State of the Body Address

When I go on hiatuses in my blog, its typically because of my health.  This time is no different.  I have copied this from my family blog.  It's the details that everyone asks about, it's where my head is and its a lot of my heart.  I am so grateful for every person in my life that has ever said a word to me...a word of encouragement, an "I'm praying for you", given me a hug.  I am so blessed by so many people who play a part in my life.  Alone is not an option for me.  I have lots of "Together's" and I am so grateful to have so many people to be "together" with.

The Facts

Around the beginning of September I played a pretty tough tennis match with my sweet friend, Christy.  It was tough for me because it was hot, hot, hot and I was getting weaker by the game.  I looked at her and wondered why I was tanking so!  As it turns out, I never recovered from that match and within the next week found myself in the hospital with pneumonia.  No wonder I couldn't breathe on the court!  After lots of tests and even some guesswork, it was determined that I had pneumonia simply because I was on Humira (bc it suppressed my immune system).  After I left the hospital, I still didn't have answers or even a plan and met with many -ologists.  I went to an ENT to determine if I had sinus issues and apparently that was it, unbeknownst to me.  What I loved most about my ENT was that she was the only doctor who didn't just blame everything on my Crohn's or the Humira, as every doctor to that point had done.  She ultimately discovered I had a major sinus infection that would continue causing pneumonia if I didn't nip it.  I was so grateful, as she was the first doctor to keep pressing for a cause.  Unfortunately, her solution was to give me an antibiotic called Clendamycin.  Take note...never EVER take this drug.  I was warned it would be hard on my tummy and within a few days was vomiting profusely due to the antibiotics.  However,  I didn't want to go back in the hospital to get an IV, so I forged ahead.  It was brutal.  Within a week after finally completing the antibiotic I got CDiff.  I was aware it was a risk and I knew the exact moment my body changed.  I called my GI and told him to test me and sure enough.  I was positive.  He gave me a script for ANOTHER antibiotic (4th at this point)  to get rid of the CDiff.  At that point, my body was so weak.  I refused to take another antibiotic until I was about 5 days into CDiff (on a Saturday no less) and was grateful for that "just in case" script.  My GI referred me to an Infectious Disease doctor who actually extended the length of the antibiotic by 4 days.  I never made it that long.  I could not take the nausea anymore.  My last pill was the week of Thanksgiving, so I had been nauseated and sick all of September, October and for 3 weeks in November.  I was done.

My Truth

Since the day I went to the hospital in September for pneumonia, we have been loved and supported and prayed for by an amazing amount of people.  Not only those who are family or known us for years, but this wonderful family of friends we have here in The Woodlands.  Our friends immediately jumped into action to help Babe at home with the kids and feed them in my absence.  They came to me at the hospital.  These are all things I would do in a heartbeat, but to be on the receiving end of such love and compassion is a lot to take...especially when it seems like we have needed it for an extended period of time.  When you are used to taking care of everyone else, it is extremely humbling to be taken care of yourself.

The difficult part was that since I took that Clendamycin, my stomach was destroyed.  I was/am in chronic pain and vomit on a regular basis. I live in a world of nausea even off the medication.  It has been a very difficult time for me enduring it and my family worrying about me.  Thru it all I have been balancing my business and my family and not doing a very good job of either.  Every time I get sick, I feel like it couldn't get worse.  And every time it does.  The pain in the last few months has been unbearable with the nausea mixed in.  I carry a barf bag with me every where I go.  It's really classy :) Whatever I have, be it Crohns Disease, Candida issues, or CDiff, it is a very painful and brutal disease.  There are no words to explain it so that those who don't have it can understand it.

Babe has been my saving grace.  With every ounce of my being, I do not know how I would have survived this struggle in my life without him.  Each time I turn around, he has not only made me the proper food to eat to keep me healthy, but he has made delicious food to keep me healthy.  I have told him many times that there is no way he can "go" before me.  He has pulled me out of pits day after day...pits that I didn't have the energy to climb out of myself.  We have prayed our hearts out over me which is hard for me.  I don't know how to pray for myself.  When I am in so much pain, I just cry, "Jesus!"  I love that song that says, "When you don't know what to say, just say 'Jesus.'"  I say, "Jesus" a lot!  We finally reached the point where we admitted that we needed help.  It was time.

I called my church and made an appointment with our pastor to pray with us and for us last week.  I had no idea what to expect, but I knew we needed some super powers involved.  Our meeting was so much more than I thought it would be.  Babe was home with me that day, so we both got to go.  Our pastor asked a lot of good questions about Babe and his role and my illness and how it affects us and our family.  To say there were tears shed is an understatement.  Babe and I are solid and united and ultimately so much closer for the trenches we have been thru, but that meeting was so purifying for each of us to cry out to someone else for help.  He prayed over us, anointed us both with oils and we are set to meet with him weekly.  I have high hopes for those meetings.

Thru all of this and the testing of my faith, I go back to Job...a lot.  I have never been angry with God, as our pastor inquired.  I just want to be sure that thru this awful time that the Glory be given to the Lord.  I know that I am sustained daily from His strength alone. We both know that God is working thru us and there is nothing more emotional to me than to know that God is using ME to do something for His kingdom.  I still beg for healing, don't get me wrong.  I often cry out asking, "WHEN IS THS OVER?"  But ultimately, God is in control.  I dream of a Heavenly body...with no pain and no suffering.  We have outwardly discussed the "what ifs" which are hard.  Babe fears losing me and I fear my children growing up with a sick mom or without a mom at all.  But all these fears are not ours to bear.  When I start to worry, my stomach hurts more and it is ultimately a downward spiral for me.  I can't go there.  I don't mind giving those fears up to the Lord.

What I do know is how my disease has changed my life.  My perspective is one of necessity.
1-Good health...every day is a blessing to be without pain.  There are some days that I count hours as blessings without pain.
2-Food...Babe is all I have to say.  He is the best cook and my daily supporter thru cooking whats best for me, doing, praying, loving.
3-Family...every moment that I am down is time away from my boys and I often feel a LOT of guilt and anxiety over what my children are missing because of me.  That part is tough.  But what I have seen a glimpse of is their appreciation for a healthy mom when I am healthy and their compassion for me when I am ill.  I get head rubs, foot rubs, plates of mini wheats and half eaten pretzels. :)  All things I can't eat, but certainly make me feel better for the TLC.
4-Friends...there is no way we could have survived to this point without our friends.  No way.

After those 4 things...nothing else matters.  It really simplifies life when you are just clinging TO life.

This morning I woke up sick.  I was miserable and strangely enough, I rejoice when I can throw up to get some of the pain to go away....I threw up.  It is Sunday and Babe had to work, so I used every bit of energy I had to get the boys and I to church.  I wanted so desperately to be at church worshipping in the sanctuary.  I walked into that sanctuary nauseous, unsure if I would have to run to the restroom.  I prepared JBS to watch the other two if I did.  As we stood for our first song, I started to cry and then sob.  My kids were staring at me not knowing what to do.  Sweet JBS said, "Does it hurt that bad Mommy?"  Which, of course...made me cry more.  There was nothing like that time this morning, though.   For one, the sermon was about how we fail to call on God to take over when we need it.  Trust me, Lord, I am calling your name!  And when we left, I called Babe to say that the entire time I was in that sanctuary I was without pain.  I had a spiritual experience that I am not sure I have had before, but in that sanctuary, I felt like I was standing in the presence of God.  The Holy Spirit was there.  I was so emotional and so relieved at the same time.  As we walked out and got in the car, my pain returned.  I wanted to stay there all day.

My Hope

Two years ago, one of my dearest friends from college introduced me to a Fecal Transplant (FMT) and I have been asking for and studying this procedure since then.  As the time has passed, my doctors have become more open to this procedure for me.  It is ultimately placing the healthy bacteria of one person into the colon of an unhealthy person (me).

This procedure is only approved in the US for someone with CDiff.  Before I had the CDiff diagnosis, I discovered that it was only approved in the US for CDiff, but I could fly to Australia where there was a pioneer doctor using it to treat Crohns Disease!  I emailed them only to discover, that venture would be nothing short of a $50,000 and 8 weeks away from my family.  It was so discouraging to know there was something out there than could help me and to be so desperate and not be able to get it.

In my years of researching, I discovered another doctor in Oklahoma, of all places that is a leading researcher in the procedure.  I was also in touch with my GI at Mayo Clinic in Rochester, as well.  Each of them said it was not indicated for Crohn's yet and they couldn't help me.  Huge disappointment.

SO, if you can image my  joy when I received a CDIFF diagnosis!  Most people would cringe, but I had the paper in my hand to say I could get the procedure!  I called John and my parents with tears of joy..."I HAVE CDIFF!!!"  It's a terrible issue to have, but truthfully, it doesn't come close to the other issues I deal with.  I am not kidding when I say that I think that CDiff was my answer to prayer.  I had desperately prayed for a way to get that procedure and if getting CDiff is how God is helping me get it, so be it!

It took some time for me to heal to get researching to find out where I could go....for real.  I first contacted the doctor in Houston and exchanged a few emails with him while I was waiting to hear from the doctor in Oklahoma.  The doctor in Houston responded with "How many times have you had CDiff?"  {isn't once enough???}  Then, I discovered the doctor in Oklahoma was no longer in practice and am guessing he retired.  Ultimately, I received an email from Houston saying, "Give your meds a chance to heal you.  75% of patients with Cdiff are cured with their first round."  I was heartbroken.  I read that email every night and finally typed out a last ditch effort email.  I gave him my history of Crohn's and Candida struggles, tugging at heartstrings and anything else I could muster and pushed SEND.

The very next day, I received an email from the doctor's assistant with attachments of all the papers for the procedure!  Holy Hannah!  I just completed those papers and will send them off today.  There was a section that said that they are not approved yet to treat Crohns, but are taking applications for when they are.  I have no idea if he sees me as a Crohns patient or a CDiff patient, but I have never been this close before.  And even more so...not traveling across the world, but right here in my own town.

Final Thoughts

It occurred to me as I wrote that email that I am now 40 and my struggles began in college when I was 20.  I have been fighting this battle for half my life.  There are lots of things I hate about it.  I hate that people worry about me. I hate that people feel the need to ask me how my health is all the time.  I hate the pain it causes me and my family.  I hate not being able to eat at social functions...or at all.  I hate missing out on days at a time when I can't function.  I hate it.  Illness is from the devil and its his way of trying to take me down.  I am stubborn and I refuse to be taken down!  I fight for my kids and I fight for my family.  I fight because I know that God has bigger plans thru my disease.  I don't know what they are.  I don't know when or how this story ends, but I know that somehow God is working His purposes thru me and Babe and how we grow thru this together.

I am so grateful for ALL the "togethers" I have in my life.  God is so good.

I have never been weaker, but know I have never been stronger.

Blessings

I have had this song on my iPod for a year and I play it over and over.  Every time I play it, I cry, rather sob.  Laura Story is the artist and she wrote it while her husband was undergoing treatment for a brain tumor. I was so proud of her when she won a Grammy for Blessings.  I know it touched my life and I am sure MANY others.   Listen to the song HERE and click Track 5. Here are the lyrics to follow along:

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise


So many of the lyrics hit my heart starting with "Blessings thru Raindrops," which is why I even started My Intestimony.  I know that God will turn my illness into a blessing, be it for me, or for someone else.  The "Thousand sleepless nights are what it takes to know you're near" and "the trials of this life are your mercies in disguise."  How many times can we all admit that Garth Brooks "Unanswered Prayers" has applied to our lives?  It's the same thing to know that ANY trial of our life is going to produce real fruit if we just hang on for the blessing to come.  God is FOR us, He loves us and He will not harm us.


I start to cry by the second verse:
We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe


I know how many times I have prayed for healing and also the tears of frustration and pain that follow.  I am ashamed when I am angry or when I don't feel that God is near...I know the Lord has bigger plans and He is just saying, "Penny!  Please trust me.  My plan is so much bigger than you!"  (See...I am crying now!)  I often think about my pain and think about how many OTHER people have had greater pain and how Jesus suffered to his DEATH on the cross..for me!  How can I complain about pain?


I know with confidence that I am learning about trials period.  I have had a great life with no big waves to speak of.  I had faith in my heart and in my mind, but now I am really learning to put it to the test.  And, I am being tested for sure.  Even more difficult for me than the pain, is the fact that it affects my family...and my kids!  I cry every time I think of missing something of theirs because of my health.  However, there are days like today where I just can't pretend I don't feel good.


And this part really gets me:
We know that pain reminds this heart
That this is not, this is not our home
It's not our home


SO TRUE!  If anyone would have ever asked me what my greatest fear was 10 years ago, I would have said without missing a beat "Eternity."  I know I am going to Heaven, I know thats where I want to be, and I know its GLORIOUS!  But I CANNOT comprehend eternity...forever and ever and ever and I drown in those thoughts and actually start to have a panic attack.  What is eternity?  My feelings have certainly done a 180 since then.  While I still don't comprehend eternity and am thrilled beyond words to be assured I am spending eternity in Heaven and not in Hell, I actually dream about being in Heaven.  To be without pain and to be able to be "normal" in how I eat (Do we even eat in Heaven?)  Just the thought of being renewed and my body will be whole again....(tears again!)  


Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy


Earth is NOT our home.  This is NOT our home and we should not get too comfortable here...because something beyond words is waiting for us! WHY in the world would we choose EARTHLY treasures for this short time when we will be in HEAVEN FOREVER?  (slight anxiety!)  If you have never thought about it that way...it's probably time you did. ;)

And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Parasite Cleanse

Since this little blog is a testimony to my journey through a major health crisis, I am learning to be more truthful with myself and those around me with how I really feel.  It is actually helping me to admit it more when I have a bad day...or week.  I never want to be a complainer and I always fear that people will think I am complaining if I voice my pain too much.  I still think it's a fine line.  But having this place to journal my feelings helps!  With that said, I have learned that I am more honest about my pain if I write while I am in it...as opposed to after I have recovered.

So, guess what?  The last 24 hours have been brutal.  I have been doing SO well.  My diet launched me to a new level, I had energy, I was starting to think about exercising again, I felt good for the first time in a long time.  I was able to "cheat" a little on the weekends, but always landed back on my diet for the week.  I also started acupuncture.  It has been a new experience for me and I am still watching for big results.  I am dreaming for the first time in years!  I really haven't dreamed since I had kids.  Since acupuncture, I have dreams every night.  I guess thats good?  When I told my acupuncturist about my entire health history, she asked if I had ever done a parasite cleanse.  Of course, I hadn't, but it sounded interesting since I did acquire Giardia the first week we moved to Houston.  She suggested I try it and I was willing.  I had just started recovering from the big detox and even Babe suggested I wait a bit to start something new.  "Let's just enjoy your good health right now, " he said.  I totally agreed.

So, I geared up and started the Parasite Cleanse last week.  It is very safe and easy and the more I read, I was thinking I should do this every once in awhile!  Without grossing everyone out, we do have parasites that we aren't aware of...from undercooked meat, from daycare centers, and more.  It is a simple regime with 6 pre-packaged pills in the morning and 6 pre-packaged pills in the evening for 10 days.  After the first two to three days, I started to get a skip in my step. Could this have been my problem all along? I was feeling great! However, yesterday was Day 6.  I started to get some pain in my stomach. I thought I just needed to eat, but it continued to get worse.  So great that I couldn't sleep.  UGH!  No more sleepless nights!  I thought I was over that!  By about 3am I started to get worried and got online to research the cleanse with greater detail.  Bingo!  The way the cleanse works is by taking natural herbs that create an acidic environment in the gut that parasites cannot live in.  Sounds fine to most people...but not to a girl with a massive bleeding ulcer in repair. My pain is a relapse in my ulcer.  After all the hard work, all the strict eating, I am so discouraged thinking I am back where I started from?

I am hoping and praying that I can get through this on my own.  I popped a Prevacid in the night and while I had moved back to one dose a day, I am stepping it back up to two.  Dear Lord, PLEASE don't let me get to the point of another blood transfusion.  I am hoping the increased dose of Prevacid will kick in and help me re-heal in the next few days.

I do know that I am on the mend.  While I have made HUGE strides forward, I know there will certainly be small steps backwards.  I just have to remind myself to focus on the prize.  I so often think of the verse from Psalm 34:8.  "Taste and see that the Lord is good.  How blessed is the man who finds refuge in Him."  I have tasted the feeling of good health over the last few weeks and it is SO good.  I can get there again!

Lonely Place

I have followed the Candida Diet before, so I am fortunate enough to know what to expect. The first time I did it, we lovingly, or not-so-lovingly, refer to it as my exorcism.  By simply  removing difficult to digest foods and only eating lean veggies and protein, my body revolted.  I was nauseous, every pain I ever had in my body multiplied by 10, I vomitted for days, I was weak...it was brutal to say the least.  I didn't expect all of that, but thankfully, I had a nutritionist coaching me every minute of the day.  She told me "that's normal" and "this is what will happen next" and she prayed for me.  I think she really started praying when she discovered that, as she said, I was the worst case she had ever seen.  At that point, I was doing it on my own, through this nutritionist simply because I was referred to her by a friend.  I wasn't completely in the know, but I did know that no one else was able to help me up to that point.

This time around, I have found myself in a very lonely place.  That nutritionist is gone and I am following the diet on my own (and with my sweet husband, too!)  I should say "We" are alone because Babe is very much involved in helping me get well.  When I am dragging, he is picking me up.  When you do this diet, it is also considered a detox, or cleanse.  All the bad stuff is getting out and you don't want to take meds or painkillers or anything that will get back in your system and cause more problems.  So when I say I was in pain, I was in pain.  For my pain, my doctors have given me many refills of Vicadin to get through a day.  All that pain magnifies when you are nauseated, vomitting, and tired.  My stomach bloated and burned like none other.  All the symptoms of illness in your body get worse as they heal which, for me, meant torment.  I couldn't sleep through the pain, I couldn't get comfortable and no one could help me.

Babe was so upset one night because he wanted to take me to the ER.  I WANTED painkillers, too!  But we knew that the doctors would only admit me for tests, tell me my stomach was completely inflamed and occluded and do more tests and more meds and the cycle would continue.  The cycle I have been in for 20 years.

It was at that moment that I tearfully told Babe that we were alone.  It was us and God and no one else.  No one else could come close to understanding WHY I was putting myself through this diet and why I was putting up with excruciating pain.  The first time around, I had blind faith in my nutritionist who told me what to expect.  This time I KNEW what was on the other side.  I knew that I would have days of total hell (to be exact), but I knew that it would be worth it in the end.

Our society puts a whole lot of faith in doctors.  I have great relationships with all my doctors...yes, I have many :)  There comes a point, though, that you have to think about what is good for you and your health and your family.  There is still SO MUCH we don't know about our bodies and drugs and diseases.  We can't expect our doctors to know absolutely everything.  When you get to a place like I am, where the people whom I have trusted to keep me alive through surgeries and painful days cannot help me anymore, it becomes frightening. Very frightening.

And thus, the Lord has me where he wants me and that is on my knees, begging for his mercies and for His healing over my body.  AND, sharing my story with you.

I can do ALL things through Christ who strengthens me.  Philippians 4:13

Thankful for My Blessings

Lately, Babe and I have been particularly aware of the blessings in our life.  We always are, but I think when health or finances or anything BIG threatens a pretty normal life, as humans, we all begin to pay attention when things are going well.  We know first hand that those things can be stripped away over-night.  I have become SO grateful for simply a day without pain.  Imagine that! Be grateful if you are not in pain today! Today, I was at Wal-Mart and saw a middle-aged man in a wheelchair and thought how lucky I was to be walking.  I watched the news story about the young girl who walked into a plane prop and I am so grateful to have my arm and sight from both eyes.  Despite all the pain, I still have something that someone else might desperately want:  a family, children, a house, a car, food, two legs, two eyes, I might even say good health.  After all, my heart and lungs work, I appear to have a normal and active life to those who don't know me.  I have so much to be thankful for.  If you are reading this, then so do you!  Be thankful!

With that said, I really want this blog to be real and not sugar-coated.  I am good at making people think I am OK...really good, as I have been doing it for 20 years.  I don't like people fretting over or worrying about me.  I am strong, but I also try to be stronger than I am.  And, I am learning from many of my dear friends to let them help me.  To let people know when I hurt, to let friends take my children for a few hours, to let people help.  Hardest for me is letting my husband know I am in pain.  It's so very hard to accept that I need help, but I am learning.  Funny, because a friend asked me just yesterday if she could make us dinner.  So sweet, indeed, but can you imagine her trying to figure out what to cook for a family that isn't eating sugar, bread, flour, caffeine, fruit, pasta...?

I just think today is a day to be thankful.  I am SO grateful that I woke up this morning and it is noon and I have not had pain today. I started out well yesterday, but ended poorly.  TODAY is going to end well.  

I AM going to beat this thing.  I AM going to have my body back and I AM thankful that I have an option to do so without putting my body at risk for other illnesses.  I am so thankful for the knowledge I have gained in the past few years and for the people God has certainly placed in my life to teach me how to eat in order to heal my body. 

AMEN! :) 

Making Progress!

So, today is  Day 9 of my Candida Diet Take Two.  Really, I have done it a couple times in between the first BIG time, but this is my second BIG time.  I HAVE to do this.

Today is my anniversary!  Nine years of putting up with my hubs :)  And nine years of him putting up with me.  I met him two months after my second major abdominal surgery.  He had no idea what he was getting with me.  At that point I was 8 weeks out of surgery, feeling good and definitely had cabin-fever!  He never knew me sick...until May of 2007.  Weird things started happening to my body when we found out we were moving.  I fully see that it was the stress that caused it, but since May of 2007, I have been through the ringer. My pain has been so incredible at times that I can appreciate how fantastic it will feel to die and enter the gates of Heaven where I will be healthy again...and forever!  It is a scary feeling to hurt so much that you want to die.  I can say I have been there.  That is the WHY for this diet.  If for nothing else, my boys need me...all four of them!  And that is a GREAT feeling to be needed so much you want to live!

Each morning I wake up and feel just a little bit better.  I get REALLY hungry REALLY fast.  It makes sense when I am eating the most perfectly digestible food.  It doesn't hang around in my stomach for very long.  (Here's to praying that the inflammation in my stomach that was PHYSICALLY keeping my food from emptying is well on its way to healing, as well.)  When I say I get hungry it is painfully hungry.  I have to have food ready at all times to prevent me from cheating.  I get nauseous and many of my pains in my stomach start to return.  As soon as I eat something, I perk up again.  My favorites perks are scrambled eggs and my protein shakes.  Man, they work fast.  I also keep raw almonds with me when I leave the house. There is nothing worse than being with 3 kids away from home and all of a sudden, I start winding down.  It's like my battery dies.  I cannot function.  That is why I have to have some food with me at all times.

 I don't think I have mentioned my protein shakes before.  Here's the deal.  I love Maximized Living's products because nothing has sugar in it. They are made with Stevia.  Music to my ears.  All the ingredients are made from grass-fed animals with no hormones and antibiotics used.  This is IMPORTANT!  Even in protein powder.  I have both the chocolate and vanilla flavors and I mix it with some ice and almond milk in my Magic Bullet and Voila!  A quick pick-me-up. And they really do taste good.  If you follow the Advanced Plan from the Maximized Living book, you are even allowed to throw some berries in your shake.  NO other fruits.  But berries are allowed.

Needless, to say, Babe and I won't be going out for a fabulous meal and drinks.  We can't even go for coffee.  We might just go somewhere and sit :)  If you have 3 children, boys at that, you might understand that just sitting actually sounds dreamy!

Diet Status

As posted in my family blog on January 6, 2012:


So...I am back on my strictest of strict diets...the Candida Diet.  While I had HUGE improvements after I was on it last time, after two years, I have inched back into the problem zone by being lax in my eating.  With all the ulcer and bleeding issues, I knew it was time to start healing again.  I also knew last time I did this diet that I wasn't rid of the yeast.  I still had some symptoms, although MANY symptoms disappeared. 

I started January 3rd with ease.  The 4th, I was moving slow and fatigued.  Yesterday was getting yucky...I was really tired and starting to get nauseous.  By last night my stomach was bloated and in a great deal of pain.  Sleep was scarce.  I hated for it to happen, but once again, Babe had to miss work because by this morning I was not functioning.  The nausea was horrific, the pain and bloating was awful and there was no way I could take care of the kids, a potty-training kid at that.  Until about 4pm I slept and puked (sorry!).  But that, again, was the yeast revolting and needing to be fed.  It's crazy!  All I have eaten is lean protein and veggies and I am nauseous and vomitting.  So, I know something good is happening.  Since 4pm I have actually been able to hold a conversation and sit up in bed.  I am really hoping that I am over the hump.  Please, Lord!

Blah

So many people ask about my diet because they have seen my changes and have heard my story.  In the next days, I hope to post a lot of resources here so you, too, can heal your body.  Regardless of if you have Crohn's Disease or a Yeast Overgrowth, this is a HEALING diet.  This is how our bodies should eat and you would be amazed at how good you feel when you treat your body right.

I am in Day 3 of my Live-it and I feel like poop.  That is to be expected for the first 4-5 days of detoxing.  The first time I did this, I vomitted for 4 days straight.  I firmly believe I have two issues going on, both of which I can control with diet.  I feel that the Candida Overgrowth is what is controlling my life and making me so miserable.  My symptoms only intensify after eating sugar (which feeds the yeast).  I have yeast infection symptoms, which is not related to Crohn's Disease and that alone makes me believe the Candida still isn't under total control.  That is why I am doing this Live-it for a long time.  If I can get the Candida under control, I fully believe that my quality of life will dramatically improve.

If you have never done a diet like this there are two reasons for the pukey 4-7 days.  First, if you have yeast, your body is literally revolting, as my  nutritionist told me.  She said that the yeast needs to be fed to live  (thus why sugar cravings are a symptom).  Yeast only gets fed by sugar and when you eliminate sugar from your diet, the yeast starves and revolts.  That is the TOTAL purpose of this diet...to starve every last yeast cell I have.  Starve it, kill it and stomp on it for all the agony it has caused! :)  The other reason for feeling bad is that by eating all natural/God-made food, my body doesn't have to digest all the hard to digest fats and sugars that it really wasn't built to digest.  By freeing those little ATP energy cells up from tough digestion, they can now steer themselves to places in my body that need healing.  The body is an amazing thing and it prioritizes its energy use to be so efficient.  Food is necessary to sustain ourselves.  But when it doesn't have to work so hard in the digestion department, it can go more readily to healing our bodies.  When you are in a healing phase, you sleep.  Just like being sick.  And what needs healing gets worse before it gets better.  It sort of reaffirms the healing process to us to know it is working.  Right now, my stomach is killing me.  I am bloated and in measurable pain and really slow-moving.  However, the pain is worth it when I know that in just a few days I will be feeling like a million bucks.  It is so important to treat our bodies like temples...what we see and ingest to our brains on TV, what we ingest in our mouths, how we treat our bodies with exercise...

⁹ Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; I Corinthians 6:19


The first time I ate this way, I did the Candida Yeast Diet.  There are many versions online and I am going to post on my opinions about each of them and give you my strict diet very soon.  Ultimately, the diet I am on is a Yeast-like diet, as there is no sugar consumption at all.  No breads, no sugars, no pasta, no rice...and nothing that turns to sugar readily.  No potatoes, carrots, juices, fruits.  I can't have caffeine, alcohol, vinegar.  It seems so daunting at first, but once you find good recipes (which I hope to help you on that) it's really not so bad.


The diet I am on is from the Maximized Living Book, Maximized Living Nutrition Plan.  In this book (pictured above) are two plans.  An Advanced Plan and a Core Plan.  If your body is currently in disease state it is important to start with the Advanced Plan.  It just allows extra healing by really simplifying your food intake.  My doctor told me to do it for 30 days minimum.  I am hoping to stay on the Advanced Plan for much longer.  Once you are out of disease state and just wanting to maintain a healthy lifestyle, the Core Plan is your place to be.  This book is an excellent resource for how to eat well and gives good explanation as to why we should eat what and why we should avoid other things.

Remember When...

I feel like I need to blog a little to myself today.  So, I have something to look back on when I get overly confident in my eating again.  Yesterday, I started eating pure again...only God-made foods and NO SUGAR, whatsoever.  However, without even thinking, I ate a cheese and cracker that my youngest son handed me.  I didn't even realize it until my hubs asked what I was doing.  So, I nose-dived after that.  And...I paid the price.

I was sick all night.  Not because of a cheese and cracker, but because I could feel myself getting worse already.  I can feel that my food isn't going through my stomach and I knew I would get to this point, especially after being lax on my eating at Christmas.  This morning, I woke up tired from being sick all night and the worst symptom is back.  I have excruciating pain in my lower abdomen... a shade below labor pains.  THIS is the pain that caused me to take Vicadin daily.  This is the pain that led my dr to believe I needed a hysterectomy.  This pain went away in two days when I ate a diet free of sugar.  This pain will go away in two days since I am eating properly starting today.  This is no way to live and I can control this pain if I would JUST EAT PERFECTLY.  It's so hard, but so worth it to feel good!

I am setting forth on a "Live-it" to be documented here.  I have to eat clean and sugar-free from here forward.  It is not going to be easy and I will need lots of prayer and encouragement, but my family needs me to be healthy.  They need me to function...

I can do this!!

Update

My Health Update on my Family Blog...Today!

I s'pose I should give you an update on my health of late.  I am not so anxious to blab on about the status of my health, as it's not so hot.  However, so many of you have asked and thus I shall provide...I need all the prayers I can get, after all!

The week of Thanksgiving I had an endoscopy to verify that healing was actually occurring in my stomach.  I went under with confidence having had great reports from my hematologist that my blood counts were higher than they had been in two years!  The bleeding ulcer had evidently stopped with help of the Prevacid and I was on my way to health with additional iron supplements.  I was THRILLED to not be facing more blood transfusions and without explanation for the need.  I was THRILLED to not have to be poked anymore.  I was just THRILLED period.  It had been a really discouraging time for me.  Discouraging, stressful, humbling...Until that point, I had never been on the receiving end of life-giving blood before.  Truly...life-giving.  The circles my family ran to donate their blood to me were endless and for that, I am truly grateful.  So, do you write a "thank you" note for blood? :)  How does that work?  I am not sure that Emily Post has covered that one before.  I was beyond Thank you note grateful.  Words cannot express it.

When I woke up, my doctor, whom I love, said in his thick accent, "You want me to sugar coat it or speak da truth?"  I told him I could handle it, thinking it couldn't be worse than I have ever been...or not.  He said, "It's bad. Worse! Terrible!" As my heart sank, I was expecting a pat on the back, not this!  He said that even though I had stopped eating the day before around 5pm, my stomach was completely full...to the esophagus.  He didn't even get to complete the study because he feared I would aspirate my food to my lungs and that would have been terribly dangerous...life-threatening, even.  "Life-threatening" has never been used with me before.  I was stunned and broken.  I cried most of the day, knowing I had big decisions to make.

My GI understands my desire to treat myself naturally.  He believes it and he gets it.  But he also wants something to change about my stomach and fast.  He wants me to take the Humira that the GI at Mayo wanted me to take.  Bottom line...I am no where close to having a peace about that. The risks of lymphoma are 1 in 1000 and it doesn't even hope to cure my disease.  It only claims to alleviate symptoms.  I can do exactly that by controlling what I eat and I take on ZERO risk of depriving my children of a mother some day.  Morbid, yet a real thought for me. I know what I need to do.  I know it's hard.  But, I don't have a choice.  I am saying this now so everyone in the world will hold me accountable, but staring January 2nd  (after cheese grits and corn bread :)) I am going back on my major diet.  This time, it's a Live-it.  It is a life change and it is going to be my life.  My life will consist of God-made food only.  No sugars...meaning no breads, no pasta, nothing with an ounce of sugar in it.

I still believe that I have two major problems. I have Crohn's Disease, but I also have a Candida Overgrowth.  Since doctor's don't know much about Candida Overgrowth, it is very hard to differentiate between the two. I think I can.  And, I think if I can go for a year (with MUCH prayer!) eating a yeast and sugar-free diet, then I can get the Candida under control and hopefully many of my "Crohns" symptoms will disappear.  I am not convinced my issues are simply Crohns Disease.

And now...you are posted.  Love to you all.  Thank you for always asking and praying for me.  I cannot do this on my own!

My (In)testi(ne)mony

This was my post in my family blog when I started My Intestine-mony! :)


November 7, 2011


So, you know.  I don't have anything to do these days.  I spend most days laying on the couch wondering what in the world can I do?  Can I please have some laundry to fold?  Oh, please, put those dirty dishes in the sink so I can load and unload the dishwasher. Please, sweet WHS, dump another box of cereal on the ground so I can fill my time vacuuming up your messes.

Funny, I know.  So, in all my spare time, I have started another new blog.  Yes, it's true. If you are anything like my mother, you will say, "WHAT? and WHY???"  This is truly a mission from my heart, a passion and what I have recently come to believe is my calling.  As all of you who read my blog know, I have had a tough road with my health, which I have shared many times here on HOTR.  Because of my sharing it with you, I am so grateful for all of you and your friends who have contacted me for questions and help.  I never thought I had a testimony, but have recently discovered I do...it's My (In)testi(ne)-mony.  I have learned so much about my health and my disease, as well as just how to heal, no matter what your illness.  I am a living example, albeit against the odds, of the lessons I have learned in diet and healthy living.

I am certainly not to the top of the peak, yet, but I am MILES ahead of where I was even two years ago.  Doctors aren't telling people like me the things I now know.  They are trained to give you drugs and more drugs to combat the side-effects of the first drugs.  I think I have a good story.  I certainly have a story of healing that I only wish someone would have told me about years ago.  Had I known what I know now, I know I wouldn't have had to endure a lot of the things I have.  However, had I not endured those things, I wouldn't be who I am today, and I probably wouldn't be so confident to say that God has heard me and He truly has answered my prayers.  I now know in my heart that I have to share what I know, not only to help those who aren't being helped by doctors, like I was, but to share the testimony, I never thought I had.  God is healing me, but most definitely, not in the way I expected it to happen.  He is healing me on His terms and it's pretty humorous to me now to be able to see my rocky road from a new perspective. 

One thing is for certain.  I would never be bold enough to be typing here on my blog God's healing powers in my life if I hadn't been at the bottom of the pit begging for healing mercies...for now, almost twenty years.

So, the veil is lifted and I introduce to you... My (In)testi(ne)-mony

I plan to post as regularly as possible, sharing my diet, my life changes, the highs and the lows.  PLEASE use this as a resource to you or to pass on to your friends.  That is exactly what I want it to be!

Health Update

After long discussions at home about a possible ENORMOUS reconstructive surgery of my stomach, my husband and I visited Mayo Clinic in Rochester, MN....


August 21, 2011


So, we have some good news!  When I had an endoscopy at the beginning of July my GI doctor said he barely touched my ulcer as it was "bleeding like crazy."  After a month of meds, there was no report of bleeding in the endoscopy I had a Mayo Clinic.  I was thrilled to hear this in my follow-up with the GI doctor there.  He was a pretty serious man.  When I said, "That is great news...isn't it?"  He stared at me and I repeated, "That's an improvement, right?"  He smiled and said, "You have lots of room for improvement, but yes, I guess that's an improvement."  He went on to tell me that he believed that if I was on the wagon train to Oregon, I would have made it without a doubt.  He told me that most people in my condition roll in to his office in a wheelchair.  He went on to tell me how bad they looked inside and out. He said I was a very sick girl, yet I looked nothing like them.

That has really stuck with me.  My previous doctor in Tulsa, whom I loved, told me he put me in the "NCS" category of patients....the "Non-Complaining Souls."  I don't say these things because I am trying to be a martyr for the cause or praised for being tough.  I do have pain...and a lot of it.  But, I certainly don't feel close to a wheelchair!  Who wants to be down and out?  I want to be a mom and a good one...and a wife and a friend.  I want to enjoy life!  So, there are probably more days than I will admit that I feel pretty bad.  But, I don't want my disease to define my life.  It didn't click with me until last week.  I have prayed for years, 15 years, for healing.  I know I have had many prayers put up on my behalf from loving family and friends and myself!  On the discouraging days, I sometimes think, "Why can't I be that miracle? God can heal me, so why isn't He?  Why do I have to go thru this?"  Last week made me realize that God IS answering my prayers and I AM a miracle.  I am a miracle in that I am not in that wheelchair Dr. Tremaine mentioned.  I am not miserable.  I am not living my life completely around my disease.  I have had THREE beautiful and healthy boys in the midst of 15 years of a tough illness.  Nobody can tell by looking at me that I am sick.  I have pain, but that can be worked around.  I have found diet as a relief for my pain.  I AM a miracle.  My prayers ARE being answered.  God has heard all those prayers.  I truly believe that those prayers are being answered today.  He is guiding me to this special diet, but I also believe while I have had incredible pain in my life, a lot of pain may have been prevented.

When I left Dr. Tremaines office, I was determined to get him to smile.  As I left him, I turned around and told him that I was, indeed, heading to Oregon and I would see him there.  I am NOT giving up!

He laughed.  Mission accomplished.

Be Positive

July 2, 2011


I have found myself so many times in the last months driving down the road in utter amazement that I can see...all by myself.  What a miracle it is that I can see after being as blind as a bat.  Lasik surgery literally changed my life.  Every day I am grateful for seeing the clock in the morning or not planning my escape in my head if my house caught on fire and I couldn't find my glasses.  I seriously thought about those things.  I planned how I would get each child with my eyes closed.  It sounds crazy...It is crazy, but it's true.  I am so grateful for the seemingly small things.  The days I feel good, the days I have no pain, or days I can see without help.  I very much value the little things.

Yesterday, the nurse at my hematologist's office called me.  Nothing is planned when you have issues with your blood, but everything becomes this massive crisis.  I went in on Thursday for my normal blood tests to make sure my iron levels were in check.  Friday at 3pm, the sweet nurse called and said I either needed to repeat the blood tests or get 2 pints of blood immediately.  I raced down to their office to repeat the test before they closed for the holiday weekend, but I knew in my heart the first test was correct.  She told me my hemoglobin was at 7, when it needed to be at least double that.  When we had our last "crises" in October, my hemoglobin was at 6, not to mention my stored iron, or Ferratin, was almost non-existant.  My tank was on empty and I was really feeling it.  This time, not so much.  But, I know it's coming.

Of course, it's the Fourth of July weekend, with Monday being a holiday.  Everyone is in panic mode and it absolutely kills me.  I feel fine, and yet one call has turned our house upside down.  According to Babe, I am on death row.  We jumped through lots of hoops since the confirmation call early this morning that I, indeed, needed the transfusion.  I zipped to the hospital to get my blood cross-typed to prepare for my transfusion.  Between the amazing on-call nurse at the hematologist's office and Babe, the un-doable was done and Babe was already allowed to give blood today (a holiday Saturday) and designate it to my cause.  I cannot stand the thought of taking stranger blood at this point.  The paper work they give you to sign your life away to possible AIDS, HIV, and Hepatitis is overwhelming.  The first time I saw it, I immediately started bawling thinking of my sweet boys and yet "agreeing" that it was OK if I contracted any of those diseases accidentally through the transfusion.  HOW could I take that risk?  So, my amazing family jumped in head first and donated blood and came to our rescue.  The fact that it is happening again, just 9 months later, tears me up inside.  That others are having to drop everything to help me makes me so sad and really, just mad.  I know everyone loves me and wants to help, but I just want to be normal. Normal!

So, with that pity, I just recently told a friend :) to choose your time to grieve.  When that time is over, you have to focus on the up side.  Today, I am grieving and feeling the anger and the sadness and the "Why?" most importantly.  Why can't my body keep up?  Why can't my blood sustain itself?  Tomorrow, my time is up.  I will choose to be positive...tomorrow.

I asked JBS if he wanted to go with me this morning to the hospital.  I am on the fence about keeping him in the dark versus including him to help him to understand that I am OK.  I know he knows more about my health problems than I give him credit for and I would rather him see that giving my blood for testing doesn't hurt me and I walk away just fine.  As we drove into the hospital parking lot, my blood type kept coming to my mind: B+.  Over and over I said it like a broken record, B+, B+. B+ to the point where it actually sunk in.  I think it was God's little way of reminding me to "Be Positive".  He can handle this and I am just along for the ride.  Wow.  As emotional as this day has been for me and the feelings of hopelessness I have felt today, the feeling of sitting back and letting God handle it is more powerful than anything I have felt in the last 8 hours.  We serve an AWESOME God.  While I know this is my trial and my lessons being learned, the feelings of hope are too strong NOT to share.

So, the questions remain, "Why the heck do I have a problem keeping my hemoglobin in check?  Why does my ferratin continue to drop and require iron transfusions? What is going on?"  With all the crazy issues I have had in the past few years, I have slowly come to terms with the fact that I don't have good health.  BUT, I certainly plan on taking back that victory soon.  My parents have continued to encourage me to seek help from a place like Mayo Clinic where all disciplines work together to achieve an answer and evaluate my body TOGETHER. I finally agreed.  That process has begun, so I would SO appreciate prayers for timing, availability, answers, healing.  There are so many things to be excited about...so much hope!

This chapter is not complete.  I will certainly keep you posted.  Is it terrible to admit that I am actually quite excited at the possibility of walking on the Mayo Clinic campus?  I always dreamed of working in a huge medical complex.  These are the things that get this nerd excited...

Penny-Care

February 16, 2011


I had what I now believe to be an unnecessary hysterectomy in January 2011.  The pain in my uterine region was blinding and I found only partial relief on Vicadin.  My OB/GYN told me my uterus was just getting old (at 36 years old).  After the surgery was over and I was recovering...the pain was still there.  I jumped back on the Candida Diet and two days later, for the first time in 4 months, I didn't have excruciating pain.

I am in my fourth week post surgery and my fourth week of "Penny-care."  There is no possible way to thank my mom and Babe's mom for all the work they have done in the past month for us.  My surgery went as smooth as possible and my recovery has been relatively easy.  The only problem is that I can't lift more than 10 pounds for 4-6 weeks.  This is a small problem when you have a 25 pound WHS wanting to be held and lifted all the time.  So, Grammy and Gambo in alternating weeks swooped in to save the day.  Slave labor, I tell you.  It is an especially exhausting job to raise three boys if you aren't used to a day in the life.  Each night we sent the grandmothers to bed completely exhausted. 

JBS and JLS are pretty easy.  They keep entertained with each other playing superheroes and in the back yard playing ball. WHS, on the other hand, is in constant motion (and digestion)!  In the first week post surgery, WHS decided to climb out of his baby bed, give up his high chair and climb on the bar stools for meals and he FINALLY started walking full-time.  (Praise the LORD!)  Oh, and the other HUGE thing is that WHS eats....constantly!  If he sees the pantry door open from across the room, immediately, you hear the pitter patter of his cute little feet walking as fast as he can to sneak in the pantry before the door closes.

Sweet WHS was a bit excited and out of routine with all the new "helpers" in our life.  On several occassions, we found him with his head down resting on his cute little hands....asleep.  This little guy is so smart.  My JBS and JLS are smart kiddos, but I will say that they were not as clever as WHS at this age.  There did, however, have much better motor skills at 18 months.  We are a house that loves the Sinu-Rinse when we are sick.  JBS, JLS, and Babe are regulars with their terrible allergies.  Maybe you can tell what WHS spends his time watching.  He will be a Sinu-rinse champ in no time!

So, the last few weeks have been lots of fun with Gambo and Grammy being here and very nice having so much help with meals and the kids.  While I refer to this time as "Penny-Care", it really has been "WHS-Care."  He is really going to miss being smothered in all the grandmother love.

I am definitely feeling great and hopefully some of my crazy health issues will be resolved s/p surgery.

Recovery

(Re-post) December 19, 2010


(continued from 12/18/10)

I was out of work and at home with my parents for six weeks.  For anyone who has had abdominal surgery, it is no easy task to recover.  I had to work hard on that awful lung machine.  It hurt to cough, sneeze, breathe...If I coughed or sneezed I had to push a pillow on my tummy to help the pain as much as possible.  I had to practice blowing on that breathing machine multiple times a day and I hated it.  I could have skipped it, but I knew if I didn't do it, I would regret it and take longer to heal.  I also had to push myself to exercise.  One certainly doesn't get better sitting on the couch.  At first, I was just walking room to room and around the house, but gradually moved to taking short walks outside as the weather permitted.

I slowly worked in to solid foods, ever so slowly.  One day I ate scrambled eggs, which was thrilling, but within a few minutes it hurt so bad.  It was almost unbearable pain as the eggs scraped past an internal incision.  For the first moment in all my life, I actually considered "What if I die?"  "What if I don't make it?"  That weighed heavy on me for awhile, as I contemplated the fact that had I lived even a few years before my time, how would they have treated me?  How would a person like me have healed?  Would I have healed?

As much as I loved my job, I knew that for my health's sake, I needed to change jobs.  My job was so physical, lifting patients and being on my feet all day.  As it was, I had to return to work with no lifting for another month.  I felt useless.  I did go to a job interview, one that I didn't get, while I was on my last week of sick leave.  I will never forget having to buy a suit that concealed the fact that I still had a feeding tube in my stomach.  Yes, I went to an interview with a feeding tube and had they known what I had been thru six weeks prior, they would think I kicked butt on that interview for sure!  It just wasn't meant to be.

What I didn't know at the time was that when my surgery was complete, my surgeon came to my parents in the waiting room shaking his head after working on me for five hours.  He said he did all he could do, but there just wasn't enough time to do everything he needed to.  More than likely, I would be back in for surgery in the next month.  Gratefully, he did enough for me to get by for another 15 months before my next surgery.  Little by little, my problems returned and worsened and I knew I was heading for another surgery.  I remember talking to my GI doctor on the phone at work and he said, "It's time" and I burst into uncontrollable tears.  Abdominal surgery was the hardest and most painful event of my life and now I had to do it all over again.  I was devastated.

So, I had surgery again to remove another 12-18 inches of my small bowel.  If I was looking for perks, I could say that I didn't have to have a feeding tube, but I had to have an NG tube...not sure which is worse.  While it was still open abdominal surgery, it wasn't as lengthy or emergent and there wasn't as much work to recover from.  And, I knew what I had to do and I knew how long the healing process took.  One thing was for sure, I promised myself I would never have surgery again.

Transfusion Day(s)

October 10, 2010


After we got the boys to school Friday morning, Babe and I headed to the hospital to get my much needed 2 pints of fresh blood.  Gratefully, Babe's parents were still here and we left WHS in good hands for what we thought would be a few hours.  The hospitalist had told us, "Just call this number when you get here and we will admit you on an out-patient basis to receive your blood."  Boy, do doctor's not know what it really takes to get admitted.  Hours, my friends.  No one knew I was coming, my orders were only partial and the "admitting" doctor was not my doctor at all.  He was a hospitalist and no one could find him. While the search for this doctor begun, my stomach started hurting again, out of the blue.  The same pain that took me to the ER just a few days earlier.  Gradually, over the couple hours of waiting to be admitted, it got worse.  By the time I was admitted and taken to the out-patient infusion center, I was near tears because the pain was so great.
The nurses looked at me and said they couldn't give me blood if I was in pain, they called the ever-fleeting hospitalist and admitted me, once again.  More tears.  I am not afraid of the hospital, I worked in the hospital, but I can't stand being away from my family.  I cannot stand the thought of the boys hearing that I am in the hospital and worrying.  We had a full weekend of activities and I was being admitted to the hospital and I couldn't hold the tears back. 

This time, at least, I got to walk to my room.  I crawled in the surprisingly comfortable bed and let them admit me for the second time in the week.  I went to the hospital at 10am and finally by 4pm they had started an IV and started my drip.  First, my mother-in-laws blood ran through my veins.  Four hours later, Babe's blood began to be infused.  Gratefully, I had none of the potential side effects and the transfusions went smoothly.  My parents are convinced I will acquire Babe's chronic allergies, but other than that, no side effects.  By 2 am, the last of the 2 pints was in my body and I waited for the fabulous effects.

During the time I was getting blood, they had me drink contrast for a CT scan that was later cancelled.  Thanks for that extra barium in my body.  Babe took JBS to a baseball lesson and they dropped by to say, "Good-night."  They rushed home so they could make it to our neighborhood movie night on the cul-de-sac and I settled in for the night. 

By 8am the next morning, I hadn't heard from Babe, so I called to check on him.  His barely audible voice on the other end of the line told me it was bad news.  While he sat with me at the hospital around dinner time, he ate a hospital sandwich....the culprit.  He had been up all night with food poisoning and I could hear the desperation in his voice.  Once again, grateful that Gambo and Poppy were at my house taking care of my children, I called our doctor's office to get something to stop the throw-ups...from my hospital bed.

That day was picture day at for both boy's baseball teams.  I am team mom for JBS' team and everything the team needed was sitting on my kitchen counter...all the photo money, photo forms, banner they hold in the picture, line-up cards and time was ticking away.  The nurse wasn't particularly sympathetic to my situation and no doctor had been to see me.  When I realized I just wasn't going to make it, I managed to steer Gambo to our coach's phone number and I was gratefully able to reach him. He graciously drove across town to pick up everything and gave us a sympathetic laugh and said, "It can't get worse!" Funny.

Once that was handled, I moved on to trying to get both boys to their baseball games with Babe hugging the toilet.  Ultimately, Gambo and Poppy took all three boys to the family wedding they were ultimately here to attend.  They loaded everyone up and drove two hours to the wedding for the day. About this time, the nurse gave me Reglan.  It is a stimulant that moves food through the stomach, as the previous night's X-rays told us something was wrong.  Within minutes, I started to have an anxiety attack.  I have had this once before...after I was given Reglan.  It is now confirmed, I will not take Reglan again.  That is a very unsettling feeling with no control over my body, constant anxiety and everyone I wanted to see was somewhere else.  It was a hard couple of hours. In the midst of all this, I had an upper GI scope which revealed bigger problems:  my food wasn't leaving my stomach because it was inflamed and I had a huge ulcer at the exit.  This is my man-made exit s/p surgery ten years ago.  Really?  I thought it couldn't get worse.

The very kind GI doctor that was from my doctor's clinic, came to see me after he did my scope.  He knew I wanted out of there, albeit almost 4pm on Saturday.  He told me I had problems, he would agree to let me go home if I agreed to schedule another Upper GI scope and colonoscopy in a few weeks and take the medicine he was discharging me with.  No doubt I agreed and told him to, "Get the discharge papers started!"

Then, I realized Babe was passed out from Phenergren at home and my in-laws were with my boys two hours away.  I called Gambo and Poppy to swing by the hospital and pick me up as they passed by on their way home.  As it worked out, I was escorted to the curb as they drove up.

The end.  Over and Out.  I have been praying for TOTAL healing every since.  I believe it can happen.  I know it can.  However, for those of you with good health, never ever take it for granted.  It is truly a gift and a gift I would do anything to  have.  Good health for me so I don't have to leave my family again.

Bringing You Up To Date

October 7, 2010


More Daily Life from my family blog...
So, it's been a crazy two weeks.  I had no intention of alarming anyone last week when I posted my gratefulness for my family members who were donating blood to my cause.  I had to be crazy to think that wouldn't cause alarm and I am so sorry.  So here's the story...

Three weeks ago, Babe had a stomach ache for three days with no other symptoms.  As soon as his was over, I acquired it.  No other symptoms other than pretty excruciating pain.  Thinking it was just a virus, I tried to focus on other things.  On Day Eight of my pain (Sunday night/Monday morning), I woke up for the last time in the night with pain.  I couldn't take it anymore.  It was intense.  I told Babe I was driving to the ER, as he and the kids were in bed and I could get a doctor visit in without anyone's schedule being disrupted...ha!

When I arrived at the ER, they immediately took blood and did a CT scan of my belly.  These things I am no stranger to with my history.  If a girl walks in to the ER with a history of Crohn's disease and abdominal pain, everyone assumes the pain is Crohn's and shoo's you on.  This is not what I wanted.  After a few hours of being in and out of sleep, the doctor came in and said, "We admit you, Mrs. S".  I barely understood his accent. I shot up in bed and said, "But why?"  He looked so serious and said, "You need blood transfusion now.  It is serious."  This was not part of my plan.  On top of messing with my plans, I was at a satellite ER.  They would not let me drive to the hospital.  So, I had to take an ambulance.  It was so embarrassing.  Awake, talking and walking, but they strapped me to a bed and hauled my hiney to the ER in the main hospital via ambulance.  My boys would have been in heaven for that ride.

There were lots of tears, I will not lie.  They went from thinking that I had a GI bleed, to finding more peace that my Hemoglobin, which was a 6, had not gone from the normal 12 overnight.  When they were able to see my blood records, they were able to see a gradual drop over time, but they still had no idea how I was a functioning person.  Everyone kept asking, "Aren't you tired?"  Heck yeah, I'm tired!  I have three boys, including a baby.  I am EXHAUSTED!  But the red flags my body must have been throwing up were confused with being a busy mom.  It was pretty serious and I was scared.

They wanted me to get two pints of blood immediately.  When they put the form in front of me to agree to all the risks, I burst in to tears.  Did I tell you it was a tearful morning?  I was about to sign a paper that said it would not be the hospital's fault if I got AIDS or HIV or Hepatitis or a whole list of awful things.  I know the risk was low, but it was an unknown and the risk sounded huge to me.  Since we discovered that I had been sitting at a "6" for awhile and the need for blood was emergent, but not necessarily a need in the next few hours, we chose to wait for Babe's blood to be processed for me.  He was a match, as was his entire family.  They are all O+ should you need blood at anytime.  They have rich blood.

Babe's parents were already coming down on Friday for a family wedding, but when they spoke with Babe Monday morning, they sensed that Babe was freaking out a little and loaded up on a moments notice and swooped in for the rescue.  I was thrilled as I worried less about Babe and the boys and more about figuring out my crazy health.  As it turns out, I needed another pint of blood and both Babe's parents were O+ as well.

By the time they arrived, Babe had already donated his blood for processing.  The next morning, I took them both to the blood bank to donate blood for me.  It was a surreal feeling to be sitting in the waiting room with them behind closed doors donating blood...for me.  Very  humbling, very scary to be facing the imminent need for blood and I was very grateful for my family to donate more familiar blood with fewer risks involved.  The only red flag Babe had was that is was a little unsettling to him that his mom's blood would soon be running through my veins.  Yes, it is a strange thought.

Blood takes 3 days to be processed.  So, we enjoyed Babe's parents being here with us and the kids and waited for Friday to arrive.  Friday was blood day.

An Unlikely Window...

Before I started My Intestine-mony, I occasionally posted on my family blog about my health.  It's interesting to look back and see how much I have learned in just a few short years!  Here is a post from almost 4 years ago...


February 27, 2008


...into my heart.

I don't like to talk much about my health, but I know lots of my friends are struggling with health issues, too. It helps sometimes for us "sickies" to lean on each other. I am sure I have mentioned before that I have Crohn's Disease. That has been a long journey, but I have prevailed through lots of ups and downs. God has given me something to talk about. My illness has shaped who I am, how I handle hard times and how I use those times to help me grow in my faith and as a person. The opportunities I have had to help others have been endless and I know God will give me plenty more chances to use my illness to relate to others in His time. I look forward to that. When you are really sick, you get a new and very mature perspective on life. I consider myself very lucky to have received this perspective at such a young age.

On that beautiful and courageous-sounding note, I got a double whammie in the last two days. I have not been feeling well since Christmas, so while I was home last week, I got to see my favorite doctor. I love him because he knows when I complain I am at my wits end and he knows if I am complaining to him that I need help. So, he ran some tests, drained me of my blood and determined that not only do I have issues with my thyroid (easily solved, I think), he thinks he has discovered that I am beginning to have Gluten Sensitivity (easy to solve if you don't like food!) This, of course, is on top of Crohn's Disease and a recently acquired fructose intolerance.

Hmmphf. Well, at least this provides an explanation to my complete and utter exhaustion. So, I should be grateful for this discovery and chance to improve my quality of life. I am. I know these things might seem small, but all added up, it is just frustrating for a girl who LOVES food. Our lives revolve around food...dinner with friends, making cookies with the kids, Christmas, Valentine's, and Easter candy. Fourth of July cookouts, Girl Scout Cookies, big thick succulent steaks...can you tell what I miss? I will deal with these cards as I have before...prayerfully and with faith that God can heal me. I can't remember exactly how she said it, but my dear friend, Casey, said something like this about another friend of hers. God provides healing for us when we ask...it can be earthly healing or heavenly healing. God heals on His terms...for His purposes.

These days, I find myself praying to make it thru a day. One day at a time...and I am still here! I worry when it starts to affect me and how I deal with the boys or when I am just too tired to lift another finger and its only 3pm. Unfortunately, of late, those days have been far too prevalent. So, like a recession. You don't know it was recession, until you are out of it. I am hoping I am trudging up the backside of that little graph as I write.

I have life. I have a beautiful and healthy family. God has given me and my children the ability to talk, walk, see and hear. We all have so much to be grateful for. Don't take for granted even one day of your life. We all have our roads to hoe, but we are only here on Earth for a very short time. Make the most of every opportunity.