a light in the dark

I have been struggling lately. I wake up with knots in my stomach and go to bed with them still lingering. I begrudgingly accepted this illness. It is a daily battle of acceptance and fear. Is there a middle ground? Is there a place where my hope of being better and my dreams of the future can meet my current circumstance and make sense? Do I give up my dreams? Do I find new goals? Goals that seem obtainable. It is confusing. It is frustrating.

I want to return to college.

I want to graduate.

I want to marry.

I want a family.

So many days make me wonder if any of this possible.
Can I do any of these things? Can I ever leave home? Can I ever take care of myself? Honestly, I don't know. That scares me. The thought of living like this forever scares me.
Sometimes, I am afraid. I am so afraid that these precious prayers won't be answered. What if the things I want so badly are not going to possible for me.
How do I plan a future from bed?

I am afraid that God has other plans. I want to change His mind. I don't want His will if it doesn't include what I consider life. I want His plan to be my plan. 

I try to remember God has my loving Father. That Christ suffered too and that He has great compassion but often I feel alone and isolated and I think of God as distant deity sitting on a cloud, far, far away. I wish I could say I feel Him right here, with each step but I don't feel Him. I call myself looking but I feel abandoned. I feel betrayed by God.

I feel alone in the dark without a light.

Right now my only light is hope. I am clinging to God's promises of hope and healing with all that is in me. I am clinging to His promises of faithful love and never ending compassion.
I feel alone but I know that I am not alone. My emotions are deceiving. His truth is forever.  

So Far Away

{Warning} Proceed at your own risk.

Well, It seems as though I have abandoned ship and left my blog all to its lonesome. The truth is that I have come to this page and began typing so many times but end with a blank page and a smudged delete key.

I have been sad. So sad and deeply depressed. More so than I have ever been in many years.. I haven't been able to bring myself to type the self-absorbed and putrid words that swirl through my head.

There is a battle within me that I must be happy... I must be hopeful... I must not be bitter... BUT...

sometimes I am miserable and hopelessness is all I feel and bitterness has become a foul taste in my mouth lately.

This blog is called, Prescription of Hope. Can I post here when I am so far from hope that I don't know how to take my next breath? Can I plunge into the abyss and cover this page when nothing but my deepest and darkest fears?

Depression is a terrible thing on so many levels.

I was so overwhelmed two weeks ago that I fell to my knees in tears and just sobbed to God. My words were jumbled and incoherent. It was such an honest prayer, though. I needed God to show Himself to me; despite that I have been running so far away from Him. I needed to be reminded that He loves me and that He is not doing this to me. (Despite what the horrid voice of depression seems to scream daily.)

I think sometimes I treat my prayers as though I am shaking one of those Magic 8 Balls and with one eye open and my fingers crossed, wondering if God is in a good enough mood to answer my prayer. How screwed up is that?!

Everywhere has become a sad place. There seems to be no safe harbor. No place to run and hide and make it all go away. Facebook has become an evil place! (Just kidding...sort of.) I rarely get on anymore because all I see are people getting married and having babies. And what makes me sad is my reaction. I am not happy for them. I am jealous. I am angry. But what I really am is wounded and hurt. I am just tired of missing out and watching from the sidelines.

{image from here}

less is NOT more

My Mom and I were talking in the car the other day on the way home. Somehow, high school reunions came up in conversation. My 10 year high school reunion will be next May. Gosh, what a lifetime ago high school was. This wasn't the first time that a high school reunion has come up in a conversation. It also was not the first time that I had adamantly refused to attend. Friends (even 3 or 4 years ago) seemed so anxious and excited about this future date that a group of adults meet up and reminise over bad hair days, horrible teachers and compare notes on what is going on in their current lives.

My Mom asked me why I didn't want to go.

It was simple. What am I supposed to show up with? What I am supposed to say that I have been doing for the last ten years?

I am diplomaless.
I am jobless.
I am husbandless (make that boyfriendless too).
I am childless.
Oh, lets top this all off and add that I still live at home with my parents.
Wow, now that is impressive.


That list scares me. That list terrifies me to my inner core. Is that who I am? Is that that what I have become?


Ten years has gone by...what do I have to show for it? Not much.


I wrestle daily with the feeling that I am a loser. That I am a nobody. I am a loser because I have nothing to show for my life. I have no accomplishments to speak of-no job, home or family. I haven't done something. I have become someone. That is how I feel; like a loser, a nobody.


Dysautonomia has taken so many things from me. It has taken time, dreams and memories. It has also slowly chipped away at my self-esteem and my feelings of acomplishement. It is hard to explain to people that sometimes it is a huge accomplishment that I took a bath or washed my hair. It may be an accomplishment to have had dinner at the table instead of in bed. And somedays it is simple an accomplishment to make it through the day and still have my sanity in tact.


I am so embarrassed that I haven't finished college yet. I am even more embarrassed when I am not able to go to school. When people ask me about school and I tell them that I am a psychology major. They naturally assume that if I am still in school at my age, then I must be in Graduate School. I don't correct them. Sometimes people assume that if I am in school part-time that it must be because I am working. Again, I don't tell them the truth. I am terrified that they too, will think that I am a nobody.

I don't have the confidence to say, "No, I am not healthy enough to take more than one class right now." "No, I don't live on my own. I live with my parents because of health issues."

I know that I didn't choose this way of life but it is hard to explain that. Whether I chose it or not, after 10 years, I am still trying to grasp it.
I don't want to feel like a burden but I do. I don't want to think that I am a loser but I do. I don't want to feel broken but I do.

The King of love my Shepherd is,

Whose goodness faileth never;

I lack nothing if I am His

And He is mine forever.

~Henry William Baker

I am Yours, Father. Thank you.

{photo from here}

Down.

When I open up on my blog and in turn, open up my heart, to let my emotions and my world spill out before me, I try to find a level place to begin from. Just like this horrible disorder, Dysautonomia, I too have ups and downs emotionally. But I think it is true to say that basically, even though this whole situation sucks (and I hate that word!), Jesus and hope are my anchor. My beliefs, my feelings, my outlook are anchored in His teachings and His promises. That being said there are days that I am in fact, 'Debbie Downer' as my friend Alex calls it. But Alex also pointed out that sometimes, there is in fact no news but bad news. She had a point. And that is where I am right now.

To try and explain how I am feeling physically at the moment, I must go back a little and give you a brief history. I may describe some things that are unpleasant. It isn't meant to shock anyone or disgust you; I am just trying to provide an accurate account.

On Sunday, October 8, 1998, I woke up in the middle of the night with severe stomach pains. They were overwhelming. I had never experienced such pain. I couldn't lay still; I could stand up. I paced the floor. The pains were stabbing and seemed to go through my stomach and into my back. After a few hours of stomach pains, dry heaves and very little vomiting. The pain only intensified and I began to feel very strange. I was becoming confused. I couldn't speak in clear sentences and I was camped out on the bathroom floor. Then all of sudden I felt the urge to use the bathroom and when I did, something happened to my body. I went limp while sitting on the toilet. My parents had to take care of my personal needs and they carried me back to bed. When I regained consciousness, I felt like I was dying. I began begging my parents not to let me die. My parents, not knowing what was going on, quickly took me to Children's Hospital.

My blood pressure was extremely low and I was in shock. The doctors were a little dumbfounded. They didn't know what was wrong or what had happened. I was admitted to the hospital and I was tested for Addison’s disease. They had come to believe that perhaps I had suffered from an Adisonian Crisis. After 5 days in the hospital and many tests, the doctors were pretty sure that Addison’s disease was the reason for this particular spell as well as my preceding health issues like fainting and fatigue. However, a week after I was discharged, the results from many blood tests were in and it turned out that I did not have Addison’s disease. And from that point, I was sent to a cardiologist who diagnosed me with POTS, a particular form of Dysautnomia.

Now, that story is important because once Addison’s Disease was ruled out, the episode that landed me in the Special Care Unit at Children's was not looked into any further. It was assumed that it was a one time occurrence and had been caused by a sudden drop in blood pressure because of the Dysautonomia. But...that was not the case.

For 7 years, I had one of those spells, once a year. They happened the same exact way, every single time. They occurred between the months of October and December. They began between 2am and 4am in the morning and lasted anywhere from 4 to 6 hours. A peculiar symptom that also accompanied these spells was a HUGE burst of energy during the day, prior to the spell at night.

In about 2005, the spells moved a few months. They began occurring between March and April and were exactly the same. We continued to seek for medical experts and their opinions but no one could (or has) been able to give us an answer.

Since 2007, these spells have lost their timelines. They now happen any time of year and multiple times a year. This is the type of spell that I had on Christmas day and I had another one on Saturday. Saturday's spell was one of the worst in several years.

Besides the fact that it is absolutely humiliating to allow my parents to see me in such a way and to take care of such a basic and personal need, these spells terrify me to no end. I feel like I am dying. I can feel my whole body shutting down. There are not words to describe it.

But these spells don't just take my dignity, comfort or safety for a few hours one night and then it is over. No. They ravage my body and somehow I have to fight my way out of a very dark and very deep hole.

I haven't been out of bed, except to go to the bathroom since Sunday morning. I eat in bed, I brush my teeth in bed, I even sponge bathe in bed. I am so tired my eyes hurt. The noise from the television is too taxing. I lay in darkness and I am fine with that. I am not bored or lonely. I am so tired. I try to sleep. My days and nights are one in the same. And all I can think is that one day that has passed is one day closer to feeling better again.

I didn't mean for this post to be so dreary but I suppose I am just dreary, right now. And I know that I say I am not feeling well so very often and I get tired of saying it.

There are so many things that I want to be doing, seeing, experiencing and once again, I am left waiting.

Rough weekend.

Hello friends. I hope that you all had pleasant weekend.

As I am sure you gathered from my post's title, my weekend was a little rough. Beginning Friday night, I fainted 4 times over the weekend and two of the times was while I was laying down in my bed...not good, really, really not good.

I know that bad times come with this illness but no matter how much I "know" they are coming, I am never prepared for the bad time's "arrival". I am constantly reminding myself that this is just bad time and that it too will pass because the bad times always do but in the meantime, I have to wait. And while I am waiting, life is going on. Oh, I am so frustrated.

Another thing is that I feel very distant and far away from God. I don't feel Him. I read once that it is much easier to say when we know God is nearby and it is much tougher to acknowledge when you feel alone. I admit it. Right now, I feel alone. I feel forsaken. I feel like God has turned is back and is busy helping others and has forgotten me. God! Don't forget me! Come back and feel my heart with You! I can't feel You. I can't hear You.

i feel alone. i feel like there is an anchor pulling me away from God and I can't get back to Him. i want to find Him again. i am struggling against a current and i want God to rescue me.

It is for certain, we are going to Washington, DC to see my doctor. My appointment in on November 30. I dread the trip with everything in me. I know how physically difficult the trip will be and after all the effort, I don't know if my appointment will be helpful. Frustration! Pure Frustration!

something tells me i am not forgotten. something tells me i am loved.

. by *Heather Thomas on Polyvore.com

A Face in the Crowd.

This is my first post in what I hope will become a series regular on my blog, A Face in the Crowd. A Face in the Crowd will highlight an individual who is facing a struggle of their own and facing it with hope, strength & determination. As I have said so many times, our struggles are unique but our feelings and emotions are universal. A Face in the Crowd is meant to make us all think about the stranger in line at the market or the person across from us at the movie theater. We really never know what they are going through.

"Although the world is full of suffering, it is also full of overcoming it."

-Helen Keller

My first interview is with my very dear friend Kelly. Kelly and I met 5 years ago in Arizona at a camp for young adults with chronic or fatal illnesses. Kelly is one of the most beautiful people you will ever meet. She is compassionate and genuine. We have been fortunate enough to visit one another since our time in Arizona and I do hope we will see one another again very soon. Until that time, I am honored that she allowed me to interview her and share her sweetness and hopefulness with you!

Kelly would you tell the readers where you are from and how old you are. Kelly, 22, PA

What is the name of your illness(es)? Alagille Syndrome (AGS) - a very rare (only 1 in 100,000 live births) genetic disease that affects my liver, heart, bones, eyes, blood vessels, skin, facial features, and growth. I also have Chiari I Malformation, Hypothyroidism, Anxiety, and Mild Depression.

When were you diagnosed? I was diagnosed with AGS at 3 months old after my first surgery, a liver biopsy. I was diagnosed with Chiari at age 10 after a routine MRI. I was diagnosed with Hypothyroidism at 20 after way too many months of testing and doctors that wouldn’t listen. And just a few months ago I was officially diagnosed with Anxiety and Mild Depression.

What adjustments have you had to make in your life because of your illness(es)? I really haven’t made too many adjustments since, for the mot part, I was born like this and it’s all I’ve ever known. I have had to make some adjustments to my activity level and amount of standing/walking I do in the past few years due to heart and Chiari problems.

Do ever feel mis-understood (at any level or with any situation) because of your illness(es)? Sometimes it’s hard to deal with people thinking that either nothing is wrong with me - I'm just small and short or (if they do know) that I never deal with anything unless I'm in the hospital – neither of which is true.

Have you ever had a distinct moment, where you felt God’s hand in the journey of dealing with your illness(es)? I have always known that God is with me, especially before and after surgeries. I have a new thing (my last three or so surgeries) that I have fallen asleep on the operating table praying. It’s just a way that I have found to calm myself down and give me extra comfort in the last moments before surgery. Also, during my last inpatient stay, which was completely out of the blue and resulted in emergency surgery, I really felt God’s presence. When I was admitted I was in the most pain I had ever been in and then did not have the smoothest of stays. The timing was awful! I had less than two weeks left in college and had a ton of stress with that and other things on my mind. But, the timing was also perfect, because it was God’s plan. My favorite surgeon and the only one I will let touch me just happened to be on (not – God’s timing)! He is on maybe one weekend a month and he was there and did my surgery that Saturday afternoon. In the end, school, stress, surgery, and everything else worked out. Always try your very best to have faith and patience! Timing is everything and everything happens for a reason!

Is there a factor (i.e., faith, family love, hope, etc.) that helps you cope with the struggles of being chronically ill? I get most of my support from God, I always try to keep the faith and have patience. I know this is God’s plan for my life and He created me this way for a reason. My friends and family are also there for me.

What are your dreams? My ultimate dream (career-wise) is to work at the hospital that I grew up going to. It’s kind of like a second home and I can’t imagine working anywhere else! I also want to get married and adopt at least one child from a foreign country.

Is there a quote or scripture that you turn to when you are feeling down? "I can do everything through him who gives me strength." Philippians 4:13"We can not change our circumstances but we can ask God to change our attitude toward them. When we cast our cares into His sea of love, He changes not our situation but the way it affects us." ~author unknown

Are there any final thoughts you would like to share? Just a few things that having a chronic illness has taught me: I know its cliche, but don't judge a book by its cover! You never know what people may have going on with them by just looking! For example, some people are unable to walk long distances and have to use a wheelchair at times because of it - if you were to see a person in that situation, you would probably say/think "he/she is young and healthy – he/she shouldn't be in a wheelchair – he/she is just being lazy!" Please, think before you speak!

Do you have a website that you would like to share with the readers for more information about you and your journey? Sure, if you’d like to get more background and detail about me and/or follow my progress you can visit my medical website: www.caringbridge.org/visit/kelly1 If you choose to leave a message in my Guestbook, please let me know you found me from Heather’s blog : )

Kelly, thank you so much. I love you and admire you so much. Thank you for being my first, Face in the Crowd!

I am still.

"Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The Egyptians you see today you will never see again. 14 The LORD will fight for you; you need only to be still."

Exodus 14:13-14

As I have said in a previous post, the Lord is asking me to be still. He is using my quiet surroundings to mold me, to refine me. I cry out to Him and He continues to point me to the way of stillness. After Kelly asked me to turn to God and seek Him during this time of heavy grieving and mourning, His voice seems to be more clear than I have heard in years. I am still. My heart can hear Him now.

I am very sad. I am very lonely. I am fighting tears and anger with each moment. My cry to God is that He takes THIS away. I want a break, God. Just one moment during my day when I am not tired, when I am not sick to my stomach, when my joints do not hurt, when I do not have a migraine. I don't want to recover from eating breakfast at the table. I don't want to rest after I take a shower. I don't want to have to lay in my bed in dark silence because I am simply too tired and too weak to open my eyes. God! Take this away! That is what my heart screams. .

So, I am still. I have tried hard to not turn away from God but turn to Him. (Which, I will say, has not always been the case in the past.) God answers my cries with "Be still."

He first asked me to Be Still in my counselor, Kelly's office several weeks ago.

Then earlier this week, I started a new devotional, Streams in the Desert. Each devotion is dated, and I began with October 26. My first devotion was focused on the scripture from Matthew 14:23, "After he had dismissed them, He went up on a mountainside by himself to pray. When evening came, He was there alone...". Again, God showed me that even Christ was alone. Even Christ had to Be Still.

And today, God reminded me a third time, that for whatever reason, this is a time for me to Be Still. I keep a journal beside my bed and when I come across a piece of scripture I write it down in my journal. When I need to be replenished in the word of the Lord, I can get my journal and find a verse that usually comforts me. Today, I was flipping through my journal and I stopped on the page with the verse found in Exodus. "The Lord will fight for you; you need only to BE STILL."

The verse from Exodus really seem to finally convince my mind what my heart already knew. I need to be still for however long God needs me to be so that His power, grace and mercy can work in my life. I have cried so hard this week. I have cried alone and with my family. I have cried out to God out of pure desperation. My tears this week have been because I am tired of fighting this fight. It always seems to win. I never feel like I can get ahead. So, when God showed me this verse today, not only was I remind once again to be still but I was reminded that I am not in this battle alone. He is fighting my illness for me.

Be still.

"Be still and know that I am God."

-Psalm 46:10

After being sick for several years, my illness may not be predictable but my pattern of grief is. I am very fortunate that my parents were wise enough to know that I needed to learn to deal with being sick, early on. I have been seeing the most wonderful and compassionate Christian counselor, Kelly for over 10 years now. I don't have to go to her on a continuous basis. In fact, sometimes, it may be a couple of years and I don't go at all but there are other times when I go for long periods of time and I need her to listen and encourage. She is a huge reason for my choosing to become a Licensed Professional Counselor.

Everyone grieves differently. Every one's grief has a different time line. As I said, with the help of my wonderful family and Kelly, my grief pattern is very predictable. Because being sick is such a roller coaster and I may go months and be relatively symptom free and live "part-time" as I like to call it, when my Dysautonomia begins to take over my life again, it is almost a shock. The entire time I was doing my "part-time living", I never think about when this will all come storming back into my life and when it does, I go into shut down mode, both physically and mentally. Part of that is because I am sick and part of that is because my mind cannot take the overwhelming task of processing the loss and the difficult road that is ahead.

Once I come out of the numb state I enter my present state, depression. I am so blessed because I don't stay here long. But I do my fair share of crying, asking why and feeling alone. After a few weeks of depression, I enter a state of anger. I am angry at everyone. I am angry at God because He did this. I am angry at my parents because I have to depend on them to take care of the most personal of needs. I am angry at my sister because she works and has a boyfriend. I am angry at the world!

And then one day, I wake up and it is a new day and God says, "Hello, Heather, welcome back!" And I think, "I can do this, can't I God? You will help me." That is hope talking.

So my pattern of grief is like a triangle. With depression and anger at the bottom, feeding one another and hope being at the top and always being the end product. {Thank you Lord.}

So, I wrote all of that to say that Kelly pointed that God can use my depression and speak to me in the depths as well. When I am depressed, I push family and friends away. I build a high, protective wall and curl up safely behind it. I take myself out of the world that I can no longer participate in. It hurts less when I don't know what I am missing. Kelly said to me last week while we were discussing this bad coping mechanism that I have developed over the years, "Heather, you have to ask God what He is trying to tell you during the silence. Why does He want things quiet?" Her statement just keeps replaying in my head over and over again, like a broken tape. Then, I read the verse Psalm 46:10. "Be still and know that I AM GOD."

Maybe God is using my bad coping mechanism of pushing people and the world away by stepping in the place of those things and forcing me to realize that He and He alone is in charge of my life and destiny.

{I love my sweet Father. Even though, I don't understand what He is doing most of the time.}

{Photo from here.}

A headache a day makes for a terrible outlook.

"i'm so DIZZY. my head is spinning. like a whirlwind it NEVER ends!"

lyrics to a song. not sure which one. but mom always sings it when i feel bad. it is appropriate and makes me smile. :)

where i am.

where i want to be.

the university of alabama. it is truly beautiful in the fall. my prayer is that God restores my health and i will be able to return vey soon.

Roll Tide!