My current school of thought.

via pinterest

This will pass...right?

I have been making a desperate attempt to rid myself of a horrible bitter seed that has been firmly planted in my chest and seems to be growing by the minute. Seriously. And I do believe that my appointment with my doctor last month added some serious fertilizer to the nasty seed.

I am working through a lot of really ugly feelings right now. 

I just don't know what to think or feel.

Confused. Scared. Angry. Sad. 

Desperation. I think that is a good descriptive word to use right now.

I had an appointment with my specialist on June 9th. I really left feeling defeated. He said that my POTS was as controlled as it could be. I don't really remember much after that. It just went downhill from there. I had a list of things to discuss and I just became so flustered, I didn't even get to the list. I don't know. It just didn't go well.

Mom and I just cried for the next 13 hours as we drove home. So depressing.

Mom and I both got bronchitis from somewhere (and then proceeded to spread it to our entire household!) and we have both been in the bed and so sick for the last two weeks. So that really took the wind out of our sails.

Because I was so sick when we got home, I didn't really deal with my feelings around the doctor's appointment. So last week, when I started feeling a little better from the bronchitis, I cried a lot. And then I cried some more.

I am trying to figure out a battle plan. (I think that is an appropriate name for it.) I am searching out for doctors that treat Chronic Fatigue Syndrome in the area because I have never really sought a doctor that specializes in that. I have an appointment with a Rheumatologist on July 6th and hopefully I can start being treated for the pain from Fibromyalgia. I also want to look into holistic treatments for fatigue.

I had an appointment this past Wednesday with a GI doctor to try and figure what those horrible spells are that I have. And I just want to say that the appointment gave me HOPE back!! I feel like God heard my prayers, even those I said in anger and sent me a wonderful angel last week. I didn't get to meet the doctor but I saw his nurse practitioner.  Seriously, she restored my faith in the medical profession! She listened to me and asked me detailed questions. And when it was over, she took my hand and promised me that she believed me. She told me she knew these "spells" were truly terrible and we were going to work together and find out what they were. Then she asked if she could pray with me!!
She prayed a beautiful prayer. We asked for God's guidance and patience. My Mom and I were in tears. It was so touching.
She said that she wanted to have a meeting with the doctor and that she would contact me at the end of week and she did! She told me that the they were working on a plan. I just felt so encouraged and CARED for.

Well, as it would happen, I had another spell on Saturday. Yeah, not fun at all. I am still recovering from it. We did go to the ER this time. I was able to get some pain medicine and that helped some. We went to the hospital this time because we hoped if they ran any tests, the doctor could get the results easier.

I am very hopeful that we can find out what happens to me when my stomach hurts so badly.
I am also hoping that this Wednesday's appointment with the Rheumatologist goes as well. We will see. Thank you for your cares and concerns over the last couple of months.

Fighting and Accepting

You fight the takeover of an illness. You don't want to give in. If you give in, then you loose not only yourself but you loose the battle. You can't give in. You have to fight the fight. It is an exhausting fight. You can't fight it alone. You have to have a battalion at your side, ready with swords and spears. Ready to fight to the very end.

The beginning of my diagnosis was at first, a battle of wills. Only one of us, was going to walk out intact. I thought that I would walk away. Perhaps, I would be battered and bruised but I would walk away and into the future. Even the best of generals and fighting men have plans that go awry. And so I fought but I lost. I can say that now. I lost that fight.

I lost moments. I lost friends. I lost myself. 

I remember when I decided to change the battle plan. It was the summer of 2007. Oh, a beautiful summer it was. I felt better that summer. The enemy retreated and I took that opportunity to boldly march forward. I had moment of clarity. I had to change my battle plan. I had been fighting the wrong battle the entire time. Instead of learning to live with my illness, I was trying to force in into retreat. It wasn't going away. Ever.

I had to learn to live and thrive with this unwanted enemy. 

I had to learn to find new moments, new friends and a new self and I would have to learn to take Dysautonomia along with me. 

I couldn't let the enemy win a moment longer.

It was easier to make that decision when I was less symptomatic. It was easier to push on and move forward when I was actually physically able to do so. I am so thankful for that moment. The moment when I decided that I wasn't broken. I was just a different version of myself and that was okay.

It was okay to say, "Hey, I am different. I have to live differently. I have to think differently."

That school of though didn't mean that I was giving in or giving up. Far from it. That was acceptance. 

That was learning to live this  new life.

Now, that is not to say that it is easy. No. This is the most difficult journey. I still have moments when I think, "Gah, what a loser!" 

But learning that acceptance wasn't giving up-that living side by side with the enemy was okay, changed the way I live.

Some days I thrive. Some days, I barely get by. But that is okay too. 

I am okay. I am going to be okay.

miracles in a day

God's controlled energy flowing through me makes it possible to cope. That is God's power too.

-Joni Eareckson Tada

Someone gave me one of Joni's books several years ago and it was so powerful. I don't think you can read Joni's story and not be moved by her testimony for Jesus.

If I read a book and just one line speaks to me, then it is well worth its read! Don't you agree?! When I read the sentence above, my heart just started pounding. I went back and read it again and again. I put the book down and just let those words sink in.

 The ability to cope is a miracle! The ability to have hope is a miracle!

 I had never thought about it quite like that before. God performs a miracle each moment in my life that I can be hopeful. When I realized that, I had an intense moment with God. I was so grateful and I felt so close to Him.

I have faith that at any moment I can be healed. I know that God has the ability and the power. I also know that God has a great plan (as cliche as it may sound).  A plan that I may never know or understand. I know that God works in completely unexpected ways and I do not have to be physically whole for Him to work those miracles. It is a miracle that I have hope.

I am a hopeful, optimistic person. It is something that I thank God for all the time. My hope is no reflection of myself but rather a testament to the power of the Holy Spirit alive in my heart. I easily forget the power that God demonstrates in my life. It is easy to allow myself to overlook His blessings when brushing my teeth is my goal for the day. But I am humbly reminded throughout the day and I am thankful that He wants to take the time to fill me with hope and sustain me for another day.

Today.Yesterday.Tomorrow.

 

"Now when Daniel learned that the decree had been published, he went home to his upstairs room where the windows opened toward Jerusalem. Three times a day he got down on his knees and prayed, giving thanks to his God, just as he had done before."

Daniel 6:10

I love this verse. I am not going to say it has been floating around in my mind for awhile but I just kind of stumbled across it and it kind of stuck with me. God is the same-in times of joy and times of deep sorrow. He is the same. It is me-through my situations-that changes. Sometimes, allowing my heart to hardened towards Him because I am angry and hurt. But throughout the bible we are told to give thanks in every circumstance.

I have been struggling so deeply with where I am at in my life. I find myself trying desperately to bargain my way into a new existence. I catch my mind dwelling on past moments of happiness and I can feel my throat close and my eyes burn with tears.

I thanked God for those happy days.
a beach trip to Seaside with Kim and Kristen.
New Orleans visits.
A trip to Pennsylvania.
School.
School.
Driving.
Another beach trip with friends.
School.

Those were beautiful days. Days of splendor. And those days can be haunting at times; ghosts that lurk and taunt me with what I know life could be like. But mostly those days serve as truly joyous reminders of God's overflowing love and His power to make all things new again.

So, during these dark days that seem to mount and take my breath and my sanity, I am trying very hard to remember to give thanks every day. No matter what kind of day it is.

 

Because God is the same today as He was yesterday.

And I hope that I can be like Daniel and get down on my knees and pray, give thanks to my God, just as I did before.

What the night knows...

The night sky holds my soul's secrets.

I see the moon and the stars' reflection and I am reminded that we serve a mighty God.  A Creator; a purposeful inventor.

During the day, when I am so sick and all I want to do is sleep, the night sky cannot come fast enough. Sleep it seems is the only place that I can find relief. Yet, when all earth begins to close their eyes, I fight it, because, I do not want another day to pass. I don't want another sunrise to awaken this monster inside of me.

I am such a complicated person.

And when I see the moon and the stars, the adrenaline rushes and fills my chest, I cannot help but cry out to God. It is if I have come to the most holy of sanctuaries, His sanctuary. And it is there in the darkness and the stillness that God beckons me. He beckons my fears, my worries, my doubts and my pain. He lets me be angry and he lets me cry. I can tell Him how bad this is and how sad I am. He believes me and he cries with me. 

And the night sky hovers over this conversation said between Father and child and it holds all my soul's secrets.

"Words are merely utterances: noises that stand for feelings, thoughts, and experience. They are symbols. Signs. Insignias. They are not Truth. They are not the real thing."

Neal Donald Walsch

photo from here



Bad Days...boo

 My nurse Carrie came yesterday and I got my weekly IV. I really like Carrie. She is so funny and super, super nice. When she starts my IVs she always gets on her knees and says that she is in "her praying position" and then continues to say that she needs to be in that praying position if she wants to get me on the first stick. Seriously, she makes me laugh. And she is able to get me the first time, now. Just in case in you wanted to know.

The IV hydration isn't helping like it was. It makes me kind of sad. I was getting about two days where I felt better but I don't seem to be getting those two days very much anymore. Maybe it is just the time of year because this is a bad time of year for me. Anyway...

The last few days have been kind of bad. Thank goodness for Zofran (nausea medicine), iPods and Christmas trees! Seriously, I love Christmas trees and I could just stare at mine all day, which basically is what Holly and I do.

And on a totally random sidenote-I heard on the nightly news that it is colder in Florida than in Maine! What?! So much for Glober Warming, I guess.

Merry Christmas!

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}

A "patient" Patient.

I saw a new doctor this past Friday. He was in Atlanta, GA....so much closer that Virginia!!

He was very nice and appreciated the fact that I had my Mom (and main caregiver) come back with me. (Something that not all doctors appreciate.) He didn't have any magic cure or ground breaking news to share but he was kind, honest and understanding....that is all I can ask for.

I was quite relieved that the appointment went well. I don't think that I am going to be able to continue to see my doctor in Virginia. The past few visits have been less than lack-luster and are not making an expensive, 13 hour trip very sensible at this point. So, needless to say, I am in desperate need of a doctor. We will see if this new doctor fits the bill until then I have hope in this new doctor-patient relationship.

I appreciated this doctor's honesty. Unfortunately, there is really nothing that he or anyone else can do for me right now. I just have to wait. Wait for my body to try and figure itself out and heal on its own. I know from the past, that this is possible but it is so hard to wait and not be able to be "fixed".

In other news, my friend Kristen and I are doing a bible study together via email. We realized that we were using the same devotional, Streams in the Desert. Kristen suggested that we do it together. I am so glad she did. We only started a few days ago but already I feel so blessed by our daily emails and prayers together.

I thought this was cute. Holly joins me during quiet time. :) And please excuse her appreance! She is in need of a good face washing and brushing!

"Hope is patiently waiting expectantly for the intangible to become reality."
Avery Miller

summer crush

"The Lord is close to the brokenhearted

and saves those who are crushed in spirit."

Psalm 34:18

hello friends.

two months? that was my last post? where has time gone? where has the summer gone?

the last few weeks have been difficult, to say the least. each time i feel that i am making progress, something comes along and wipes me off my feet...sometimes, literally!

three weeks ago, i had such a terrible spell that i had to go to the hospital. it was one of the worst ones in 12 years. my sister ( a nurse) could only get a systolic pressure of 50 and only a faint pulse. she said that with a number that low she didn't attempt to get the diastolic. there are about 30-45 minutes that i have hardly any memory of. it was very bad and so very scary for us all.

before my previous spell in may, i was working on a post explaining these "spells" and dysautonomia in general. i haven't been able to finish it yet. you all are so supportive though and take me at my word and encourage me despite my lack of information and explanation.

i have so much i want to share-both good and bad. i have stayed away from blogging because i have been so empty that i could find the strength or energy to share anything.

this particular verse that i included really sums up how i feel. this summer was supposed to be better and it wasn't. i am supposed to be better and i am not. my friends are making important life decisions and i am not apart of them. i feel left behind. i feel alone. i feel crushed. my heart hurts. it is a physical pain-a constant ache for a taste of life.

crushed dreams. crushed hopes. crushed spirit. harsh reality.

it is a bitter pill to swallow.

thank you so much for reaching out to me over the last weeks. your kindness has meant the world. please forgive my neglect. i hope to re-connect soon.

Hurricane Season

Hurricane season begins tomorrow. The seas will roar and the wind will howl. Fear sets in and people go to far extremes to survive.

My hurricane season began two years ago. My Dysautonomia symptoms began to come to the surface once again and they have yet to go away. My life has been tossed and thrown. My dreams damaged and weathered. My heart has been battered and bruised. There have been many, many days that I can't seem to find the sun. Yet, eventually I will glimpse it through the clouds. This hurricane has been bringing me and my family to the brink. I have been waiting for it to pass-but so far, to no avail.

I had a terrible episode two weeks ago. These particular episodes are still a mystery to doctors and I must be honest when I say, they are the most painful and terrifying hours of my life. They last for 2 to 3 hours and they leave me my body physically devastated. I am usually not so dramatic but there are no words to describe what occurs to me during these episodes and how devastating the aftermath is.

I have not been out of bed in two weeks. I am rarely online. I don't watch TV. I can't eat at the table. I can't sit in a recliner and carry on a conversation. I can’t care for myself at this time. I wake up and all I want is for night to come again so that I can go back to sleep and escape this pain, weakness and discomfort.

Despite how difficult this has been and how uncomfortable I am, I truly feel that God is at work. I feel His presence and His calling. I know He is at work. I want to prepare my heart and my soul for His plan. I know He has one. I know this is not vain. He is working on me. I know this with every part of my being.

"When peace, like a river, attendeth my way,

When sorrows like sea billows roll;

Whatever my lot, Thou has taught me to say,

It is well, it is well, with my soul.

It is well, with my soul,

It is well, it is well, with my soul."

-Horatio Spafford

It really is well with my soul.

photo from here

Waiting and Wishing.

"So don't worry about tomorrow. Tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:34

Good day all.
You know what? Sometimes, well a lot of times, I find that when I sign in to my blog, I become speechless. It is a strange phenomenon. I am such a talker. So much so, that I get on my own nerves from time to time. So, I just start typing what is in my head and sometimes an off-handed topic will spill onto the computer screen.
Kind of like right now.
I am tired today. For no reason in particular; I am just tired. I am actually happy to be lying in my bed and I can't seem to imagine being anywhere else. I just want to curl up and pull the covers over my head and wait until tomorrow to see if anything will happen because today is just an average day.
The weather was gorgeous here this weekend. Absolutely gorgeous. I know if I had drove down to University campus there would have been girls who reached into the back of their closets and pulled out tiny shorts and thin sundresses and if I had seen those girls, I would have made fun of them-I am not going to lie! (It is still February after all.)
I miss driving. I miss the pure and perfect independence that driving brings to me. I absolutely can close my eyes and I see myself bouncing down the front steps, all dressed, with curled hair and my make-up on. I happily look up into the sun and pull my sunglasses down and then check my purse to make sure that I have my cell phone and keys. I go and plop down in my car's front seat and turn the radio on and make my way to Target, Hobby Lobby or SCHOOL!
When I do that for the first time -when I walk down those steps and go turn my car's ignition on-after months of seeing my car out in the driveway, catching leaves and dust from the previous months, I know that I have made it out of dark, once again. I made it through this round of the battle. To drive myself somewhere for the first time is like being 16 all over again. It is exhilarating and freeing. Pure, inhibited joy. No worries or fatigue. No fainting or nausea. No migraines. And despite how much I love my parents, no parents. It is amazing.
To drive my car for the first time, will mean that soon I will return to school and to my social life. I will return to my "normalcy". I can begin joyfully living "part-time" as I call it.
I do not focus on the past or worry about the future. I don't dwell on the things that I have lost over the last months. I make small, single stepped plans for that day and maybe the next. To drive is to be independent and that is a beautiful thing. I can't wait for that day to return and I know it will.

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.

Learning a little each day.

Lessons. Part 1.

Being sick over the last decade has taught me a lot. Some of the things are silly and others are practical, while some lessons are life changing. If there is one thing that I can say about being sick it is that God has used each day to teach me something about myself, Him or the world around me.

Lesson 1
Lemons and Lemonade

“When life gives you lemons, make lemonade... and if you aren’t able to make the lemonade yourself, God does an awesome job!"

God makes the best lemonade! ha! And He can make it with some pretty rotten lemons, let me tell ya! There are so many stories (some that I hope to share) where God has brought wonderful people into my life or he has allowed me to experience once in lifetime moments. My family has grown so close. I have met the most beautiful souls over the years, who have been living examples of how to live with an illness and still have grace and dignity. I have been blessed by wonderful health care workers, including my counselor, Kelly. Who, has I have said before, was a huge influence on my career choice. God has such big plans for me and He can make them all work with my rotten lemons...Dysautonomia.

{photo from here}

Lesson 2

Being in a wheelchair can have its "perks" at times! ha!

Yes, you read that right. Aside from the obvious of being able to park right next to the door, with the wheelchair, I can wear any kind of shoe that I want! Three-inch heels; who cares?! A beautiful pair rubs my ankles; no big deal! Sitting-and not walking-allows me to indulge in my favorite accessories-shoes! Also, not walking allows me to keep my feet in great shape! When I go get a pedicure, the ladies are always speaking in their native language and they all come over and look at my feet. They pick them up and rub them, point to them, etc. So, finally one day, I asked, "What are you saying about me?" She said, "Oh, beautiful feet! So clean! How you keep so clean?!" Mom and I just laughed. See? I told you some lessons were silly!

"How beautiful are the feet of those who bring good news..."-Isaiah 52:7

Lesson 3

Hold on to happy memories. Make lots of happy memories!

I think this has been one of my greatest realizations-make and keep dear all the happy memories that you can. I have talked about how important I think this is to do previously. Keep them stored in a safe place deep in your heart and you use them on a really rainy day. The happy moments that you hold dear don’t have to be grand; they can be anything that even for a split second made you smile and made your heart flood with joy. When I am especially down and feeling bad, I unlock that door of happy memories and allow them to fill me. In an instant, I am "self-medicated" with smells and sensations from a wonderful moment that may have only lasted seconds but years later is helping me heal.

more to come but lets end this post right! ha!

love always. Heather & Holly

hello again, world.

Hello Friends!

No, I haven't completely disappreared...close to it though! Lots of bad days lately but I know that I will see good ones again! I just wish that better days were here already...

Holly keeps me company and keeps me busy! ha! She has learned to "sit". Yay! We are working on "down". She is pretty stubborn and isn't fond of the down position AT ALL! We are starting puppy classes next Friday. I am soooo excited. The classes will last for 8 weeks. I signed up for the ones at PetSmart. They were super helpful and so nice! They don't mind that someone joins me (just in case I faint). They also said that working with Holly in the wheelchair wouldn't be a problem and we could teach her to walk on her leash beside the chair. How cool?! I am really excited about going, just in case you couldn't tell!

Anyway, as usual, I am behind on "life" in general. I get excited to actually get my hair washed these days! I miss your blogs and I hope to try and start getting online and visiting at least one a day and maybe catch up! I also have emails, facebook messages and my sweet Polyvore friends to contact...I am trying, I promise!

Speaking of Polyvore, remember what they did for me for Christmas. ( I still cry when I think or talk about it!) \Well, here it is on me before a doctor's appointment. What do you guys think?!

Just one more photo of Holly.

She is so stingy with her toys! When she changes her mind about what toy she wants to play with, she tries to lay on the other one so I can't get it! I think the Dog Whisperer would disapprove but it makes me laugh!

Not a lot going on.

Hello everyone. It is freezing here in Alabama. We, Southerners don't know what to do with ourselves when it is this cold. Holly and I have been in bed, watching movies and listening to my iPod. (All bundled up, of course.)

There is not a lot new on the health front. Just waiting....and waiting...and waiting...

I haven't been out of the house in 2 weeks! ah! I have cabin fever! Tomorrow, I have a doctor's appointment and then Mom and I are going to try and run a couple of errands. I know I will be super tired when I get back home but I don't even care! I am just so excited to be getting dressed and seeing the world again! Ha!

Here is a photo that I took of Holly, last night. Isn't she cute? She is so fuzzy!

And just for the record this is my goal for the year of 2010...

It is to return to school. There are no words to describe how much I miss being in class. I just want to go back so badly! I think about it every single day. I hope that before the year is over, I am once again, a student at the University of Alabama! 

I wrap quite a deal of self-satisfaction and self-esteem in attending school. When I am in school, I feel a little less "different", a little less defeated. School represents that I am doing "good" on the health front and I feel in control. When I am not in school, it seems to take away from who I am as a successful and productive person. But I remember this verse,

"...God does not take away life, instead, He devises ways so that banished people will not remain estranged from him."

2 Samuel 14:14

I try to remember that when I am feeling down.

{image from here}

Friends are delightful.

My friend, Jerica stopped by my house today. I didn’t take any pictures because I wasn’t feeling well, I was in my pajamas and I looked pretty rough! I did take a picture of what she brought me.

This is a unique take on "re-gifting"! I gave this to Jerica when we were 11. I am not sure what the occasion was but I know I gave it to her only a few months after the car accident and Jerica was the greatest friend there ever could be to me during that time. I can say, without a doubt that God used her greatly in my life. I wrote the little poem on the poster. It says:

"My Best Friend is wild and crazy

Well spoken and never lazy.

She’s to the rescue when I call.

She makes sure I never fall.

She's there through good and bad,

thick and thin.

And we will always be best friends."

Jerica has held on to this after all these years. She said that it always makes her smile when she looks at it and hoped that it would make me smile during this tough time.

Jerica is just one of those friends that no matter how long we have not seen one another, we just pick right up where we left off. (We haven’t seen each other since August of 2008!)

I have known Jerica since I was 4. She really is a great friend and a great person. She is a true woman of God and I admire her greatly.

Here are a few photos of the two of us during happier times!

New Orleans 2006

 

August 2007

A little impromptu dancing in the Cheesecake Factory parking lot...always memorable.

Summer 2006

Jerica’s Wedding Day! Since we were 4 years old we planned on putting flowers in one another’s hair on our big day. The flowers were quite as elaborate as our 4 year-old selves had planned but this was a 20-year moment in the making. I will cherish this memory forever.

The Beautiful Bride. My Beautiful Friend.

Thanks for coming by Jerica. I am glad that we both know that we are praying for one another! And thank you for my trip down memory lane! love ya!

Are you blessed to have a friend like Jerica? I hope so!

Love. Heather

Remember everyone! I want your address so that I can send you a Christmas card! For more information, read this post!

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!

On the floor with me.

"But the needy will not always be forgotten, nor the hope of the afflicted ever perish."

Psalm 9:18

Hi everyone. I hope you all had really nice weeks and that you all have great weekends! I am kind of bummed about the weather here in Alabama. It has been in the high 70's all week & that is just not fun! It is November and I am ready to wear my pretty sweaters and winter shoes. You know? Oh, well, that is Sweet Home Alabama for ya!

On the health front, things are pretty bad. I haven't been this sick in a long time; a really long time. It makes me sad but at the same time I am kind of too sick to care right now. I am fainting a lot! (Never, never good.) I have fainted 4 days this week. It is kind of scary because even though I have fainted off and on for at least 10 years now, I always had warning signs before and could get to a safe place and lay down. For the past year, I have been fainting without warning. The fainting subsided for several months but it has come back with a vengeance over the last two weeks.

I think we may go see my specialist in Washington, DC again. It is strange though because part of me doesn't want to go. The past 3 times that I have been, I return home and still haven't improved. I told Mom that I just didn't want the disappointment of traveling so far and being so sick from traveling and being away from home and once again, nothings helps. Ah! Frustration!

I must say though, my family is just seriously beyond words, amazing. I think the best way to explain how wonderful my family is to me, is to share a story with you. (Don't worry, it is short.)

I have fainted two weekends in a row now. This past Saturday I was going to my room and I was holding a drink and I just *BANG* fell on the floor. Apparently my cup and drink went flinging down the hall, covering the walls and ceiling. Oh, the drama I create! ha! After I regained consciousness and started becoming a little bit more aware of my surroundings, I looked down the hall and there was each one of my family members; my mom, dad, sister and aunt. They were all sitting in the hall, legs crossed, waiting for me to wake up. When I did, my aunt looked at me and said,

"Well, you were on the floor. So we all got on the floor with you."

And that my friends is the beauty and really the reality of how wonderful my family is. My aunt had no idea that she voiced an unspoken truth about the Thomas family. When I am sick, we are all sick. When I am happy, my family is over the moon for me. When I am in the trenches, my family is there fighting each day with me and sometimes fighting for me, when I can't. My family gets on the floor with me and stays there until I can come up again.

I am so blessed. God knew my path. He knew the road ahead and He sent me these amazing individuals that are daily example of God's love and mercy. They are my rock. They are my breath. They are my family.

Christmas Morning 2007