Ups and Downs

I don't think I ever thought in October that I would still be battling for healing in December.  I guess I assumed the new meds would be a miracle and abracadabra me into perfect health.  I was wrong.  I am still learning to be patient, but fear is creeping back into my thoughts.  I fear that "What if" the Humira doesn't completely heal me?  "What if" I STILL have to have surgery if those spots that still hurt are actually scar tissue? "What if" nothing gets me further along than what I am now?  OH, how I can think of the "What if's" and really spiral downward.

The fact of the matter is that after I wrote my last post, I went right back to ground zero after enjoying Thanksgiving dinner.  It was fabulous food, but it wasn't even close to worth the return of the pain.  I was so careful not to eat bread and only eat things that were soft and smooth.  The only guess I have is that it was a salty meal, which probably retained water and aggravated the already existing inflammation in my gut.  OH, the pain.  I went back on the pain pills that I so proudly had not taken in at least a week.  I went back to bed and I went back to being non-functional for at least two days.  I was SO mad!

I have had at least one more sleepless night since then.  I keep reminding myself that I am having BY FAR more good days than bad days and I must stay focused on that huge fact.  Maybe its just that.  Maybe I should still expect some bad days {gulp}, but continue to recognize that there are far more good than bad days.  

Next shot on Saturday.  Praying for MORE healing, more energy, more peace and continued protection from adverse effects.

But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.
—Philippians 3:20–21 

AMEN!!

Happy Thanksgiving!

Everyone in my house is asleep at 9:11pm....I love it when it's quiet like this.  I am watching the TCU game {GO FROGS!} that we were all really in to when it began.  One by one each precious little boy drifted off to sleep and Babe and his parents disappeared to their rooms.  As I carried/dragged the boys into their beds I was overwhelmed with thankfulness.  I love them so much.  I hate that so much of OUR lives have been affected by my status and I struggle with a lot of guilt at times that I can't or haven't done things for them because I have been too sick.  I am SO thankful that I am on a good road. I feel for the first time in years that I am on the road to recovery.  Praise. The. Lord.  I don't know why it is taking SO long, but I am thankful for the progress I am making.  I am thankful that I actually ate food today.  It still hurts, yes, but it's not an "off the chart" pain.  I am thankful for my mother-in-law who helped prepare our meal and never said anything when I disappeared to my bed more than once to rest and recoup.  I am thankful for our family that was here today and thankful for my family who wasn't here.

This year, I am thankful for the little things.  When people say "Here's to health & happiness" it means so much more to me.  Health is something we all take for granted until we don't have it.  And when we don't have good health, it affects everyone around us.

I am so thankful for my health.  And beyond thankful for my friends and family that have seen me through the last very difficult two months.

HERE is to Health and Happiness!

Ironically, my sister was diagnosed with Celiac Disease a few months ago.  I think this cartoon my mom sent aptly describes our future dinner table...

p.s. 3rd shot arrived and I will get it on Saturday :)

Darn It!

I have lost count of the days that I have felt pretty good!  How amazing is that?  I am probably on Day 4 or 5.  I still have a specific location that I refer to as my "3am" pain.  If I have had any type of full meal at dinner vs little meals, at 3am I wake up to some pain.  Not intolerable pain, but enough that wakes me up.  These days, I don't know how to measure pain, as I am sure my tolerance is pretty high of late.  I have noticed that some days I feel like I am walking on air.  It's surreal.  It's like the pain was so intense that it just held me down and as it lightens, I feel so light!

Another point to note is that one day last week I lost 5 pounds in one day.  That's not normal for me, at all.  It was the first day I felt sort of "out of body" and the best I can explain it is that the inflammation was going down because the drugs are finally kicking in.  I have been bloated for 20 years.  I know that sounds crazy, but with all my GI issues, my stomach is always puffy or bloated.  The first time I ever felt not-bloated was when I did the Candida Diet.  It was remarkable.  That day, the bloating went down, I felt better, I lost weight.  My guess is all the water-retention that is caused by inflammation went away that day.  I'll take it!

SO...the "darn it" part is that I am not out of the woods.  I went to JLS' baseball party for an hour last night and ate a sliver of pizza. I mean a SLIVER.  I chewed well, but MAN it tasted good! :)  By bedtime it was the heartburn and pain, resulting in a pain pill (which I haven't taken in days), and up most of the night.  UGH. The pain is always in my lower right quadrant which makes me SO nervous that it is a more permanent stricture that won't be helped by the drugs.

I am getting more energy every day, wearing myself out in a good way.  I have biked to school 3 times now and it feels SO good!  I drop to the floor when I get home, but it's just the push I need to build my endurance.  I am skipping naps, which is actually hard to do.  But by doing that, I am ultimately helping myself sleep better at night....most nights.

Definitely measurable improvements, definitely still a ways to go.  BUT, what an incredible miracle to be sitting here today typing with NO pain in this moment.  A far cry from where I was a month ago.  I actually get teary thinking, "What if?"  Where would I be without these meds?  Would I survive?  It actually really gets me choked up to think about and very appreciative of Humira, whether its my first choice or not.  It's allowing me a quality of life that I was no where close to having 5 weeks ago!

God is good.  ALL the time!

Four Days and Counting!

In four days, I have taken one pain pill.  HUGE accomplishment!  I can't describe the relief in pain any other way than I feel like I am dancing on air.  And, Lord knows, I am not a dancer! :)  I feel like a huge burden is being lifted from me and I can feel my world lightening up.  PTL!

The only time I took a pain pill was after I ate something with bread.  I know I shouldn't, but it also helps me gauge the inflammation.  It's really the only way to measure improvement without looking inside of me.  I wasn't doubled over, it wasn't excruciating, but it was enough that I couldn't sleep...and I really wanted to sleep!

Yesterday, we had a big day and I was bracing for it.  First and foremost, I took my second round of shots.  I was up with Babe and JBS early, so thought I should shoot myself with an adult around...just in case.  I am thrilled knowing more medicine is at work in me now.

Babe and I had to split up with the boys and in a big way for someone who really hasn't been allowed to drive until this week.  Babe left at 5:30am to take JBS on his Boy Scout Camping trip while I stayed home to take JLS to his baseball game with WHS.  We left for that at 11am.  After the game, the plan was to drive JLS one hour to the campout so he could camp, too.  Then, WHS and I were to return home to sleep in our cozy beds and relax.  It all worked, dropped JLS off and as soon as we hit the front gate of the camp, Babe called to say that JLS was throwing up.  UGH!  I had bragged to my friends at the BS Camp about putting WHS to bed early and having the night to myself to stay up late with just me and my laptop.  I was SO excited.  But, I couldn't leave JLS sick in a tent and I couldn't leave Babe alone with JLS sick in a tent.  So, we returned to get JLS.  Poor guy.

The GPS told me our return home would be 50 minutes, which turned into 1 1/2 hours because of the traffic from the Renaissance Festival.  Stand still traffic.  JLS' tummy hurt and I was dreading vomit in the car and WHS kept telling me he had to poop and there were no bathrooms in site.  It was a LONG trip home.  We stumbled in the house, sent the boys to the bath and an AMAZING friend had left a complete meal on our door step.  The timing couldn't have been better.  I cried. I know it sounds crazy, but that day completely and utterly exhausted me physically.  I am still such a lightweight and I can't stand it!  I shoved food in the boys' faces and put WHS to bed by 7:15pm  {hallelujah!} I let JLS sleep on a palette on my floor and I crashed.  There were no up late accomplishments, no laptop. I fell into bed after a hot bath and was out by 8:30pm.

Pha-ew.  Today is a new day!  And hopefully another day without pain and WITH healing.

Plugging Along!

Thank you so much for all the sweet messages asking how today has gone.  The last 6 weeks have been surreal.  In the midst of great pain, I was continuously made completely aware at how blessed we are.  How many people care that my family functions and eats and sleeps.  The countless cards that arrived when I needed them most.  I am still in awe of it and so so appreciative and feel so loved and taken care of.  Thank you.  Thank you.

So...Day 3 of no real pain.  THAT hasn't happened in weeks...months, in fact...possibly years.  I still get a shooting pain at times, or a dull pain for a few moments, but nothing that I can't handle.  No anxiety today....and I hope never again.  I did eat some bread today, which I typically have to avoid, but I always want to push a little too far.  So far, so good.  The real test will be at 3am.  Not sure why, but that is always the telling time.

Another good sign.  I actually got a few things accomplished around my house today.  Not big things and most would think they were nothing.  However, I have almost turned into my 8-year-old in that I find myself unable to function and staring off into the distance a lot.  I just don't know what the next step to take is...sometimes its thru the pain and sometimes it isn't.  It's a a feeling that my body can't do as much as I would like and it's telling me, "No!" and going on strike.  The first thing I accomplished was getting my records transferred from the doctor in Houston to my GI doctor here.  I fully recognize that UT Houston is the hubbub and all, but man, the patient care has been far from acceptable.  From stuck in their office for 5 hours, to calling every day for 2 weeks to get the proper forms completed for my Humira and this week calling EVERY day to get a refill on my prednisone.  I didn't want it, but you can't just quit steroids.  I don't know if they are too big, if its the doctor, or the nurse.  Either way, I want to run into Dr. Dural's open arms and tell him I am home again!

The next accomplishment, and it was an accomplishment, was getting the Houston doctor's assistant on the phone to instruct me HOW to wean off the prednisone.  I know I am not completely ready, but I also know it will take some time to come off of it.  I am tired of being irritable and puffy.  So, as of tomorrow, I will start the weaning and it will take 2 months from the dose I am on now.  At least the end is in sight!

The other good news is that transferring my Humira from our old insurance to our brand new insurance was as easy a pie!  I called yesterday to initiate the process and they called today to confirm.  I didn't have to do a thing.  While I already have my 2nd round of shots for tomorrow in my fridge, the new dose will arrive next Tuesday, in plenty of time for Round 3.  Even better, they confirmed that this ridiculously expensive drug will continue to be $5 each shot for the first year.  I reluctantly asked what it would be if I didn't have this special Humira card and she said, "$35."  Amazing.  Kudos to our new insurance.  I hope it lasts...

Here is to a good night's sleep...even thru 3am.  Fingers crossed and prayers said, I am off to bed!

Trying Not to Be Cynical...

I have had TWO days in a row that have been relatively good!  I don't think that has happened, yet, and I am trying not to expect anything but the same for tomorrow.  It's hard, though.  I like to think I am pretty rational and after battling Crohn's for 15 years, I have a pretty high pain tolerance.  However, the intensity and longevity of the pain in the last month has been so great that I have found myself in moments of real anxiety fearing the pain.  If I feel a twinge coming on, even if it's not really bad yet, I start to get the shakes and sweats and my heart starts racing.  I feel real panicky and I get fidgety.  Anyone want to diagnose me?  I am guessing its my fear of the intense pain, as too many times, my pain pills couldn't touch it.  A bout of anxiety, for sure.  It's not a good feeling.  I have great sympathy for anyone who struggles with true anxiety issues.

The good news is yesterday was pretty good.  I pushed myself a little harder energy-wise and didn't push myself food-wise.  The combination was a good one.  By 3:30pm I was ready for bed and didn't allow myself to nap until I dropped dead in bed at 8:30pm.  I wasn't sure I would make it, as mentioned above.  When I get over-tired I start getting shooting pains in my lower abdomen.  I don't know why, but it's always when it's time for nap or time for bed.  Admittedly, I took a pain pill at bedtime, but it was the best night sleep I have had in a month.  I was tired, I slept hard and it felt good :) Wonderful.

The crazy part about yesterday, which sounds absolutely ludicrous, is that I bought a darling stationery company... Write Away.  It's a fun story, but the closing was supposed to take place right as my health went terribly south.  We rescheduled twice, which I can't say enough for the kindness and understanding of the girls who sold it to me.  And yesterday was the day.  I used to laugh that my best exercise has become riding my kids to school on the bike, as that has been about all I could handle recently.  Now, I wish I could do that!  Getting showered and out the door to the lawyers office wore me slick!  I am thrilled, though, beyond words, that I didn't have anything to set me back in the moment.  It all went without a hitch and no one there new I was sick:)  (So if anyone reads this little blog, you can buy some really cute gifts for Christmas!:))

I somewhat expected today to have it's white flags, with all the activity yesterday, but here I am! I am still surviving on steroids which is starting to work to my advantage if I continue to feel OK.  They give me energy that I don't have on my own.  I was able to make it up to the school with WHS for JLS' 50's party and we survived.  I was able to work a little around the house, between rests, but it sure felt good to at least attempt to regain control of my house.  Still a long way to go...

I look forward to tomorrow, as all the boys are in school and I know it's a needed day of forced rest.  I don't want to take any more steps backward, only steps forward.  It's a bit ironic that the last time my doctors mandated forced rest on the couch, I started Tippie Toads from my laptop.  I was still on the couch!  Now, I bought a stationery business.  I can't take on anything more.  So, no more couch-rest!

As for the drugs, I take my second round on Saturday and am actually looking forward to it.  This time I only take two injections.  Then, I will continue with 1 injection every two weeks forever...or until there is a cure...{yes, please!}

And lastly, since Babe started a new job, we have new insurance since this fiasco began.  So, today, I initiated the transfer of the Humira to my insurance.  Gratefully, I already have my second dose in my fridge.  Surely...SURELY it cannot take as long as it did to get the first round.

Highs and Lows

Aargh!  I really want to give that my best pirate voice..."Aaargh!"  I know very well that this process is taking MUCH longer than I am comfortable with.  I am OK with the slowness of my life, for the most part.  I am OK with taking a nap most days:).  I am even OK with spending more time around my house.  It always feels good to slow things down when I feel like I have said, "Yes" to more than I should.  What I am growing frustrated with is the pain.  It's so frustrating to have a pretty good day and feel like I am making progress and then from left field, "Bam!"

Another mention of pain that I think I overlook a lot, but is probably so so common with GI patients is pain upon movement.  Not sure how else to describe it.  I can sit up and bed and think I feel pretty well.  Then, the kids jump in my bed to snuggle or my littlest toot will waller on me and in a second I will feel bad again.  It's the kind of pain that I probably deal with most on a daily basis and I always say I am "Ginger" when Babe asks how I am feeling.  It makes me walk "Gingerly."  It just causes me to slow down as the pain can strike as something really intense or stay dull and chronic for some time.  I can't explain it.

So...on Sunday morning I woke up feeling well.  I sat on the edge of my bed and still felt well.  We went to church and I felt great!  Babe even commented how good it was to see me smile.  I felt that, too.  I felt like I was more relaxed and easing back to my old self.  I was really thinking, "This is it! The drugs are working!"  I am sure that excitement allowed me to eat things I shouldn't.  When I say "shouldn't" I just mean solid food.  Bread is out of the question for me, as it can block my stomach easily.  I try to eat things that are easy to chew and have to focus on chewing chewing chewing.  Even still, if it can't pass it can't pass and Sunday night was miserable.  I was so discouraged as I sat up in my bed on my computer trying to focus away from the pain....1pm, 2pm, 3pm.  I took a bath at 3pm hoping for some relief on top of 2 pain pills back-to-back.  4pm, 5pm and the boys were up.  I never slept.  I can't even say I pulled all-nighters in college.  So, the cycle continued.  When I am overtired, I get other pains, but I couldn't sleep through the pain.  Monday was miserable simply for recovering from Sunday night.  Can I get an "Argh!"

I was really hopeful to be getting off the steroids, but after that, there's no way I can.  I won't be able to eat at all and be right back where I started from, it seems.  I will get my second round of shots on Saturday.  I am hoping with that additional push of meds that it will help take more of the inflammation away.   I guess my fear is that some of the strictures that cause the most pain are scar tissue and won't be healed by the medicine.  If that is the case, then surgery is still the remedy to remove those strictures. However, now that I am on an immunosuppressant, surgery becomes even more risky because I won't be able to fight infection properly.  And there is where my mind runs wild.  I just can't let my thoughts get lost in the "What if's."

So...the progress goals are these.  I should feel the effects of the medicine by 1-2 weeks.  And I do feel that I am feeling some good effects.  By 3 months, I should reach maximum results of the drugs.  So, the way I see it is by mid-Jantuary I should know if there are permanent strictures.  That is my prayer.  No scar tissue and all inflammation to disappear.  That doesn't seem like too steep of a request, does it Lord? :)

I just keep telling myself to be still.  Just be still and stop trying to control.  Be still and let my body heal, as there is SO much healing to take place.  BE STILL.

Be still and know that I am God.  Psalm 46:10

What's the Pain Like?

I have had several people ask about the pain.  Oh, the pain! :)  This could be long...

Just a little history... most people with Crohn's Disease have a diseased colon, which causes chronic issues with needing to go to the bathroom which leads to malabsorption, weight loss, and lots of pain and fatigue.  I am in a very rare group of patients that has a beautifully healthy colon.  (Blessing #42) My doctors are always impressed!  Unfortunately, what makes me even more rare is that my stomach is affected.  I didn't know this until I went to Mayo Clinic last year, but I have the most severe form of Crohn's Disease BECAUSE it affects my stomach.   Most of the research involves the colon and small intestine, which means most of the drugs for Crohn's target the more distal portions of the GI tract.  This is why all the medications I have taken in the past have not worked for me and why I need a medication like Humira that is more systemic.  My issues lie in the front side of eating.  The inflammation in my stomach is so severe that my stomach is completely swollen shut, thus I have difficulty with my food getting down and often coming back out.:(

When I was in the hospital this month, and I had to go for the eternal scope, they anticipated the food retention from what I told them about my history.  They put me completely under, as opposed to the regular "loopy" so they could put a special tube in to remove food from my stomach.  At that point, I hadn't had ANYTHING more than chicken broth in 8 days and they spent 4 1/2 hours removing food from my stomach with a grabber contraption.  The in and out of the equipment, of course, is what tore up my throat and caused secondary bleeding and trauma.  Eight days of opportunity for that food to pass and it never did.  That is something a normal person does in a matter of hours.

As a drug rep, my sister was in training for a new GI drug.  The instructors told the reps that people with GI disease can feel their food at any stage from top to bottom.  Wynne said everyone was in disbelief when she raised her hand and said, "It's true!  My sister knows where her food is at all times."  They couldn't believe it.  To think of what a miracle it is to have a healthy body and NOT know those feelings.  I think "my Crohn's people" won't mind me speaking for them, but while you are counting your blessings think of even the small ones:)  My favorite GI in the world who took the utmost of care of me told me that when his Crohn's patients talk, he listens intently. He went on to say that people with Crohn's were the most aware of their bodies of any patient he had because of our ability to know and describe multiple feelings in our guts.  I am sure this is a dream to a GI doctor, as a normal person doesn't have those feelings.  Now, if there was a way to make money with those feelings...

The feelings I have are not one, but many.  To start, when I eat something solid, I feel it enter my stomach, as it passes the end of my esophagus.  That is because I have a hiatal hernia from all the inflammation in my stomach. Throughout the day, I can feel my food rumbling around in my stomach, which apparently stays there for weeks.  With that feeling, I get reflux and burning, sometimes vomiting.  I get bloated, which causes discomfort and pain in my stomach.  Your stomach retrains itself to accommodate its food.  Of late, I haven't been vomiting as much because it just got so used to having so much food in my stomach...which isn't good.  I was at risk for aspirating the food into my lungs and even bigger problems.

If the food ever moved out of my stomach, that was really where the intense pain began.  Since I have had 2 reconstructive surgeries of my stomach already, I have an extra exit hole in my stomach that was made to alleviate the pain from my God-made hole.  Now, I have not one, but two blocked exits.  When the stomach is trying to do its job and push food out the door (peristalsis for the medically inclined), it pushes and pushes and hurts and hurts as the food just can't all squeeze through the tiny space that is there, which equals lots of pain.  Then, it gets worse when you drink liquids on top of that.  The weight of the liquids push harder on the food that can't move through and that begins the sleepless nights.  There's no chance for lying down and even if sitting up, there's little chance for sleep with the chronic pain and discomfort.  Many, MANY times I have dozed off in the bathtub at 2am, as the buoyancy of the water allows some relief in the pain.  When my body gets over-tired, my stomach starts to hurt as well.  So, then I am exhausted, wanting to sleep, but can't and the vicious cycle continues.

From my stomach thru my small intestine there are multiple strictured areas throughout.  Every time food tries to pass one of those strictures it causes a great amount of pain, just as it does when it exits the stomach.  When the food gets stopped and doesn't pass, it causes a lot of gas to build up and it gets trapped...absolutely excruciating.  That was actually one indication to me that I needed to go to the hospital when I did.  I could feel the gas bubbles, I could see the bloating and I couldn't burp.  I knew that meant my stomach was swollen shut and there was no release.  Pain, oh the pain.

On top of the strictures I have multiple ulcers.  To see them in the pictures, they are like little scabs in my stomach and small intestine...and the source of my blood loss over the past 2 years.  I can't be certain, but in the last two years I have had to get 4-6 pints of blood, multiple iron infusions, and more recently weekly B-12 shots.  All because those little sores are "weeping"...like a scab that won't heal.  And in that weeping, I am losing blood, which caused my blood levels to actually plummet to dangerously low levels.  (Another story, but we discovered that when the very different and unexplained pain in my abdomen was so excruciating I took myself to the ER down the street at 3am and literally collapsed at the front desk.  They scooped me up, took one look at my blood tests and loaded me in an ambulance to admit me to the hospital for a blood transfusion.)

If you have an ulcer, you know the pain that can cause.  An ulcer alone causes indigestion, nausea, burning, and bloating to name a few.  Food hurts it, not having food hurts it.  An ulcer is never happy.  To have multiple ulcers only increases that pain and I firmly believe the gas in my stomach only intensifies the pain of an ulcer.  It's like your stomach is a balloon with a scab on it and when you blow the balloon bigger it just stretches that sore and breaks the scab, causes it to bleed and hurts like the dickens.

I just hate reading back over this and divulging all the pain I endure, but there are so many different kinds of pain.  I think it even helps for my husband to see the differentiation.  It's not like it's just a tummy ache.  "No, honey, it's not pain #34, it's pain #52."  I struggle SO MUCH with being patient while I am in the midst of the pain.  My husband desperately wants to help and understand, but when I am in a moment, it's very hard to make it a teaching moment for him.  In that moment, I am usually just trying not to pass out and breathe in and out, in and out.  Over the past month, all that pain has come all at once, at such great intensity, that my sanity started to slip.  I couldn't think straight, I couldn't find my words, I couldn't function.  Chronic pain will change you.  It has changed me.  

For the first time in my life, I understand first hand the glorious promises of being renewed in Heaven.  I dream of my earthly body being made perfect and without pain.  I know the deepest desires to be pain free and to be whole again.  It's a concept I always knew and could regurgitate (no pun intended :)) , but now I FEEL it and I know it with intimacy.

Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. I Corinthians 15:43

It has now been a month since this all began.  I think it was October 2nd that I went to the ER that began this journey.  I have received so many messages about friends and family members who struggle with various GI illnesses.  I hate it for every single one of them and it breaks my heart that GI issues are becoming the norm instead of the exception.  I started this little blog to support anyone going through any sort of illness, especially GI-related disease.  However, maybe this little post will help those people that LOVE someone who is going through anything of the sort.  I know how hard it is for my husband to see me in pain.  I know he wants to fix me instantly and he can't.  I know it is incredibly frustrating for us both.  I hope he never EVER fully understands what I am going through because I wouldn't wish it on anyone.

That said, because of who I am in Christ I know that God will use every ounce of this for His purposes, and for His will.  I know that suffering does not come from the Lord, but He will turn my lemons into some tasty lemonade!

And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose. Romans 8:28

And I do love lemonade...

My Sentiments

I know I have mentioned it more than once, but John and I are just stupefied by the amazing amounts of kindness shown toward our family in the past month.  For me, it is so so easy to give.  I love to take care of people in need, make a meal, grab the kids, do the laundry. I am a task master and there are tasks, I am happy to help get the job done.  I know from being the type that likes to do those things that it is something I LIKE to do and its EASY for me to do.  I think nothing of it, when I am doing the giving.  Now...switch the tables and be on the receiving end and its SO hard to see SO many people do SO many things for all of us.  It seems like so much and so much sacrifice on our friends' part.  I have to keep reminding myself that these are our friends and they want to help us in the same way I would want to help them.  A daily reminder to just be still and say, "Thank you."  Why is that SO hard?

A friend emailed me today and asked how I was doing and I feel like I finally {sort of} got into words the way I feel.  Not only do I have a hard time "receiving", but I have had to work hard over the last couple years to let my family and definitely my friends in on my pain.  I don't want them to worry, even though its gotten to be so obvious when I am in pain.  It has been comical at times when I am in a ball writhing on the floor with John panicking asking what's wrong and I am grunting, "Nothing, Babe.  I am just fine."  He doesn't take to that so well :)

So here was my answer to my friend.  The power of prayer has always brought me to tears.  To be the direct receiver of prayer in moments of mind-boggling pain...(catatonic as my mom tells me) and to feel it lift is surreal. And then, only to discover a message from a friend (this happened more than once) that she just prayed for me... How do you put that into words?  How?

As for health...so-so.  I know I HAVE to be getting close to feeling better, as my drugs take 1-2 weeks to feel the positive effects.  Saturday will be one week.  I am getting better about admitting my pain (so hard for me to do) so I will admit that the last month has been excruciating.  However, there is no way to live thru that kind of pain and NOT search for the positive or the pain will literally eat you up.  Not only was the timing PERFECT that John was between jobs for 6 weeks while I have struggled for 5 of those weeks, but we have literally been "Living on a Prayer"  (I sing it daily in my head...lol!)  To discover moments that the pain was so great I couldn't see straight and then feel no pain....a friend would text and tell me she just prayed for me.  THAT is powerful.  To know that God was with me in that moment brings me to tears on a daily basis.  I can't tell you how many times I have cried in the last month over all the love and support we have received from so many people.  It's beyond humbling.  Bottom line...I may still be hurting, but it has to be temporary (it has to!) and we are covered in meals and prayers and support by so many.  We are lacking nothing in the way of amazing kindness and irreplaceable friends.

Truth.  Prayer is the  easiest gift. While it seems so intangible at times, for a girl working through SO much in the way of pain...its the most tangible gift I can receive!

Baby Steps

I did a lot yesterday in the way of activity.  If you heard what it was, it would sound pathetic, but so much coming off a month of little activity.  Babe had his last day home before his NEW job started today.  :) He took the big boys to school and then we both got to attend WHS' Fall Festival and costume parade.  He took me to church so I could have lunch with my precious Bible Study group.  It was so great to be out and be social!  However, those two events alone put me over the edge.  I needed sleep, but sleep didn't come before the big boys were home and we were hyped up for Halloween!  Babe took the boys around the neighborhood while I sat still and manned the porch and the candy.  It was such a beautiful night, kids everywhere, friends and neighbors stopping by.  I just sat in my rocking chair on the front porch and soaked it all in.  I am so grateful for our lives.  While tired, it was a wonderful night filled with kids, friends, and lots of fun.  God is good.

A dear friend brought us dinner last night...precious that she could accomplish a meal for both us and her family on Halloween!  And I ate it.  Real food, solid food...and I was prepared to pay the price of skipping my regular chicken broth.  By the time I crawled in bed, I was starting to hurt a little, but I typically start hurting when I am overtired.  So, I took a pain pill.  And I never woke up.  This might seem small, but this is HUGE step for me not to wake up by 3am in excrutiating pain.  That is typically the time any whole food from dinner has found its way to one of my strictures that seems to be unphased by the steroids.  While I did wake up by 4am, it was not from pain in the least.  It was simply from the fact that I am on steroids and I don't sleep much.  I tried to lay in bed and sleep, but by 5am, I was on the couch working.  While steroids are not my drug of choice because of the icky side effects, they certainly allow me to be alert and get things accomplished if I am not in pain.  I remember very well moving into this house.  It was the day Hurricane Ike hit, we had no furniture and no food, so the boys and I headed to Bartlesville where I went directly to the hospital.  I was admitted for several days and returned to Houston amped on steroids and KICKED bootie moving into the house.  If I didn't have medicinal help, I would still be unpacking boxes...

I digress.  So...baby steps accomplished.  I feel like I made a small step forward last night having eating solid food and have yet to take a pain pill today!  Woo hoo!  I am realistic enough to know that for every step forward there will probably be a step back, but any step forward is cause for celebration.  I know if I don't take any more pain pills today, I will have some trouble coming off of them for a day or so.  Oh, how I hate taking something that causes such a detox!  However...grateful for the pain relief they have certainly provided over the last month.  I might be admitted to psych unit if it weren't for them...

Do You See What I See?

Praises. Praises. Praises.  Little did I know yesterday morning, that I would be looking at my big box of drugs in less than 24 hours.  I was still in my jammies this morning when Babe brought in this big official box of cold-packed shots.  When I left the doctors office, they sent me home with a "talking pen" that showed me exactly how to give myself the shot.  All the steps and pictures truly are over-rated.  All they did was serve to make me more nervous.

I opened the box to find a big sharps container, 6 shots, lots of paperwork and directions.  In a matter of moments, it became a family affair.  I sat in my chair and gave myself the shots while Gambo handled the sharps and the trash and sweet JBS applied Angry Bird Bandaids to my injection sites:)  Babe watched from afar asking each time I shot myself if it hurt that time.  Thanks, Babe.  I know you try.

So.  I am all shot up.  Four shots today and two shots on day 15.  Then, I will take 1 shot every two weeks forever.  I look so forward to feeling better. I look so forward to getting off my current steroids and pain pills and I look so forward to being "normal" again.  If I can be normal.  I have an overwhelming sense of relief.  Whether it be the placebo effect of knowing I have the drug in my body at work or the hundreds of prayers that have gone up in my name.  I feel like I can breathe for the first time in a long time.

Babe was talking to me this morning about being ready for the old Penny to be back :(  It made me sad.  But I actually thought about it and I really don't know when the last time was that I can say I felt good.  It was certainly before I had WHS and most certainly before we moved to Houston.  Of course, there have been ups and downs, but far more downs in the last 5 years.  

Prepare for the new and improved Penny! :)  God is good.  ALL the time!

JAMES 1:2-4

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Saturday Delivery!

Praise the Lord for Saturday delivery!  While last night was a bit rough in the sleep and pain department, today's news made up for it!

These days I am operating through my pain, trying to be productive to keep myself from getting too discouraged, yet trying to rest and heal.   All the while in the process of buying another stationery business.  It's all so crazy, but believe it or not, so much fun.  It is a good distraction for me on the days that I can work through the pain.  This morning, I was beyond excited to have an appointment at the Apple Store to learn new tricks on my laptop.  It really is the little things :)  I have had my laptop for over a year  (Well, 2 if you count the one that I left on the top of my car) and have never taken any of the classes at the store.  I had so much fun learning sneaky short cuts this morning.  It felt good to get out, albeit with my handy driver, Babe.  From there, we had an appointment at the bank to switch over my bank accounts to an LLC and plan for the new business (that will close on November 7th).  It was a lot to ask from my body in one day, but the bank part had to be done.  And...I survived with a 2 hour nap to greet me at home.

Of course, when I am trying to accomplish anything at all, it all comes at once.  But I was thrilled.  While we were sitting down with the banker, I received the call from the specialty pharmacy that my orders were received and approved and that my medicine was going to be shipped today.  Halleluiah! They told me a Tuesday delivery was set.  While that didn't seem soon enough for me having been waiting for 3 weeks, I was at least excited that I had a date.  In the process of the conversation, they asked if I was part of the co-insurance assistance program.  While we are blessed to have any insurance at all, these shots are not inexpensive, even with insurance.  WITH insurance, they are $150 per shot.  Taking those twice a month for the rest of my life can add up to a pretty penny.  So, of course, I was interested in whatever co-insurance assistance program they mentioned.  After two hours in the bank with Babe and the banker, with multiple phone calls to and from the insurance on my part, I managed to not only get a Saturday delivery of my drugs...(ie TOMORROW!), that coinsurance program is allowing me to get my first $5000 worth of shots at $5 each!  I really couldn't believe it.  So, if it works out as they say, I will get my first 33 shots  ($5000 worth of shots) for $165.  I guess they know they have me for life.  It's not like Crohn's Disease goes away.  It's all about the marketing...

So, not counting the pain, today was a great day with great news.  I never thought I would be SO ready to inflict pain upon myself.  It's a great place to be having been SO uneasy and fearful of the drug after I left Mayo Clinic last year in August.  God has certainly brought me to this point and I am ready.  Thank you Lord, for the peace that I have received.  It can only be God-given knowing the tears I shed last year over this very drug.

I will receive 6 shots tomorrow, 4 of which I will take tomorrow and 2 in 2 weeks.  Then, I will be considered on the maintenance dose of one shot every two weeks.  I would love nothing more than to be weaning off the steroids, as I already contacted the nurse for that.  However, she said I have to be settled on the Humira and showing signs of improvement before they will even begin to consider stepping down off the steroids.  I will take what I can get.  Hooray for the shots.

Now...to pray for continued peace...the peace that passes all understanding.  I still need that peace to know that God will prevail and that I will be protected from all the nasty risks that go along with taking an immunosuppressant.  If I allow myself to go there, I still get really anxious.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  Philippians 4:6

I Need Scripture!

Today was a breaking point....again.  I have reached total frustration in this process and I am trying to keep a level head.  I went to the ER on October 2nd because I had had unrelenting pain for 4 days in a row.  Given my history, I am pretty good at handling pain, but I knew that things weren't getting any better at that point.

So...that means that on October 5th, I visited the surgeon in The Woodlands, who referred me to the surgeon in Houston on October 8th.  On October 8th, that surgeon admitted me to the hospital for testing and I spent 3 days there, being discharged at 9pm on October 10th.

It is now October 25th and NOTHING has changed.  I am surviving on chicken noodle soup, pain killers and steroids and I am WEARY!   Sometimes the pain pills work, sometimes they don't.  The steroids always make me snappy, and they are starting to make me puffy.  I sleep...maybe at night, maybe for a couple hours, but not much.  All this time, the papers and the red tape and all the approvals have been bouncing around between the doctors office, the insurance company and the home health agency that is supposed to deliver my first shot.  How difficult can this actually be?

Since Thursday, Babe and I have been "tracking" where the last step was and who is in line for the next action.  I have no idea how anything like this EVER gets accomplished unless you are relentless with your physician, your insurance and everyone else in between.  I cannot wait to get back in routine with my GI doctor here who knows me and takes great care of me.

So...to date, it has taken 20 days and I still don't have a resolution to my problems. I have a temporary fix (of which I am VERY grateful for), but it is time for temporary to be done with and the real deal to be here.  I had NO idea it would take this long...

I can do all things through Christ who strengthens me.  Phillipians 4:13  ALL THINGS!

Jesus is in My Heart!

But those who suffer he delivers in their suffering; he speaks to them in their affliction.  Job 36:15

I started having issues with my tummy, about 17 years ago, when I was a junior in college.  Since the beginning, I have not been the typical patient in a GI office waiting room.  I have had many sweet and endearing conversations with little old ladies and little old men who like to talk about their bowels.  I always felt the stares as I walked into the office knowing people were wondering, "Why is she here?"  Maybe I was paranoid, but my feelings have always been confirmed when I met a doctor or nurse for the first time.  "But you don't look sick!"  Since we are counting blessings, I think we are up to #6 or #7.  I have always counted it a huge blessing that while my insides are sick, that no one can tell by looking at me.  I do have many bad days, but if I am down, I am out and no one witnesses those bad days beyond my family.  If I am feeling OK, I am out and about and no one knows.  A beautiful thing, indeed!

When I had my appointment with the surgeon at UT Houston, the parade of residents and med students came into my room to see me.  They non-chalantly asked what was wrong.  When I got into the details of my surgical history, the fact that I hadn't eaten more than broth in two weeks and the extent of the pain I was in, the resident's jaw was open.  "But you look so....so put together," she said.  I guess I can say, I didn't arrive in my jammies and house shoes?  Not sure what a sick person is supposed to look like.  It was the first time in the entire 17 years of illness that my hackles kind of went up.  She had no ill-intent and was very nice.  I guess I had already been through so much I just didn't feel like proving I was sick.  Having a medical background, I am generally credited with being a very good source and knowledgeable as to what has gone on with me.  As soon as she heard my story and saw my insides, she grimaced and told me what a sick girl I was.  I already knew...

It was that day that I decided my reserved response to those comments will be, "Because I have Jesus in my heart."  By the shocking looks and the "oohs" and "aahhs" and the desire to share my case with the medical students every time I step foot in a hospital, I know I look better than I should.  I do know that, am so grateful for that and know that there is only one reason.  I am covered in prayer by leagues, and I mean leagues, of amazing friends.

I have been brought to tears so many times in the last couple weeks that my poor hubs never knows if its from pain, discouragement or joy...usually it's all three at once :)  Usually the pain makes me more catatonic, but the tears begin to rush every time someone does something nice for us.  I don't know of a better word than just humbling.  So very humbling to stand in awe of pure acts of kindness in an effort to help my crazy family operate smoothly while I am down.  A dear friend started a Care Calendar for us that has provided us with so much love and support and many delicious meals for my family!  In addition, she so preciously included a prayer calendar and sends out regular updates on my status.  Those status updates are forwarded to others, some I don't even know.  After the really long and bad day in the hospital, I finally was coherent enough to look at my messages in the evening where I found text after text and email after email from friends telling me they were saying a prayer for me.  When I got home from the hospital, cards from friends saying they were praying for me.  Prayers from people who are friends from childhood, college, old cities, new home...friends I may not have seen in years, but they are praying friends.  They are real friends and they are treasured friends that I will hold dear every day I am alive.  Every day something so sweet happens and every day I cry tears of joy and wonderment that these people care so much about us.

Yesterday, on our way to Houston to the GI appointment, I was attached to another forwarded email about my health to a group we are involved in explaining my situation and sharing the care calendar.  I tried reading it to Babe and I got all choked up.  And he, too, said how in awe he was of how amazing and wonderfully supportive our friends are and how blessed we are.  I told him how HARD it is for me to receive.  In that moment I realized I am a giver.  I want to do all these things for MY friends and people who need help.  I want to do the giving, but the receiving is so very hard, especially when it is just so much.

Multiple times in the past weeks I have received notes from my children's teachers telling me they are praying for me.  First and foremost, my children's public school teachers love the LORD!  Amen! :)  I can't begin to even touch the surface of all the prayers that are going up for us and we don't take them lightly.  They work, my friends.  We are a testament to the fact that we are living on prayer and oh, how prayer is sustaining us every day!

As I am starting to be able to write all the "Thank you's" for all the generosity, I have realized what an incredible position I am in.  By being ill, and being in the trenches, I have become so much more vulnerable, realizing I cannot do this on my own.  I do need my friends, I do need my family, I do need the prayer and that is what is getting me through this trying time.  I am so lucky to be in a position where I can verbally tell my friends how special they are to me, how much they mean to me, and how grateful....how VERY grateful I am to have such beautiful Jesus-loving friends in my life.

They are the reason I don't look sick.  Jesus is in my heart...and he hears their prayers for me!

Be joyful in hope, patient in affliction, faithful in prayer.  Romans 12:12

First Week

The first week home and out of the hospital wasn't good.  It was so discouraging to admit it, but ultimately, I was in the same place I was before I went into the ER 2 weeks ago.  When I left the hospital, the plan was to wait for my blood work to return and follow-up with the GI in a week to get my new medication started.  So, for a week, I was at home waiting.  And, in the mean time, struggling to keep my pain under control while dosing up on steroids to help temporarily relieve the chronic inflammation from my stomach through my small intestines.

Needless to say, we were very much looking forward to my GI appointment yesterday in Houston.  I anticipated receiving positive results from my blood work and getting my referral to Home Health so we can get this show on the road and get all this pain to disappear.

Babe and I left the house at noon to give us extra time to park.  My appointment was at 2pm, but they asked us to come by 1:30pm to fill out paperwork.  We were right on time.  And there we sat...and sat....and sat.  Let me be clear, between Babe and I, I am the patient one every time.  But, now, I am on Prednisone and it makes me irritable, short, and overstimulated.  I am well-aware. {Please take note so if I am snappy, you will forgive me:)}  We finally were taken back to our room, where we sat some more.  My GI, whom I think is a very good doctor, was in and out so fast, we felt pretty sure that this "Clinic" is not his forte.  (We had visions of Dr. House being forced into clinic duty.) He is a researcher, a very smart man and patient-care is not where his heart is.  He asked ME which drug I wanted to take, and what I wanted to do, but so much so that I felt like I had just treated myself...and I am no doctor.  And he was gone.  We waited and waited some more for the nurse to come in.  Evidently, I needed a few more vaccinations, so I received the first round of those.

I wanted to be weaning off my Prednisone, because I don't like the way it makes me feel.  The doctor, in his brief moments, said I could, but didn't tell me how.  When I asked the nurse, she said, "Are you sure you feel back to normal?"  Of course I didn't.  She told me NOT to come off the steroids.  As much as I want to, I agree with her, as the steroids are the only thing allowing me to eat any food at all.

As for getting on the Humira, she initiated my Home Health visit which she said could take up to a week...or TWO!  UGH!  They have to get it pre-certified with my insurance company (which will, of course change with Babe's new job in November) before they can call to make the appointment to send the nurse to my home.  

In our discussion with the nurse, Babe commented how busy they must be.  The nurse admitted that because they were so busy yesterday, that the doctors didn't know there were more patients around the corner...in additional rooms, despite being told.  Information, we really didn't want to know, that we had been sitting in that room while his other patients were being seen and we were forgotten.  When we walked out of the room, the entire office (which was huge) was shut down, not a soul in the waiting room, and the gates were already pulled so we were locked IN the office!  It was after 5pm....which translates to rush-hour traffic if you are headed ANYWHERE in the city of Houston.  We left our house at noon and returned home by 7pm for one fairly unproductive doctors appointment.

I feel better getting all that out.  So very frustrating, but still feel so grateful to at least be able to manage my pain and even have ONE option to help me feel better.  We are blessed.

Home

{Re-Posted from my Personal Blog}

It took a little bit longer than expected, but I made it home by 9pm on Thursday night.  I was exhausted just by the short ride back to The Woods, but beyond excited to be tucking my little toots into their beds once again.

Unfortunately, the pain that disappeared while at the hospital returned almost immediately.  Although my bed was like Heaven, I wasn't able to sleep and here I am at 3am on the couch tonight...Ugh. I e-mailed my doctor just now hoping to get an idea for what I can do.  I have an appointment with him next Wednesday, but cannot make it until then like this.  Amazingly enough, I was able to sleep almost all day. Not sure why. I hate taking too many drugs and am fearful, with my ulcers, that I don't have many options...

The quote I saw on Pinterest this week keeps repeating in my head:  "Until God opens another door, keep praising Him in the hallway."  And that is what I shall do. Thank you for all the prayers and encouragement.  We will beat this!

October 9th

{Re-posted from my Family Blog}

October 9th   is how it should read.  So sorry to those of you who think October 9th is special.  It was a rough day here.  I went downstairs thinking I would have a quick 30 minute scope so the doctors could see what they were working with.  As it turned out, I went out right before 11am and woke up at 4pm vomiting blood.  (Sorry!)  It was a scary moment for me, as I was woozy, but knew I had been out for much longer than anticipated and I have never thrown up blood before.  They put me completely under via intubation tube because they needed to put a large tube inside of tube down my throat...a total of 3 tubes with the intubation.  They anticipated the need to remove the food that was stuck in my stomach and needed to do that without my aspirating into my lungs.  Thus, the tube inside of a tube.  They said that took a majority of their time.  They were also trying to place an NG tube below my stomach for nutrition, but every time they attempted to remove the scope, it removed the NG tube, thus "traumatizing" as they so perfectly described my throat and nose...causing part of the bleeding.  They also dilated 3 different parts of my stomach and small intestine that appeared to be restricted/ completely occluded.  That is a temporary fix until the steroids kick in.  And the steroids are a temporary fix until I start my meds next week. I woke up in an incredible amount of pain...in my hips.  I was in a bad position for 5 hours and am still limping today.  No one seems to care about that part...

We concluded that it was time to take the drugs...the drugs that I originally had a great amount of fear for.  I still have fear of the side effects, but there is as much or greater risk in surgery and removing more parts of my stomach and still not solving the problem.  I am BEYOND thrilled to not be having surgery.  I am still fragile, still on paid meds and will be on steroids until I start my new, lifetime Crohn's medication.  But, I get to go home and snuggle with my 4 boys.

I have been covered in prayer from the beginning of this and never thought that God's answer would be NO surgery.  To have full abdominal surgery (which I have had twice before) is miserable to say the least, especially when your body is so sick.  The recovery is long and very painful and still brings me to tears at the thought of going through that again AND with kids and a husband.  I am still a bit in awe that I  won't miss the things I was disappointed to miss, but also well-aware that I still need to stay on the down low until I get all my drugs working and hopefully back to optimum health.

Again, in AWE of God's ability to take care of me...one single child of God.  And certainly stand before all of my friends in the greatest of appreciation for all you have done for Babe and my kids and for every sweet message and prayer that you said for me.  I could say it a million times, but even the smallest of words is SO encouraging when you are in the trenches and I have saved every one of them!

SO....I am going home today!  It seems a bit to believe, as I am still getting TPN and I still have a central line to remove, but they said I can go home...carefully.  The care I have received here has been stellar.  From the kindness of the nurses to the attentiveness of the doctors...all the doctors, residents, and med students involved in my care.  Even the wonderful surgeon who ultimately worked himself out of a job.  I am SO grateful for his desire to exhaust all possibilities.

First stop...a SHOWER!!

Thank You!!

{Re-posted from my Family Blog}

So...I am in the hospital.  The history is HERE.  I went to the ER last Tuesday morning having been in pain for 4 straight days, unable to sleep.  I couldn't take it anymore.  From there, I was released to the care of my GI, who referred me to a surgeon in The Woodlands, who referred me to a gastric surgeon in Houston, who admitted me to the hospital for testing this morning.

I haven't eaten food since last Monday night.  I wasn't all that hungry this week and thus not thirsty, which has put me in a dehydrated predicament.  I have a new GI who has ordered a scope tomorrow morning and we will make some tough decisions from there.

When I am in the hospital, I am worrying about home.  I am wondering if JBS is reading his 20 minutes and remembering to write it in his log.  I am wondering if JLS will remember to put his library book in his backpack and if Babe is putting enough fruit in their lunch boxes for tomorrows lunch.  The reason mother's are often considered control freaks is because we CONTROL everything.  Probably not by choice, but by the nature of the job of being a mom!  I anticipated having to stay today and I took care of everyone except myself, who needed to pack a bag to spend the night in the hospital.  I made lists of who does what  and when and discovered HOW MANY things we do in a day are NOT things that are written on the calendar.  Taking medicine, book logs, library books, required computer work, flash cards, and the list goes on.

So...I do worry more about home than I do about me.  It's my nature.  I am so incredibly grateful for my mom who swooped in to take care of us and for Babe, who is off work for the rest of the month.  What a God send!  I have been brought to tears at least a dozen times this week, not about my possible surgery, but about the love and support and kind words that have all come our way.  The words...they mean SO much more to the receiver than I think the givers ever realize.  Support is so AMAZING when you are in the trenches.  And, for me, when I am in the trenches, I unfortunately bring my family thru the trenches with me.

Babe, Mom and the boys came to visit me tonight at the hospital.  I don't have any unsightly tubes yet and I am still coherent so we thought it was a good opportunity for the boys to see that I am OK.  When they returned home, I got an excited call from JBS and I could hear JLS in the background saying, "Cool!"  Why?  Because my amazing neighbors left the sweetest bag of treats for the boys on our porch.  I know it was nothing to them, but HUGE to me.  The boys are SO excited to have a nice surprise on our porch all for them.  It is great to know their minds are not on me and on that bag of snacks...from Trader Joe's no less!  Thank you SO MUCH sweet neighbors.  You know who you are!

Of course, it doesn't take much to get their mind of Mommy in the hospital when food is involved...

Surgery

Ugh.  The last few months have been a challenge for me health-wise, but the last 5 days, it all came to a head.  I haven't slept since Thursday night, as the pain in my stomach has been so great.  I can't lay down, and if I have any chance of catching a wink, I am sitting up to sleep.  It's a bummer.

I have had a known Crohn's ulcer in my stomach for five years that continues to get worse.  In fact, when I went to Mayo Clinic last year, I was told that I had the most severe form of Crohns because it IS in my stomach.  I can't remove my stomach...My disease is all proximal which means my colon is beautifully healthy. (Blessing #1)  My problems arise when I eat because if my stomach is swollen shut, my food can't go down.  It is excrutiatingly painful and so frustrating to have to worry about my health and be a mom and wife and business owner...all three are my favorite things to be!

Yesterday morning, I finally couldn't take the pain anymore and took myself to the ER.  We are so blessed that in this time, my husband is between jobs and is home for four more weeks before his new job starts.  (Blessing #2) Thru tests, we discovered what I already knew...my stomach is completely obstructed and the ulcer I have is very ugly, large, and bleeding.  I count it as Blessing #3 that my ER doctor, whom I didn't know, turns out to have a daughter in my son's kindergarten class.  My neighbor is also and ER doctor at that hospital and called ahead to tell him about me  (hopefully good things :) and not that I am his looney neighbor).  Because of this relationship, he offered that I get to go home from the hospital if I felt comfortable and if I went straight to see my GI doctor.  Of course, I wanted to get the heck out of here and home to my family.  I did, indeed, go to my GI doctor and stated the obvious:  It is time for surgery.  I have put it off and put it off and I, too, albeit an awful time, am ready to get rid of the ulcer and give my weary stomach some relief.  It is the reason I have needed multiple blood transfusions, regular iron transfusions and probably my latest weekly B-12 shots.  It is also the source of an enormous amount of pain that often leaves me breathless and useless for hours at a time.  It sucks to tell you the truth.

All that said, I still firmly believe that God is in control and we works all things together for good.  The amount of people who have come to me to talk about their bowels are many and I know that I have grown immensely as I pray desperately for healing.  We all have hardships, we all struggle in many ways...this just happens to be my struggle and I choose to accept it and hopefully use it to help others and build my trust in the Lord.

My mom flew down yesterday the minute they knew I was taking myself to the hospital (Blessing #4).  I absolutely hate that my family and my husbands family put their lives on hold so often all because of me and my poor health.  I am so grateful to them, but hate so much being a burden to those around me. We have already had so many friends rally around us and support us with offers of dinners and help with the kids.  I cry as I type at how blessed I feel and how lucky I am to have such amazing friends who love us and want to help us.  (Blessing #5)  It is really beyond words...

I, unfortunately, have had to temporarily close my business, Tippie Toads, which makes me really sad. But I am hoping that my wonderful fans and customers will stick with me through these hard times and greet me on the other HEALTHIER side :)  So, I leave you with getting all my ducks in a row.  Making eternal lists for Babe (my hubs) so he can attempt to operate smoothly with 3 boys...homework,  library books due, allergy shots, carpool.  The list of all the unspoken things that moms do on a daily basis.

We have so much love and support and we are so grateful.  I will attempt to keep this blog posted on the road to healing and recovery!

Butter

Fresh Butter after squeezing it through the cheese cloth

I made 2 new friends this week :)  I actually made quite a few new friends this week heading up crafts at our church's VBS week.  However, these 2 special girls found me, by the grace of God, and we very quickly discovered that they, too, were both fighting GI disease.  It's no fun, but it's not often that I find 2 cute girls to sit around and talk about poop. :)  It made it so clear to me that this little blog is here for a reason, started from a stirring in my heart in the midst of a Beth Moore Bible Study, to share my story and hopefully help those fighting similar diseases.  They were full of questions that I was more than happy to share my experiences and everything I have learned in the last few years about diet and healing.  They prompted me to share some things on My Intestine-mony that I hadn't thought to share.

Today, it's B-U-T-T-E-R!  Yummo!  One major lesson I have learned in my healing process is to NEVER eat "Light" or "Sugar-free."  Nothing that is light or sugar-free is natural and it usually has bad additives, like fake sugars.  For me, fake sugars are worse than plain sugar.  My body revolts against them.  So, when it comes to butter you need to eat the REAL DEAL; not margarine, not butter that you can't believe, REAL BUTTER. Organic real butter, of course.  Real butter is made from milk that your body knows how to digest and it does a body good.

I heard someone once say that milk from the grocery store is basically Antibiotic & Hormone Soup.  Since then, I have not been able to stomach it for me or for my children.  I am fortunate enough to have my fabulous Yonder Way Farm that delivers fresh raw milk to me every two weeks.  I was nervous about it.  One day at pick up, I watched a man load 8 gallons of milk into his truck saying that the butter from the milk was the best butter he ever had.  Now THAT got me curious!  Now, it is a routine.  I order 2 gallons of raw milk from each delivery and use it to make homemade butter.

What you need:
1-2 gallons of raw milk
Mixer (unless you prefer to churn :))
cheese cloth
plastic wrap
Butter form (optional)

My grandmother's butter form

Making butter is NOT rocket science.  When you buy organic at the store, it is still great for you, but it only makes sense that there are preservatives in it....it has to have a shelf life!  Making it at home, is like making dessert and its a breeze.  As soon as I get home with my two gallons of milk, I pour them into 2 big bowls.  I let the cream rise for 24-48 hours.  The longer the better.  Then, with a measuring cup, I carefully scoop the cream off the top of the milk in the two bowls.  Get as much as you can, but if you get a little milk, it won't be bad.  It will eventually separate out.

At that point, I put the cream in my mixer on medium-high and mix it!  Add nothing at all....it takes anywhere from 20-30 minutes.  While it mixes, I use my funnel and poor the milk back in the saved jugs (that remained in the fridge so they didn't sour) and I freeze a gallon.  YES!  You can freeze milk until you need it.

The cream will thicken up to whipped cream...PLEASE take bite.  It is a piece of Heaven!  Then, the yellow in the butter will start to come out and the milk will start to separate and it will get sloshy if there's too much milk.  When it appears that the butter is stuck to the beaters for the most part and the milk is in the bottom of the bowl, it's time to stop.  Pour the milk out and drop the butter onto a piece of cheese cloth.  Squeeze the cheese cloth enough to squeeze out the extra milk, but not so much to squeeze the butter through.

At this point, I wrap the ball of butter in plastic wrap and put it in my butter form. (It was my grandmothers.)  Then I gently push the butter with the form and make a stick of butter that has no additives and is LOADED with probiotics!  Not to mention, it tastes out of this world!

Inside the form...

The finished product!

This butter is heavenly and if I choose to "cheat" a little, I smear it on my very favorite, Vinta crackers.  My eyes roll to the back of my head and I dream a little...for just a moment.  There is no butter that tastes as good as homemade butter...and it couldn't be easier!

I Survived

Last week, I started having more intense pain again in my stomach...ulcer kind of pain.  On top of that, I felt that it might be bleeding again.  UGH!  I was so frustrated, yet so determined to nip this cycle in the bud.

The fantastic thing about having a hematologist, if there is an up side, is that the lab in the office is open anytime and patients arrive with or without appointments.  So, I high-tailed it to the office, where the nurses are so kind and had my blood taken.  My mother-in-law was in town {she has the good blood} and I was fully prepared to have to ask her, yet again, to donate for me.  I hate it.  I hate that both my husband and my mother-in-law tell me that they don't donate because they never know when I will need their blood.  I am so grateful to have matches so close to me, but isn't there someone out there that might need it more than me?

I anxiously awaited their call on Thursday to tell me that my iron was low and I needed a transfusion.  I dreaded it.  I partially willed the call not to come.  I am just SO tired of being stuck and poked.  Again, SO grateful that I can get better because of the sticks and pokes, but just so tired of taking time away from my kids to have to go to the hospital.  I am still praying for that miraculous healing.  I WANT to be that crazy on the corner yelling, "I've been healed!"  :)

The call came.  However, it wasn't my iron that was low, but my B-12.  In the history of my fight with Crohn's I have never had low B-12.  That is a very common symptom of Crohn's Disease and have been asked about my B-12 by every new doctor I see.  But, I have never had a deficiency...until now.  The great nurses told me they would call it in...as if I knew what I was doing.  I  haphazardly asked if they were shots.  Why yes!  The syringes and vials will come together she said.  I interrupted before she ever finished.  "You mean I have to give it to myself?  Or do I come to you?"  She explained that she could do it, but they would have to charge me.  And that I would need to get this shot every week for quite some time.  I have endured lots of things, shots even.  But giving myself a shot is a whole new ballgame for me.  It was around 4pm on Friday and she said I had to have it today.  So, I raced to Walgreens to pick up my shots and raced straight to the open arms of my hematology nurses.  She went slow, but changed the needle (because hers were smaller), and did this and that and squeezed my tummy and it didn't even hurt.  I thought I could possibly handle it myself the next week.

So, here I am!  The next week arrived, I laid everything out in front of me and prayed that I wouldn't kill myself by pushing air bubbles into a vein.  Hard to do in a pooch on your tummy, but still!  My hubs was sitting next to me practically looking the other way saying, "Do you want me to do it?"  I said, "Yes" and he never moved and inch.  So, I "primed" (new lingo) my needle and pinched my tummy and pushed it in.  I felt it.  BUT, it wasn't so bad.

So far, I am still alive.  That speaks volumes to me!  And, my husband still hasn't moved from his position on the couch.  He does feel good in his heart, though, that he really did OFFER to help....whether he meant it or not.

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!