Evidence of a new day!!

“Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert". 

Isaiah 43:18-19

 I am so blessed that God has given me the ability to embrace each day -each wonderful miraculous day- that I am given to celebrate my health. Through His grace alone, am I able to focus on today and not harbor bitterness about the many, many yesterdays and all the things that I have missed. Instead, I want to show you what all I am doing to catch up and find my way in this new world. 

Evidence #1:

I'm in school! This is old news, I know but the new news is that I am enrolled in TWO classes on campus this fall!! SOOOO Excited!!!

 Evidence #2

I am driving and it never gets old! Never, ever gets old...I'm telling you! I cry a lot while I am driving because I am soooo happy. Driving is AMAZING! Did you know that?!

 (don't worry I was stuck in traffic when I snapped this!)

Evidence #3

I wrap friends' birthday's presents. I don't just stick them in bag. Why? Because I feel sooo good! I feel like getting all my pretty paper goods out and using them! I am little rusty with my handiwork...

Evidence #4

I took a big step (for me) a few weeks ago and I have decided to try and find a new church to attend. I am so overwhelmed by this process. I am terrified of meeting new people and being sick over the last few years has really done a number on my self-esteem.  So, I decided that I had to face my fears head on. I am visiting churches by myself and forcing myself to speak to new people and try to find a new church home. I took this photo after my first Sunday visiting a new church. 

  

Thank you for your conintued prayers, love and support! I am so overwhelmed by your love not only here but on facebook, polyvore and through email! You all love me such much and I am touched everyday!

Long overdue: Surgery Results

The last couple of weeks have been crazy. Seriously. Very crazy. I was in the hospital two weeks ago because I had another one! It was not fun. I forget how absolutely terrible hospitals are. 

And last Monday, I had my laparoscopic surgery. The doctor thinks that he may have found what is wrong.

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When I first saw the pelvic pain specialist that performed my procedure last week, we discussed several possibilities that could be causing my severe pain and those horrible spells that I have. He prepared me for what he expected to find in my abdomen and pelvis during the laproscopic procedure. The doctor believes that I have something called Pelvic Congestion Syndrome. Simply put, Pelvic Congestion is like having varicose veins in your pelvis. Its cause is not known and its treatment is difficult. The doctor marked my abdomen with two big "X's" before surgery, the two points where my pain is the worst during an episode. He said that when he looked in my abdomen, two large, dilated veins connecting to my uterus were directly under the two "X's" he had marked. If those veins weren't directly under those marks, I may not have been as convinced but it was difficult to argue with such a pinpointed find.

I have a DVD and photos from surgery. The photo that he showed me of the dilated veins was amazing. On the left side (where the pain is) the two veins were so large, clearly visible and purple in color versus the right side (where there is no pain), where no veins were visible and all you could see was pink, healthy tissue.

I really didn't want to include a photo because I felt that may be too much information. So, I sort of made a crude example to give you a better idea of what I am talking about.

The good news was that after my previous surgeries from the car accident in 1994, I had very little scar tissue on my left side. My right side was another story. He said that my right side was quite scarred and the right side of my large intestine was covered with scar tissue and slightly connected to my abdominal cavity. He took no action (something we had previously discussed) because he didn't want to cause any problems that I wasn't already having. Which was fine with me. He said that I was at risk for a future bowel obstruction because of the scar tissue and I would have to watch for warning signs but it really isn't something that I have to worry about.

He also found a small amount of endometriosis that he removed. He said that it only takes a teeny tiny amount of endometriosis to cause pain, so hopefully removing it will help. And he also found a small polyp in my uterus that was removed. It may have also contributed to some of my pain. 

So, there were definitely some problems that only surgery could address. I am glad that I was able to have these things looked at and addressed. I was also able to openly and comfortably talk about pain management with my doctor; something that can be very uncomfortable to do. I have found that doctors are not willing to discuss aggressive pain management openly. I understand their caution but sometimes, aggressive treatment is warranted. I appreciated his understanding and willingness to work with me and LISTEN to me. 

I cannot begin to tell you how compassionate this wonderful doctor is.

I have some more things that I want to share about last week and the last few days but I don't want to bore you anymore today! 

Thank you so much for your kindness, love, prayers and support.

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."

 

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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.

Good News & Bad News...

I am using the words of my doctor.

Okay, I had my *lovely* (please not sarcasm!) colonoscopy last Wednesday. The prep on Tuesday was not nearly as terrible as I had feared; thank goodness! I had imagined that it was going to be awful! I was feeling a little weak as the day went on because I couldn't maintain my fluid balance and my blood pressure dropped a little bit but I didn't have a spell. 

My appointment was at 6am on Wednesday. I will schedule all my future tests that early if I can. It was so nice because I was the first patient-so I was in and out; there wasn't much waiting. So nice.

My colonoscopy was great. No abnormalities whatsoever. Which is great for the obvious reason, no one wants something wrong but bad because we still don't know what is making me have those horrible spells!  

Obvious things are all coming back as normal. As crazy as this sounds I just want them to come in the room as say, "We have smoking gun!" And show me abnormal blood tests or point to a scan and say, "Ah, here it is!"

I have faith that God heard our prayer that first appointment with the GI doctor and He will eventually lead me through this valley. But my goodness, I am not patient!

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.

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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.

no place like home

There is no place like home. Truly.
I am so happy to be back home and take a nice long, hot shower and sleep in my own bed...and see my sweet Holly!

Thank you so much for your prayers and for reaching out to me over the last few days. I cannot even begin to tell you how uplifted I felt knowing I had dear people praying for me.

I don't have much new from the doctor. They did a lot of tests and were able to rule out some things.
I am still waiting on some lab work to come back...so we will see...

I promise to give a better update in the next couple of days. I just wanted to thank you all for your prayers and love.

A little thank you and an update

Dear Friends

Thank you all so much. I was so overwhelmed by each and every comment, email and message that I have received for you all this week. Thank you. Thank you.

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Thank you for the bottom of my heart. You all remind me constantly that I have so many people who care about me and love me. It is so amazing to know that I have so many prayers being said on my behalf. 
Thank you so, so much.
That just doesn't seem to be enough...but thank you.


I had an appointment this past Wednesday with a Rheumatologist. I don't know how it happened but I have had TWO AMAZING doctors' visits in a row! Seriously, that is a record that has not been set in my 13 years of being a professional patient. :) He was very kind and thorough. He talked from the moment he opened the door. He was a walking encyclopedia. He knew a lot of information. He was especially kind and I found him very attentive. He is trying me on two new medicines that may help with my fatigue! I am excited. Cautiously so, but excited nevertheless. 

My Mom and I thanked him before we left for being so kind and for believing me. And this was my favorite part...he looked up and said, 

"Doctors are crazy. You aren't. Your were obviously a lively young lady-cheering, school friends-you had a life. Why would you give that up for this? I believe you. And you believe in yourself because we are going to try and make you feel better."

I really don't think I can add anymore to that. So, I will let the doctor's beautiful words linger on your mind. They make me happy.

I do go tomorrow and Wednesday for GI tests. Nothing too involved...just some CT scans and blood work. Please be in prayer that something will show up and the GI doctor can begin to treat these spells.

Thank you friends. I love you all more than you know.

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.

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!

to tell my story.

I spent a wonderful Thursday evening with one of my dear friends, Becca. We don't get to see one another as often as we would like and we always enjoy our time together. Before we said our goodbyes we were talking and she asked me about my blog. Then she asked me why I had decided to start blogging.

I don't know. I really had never thought about what my reasons were.

So, it got me thinking. 

Why did I start blogging?

I think that I started blogging because I wanted to tell my story. The healing that comes when someone hears your story and validates your feelings is really powerful. I know that all too well. The cathartic healing that comes from this blog is surprising to me. I didn't know who would see this blog - if anyone -but I wanted my words to be seen. 
I wanted to tell my story.
I wanted to tell the good and the bad. The ugly and the beautiful.

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I also wanted to begin my blog because my world has gotten smaller over the years. One by one people have left and I have watched has one opportunity after another has slipped away and I saw this blog as a way that I could reach out. I have always believed that if my suffering could help one other person feel less alone then my suffering would not be in vein.

Beginning this blog was my way of saying, I am here. I understand. I will listen.

My story is not remarkable. It is truly ordinary. Perhaps my circumstance may be a little different but my pain, my hurt, my suffering, my love, my joy, my hope and my faith-those are shared by everyone in all walks of life all across the world and they have their stories too. The common thread are those emotions that weave in and out of different stories.

"The best things of life come out of wounding. Wheat is crushed before it becomes bread. Incense must be cast upon the fire before its odors are set free. The ground must be broken with the sharp plow before it is ready to receive the seed. It is the broken heart that pleases God. The sweetest joys in life are the fruits of sorrow. Human nature seems to need suffering to fit it for being a blessing to the world" 

Francis Cowman, Streams in the Desert

just wanted the world to know...

I have had a couple of better days and I have enjoyed them so much! I haven't done anything major but I have just been more comfortable. (I even did a couple of loads of laundry and that made my Mom happy!)

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Tonight, I am having dinner with my best friend Becca. I am so excited. 

I feel it is important to share when I am having a better day (or two!) because you all share in the down times and it is important to celebrate the up times together too!

 

It is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is Well With My Soul

 Horatio Spafford 

I love this song. It is my song. It is my song in the sense that it speaks the words that my heart feels. Even on the really, really bad days. This whole thing -this gut-wrenching, devastating, suffocating thing- is okay. 

My heart is at peace with God's work even when my head is saying otherwise.

Christ regarded my helpless state. 
That one line in this wonderful song had escaped me until this weekend. 
Among other things, regard means:

1). to have respect or concern for 2). to think highly of 3). to take into account; consider

 

He planned ahead. He planned for this unthinkable situation that I didn't plan for. He has continued to bring people into my life to help me through each day. The last ten years are full of God's loving plan. It has been full of loving souls that have been sent to help me find my way.

 

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When I am down and confused and feeling alone, I remember each precious soul that has been placed in my life. I think about what they look like, what they sound like and I remember what their role has been during this difficult time. 

It is pretty overwhelming. It is such a beautiful reminder that long ago before I was ever created..

Christ regarded my helpless state and he chose to send me miraculous lifelines that catch me just when I feel my feet slipping from under me.

 

It is a beautiful thing. 

hello

My sleep pattern is still off which means I am a little "off" too! 

(Ask my family and they would say that I am a little "off" whether I sleep or not.)

Yesterday, I just started crying and it felt really nice. That may sound strange but I am a very emotional kind of person and I cry a lot. Always have. And sometimes, when I go to long without a good cry it catches up with me. 

When I haven't had a good cry in awhile, the tears are usually triggered by the tiniest little thing -as was the case yesterday- and then a tidal wave comes. I felt better after it was over so that was a good.

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All the dots on my iPod calender are making me look like I am cool, again! Except this month's dots are not for television shows but lots of doctor's appointments and birthdays.
It is a busy month. (According to my iPod.)

I do have an important appointment on Tuesday. I go every 4 to 5 months and I have an occipital nerve block done to help my migraines. It sounds much more intrusive than it really is. Basically, the doctor injects a mixture of steroids and lidocaine into each side of the base of my head. It literally takes 60 seconds.
I have a terrible time recovering from these blocks but they are worth it in the end because they help my migraine pain so very much! I am not sure what really happens but my Dysautonomia just doesn't like the blocks. I don't mind having a few tough days for fewer migraines. I consider it a fair trade.

Anyway, I probably won't be blogging this week but I plan on being back and in full force next week for sure.

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

a special grace

It takes a special grace to be the sibling of a person with a chronic illness.

It takes great selflessness and a giving heart. 

I can't imagine how difficult it must be to carry the extra load that these special siblings carry when they live day in and day out with another person's illness.

These precious siblings are the unsung heroes of the story of  those who suffer in any way.

I realize that I am very blessed to have such a supportive sister. It breaks my heart to know that she doesn't know me any other way than "sick". I was in the car accident when Haley was 7 and since that time our family has dealt with my health in one way or another much of the time.

There have been times when she has rushed home from time with friends to take care of me. Haley always invites me to spend time with her friends when she goes out and she drives  me to see my friends and waits somewhat patiently for me in the car until I am ready to come home.

I have not always treated Haley like I should. I put way too much pressure on her. I expected her to not only be my sister but I demanded her to be my best friend, my entertainer and my care giver. I think part of me felt like she was healthy and she owed  me that much of herself.

I was wrong to do that. For a time, those demands strained our relationship. 

Fortunately, with help, I saw that I was demanding things of Haley that were not fair. She was already giving more to me than she should have ever have to and she gave of herself willing.
Haley has showed me love in such a way that I cannot put into words. She has showed me how to give and how to love unconditionally.

]My sister is a nurse. I have no doubts in her ability. Her professors always gave her high marks for her treatment of her patients. She is an amazing person. I know that one day very soon she is going to touch so many lives by working as a pediatric nurse. Her kindness and gentleness is going to be a rock for families and their babies on days that they would like to forget.
I know she will do that for them because she is my rock everyday.


This amazing person is who God gave me as a sister and I am so blessed.

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.  

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!