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February, 2014

chronic illness

Meet Your Endo Sisters!

Can you believe that March is only 3 days away which means the THIRD annual Blogging for Endometriosis Awareness campaign is kicking off?! I can’t believe it! 3 years ago I would never have imagined the way that this dream of bringing bloggers together to help raise endometriosis awareness would have come to fruition and we would be embarking on our third campaign!

This year is going to be even bigger with a goal to put our feet on the ground and make a tangible effort to increase awareness, education, and research by fundraising for the Endometriosis Research Center. Our Blogging for Endometriosis campaign goal is $250 but I know we can blow that out of the water! If you didn’t see on twitter or Facebook yesterday, next month I am scheduled for an endometriosis-specific ultrasound next month which is brand new technology that allows endometriosis and adhesions to be viewed via ultrasound! This has never been possible before and currently is only offered in 2 locations in the US! This is a HUGE step forward in the diagnosis and treatment of endometriosis! By continuing our efforts, we can help this technology be more readily available and continue to make steps forward in the advancement of endo research! Be sure to share our fundraising campaign link throughout the month as well as linking up your blog posts!

I thought that a great way to kickoff the campaign would be a fun little linkup answering some questions about ourselves (both about our endo histories and some fun/silly questions) to get to know our endo sisters a little better! You can answer these questions in a blog post anytime this week and add to the link up! If you don’t have a blog and still want to participate, you can answer the questions in the comment section!

Ten questions:

  1. How long I have been diagnosed with endo:
  2. Types of treatments I have tried to my journey with endo:
  3. My biggest frustration of living with endo:
  4. The biggest hidden blessing that has come with living with endo:
  5. If I had to pick a song that would be my “battle anthem” for living with endo, it would be:
  6. The food I could not live without:
  7. My favorite guilty pleasure:
  8. My favorite place to shop:
  9. My favorite drool-worthy actor: 
  10. If I could be doing anything today it would be:

My answers:

  1. 1. I have been diagnosed almost 11 years.
  2. 2. I have had 5 surgeries including a total hysterectomy, a 3 month course of Lupron, and every birth control on the market.
  3. 3. My biggest frustration is going through with the hysterectomy and still not having relief. Despite removing ovaries, the darn stuff keeps coming back!
  4. 4. The biggest hidden blessing of living with endo has been being able to meet so many amazing, inspiring, and strong women along the way.
  5. 5. This is a tough one even thought I’m the one who created the questions! I would have to say “Whispers In The Dark” by Skillet because it reminds me that I am never alone. God is with me and He puts people in my path to light the way and remind me that the best is yet to come.
  6. 6. Pizza. Oh my goodness pizza. If I could have one day where I didn’t have to worry about Celiac or being gluten-free, the first thing I would do would be to go to Pizza Hut and order a stuffed crust pizza with pepperoni, beef, and extra cheese. With breadsticks. I just drooled on my keyboard! Thankfully I have found some pretty decent gluten-free options to hold me over!
  7. 7. My most recent guilty pleasure would be watching makeup tutorials on YouTube! Its like crack! I have always loved makeup but totally lack the skills so I like to pretend I know what I’m doing with the tutorials!
  8. 8. I love shopping at Maurices but since I’ve been on disability and not working, I’ve been on more of an Old Navy (on clearance) budget 🙂
  9. 9. Is there even a doubt who my favorite it? Mark Harmon (aka Leroy Jethro Gibbs). Yes, I totally have a thing for older men which is funny since my husband is younger than I am!
  10. 10. If I could be anywhere today it would be Animal Kingdom (at WDW) riding the Expedition Everest as many times as possible without getting sick 🙂

 

Your turn!

chronic illnessfaith

Reclaiming Grace

2014 has been off to a rough start. It seems like it has been one thing after another and the resulting anxiety has been overwhelming. I have struggled with feeling empty physically, mentally, emotionally, and spiritually and with that comes guilt and shame.

I am a youth pastor’s wife who feels like a wall has been built between myself and God.

I have not lost my faith. I know wholeheartedly that God is in control and I cling to His promises fully. The proof of His love and provision is all around me.

During the trials that have surrounded me, I know that He is with me and He has never moved. I have. My tank has run empty and I have not let His grace fill me up.

If you deal with chronic illness, you know how exhausting it is on every level and in every part of your life. Actually I’m not sure the word exhaustion can even begins to describe it. It is a fatigue that seeps into your bones and into every corner of your spirit.

In efforts of self-preservation, I shut down. I yearn so badly to be filled but I feel so full of guilt and shame that I push it away. I should be stronger than this. I am not only married to a pastor but I have my own call to ministry and here I am swallowed up in a sea of desperation and feel like I’m treading water just to maintain.

I am exhausted.

And then today happened.

I received the results from my biopsy results from last week’s EGD. All of the biopsy results came back normal but one. My celiac disease is being controlled by my gluten-free diet and I have healed wonderfully since my diagnosis almost four years ago. It is what they found in my stomach that made me hold my breath.

When the nurse went over my doctors notes after my EGD last week, she mentioned that they had found and removed a gastric polyp but not to worry because they are common and turn out to be not that big of a deal.

But this one wasn’t.

The polyp that they removed is called an adenoma. Adenomas are the least common type of stomach polyp, but the most likely type to become stomach cancer (source).

I almost dropped the phone. The nurse assured me that they removed everything they needed to during the procedure, nothing was left behind, and I am 100% ok. I would just need to be closely monitored with EGDs to make sure that nothing comes back. I could breathe again.

As I sat on the bed trying to process everything, I went back to the day I sat in the doctors office last month scheduling the procedures. She had only planned on doing the colonoscopy but something inside me told me to push to have an EGD done at the same time. Since I do not test positive in blood work for Celiac, an EGD is the only way to monitor the disease so she agreed. If I was under and cleaned out, they might as well check both ends.

But what if I hadn’t asked for the EGD? What if this polyp not caught and removed early like it was? When would we have found it?

Those were scary questions to ask and I found myself face down on the floor.

At that moment there could have been no greater reminder of the sovereignty of God. He was the one that pushed me to ask for that EGD. He was the one that helped my doctor find the polyp early enough to be found and completely removed. He was the one waiting to rescue me.

In that moment I felt His grace and mercy poured down on me like rain. All this time He had been whispering, “I am here” and I finally pushed myself out of the way so I could hear it. I could feel the walls crumbing.

Today is the first step in healing. Today is the day I give my heart back. Today is the day I reclaim my place. At the foot of the cross.

In Need of Grace

Photo Credit: Jasmic via Compfight cc

chronic illness

Mission Aborted

 

When Routine Procedures Go Wrong

Yesterday I arrived bright and early at the hospital in Charlotte for my colonoscopy and EGD. Having dealt with chronic GI issues over the last several years, this was going to be my third colonoscopy and fifth EGD. I have Celiac disease but do not test positive on the blood work so I have to have a regular EGDs to monitor but I don’t mind them because there is virtually no prep (just no eating or drinking) and with sedation, its quick and painless.

Colonoscopies on the other hand are torture.

The procedure itself isn’t the torture. Honestly once I get the IV without a nurse killing me, I’m golden. Its just the preparation that gives me anxiety.

Yesterday I shared my updated bowel prep survival kit and since I had to be at the hospital so early (and driving an hour after drinking the morning dose of prep juice would be hell), we checked into a hotel near the hospital with my survival kit in hand. I usually try to get the prep as cold as possible as it seems to make it a little easier to get down but our room didn’t have a fridge (hotel fail) so I kept it in the ice bucket until time to drink. I had the idea to mix the prep with apple juice (versus drinking a glass of prep followed by a glass of apple juice) and it really did make the drink more tolerable. I may not drink apple juice for awhile but it was really helpful in keeping the gagging to a minimum.

As I’ve said before, yesterday was not my first time in the colonoscopy rodeo and sucky as the prep is, it has always done its job.

Until yesterday.

The day started off on a high note as I scored an amazing nurse who got my IV in on the first try with virtually no pain. I was actually taken back for the procedures 30 minutes EARLY (does that EVER happen?!) and the anesthesia team and nurses in the room were excellent.

The EGD portion went off without a hitch and then they started the colonoscopy and hit a wall. Quite literally actually. And I learned firsthand about one possible colonoscopy complication.

The bowel prep was ineffective in fully emptying by bowels and the colonoscopy had to be aborted. Even though I followed the directions precisely (and given the amount of time I spent in the bathroom it seemed to be doing its job), for some reason the prep was just not enough and they were unable to continue.

I woke up in recovery very nauseous and crying. Not an emotional crying, just major tears were flowing. My first memory after waking up to the nurse wiping my tears with a cold cloth and wanting to throw up. They were able to give me a little Zofran to make the trip home a little easier. My doctor had met with my husband after the procedure but the nurse had left the procedure notes and discharge papers on my bed when she left to call for transport.

As I was putting on my shoes, I glanced at the papers and read that the colonoscopy was aborted due to poor bowel prep. The tears returned. To spend 12 hours in misery for nothing was a hard blow. The notes also read that a repeat colonoscopy is recommended so not only did I go through the prep for nothing but now I learned that I would have to go through it again? Heck no.

When the nurse returned, she noticed my tears and tried to help by explaining his notes. Despite following the instructions precisely, it seems that my gut is moving so slowly that it just was not powerful enough to get a thorough cleanse. For a repeat I would likely be required to stay on a liquid diet for 3 days instead of 1 and need to drink a more powerful medication. Awesome

It definitely was not the news I expected. I had expected to hear that my gastroparesis was just as severe (if not worse) than the last time it was checked. His notes cited no motility was noted in my upper GI so I am not sure how much the paralysis extends beyond my stomach. I had one gastric polyp that was removed and biopsied as well as other parts of my upper GI to check how my Celiac is doing and to check for other problems. I had expected him to say something along the lines of needing to up the amount of Miralax I was taking because of slow motility but everything else looked normal and biopsies were only taken to rule out Ulcerative Colitis and Crohn’s as a precaution. I was not expected him to say he had to abort.

The biopsy results will be in within the next few days and his office will call with the results and to schedule what needs to be done to follow up. In the meantime, I am started a medication to help with the slow gut and constipation issues directly related to using narcotic medications to treat my pain. He knows the complexity of my endometriosis and adhesion issues which requires pain management so he wants to try his best to work around it to provide more comfort (and function) due to resulting GI issues. The medication will not help the gastroparesis but it should help get things moving and provide some relief.

Hopefully I should have more information by the beginning of next week. I have an appointment to see a new doctor at the Womens’ Center for Pelvic Health on February 24th so hopefully between this appointment and the biopsy results and follow-up information from my gastroenterologist, we will soon have a game plan!

For now I am watching the snow fall outside and am trying to recover from all of yesterday’s “excitement.” I forgot how brutal the gas pain can be!

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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