Thy Will Be Done: Walking by Faith With Chronic Illness

You can call it coincidence, good timing, divine intervention, or God’s will but there are moments in time where in the midst of chaos, rambling around, or just goofing off that the universe hands you exactly what you’ve needed to hear on a platter. I had one such moment this week. It was late and I was poking around on Spotify looking for new songs to add to my playlist and I came across a song called “Thy Will Be Done” by Hillary Scott and The Scott Family.

For one, I had no idea that Hillary Scott (most known for being a part of the country group Lady Antebellum) had a worship album and second, would have probably never found the album on my own.

By the time the song was over, I was in tears. I take that back. Not tears. Sobbing. It would not describe the prayer of my heart more if I had written it myself. Actually, it described it better than I could have ever written. It could be the perfect anthem for trying to standing strong in your faith with chronic illness. It just spills out of my heart.

I’m so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don’t wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I’ve got is hurt and these four words

Thy will be done
Thy will be done
Thy will be done

I was a junior in college when I felt the call to ministry and I answered. However, when I answered this call, I thought it came with a plan. After graduating undergrad, I immediately started seminary where I studied Pastoral Care and Counseling. I absolutely loved it. My health was continuing to decline but as I was working in the hospital during my chaplaincy internship, I finally felt like my pain had a purpose. I was able to connect to patients in a way that I knew that many chaplains were not. My spirit felt so alive. I graduated seminary in 2010. In 2012, I had to quit working and started the disability process. I was finally approved in 2015 and now, here I am preparing to beg my doctor for surgery at my next appointment. How did I get here? How was this a part of the plan?

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not

Lately, I have found it so very hard to stay positive hence why I had to take a little break recently. I love this verse because it is such a powerful reminder that God is so much bigger than my tiny mind can even begin to comprehend and the noise can be so distracting. It is in moments like these that I know that God is good and even when I cannot see what His plan is here in this very moment, I can trust in His character and because He is good, I can find peace and respite in that.

I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store

I will be the first to admit that there have been moments where I’ve been singing this in my truck and almost had to pull over because I’ve been so moved by these lyrics. Yes, I am that weirdo on the side of the road singing at the top of her lungs with her hands raised in her truck but I can’t help it. Even in the deepest depths of my pain, I can find such comfort just knowing that God has a plan for me and that plan involves things that are good and full of hope. And hope is like the wind. You can’t see it but you can feel it.

Jeremiah 29:11 "For I Know The Plans I Have For You"

I am so glad I happened to be up browsing Spotify that night so I could find this song. It has truly changed my heart and has helped me regain some perspective on my current situation. Though it doesn’t feel good right now, God is good and He has good in store for me and it is from there that I can draw my strength. I have put together a playlist called Strength For The Journey that you can check out if you are on Spotify and hopefully these songs can offer you some strength and encouragement as well!

What is a song that has been keeping you going?

P.S. If you are on Spotify, leave me a link so I can follow you!

chronic illness

Stalemate: When Life With Chronic Illness Gets Put On Hold

Stalemate: When Life With Chronic Illness Gets Put On Hold

There comes a point in your life with chronic illness where you feel like you are going no where. There are opinions. LOTS of opinions but no where to go. No way to move forward. I’m not a huge chess player but I can’t help but think of this point in my life as a stalemate.

Definion of Stalemate (per Merriam Webster):

: a contest, dispute, competition, etc., in which neither side can gain an advantage or win

: a situation in chess in which a player cannot successfully move any of the pieces and neither player can win

This is honestly where I feel like I am in my life. I have a team of doctors (neurologist, rheumatologist, gynecologist, gastroenterologist, pain management specialist, and general surgeon) and at this point it feels like they are all just pointing fingers at who should be in charge of what. Honestly, it feels like they are just pointing fingers at whose fault it is. The one thing they all agree on is that I am in need of surgery but I am considered too high risk to go in preemptively so they just want to wait until something goes wrong (another total bowel obstruction is the most likely).

There is nothing worse than waiting.

I am currently waiting for our Disney vacation (123 days to go!) which is gut wrenching because I love Disney so much but at least I know at the end of 123 days, I will be on a plane headed south to visit The Mouse and have a week full of fun and family.

When you are waiting for something to go wrong, there is nothing exciting about that. My first total bowel obstruction experience was scary enough without knowing that it was coming and of course, the life changing experience I had in February, I never want to go through again. So right now, I have no idea what to expect.

We are at a stalemate. I feel like there is no win in this situation.

We have known for sometime that adhesions have been affecting my bowel but recently, I have been having a lot of issues with my bladder. The pain can take my breath away. I did see my PCP and I do not have a bladder infection or UTI so those are two causes crossed off this list. Two of concerns at the top of my list are bladder prolapse (which is common post-hysterectomy and I have a family history) or the adhesions have spread and now my bladder is involved. I’m not sure which one would be better.

I see my endo doctor June 8th and part of me wants to get on my knees and beg that she does surgery. Risks be darned but I need my life back. I know I will always have a life with chronic illness but there needs to also be a quality of life.



Am I absolutely crazy to beg for a surgery? I know the risks. There are a lot of them. I am not going to play that down. But at what point do the possible benefits from surgery outweigh the risks?

The last general surgery I saw said that the chances of anyone ever being able to do anything laparoscopically are slime because of scar tissue. She said that by just by feeling my scar from my vertical obstruction incision (which honestly feels like a rope) that any adhesions would likely be dense. When I have my gallbladder removed last summer, they could not even use my belly button for the laparoscope because it has been used too many times. My poor belly button.

Maybe we’ll get lucky. Miracles happen right?

All I know is that something has to give. Something has to change. We know there is a problem and I’m tired of feeling like a ticking time bomb. I’m tired of constantly being at a stalemate. Its time to make a move.

Have you ever felt like you were at a stalemate? Who made the first move?

chronic illness

Another Obstruction: Not Quite The Thanksgiving I’d Hoped For

Another Obstruction: Not Quite The Thanksgiving I Was Hoping For

We had been counting down the days to Thanksgiving. Not just because we were looking forward to the food, time with family, and the shopping (let’s be honest – I love a good deal). We were counting the days because ALL of this was going to be happening at the beach. Yes, the BEACH. With the fight for disability still ongoing at the time and the way my health seemed to tank even lower than we thought possible this past year, we were most definitely vacation-deprived and could not wait to get the heck out of dodge and spend some time away. The fact that this time away was occurring at a place where we could listen to the ocean waves and stick our toes in the sand (albeit cold sand) made it even better.

My parents drove down to our place and then we were all going to drive east together for a week of family and relaxation at their beach condo. I hadn’t been feeling hot but that wasn’t anything new so we worked hard to get everything packed on Sunday night and the plan was to pick Abby up after lunch at school that Monday and to head towards the coast.

Unfortunately, my “normal” kicked up to a higher level of sick that Sunday night. Since I was up sick, John went to sleep with Abby since my parents were in the guest room (that way I can have lights and the TV on as a distraction and he could still get some sleep).  I continued to get worse through the night and my mom ended up getting up to be with me (mother’s love right there – I’m 34 but I still need my mama). It eventually got to a high level that was way too familiar and I knew I was in trouble.

Coffee grounds.

If you have ever had a bowel obstruction, then you will know exactly what I mean.

Instead of heading to the beach at lunchtime on Monday, I was headed to the ER. Thank God He knew where I was headed and He put an amazing team in place when I got there. The nurse landed the IV first try so they were able to get fluids and meds started right away.

My trip to radiology confirmed my fear and what my gut was literally telling me: another small bowel obstruction.

Thankfully, because I knew the signs and know my body, we caught it in the early stages. When they were working on getting me admitted, one of the hospitalists wanted to start a NG tube and even after I shared my previous NG tube nightmare experience, she was adamant that the tube be put in and the fact that I was “scared” shouldn’t be a factor. Fear wasn’t the issue. It was way more than being “scared.” The issue was that there was something anatomically wrong inside me that made inserting a NG tube a problem so I asked to speak with another hospitalist. When I explained the situation to her, she looked at my scans and backed me. She said that forcing the issue and going in blind could cause some major damage so she wanted to hold off to see what the next day’s scans said and if things were getting worse, then she would call in a surgeon.

I felt so strong not only standing up for myself to make sure that I was heard but for also being my own advocate and knowing my body and my medical history well enough to take on a hospitalist that didn’t know my history. I was wearing my “Be A Badass Everyday” awareness bracelet from FJJCreations and I totally felt like I earned my badass status for the day.


Thankfully, since we were able to catch it so quickly, we were able to clear the obstruction and jumpstart the illeus (a section of bowel that becomes paralyzed) with NPO and meds within three days. I had a couple bouts of really low blood sugar that required quick intervention which were not fun at all so I definitely caught a glimpse of what its like for John to live everyday with diabetes and its not fun. The first time I went from 44 to 248 in under 5 minutes and it was the most miserable feeling ever. Thankfully, they were a bit more careful the next time around.

The bad news is that this obstruction occurred up high near the sight of where my gallbladder was removed meaning adhesions have already started working their way up. My previous obstruction have been lower in the abdomen where the small and large bowel connect. This one was located closer to the junction of the stomach and small bowel (basically, exactly where my gallbladder was located). My adhesions are spreading rapidly considering that surgery was less than four months ago which increases the chances of another bowel obstruction occurring due to adhesions.

The good news is that the doctor that took over my care once I was admitted put me on a new medication (called Relistor) that blocks opioid receptors in the gut that would allow me to keep taking the pain medication I need without having such a dramatic impact on the function of my bowels. It means giving myself a shot in the stomach every day from now until who knows when but it keeps my bowels moving which in turn can lower the chance of a bowel obstruction occurring due to an illeus and has allowed me to actually eat a solid meal every once in a while.

The first shot at home was a little scary since they didn’t give me any kind of training in the hospital (thankfully I’m married to a diabetic so he showed me the ropes) but I can now give myself a shot without wanting to hyperventilate. Another badass point for me!

So while we didn’t get to spend Thanksgiving at the beach like we had planned, I am thankful that I got out of the hospital just in time to enjoy Thanksgiving day at home with my family and thanks to the new medication, I was actually able to enjoy Thanksgiving dinner! Hallelujah!

Point of the story: Living with chronic illness means living boldly and sometimes living boldly means advocating and standing up for yourself even against doctors when the time calls for it. You know your body better than anyone. Trust yourself.

[bctt tweet=”Living with chronic illness means living boldly which can mean standing up for yourself even against doctors.”]

And be thankful. Always.