Monthly Archives: September 2014

1,387 Days and Counting…

Last week was exhausting.

Per my last blog post, the past 24 days have been spent making phone calls, setting up tests and appointments, etc. Last week, Chris traveled half of the week for work. On Monday, I began something called a Sitz marker study at Aurora St. Luke’s hospital. The test itself is painless and simple, but the lack of pain is compensated by the amount of time spent. Monday morning, before teaching, I went in and swallowed a capsule filled with 24 small white “O rings”. They look shockingly similar to those colorful rubber bands that you make rainbow loom bracelets with…only rainbow loom bracelets made with these rubber bands would be appropriately sized for a hamster. (If you have or are a 6 year old girl, you’ll know exactly what I’m talking about here…and if you’re a 6 year old girl who is reading my blog…I want to meet you).

After swallowing these, they take a series of X-rays for 7 consecutive days, in order to “track” their journey through my digestive system (Images of “The Magic School Bus” pop into my mind at this point). Again, other than having to spend about 2 hours total each day to have these done, it’s pretty painless. There was a little confusion on Monday about how many days and how often I needed to come (each doctor does it a little differently), so I ended up skipping Tuesday, which meant that I had 2 X-rays on Monday and then 1 X-ray Wed, Thurs, Fri, Sat, Sun, Mon. (I know this is beginning to sound like one of those elementary school word problems… I was confused, too).

Again, this would not have been a big deal except for the fact that my last bowel clean out (Senekot night) had been on Saturday, and I discovered upon arriving Monday for the test, that I was required to refrain from taking ANY sort of laxative until all 7 X-rays were complete. So, if you do the math, by my last X-ray on Monday, I had gone 9 days without going to the bathroom. And that was the worst part of the test, as you can try to imagine.

I have never been so excited to take my Senekot, as I was on the day of that final X-ray. I was so excited, in fact, that I swallowed them 3 at a time (a new record for me!;)) and then went home and slept, while waiting for the inevitable 6+ hours on the toilet to start. I was concerned about how it might go, because even after 5 days it is unpredictable, but people were praying and all things considered, it was one of my easiest clean outs that I’ve had recently.

The plan after having this test done, was for me to go back into the hospital  on October 3rd (next Friday) and have a series of other bowel tests done, after which Dr. Klas would have all the necessary information in order to make a decision and recommendation on how to proceed surgically.

So I was a little surprised when his surgical coordinator called my cell phone yesterday morning, while I was teaching my Fashion Drawing class, and left me a voicemail saying that she wanted to go over my test results with me. My initial thought was, “Oh shoot, I hope she isn’t going to say that everything actually looked pretty normal and so there is no need to do the other tests on Oct. 3rd”. I know this sounds contrary to what I should want her to say, but this last year has been filled with so many medical “dead ends” that this was my way of guarding myself from another disappointing blow.

When I called her back, however, she had the complete opposite to tell me. She said that Dr. Klas had asked her to call and give me a “heads up” that he was a little shocked at how “remarkably abnormal” my X-rays and the entire test was. She said that I swallowed 24 rings on Monday and typically, even for people with lazy colons, they would see those rings move at least a little within that 7 day time period. She said mine did not move at all. She said that Dr. Klas would be talking to me in more detail on Oct. 3rd (as he will be the one doing the tests), but that we should start to think about setting up an appointment for me to speak with one of their ostomy nurses about what life with a colostomy would be like. She said they’d be really helpful in navigating me through the different options, figuring out my unique placement of the opening, answering questions, etc.

She was so kind as she talked to me, and for one of the first times, I heard empathy in her voice. Usually medical conversations are so, well….sterile? But she spoke empathy and it was such a tremendous blessing to my soul. She told me how they have recently had two younger girls with similar, but not as severe, issues as me decide to have the colostomy placed. She said that they have both been amazed at how much relief it’s given them. She also expressed to me how challenging it must be for me, mentally, to “psych myself up” for my bowel clean out every week, especially based on what they saw on the X-rays. I wanted to reach through the phone and BEAR HUG her. YES! Finally, someone (medical) gets it!

Something in my subconscious must have heaved a huge sigh of relief, because I decided to take a nap for an hour before picking Promise up from Kindergarten, and when my phone alarm jolted me out of my sleep, I could tell that I had been in the deepest and hardest sleep that I have experienced since being doped up on Oxycodone following my spine surgery 2 1/2 years ago. As my friend Monique told me in a text, “Never. Underestimate. The. Power. Of. Being. Validated.” to which my friend Claudia (who is a mom of 3 very small boys) responded, ” and Never. Underestimate. The. Power. Of. A. Nap”. Wiser words have never been spoken:)

So I ask for you to continue to pray for wisdom for these doctors, Chris, and myself as we continue to navigate this complicated decision. And please give praise and thanksgiving to God for simple things like how Dr. Klas’ office has been so amazing at following up with me (unprompted by me….that’s HUGE!) and for these very clear test results.

For those of you who are still confused as to whether or not this is good news about the potential colostomy; the answer is a resounding “YES”. While it will/would be a lifestyle adjustment, I am not scared or nervous (at this point). My body is so worn out after spending approximately 1,387 days of my life trying to clean out my nerve damaged colon, which is approximately 8,322 hours of my life spent sitting on the toilet. (It’s amazing for how much I DON’T like math…that I end up using it to prove my points).

I want to close with Paul’s prayer for the Ephesians out of Ephesians 3: 20-21, which is my prayer for myself and for all of you;

“Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”

Peace,

Adri

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Endless Opportunities

“Every time you venture out in your life of faith, you will find something in your circumstances that, from a commonsense standpoint, will flatly contradict your faith. But common sense is not faith, and faith is not common sense. In fact, they are as different as the natural life and the spiritual. Can you trust Jesus Christ where your common sense cannot trust Him? Can you venture out with courage on the words of Jesus Christ, while the realities of your commonsense life continue to shout, ‘It’s a lie!’? …Every time my theology becomes clear to my own mind, I encounter something that contradicts it. As soon as I say, ‘I believe God shall supply all [my] need,’ the testing of my faith begins. When my strength runs dry and my vision is blinded, will I endure this trial of my faith victoriously or will I turn back in defeat?” – Oswald Chambers, My Utmost for His Highest.

In late July, I had the privilege to share how I find hope in my life, to a large group of women at Elmbrook Church, here in Brookfield, WI. I was invited by my friend, Elizabeth (the orchestra conductor, as we began to call her). I sat at a tall café table, next to three other women who had each wrestled with what it means to find hope in their own lives. When Elizabeth and I had first started talking about this event, what it could possibly look like, etc. she had said to me, “Adri, I want you to be the “O” in HOPE, because you have endless “O”pportunities to feel hopeless in your life…”

After a good laugh about this (yep….read it again…NOW do you see why it’s humorous and slightly depressing? Humor has always been my coping mechanism…) we decided that she would say, “…because you have endless opportunities to feel hopeful in your life”.

Much. Better.

She was correct, though. This statement is true in both of it’s forms. I have had to learn how to choose to be hopeful instead of hopeless. We all have to make this choice at some point, I was just forced to start making this decision earlier in life because of my health.

Another opportunity came a-knock’n on Wednesday, August 13th.

Promise was spending a fun “Mimi & Papa & Cousins, etc.” week in MI (this is good to know because it gave me time to CRY MY EYES OUT) and Chris was already working at St. Luke’s Medical, the hospital where I had my appointment scheduled with a colorectal surgeon that I had never seen before.

The day of the appointment, I went to bed at 3:30 am. I had been up all night doing my weekly bowel regimen that I’ve been doing for approximately 19 years. It hadn’t gone well. After swallowing my prescription laxative plus another 8 Senekot-S tablets the day before, I prepared myself for the unexpected. This particular night entailed 5 hours of sitting on the toilet….straight, about 2 loads of laundry (I’ll let you figure out why), nausea, and cold sweats. In other words, it was an average night. My appointment was at 3pm, so I was able to sleep from 3:30 am until about 11 am. It takes me some time to get up and going after these nights, especially when it flares up all of my Chiari symptoms.

I pulled into the cement parking structure at St. Luke’s, with hair still wet, willing myself to push aside the intense pressure in my head and burning at the base of my skull. This appointment was worth pushing it aside for. This appointment was it.  In June, Dr. Brown (my GI at Rush) had encouraged the recommendation that Dr. Ciricillo (NS in Sacramento) had made for me to pursue having an ACE surgery performed to alleviate straining and the ramifications that this caused with my Chiari. We also had decided that it was best to have it done locally (hence my appointment at St. Lukes). In my mind, this appointment was simply a formality. We’d shake hands, schedule surgery, and be on our merry way to a happier and healthier me.

I smiled as Chris walked toward me, dressed in his light blue scrubs, and we briskly walked down a long hall and into Dr. Klas’ office. That’s where my ideas of how the appointment should go and the reality of how the appointment was going to go, began moving in polar opposite directions. After giving the receptionist my name, they discovered that when I had scheduled the appointment back in July, whoever I had talked to had never actually entered me into their system. They had no idea I was coming, and seeing as this was my first appointment at this hospital, they had no records on me. Nada. Nein. Zippo. Now, this is problematic when my health history file is the thickness of about 20 phone books.

The office staff was extremely apologetic and accommodating, as they assured me that they would still get me in to see him that day. I tried to remain calm as I looked at their smiling faces and pushed the throbbing in my ahead aside as I gave them all of my information again.

My frustration and anxiety began to grow, though, as the receptionist said that she had never heard of an ACE surgery, when she asked me for my reason for being there. It only escalated when the attending nurse took me back into the clinic room and told me that she, too, had never heard of that surgery (in her 40 years of being a nurse). I tried to calm myself internally by telling myself that surely the surgeon I was about to see would have heard of it.

Dr. Klas walked in, an extremely friendly and confident personality with glasses and a firm handshake (all good things for a doctor to have). However, as I briefly unraveled the story of my life and why I desperately needed this surgery (in about 3 minutes) my heart began to sink to my toes. I gave way to the pounding pressure in my head and warm tears welled up in my eyes. I could see, by his puzzled expression on his face that this appointment was not going to end as I had planned.

He explained to me that while he had heard of the procedure, he did not consider a common or easy procedure. Yes, it was reversible, but it brought with it many complications. He said that he personally had only performed two of these surgeries on adults and did not think that this was the best option for me.

After that, I heard nothing. I was too busy trying to control the tears flowing down my cheeks. I had never cried in a doctor’s office before (surprisingly) and I knew that I must look like a complete fool. His demeanor softened a bit in the presence of my blubbering, as I managed to get out that, “this appointment was my only hope…”. He assured me that he would do some research, talk to some doctors, and get back to me and that we would figure this out. I nodded out of habit and numbly walked with my head down, back to the parking garage, got in my car, and sobbed.

This did not make any sense. How could we be at another dead end? Where would we go now? Back to looking at brain surgery? Back down to Rush to see if they could do the ACE surgery? Just keep enduring my current regimen that is equivalent to running a marathon each week? And then the temptation for hopelessness began to creep in. Hopelessness is much deeper than disappointment. Disappointment was a normal response at this point. But hopelessness, for me, is when I begin doubting God’s hand and guidance and even possibly his reality in my life because things DID NOT MAKE SENSE.

But then again…”Common sense is not faith, and faith is not common sense.”

Oh, how I needed to read those words the next morning, as I sat emotionally and mentally exhausted in the overstuffed chair by my bedroom window. I knew then, more than ever, I needed to lean in to God rather than away from God. I would choose to let him fill me with hope again, instead of remaining hopeless. And He has not disappointed me.

My friend Jan told me, after I called her while doing my ugly crying post-appointment, that she was going to pray that Dr. Klas would be bothered about me as a result of my tears and that he would not be able to sleep or get me off his mind and that he would follow up with me. I said, “Ok, thanks” fully believing in my heart that this was NOT possible because, as witnessed by my quadrillion previous experiences, DOCTORS DO NOT CALL ME BACK.

A week an a half later, on Friday morning, as I was sitting and playing Barbies with Promise in the play room, my cell phone rang and the voice on the other end said, “Hi Adriana, this is Dr. Klas. Do you have a minute to talk?”. In shock, I said yes, grateful that he’d get to hear my non-crying voice, and listened in amazement as he said, “You’ve been on my mind since we last met and I’ve talked to a few colleagues and done quite a bit of research on your behalf.”

BAM. God put the smack down on my unbelief.

We continued to talk for 15-20 minutes, I thanked him PROFUSELY for calling me back and following up, and I hung up with a truly thankful and encouraged heart.

All of this is about so much more than me. It’s about Him and only Him. It’s about Him working in other people’s hearts and allowing them to see his every day miracles. It’s about Him continuing to teach me that “faith must be tested, because it can only become your intimate possession through conflict”, as Oswald states further on in the devotional that I read.

Things are still extremely confusing when it comes to sorting out what to do medically. But my heart is peaceful. Basically, we were provided misleading information on the success of the ACE procedure in adults. The surgery is oftentimes (and with wonderful results) performed on children with SB, as they are not capable of swallowing laxatives or following a bowel regimen.  It would make sense that Dr. C (NS in Sacramento) had suggested this to me, as he deals primarily in Pediatrics.

However, after Dr. Klas consulted many medical journals and top surgeons, his conclusion was that this surgery would have been more of a headache than a benefit. It would NOT have eliminated straining as we were led to believe, and it most likely would have needed to be repeated at least yearly.

Dr. Klas said that he would like to bring me back in to repeat 2 bowel tests that I’ve already had done a few years ago, and then based on those results, he can guide us to the best surgical option (if that still is the best option). As of now, he thinks that the best option will be for me to have an in-office procedure done, where they insert a temporary colostomy bag that I am able to live with for a month (or however long we decide). At that point, I’ll be able to experience life with no straining, no laxatives, basically….s*** free 🙂 (I’m sorry….I had to…). Then, if my quality of life and Chiari symptoms improve, Chris and I would be able to discuss if we are ready to take the next step of moving to a permanent colostomy bag procedure. If not, we would be choosing to just keep dealing with the bowel regimen for as long as I am able to.

Please continue to pray for us as we navigate this decision. Continue to pray for strength for me, both physically and emotionally, as the list of appointments I need to make, insurance calls, etc. is beginning to get quite long (I’m due for all of my yearly bladder/kidney appointments and tests, too, on top of all of this). Pray that my Chiari would calm down again…it’s been really fierce this past week. Pray that I would have wisdom on how to proceed with my Chiari NS at Columbia St. Mary’s Hospital.  Pray that insurance would approve extended PT sessions so that I can continue with my manual cranial sacral massage therapy (the only thing, at this point, that seems to help my Chiari at all).

Oh! And I’ll end with a praise…I went to the dentist and my teeth look perfect! (phew…at least I can check that one off the list…gotta find the positives here…). 😉

“We have become partakers of Christ if we hold the beginning of our confidence steadfast to the end…” -Hebrews 3:14

-Adri


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