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.

another week. another spell.

The fear that I have had for 13 years, that these spells would get worse and really take me for a turn has come true. And it is as awful as I imagined in my darkest moments.

Since last July, I have had 15 of them. That is more that I have had in the last 13 years combined. It is horrifying and they are slowly taking over my thoughts, my decisions and my happy moments. 

In a cruel twist of fate, a sign that a spell is imminent is that I have a surge of energy that is masked as a good day. Now even my good days are bittersweet because I am terrified of what the will bring.

Is this the night? Is another one going to happen?

  It has become a nasty, viscous cycle that is far beyond my control.

I had to go back to the hospital this week. Not a pleasant trip. 

This was the fourth attack of the month. 

And can I just say how completely unpleasant ER doctors are. My sister is in the medical profession and I understand that they have so many patients that need them at the same time that I do but still-treat me with respect. I am not a moron. I am at their mercy and deserve the same courtesy that they would give to a stranger outside of the hospital.

Just sayin'!

The GI doctor is no closer to the solving this puzzle. I have -because of my many trips to the ER this month- met every doctor in the practice! ha! They all seem very nice and Christ centered. 

I just had a small bowel series done on Friday. I had to drink yucky barium  (2 cups..ick!!) and they took X-Rays as it made its ways to my small bowel. I won't get the official results until this week but the kind X-Ray told me things looked good. 

I do have a colonoscopy scheduled for the 17th. I am NOT looking forward to that. Well, I am not looking forward to the preparation anyway! 

The doctor really thinks there may be some scar tissue from previous abdominal surgeries that could be causing some of the my stomach problems. We shall see.

And now for an honest and sad confession...

I try to be honest on my blog. I try to be transparent and share all that encompasses being sick-whether it is physical, emotional or spiritual. And sometimes my truth is not very pretty.

I have found that bitter seed growing at Olympic speed. I find it more and more difficult to go to God as my loving Father. I feel anger towards Him. I feel coldness and resentment. I want Him to make this all go away this instant! I think about Job and how he lost everything and still thanked God-not only thanked God but fell to His knees in utter humbly praise and prayer. 

I think of Job and wonder how he was able to do that. 

I try at the end of each to thank God for at least one thing from my day but these last few weeks our conversations do not go beyond that. 

I am embarrassed to admit that horrible fact but it is true. 

I am trying to find my way back to Him and I hope that is an important first step. I do know that He is waiting for me.

Much love-

A Hospital Recap

I was so happy to come home last week! Little Holly was pretty excited to see me too! She has been so clingy since I got home. She doesn't let me out of her sight. It is so sweet.

My family sent me these beautiful flowers while I was in the hospital. Everyone that came in my room commented on how beautiful they were. I was glad that they were still so beautiful when I brought them home. Today is the first day that they have started to wilt. 

Okay, so I guess this all began last Saturday night. We decided after I went to see the GI doctor that anytime my stomach starts to hurt, we were going to pack up and head to the ER. The doctor on Saturday night was very nice and gave me Zofran for nausea and something for pain. It did help and the pain seemed to be better when we left but I think the pain medicine just delayed the inevitable because the pain returned Sunday evening and we found ourselves headed back to the ER. I had another doctor and he too was equally as nice and gave me something for pain and nausea. The pain didn't get better. It was terrible. Mom said that I was not quite myself and I fainting 7 or 8 times while I was laying down in the ER.
After a couple of hours, the doctor came in and told us that my white count was up to 18,000. A normal white count is about 10,000. He told us that he was concerned because that was a very high WBC, saying that people with pneumonia had a WBC of 15,000 and since I had been to the ER 3 times this month, severe pain and such a high WBC, I needed to be admitted. I have to admit I was a little relieved because I was still so sick. 

I was in terrible pain until about 9:30 am on Monday when I got terribly  sick. After that my pain seemed to ease a little bit.

The doctor that was in charge of my case at the hospital was very thorough. I had tests run all week. Lots of tests! Everything came back completely normal except for one test. An MRI of my Pitituary Gland. It did show some "thickenining" on the back side of the gland. I will need to see an Endocrinologist to make sure all of my hormone levels are fine but it isn't anything that I have to worry about. I will just have to have periodic MRIs and blood tests to make sure everything is okay.

But they didn't find anything that would suggest what these "spells" are that I have. I was so glad that all of tests came back good but I really do want an answer. I was hoping they would find something to explain these horrible episodes that I have.

The GI doctor called Friday and told me that some blood work they had drawn had come back negative. They did a particular test for a disorder called Hereditary Angioedema ( HAE) and I was hoping that would come back positive because these "spells" fit that disorder entirely. I was very disappointed. I had pinned my hopes on that test coming back as positive.

I have a follow up appointment with the GI doctor this Wednesday. I am hoping to discuss some further tests and options for treatment.

Thank you all so much for your continued prayers and support. I feel like a broken record-but they really do mean so much to me. Your kindness and compassion really does my heart such good.
Thank you so much.

Think Happy Thoughts

Over the last month, each day has seemed to be a battle of wills. Each day has been hard and quite difficult emotionally and physically. There were several days that I just watched the clock slowly tick through the day and I couldn't wait for the sun to set and soon I could go to sleep and completely escape for the night. I am not going to lie; it has been hard.

There have been days that I have taken to wearing granny sunglasses in the house and even talking was too much exertion. The television stayed turned off and my laptop was hardly on. My world got so small. 

It hurt my heart. I just wanted to be anywhere but here.

And sometimes all I could do to get through the next few moments was to

Think {very} Happy Thoughts!

It was like a moment from Peter Pan. If I thought long enough and hard enough, I drifted away from the terrible moment. I could momentarily be anywhere but where I was.

Call it denial or just pure crazy...it sometimes worked.

• I thought about the roses that I knew were blooming outside.
• I remembered a beach trip with friends and climbing over a fence to get into a new subdivision's pool that wasn't open yet.
• I thought about the beautiful architecture in New Orleans.
• I went through each first day of school from K-5 and tried to remember what I wore the first day of school. (I did good! I could remember every year but 2!)
• I remembered the butterflies from my high school crush.
• I thought about cheer leading and the year that our football team went to the Play Offs.
• I thought about family vacations to the beach and to Disney World.

I am optimistic person but I am also realistic. I think you can be both. My situation is so hard and so painful but my life is also full of such beautiful, happy moments.

Life is hard. It is really hard, a lot of the time. I firmly believe that we have spectacularly, beautiful moments that may only last a second so that when we face dark times, we have something to hang on to and so we can be reminded of joy that is surely around the corner.

Each day I am trying my best to think happy thoughts!

plans meet reality

"Many are the plans of man's heart but it is the Lord's purpose will prevail."

Proverbs 19:21

This is the verse that I memorized for the Siesta Scripture Memory Team  . I find myself repeating it out loud all through out the day.

I just turned 28 and I have said before, while celebrating birthdays and other important holidays, I cannot help but linger for a moment on the sadness that such time has passed by.

I thought 28 was so old. I thought that I would be married and possibly have a child. Graduating college wasn't on the list of possibilities; it was a given. And of course I would be working. What else would I be doing?  I would be living on my own and in my own home.
I would be nearly 30, after all.
Who still lives with their parents at the age? ...gasps...

These weren't goals. They were my plans.  It was my road map for becoming an adult.
It is what you did. It is what everyone did.

I wish that I could say that in all of the years that have passed and in my struggles to have my reality and my dreams meet somewhere in the middle, that I had a found a new definition for myself and what makes me valuable and what makes me worthy. But I haven't. I still find it difficult to not measure who I am with the person that I think that I should be.
And let me tell you. I do not measure up.

No matter what the reason, I am terrified to my core that I have still not finished college, or met someone special or moved out of my parents' home.

What kind of person am I?
The answer is, I don't know.

I try to reconcile with my old self and my old plans but they never meet. Never seem to fit.

I catch myself to talking to God, angrily. Demanding that He change all this. Begging him to give me my dreams back. I scream that I don't want His plan; I want my own plans. I must digress to His greatness.

It is a moment by moment struggle. These last few weeks have been so hard. I shudder when I think that I have spent most of April in the bed with the blinds pulled tight.
Time is slipping further and further away and my heart hurts for what I want for myself and what I feel God has just left me with.

Take a Breath...

First of all, please know that your each of your kind, kind words warmed my heart and soul. Please know that I am so thankful for your prayers and your love. Overwhelming love is what I feel when you say such loving prayers on my behalf.

Thank you.

To say that this past week has been difficult would be an understatement. It has been darn hard. A doozey of giant proportions. I have taken to wearing sunglasses in the house because I am so weak, my eyes just hurt. No television and I am eating meals in bed. No sleep and headaches. 

I am able to listen to my iPod as long as it is turned down low. (So happy about that!) 

I am indulging myself in audio books right now. I have read (listened) to some great ones!

 My sweet Hay (Haley) comes to visit me each night and little Holly has been the sweetest puppy ever.

Lots of tears have been shed this week. I have my Mom keep reminding me that everything will get better. I just feel so defeated.

Everything just hurts.

My heart hurts the most.

It is spring and it is beautiful. I want to be able to see spring unfold.

I have so many things that I want to share. So many things and I know that I will but like so many things, it isn't exactly as I planned. I just have to wait a little while longer.

I can't wait to answer the questions you guys asked me. They were such fun to read.

And share my new camera...it is a beauty.

And tell all about my birthday party. It was so beautiful and full of love.

I have a playlist on my iPod called Hope.

This song is my current anthem.

 

I don't what I would do without my precious family. 

They are precious souls. I am so glad that we were given to one another.

Hopefully, I will "see" you all soon! :)

Much love!

I am behind on life.

The story of my life. I am behind.

I am having a horrid bout with insomnia right now. My days and night are completely crazy. I really do, absolutely, positively HATE not sleeping. It throws everything off and makes me feel so bad. Ugh.

 Holly is sleeping just fine!

I have to-do lists - phone calls that I need to make, emails that I need to return, blogs that I need to visit, cards that I need to write. Yeah, none of that is happening right now.
I have good intentions but I can't seem to make them happen. Hopefully, I will start sleeping again in a few days. That is what I am hoping for, anyway.

I do have my 5th Siesta verse ready though.

Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.

Jeremiah 33:6

Where have the days gone? Time goes by so fast. Too fast sometimes. I am still feeling pretty crummy but my sleep seems to be back on track (YES!) and I ate supper at the table last night which is such a huge deal for me when I am feeling bad! That is two major improvements in just a few days. I am very happy about that.

I am kind of bummed because I only took 1 photo last week for Project Life. I am not beating myself up though because I just have to take things as they come. Hopefully, I will do better this week.

I have been listening to this song a lot. It really speaks to me. 

Are there songs that you like to listen to when you are feeling down in the dumps? I would love to know what they are!

Sustain Me

"Cast your burdens on the Lord and he will sustain you; he will never let the righteous fall."

Psalm 55:22 

Among other things, sustain means to to keep a person, their mind, spirits, etc., from giving way, as under trial or affliction. God promises to sustain me. He promises to hold me tight and not let me become lost in my afflictions. He promises that I will never fall. I am reminding myself of this, every single minute.

source

The last two weeks have been very hard ones. I haven't been able to do very much at all. I feel like I am spending more and more of my time in bed, with the shades drawn and with little noise because I am so sensitive to the stimulation. I am having a hard time eating and swallowing food and drinks. I am choking on most anything that I try to swallow. And to add insult to injury, my insomnia is raging. And not sleeping makes everything worse. I am only getting a few hours of sleep during the day because for some reason my mind refuses to settle and allow me to have a restful night's sleep.

I am trying hard -very hard- to remain positive. I feel so bad and I am so tired, it is hard to do some days. I know these days will pass but in the meantime, I am trying to get through each hour. I say to myself, just breathe.

My spirit is seems battered right now and tears come so easily. I am very sad.

I am not able to be on the computer very much right now. It is difficult to find the energy and thought to try and post and visit you all. I know it sounds strange to say that being online is an effort but thank you all for being so supportive.

I hope to *see* you all very soon!

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



One of those days.

So, today has been one of those kind of days....

Yeah, I know, it sure isn't pretty!

I have fainted two days in a row (after going weeks and weeks with no fainting!). After I faint, I usually get a pretty tough migraine and today and yesterday was no exception. My nausea has been quite terrible for several weeks now and my Zofran usually takes care of that problem but I seem to be having to take alot more Zofran than I normally do.

I wanted my day to look like this! But I actually had to turn my beautiful Christmas tree lights off because everything seemed to be irritating my body. So, needless to say, a few tears have been shed today.



But, the 22nd of December just seems to be a day that God likes to remind me that there are truly angels among us. Last year, He reminded me in a grand way. And just when I go forgetting the power of prayer and love and friends, I am reminded again in an equally grand way!

A box came today.

You can bet, the rice wrap and heating pad came off to check out this surprise! ha! The box was just from Amazon. There wasn't a return address from someone that I knew. I was a little perplexed. I wasn't expecting anything.

I opened it and here this was.

A beautiful gift from my beautiful friend Yasmin. I was not expecting such a kind and thoughtful gift from such a wonderful friend. This book was on my Amazon wish list! She caught me completely by surprise!!

I love Nancy Guthrie. There is something about the way she writes that I connect with. She uses her own personal struggles and tragedies to remind others of God's presence.

I highly recommend her books.

Thank you so much Yasmin. Your friendship and constant encouragement means more to me than words can ever say. Thank you for being a beacon of God's unfailing love in my life.

Merry Christmas!

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}