizzy and shaky on top of already feeling those symptoms on a regular basis when I do eat. I ate a chicken breast to get some protein and called it quits on the fast. I felt really bad about quitting, but I felt much better once I ate.

      Matt juiced yesterday morning through this afternoon and then had to eat because he has to work tonight. He really was a champ through the whole thing and had a lot of discipline as I ate my chicken right in front of him. Trust me, I don't like sharing my "failure" with you. I had great expectations for the fast and even bigger ones in sharing it with all of you. I just couldn't do it physically.

 Here are the recipes that Matt continued with last night through this afternoon:

1 Green Apple
2 cups Spinach (~3 handfuls)
2 cups Kale leaves (~6-8 leaves)
1/2 Cucumber
1/2 Lemon

Freshly squeezed grapefruit juice (I had it, too! Yummy!)

         Matt plans to do a full 3 day fast later this month and I may give it another try after consulting my doctor and getting my health in a more manageable state.

        We're continuing to make fresh juices daily, but we will be enjoying them alongside meals. I can't tell how how fresh the juices taste and how vibrant the colors are! It really is refreshing and makes me feel that I'm treating my body with kindness. Juicers are pricey, but you just have to look at it as an investment. If you have health issues I would highly recommend getting one and giving it a try.

         I am choosing to go gluten-free in addition to juicing because I have heard that it helps combat fatigue and cognitive problems. Matt is also going gluten-free in hopes that it will help with his digestive issues. He has also going dairy free to see if he possibly has a lactose intolerance. I will not be joining him on that side of the diet because I love my Greek yogurt and cheese!

        If you have a juicer, but haven't used it in a while--go dig it out and dust it off--it wants to give you some nutritious lovin'. If you have thought of buying one before, but haven't, it's worth setting aside $10 here and there to save up for one.

       So, there you have it. I won't be dedicating much more of my blog to our dietary changes, but I will post an update this time next month to share any progress we have made.

Juicing Day 1

I want food!

     Matt and I began our juicing fast today. Why are we doing this?! Ok, back to what I was saying. We began the fast this morning and will continue through Sunday. We may lengthen the fast after day 3, but this is our test run. Why are we doing this?!

     As I write this Matt is lying on the couch with a mega headache and I'm doing my best to hold my head up. Oh, and I must mention I'm extremely irritable. I want food! After drinking two meals and two snacks so far today I just want a big gigantic piece of pizza (thin crust, banana peppers and extra cheese to be exact.) I slept today after drinking my weight in carrot juice and dreamed of soup beans and cornbread (a meal I don't even eat--my body is so desperate that it's kicking it back to my childhood).

What we've had today:

Breakfast: *My body readily accepted this in hopes of getting a bagel chaser*

3 organic Carrots
2 organic Apples
1 small piece of Ginger

Mid-afternoon snack: *Still hoping for that bagel...*

1 Cucmber
4 Celery Stalks
2 Apples
6-8 leaves Kale
1/2 Lemon
1tbsp. Ginger

Lunch: *BAGEL! Ok, lady, I hate you...*

4 Plum Tomatos
1 large Cucucmber
2 stalks Celery
1 Red Bell Pepper
1/4 small Red Onion
2 cups Parsley, leaves and stems, roughly chopped and
packed into the measuring cup
1 Lime

Snack: * *$@#! *

2 apples
handful of blackberries

        Why are we doing this?! They do say that the first day is the worst. Both Matt and I are already experiencing the withdraws of sugar, caffeine, and carbs. I have felt hungry all day, but the juices do fill my stomach up. I know I'm also getting more nutrients from the fruits and veggies than I do in a  regular day. Actually, I probably haven't had such a potent helping of fruits and veggies like this in my life! Our research has really gone into this and it's going to be worth it in the end. That doesn't mean that I won't dream about a cupcake tonight (chocolate with coffee icing to be exact--oh, and don't forget the sprinkles!)   

I'm Famous! Well, my autoimmune disease is...

     So, I've been talking about this thing called Sjogren's  (pronounced Show-grins...does it make me grin? No!) for about 7 months. Recently, I explained that the disease is something that can look drastically different from patient to patient. The symptoms are vast and also vary in severity. No matter on which "level" Sjogren's affects a person, in a nutshell it's a pain and a major disruption to "normal" life.

     Yesterday, I had one of those days. My emotions were all over the place as I reflected on the "me I used to be". I used to be full of energy and be in excellent health. When I first met my husband I told him, "I never get sick.". Well, the irony in me saying that is almost laughable because a year later I got terribly ill. Thank God for him, though, because he has seen me through every bit of heartache and challenge that Sjogren's has poured into our lives. So, I basically sat around yesterday crying and feeling hopeless. Of course saying it like that makes me sound like a depressed piece of work, but it truly was a hard day for me. Being sick doesn't just affect the body. It reaches into your spirit as well. I allowed myself the time to grieve and this morning I woke up with a new sense of hope and determination.

     In the midst of my pity party last night I watched a documentary called Fat, Sick, and Nearly Dead (that does sound like a film someone in my state of mind would watch, doesn't it?). The film basically explains the benefits of juicing and doing a juice cleanse. The man in the film has an autoimmune disease that became easier to manage without the use of medications once he began juicing fresh fruits and veggies. I was impressed. This morning, I got Matt on board with me in hopes that juicing will benefit him, too and put an end the the tummy issues he has had for years.

    Then, this afternoon I remembered that the tennis star--3 time Olympian--Venus Williams suffers from Sjogren's as well. I watched an interview with her and was filled with a bit of motivation. If Sjogren's can bring an all-star athlete to her knees at one point in time then maybe I don't have to be superwoman.

If you'd like to watch the interview here it is:  http://www.youtube.com/watch?v=fsIfOLuCNRM

So, here's what's going to happen...

Matt and I will be doing a 10 day fast.

During the fast we will be drinking freshly juiced fruits & veggies--that's it. These drinks will be in place of meals. No food. No coffee. Nothing. Pretty simple.

I will document our journey each day (don't worry--the posts won't be this long). I will closely note any improvements/changes in my health.

     For those of you that have researched Sjogren's, you will know that it cannot be cured. I choose to look at it this way: if I can do ANYTHING to feel better then I will. Juicing won't solve the problem, but it may improve how I feel from day to day.  That is worth every bit of effort on my part.

Here we go...

Health Update- The Waiting Room

     Baltimore, Maryland is home to The Orioles, The Chesapeake Bay, and one of the world's leading hospitals. Johns Hopkins hospital may be my next hope for healthcare. Over the past month, my health has changed; it has gone in unexpected directions and I have developed new symptoms. In an act of desperation, Matt began some intensive research. Google lead us to Johns Hopkins which has a clinic specifically for Sjogren's Syndrome (SS from here on).

      SS is commonly explained as an autoimmune disease that causes dry eyes and dry mouth. Fatigue may also be a secondary symptom. On Johns Hopkins website, though, we were able to match virtually every "new" symptom I have developed to SS. I was diagnosed with SS in January, but was told by my Rheumy that SS isn't a big deal and that I should be able to lead a perfectly normal life. Imagine my surprise when I began having difficulty concentrating, walking, and eventually suffering from a seizure last month. As I read on JH's website, I learned that most Rheumys are poorly educated on SS because it is A) hard to diagnose and B) not fully understood by medical professionals thus, not properly taught to medical students. SS is actually quiet serious and if left untreated can really cause serious problems in many areas of the body. At first, I found that really intimidating and I was filled with fear. The good news, though, is that I'm finally educating myself on what my body has been going through. That is a first step.

     Upon researching, we found out that JH openly welcomes those suffering with SS to come to their clinic with only a simple referral from their physician! We are only about two hours from Baltimore which makes it a possibility for me to seek help at JH! The doctors review patients' records prior to their visit and set a plan for testing and treatment in place before the patient even arrives. The website also explains that the patient needs to set aside 1-2 days for their appointment. For those of you that are chronically ill or know someone that is then you understand the amazing hope that this offers! I am used to appointments lasting 15 minutes--my vitals are taken, the doctor doesn't make eye contact, and he readily pushes me out the door with an unneeded prescription that I never get filled. A whole day--maybe two--of testing and treatment plans. That's only what I've been wishing for over the past three years!

     I have had my medical records forwarded to JH. Now, I wait. The specialists on board (neurologists, Rheumys, gynecologists, optometrists) will review my records and have the office call me for an appointment. With so many specialists on board, that means that I will virtually be checked from head to toe.We're in the "waiting room" right now living life as usual until we hear back from the office. Please pray that I will be able to make an appointment soon! The love and support that I have been extended over the past three years during this whole ordeal has been an overwhelming blessing. I am gracious.

      If you're in a waiting room of your own right now--whether health or other issues--stay hopeful. If you lose hope, look to those around you to encourage you. The community that supports you is always wider than you think.

Love,
Nikki

A Heap of Memories

    Writing is a gift that you give back to yourself.

    Opening an old journal or manuscript is like unwrapping a prized possession that you didn't know you needed. It's better than finding loose change between the couch cushions or that long-lost left shoe underneath your bed. Re-reading words that once poured freshly from your heart is like watching reruns of your favorite show as a kid. You've seen it and can barely remember exactly how it went, but anticipation leads to remembrance and for a moment you're back there.

     I opened old boxes today that contain almost every piece of writing that I've created since I was 11-years-old. I uncovered scrap pieces of paper shoved into old journals, forgotten manuscripts, and fragments of napkins that I'd scribbled on when I didn't have the luxury of lined paper. The writing spanned from early adolescence spent in the mountains of East Tennessee to pages written as a newly wed on cold winter nights in New Hampshire. Some words were mulled over in English coffee shops and restless nights of homesickness beneath an English night sky. To properly organize everything, I had to read over my past work to put it into the correct drawer. Speed-reading turned into me sitting at our office desk and spending time visiting memory lane.

     I write to be creative, but even more than that I write to express myself. Even in an attempt to be creative, a part of me becomes exposed through characters or story line. The pages that I turned and the things that I read were written by a younger me and in some cases, a healthier me. I also read things that came from a place of desperate longing for hope. I read poems ridden with the heartache of losing my father. Only when I saw it in black ink, was I able to see the immensity of trials I have been through. Overshadowing those trials, though, was the undeniable and inexpressible hope of a life transformed.

I have felt deeply.
I wrote deeply.
I have also healed deeply--from my very soul to the outpouring expression of ink pressed to paper.

      Writing never changed my circumstances, but it did change my perspective. I would say that writing has been a savior to me, but we both know how shallow that would be. Writing, no matter how deeply appreciated or expressed is a temporal thing. Everything I have written could easily be mimicked,burnt up and turned into ash. My hope hasn't come from my self-expression, but from God. He has never left me. I dug through boxes and from one hand-written page to another--in some way or another, God showed himself to me--through sadness, rage, hurt, joy, and sadness.

When I've been afraid He has given me courage.
When I've been lonely He has given me friendship.
When I've been robbed He has restored what was taken.
When I've been hopeless He has given me hope.

       Sometimes it takes time and often doesn't come in the form of all things hoped and longed for. There are times when hope comes in the form of a long forgotten answered prayer. Then, comes remembrance. It may be hidden in boxes, but there will come a day when you open what has been in front of you and you see that all along He was there.

How much for the girl on the right?

     She's young. Twenty-something. Tall. Thin. Small breasts. Wide hips. Long hair. Clear complexion. Virgin.

     Now, how much would you pay for her? Like window shopping at the beginning of the Christmas season, you can find a cheaper priced version of her behind the next window. Adorned like a Christmas tree with immaculate decor and make-up the color of jewel toned wrapping paper. There are no brands. No generic knock-offs. These virgins are a high commodity priced to sell. Untainted like the winter's first snow.

    How much would you pay?

    100 dollars?
   
     63 pounds?

     78     euro?
   
     5,550 rupees ?

   
      She's a talented pianist. Her favorite color is blue--the kind of blue that rests in the sky just before fading into the early seconds of sunset. When given a piece of paper and pen she can write poetry that breathes life back into her soul. She has a little sister that she taught to climb trees. Her dream is to design clothes; she fashions new outfits from old pieces and watches her progress in the mirror with pride. Her nails stay short because she bites them out of habit; she still remembers the sting on top of her hands when her mother would try to smack the habit right out of her. She loves rain and the flowers that it grows. She hates the night--that's when The Darkness comes.

       The Darkness enters her room and consumes her again and again until the light of a new day intervenes and expels The Darkness to leave. Her body is pushed and pulled in any way The Darkness chooses. The Darkness wears many faces--it never looks the same. It may be tall or short, muscular or average, loud or quiet. Its breath smells the same--of lust and recycled staunch air. It reeks. The Darkness finishes invading her and leaves a small currency on the end table as it leaves.

      The Lies are how she ended up where she is. They looked up from the newspaper: Waitress needed. Good pay. Will provide travel, training, and lodging. They spoke to her on the phone, "Yes, we will have someone to meet you at the airport. You will love your new job." They met her at the airport, "We will take you to your new home. Your housemate is eager to meet you." The Lies took her passport, her money, and her freedom. They replaced it all with a numb soul and The Darkness. The Lies let The Darkness in one after the other, only allowing her time to wash herself off and get another condom. She prays for the sun to freeze in the sky--to never set again--that all will be bright and orange forever so The Darkness doesn't return.

      The Lies tell her that her debt is almost paid. A few more times with The Darkness and it all will be over. She know better. The Lies do not know that poetry keeps her alive. They don't feel the old familiar sting of her mother's presence. They do not know how she loves the rain or that her favorite color of blue hangs in the sky above the brothel. The Lies leave no room for The Truth. Through her tired brown eyes she can see that her prison has shrunken to accommodate the deflation of her spirit. In a room so small, there is only room for her and The Darkness. There is no room for light.

     She looks to the sky for The Truth. People must know she is there. They must know about the slavery. How could they not? She sits and wonders, Does The Darkness outshine The Truth? Can The Light expel The Darkness?

She writes:

My soul longs for you
You must know I am here
The privileged people with love to call their own
They hoard it
Hold it
Kiss it and then bury it
Share with me
Rescue me out of The Darkness
Tell me The Truth
The Truth that set you free
I look to the sky 
Where will my help come from?
Give me purpose
Life
Love
Rescue me
Rescue me