As Long as I Never Go Through That Again

I closed the last blog post having finally gotten the mind frame of acceptance of my situation. 

Don't get me wrong, I still found the biliary drain and bag to be completely degrading. I hated how my body looked with a tube hanging out. I worried about the copious amounts of blood that came through to begin with, the crusting of bile around the tube on my skin, and the bile that was pouring out of my body into this none-too-subtle bag. I was just trying to convince myself that the next three weeks would be much easier, now that I could move without feeling like I was ripping my body open... when it happened. 

The tube, visibly longer after being pulled

My daughter accidentally grabbed the bag I was concealing the biliary bag in, from under the blanket I had draped around me. I looked at her in shock and tried not to panic. I told Hubs discreetly what had happened later. He agreed that I should call the I.R. department at the hospital. They said that as long as the drain was putting out bile, I was fine. I was cautious for two or three days, but did okay. 

Sunday arrived, and with it the cessation of fluids in my drain. :/ No bile. Oh, how I prayed and begged others to pray that it would keep working! I knew if it stopped that they'd have to adjust the tube. Hubs parents came to feed us and to be on hand in case we needed them. We had lunch, and then another massive attack came on. We called the surgeon on call this time and were told to get to the ER a.s.a.p., given the lack of drainage and the present attack. I was run through tests again, including another CT scan. If you've not had one of those with a tube painfully jabbed into an infected organ, I do not recommend it. 

It took hours to know what was going on. Night had fallen, and the grandparents took the girls off home with them. Then, the news I most feared in the entire world. The tube was only in at the very tip. I had to have a new drain place. 

I cried. 

No, that doesn't even describe it. 

Friends, my "girl in the E.R." persona is a woman who is polite and uses humor to ease personal discomfort. I do what I can to be pleasant and to make people laugh. When the attending physician told me that a new drain was to be placed, I was triggered into a vivid flashback of my first experience. The humor was gone. I flat-out broke. I emotionally shattered in that moment. I've been in pieces ever since.

I sobbed inconsolably. I could not be comforted for anything. I cried all over the room in the E.R. so loudly that the doctor sent the nurse in to offer a sedative. Tears trickled out of my eyes on the way up to my room. Of course, on this most personally devastating night, my transport nurse was a man of six-foot-six. I felt vulnerable and exposed as it was, but he had to notch up the height of the bed so he could push me without bending in half. 

Yup. I was not just feeling vulnerable, scared, and exposed: I was also at eye-level with all of the short people. Aaaand the hallways were full. It was a busy night. *sigh*

I got to my room and encountered the same lovely nurses who had taken care of me the last time I stayed a few days. Hubs ran home and brought me yarn. 

I crocheted snowflakes for my nurses, tearing up repeatedly while he slept on the long couch to my left. Whatever they gave me kept the sobs at bay, but my heart was troubled. That night made me realize that knowing what was going to happen and having to actively wait on it was worse than being suddenly thrust into the situation. 

My uncle had just two days prior gone in for a gallbladder removal, which nearly killed him because his gallbladder was also toxic. Knowing this threw a glaring light on the fact that my surgeon had been right to drain and treat me first. I tried desperately to be grateful. "You are alive. You are going to get well. This is hard, but it is the safest route. All things considered, this is the easy route. "

The morning came and with it a beautiful, tiny, thin, blonde nurse. She chatted with me a bit and then told someone in the hall that I had a great personality. I couldn't decide whether or not to be offended by that, as a woman of size. Hubs left to get his breakfast. While he was gone, my lovely nurse came back into the room and said, 

"They are coming to get you right now!"

There went the calm! I freaked all the way out, HARD. They were coming, and I was ALONE! No hubs to be my anchor, my rock, my advocate! A head full of trauma and fear and the knowledge that I. Will. Feel. Every. Bit. Of. This. Hell. I sobbed. I wailed. I begged to God. I flipped out to my family. I cried. I cajoled. I prayed. I sought for peace. 

Hours - yes, HOURS went by. They called up to say that I was going right away, and then left me sit for hours. My pain meds came and went. My anxiety meds wore off. My hubs returned. 

My pastor stopped by to tell me there was nothing I could do about it, so... 

I honestly couldn't wrap my mind around how that was supposed to bring me peace. I wasn't panicking bc I was afraid of what it would be like. I was panicking because I had already been through it and already KNEW what it was going to be like. I wasn't just fearing the future or not trusting God. I was having PTSD-like symptoms from a trauma that had already occurred! Thankfully, he did talk to and pray with us until I was in a better frame of mind.

My Daddy showed up, God love him, and then they finally came for me. I did 'okay' until I was in the operating room about to move to the table. 

They had let my hubs and dad into the O.R. with me. My husband advocated for me with the nurse to make sure I was good and out of it. He told her firmly that I had felt everything the first time, as I was awake for every moment of it. Her response?

"Oh, no you were not!" in a half-mocking tone.

My eyes locked with my dad's sweet, encouraging "you are going to be okay" face, and the tears sprang up. 

My mind whimpered silently back into his gaze, 

"I'm not going to be okay Dad. 

I'm already NOT okay."

I honestly do not want to relive this experience too much again, either. Suffice to say that my hubs and dad left the room, I got set up and they hit me with a LOAD of drugs. I again waited patiently for them to kick in. This time I talked the entire time so they could see and hear my level of consciousness. 

This surgeon - a different guy that before - tried to simply reposition my original drain. That did not work. It was too twisted. He said he'd have to place a new one (which I already knew, but I appreciate that he tried). While he was waiting for them to get the supplies he needed, I went into a horrendous gallbladder attack. It was so bad that I began to cry. 

The doctor and the nurses said, "We're not even touching you!" They thought I was just being crazy emotional or imagining fake surgical pain, or something. 

"I know!" I gasped, "I am having a gallbladder attack!" 

Again, the brute nurse who invalidated me before we ever started rudely spoke up, "How would you know?"

Oh, I'm sorry. Of course, your drugs were at such high amounts that my body should not feel them. Please, tell that to my aching body, will you? I have never felt more demeaned and belittled in my life. She made me feel punished for my body not responding to their meds the way it was supposed to. I have no control over how my body responds to these things. 

She continued to be rude to me as the operation went on. When the surgeon announced that he was finished, I verbally confirmed that. 

"You are done?" I asked, relieved.

"Yes, I am done." he answered.

"I love you for that!" I exclaimed, so grateful to be finished. 

Awake through the second procedure, and in so much pain.

Nurse Brute rolled me out to my waiting father and husband with a cheery, "She did just great! She was asleep the whole time!"

I was squinting at them, and shook my head no at my dad. 

"I was not. I've been awake this whole time. I felt everything." I said, trying still to be a voice for myself and stand up for myself as a patient who had felt her procedure, and NOT as some problem-causing mess.

"Oh, you said you loved him!" she quipped back. 

What. A. Horrible. Woman. 

Which is it, nurse? Was I asleep the whole time, or did you just admit that I was awake AND TALKING to you and to the doctor? Hmmm? 

I felt so invalidated, belittled, and unheard. I forced hubs to take a picture of me right then and there, to prove that I was still awake. 

(Continued in the next blog post)

Catching Up To 2016 & The Start of Everything Bad

I have been away from my blog a lot, I know. I keep feeling the need to write. I am just at a loss for words. I haven't been consistent in updates, but it would seem wrong to pack everything in all at once. I am not great at giving the nutshell version. This is probably going to be long... 

I realize that I never finished posting updates about how last year's garden did. We enjoyed the fruits of our labor very much, harvesting from every plant we planted. 


The home-grown watermelon were an absolute favorite. They were small (we got excited and greedy), but they were delicious. We even got to share our very largest watermelon with our favorite neighbors; a little family that lives two houses down from us. We do not talk a lot, but we do occasionally. They seem to be really nice people. :)

We had a beautiful summer and fall, dotted with trips to the zoo and the apple orchard. Smiles, love, laughter, an early start to the school year, surprising several-week stretches of the flu, but overall a very good year.

In August we got to bring home a new dog, Coco Chanel. :) She is four now, but was three at the time. 

She's a huge bundle of fur that we ended up trimming down to a much smaller bundle. Isn't she pretty, though? She is such a well-behaved girl. Giraffe is especially fond of her. Koala is too, but that passion is not exactly returned in spades. lol I'm sure she'll be more affectionate as Koala grows up a little. 


Winter came but did not really come. A sneeze of snow here, a dusting another time or two. Christmas came, with much preparation. It was an 'us' year. (We rotate on a three-year schedule of my family, his family, just us.) I knew we would not be able to afford a huge amount of gifts so I put every extra penny that did not go into the reduced number of gifts into food. (We were not able to make very much the last several years.) 

Why food? Food means time invested. It means that the girls and hubs and I laugh and sing and get messy together in preparation. We made way too many goodies. Giraffe and I threw ourselves into crochet, too. I made a ton of snowflake and peppermint dish/washcloth/potholders. Giraffe made and sold over fifty dollars worth of Christmas ornaments. It was so fun and so fulfilling! Come the actual day, we smiled as the girls opened their gifts and spent the day stuffing ourselves like pigs. It was lazy, messy, and lovely. It was perfect. :)



A day or two later, we got a cat! This is not a big deal to many people, probably, but considering that my husband and I are "not cat people", it is a big deal to us.

Her name is Katniss (yes, yes... HG). 

She's almost five and needed a new home with a loving family, so we gave her one. She was a slow warm-up (cats do not like change), but she is a lovely addition to our little nest. :) The girls are excited and Hubs and I have been won over, too. 

New Year showed up with plenty of fixings still in the fridge, freezer, counters, and containers of every size and shape. My parents came down to spend the day with the girls and me since hubs had to work. It is the last time I remember feeling like a person, actually.

The Start of Everything Bad...

I went into pains that came and went like a brewing storm in my body. This had been happening for three years. I always brushed it away as trapped wind even though the surgery that gave me that side effect was long past. 

By January 7th, I went into an attack that would not end. Ten hours later (the next morning) I was in the emergency room, utterly embarrassed that 'gas' had brought me here. The doctor came in and declared my gallbladder was full of stones and sludge and was inflamed. He said that I needed to have it removed, but figured the surgeon would rather schedule it. He sent me home with an appointment for five days later. Those five days were pain-wracked days of misery. Grandparents took the Koala and Giraffe, and I laid around wanting the pain to end. I couldn't read, couldn't relax, couldn't play games to pass the time. I felt every minute like I was just waiting... waiting... waiting to get this poison out of my body.

Dr. S, the surgeon, walked into the room at his office the following Tuesday - literally took one look at me - and sent me in to have the offending organ removed. Hallelujah! We drove around the side of their building to the hospital entrance and rolled in, relieved that this long wait (Ha! Five days! Long!) was almost over. 

I was quickly admitted and placed into a 'jump' room so my new surgeon - Dr. M  - could get right to me after the patient he was already working on. The nurses tending me said the same thing we'd heard at Dr. S's office earlier that morning. Nobody could figure out why I'd been left to sit on a sick gallbladder for five days when my bloodwork spelled out clearly that it needed to be removed. 

Dr. M came whooshing in, touting his 26 years a surgeon and his 5,000 surgeries. He said, simply put, that by leaving me the extra five days, my gallbladder had become toxic and would more than likely leak and quite possibly kill me, were he to remove it that day. 

The First Drain Placed

To my dismay, he recommended a billiary drain be inserted into my badly infected organ... aaaand left there for six weeks. He wanted to drain as much infection as he could. We were really shocked by this news but he assured us (stating again his experience) that this was the only safe way to do things. 

My Disgusting Biliary Bag

In truth, we did not have too much time to process it as I was sent down to interventional radiology right after he left. I was supposed to be loopy and mildly sedated enough that I wouldn't feel/be aware of anything during the surgical procedure. 

Instead, I was wide awake and ended feeling the three pops of the needle followed by the indescribable pain of it searing into my sickly, inflamed organ. I panicked and began to sob, the surgeon panicked, the staff panicked... it was hell. I gripped the sides of the table and tried not to flail around or run for the hills. They yelled at each other to add x amount of drugs to my drip. I still feel like crying just at the thought. I wrote a longer version of that in a trauma group but I don't feel capable of reliving it again in greater detail right now. 

Flowers From Hubs and Sis

I was kept for two or three days and then sent home. It took me an additional six days for things like moving around and using the toilet to stop making me want to scream and cry. I finally got into the groove and tried to patiently wait out the six weeks. I also tried so hard to forget about the trauma of the drain insertion itself. I've had too much trauma in my life. This was not going to get me. I said to anyone who would listen, "I am okay as long as I never have to go through that again."

(Continued in another post, since this is already too long.)