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!