Tuesday, November 6, 2012

miracles come in tiny, perfect doses

I take a lot of pills but I am really, really okay with that. For years and years, my family and I have prayed for that one pill. That one, unobtainable, perfect, magic, fix-all pill.  
Yeah, those don't exists. 

But they do make one pill that is pretty dang close to that miracle pill that my family and I have searched for for nearly 15 years. 

Plaquenil.
One pill. Twice a day.
That did it.
I got my life back and what a life it is.





Plaquenil has been around for a very long time; decades. It was first used to treat malaria, then RA and now it is used forLupus. Being diagnosed with Lupus and being treated for it has absolutely changed my life. It is hard to believe that I wasn't diagnosed for so long. I still have Dysautonomia and Chronic Fatigue but they seem to be secondary disorders to the Lupus. Thus, with the Lupus being well controlled, these disorders are controlled as well. 

I just wanted you all to see what my miracle looks like. I'm also reminded everyday, twice day that I wasn't forgotten or forsaken. That is a pretty awesome reminder! 

More to come on my summer! It was busy and long! I have someone very special that I want to introduce to you all!

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Monday, October 29, 2012

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!
 
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Wednesday, April 18, 2012

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!
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Wednesday, April 11, 2012

Austin Was Amazing

I am home from Austin and wanted to share some photos from my VERY FUN trip!! Austin is an amazing place! I want to move there. :) I always thought New Orleans was my favorite place but Austin is now on top of my "Favorite Places" List. We did stop in New Orleans on our way to Texas, though. I forgot how completely insane Bourbon Street gets at night. (Just in case you were wondering!)

We had dinner in New Orleans at Emeril's restaurant. It was so good. Kim and her roommate Jimmy. Jimmy is a traveling genius. I want him to plan all my vacations...he planned us a great trip. Please note this is the only photo of the 3 of us! :( I always had Jimmy take our photos and never got one with him. I am such a nerd!



 My best friend Kim.

Beautiful view of Austin nature. 

Some very yummy food trucks on South Congress Street. We had cupcakes! They were delicious! 

This photo was taken with my iphone so its color is a little off. We were at a restaurant called Shady Grove. I had the most amazing sandwich in the history of the world! It was called the "hippie chick". Grilled veggies and chicken on some very good bread!  

That amazing "hippie chick". Seriously, doesn't that look great?!


Our itinerary for our final day. I rested the first half of the day so I really did start out until number 6! :) But I still count it as a very successful day!




Our last night in the great city of Austin. I was pretty excited about this photo!


Thank you so much to everyone who sent me well wishes for this trip and prayed for me while I was gone. I am so happy I was able to go! I am so very thankful! 

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Monday, March 12, 2012

Because Sometimes Those Silly Cliches Are Really True...even for me!


I hope you are prepared for a WHOLE LOT of HAPPINESS! When is the last time I said that on this blog?! I will admit it has been awhile!

First order of business. School. School is going really, really well. Even though I am still little bummed that I switched my minor to Human Growth & Development that are two really major positive outcomes. The first is that it compliments my Psychology major a lot more that my first minor did and secondly, I can take every single course for my minor online! Hallelujah! I go to campus once a week and observe at an on site daycare for an hour. Some weeks have been difficult but the last couple have been just fine and (drum roll)....I even drove myself the last two times!! Whoo!  I will be signing up for Summer and Fall classes next week. I am taking two online courses this Summer and taking a leap of faith and choosing to take one course on campus for the Fall. I am nervous and very, very excited! 

Secondly, yes I am driving some!!! Seriously, it feels so nice to drive again. I feel like such a carefree teenager when I am able to drive. I even have a "car-tunes" playlist on my iPod just for the special occasions. I only go places close to home. (Like the pharmacy or to get a pedicure.) I am planning to go to the library this week or next. It is about 25 minutes away. I always drive when someone else is at home and has access to a car-just in case I get where I am going and get sick and can't make it back home. Always be prepared.

Okay, this is my biggest and most exciting news!! I am really nervous but so super excited at the same time. I have decided to go with my best friend Kim to Austin, TX, the first week of April. Kim, her roomate and their friend from church will be coming from Maryland during their spring break. They are coming through Alabama and I will ride the rest of the way with them. I am a little nervous because my mind likes to scream at me and remind me of all the horrible things that could go wrong so far from home but then there is another little voice that is like, "Hey, put on your big girl panties! You have been way too sick for way too long to give up an opportunity like this!" Even though the little voice scares me a litttle, I happen to agree with it and I am taking a huge leap of faith and I am going to Austin...like a regular, normal person!! I am so excited!!! 


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Wednesday, February 22, 2012

Sunshine somewhere behind the clouds.


Hello Friends!!
Do you remember me?! How long has it been...
Don't answer that...because it depresses me.

Before I continue, I just want to say that your emails (that I haven't responded to) your beautiful Polyvore sets (that I haven't been able to take in) and your cards and your prayers have really overwhelmed me! You all have been true friends! I drop off the face of the earth -literally- and you all surround me with love and care. I am so thankful for you all!
 

Well, I will try and explain my absence from the internet. My blog, polyvore...the world really. I was completely bed bound the months of November and December. It was a really lonely and very sad time. I became so sick and so weak. It was just really defeating. I am not going to lie. I was so weak and sick that I couldn't even get online. It just wasn't good. I wasn't able to leave home and do our normal family Christmas traditions-which meant my family stayed home with me. My Mom went out of her way to make sure my bedroom was super-duper "Christmasey"! 

 Oh, I also got an iPad! :) Yay! I am hoping the next time I get dressed to go to the doctor, that I will have enough time to do a little video and put on here. 

I am feeling a little better now that I was before the new year. I am taking a new medicine called Plaquenil. It is used to treat RA and Lupus (as well as other things). It has been the first medicine in a long time that has made a slight difference in my symptoms and I am REALLY excited. It helps with my fatigue. (Which is my number 1 symptom). I am now able to move around the house a little bit easier and I don't get as tired when I talk with my family. I can even eat some meals at the table! HUGE! I know that doesn't sound like much but it really is a huge deal.

Also, I am taking my online class at the University! So, so happy about that!! I feel like I am accomplishing something when I am doing school work. I was worried that after nearly 3 years away from school that I would have a hard time getting back in the swing of things but so far it has been good. I have to pace myself because I get really tired after studying but it is so worth it!

I really have a lot that I want to share with you all.

I love you all so much and I really am going to try and update a little more now that I am able! 
And if any of my Polyvore friends are reading this- I CANNOT wait to get back there to you guys! I miss you all so much!!
 
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Tuesday, November 1, 2011

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.



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.

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Tuesday, September 27, 2011

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."


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.

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Thursday, September 8, 2011

Good News

"What is this?", you ask.
Well this would be the 
University of Alabama...where I will be returning in the Spring!! 
Woohoo!!


That is right, friends! I am registering for classes!
I won't be going to campus but I changed my minor and I will be able to take classes for my new minor online. I am really, really excited. This is a HUGE step. Maybe one day soon, I will be able to actually return to campus. 

I had to reapply for admission to the school because I have been out too long. I only have a month to get everything in order because I have to register in October. 
I  am hoping that everything will go quickly and smoothly. I am already a little anxious.

I just wanted to share my good news with everyone! 



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Wednesday, August 24, 2011

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!





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Sunday, August 14, 2011

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.

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.

Monday, August 1, 2011

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-
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Monday, July 25, 2011

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.
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