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01.01.2020

My colectomy and IRA surgery.

A colectomy is a surgery to remove the colon from the body. IRA stands for ileorectal anastomosis. The plan is to take down the stoma, remove my colon, and then attach the small intestine to my rectum. Yes it is possible to live without a colon and I am living proof. Here is the story of my surgery.

From the time I got news from my surgeon about moving my IRA surgery up (I got the call on September 27) to the actual surgery date on October 11, I was in survival mode. Pain at my stoma site was constant 24/7. The fear of having a blockage at the retracted stoma opening was a real concern and the only way to prevent it was to eat very small portions or all liquid food. You can read about my experience with my ileostomy here. I was hungry and tired and counted down the days until I would yet again go onto the operating table. To be honest, I was in so much discomfort each day that an operation seems like a relief. I knew getting my colon out was irreversible, and there “could” be complications, but I didn’t second guess this choice. I was 99% excited and 1% nervous. This was the surgery I knew I wanted all along. I remember the follow up visit with my gastroenterologist after my colonoscopy in November 2018. He explained this surgery and how it would relieve colonic inertia. This gastroenterologist thought I may end up with an IRA reconnection someday. As much as that news was a shock, I knew that God intended for me to have this surgery. And here I am almost a year later, waiting eagerly to have my colon taken out forever.

When the body is depleted and “starving” for nutrition and food, it’s hard to focus and concentrate. My school work was hard to finish and I just wanted to be on the other side of surgery. The actual day came up so fast, that I didn’t have time to worry or ruminate about the complications. Thankfully this was probably God’s plan for me, knowing I love to research and find out all the information possible. But due to my decreased concentration and lack of time, I just went into the surgery, trusting in my surgeon and family to help me after. I knew my body was capable of this and I prepared as best as I could. I ate more protein daily to help build up the stores that I would need to heal my tissues after surgery. I got my room and clothes at home ready to have everything easily accessible.

October 11, 2019 5:00 am. I hardly got much sleep to be honest. This was due to waking up 5x to actually change my ostomy bag (not just empty it), I was in pain and hungry! I did just clear liquids on October 10, but didn’t need any laxatives or bowel prep. Hurray for that, because there was no way I wanted to touch laxatives again. I had a simple hospital bag packed with an outfit, phone charger, a few baby food pouches and tuna packets (incase I wanted something besides hospital food), and threw in a few depends women’s diapers.

I was well prepared for what was to come in terms of bowel movements. My surgeon warned me it would be from 6-20 times a day. I remember receiving this information, and my first reaction was, “that would be wonderful!” Most people would think going to the bathroom that many times a day is not having a quality life. But for me, that sounded like a miracle because I dealt with debilitating constipation or colonic inertia for most my life.

I also want to note that the loop ostomy was a very important diagnostic tool to help my surgeon and I determine how my body would react with permanently taking out the colon. It proved that my small intestine did work and my bowel movements would be about 6x a day (if it stayed consistent with my ileostomy output since I emptied the bag 6x a day.) The hope was that my electrolytes were being properly absorbed by my small intestine instead of the colon, and I would not experience extreme dehydration since things were bypassed for 5 months. But we wouldn’t know for sure until after the procedure how my body would react. Given that my BMI was clinically underweight, I had more of a risk for post surgical complications. UR

8:00 am I’m out the door and it starts to snow for the first time of the year. We were expecting a big snow storm in Minnesota actually over the weekend. But I still decided to go without a coat, because it’s not like I was going to be outside. I learned over the past several hospital stays that I need so little when staying at the hospital. Basically they have everything you need! My dad drove me to the hospital and actually he was the only family in town for this surgery. By now I was used to surgery and it didn’t scare me. I wished my mom was here too, but she was out of town for another month. So my dad and I headed 30 min to the hospital which was a familiar route.

9:00 am My dad drops me off at the maim entrance and I know exactly where to go to check in at Surgery Admitting. I get my picture taken for the new hospital system profile. My dad finds me and after I sign all the paperwork, we head upstairs to the surgery prep wing. I actually stayed here after one of my prolapse surgeries because all the post-opt rooms were full. Everything is so familiar and I wasn’t stressed. I was hoping and praying my bag would stay on just a few more hours until surgery. I decided to not even bring back-up supplies. I was determined the ostomy bag I put on this morning was going to be my last and I was pretty lucky my body cooperated. Though since I wasn’t eating, my stoma was not retracting and pulling inside, and any liquid that came out was properly going into the bag. If I were eating the day before, this would be a different story and my stoma would be retracted inside and liquid seeping out the edges.

I am asked my name and birthday every 5-10 minutes or so which is typical of hospital staff before surgery. I am told to change into the “bair hugger” operating gown that can heat up to keep my body temperature stable. I’m brought into a huge pre-opt room will a wall full of windows. I probably got the nicest in the hospital! My dad meets me in there and we are in awe of the winter storm clouds rolling in. The view kept us pretty happy for hours as we waited.

10:00 am the pre opt nurse comes in and successfully puts in 2 iv’s needed for surgery, one in my hand and one in my arm. Blood had been taken and was sent down to the lab. We got a call 30 min later and by the tone of the nurses voice, I knew something was up. My potassium was significantly low due to 24+ hours of only liquids. So without raising it to a healthy level, surgery couldn’t be started. Since nothing can be given by mouth at this point, IV potassium was ordered. We ran into a problem because I have a lidocaine allergy and lidocaine is needed to buffer the topical burn that accompanies IV potassium. The nicest anesthesiologist was assigned my case and he decided to just start the IV potassium without lidocaine after I am put to sleep and before they start operating.

11:00 am My surgery was supposed to start by now, but my surgeon had 2 cases earlier this morning down the road at the hospital’s same day procedure clinic. I remember he specifically scheduled my surgery so mine was the main case of the day. It was estimated to be a 4-6 hour surgery. And while we waited, my dad and I talked over the phone to my sisters and mom. I got up to go to the bathroom and got really lightheaded due to low potassium. I was so ready to be done with this ileostomy bag.

12:00 pm Dr. B, my surgeon arrives! He comes with news that his plan has changed regarding the type of surgery he will be doing on me. Instead of doing a completely robotic surgery, I would have my colectomy done laparoscopy and the reconnection IRA part done more manually. There were a few reasons for this last minute change. One was that his assistant surgical PA got called home for a family emergency. So the main help he has now is a surgical nurse (whom he trusted very much). There were also no surgical residents who had enough experience to rely on solely for help. So instead of the PA helping with the robotic arms, the surgical nurse would be the one helping with the laparoscopic ports. Also, given my small size, I had to be treated like a pediatric case. I’m only 5’1” and 100 lbs so the 5 robotic arms would not have fit horizontally in my abdomen, while being spaced 1-2in apart. The laparoscopic ports could be placed in different locations and were smaller entry ports. The only downside is that my pelvic bikini scar would be bigger because he would need more room to pull out my colon and surgical attach my small intestine to my rectum. Dr. B assured me that he has done it this way for the longest time and it has a high success rate. I was totally ok with this change and trusted God had this under control.

I then ask Dr. B one last time of the surgical plan and have him promise me that he won’t keep any of my colon, not even a few centimeters. He agrees, even though typically he keeps part of the sigmoid for most patients. Deep inside, I knew my whole entire colon needed to come out and I spoke up clearly with my wishes. Since my surgeon was the one who did my ileostomy and my prolapse revision, he trusted that I knew what I wanted. I am thankful for that and I trusted him too.

Dr. B mentions that he first has to eat lunch and then will be meeting me in the operating room! He gets up and shakes my dad’s hand and I see in my dad’s eyes the trust he has in my surgeon. This gave me reassurance and peace. We had to trust him with my life since he would be opening up my body and removing an organ. As he walks out the room, he turns around and points at me. “I’ll see you in there “. Even though I won’t remember him in there because i’ll be asleep, it gives me comfort that he will be there the whole time making sure I get through it. At that moment it hits me that this is a really big surgery. My nerves kick in and I break out in a cold sweat, but look over at my dad and he reassures me of the whole thing. I need this surgery and I have been preparing all year! We have all out family and friends praying too, it will be ok.

1:00 pm The pre operating IV antibiotic was brought in, so I knew we were getting close to the actual surgery time! The nurse anesthetist (who was young and looked like my age actually) comes in with the very nice surgical nurse and they go over the plan with me. I ask them if I can please be awake and get to see the operating room. They agree to give me a small dose of the nerve reducing anesthesia medication so I can see the whole thing. I give my dad the biggest hug goodbye and tell him “I’ll see you later!”. One last glance and they are wheeling me down the hall. The nurse anesthetist pushes a small dose of the medication and honestly I didn’t feel any different. I am pretty sure I was becoming resistant to this medication after receiving it so many times this year before the operating room.

I get in the operating room and boy it is cold! I remember everything positioned so perfectly in the room and they explain the pieces of equipment. I move myself onto the hard operating bed and help them position my arms and legs. At one point the nurse anesthetist smiles at me and asks “are you getting sleepy at all?” At that point they put on the oxygen mask and decided to give me the stronger meds to really knock me out. “Oh my goodness, this is it I thought”, as I took a big breath. And that was that, I was fast asleep.

2:00 pm My surgery starts. I obviously wasn’t wake for this part, but I will fill you in from what my dad and surgeon told me. My dad goes to wait in the waiting room, assuming it will be 4-6 hours. By the 5 hour mark, there was still no word and my name had not appeared on the surgical board. People went home and the hospital cleared out, until he was the last one waiting there alone. He got nervous thinking something went wrong, and finally at 10 pm Dr. B walks out to let me dad know what happened. He says that my surgery went well (phew! what a relief for my dad). But the surgery did take 8 hours, and there were a few reasons why it took so long. One reason was because my surgeon is very thorough and careful, so he takes his time. Also, my weight was low and he had to be extra careful not to knick any organs or bone when he was cutting the colon away from the connective tissue.

I had 4 laparoscopic incisions, but the one by my left hip was actually not usable because it was placed too close to the bone. Instead to get a better view, he cut the bikini incision a few inches longer, so it ended up being about 5 inches. Nothing went wrong, it was just slightly different than expected. After pulling out my colon, Dr. B noticed that my colon was very dilated, stretched out, longer than normal, and atonic (no muscle tone). One concern he saw, was that my rectum was also stretched out and dilated. So during surgery, he proceeded and cut off the colon from the rectum muscle. After cutting out and pulling the colon from my body, the next step was to attach the small intestine to the rectum. Once he stapled the 2 together, immediately the rectum shrank to normal size, compatible to fit the small intestine’s diameter. Crazy how my body did that so naturally and how surgery can be used to perfect a dysfunctional body. My insides were being rearranged to be given the chance to work again.

Though before cutting the colon away, he cut the stoma away from the abdominal wall and the internal stitches he placed in August to prevent the prolapses. He saw the stitches were still nicely intact and no additional scar tissue was made after that surgery. The ends of the colon and small intestine were stapled, so he could cut the colon out without anything seeping into my abdominal cavity. Then about 20 cm or 8 inches was removed of my small intestine before attaching it to the rectum. There needed to be good blood flow to connect the two successfully. My blood vessels previously attached to the colon were divided and redistributed to my small intestine.

As they were operating, they had to manually move my body from left side to right side to obtain the angles they needed. They also saw my uterus and it was moved gently to the side to get a clear field. The ileum of my small intestine was then connected to my rectum (hence the name, ileorectal anastomosis). It was done so with a surgical instrument that fused the 2 ends together with circle staples. These surgical staples will remain in my body forever. I personally think this was a fascinating surgery! My colon, with my appendix attached, was then sent to pathology for further testing.

11:00 pm I remember laying in the recovery bed and opening my eyes for the first time. It was a relief to be on the recovery floor and it was a familiar spot. I felt a lot of pressure in my head from the pain meds and anesthesia and my whole body was shaking. I’m not sure why it was shaking, maybe pain or maybe because I was cold. The nurse asked me if I am in pain and actually I said “yes”. I was too afraid to push the button with the dilaudid opioid, so I asked the nurse to. I actually didn’t feel relief from it but only an overwhelming wave of nausea that made my body shake more. I close my eyes and dose off but am startled by my surgeon Dr. B. He grabs the side rails of the bed and looks me in the eye to asks “Caroline, how are you?” I’m thinking…well it feel like I have been cut open! I can barely talk. But I managed to nod and say “ok”. He smiles and I hear him talking to the nurse letting her know how much blood I lost. It was 136 ml and thankfully this is minimal!

Next thing I know, they are wheeling me down the hall to my recovery inpatient room. As we get to the 4 west floor, and my dad rushes up beside me and smiles huge. He says to me a few times, “You did so well sweetheart!” and the sound of his voice made the world ok again. He actually was one step ahead of everyone else. My dad just knew the floor to go to and went on his own without waiting for the surgical pager to buzz. He knew I wanted to see him right away and I am so glad he was there.

We wheeled together to the room at the end if the hall. It had a big window but it was midnight by now. My dad notices my body shaking right away and asks if everything is ok. “I don’t know why this is happening” and was just as confused as him. My body had a mind of its own and it’s something I had never experienced before. I was scared but I was not alone. I muster up the brain powder and ask if everything went ok? He said “Yes it did. The whole colon is out, it just took a little longer than expected, but I’m all reconnected”. And so he pulled up a chair and sat with me for hours. I keep shaking and hesitantly ask for 1 more dose of the dilaudid. Again it didn’t help, but only made me incredibly nauseous. I was so thirsty and so I kept asking for ice and more ice and water. At one point the water just started spewing out of my mouth and it kept coming out. I aimed it over the bed and unfortunately onto my dad a few times. My dad was so patient and never got upset. The nurse wasn’t happy and took away all the ice and water. This was just a little bit of the tough love she gave me through the night. Eventually at 3am my dad said he has to get some sleep. So he said goodbye and that he was going to come in the morning.

I was wondering when I would first go poop. So I asked the nurse and she said most people take several days. I was alittle surprised because I thought it would be sooner. I ended up sleeping until the morning hours. It wasn’t even light out and 2 nurses came in. I must have told them my pain was ok during the night because I didn’t want the opioid. So this morning, Saturday October 12, I ask for IV Tylenol and they said they would ask the doctor on call. It took forever, like things normally do on weekends in the hospital and I decided that there was no way I was going to press the pain button again and experience that nausea. I guess I would just deal with the pain.

The next thing was the heparin injection, blood draw labs, and then attempting to walk. I had 3 IV sites, because one blew during surgery from the potassium. The morning “walk” was torturous. But actually even rolling to the side was hard. I needed help sitting up and when I did, my whole abdominal cavity dropped physically. It felt so strange and the gas pains were all around my abdomen. There was alot of gas, just like my ileostomy surgery. I actually think the gas pain was probably the worst part. I managed to stand and take 2 steps with 2 nurses helping me. I felt as if I were going to pass out and begged to lay down. We tried this again and the 3rd time, my dad was there to watch. I knew I needed to move, but my body has never felt so weak in my life. I kept thinking to myself “why can’t I do this? Why cant I walk like after my first surgery?”. The truth is, I was malnourished and was skin and bones. I had no reserves, no pain meds, and was physically past my limit. Tears streamed down my face as my body shook trying to walk to the door. The one nurse kept telling me one more step until my dad even stepped in and said “no more right now”. He saw what I felt.

My hair was a mess, my body was swollen and covered in surgical glue and iodine. I was hungry, thirsty and in pain. Each hour I focused on what was only right in front of me. It kinda felt like I was dying. As an outsider, my dad explained that he also saw my grandpa struggle in a similar way after he had open heart surgery. My dad was there for him, like he is here for me right now. He sat there, lovingly watching me hour after hour. I was in pain and relearning how to function without an organ. I could never have asked for more and am so lucky to have him. This colon surgery I had was pretty big.

My only wish now was that I wanted to poop. I was ok to drink clear liquids and had juice and water. I needed IV potassium again because my levels were low and it was administered at the slowest rate to prevent the burn without lidocaine. Eventually I was transitioned to the fizzy oral potassium drink. Dr. B was not in town during the weekend so the doctor on call made rounds to see me. He didn’t “ok” the Tylenol for some reason and didn’t even listen to my belly, but only looked at my incisions and went on his way. My old stoma site was tied shut with a single loop stitch. The other incisions were glued shut. It was amazing to see no ostomy bag. My dad just sat with me and I was mostly silent or sleeping. He talked with my mom and sisters and brother. I heard their voices and they told me how proud they were of me. But I could barely get out a “hi”.

Sunday October 13, 2019. It is the anniversary of Our Lady of Fatima and I pray today will be the day I poop. I just wanted to poop naturally for the first time in over 10 years. In the morning I felt gas and my intestine popping, juggling and sloshing to the sides. Those big shifts in my abdominal cavity were some of the strangest feelings. My intestine were trying find their new place without a big sluggish colon sitting there. Around 5 pm all of a sudden, my intestine started to get some gas out. An hour later, it was a constant trickle and flow and I learned that the depends diapers are life savers! It was humbling but also a relief! I remember in the middle of the night, I could’t hold it until the nurse came to get me to the toilet. After she came and got me to the toilet, I sat there and cried thinking of about how I just pooped myself. She wiped down my body and my back the gave me a fresh diaper. I still had my catheter in from surgery because it was too difficult to get up to walk to the toilet without her assistance. This new nurse was probably the nicest nurse I had and reassured me it will be ok, and it will get better. I got a few hours of sleep that night before my bowels woke me up again. But I am not complaining, I loved it!

There were many times where I actually just went in the diaper in bed because I was too exhausted to get up to the toilet. But the nurses really encouraged me to tell them a.s.a.p. so I could learn to go poop on the toilet. It was like potty training all over again. It was frustrating and painful at first, relearning and experiencing how my bowel movements were now functioning. The weeks leading up to the surgery I was worried if I would remember how to “go” after having an ileostomy for 5 months. But the body is amazing and I sure remembered. Without a colon, the stuff coming out was pure liquid and would be that way until I start eating and the intestine relearn to absorb water like the colon once did. This was all unknown territory for me.

I was still full of drugs from surgery and happy one moment and sad the next. I also remember missing my mom so much Sunday night and just wanted her to be sitting by me. But this surgery was not originally planned to be in October. It was supposed to be at the end of November, so she could he home for it. God had other plans and honestly my body wasn’t going to last that long because I was almost starving. I needed the surgery now, my surgeon knew it, and I knew it. Life doesn’t go as planned and I just had to realize this was the way God planned, and it was best.

8 am Monday morning, I was already up from going to the bathroom and trying to walk again. This time they gave me the walker to lean onto and I successfully got to the door and back without anyone supporting me. Dr. B was back and came in to see me. He commented how good I look. I didn’t feel too great, but maybe I was turning a corner. This was my first time talking with him since that moment I saw him post opt. He took a good look at my abdomen and pressed around. He changed the gauze on my stitched up stoma site. He told me about the surgery, explaining that even though it took longer, it went great. He reassured me that he flushed the anastomosis connection site and there was no chance of a leak. None of my colon was left, just the small intestine and rectum. I told him how often I was going to the bathroom since Sunday evening. I said I am so very happy and I love this new intestine. It’s way better than before and I am so thankful. He decided to boost my diet form clear liquids to full liquids for lunch and then if I do ok, a low residual diet for dinner. I still was no on any pain meds and he was shocked by this, but I just did what I had to do. He ordered anti nausea meds which I needed as my intestine were a bit shocked to the eating/drinking food after surgery. I also got my cathedar removed by the nurse soon after he left the room.

Gas was still the worst part about introducing new foods, but my dad stuck around and that helped the time pass. He helped get me up and walking without the walker finally! I was determined by the end of the day to walk to the end of the hall. In total I got in 5 walks on Monday and I think that helped the healing and my intestine start settling in place. Each time I got stronger and it was only 2 days ago I could barley get in 2 steps. My dad brought me fresh grapefruit juice, green juice, and cranberry juice from Trader Joe’s. For diner, I successfully ate scrambled eggs, a few bites of salmon and an ensure drink. At first the small of food was horrendous, but slowly it got better. At 6 pm we talked with some family over the phone and the nurse took out one both IV’s since I was successfully drinking and emptying my bladder. These were all huge steps after having colon surgery only 3 days ago. To me it seems like a miracle that my intestine are working and I was pooping every few hours. I was thankful every hour.

Tuesday October 15 went like this. My blood labs were routinely taken, nurses checked on me, Dr. B checked on me, walked down the hall with no walker and successfully ate. Everytime I went to the bathroom, my dad and I celebrated. Sometimes farts turned into poops, but we just laughed and that is what the diaper is for. My dad knew how much this surgery meant and he kept saying how surreal this is that I have no ostomy bag and I can actually poop for the first time in over 10 years. He shared my joy equally and I am so thankful to have my family walk this journey with me. In total, I was averaging going to the bathroom 12x a day. It would eventually slow down to 6x a day or so after a few weeks.

Dr. B said I successfully had to eat 2 meals and then I could actually go home today. It felt so soon, but I was doing pretty good recovery wise and there wasn’t more the hospital could do. I got out my real clothes and slipped them carefully over my fresh incisions. I was taught how to tape some gauze over my stoma site and what to watch for over the next two weeks. There was very low chance of a rupture at the anastomosis site since my surgeon did a side-to-end connection and flushed the site with saline to check for leaks at the end of surgery.

I am in awe of this new body and am thanking God each day that I got to have surgery, and that it was successful. I felt like I had made it to the finish line, and that I was given another chance at life. No more ostomy bag, no more constipation, no more torturous testing. My dad helped get my things together and got me settled in the wheel chair. He rolled me down the familiar hospital hallways and to the lobby. I was going home today! This was my 7th surgery this year and it was going to be my last.

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Posted By Caroline Lunger 7 Comments

01.05.2018

Blessed is she who has believed

Blessed.

It has been on my heart to write. To get out the jumbled words, the fierce memory of pain, the rawness of life. This sort of pain only comes with a tear half fallen. The kind that wants to hold back, but can’t, because life needs to go on.

Only hope can swaddle this pain and make it precious again. Only love can breath belief into her shattered heart. Her dreams will never fall if she reaches out and believes in this Love.

“Blessed is she who has believed that the Lord would fulfill his promises to her!” Luke 1:45

This verse struck me still as I glanced intently at my favorite priest, all snuggled in his big green nursing home chair.

An “old soul” is a lovely thing. I cherish the moments I spend with those who simply understand the wonders, depths, valleys of tears and joys of life. Its a connection where age doesn’t seem to matter. For myself, sometimes it takes great effort to understand others deep logical thoughts. But I know that just being and staying present in the moment can be just as important.
I recently visited my old priest, who has finally transitioned to a lovely nursing home. Coincidently our stories had a few similarities God wanted to point out to me.

The pretty baby pink wallpaper, the crucifixes on the wall, and the countless prayer cards pasted in the halls, were the first simple reminders of the familiar memories at St. Marys hospital in Mayo Clinic (Where I had spent the past 2 weeks) . Then there was that routine syringe injection which I didn’t mind watching, but again a flashback to the past two weeks. As I propped up his pillows, I was in reversed mode, because a week ago I was the one being propped up. We discussed pills, sleep, and daily raw frustrations. In-between silences, I listened to the softness of his breathing. I found myself slowly accepting my struggles instead of letting them strangle me like they had in the past. I saw he was content and human and not running or hiding from his illness.

Embrace now and heal

Internally I try to brush off tough stuff, saying to myself “it’s just part of life…right?” Yes of course life will be tough at times, but that also means we need to allow ourselves space to heal after. More importantly though, we need to live in the present and accept these crosse. Then “moving on in life” comes at a pace we don’t always expect. Our body needs to heal and our hearts and memories need to heal. Pain can do funny things to the brain. I feel like it can imprint deeper and harder into our memory.
I wanted to be free of fear- though I didn’t know how. I was being torn between trying to mourn the sick valley I plummeted into these past 3 months and mustering up sheer willpower to continue on. I was slipping on ice and felt like anywhere I tried to grip, I fell, I failed, I let others and myself down. What was God teaching me? God is teaching me patience and faith that the good is coming. Just like the verse “…the Lord would fulfill His promises for her”.

A timer is set 3x a day (aka beep until it drives me more crazy than the thought of taking the meds) to remind me to take the wicked nausea provoking antibiotics the hospital sent me home with. Its embarrassing to tell people I need to stay close to home.. because yep…I need a close running ground to the nearest evacuating site. I feel at times lonely and ill and unable to sometimes even muster up a morsel to say a peep to my brother in the other room. Words just escape me and my gland swells with fluid making the words feel like 1000 pins and needles stabbing my face. I never knew how words could be so special- the sound of voice and expressing of thoughts whenever and wherever is a gift. Seriously- don’t for a second take your words and ability to talk for granted.

Many times when sickness ails the whole body, talking becomes less and the person becomes more withdrawn. Company becomes more important than conversation. I have learned to simply enjoy people’s company- without words, without the muffles of lifes-going-on’s. Things became more simple. This is a gift because after all the words are stripped away, what is left is true raw love. It takes love to sit and be with a person you care about, but they cant lift their lips to say it in return. Love will accept this, say “ok these shortcomings wont define you”, and look deeply into their eyes and heart and reach them there . Its a silent Love. Its sort of like the saying ..” you know you are comfortable around someone if you don’t have to talk, but can just be”. Its all because acceptance and love has grown and words are not a necessity anymore.

The unseen pain:

I was a gradual process, but after my 2nd sinus surgery at the end of September at Mayo Clinic, I started to decline. First it was fatigue, then excessive nausea, then increased head pain/pressure. I was unable to keep up my routine and even reading got tough. Fevers every other day became the normal and it took effort to get up to eat/shower/etc. I struggled big time accepting that I needed help with tasks I loved to do just previous months before. I constantly asked myself- what is going on?
We guessed it was due to lacking treatment for my small intestine dysmobility. Or possibly my POTS symptoms were causing extra stress on my body. Or was it that I was exhausted after my Cleaveland trip?

But as weeks went by, my neck got very stiff and my jaw was in alot of pain. I got a mouthguard made because I was clenching my teeth so fiercely. Still God had me wait for answers, I continued to do my best with what was in front of me. But I was getting frustrated because I knew something was up! Eventually my family practice doctor and surgeon concluded it was due to a sinus infection and chronic fungal infection from my surgery. My eye started to become chronically swollen and a red peeling rash spread across my face. So another round of antibiotics was the treatment. My physical therapist was noticing a decrease in my neck mobility and I too was getting so uncomfortable that driving became too hard to do. She agreed it seemed like an infection and made a comment that stuck with me “maybe you just need a power dose of something to reach the infection..has anyone ever considered iv antibiotics?”

I was not up for seeing my ENT surgeon at Mayo Clinic (its a 2 hour drive), so I was referred to a local ENT dr. She was very smart and thoroughly scoped through my sinuses. It was not clear that I had an infection but my consistent fevers, rash and swelling were red flags. She was worried about the possibility of meningitis because I had neck stiffness and a chronic headache. She actually suggested that I go to the ER because my symptoms looked pretty bad and she didn’t want to play around. Again another comment that struck me was “you know.. Mayo Clinic has an ER and its attached to their hospital (who has all your records), this would be the best place to go.”
I wanted to pull my hair out because I was thoroughly exhausted and had just canceled my appointment with my ENT surgeon there. Though its not the first time someone has mentioned that if I ever needed an ER, Mayo Clinic was the place to go. Logically it never made sense to me because it was a 2 hour drive…but something struck a cord inside and a voice was whispering “go, it will be ok this time, trust the people around you.”

As I walked out if that appointment ready to pull my hair out, I decided now was the time to have courage and listen. I walked into the waiting room where my mom was actually sleeping and remembered all the times doctors told me to “just try out the Mayo clinic ER”. I was afraid they would send me away because a sinus infection isn’t life threatening. But something felt much worse and my bones were begging for relief. So after contemplating my thoughts for a good 5 min next to my sleeping mom, I woke her up. She quickly asked “how did it go?” and I calmly said “I think it’s finally time to try out the Mayo Clinic ER”.

God prepares us in amazing ways. The sheer instinct to let my mom nap, the openness of my heart to accept a hard task, and the gentle words placed in the mouths of wise medical professionals was all His doing. My moms response was like a hug that became words. She knew my fear of possibly being sent home even if we go to Mayo ER, but I think her instinct from God was the same. “Go and go now”. She offered to take us home to pack a bag incase, but I said “If I go home, I may change my mind, so its best we go now”. And off we went driving to the Mayo Clinic ER.

When we got to the waiting room, we needed something to eat and drink, so my mom dropped me of to wait. The waiting room was packed full and I waited for 4 long hours. I befriended a family there and shared a few hospital blankets and benches to use for resting. I was dosing off in sleep and exhaustion most of the time on the bench that was just a foot too small. My mom was again listening to Gods instinct grocery shopping for various foods and even went to walgreens to pick up overnight necessities and a discount clothing store for pjs.

The ER #1

Finally I was called back and placed in a pediatric ER room. The ER is connected to the bottom of the St. Marys hospital (this is the hospital Mayo clinic uses when their patients need procedures). They did various scans and tests and called in a specialist ENT doctor. Everyone was so incredibly kind there and we both had tremendous peace and confidence we were in the right place. We waited eagerly and intently through the wee hours of the morning.

I glanced through my watery eyes at my mom sleeping in the chair next to bed. She was beautiful sleeping there, such courage and patience. It was a dreadful wait thinking we would need to drive home at 4am in the morning with no sleep if they discharged me from the ER. The thought of it made me silently cry. It wasn’t until a nurse walks in with 2 syringes of fluid and a full iv bag. She looked me in the eye and apologized for the wait but the radiologist and ENT medical team were carefully examining my case and CT scan that was taken hours ago. She explained they saw what looked like a parotid infection (its the biggest saliva gland located in the cheek). It was swollen and inflamed and they decided its best I start on iv antibiotics. Actually my sinuses were healing quite well and its no wonder doctors have been confused with my symptoms. A wave of relief washed over me and it felt like God had finally answered my plee for help and relief from pain in my head from these past 3 months. So she started the 2 iv injections of antibiotics and they bundled me up (my temperature was teetering on 94 degrees) to wheel me upstairs to the hospital rooms.

The hospital stay #1

We got a private hospital room so my mom could stay on a cot overnight in the room
as well. It was so comforting to know she would be there understanding the process as I have never been admitted into a hospital overnight before. It was about 5:00am and we honestly just wanted to sleep at least an hour, so thats exactly what we did until we were awoken from the nurse to get my vitals. My mom decided it was best to get a few things from the car for herself and I, and while she was away, the first medical doctor came in to take a overall exam.

I was assigned a whole medical “team 1”, which is common at Mayo clinic (when minds work together-awesome things happen!) They continued to poke and take vitals and ask every question under the sun. Every day 3 nurses rotated shifts so there were a lot of personalities to interact with. Though everyone was incredibly nice. I never slept more than 1 hour at a time that Tuesday, but continued to follow the hospital schedule. I knew it was hard, but in the end this would lead to recovering from the deep parotid infection. Tuesday afternoon rolled by and my mom showers me with gifts that the local church gave me. A St. Therese rosary, 2 books, prayer cards, lots of prayers, and a mass offered in my intention from our dear priest.

Throughout the day I texted my family a few updates but was so exhausted, I was counting down the hours until I could sleep and be left alone. We slept Tuesday night and on Wednesday I finally realized that the antibiotics were working. The pressure was decreasing and even though I still was in pain, I started to have hope that indeed this was getting to the root. Wed afternoon my medical team again came in to talk about my treatment and discharging me from the hospital. I thought inside it seemed a little soon since I just started to feel inklings of feeling better, but they seemed assured the oral antibiotics they would send me home with would cover it. And so by 4:00 on Wed we got to go home!

Going home?

I was feeling more alive than I had in months so it wasn’t even an option to skip the John Paul 2 relics at my home church that evening. With the same clothes on our back from Monday, we walked in that church and prayed with the nuns as we touched the blood that once belonged to Saint John Paul 2. What a wonderful life long dream this was. He is my favorite saint and I felt as I touched his relic that God whispered into my soul “all is well”.

A few days into the oral antibiotic, I started to feel that bone tired fatigue, but chaulked it up to catching up on sleep. It wasn’t until Sunday evening that my temperature went to 99.5 degrees (thats high for me) and my face started to swell up red again. I knew something was wrong and cried as I slowly got dressed and tiptoed downstairs to ask my family to drive me to the local ER. I was devastated but I knew the oral antibiotic they sent me home with was not working (it was completely different from the 2 that they used in my ivs at the hospital). Typically a parotid infection can be caused by step or staph and its generally not necessarily to take a biopsy, so doctors treat one or the other.

Again, not thinking I would be more than a few hours at the ER to change the antibiotic, I slipped on my pjs and headed for the door, eagar to get the correct medication and relief. Though I suddenly walked backwards, grabbed my vitamins, an extra shirt, toothbrush and a few random overnight necessities. This was probably my guardian angel tapping me on the shoulder saying “this may not turn out like you are expecting”.

The ER take #2

And so once again I walk into our local ER and explained I was just in the hospital and probably needed someone to reassess my symptoms and possibly medication. The doctor agreed that the infection looked like it was not being treated properly and suggested we take another CT to compare to the one done a week ago. It was going to be the best diagnostic tool to see the infection. I did decline the IV injection which is typically used to highlight the infection, because I have neurological side affects from IV contrast. Sometimes you have to speak up, even if a nurse is giving you a hard time *lesson learned *. My brother and dad and mom sat in a row of folding chairs next to my ER bed. They made me smile and pass-by the time. My brother had brought 1 thing. His bible. Gosh, I love him to pieces, and he knows how to trust God with all his heart! We told each other our favorite bible stories and it was probably the best family bonding time we have had in a long time.

After awhile my brother and dad left to sleep, and once again it was my mom and I dosing off into the late hours of the night. At around 12:00 the doctor walks in very concerned. She explains my neck is fractured. I told her, yes I knew this and Mayo clinic did a full workup and determined its old from falling out of a tree at 2 years old and it’s stable. But she insisted the scan their radiologist read had a new fracture possibly life threatening and wanted to know if I had a hard fall in the past week. “No I had not!” I was a little surprised but didn’t panic and asked about the gland “does that look any different from last week? Is it still infected?” She said it looks about the same (swollen/infection) but decided that since my neck was “in-stable” and my infection had not resolved, I needed to go back to Mayo clinic. This time I was placed in a neck brace because they were not going to take any chances and they put an emergency code on the ambulance to get me down to Mayo asap! What usually takes 2 hours to get there, took 50 min by ambulance. Yes I did get to ride in an ambulance with sirens on and everything (secretly I always wanted a speeding ambulance ride and felt like Madeline).

I rode in the ambulance by myself and arrived straight into the St. Marys ER. They were quick to help me and the neurosurgeon soon walked in. He said that my scan looked the same and the radiologist was just being safe. Though actually the fracture is indeed old and I can take off the brace! Whew, glad that was cleared up fast. But that chaos sure got me down to Mayo and the care I needed asap to finally resolve the infection once again. Again I felt in such good care at Mayo and they had access to all my records and everyone thoroughly knew my case since I had so much documentation.

A young doctor walked in and determined that the infection was possibly a staph strain due to the nature of a parotid infection and how my skin looked. My mom finally met us in the room and the doctor explained that I would again need to be admitted into the hospital for more IV antibiotics and this time to treat it more thoroughly.

The hospital stay #2

So again I was bundled up and wheeled to a hospital room on the second floor- Francis floor 2 (named after st. Francis). We passed by various Catholic paintings and crosses as I was wheeled through the hallway at 4:00am in the morning. The Catholic influence in this hospital is amazing and so comforting. My room had a nice window view of downtown Rochester and of course a cross hanging on the simple pastel colored wall. This time we didn’t get a private room so my mom pulled up a lounge chair to make into a bed. I definitely felt this was a little bit of de-ja vu from last week, almost funny in a way. We made the most of the stay, despite still being in pain. I knew the ins and out of hospital life so I was more comfortable and confident as to what to do and expect.

The routine injections, the hourly doses of iv antibiotics, the nausea- it all was familiar. I drank a considerable amount of lime water to promote saliva flow to heal the infection. They were so impressed that I didn’t need the iv saline bag like last time. Though this time around, eating anything was particularly difficult and I remember on the second day when we transferred rooms (they had to eventually give me a private room because I was at high risk for MRSA) the movement made me so nauseous I darted for the bathroom and the nurse became genuinely concerned. The day-nurse I had for this stay stayed consistent for each day, which I found very nice and less questions were asked because he knew me better.

The priest

On this stay I was offered a visit with the hospital priest by the hospital Chaplin. The priest patiently waited for the doctor to finish his consult with me and then walked up to the side of my hospital bed. He was a littler guy but had a big sincere heart. He was a Franciscan Priest, so the rest of his “work” involves serving in his Franciscan community. Once a week he comes to Mayo Clinic and visits the patients. Today he offered confession to me, which I happily accepted. Afterwards he gave me a healing blessing with some oil that smelled of cinnamon and spices!

The time he gifted me was priceless. He could see my struggling spirt, having dealt with illness and pain for so long. Though he also knew deep down that I have what it takes to move on, to carry on, and to fight with the God given strength and endurance that God has given me. He said it perfectly when he mentioned “do you best, and leave the rest to God.” He instructed me that I am to try at every task even though I may fail. I was to simply try with my best ability and not be scared of failure. Its like he knew I was afraid of recovery- of the body I was living in- and how it’s different from months ago when I was more vibrant and healthy. I didn’t know how I was going to do it. To face reality that I had to take more rest days, to space out activities and take life at a slower pace. He knew this heartache was painful but he put faith in the Almighty God and that ahe will bless me and do great things with me.

The priest said I have a mission, one of serving, one of Love. Its a different kind though, because I’m not always physically up for service activities. Its a service of self. Of a smile, a handshake, a hug. Its the way I can be present and care genuinely for those around me. Its the words I speak that are filled with Gods love and the stories I tell that fill others with hope. Its these blog posts, my way of sharing of Gods love and Mercy for everyone. Its how I believe that YES God is healing me and I choose to let him bless me. “Blessed is she who has believed.” These words are true and powerful. Believing in something better and something unseen. This something is God and all of his goodness. I choose to cling to hope and confidence that God is healing me, despite unusual infections, hospital stays and diagnosis’s.

Heart and Soul

Have you ever asked a sick person about their heart and soul? Their body may look weary and worn, but their soul may possibly be healthy and strong because Gods healing has touched the most important aspect of them. Its all up to God and his timing.

She knows the Lord.
She hears his voice.
She will not fear.
She chooses joy
…and carries on.

And so the little priest left through the same door he came in. But he left me with a gift, one of renewed confidence in Jesus and healing. Soon after, the nurse came back to finish moving me to a room across the hall because I possibly had MRSA which put me under an “infection code” and yellow protection gowns were needed. At least we got a private room and my mom could sleep on a cot this night. (I didn’t end up having MRSA but it was still a necessity precaution).

Tuesday rolled around and I actually started to feel slightly better despite the strong hourly iv antibiotics pumping through my system. It was still unsure why I got this parotid infection and I was soon going to rule out Sojourns syndrome on Wed. If I continue to have symptoms and by the end of Dec have no relief with the oral treatment, a cheek biopsy may be needed. The main internal medicine doctor was very kind, though and compassionate. He worked closely with the infectious disease department to determine exactly the course of oral antibiotics I needed to treat this over the next few weeks. It is not going to be an infection that clears us quickly, due to how inflamed my parotid gland looked. But he assured me that I can call anytime once I’m home and the Mayo Clinic team will get to the bottom of whatever is causing these reoccurring infections in my face (sinus, ear, and parotid). The possibilities could be an immune system disorder or even a genetic disorder, which will need further testing.

Really going home

Tuesday afternoon I felt more confident with my Mayo Clinic’s team plan. Even though I had a good month or two of healing from this infection at home, I was not in a dangerous situation with a spreading infection. On Tuesday I even got a visit from one of our good friends at our home parish who coincidently had an appointment at Mayo herself and she so thoughtfully stopped by my hospital room. Again during this stay, I had good friends and family praying for me back at home. Knowing this was so reassuring that God would hear our prayers, and had this whole situation in control. There is always room in suffering for God to make a greater good of it, if we submit to His will. I felt renewed hope in my body and spirit that God has a mission for me.

Thank you God for getting the infection under control this time! Amen.

I got discharged from the hospital at around 5:00 after my last 2 doses of the IV antibiotics. My mom and I stayed overnight at an air bnb blocks away from the hospital so we could easily get to my 7:30 am blood draw before my rheumatology appointment in the Mayo clinic physicians building (The hospital is separate from the doctors offices, they are down the road from each other in Rochester MN.) The Rheumatologist ruled out sjogren’s syndrome and said that my reoccurring face infections would need immunology, ENT and genetic work ups. So its definitely not the end to solving this, but I feel confident in Mayo Clinics care and plan for my health. Feeling worn out from having very little sleep and food, my mom and I booked it home for the 2 hour car ride. I think I cried when I got home and saw my own bed. Inside I was little defeated that I didn’t have solid answers, but I knew in my heart that I had to trust and believe in God’s promises for me. In the scilence of my prayers God is leading me and preparing me for something beautiful. He guides me to explore life with eyes of hope. I know I have a mission and even though I don’t have a clear answer, I will continue to live one day at a time loving others like Jesus did.

The top print from etsy

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Posted By Caroline Lunger 5 Comments

06.01.2017

Time to prepare for Mayo Clinic

Hi! Its time to let you all know what I have been up to since March. After a snow ball of events that took place in Colorado, I decided it was time to move back home to Minnesota. My new apartment was not working out and my immune system was suffering big time. It was time for support and a familiar environment (a.k.a home and family).

The sinus struggle

There was still the big question as to why my sinuses were not healing quickly from the January 24th surgery I got to open up my sinus cavity. My surgeon was beyond wonderful, but my symptoms post surgery had stumped her. She would not give up and continued to encourage me to get to the root of it.

It was a necessary surgery because basically my sinus structure was too narrow (post surgery was 1 mm) to allow anything to flow through. It was hollowed out to 1 cm and immediately I noticed less pressure, but the tissue was not healing which was alittle abnormal.

Presynope gets worse

Then when I moved from Boulder to Denver I started to experience more episodes of almost blacking out (presyncope) and was “seeing stars” almost 24/7. Since I have been through alot and had alot of strange symptoms in the past- I decided to brush it off and push through, hoping it would get better. It wasn’t until I couldn’t even stand through mass on Sunday without my knees buckling and my vision going grey that I knew I should reconsider my coping mechanism. I think I was afraid I was making it up in my head, so to cope I tried to pretend it wasn’t happening.

But as weeks went by, I got worse. The doctors took tests and treated infectious. Then they ruled out typical ailments that would cause this, but sent me home with no concrete answers or help for this constant state of feeling like I’m half consciousness.

Abnormal tests

The testing and scans that came back abnormal started to create a general picture of my health, which was not looking to good. My hormones were off, I was starting to become hyperthyroidism, my liver enzymes were elevated, my nerves were numb on one side of the body, I was constantly bloated and not digesting food or even getting it past my stomach, the sinuses were not healing, and my immune system markers were below normal (wow thats quite the list!). I was told to go to this doctor and that doctor, but the big question was “How do I get there if every time I stand, I almost black out?”. “How do I continue working as a nanny like this?” “How do I even do basic errands in this state?” Almost everything seemed like a marathon to my body.

My heart rate was almost always over 100BPM and I felt like I was always shaking on the inside. Most of the time I could not comprehend a full conversation because I was just trying to concentrate on keeping myself vertical and breathing.

I had been referred to a gastroenterologist and he basically said we can first do an endoscope, but if that comes back normal, I need a liver biopsy. In his opinion a 23 year old should not show inflammation of the liver. But his last words were- I think its all connected and you need to get to the bottom of it.

An outsiders perspective

As the days went by, I could barley get myself to the doctors appointment without blacking out, but I pushed through again, because I didn’t know where else to turn. I was the one living in my body and it is hard to be a barometer of yourself. My roommate and I did not see each other often because of our schedules, so this made it even harder to have a constant outsiders opinion on my condition. I only talked to my mom and dad over the phone on a regular basis (though after I came home, they admitted they could see a decline in my health, and was happy with the decision I made). The last thing I wanted was to go backwards in health, it was my worst fear, so I tried to cover it up with all my might, until it was no longer possible.

Eventually my therapist (who is a wonderful Christian lady) looked me in the eye and said that this is a “for real condition”. She was not sure what it was, but after hearing that my family was in Minnesota, immediately suggested I try to get into Mayo Clinic. The Holy Spirit was speaking through her and it actually stuck with me.

God works in wonderful ways and takes hard situations and turns them around for the better. I finally decided to accept that my body is weak and yes indeed I am getting worse. I was emotionally and mentally strung out because I was constantly pushing my physical limits and I had no break. I knew the right decision was to sublease my apartment and move back home until I could recover and get the necessary testing and procedures to figure this out. Its times in life like this that family is not only helpful but necessary.

God knew what He was doing when he planned our family and I was welcomed back home with more hugs and love then ever before. I was showered with unconditional love and despite a hard journey ahead, given encouragement and support to find answers. Its easy for me to doubt myself, but when someone I love and trust looks me in the eye, I find it sinks in a little better.

We agreed I could use 2 weeks of serious rest. To be honest, it was very hard to allow my body to rest after constantly ignoring the signals of exhaustion. I was almost numb and still not sure what to do next in my life. “Would I go back to Colorado and continue where I left off or would I stay here?” Everyone was asking me this question and I was asking myself the same thing.

It’s God plan

It wasn’t until pieces started to fall in place that I realized God wants me here in Minnesota. Over the next 2 months I had spurts of energy in between doctors appointment to do things that gave my life purpose. I connected with new wonderful people in my church community, I am helping start a young adult group, I got my license again, and I stood up in my older sisters wedding (it was a dream wedding and yep I did catch her wedding bouquet!)

To the outside I may look normal. But on the inside I don’t feel or function normal. I wanted to understand and not have to live with so many unanswered questions. Even though I got my license, I quickly realized my neck was in a lot of pain and I got lightheaded quickly with turning my head. I would constantly need hour long naps after quick errands so I decided its best to save it for special occasions. But making goals for “normal” life, that is not medical related, is healthy and much needed to keep my spirits up. It’s a daily balancing act.

Starting the process for Mayo Clinic

My primary doctor found I have lymes disease after doing a more extensive test. So I started on antibiotic treatment for that. It definitely made me more tired, but I have a lot of trust in this doctor, so I decided to stick with this treatment. Over the next few weeks I slowly started to transfer all the medical records from Colorado doctors to Minnesota. I also started the process of getting an appointment at Mayo clinic with Internal medicine and neurology. There were a lot of discussions between my mom and I, and it just seemed best to start the process sooner then later and be prepared to go in July (this was their soonest Internal Medicine appointment). I was not allowed to make an appointment with their neurology department because it goes by a case by case basis and its quite hard to get into. She has a few friends at church who go to Mayo Clinic and they gave her great advice about their system and how it works. They also passed on that there is such Hope and doctors at Mayo will not stop until they find an answer.

I filled out extensive applications, got doctors referrals, and transferred pages and packets of records for both departments. Then we waited.

Not accepted!

Mail came on Friday but I was not feeling too well, so it was after Mass on Easter Vigil that I spotted this envelope from Mayo Clinic. I opened it, but was shocked to find that they said it would not work out to be seen by their neurology department. The only way was to get an Internal Medicine appointment, which was scheduled for the end of July. I was confused and somewhat upset that on all days, Easter, God would allow such hard news. “How could I cope until then?”

My mom (being the wonderful mother she is and seeing clearly I needed to get in sooner) decided to make a phone call bright and early Monday morning April 17, asking if there is any possible way I could get in sooner. She explained I was only getting worse each week and my heart rate was constantly racing and the numbness had spread to my face.

Perfect timing

It was by Gods perfect timing, that the receptionist said they had a cancellation and I could get in on April 24. My eyes bugged out when she said she took the appointment for me and it was a week away. I was not sure if I was nervous or excited, but I knew one thing: this appointment was chosen in Gods timing and my job is to accept it with no question and of course thank my mom big time 😉

The week before my appointment I fought back countless fears like “what if they don’t find anything?” But its in times like this, that I put complete trust in God and His hand in my life. So I put one foot in front of the other and followed His lead.

to be continued “Mayo clinic day 1”

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Posted By Caroline Lunger 6 Comments

02.10.2017

Take courage and do it.

Dear God, whats wrong?

For weeks and months I had this funny feeling something was wrong. You know that feeling deep inside your bones. It’s an instinct you can’t shake but can’t find a solution for. I was smiling and going about my day on the outside, but on the inside, I was in pain and did not know what to do.

My nightly prayers felt they were not being answered. It did not seem like God was listening or guiding my step to the solution. Next step: I took my questions to my priest. The great thing about being Catholic is that we receive graces in the sacrament of reconciliation. Not only that, but the words a priest speaks can reach the very depths of your heart and soul. It’s necessary for life itself.

Honestly all I wanted was to know why I was still struggling with bits and pieces of my health (specifically my sinuses). I just wanted my immune system to kick in and kill my never ending sinus infection. It was a mystery to me. I wanted to believe that God made the body so it can heal itself when given the right tools…but why was mine struggling? I did not want to live on antibiotics for the rest of my life because I was beginning to feel very tired and run down. Why did it feel like I could never get a full breath? I was getting winded walking up the stairs to my apartment (I started thinking “am I THAT old?”)

My sinus anatomy

I knew my sinuses were very inflamed and infected and could not drain. Sinus problems haunted me since high school. I knew I could not breath through my nose. A year ago my doctor brought up the possibility that my reoccurring infections were due to an anatomical problem. The words flew past me because I was not ready to hear it. I was scared and stubborn of “giving up and giving into surgery”. God had more work to do on me obviously.

Once I moved to Colorado, the problem did not get better. But the newness of starting over was just what I needed. I was quickly led to skilled doctors, sinus specializing chiropractors, infectious disease specialists and nothing worked. I honestly was loosing hope the pain in my head would never go away. But I still held onto wanting to know and make the decisions.

The same words

When we want to control our lives, that is not good. God wants us to trust in Him.

I remember the day I saw a priest at a visiting church, he asked me if I was ok. I told him I was getting impatient and sicker by the day that no one could figure out these crazy sinus infections. Calmly he said that “God is willing this to happen, there is nothing I can do just yet.” Ouch! I was not crazy about this answer but I kept it in my memory.

Fast forward one month and I ask a different priest what he thinks, and the answer was almost identical. “There is not much you can do about this condition, but trust God has given this to you as a “gift” to change you.”

Fast forward one week and for the 3rd time I bring up this pain to my priest. He looked at me deeply in the eyes and said that he “thinks God has given me this sinus problem, not as a punishment but out of love. God only wants me to let go of what I am holding onto most in life…control”.

It finally clicked.

But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Matthew 19:26

All along I wanted to control this situation. I wanted to know the answer and just get better…all in a time frame. I was still scared of too much medicine. I was scared I would never get better.

I remember this day clearly and I sat down in the church pew and told God that I was ready for him to help and I would step down and let Him do the work. It’s when we become meek and humble that God can start to work within us. This is exactly what happened.

It’s time to listen, take courage and just do it

I got referred to an ENT weeks before Christmas break. I put it on the bottom of my list because I had been to one in MN and he basically did nothing. So then I go to MN to visit my family and was almost bed ridden with sinus pain for some of the time. I get home and spend New years eve in the ER with a worse infection. I guess I learned my lesson. My thought process was ” if it did not help before, why would it be any different now.” This is where I started to lean on my own understanding and figured I knew the answers.

But I could not shake a conversation my mom and I had when I first moved out here. She casually said “what if you find that one doctor in Boulder that actually can do something big, and give your body what it needs to recover.” After everything I had tried already, I thought why not and scheduled the ENT appointment.

I found myself sitting in the office of a skilled surgeon who simply pointed to the scan of my skull. She showed me the grooves and hollow spaces in my sinuses. I was fascinated..but there was one big problem- there was no passage way left for air. It was less then a mm between the bones.

It was not all in my head, finally an answer. Some people take it as bad news, but for me, it was a relief. The infections never left because there was always a pool of fluid stuck in my sinus cavity. The bones in my head were formed in a way that did not allow fluid to drain. I remember a time in high school where my sinuses felt “tight”. Over the years it slowly got worse, but I slowly got used to it until my normal. That “normal” transformed into a inkling something was not right. I went about my day obsessing on how others could breath so easily, and I could not!

Next step was to stick the scope inside to see whats going on. Kinda an intimidating gadget. I asked for no anesthetic because of the side effects it gives me. So I grip the sides on the chair, she injects the decongestant liquid and tries to maneuver the scope inside my sinuses. But no luck- it was pretty much swollen shut even with the strongest decongestant/membrane shrinker. At that point I knew there was no more thinking or pondering..there was one answer that I had to take the risk and just do it. Time to jump right in.

Time to let go

When I got the news sinus surgery was in my future. I asked the surgeon, how soon? She said we can try a few things…but I blurted out. “No please, I have tried so much, I just want to breath.” After going through the list of things to try before surgery (most of which I had already tried) we set a date 2 weeks out for the surgery. She completely agreed, I needed a change and relief from infections.

Wow that was quick! But she wanted to make sure that I did not have to go another month of antibiotics (I was already on month 7 of those bacteria killing pills.) Everything after that went smoothly like it was all in Gods hands. The paperwork, the phone conversations, the dates…it all just worked out. This kind of situation reminds me of how Gods timing works and feels. It’s almost too easy to be true. God never wants us to stress over the little things. All it took was my “yes” and becoming weak so God could do his work.

Bless me please

I asked for a blessing before my surgery, and my wise priest said a good will come of this. Not only will I get better physically, but I will get a chance to let go and trust God even more. It’s a scary thing to hand over your life to a surgeon and anesthesiologist. But he was right, its an opportunity to make peace with whatever control that fights inside.

When any of my friends of family heard of this upcoming surgery they all had the same response. “You will be so much better afterwards.” I did not believe anyone through all my fear and pain. So I was still trying to control the outcome, kinda silly, but I think this was my coping mechanism. I honestly think I was in more pain the months before the surgery then the weeks after.

The pressure inside was unsettling and suffocating. I felt numb. The numbness was just a sign that my body was tired of fighting this endless infection and it needed a helping hand. It was in this numbness that God worked deep inside my heart. He taught me its ok to let go of this fear and control. Its time to stop running from it, but take courage and do it.

Trust

After this, I did not hesitate. I made the appointments, took the bottles of pills and fasted before the big day (thats just part of the procedure before anesthesia.) I told the family’s I nanny, I would need time off since there is a limit to how much physical activity I’m allowed after. The week before I even went to confession.

I felt ready for the big day. I went through all the motions and slowly Gods will for me started to sink in. I finally chose to trust the unknown. I chose to trust that surgery was good. I was trusting help was on the way.

“Rise up; this matter is in your hands. We will support you, so take courage and do it.” Ezra 10:4

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Posted By Caroline Lunger Leave a Comment

01.07.2017

My step in the deep snow.

The first glance I got of the steep incline from the train window set my heart on fire. I honestly have no explanation for why a snow covered mountain gives me this joy and peace. Courage was in my soul. My adventure was just about to start and I knew I was going to love every second of it.

It started weeks before I boarded the mountain train. I was on the phone with my mom talking about Christmas break and the typical question came up “So…what do you want for Christmas?” I had always dreamed of taking my own adventure someday and I felt like the time was now. So I asked for a train ticket and an air bnb room in the mountains. It was not the typical gift, but my mom got just as excited as I did and said the experience I will get from this trip will last a lifetime. So the plans started forming…

Before I knew it It was 5:00 am and time to get out of bed to catch the first bus. I was so excited to know the day had come to have my adventure. The adventurous side of me often got squashed by my fragile health but today I was thanking God that I actually felt good. A big part of me wanted to find out what I can do and who I really was at this point in my life. I’m only 22 but I have gone through a lot with the ups and down of a chronic illness. I felt like God was tugging at my heart asking me to do something spontaneous and be ok with no knowing what comes next.

I took a few buses to get from Boulder to the Union station and it was quite fun hauling around a weekend bag through the big Denver city. God has a lot of fun things planned for me. The first was my train buddy. This 80 something year old grandpa who shared his story about life and his perseverance through a hurricane and his wife death and how he never lost his faith. I really do love getting to know older people because they have so much wisdom to share.

As the train slowly chugged up the mountain, my jaw started to drop out of awe and amazement. God created these mountains and the closer I got to the top, the closer I felt to Him. After the 10 minute long tunnel the view was pure white. Snow was piled high in Fraser and as I stepped of the train, I felt the cold pass me by. It was awesome because I love the cold. The snow was exactly what I needed too because Boulder was still sunny and warm. I was craving a cold snowy adventure. I quickly looked at my list of what I wanted to do up here in the mountains. Here is what I wrote: 1.) have a spontaneous adventure 2.) try something new 3.) make a snow angel 4.) make friends with random people 5.) listen to God’s voice 6.) eat snow

I was dropped off the train at the “station” which was basically an outdoor platform. I never considered a bus from the platform to the air bnb because I wanted the adventure of the mile walk in the snow…with my suitcase. Little did I know, the sidewalks were piled with snow so I ended up dragging my suitcase in the snow. I took a few stops to unload all the snow gear and put it on, to make the bag lighter. I’m sure people were wondering where exactly I was going. But the big question was.. did I know where I was going?

Eventually I made it and ended up getting a 5 second ride form a handy man up the very steep hill to the airbnb lodge. He wanted so badly to help, so I let him (don’t worry he looked like a nice stranger!) and he gave me a high five as I got out of the car. This little act of kindness gave me the security that this town was sincere and friendly, which indeed it is.

I was exhausted and took a nap right as I got in the door. Oh, but before that I found a spoon and bowl and filled it up with fresh snow to eat. Then when I woke up, it was time for exploring and finding food so I walked to the grocery store down the road and decided to pick up some things for the weekend. I got to know the friendly air bob hosts. The husband and wife showed me around the kitchen and made me feel very at home. They thought it was quite funny when they found out I ate snow. They told me they normally hand wash dishes and I turned around and quietly unloaded my bowl and spoon from the dishwasher. They asked if I ate dinner and I said “kinda…it was actually a bowl of snow.” They broke out laughing but I guess it was not they typical first meal their guests eat :). I decided to go to bed semi-early so I could wake up for church feeling refreshed. The snow was just starting to fall and I excited for the morning.

I woke up to big thumps on the roof. The snow was getting heavy and sliding off the roof. Kinda a fun way to wake up. The first thing I noticed was how clean mountain air is (It felt so good to breath!).

So sometimes there are those people you meet in life that really make an impression on your life. I got to spend the pink Sunday (the 3rd Sunday of Advent) with the best Catholics in the Mountains. A friend picked me up and we ended up driving to get another young guy and girl. We are all about the same age and share the same faith so it was really fun to talk and get to know each other.

As we entered the beautiful church of Our Lady of the Snow and found our pew, the priest opens the confessional door with a young girl fainted in his arms. I had met this priest when I came to this town with my mom on our little trip to this mountain town a few months before. It was a simple look as he darted his eyes to our pew that he wanted our help. I offer water to the young girl as my friend checks her pulse. Her mom runs through the door to see what is going on with her daughter. It ended up being little bit of dehydration.

I remember the mom looking up at me and asking “who are you?” This moment was imprinted in my memory because it was a question I have been asking myself for a while and partly the reason why I wanted this adventure…to understand better the person God is forming me into. I explained I am visiting from Boulder and my friend goes to this church. But that question really got me thinking inside about how God is shaping me.

Yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand. ~Isaiah 64:8

Community is a foundation of daily life. It’s not that I have not found great people in Boulder, but I feel like I’m searching for my community still. This unsettled feeling is God trying to tell me to push a little further and keep seeking until I find the people He wants me to be surrounded by. This small mountain parish gave me a glimpse of Gods Love.

People need each other and there is no way around it. I sometimes try to force myself to be ok in certain situations, a big one is feeling lonely in a new environment. I crave a familiar face or a voice but all that is familiar is back in Minnesota. A phone call to family helps, but I know Gods is opening a door in my life to new people and opportunities.

The rest of the day was filled with witnessing unexpected goodness of these new Catholic friends. Its always a relief to be sitting around people where you can watch a movie about John Paul 2, talk about God, your favorite saints, pray the rosary and listen to Catholic music. Allowing God into your day is so natural and fulfilling when you are surrounded by people who Love God with all their heart and mind. The 4 of us made a fun breakfast together, did random walks in the snow, and I even got my snow angel in :).

One memorable thing was pulling out a rope rosary I had been carrying around with me for 2 weeks. I had a feeling I was going to give it away to someone and it was one of the young Catholic guys I met that weekend. He is discerning the priesthood and liked to say the rosary. So I found it fitting and he could wear it on his wrist like I saw my brother and friends back at home do. I like how God prepares us in random ways like that.

I find that true friends help each other grow in their faith. It does not always matter how long you know the person or even how much you know about them. Sometimes you just get the opportunity to be friends easily and conversation comes naturally. Those are the friendships and people God had planned from the beginning.

The 3rd day (Monday) was a strange day. I felt like I had not gotten closure to the questions in my heart. I walked around the town and got some coffee. But the day felt empty. I was scheduled to board the train at 5:00 and honestly I didn’t want to leave because I think I fell in love with the mountain town. I decided to meet my friend before he had to go to work. I had no idea I was in for a hike in the deep snow, but its exactly what was missing from my adventure.

It was a bit of a struggle, one foot off the path and you got buried up to your thigh in cold fluffy snow. So this is what hiking in snow was like! I was stepping in deep snow and taking the plunge and risk of freezing my toes off. But I didn’t care really about being cold. All I wanted was to hear Gods answers to the questions I had holding inside. It was silent so I just kept walking.

Thats how life is sometimes. You just have to keep walking, one step at a time. It may be a desert you are walking in, or a rainforest or on a beach. But for me, its stepping in deep snow. Blindness to if the step in front of me will lead me to get buried in snow or if I will actually keep my balance. A friend walking behind making sure I don’t freeze me toes off helps too.

I willingly jumped on a train to lead me here. I opened my heart to the unexpected. Why? Because honestly I felt like I was running from something inside. I wanted to find out what and I wanted to let God dig me out of the snow and reach out his hand. It was time I let go and trust God.

“Wherever You Go”

There’s a train leaving your heart tonight.
There’s a silence inside your head and you’re running you’re running from it.

But I’m coming for you, coming for you, wherever you go.
I’m coming for you, I’m coming for you wherever you go.

Open your hands and look into my eyes; all that you see here,
you’ll soon leave behind, so open your hands and look into my eyes
’cause I’m coming for you, coming for you wherever you go

As I fell over and over again into the deep snow, the fear of sinking slipped away. Before now I was very scared of the deepness of life. I was scared of more pain. I avoiding making mistakes. But all of this blocked off the love God was trying to place into my life. He was coming for me, wherever I was going.

Stepping into the deep can be scary but fun too. There is joy in getting buried in snow even if the cold stings. Sometimes we can’t hear God, but we can only see and experience what He is doing in our lives.

I left Fraser ready to start a new chapter of my life. I was ready to accept any pain and deepness in front of me. But I was also ready to experience joy in every step I take. I knew I needed to trust God would bring me good catholic friends (close by) to guide my step or simply walk along side of me, because we are not meant to live life alone.

Life is about sharing Gods love. Having joy and willingness to help guide our friends on the path to God and also let them help us too, is the best gift.

So a week goes by and I repack to leave for Minnesota. I was a bit nervous going back home for the first time since I moved here. So much has changed, but it was time to get on that plane to go meet my family back home for Christmas. The trip was filled with love from my siblings, parents, friends, and Coopers slobbers and hair. It was exactly what I needed. A big dose of love and support. Only pictures can describe how fulfilling this trip was.

I did not know that my leaving the hometown of Minnesota can become the source of talk among families. I honestly don’t mind people talking because its a good story. “A sick young Caroline gets better and decides to follow Gods will and leave to the mountain state. Not knowing anyone or even any street but the call in her heart got her on her feet.”

I do miss my big snuggle bug. I got used to sleeping with orange rubber toys and waking up with dried up slobber on my face. I found myself sneaking into my sisters room to snuggle up next to them at night. I sat at the top of the stairs listening to my parents conversations as they cleaned up the kitchen. As much as I dreaded the drilling/pounding for the kitchen lights, stove, countertops, faucets, etc. (aka project make-lunger-kitchen-the-heart-of-the-home), I eagerly awaited seeing the handy men from my church that I grew up at. I cherished the familiar voices, the many hugs and kisses and the cold winter icy snow and the howling wind across the Minnesota lake. The nonstop dinner conversations and banana split therapy for a down day are only a glimpse into the love my family has for each other. Never before have I appreciated home as much.

I knew it was going to be hard to leave, but remembering that God brought me to Colorado gave me the reassurance that I will survive once I got back. It took a lot of willpower to convince myself I will be OK. Knowing I had no family or good friends waiting for me, gave me a feeling of emptiness. I did not realize this emptiness was being filled with sadness instead of joy and excitement for new opportunities.

God has allowed this emptiness and I decided it will only be filled with His Love. All I needed to do was lift up my eyes to Him and reach out my hand. Trust.

I got to the Denver airport exhausted and feeling like I left something. The feeling was very truthful becasue I did leave something behind me. I cleared away any lie that I had told the person I used to be when I was very sick. I had shown my home town its possible to change, its possible to do the impossible if God is your guide.

My childhood friend in Minnesota told me that every hardship I have endured while living in Colorado was necessary and it ultimately got me to the path that God has planned for me. It’s here, and I feel it with all my heart, but the feeling is emptiness. It’s emptiness that is going to only be filled with Gods plans for my life that only He knows right now. What’s left for me to do, is be patient and keep walking in the deep snow, unafraid of sinking. I have learned that control only fills the heart with sadness and fear. Emptiness can be scary but it can be so good.

Feeling broken is ok. Its part of Gods plan to rebuild us. Stepping in the deep snow and doing what I am scared of, breaks down the walls of lies and fears of the past. Something is needed to break the cycle for each and everyone of us. We all get weary and need a friend to walk along side of us, and its ok to sometimes reach your hand out so they can pull us out the deep snow when we fall off the path.

I love these lyrics of Audrey Assad’s song…
“You’ve been let down, it’s true
Your pain is so easy to see
You’re haunted by your history
And it feels like you’ve got no escape

Lift up your head
Help is on the way
And it won’t pass you by
You just gotta reach out your hand

Lift up your eyes
Love is on the way
And it won’t pass you by
You just gotta reach out your hand”

Not much time has gone by and I am already seeing Gods love fill this emptiness I once thought was bad. Catholic families I never knew before have let me care for their kids. Being a nanny and caring for Gods children gives me joy. Each day something new happens and you have to tackle it right on the spot.

I don’t fear being lonely anymore but instead I pray for the people in my life and the people I will meet in the future. I want to show them that once they are broken down and have that hole of emptiness, it can be filled, but only with Gods love. Even if its only a smile, the light inside of them has been lit.

A person once told me that when I feel unsettled, its God trying to speak to us so we do something about it. Peace is what God wants for us and its what we should seek. We should not settle but always seek for a true and honest life.

It was about 5:00pm mountain time and I was watching the horizon as I got closer to Boulder. I was tried from the long day of travel and was already missing home. I was lacking courage. But a glimpse of the snow filled mountains lit me heart of fire once agin. I took a deep breath, it will all be ok. I forgot that feeling and instantly the emptiness inside was filled with hope and courage. God speaks to each of us in different ways and he was speaking to me at that very moment.

Deep snow is beautiful because its there that I find Gods helping hand waiting for me. It’s in the deep snow I find happiness.

“It is Jesus that you seek when you dream of happiness; He is waiting for you when nothing else you find satisfies you; He is the beauty to which you are so attracted; it is He who provoked you with that thirst for fullness that will not let you settle for compromise; it is He who urges you to shed the masks of a false life; it is He who reads in your heart your most genuine choices, the choices that others try to stifle.

It is Jesus who stirs in you the desire to do something great with your lives, the will to follow an ideal, the refusal to allow yourselves to be ground down by mediocrity, the courage to commit yourselves humbly and patiently to improving yourselves and society, making the world more human and more fraternal.”

― Pope John Paul II

To complete this season of my life in one blog post I want to wrap up a few things. I’m still studying to be a catholic doula. I get antsy on my days off that are set aside for studying so I bounce around on my exercise ball/chair, listening to Audrey Assad, eat spoon fulls of brain food (coconut oil) and sniffle through boxes of tissues (aka 4th sinus infection in 6 months!). So that left me bringing in new Years eve with an unexpected visit to the Dr. and getting prescribed antibiotics and sinus surgery soon to expand my ever beautiful sinus bones that God designed a little too narrow. Please pray for me, I’m a bit nervous.

I met a great Catholic friend who loves saying novenas and also eats paleo. I’m keeping myself occupied nannying cute little ones and enjoying getting dumped in snow this past week in Boulder. I picked my patron saint of 2017- St. Gianna. I find it fitting because this year I am nannying and studying to be a Catholic doula.

God is calling me to live each day and breathe each breath to the fullest. It’s good and I’m thankful.

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Posted By Caroline Lunger Leave a Comment

My colectomy and IRA surgery.

Blessed is she who has believed

Time to prepare for Mayo Clinic

Take courage and do it.

My step in the deep snow.

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