bloggingchronic illness

Making Some Changes & Life Updates With Chronic Illness

If you haven’t noticed, A New Kind of Normal is currently undergoing a minor facelift! I’m working on tweaking the design and layout so thank you in advance for your patience!

While chatting about the changes, I thought I would give you a few life updates with chronic illness. I didn’t plan to disappear after this year’s Blogging for Endometriosis campaign ended but life got a little crazy (even more than usual)! My health really tanked and we’ve had a couple of scares.

While we were on vacation, we went go-cart racing and on one of the family tracks, Abby and I got nailed hard. Thankfully it was on my side of the car so I took the brunt of the hit. It was not a normal bump and crash. We were hit so hard the suspension of the car broke and we were complete sitting ducks. In all, the attendant counted that we were hit by at least five different cars (it was the first one that did the most damage). Needless to say, my body wasn’t happy so I got checked out just to be sure but thankfully Abby wasn’t hurt at all, just shaken up. If the jerk had hit her side of the car, I might have ended up in jail.

On top of that,¬†a few weeks ago I discovered a lump in my right breast. With my family history and my own history of having an abnormal mammogram and having a total hysterectomy at 26, we didn’t want to take any chances so my doctor rushed a mammogram and ultrasound. Thankfully, we got some good news and it was only a cyst so the girls are A-OK! Praise the Lord!

Then, in addition, I have been having even more trouble with nausea, stomach pain, and not being able to keep food down. Gastroparesis has been an issue for some time now but after needing to remove several adenomas during last year’s EGD, my GI wanted to go back in to see what was going on so I had an EGD last Friday. The only thing about EGDs that make me nervous is getting the IV. There is no prep other than not eating or drinking after midnight so the process isn’t quite as anxiety-inducing as a colonoscopy but with my terrible veins, I hold my breath until that IV is in place and then I’m golden. I always warn the nurses and usually they laugh and say they hear it all the time but never have a problem until they go to stick me. Then they believe me. My nurse this time around was amazing. She had to search and search (and search!) for a vein but once she found the pitiful thing, she hit it first try. It wasn’t ideal and it hurt like nobody’s business but it got the job done. Thank God for vein numbing medications! The whole team was amazing, took great care of me, and the procedure went smoothly. They had to remove two more polyps (we won’t know if they are adenomas until the pathology comes back) and they did the routine biopsy to monitor my Celiac disease but the doctor did note that there was some liquid still retained in my stomach during the procedure so I am not sure what that means. I should be receiving my follow up information and biopsy results any time now so I will keep you updated!

Hopefully between the tests and visits with my doctors, we will be able to get a better handle on my health and things will fall back into place. I am ready to get back into a routine, not only with blogging but with life in general. I cannot believe that Abby’s last day of school is next week and I will no longer have a kindergartener! The year has flown by so fast but we are ready for some summer fun!

Thank you guys so much for sticking around and for all of your support! You have no idea how much it means and how it keeps me going!

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

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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!