My Crohn's Story: - The Homemaking Warrior

Part One: The Day It All Started

In June of 2014, I got done with a temporary teaching job being the preschool teacher at the christian school my husband and I graduated from. I was thankful for that job and how it helped me grow. I loved teaching. It was a dream come true. I was ready for a break, though. I was going to miss getting a pay check, but I figured something else would come my way when the time was right. When I was working, I had been able to pay off a snowmobile and grow our savings. We didn’t necessarily need my income so I enjoyed the time off and waited for what God had next.

Little did I know, by December, I would be living a nightmare.

That December my body betrayed me. It was literally like turning on a light switch. The evening everything went wrong… I don’t think I will ever forget it. That day I cleaned our entire little apartment, showered and even made dinner.

I remember being so full of joy that day. Thinking about hosting Christmas at our place that year and all the fun Christmas things planned for the month.Then we ate dinner that night. Nothing has been the same since after I ate that meal. You better believe I have thought more times than I can count, “if I just didn’t eat that meal, I would be fine”. Of course, it wasn’t what I ate, but when something like that happens to you, you just want something to blame or to be able to pin point the reason why it happened to you.

Little did I know, by December, I would be living a nightmare.

Part Two: Denial to Acceptance

As December ended and I continued to feel more and more lousy, I knew I needed to do something. I decided to try cutting out gluten. That seemed to help some, so I thought may be I was gluten intolerant.

At the end of January, I had a pain in my right side that was different than the two times before that happened in December. I went to urgent care and then to the hospital for lab work and an ultrasound. I also had a follow up visit with my NP at the time. At that appointment, she reviewed the lab results form the hospital which reveled I was anemic. The results from the ultrasound showed that everything was normal. At that appointment, I had more labs done to test for Celiacs Disease that later came back negative. I also told my NP about the constant burning in my gut after I would eat anything. She prescribed me an antacid, which I only took for a month. She then referred me to a GI doctor.

When I went to the GI appointment I was still very much in denial and wasn’t ready to face what ever was really wrong. The doctor wanted to do a colonoscopy before doing anything else. I was mentally not ready for that. After that one appointment, I never went back.

I tried to continue being on a strict no gluten or dairy diet. I gave up on it because I just seemed to get worse. I lived on crackers because it seemed to be the only thing that didn’t cause me pain. I also took imodium every other day to be able to have a real meal or be able to go somewhere.

By the end of the year, I desperately wanted help, but I wanted to be treated naturally. I found functional medicine doctor in Terrytown, NY and made the appointment. We traveled hours away to see this doctor at the beginning of January 2016. While there she did labs and spent two hours with us. She wanted me to go back on a strict no gluten, dairy, sugar, corn, or soy diet. I also left with a ton of supplements.

The test results from the doctor visit in Terrytown showed there was inflammation present along with a ton of vitamin and mineral deficiencies. This doctor could not officially diagnose me, but she did encourage me to do so. At this point, I was stubborn and not ready

I finally gave in and decided I needed to find a new GI doctor in May of 2016. The doctor we were referred to was a God send. He could see how weak and frail I was and he did not want to put me through a colonoscopy. Instead, he ordered a CT scan.

June 24, 2016, I had the CT Scan. I went home and waited for the call to confirm what I already knew in my spirit. When I got the call, I was alone, laying on the couch, praying. I was completely at peace. The person on the phone told me the results. She said the results showed signs of Crohns Disease. I didn’t even shed a tear. It was a relief to finally have it confirmed. I needed this diagnosis so I could get help and get my life back. I had already accepted the outcome before I even knew. I was ready to face it head on.

Part Three: Deciding Treatment

Next step was meeting with the doctor to discuss treatment. I was pleasantly surprised that the doctor wanted to try a pill option first which was called Pentasa. If I remember correctly, it required me to take it several times a day. He also prescribed Budesonide to take along with it. After one dose of Pantasa, my body didn’t react well. My whole body felt weird. I was told to stop taking it and to just continue with the budesonide until my appointment that was less then two weeks away.. We would then have to discuss other options.

At the appointment, it was up to me what I wanted to do. I choose Remicade infusions as my treatment. I was already familiar with it and knew other people that had success with it. My doctor also put me on prednisone because the budesone wasn’t cutting it. By the time it was approved by our insurance, we already knew that my husbands employer was going to be switching our insurance plan. The new insurance started Oct 1st. I had to wait for it to be approved all over again. As soon as I got word it was approved and called to make an appointment, they were booked till the middle of November.

That five months of waiting was tough in some ways, but I’m grateful it was put off till November. Not only were we in the process of buying a house that summer, but my papa went into the hospital at the end of July and went home to be with the Lord at the end of August. In September, my brother got married and a few days later we closed on our house and moved. Then I unpacked our lives and we had a small housewarming party in October. Finally, life calmed down a bit and my first treatment was in November.

I didn’t enjoy being on prednisone for those 5 month, but to be honest I couldn’t have gotten through that season of life with out it. Being on it, my gut didn’t hurt anymore, I was eating better, and it felt great to have energy again. In fact, I had so much energy, I was barely sleeping at all. I took full advantage of it. One night, I had so much energy, that I was up all night packing until my husband woke up to go to work. That was the first and only time I’ve greeted him in the morning with a smile and chipper “good morning!”. LOL

Part Four: Life On Remicade

I will never forget the day I had my first infusion. I was so nervous, but at the same time I was anxious to feel better and couldn’t wait. Being the first time in a new place there is always a lot of uncertainty, but this was next level. I remember once I got in my room, the tears were falling and I just wanted to run. My husband was always so good to gently remind me, I tried everything else. This was the right thing to do.

One the IV was in my arm and I was hooked up, I calmed down. We were very impressed with the whole experience. The nurses were so caring and gentle. Every one had their own little room with a reclining chair and TV. There was also free WIFI, beverages, and crackers. They also offered blankets and pillows which was great with the cold fluid going into your body. The infusion lasted two hours.

It didn’t take long for Remicade to start giving me relief. After the first dose, I felt a difference. Unfortunately, after the second dose of Remicade, I had Shingles brake out on my face. It was a long healing process and I wasn’t able to get another Remicade treatment for eight weeks, which means I missed the four week loading dose. When the Shingles broke out, I was tapering off Prednisone. I was put back on a higher dose of prenisone during my duration of Shingles. It did help my Crohn’s symptoms to stay at bay during that time, so I was able to eat well.

Once I got back on a normal eight week schedule with Remicade. I found that it was wearing off between five and six weeks. When I talked to my GI about it, he switched me to every six weeks. That made a huge difference in the way I felt between treatments. During the last week before treatment, I was careful about eating raw veggies or other foods that might be more aggravating just as a precaution. Other than that I was symptom free between treatments. I gained all my weight back and you would never know I had Crohn’s.

In March of 2017, I started getting iron infusions once a week for 10 weeks. By summer, I was feeling really great. I was able to put all the pain and suffering behind me. I was enjoying foods I thought I would never eat again. I was able to do things like eat out and go blueberry picking. Stack fire wood and can salsa. I looked forward to family gathering and holidays, instead of dreading them. Everything felt like a gift. I thought it was smooth sailing from here, until my world came crashing down again in May of 2018. I had a stroke on May 10, 2018. (You can read the entire story here.) It was the beginning of seeing all the progress I had made completely stripped away and I became even worse than before I was diagnosed with Crohn’s.

Part Five: A Choice That Changed It All

After the stroke, it was unclear what caused it to happen. I was concerned that Remicade could of been the reason. I made a very bad choice that summer. I threw my health away. After a stroke, you should not be allowed to make big life altering decisions.

I did not have the mind capacity to make a logical choice when presented with the option to try Entyvio or go back on Remicade. I made the decision to switch. At the time of the appointment in July when I made that decision, I was not symptomatic. By the time August rolled around I starting feeling things start to flare up. I tried CBD oil in hopes that it would be enough to not have to start Entyvio, but it wasn’t enough.

So, I started Entyvio thinking that it would work immediately just like Remicade did. I quickly found out that not all medications work the same. Some take longer to kick in and start working. It was then I knew I made a big mistake. It was on this mediation that I had my first abdominal bleed which led me to the hospital with barely a pulse. After that I begged my doctor to let me go back on Remicade. At the end of December, I went for my first dose. My body quickly remembered what to do with it. I finally got some relief.

My symptoms were gone and I was getting back on track. In March, my Remicade treatments were only lasting 4 weeks. That wasn’t unusual because that is what happened when I started Remicade the first time around. So, I knew all I need to do was notify my doctor and have him switch me to every six weeks instead. The answer I got back was very unexpected. That was the last straw for me with that doctor. I decided to switch to someone else. Once I was officially switched to the new doctor, they called with an appointment date, but it was to far out. So, I emailed the doctor and explained the situation. He got me in the next day, but what happened next surprised me.

He did not agree to switch my dosing to every six weeks. He wanted blood work done to see if I had developed the most dreaded thing you don’t want to hear when you have IBD. He wanted to test for antibodies. I was sure that I just needed my infusions more often, just like last time. When I found out the results that I did indeed develop antibodies to the medication that literally gave me my life back, I quickly went into denial. I didn’t want to believe it and I held out hope for so long that it was just a mistake. I was on blood thinners because of the stroke, so I blamed that. I thought that being on the blood thinners must of made the test a false positive. Every doctor I asked about it was sure that blood thinners couldn’t interact with a test like that.

I had to move on and choose a different medication yet again. So, next I went with Stelara. My doctor assured me that it would start working quickly. Well, that may be true for others, but that is not what happened for me. I felt no difference at all. I was beginning to think that the bloodthinners I was on had to be the reason why nothing was working. Instead things were just getting worse.

I explain in my stroke story that I switch my blood thinners from coumadin to plavix. After that switch, I saw a glimmer of hope. My inflammation markers started to go down. I was still very sick every day, but the numbers showed that Stelara was working. Then things took a turn for the worst in November.

I was being to have more pain than usual a couple weeks before Thanksgiving. I was still determined to have a normal Thanksgiving that year after missing out on so much all year long. I took imodium the day of Thanksgiving, but it didn’t work as it usually always did. After eating I did not feel well at all. I still had the rest of the day to get through and some how I did. Once I was home that night, the pain really kicked it and I started vomiting. Long story short, I ended up taking an abulance ride to the hospital. At the hospital, I had a CT scan which revealed I had a partial bowel blockage. In Part 6, I talk about how and why that happened.

After just one night at the hospital that let me go home, but it was not even a week later and I was back at the hospital again.

What happens next, in part six, is the most real and raw part of the story.

**Warning: lots of “potty talk” and near death experience that could be triggering in the next part.

Part Six: From Bad to Worse

I thought I was on the med. I had gotten off so easy with only one night in the hospital. I was was on prednisone and I felt like it was helping with the pain. I talked to my doctor over the phone and he got the ball rolling on starting a new medication. I thought within a week I would be starting Ciimzia, but a few days later I started bleeding. Part 6 of my Crohn’s Story is going to be a little different then the rest. The next part has been copy and pasted from what I wrote the week these events happened. . . .It is very real and raw. It a part of my story I’ve never told anyone. The closest people to me have never even heard this part. I am glad that even as hard as it was, I wrote this down when it was fresh in my mind. It’s long and very detailed. Warning: Some parts may be hard to read if you don’t like “potty talk”. There is really no way to sugar coat Crohns Disease. LOL

I had four days that I felt really good after staying in the hospital one night. I came home feeling like I got off so easy and I was so grateful.

I called first thing Monday morning to talk to my GI about getting the ball rolling on Cimzia. In my head, I thought two days was enough time to get this done and at the most I’d be waiting till Friday to get my first dose.

When I called Wednesday, it had just been submitted to insurance at 11:30am. I had expected that to be done Monday and it wasn’t. I knew then it was going to be at least Monday or even Tuesday before this got done and I was in the office for my first dose.

I was feeling pretty good. I accomplished all of my normal house work and rested plenty. I was eating soup, pudding, applesauce, and sipping Ensure. I was at the most having 2 BMs and my pain was very minimal.

Wednesday, I cleaned a bathroom, showered and got dressed all cute and festive because I felt up to at least putting the lights on the tree. Chris got home and I was ready to get the lights up. As soon as we got done, I instantly felt like I needed to sit and be done.

I was going to eat and take prednisone, but I felt my bowls moving and before you know it I was on the toilet. When it came out, I looked. I said “uh oh”. I instantly thought this can’t be happening. No this isn’t happening. It can’t be. There was blood… I wasn’t going to worry. I was going to fight this with everything in me.

I started bleeding. It’s a battle to not let myself think the worst. The enemy instantly thinks he has his foothold. My body starts going into a tail spin as I imagine what is going on inside of me. I keep trying to shut them down. Fighting for peace, but I can’t find it.

I have enough sense about me to know what I need to do… I ask the church to pray and I go to battle myself. I lay on the couch in the living room. I put on the song In His Presence by… I soak it in. I let his presence fall heavy on me. Suddenly, peace comes over me.I start to feel a difference.

My husband joins me as he kneels beside the couch. He lays his hands on me and we pray together as the song plays again. I continue to feel something happening with in my body. Something good! I let my husband doss off to sleep as I continued to pray and rest. At 1am, we went to bed. I had the most restful peaceful sleep.

13 hours had past with no bleeding. I truly thought I was in the clear. When I got up the next morning, I even felt pretty good, but then my bowls started to move. I was so hopeful it was going to come out clear. Unfortunately, there was blood. I was very lightheaded.

I called Christopher in case I passed out, he would know. Then I called my GI office. This was about 10:30am Thursday. My message for my dr was that I had started bleeding last night but didn’t have anymore until 13 hours later. I’m not sure what I should do….

I expected I would hear from him around the lunch hour. I thought he would see it as an urgent matter. The lunch hour came and went and I thought may be he would have time sometime during the afternoon sense obviously he must of been so busy he worked through lunch and didn’t see my message

The time kept creeping by and no call. I hadn’t had any more bleeding so there was no reason to go to the hospital. Chris had come home about 11:30 that morning because we wanted to be ready to do what ever the doctor said to do. We just laid on the couch and watched Christmas movies all afternoon.

It got to be after 5 o’clock but I was still hopeful he would call even after hours. How could he ignore something so serious? By 6 o’clock, I decided I would have to be my own dr. I was going to take prednisone every 8 hours instead of 12 because that seemed to be keeping the bleeding under control.

So I took it at 6pm. It wasn’t long after that, I started feeling really bad. My heart was pounding really hard and I was having more abdominal pain. I seriously believed they were side effects of the prednisone.

As the hours continued, I checked my bp/pulse at resting and every time I got up to pee. It was normal every time. We went up to bed around mid night. I should of know then that something wasn’t right. I felt very light headed going up stairs. I laid in bed for 3 hours in so much pain. It was like really intense gas pain. It felt like there was a lot of air moving around.

3am hit. I hadn’t peed in 3+ hours and I was thinking we should go to the hospital. I sat up and was very lightheaded. Chris was awake and we were trying to get me to the toilet. I had him wheel me in a computer chair as far as the chair would allow. Then got up and got myself on the toilet as fast as I could. He held me up and the blood came out and I started to fade…

I couldn’t speak. His voice sounded like I was under water. I felt myself get very hot and clammy. At one point, I went completely limp. Then I peed a lot. I started to come back. Chris was pressuring me for answers. When the lightheadedness started to subside and my hearing became normal, I was able to speak. I wanted the Ambulance. I needed the rescue team again. Twice in one week. This time more serious than the last.

I wiped myself up and Chris helped me up. I got myself quickly to the bed. He went to call 911. I laid there completely at peace that help was on the way and this would be easier than trying to get down stairs by myself and to the truck. I did that last time and I barely had a pulse when I got to the hospital. I knew I could get some life back into me during the ambulance ride. Immediate attention is what I needed.

They arrived and once again I wanted to sell our house. Why in the world I thought buying a house with steep stairs was a good idea, I will never understand. They were unable to use their chair lift because of the way the top of our stairs is constructed.

They decided to strap me to a chair and carry me down. I trusted them to get me down. I had no reservations about that, but was afraid of how I knew I would feel sitting up. It was not going to be a quick 30 seconds to get me down. It would be several minutes. I quickly realized that as long as I layer my head back and They put me in more of a reclined position, my head and heart felt fine. I was able to instruct them to keep my head back and they were able to do just that.

They lifted me gracefully off that chair and on to the gerny right in our living room. Wrapped me up and wheeled me out… again for the second time in less than a week..

The man that was taking care of me in the ambulance was great. I was feeling well enough to answer all of his questions. He put an IV in and started giving me fluids. I was so grateful when we arrived at the hospital that he stayed and did all the talking so I didn’t have to explain a thing. I needed that because Chris hadn’t arrived yet.

Part Seven: The Turnaround

So many questions were answered during the second hospital stay. I truly believe it had to come to this to get answers, real help, and find true healing.

The first person that came in, to talk to me about my case, gave me life changing news. The team of doctors working on my case took my med list and found out the migraine medicine, I have had to take 3 times in the last month, can cause bowel obstructions. It was prescribed to me well over a year ago and I’ve always just suffered through migraines because I avoid popping pills as much as possible. After my last appointment with my neurologist, she said it wasn’t good for my brain to just suffer through it and I needed to catch them when they first start. With the weather change, I was having them frequently. So, this explains why the little improvement that was seen with my inflammation markers skyrocketed again.

Next, I started to have what felt like sinus pressure my second night and then pain in my neck and head just like when the stroke happened. Tylenol didn’t take it away. I couldn’t sleep. I was so nervous about my head and the nurses could only do so much in the middle of the night. I told my nurse I thought we should get neurology involved.

At that point, t was the forth day off the blood thinner because of the bleeding. The trauma I had gone through was a lot of stress on my brain. This was a recipe for another stroke. I didn’t understand why no one was coming to check me out the next day. I wasn’t just a Crohn’s patient, I was in stroke recovery. When I’ve had pain like that in the past and have gone to the ER, I am immediately checked out. There’s no signing in and sitting in the waiting room for hours to wait my turn. So, it was confusing to me that no one was coming.

The enemy was really trying to get a foothold here. When I finally snapped out of it . . .I knew lack of sleep never helps and can trigger the pain. My body was under a lot of stress which can, again, trigger the pain. I also had my head tilted back for a few hours when I arrived at the hospital. They assured me in the morning someone from neurology was coming, they just didn’t know when.

Waiting to see the neurologist was so worth it! The enemy tried to induce fear and turmoil, BUT God turned my pain into good news and answered prayer! The doctor told us that with the type of stroke I had, treatment is usually 6-12 months on Coumadin and then keeping an eye on the clot there after. As long as there is no change, it should never be a concern. I had been on blood thinners well over 12 months and my recent scans determined the clot was stable.

This is what I had longed for! Prayed for! To be off of blood thinners that had been causing so many issues with my gut health. Finally, I talked to a neurologist that believes me. I have been so over doctors telling me that there is no data to back that up.

This doctor was a God send whom I never would have met if I didn’t go through another bleed. The bleed was stopped in its tracks much faster than when I had one a year prior. A miracle, in itself, is that I did NOT need blood OR iron infusions! I have been anemic for years. I always need iron when I go to the hospital or when routine checks of my levels are done. I’m always needing to go for more iron infusions. I lost blood, but my levels held at 8.4! That is still low, but they don’t give blood or iron until at a 7. That in itself is shocking to me considering my poor on going diet month after month and having the blood loss. 🙌🏼

During that hospital stay, I was released from the blood thinners (by GI) and migraine medication. I was put on prednisone, which helped tremendously with the gut pain. I was able to consume more food and add new things into my diet. It held me over until my new medication was approved.

Part Eight: Completing The Puzzle

In the hospital, I had the best doctor and I knew I need to switch to her as my GI. She listened to me and truly cared. She fought for me when the other doctors wanted me to go home. I definitely feel like she is a better fit than all of the other doctors I have had. So, this is another good thing that came from that hospital stay.

When I was still in the hospital, my doctor and I discussed treatment options. I choose Cizmia, but after a two week battle between the insurance company and the doctors office, it was decided by the insurance company that they wanted me to try Humira first. If that failed, then they would approve Cizmia.

At first that really made me angry. Our insurance company had never done anything like this before. In the past, what ever was recommended was approved quickly with out questions. What I realized later, is that it was God intervening and setting me on the right path.

I did not like the idea of having to inject myself ever two weeks. That’s why I had choosen all of the other options. My husband so graciously offered to be the one to do the injections. On December 17th 2019, I had my humira training and first dose, which was administered by my husband. I could feel a difference just two days after the first dose. That is when I knew this was it, This was the one that would work and give me my life back.

We had the best Christmas that year. Enjoying it to the fullest being able to eat and not be in any pain. By January 1st, I was eating raw vegetables again. On January 16, I was weighed and found out I had gained 9 lbs since December 12. On that day I also scheduled my very first colonoscopy for February 19. The results of that colonoscopy revealed that I was already in remission. Less than three months after having a bowel blockage, I was officially in remission. After 18 months of flaring, barely eating anything, loosing 35 lbs, and basically being bed ridden, I was in remission. God redeemed it all.

Part 9: The Night I Blacked Out

We had a little scare Sarurday evening. . .well, actually it was a big scare for my husband…At one point he thought he lost me.

At about 8:30 Satuday evening (Februsry 27, 2021, I started to have severe lower abdominal pain.

I’m going to get a little candid here. There is no way to sugar coat this with out loosing some of the story. So…here I was on the toilet. My hands had become numb. From there I don’t remember much of what happened. I know at some point I kicked off my pants and underwear which makes the story even more interesting.

According to my husband, he said I asked for the waste can, spit a couple of times, and went into what looked like a seizer. At first, my eyes went behind my head and then they came back as I was shaking on the toilet. He was holding me up so I didn’t fall over and hurt myself. When I stopped shaking, he propped me up on a laundry basket and called 911. At this point, I started to come out of it and I gave him a wierd look, jumped off the toilet and started yelling with out words. He was trying to talk to me and I wouldn’t respond. I eventually grabbed him and gave him a hug. After the loving embrace he sat my bare butt on a chair out side the bathroom.

That is where I was sitting when CAVAC arrived. I’m really glad I don’t remember this part because even after all I have been through that is humiliating. The lady paremetic helped Christopher get my underwear and pants on. After this, apparently, I was giving them all a hard time about getting in the ambulance. Chris said he was telling me I had to go to the hospital to get checked out because I was having a seizer. Then I would say, What? A seizer? No! Then I would ask again and we were stuck in this endless cycle because I would forget.

The only thing I remember is when I saw a familiar face standing in front of me telling me I was going to be ok. (Thank you, Mike) When I got into the ambulance, I still wasn’t completely coherent. I don’t remember any questions being asked as they normally do. I know I must of been calm and still because an IV was inserted. It felt like it only took five minutes to arrive at the hospital.

Another IV was administered. because they don’t like to use the one from the ambulance. At least that is what I was told once. I do know in severe cases that like to have two different IV sites to use as well. Fluids were given for a few hours and labs were drawn. Meanwhile, my husbands mom came with him to drop off my purse so I had my phone. They decided to stay at his sister and brother in laws house instead of driving all the way back to our house. Now that I had my phone, I was able to talk to him and let him know what was going on. The part I only vagely remember was the doctor using my phone to talk to him and get the details of what happened. I only remember her handing the phone back to me. I don’t remember any dialog. At some point after this I went for a CT scan of my head and abdomin.

It was a little before midnight when the doctor came with the results of the CT scan. I was shocked to find out I wasn’t in Crohns remission anymore. The CT scan revealed a small flare in my lower abdomen, which explained the severe pain. I felt so confused by this. I said something to the doctor about being in remission and that is when she told me that SHE has Crohn’s, too! She assured me that this is normal and it’s just how Crohn’s works. It’s a rollar coaster. You think your off it and then you just end up getting back on.

The good news is, I didn’t have to suffer. I had no clue anything was off with my gut. other than feeling more tired than usual and experiencing more frequent headaches the last three weeks, I have been eating great with no complications. I am very grateful I was able to get my head checked and to find out everything looks good. For those that don’t remember, I still have a partial, but stable blood clot. I haven’t been on any blood thinnners since November of 2019. The last time I had my head checked was September of 2019. It was good to get it check especially with all the migraines I have been having.

At 12:08am, I was givien a steriod and released to go home with a perscription for prednisone. They had me wait in the waiting room,which was pretty empty for a Saturday evening. I believe we arrived home a little after 1am. It was the shortest experience I have ever had in the ER. It wasn’t very busy at all so I was able to receive quick care.

The technical term for my diagnosis, and the reason I “blacked out”, is called “Vasovagal Syncope”. It also says on the discharge papers, ‘exasperation of Crohns Disease”. Yup, that is a great way to descripe it. Crohns, you exasperate me!

Chris said I was acting really scared and upset before I got in the ambulance, but all I can recall is being at peace the entire time I was in the hospital. It didn’t even bother me that I was alone. I found out after that our church family had us covered and that is the power of prayer.

Living on this earth as a child of God doesn’t make us exempt from pain, but God is there in our pain. I had this writen down in my phone. I have no idea if its a note of something someone else said of if it’s my own thought, but I think it’s worth sharing and quite possibily the point of sharing all this. This was not a fun thing to go through, but I am grateful I found out what was going on now instead of suffering. I’m grateful the doctor in the ER could relate to what was happening to me and was a source of comfort. I’m grateful it was a short visit and not an over night visit. I’m grateful for a husband that works well under pressure.

When we arrived home, I insisted on taking a shower and I need time to flush out the contrast from the CT scan anyway. We slept in and watched our church at home. Got ready after the service ended and drove to church for the annual meeting. We missed the catered meal celebrating 40 years in our current buliding. It was also the last meal in our current buliding, before we move to our new one, but we made it for the meeting, at least. I honestly think it helped us both to get out and be able to talk to people of that support system. It was also great to hear all the good that was still able to be done in our church during 2020. Things may of not haappened how we planned or envisioned, but God still moved and prepared us for what is to come.

Part 10: ER Visit and Lab Work Experience

Today was my last dose of prednisone.It’s been a rollercoaster of emotions the last few days. I don’t want to go back to the way I feel with out it.

I actually thought I was feeling better than ever before having to go on prednisone, but as usual it proves me wrong. It always takes a round of prednisone to make me realize the state of “good” I think I’m in, is in fact not good. Just because I’m eating and my gut is functioning properly, does not mean one is “good”.

The warning signs were there, but I didn’t think anything of it until I was headed to the ER. I fought it and tried to do everything I could to avoid going to the ER. After 12 hours of suffering through the pain, I had to give in.

~Fear Go, Holy Spirit Come~

This time I didn’t have to go by ambulance. We arrived and what a relief it was that the ER wasn’t busy. I didn’t even have to sit in the waiting room. Everything was going as routine until I heard “COVID test”. I said, “why is that necessary?” One of them said, “You have to have one in case your admitted. . . And you probably will be going upstairs.” With this look on my face: and NO mask on my face (because they had given me something to drink for ct scan)… I was thinking…Women, you don’t know my God. That’s not happening.

~Fear Go, Holy Spirit Come~

So I jumped through their hoops because I was in to much pain to make a scene. I could tell by the look in my husbands eyes he was reprimanding me to behave. It was a good hour or longer before I had my scan done. During the waiting time, they sent us to the waiting room. They were waiting on some lab results before ct scan could be done.

After the scan, the dr came in and said he took a look at the imaging himself and to him it looked like there was an inflamed area, but no blockage or anything serious like that. We would wait for the official results before we made any final decisions, but he said I wouldn’t have to be admitted unless I wanted, too. When the final results came back, we decided on a dose of steroids and he prescribed 30mg of prednisone. Then I was released.

This experience showed me that although they are short staffed, there are people that still care and provide quality care. The hospital was actually quite empty and quiet. I didn’t have to have my mask on the entire time. I had it off more than on and I clearly never wear one because I had it upside down most of the evening. we’ll just blame that on the pain. I was asked if I was jabbed which wasn’t a surprise. No question or comment was made after asked, but I’m sure it was filed. . . I hid under the radar for as long as I could. This is the reason why I was so hesitant to go to begin with.

It was an all around pleasant experience, unlike the experience I had at the local lab last week(December 8, 2021). I had to get routine labs done for an appt coming up. Before we left the house, I asked my husband to get me a disposable mask out of his service truck. He said he was all out and forgot to get another box at work. Alright, I’ll just have to get one at the drs office.

So, I get there and before walking through the door to come into the building, I look through the glass door and there is no box of masks sitting there. .. like there always use to be before COVID. Ok, maybe the lab has some. So I zip up my coat as far as it would go and it conveniently covers my nose and mouth. So I go in and go over to the lab door, look through the window. No box of masks and no one sitting at the desk. So I go in and let myself breath because at this point my glasses are all fogged up and I can’t see. I wait a couple minutes and I hear someone coming down the hall so I put my coat over my face. I immediately ask, do you have a face mask I can put on? I don’t have one with me. The person says no we don’t and you have to wear one. Ok …So if I wear my coat like this can I still get my labs done or do I have to leave and come back? The person says something about the sign on the door. Ok I’ll just wear my coat like this or do you think the drs office may have one? The person throws their arms up like I don’t know, sits down and starts typing at the computer. The person did not give me a straight answer. There was no yes or no answer. So I just stood there. They didn’t tell me to leave. I thought they were logging into the computer to put me in the system for my labs. A couple minutes went by and the other staff member came in the room. The person that basically treated me like scum, said to the other person, “do you have a face mask for this women. She refuses to leave”.I was thinking…Umm you didn’t tell me to leave. There was no refusal. I asked if I had to leave. The person didn’t respond. I figured the coat over my face was sufficient. Thicker and less breathable than any mask. So what do ya know… the person says… sure sweetie, I’ll go get one. Somehow a face mask magically appeared. while the person was getting the face diaper, the rude person told me to wait in the hall until I got the mask. Thankfully the other staff member did the lab work and was extremely kind and respectful.

Yup, I know this could of been avoided if I brought a mask with me, but I don’t own any. I got rid of them a long time ago. If I wasn’t stuck in this sick care system, I’d never have to deal with this ridiculousness. Yes, I realize these people have to enforce the rules, but I think there is a better way to go about it. Was he not allowed to tell me …Sorry ma’am, you’ll have to leave and come back with a mask? Is this not acceptable protocol? I mean I guess I learned my lesson to come with a mask, but I thought they would have them available like they always have. I could of just walked in there bare faced and not asked at all.

It’s infuriating that Im stuck in this system. I can’t believe I have to deal with this. The thing that gets me the most is this was a small office. I was the only patient in the place with two staff members. Basically, no mask = no service. Yet in the hospital they didn’t enforce it. No one ever said to put my mask on or you have to leave the ER. We even saw staff that put their masks down when they were away from patients. In the waiting room people had it off. Again I had it off more than it was on. I only had it on when directly talking to staff . In the beginning when I was drinking the stuff before the scan, I had it off even when they were in the room. I guess I just needed to see for myself how it really is out there.

So there you go. Take it how you want. This is just my experience. It’s a good thing I live in a bubble because I think we would have had to move a long time ago. I could not do this every day. You all put up with way more than I ever could.