Here's My Full Story

So, here is my story:

Back in May, I was feeling lethargic and tired a lot. I was feeling stressed from the end of the semester and a lot of travel. I recognize that I gained a lot of weight over the past year and was ready to make a change. The last week of May I went and joined Planet Fitness even. But, on May 31^st, my life would change. Some could say for the better. But for me, having lived it I can tell you it definitely is not.

May 31^st I decided to make tacos. I was finally getting settled into my new summer housing and decided that I would make one of my favorite meals. I had everything I needed. The meat, cheese, tortillas, lettuce, tomatoes, salsa, and sour cream. I was so excited to finally have a kitchen since I had been living in a hotel for the past year. I had dinner and about 4 hours later I was in the oddest pain of my life. It felt like my upper abdomen was on fire. It started near my breast bone and went over to the right side of my ribs and just felt like everything was on fire. It felt like I was going to throw up, but I didn’t and couldn’t. I was nauseous for the rest of the evening. It was horrible.

I was scheduled to meet with a doctor for a general check-up when this happened, and the appointment was for the next day. I went and mentioned my problems from the night before and mentioned how sick I had been feeling. The doctor ordered me to get my blood drawn. I did that. Had a panic attack over it because I hated needles (safe to say I’m doing much better now). But, freaked out when the lady did but managed okay.

A few days later the results came back as I had really high liver enzymes. My doctor told me she thought I was showing signs of hepatitis. This was crazy to me and I had no idea what was going on. I started freaking out (as I normally do, of course). She told me she wanted me to get an abdominal ultrasound to make sure my liver was functioning okay while also checking my gallbladder, right kidney, and pancreas.

Few days later went and had the scan. The scan came back as everything was fine minus the fact my liver was huge. With this I was officially diagnosed with non-alcoholic fatty liver disease. As a doctor later on would tell me it basically means my liver is enlarged and working too hard and storing way too much fat and should be about half the size of where it is now. So, after this ultrasound, my original doctor told me to go and see a GI specialist.

A few days later I finally went and met with the GI specialist. I should point out that during this time I was nauseous literally all the time. I was feeling sick and without motivation to do anything because it made me feel 10 times worse when I would move or walk or do anything. I was so sick all the time. I basically stopped eating and would only eat certain things that didn’t make my stomach upset.

At the GI appointment, I remember meeting the doctor and telling her all of my problems. I remember her listening to my words and not putting them off and trying to help me figure out what was wrong. She ordered more blood to be drawn to check off any type of bacteria, infection, or parasite. She also had me do a poop sample (sorry, we are going to get real here ha). Once that was done she had me come back a week later to go over the results. When she came in that following week she said “I was hoping to see you feeling better. All of your results came back negative, now we have to see what is going on from a possible autoimmune, autoinflammatory, or some other type of thing that is going on”. She ordered more blood to be drawn this time looking for inflammation markers that could lead to hopefully more information about my bowels. The blood work came back as having nothing wrong from Chron’s to colitis. I didn’t have ulcers from what the blood work showed. My skin autoimmune disease was flaring up which caused the inflammation markers to come up positive, but we ruled everything else out.

After that appointment my doctor put me on the books for a CT scan, an upper endoscopy, and a colonoscopy with the hopes of canceling the latter. I was personally not looking forward to the colonoscopy. I scheduled everything and called it a day.

By this point, we have made it to July! During this time I had lost around 20 pounds and was still not eating and when I did eat it was very minimal. I continued this until about September.

The CT scan was terrifying for me. I have PTSD and this was a large trigger for me. I got into the office and they called me back and told me I had to drink contrast. For one, back in 2009 when I had my first major surgery they made me drink contrast and I have to say, shout out to the medical advances of the world because it tastes SO much better now. After I drank the contrast I was brought to a nurses station to get the IV inserted.

Throughout this whole thing almost every time I would go to a doctor’s office the same question would get asked: are you pregnant? Are you sureeeee you’re not pregnant? As for someone going through this, constantly being in pain, and not being believed is really hard. Nurses were the worst at asking this question too.

When I got the IV inserted the nurse questioned me three times to confirm I was not pregnant since I had put the wrong date of my last period wrong on the form. I was very adamant in saying no I wasn’t pregnant, because I wasn’t and couldn’t be. Then she got me ready to get the IV in. She had said that she overheard me when I had come in having my panic attack and how I had mentioned I had PTSD from my car accident. The nurse then proceeded to tell me about her tragic accident in detail while placing the IV in my arm. For those who do not know, this is not the correct way to respond with someone who has mentioned they have PTSD. Anyway, she placed the IV and I was set to go. They got me into the CT room and had me lay down on the machine. They did a few scans without the dye and then they came back in to get me ready for the dye. I started freaking out. I won’t lie. I was scared. It was all too familiar even though it had been 5 years. The nurses who were in the room were phenomenal and helped me so much to calm down and regain my composure. The placed the dye in and I was good to go. The scan in total took less than 30 minutes.. maybe even less than 20. Once I was done with the scan I was sent on home.

The results came back that I had some attenuation of material that resembled dense bile in my gallbladder, the fatty liver which we already knew, and surprisingly, a functional left ovarian cyst. This was worrisome for me considering my history of ovarian cysts.

I made an appointment with my OBGYN and decided to make sure all of that was okay. I booked the 7:30 am appointment and remember her looking at me with 4 heads as I questioned the cyst. She told me it was functional, so it wasn’t anything to actually worry about. But how was I supposed to know that, ya know? She scheduled me another ultrasound. That all came back clear, no cysts or anything like that.

I also had to follow up with my dermatologist. I was on Humira starting in January 2018 until June 2018 when I had heard the original fear of having hepatitis. My derm told me to stop it immediately and then schedule an appointment to figure out our next steps. I had that follow up appointment. I remember telling her all of my symptoms and everything I was going through, and she looked at me and said your doctor is going to find out its your gallbladder and you’re going to have it removed and you’ll be able to go back on the drug in a few months. I was relieved someone finally gave me more information about what could be wrong! I should also mention that my OBGYN also thought it was my gallbladder when I had gone in for my appointment earlier in the month.

So, by now I am officially down around 25-30 pounds. The summer is starting to dwindle down and I am getting ready for my second year as a grad student. Right before I start I finally have my endoscopy.

I get there. They set me up and hook me up. I go to sleep and wham bam I’m done and heading home. The endoscopy showed that I had mild gastritis and GERD. So, they basically put me on two heart burn medications and called it a day. I was finally doing better. Not in as much pain and was managing what I could. I was finally able to eat sandwiches again which was huge. After the endoscopy I felt like I was finally in the clear. We canceled my colonoscopy and I was a free woman. Until….

A few weeks later I started having bloody stool. TMI I know but hey, you’re reading a blog all about my personal experience and well, I’m ready to tell the world about what I experienced so! Had this happening a few times a week. Got concerned and so I went to my GP. He did a rectal exam and it was the most violating feeling of my life. He was concerned and had me reschedule my colonoscopy. I was not too thrilled about that. Did what the doctor ordered though. Put it on the books and was ready to go.

In between then and the procedure things were getting better. I was officially down 30 pounds and I was able to eat more which was a huge benefit. I wasn’t having any skin flares that were not controllable. Things were doing okay. I was also able to go to the gym and I started working out 3-4 times a week which was exciting too.

It was time for the colonoscopy. The prep was the worst part and I wish it had come in any other flavor but grape. Bleh. I still can’t use the cup I had put it all in because it still makes me gag at the sight of it. The prep lasted and I survived it all. I won’t go into too many details. The following day I went in for the procedure. I remember the nurse who was getting all my info asked if I had my appendix, gallbladder, and tonsils. I remember saying I didn’t have the appendix and I shouldn’t have the gallbladder either. She laughed and said she had gone through similar testing and it took them 2 years to realize it was her gallbladder. At that point I hoped and prayed this would not last that long. I went back for the procedure. I remember being more awake for this one than for the endoscopy and it was over quickly, and I was home asleep shortly after.

Results of that came back clean nothing to worry about which was a huge relief. I decided I would not be getting another one of those done in a while if I could avoid it.

Fast forward throughout the rest of the fall semester. I had limited appointments and really needed just follow-up things taken care of. But other than that, I was doing okay. I was eating things that I wanted and tolerating them. I was a happy camper. I was officially down 35 pounds since this all started back in May. I have dropped down 2 pant sizes and I’m feeling good.

New Year’s Eve was the day things got interesting. In the morning I made my protein shake: vanilla powder, with vanilla almond milk, a banana, and a mango. It was delicious (kind of). I didn’t eat for the rest of the day. I decided to take a nap. I was starting to have similar lethargy to what happened back in May but didn’t really think anything of it. Around 5 pm I started having the burning sensation of heart burn. I was confused considering I hadn’t had anything to eat so I just assumed it was because of that. I was so tired though I kept sleeping. Around 9 I finally got up and tried to force myself to eat something. My boyfriend made me popcorn chicken and I forced myself to eat some. It was good and once I had some it somewhat settled my stomach. Afterwards, we ate some chips on the couch while watching the New Year’s Eve festivities. Around an hour after eating however, I started having a different type of pain around my upper right abdomen. It was an ache mixed with a stabbing pain that would happen every few minutes. I had decided that if at midnight I was still having issues we were going to go to the ER to figure out what was wrong. Sure enough, midnight rolls around, the ball drops and we head out to the ER.

They checked me in right away and right into triage. Got my history and all my symptoms. Then they got blood drawn. I had asked what they were drawing for, just out of curiosity. The nurse said the basics and a pregnancy test. I was blunt and said it was not possible for me to be so and she laughed and said, “Oh honey, I was also not pregnant when I found out I was pregnant with my second when I came into the ER”. Needless to say, I’ve really had it with these nurses assuming I’m just pregnant. After the blood draw we went back to the waiting room until they could get me a room. We got a room and I waited for what was to happen next.

About an hour after getting in a nurse came in to check vitals. Then about 20 minutes later the doctor came in. The doctor listened to my whole story of everything I just mentioned above, but the condensed version into about 3-5 minutes. She pressed around and I winced and pointed out where it hurt. She was fairly certain she knew what it was, but she wanted to be sure. She left the room and about an hour later another doctor came in. He said, “I’m the doctor they send in when they need to double check things, I’m also the one who finds the places that hurt, so I apologize”. He came over and started pressing on my stomach and sure enough I almost screamed when he hit the area around my gallbladder. He left and the other doctor returned saying they wanted to get an abdominal ultrasound, but they thought it was my gallbladder.

All I could think was: FINALLY. Someone finally listened to me and took me seriously. Maybe it was because I was seeing someone new who hadn’t been hearing my story since June or maybe just because they listened to all of the parts of my history. Like the fact that all of the women in my family have had theirs removed. Or the fact that I can pinpoint where the pain is. Who knows? I knew I finally had answers though, and that is what mattered most.

The ultrasound nurse came in. She was very sweet. She did the scan and then on her way out the door I had asked what it was. She laughed and said “oh honey, it is most definitely your gallbladder. You’ll have that sucker removed and feel so much better”. I remember laying back down and just breathing a sigh of relief, that again someone finally listened, and my body finally had proof.

The doctor returned and told me I had gallstones. She mentioned that it was not serious enough that I needed to have surgery right away which was a good thing. I was able to go home and rest and figure everything else out the following day at least. She gave me some Percocet for the pain and called it a day. I headed back to my boyfriend’s house where I would figure out the plan of attack from then on.

So, here we are to today. Today is February, 5^th, 2019. All of this started on June 1^st, 2018. I will finally have my bad gallbladder removed on February 19^th, 2019 and I could not be happier or more excited about this diagnosis. I am so ready to have it out. As you can tell it has been an uphill battle. It has been stressful and tiring. It has been kind of awful at points. But I have made it to this point. The next few weeks before surgery are going to be a bit of an obstacle and that is actually the purpose of me writing this. I want to track how I am doing daily. The doctor wants me to go on a liver prep diet which consists of eating only fruits, veggies, and 1 protein shake a day. This is literally almost insane. But because of my liver and how enlarged it is they are afraid that if I don’t lose the liver weight they will have to open me up for surgery rather than do it laparoscopically which will complicate things even further. So, this is going to be a place for me to share my journey through this diet and through the preparation for this surgery.

If you got to this point, first off, congrats! You did it! Secondly, I want to say I couldn’t have made it through all of this without the help of my mom, my boyfriend, his family, and my friends. Without you guys I would not have been able to stay so positive through this all.

So without further ado. . . Here we go.