Six Months Later...

Hello dearest Friends! 

I'm still here and I'm still doing wonderfully well!

I am so happy to say that!

Six months since my last post. I have sooo many things to share! All VERY wonderful things! God's blessings continue to pour over me and wash me through and through. I have been thinking about my blog a lot lately. My blog is about hope; an anchor, a tool, an ointment, a promise. How can I leave my blog when I feel like so many of my dear friends prayed for me during my journey? My journey is far from over. I feel like I am just beginning in many ways. (So many ways!) I want to share hope from the other side too; not just from bed but from this great and wonderful world that I am able to live in now. I want to shout, "This is my God and this is what HE has done!" 

This summer was wonderful. I traveled constantly! Oh, such great joys!!

New Orleans, LA, Austin, Texas, Ft. Wayne, Indiana, Panama City, FL, San Francisco, CA
 

Or as I like to call it, "The Heather Thomas Celebration Tour"!!

 

Beignets at Cafe du Monde in New Orleans. I have always loved New Orleans but I decided during this trip that I love New Orleans during the day! The crazy people come out at night and it's just a different city. New Orleans in the day is magnificent! (You know because I am such an authority on travel and all.)

My best friend Kim and her roommate Jimmy. My travel companions to New Orleans and Austin. This was our only photo of the 3 of us during our entire trip. 

 

At my favorite restaurant in Austin, Shady Grove. It was yummy.

 See? Yummy!

Visiting Alex in Indiana!!! Alex and I met several years ago in Arizona and we haven't seen one another since then. It has been about 7 years! It was soooo wonderful to see her and meet her wonderful family!

She is one of my favorite people-ever! I always joked with Alex that she would be the first stop on "The Heather Thomas Celebration Tour". She was the second stop! :)

Beautiful beach trip with friends! 

 

 The first time I have had a tan in about 10 years!!

And the trip of all trips this Summer was a trip to San Francisco to visit the Polyvore team! Y'all it was amazing!! Just amazing!

.

 At the airport. On my way! 

My hotel, The Valencia. It was jaw dropping

The famed, Santana Row. Just amazing.

At the Polyvore luncheon with Nadia and Jess.

The Polyvore Office!!! Soooo exciting to see in person!

The Polyvore Staff is truly amazing!! I can't say that enough. Polyvore has encouraged me so much over the years. It is a wonderful community and I am so proud to be a member. They sent me a beautiful Christmas present about 3 years ago because they read one of my blog posts! Not only did they bring a group of us to San Fransisco and treat us like queens but they also gave us a truly outrageous goody bag full of fantastic treats that only Polyvore could pull together! It was an honor and a wonderful to end the Summer!

 "Those who sow with tears
    will reap with songs of joy.

Those who go out weeping,
    carrying seed to sow,
will return with songs of joy,
    carrying sheaves with them"

Psalm 126: 5-6

I have so much more to share. But it will have to wait. This is much too long as it is. 

So much more good news to come!

 

Never Giving Up

I stared this post on Sunday evening and it started like this...

"I think it is okay to call last week a rough week. Unfortunately, no good news this week.Well, I take that back. There is always a little good news. Sometimes, I just have to dig deep to find it."

 

source

Well, I am glad that I didn't have the energy to finish because yesterday (Monday) was a GREAT day!  My GI doctor has yet to come to the bottom of my problems, despite is thorough evaluations and tests.

I went to the ER twice over the weekend with those same horrible spells! (Are y'all tired of seeing that word yet?!) My visit Sunday was terrible. It was my 7th visit since July and it was suggested that my pain was due to a Psychiatric problem. My Mom and I were devastated. When you have something that people don't understand and you know that it is in fact, VERY real and VERY painful...to be told that it is in "your head" is so painful to the spirit. It cracks it a little bit and it takes a while for that feeling to heal. 

I received a call yesterday from the office of a respected Pelvic Pain Specialist that they had a last minute cancellation and they needed me there in an hour. Now, keep in mind that:

1. I live 40 minutes from his office and 2. I was still in my PJ's!  3. I had to get there because my original appointment wasn't until January.

Somehow, someway we got there in time!

You guys, this doctor was amazing. Everything you could ask for in a doctor, this man was. He was kind, understanding, compassionate, honest and most importantly he validated my frustration and how painful these spells are.

 

After spending over an hour with him, we decided to precede with a laparoscopic procedure. He wants to get inside my abdomen and try and find what is causing my problem-whether it be scar tissue from my previous surgeries after the car accident or something like endometriosis. Normally, the procedure would be done through or around the naval but because my incision from my 3 previous surgeries is right next to my naval, a two inch incision will be made under my left rib cage. I will be in the hospital overnight for pain management and evaluation. 

He did warn me that with so many previous surgeries that this was a risky procedure for me. He said that there was a much higher risk of injury to my intestines (again from previous surgeries and the possibility that large amounts of scar tissue will be present). He also told me that there was a 20% to 50% chance that there would be too much scar tissue present and an organ would be damaged and they would have to call in a general surgeon to open my old scar and repair any damage. That does scare me a little but I honestly don't think that will happen. I feel that I am in very good hands.  

 

The doctor told me that these issues were most certainly not in my head and he honestly didn't know what was wrong but he felt there were big pieces of a puzzle missing and we could get some answers through this procedure. And I completely agree with him.

He told me the procedure could be as early as next week or as far away as next month. So, I don't have a date but I will be sure to update when I know a definite day.

I want to thank you all again so very much, from the bottom of my heart, for your prayers and love. I know that during this time, the Lord will hear prayers on my behalf, and I thank you.

 

Thank you for taking this journey with me. Thank you for believing me and encouraging me. Thank you for loving me.

a little of this and that

Oh, where to begin...well I have been back to the ER but I must tell you that I am glad I went. It was just a "God thing". The ER doctor was so nice. I was doubled over in pain and crying and he patted me on the back and said that he had read over my records and had seen that I had just been hospitalized and had a lot of tests done but that they had all come back normal. He said, obviously we -the doctors-are missing something here.

Then he looked at me and said, "Would you like me to keep searching for you?" I just started sobbing even harder. It was so kind. I felt like someone wanted to fight with me. He didn't find anything in the ER that night but he did give me the name of Pelvic Pain specialist that treats, "difficult cases". 

I really feel God had this planned. I am praying that this new specialist will see something that others have yet too see. I don't have an appointment with him until January but his office said there are cancellations all the time and I probably wouldn't have to wait that long. However, I am not in a rush to see him right away because I want the GI doctor to be able to complete all of his tests.

Speaking of the GI doctor, I go this Wednesday for a colonoscopy. I don't dread the actually procedure...just the day before while I prepare! Ick! I am a little nervous that all of the medicines that I will take to cleanse my intestines may provoke a spell. So, I am a little nervous about that. 

I have been struggling a little emotionally. Just the wear and tear of dealing with the unknown and also the fact that once again, it is time for school to begin and I have been unable to enroll. That always is a difficult thing for me. I want to return to school so badly. But I am encouraged daily by the lovely messages and prayers that are sent my way from friends and strangers alike. It is so touching to know that so many are loving me through prayer. Can there be a better way to show love for someone? I think not.

 source

In other news, I have been Gluten Free (GF) for six weeks. I have know about Gluten Fee living for about ten years because we have a family friend that has Celiac Disease.  Mom and her friends have little luncheons and small parties for our group of family friends, so my Mom has cooked a little gluten free food for the last several years. So, it was not as hard to make the change to GF since I was a little familiar with it. There are actually a lot of positive things about being GF! One is that I get to make a couple of trips to Whole Food! Love that place!! We go a couple of times a month. I just love going in there. I also get home made, fresh baked bread each week. And lastly but maybe most importantly, I can feel a little proactive in my battle against feeling so crummy!

Another thing that I am doing -nutrition wise- for treating my POTS, Fibromyalgia & Chronic Fatigue is that I am avoiding aspartame like the plague. That hasn't been too difficult except for the fact that I LOVE Fresca! Ah! That is just heavenly fizz in a can! And it made with aspartame, so no more for me. I am however getting a lot more water these days! So that is good.

I am still not able to go a lot of places. Mom and I did make small errand run last week. (The day that I went to the ER actually.) I am not up and about in the house like I would like to be. I still eat some meals in bed. But I am able to be online and I have been on Polyvore a lot lately! That is always a step in the right direction.

Thank you for your prayers, encouragement and love. I can't say it enough. Thank you. Thank you.

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.

an answer in the dark

Last week, I shared how alone I felt. How far away God felt. Mostly, I think I felt alone because I don't understand why God hasn't answered my desperate pleas for healing. I found myself saying, Well if God really is there and He really does love me, then He will heal me.

I knew that really wasn't true but that it what kept coming up in my prayers and in my heart. I felt betrayed somehow. I felt like God didn't care.

But fortunately, I was very, very wrong.

God heard my cries of confusion and loneliness and He spoke to me in a mighty way. 

The same day that I posted my deep feelings of pain, my daily devotional focused on verses Matthew 7:9-11 & Luke 11:11-13. 

If my earthly parents give me what I ask then how much more will my Heavenly Father give to me when I ask?

The final paragraph said this:

Would you be willing to stop pounding on heaven's door, to stop begging for God to give you what you believe is best and to open your hands to receive the good gifts your heavenly Father wants to give you?

In that moment, I just had to stop and praise God. My heart was pounding and my eyes had filled with the tears. He had heard me and now he was answering me!

For whatever reason, God is saying not right now to me. Right now is not the time for college, or a relationship or a family. Right now is not the time for a complete healing.
Right now is the time for me to seek the good gifts of God-whatever they may be and remember every day that His gifts are far better than I can ever know.

Now, I would love to say that this revelation of simple Godly wisdom would keep fears at bay and that my heart will always be content with God's plan but I know it isn't that simple for me. There will be times (more than I would like to admit to) that I know I will once again question God and his love for me.

But now, I have this moment. This moment of open communication between a Father and daughter and I can remind myself of how I felt in that precious moment and hopefully my heart will remember the peace of God's love too.

To know that God heard my cries for help and to know that He answered me is pretty overwhelming. I am just in awe of his power and of his love. I am in awe of His faithful love and unending compassion.

Because he loves me, says the Lord, I will rescue him. I will protect him, for he acknowledges my name. He will cry out for me and I will answer him. I will be with him in trouble. I will deliver him and honor him. 

Psalm 91:14-15

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.  

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.

Christmas Time is Here

With Christmas all around, I can't help but be reminded of how fast the time has passed. Any holiday-but especially Christmas-has a way of bringing me and the passage of time face to face in a showdown... and time wins each time. I don't want to be sad or cry but I do because it is quite hard. This is such a happy time of year but it is also another year and one more Christmas that is passing and I am still sick.

I will never get the last 10 Christmases (or years) back. They slipped away so quickly. I have missed out on so much and it hurts my heart. The hurt has just invaded and I am working hard on letting go. There is so much that I want to do and I don’t know if I will be able to. I have so many dreams that I don’t want to give up on but I don’t know I will ever live out those dreams.

Christmas is indeed a very special time of year. Christmas gives us all the opportunity to be thankful for all that has happened in our lives- both good and bad.

Most importantly, Christmas reminds me to be hopeful for all that I know will come.

Here and There

I think this post from last year, pretty much sums up how I feel right now.

However, this year, I am currently not having daily headaches and for that, I am so very thankful!

Basically I am here (here, being my bed) and I want to be there, (there being anywhere but here!).

I am trying daily to remind myself of what I am thankful for. I talk out loud and try to convince myself that today is going to be okay. But days are not okay here lately.

Here is not okay with me. This is not okay! I just want to feel better. How many times have I said that before on this blog? A lot! I just want to feel better.

Here are the things that I am thankful for!

my family. :)

Holly! Especially when she wakes up from a nap and comes up from the cover to greet me.

And I am also thankful that I have nice, warm bed to be sick in. Not everyone has that.

Friends

Books

Music

my iPod

the internet

my internet friends

i am also pretty excited but the upcoming fall weather!

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

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

the calm after the storm.

"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."
Psalm 42:11

Yes, I have posted a total of 4 times this month! I am on roll! (Please note the sarcastic tone that is behind that comment!) I feel behind on life in general. My to-do list is growing not shrinking and my procrastination is off the charts...blah...blah...blah!

Saturday, our weather was terrible. This is always a bad time of year for the Southeast-weather wise. It rained and stormed something fierce yesterday. It was dark and dreary. Lightening danced all day and the thunder was quick to answer back. But Sunday was beautiful.

It was heavenly. Truly. The was a slight breeze and the birds were singing and the bees, buzzing. The sun was warm and bright and the sky was a crystal, clear shade of blue. The grass was bright green and there was no pollen in sight. It was gorgeous.

The beauty after a storm. It is a beautiful gift from our Maker.

I couldn't help but think how after every storm that has ever shaken my life there is always great beauty and an overwhelming sense of peace that follows.

Every heartache is followed by mending.
Every tear of sadness is quickly out numbered by laughter.
And every memory lost is replaced by joy.

He is the ultimate and contanst healer.

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.

Chronically Ill & Hope from Above-my life

I discovered Kelly's blog through my friend Rachel. Each friday she allows her readers to participate in a weekly post, called "Show Us Your Life". I have never participated before but I have enjoyed reading others' entries. This week was about your testimony for the Lord. I felt led to to share. I submitted a link to a post that I wrote back in October. It was written during a time when I was feeling completely humbled and emotionally drained. It is an honest and open post about my ups and down with the emotional side of livng with Dysautonomia.

Lessons of Love

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.”

1 Corinthians 13: 4-8

Unconditional is uncircumstantial.

Okay, I don't think uncircumstantial is really a word but I think you get what I mean.

Uncondtional love knows no boundaries, circumstances or situations. It is just present in your life; regardless of what you are or what you have done-or not done, Love is all consuming and all encompassing. I have learned that.

My family loves me when I am being mean and angry at the world (they may not like me at that moment, though!). They love me when I am feeling good and make promises to them that I 'forget' about when I get tired and put their needs aside. They love me when I don't love myself. They love me when I become so wrapped up in myself and my needs that I become a horribly, selfish human being.

My family loves me enough to lay beside me on the floor until I wake up. They love me enough to take care of very personal needs when I cannot. They love me.  I love them so much it hurts.

Love is given to me in ways that can't explain its beginning or end. It has been my experience that love is quite tangible. It is tangible in the sense that it overtakes the soul and rushes the heart with warmth and security. It floods my mind with reminders of engulfing hugs and tears we shed together. I wish I could explain my feelings in a more sophisticated fashion but the perfect words seems to escape me.

This disorder, Dysautonomia, is such an unloveable disease-in every sense. It is so easy to hate and despise. Dysautonomia reaches out and taints everything about me and my world. No matter how hard I try to keep me and my disorder seperate, we come together and are one. Somehow-even when I cannot-my family is able to seperate the two. They manage to hate what the disorder has done but not hate me in the process (an accomplishment that I cannot claim to do).

We are just an ordinary family. We falter every day and we make mistakes and hurt each other but I think it is the fact that we can come back to beginning basis of any family, love, and that is what is remembered.

"No sin is so great but the satisfaction of Christ and His mercies are greater; it is beyond comparison. Fathers and mothers in tenderest affections are but beams and trains to lead us upwards to the infinite mercy of God in Christ." -Richard Sibbes

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.

My Daily Rescue Kit...of sorts.

Well, here it is, everthing that is currently getting me through my day (minus my heating pad and rice wrap). Of course, my darling mascot and ring leader, Holly is first on the list. She and I are really bonding and she is learning, once that heating pad comes out, it is quiet time! Have I said that I loved her? Yeah, I didn't think so!

Next, would have to be Teddy. Teddy and I have been through a lot together. He is slowly falling apart but I can't bear the thought of giving him up. Stained, threadbare and all-I still love Teddy; even if I am nearly 27 years old! ha!

I love my journal. It isn't so much a journal as it is my own quick, personalized reference guide for favorite verses and quotes. Anytime I come across a bible verse or quote that I like, I write it in that journal. I use it has a reference a lot. I am so glad that I started doing that. When I need a "pick-me-up", I have hundreds at my fingertips.

Of course, there is my big bag of medicines. Pills...I have pills for everything. I really wouldn't mind so much if I felt like they were helping. Oh well, I faith that God will heal and they will start to help me soon.

Netflix! Ah! Greatest thing...EVER! Seriously, I can't wait for Mondays and Thursdays...those are my Netflix delivery days. (I tend to rent movies that I have seen before because I want to be sure that I enjoy them!)

Last but certainly not least is my iPod. I think I may be addicted to that little gadget. I listen to it all the time. It has seen better days. When I have headaches (which have been numerous and horriffic lately) the only thing that I can handle is some soft, comforting music. I think it is almost time for a new one. The battery won't even last 10 hours, these days! Oh, but how I love my iPod!

I must say, having a bad migraine isn't so bad when my sweet puppy curls up under my chin like that! Now, I have reason to look forward to them...umm, not really but I think you get what I am saying. If I am going to have a bad headache, this is the way to do it: with a sweet puppy sleeping next to you.

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