In April, I started noticing this rash on my chest- the most awkward spot in the world to have a rash. I couldn’t itch it in public without soliciting some odd looks. I went to my family doctor (willingly! She is absolutely amazing!) and she prescribed me some ointment and that helped it for a little bit. Then in May, I noticed this bump on my leg; now I really thought it was a bruise- it was raised and it had a brownish appearance to it. I didn’t think too much of it because lets be honest, I am a klutz. I started to notice a few more of these “bruises” and they were painful too. I showed my mom these “bruises” and she thought they were odd as well. We went back to my doctor and explained what was going on- she thought I had a Vitamin K deficiency-which is rare in adults. It was confirmed by a blood test and she suggested to eat more foods that were high in Vitamin K rather than taking a supplement. I said, “Okay, I will spend a month eating romaine lettuce and kale chips. Fine, I can do this.” I did that, and my legs seemed to be getting worse. (Odd and frightening. It looked as if someone beat my legs with a baseball bat. It was embarrassing!)
On top of all of this, my energy level kept decreasing and I found myself saying I was not hungry or things were tasting odd. I thought I did too much in June and I just needed a break. I had scheduled time off at the end of July so in my mind, I kept thinking ‘I just need to get to the end of July- I can do this’ ((Which in retrospect, was not a good mentality))
I knew something was really wrong but I didn’t want to believe it when the week leading up to the 10th of July, I had absolutely no energy, little patiences and very little appetite. That Friday, I was going on a date with a guy I had been chatting with. He suggested we go to an outdoor bar by my house since it was such a beautiful evening. He was going to pick me up and my nerves were THROUGH THE ROOF! We got to the bar and we got our drinks and I was a mess ( I later apologized to him for my actions that evening because it was unlike me)- I was cold, I ate probably 2 bites of my dinner ( which is totally unlike me ) and I kept running to the bathroom. (TMI but necessary for the point of this story.) I didn’t understand what was making my stomach so upset. Beer, food or nerves or the combination of all three.
The date ended and I was still not feeling well. The next day I was going to attempt to try Stand Up Paddleboarding with my personal trainer. I absolutely loved it but I was exhausted. I slept the whole weekend to try to recuperate for the week ahead. In my mind, I kept repeating-just get to July 29th – which is when my vacation started. I ended up staying home on Wednesday because of sheer exhaustion, a fever that came and went and I didn’t go to yoga. (I never miss my Wednesday night yoga at Seabreeze. ) I got myself together to go to work on Thursday because I had court (for my job not personally) and it was a rough day. I came home that night and knew I was staying home on Friday. My parents were concerned about me because my fever (it peaked at 103!) was not going away. Friday morning, mama called the family doctor and she had an opening at 11am and we were so thankful. Mama told me she was praying all morning before she called that the doctor would have an opening today.
We got to the doctor and we told her everything that was going on; mama was concerned I caught something from SUPing; the fevers worried me a lot and those ‘bruises’ still weren’t going away. The doctor took my temperature (97 degrees) and my pulse (107 or something like that ); she was concerned. She sent me for some blood tests on my way home to be rushed. 17 vials later ( no joke! ), we went home and I fell asleep. I didn’t eat too much because of my appetite wasn’t good. I was awoken by my phone ringing and it was my doctor- All I heard was “….you need to get to the hospital….” And I started to cry. My mom came in and started to talk to the doctor. After crying, I pulled myself together and started gathering things for the hospital. My mom came back in and we cried again; we then got our selves together and started getting ready for the hospital.
I grabbed Penelope (my stuffed flamingo who comes with me to all my doctors appointments and hospital stays!), the book I was reading, my wallet, my legal documents (Last Will and Testament, Living Will, Advanced Health Care Directive and Health Proxy) ( I know I am 27 and I have these documents, it’s a bit overwhelming to think about but I am happy to have these so my parents do have to make these terrible decisions) a blanket, and my car charger and home charger for my phone. My parents and I got ready in record time and we were off to the hospital which was an hour away.
We made record time to the hospital; It was a Friday night at 5 pm in July and I live at the “Shore” in New Jersey. The roads we were taking are notorious for being congested any time of the year but even more so in July. The doctor texted me that she had spoken to the emergency room doctor and that I would need antibiotics immediately because the doctor thought I had a infection in my heart (echocarditis) This made me even more nervous, overwhelmed and scared.
We got to the emergency room and we were met with a cheerful intake nurse. Every question she asked me, I was met with resistance- “what is your medical history? Well, I had an appendectomy…. No no that’s not right. What are your asking then?” That conversation got me upset and what even got me more upset was the waiting room was filled to capacity. I told the nurse and everyone I met with that my doctor had spoken to the emergency room doctor and I needed antibiotics immediately- no one seemed to care. After waiting for what seemed like an hour, another cheerful nurse came out and called the remaining patients names to be taken into the back. She yelled out the name and stated what room to go to. I didn’t care that she was rude, I was happy to be seen (sort of ).
The emergency room bay they put me in was scary looking. I’m pretty sure it was a make shift operating/ procedure room normally but on a busy night, it was used as a holding bay for not emergent patients.
After I got changed into the roomy gown, the nurse came in to take blood samples. I told the nurse that I had blood taken 4 hours earlier and if they were about to run the same tests, call my doctor. She said it was hospital policy. Fine, another 17 vials gone. We played the waiting game. I was hooked up to monitors to monitor my heart ( and had an EKG done), pulse and blood pressure. By now it was almost 830 pm and a doctor hasn’t come in. I know I not high priority but I wouldn’t come to the hospital for a splinter. The doctor finally came in, talked to my parents and I for a few minutes and stated she needed to wait for the blood tests and the pregnancy test (negative--- I could have told you that one!) to come back. Fine, waiting waiting waiting. When the tests did come back, the emergency room doctor didn’t have an answer- she did not know if the antibiotics would work and she was not eager to give them to me. I did not understand this- something is wrong, my blood tests are indicating there is an infection somewhere within me but you don’t want to treat it?! I have insurance, you’ll get paid.
It was 1 am when I basically begged for the antibiotics and the doctor gave it to me unwillingly. My parents and I tried to fall asleep after that debacle. My parents are troopers- they sat in uncomfortable chairs, trying to sleep while sharing a small blanket. My dad would stand by the door and lean on the sink, half asleep. (I honestly don’t know what I would do without my parents! They are superheroes!!) Around 4 am we were startled awake by a doctor who I aptly named “Frat boy” because that’s what he looked like- he said that they would admit me later that day (Saturday) and they are just waiting for a bed for me. This was not the ‘get away ‘ I was planning on but maybe I will start to feel better.
The day nurses were much friendlier and I was a little more at ease about the situation. I thought they would keep the weekend end and I would be fine.
Daddy got us breakfast and my appetite was apparently elusive and the bagel did not look appetizing yet the bottle of Gatorade did. Later in the day, the nice nurse came to tell me that my room was ready. After going through a maze of doors and elevators, we came to the fourth floor- Oncology. This was the only room that was open. I did not mind this room because of two reasons- I got the bed by the window and the nurses were awesome.
The first day up in the room was a blur, needless to say. Lots of new faces and introductions; A lot of explaining my symptoms and lots of fluids. I had gone to the bathroom and I heard this loud crying come from inside the room. I knew it wasn’t my moms so when I came out of the bathroom, I saw I finally had a roommate. She looked a lot younger than me. I wondered what was wrong!
Actually the whole 11 days I spent in that room was a blur. I had so many different doctors come and visit me (at this hospital, I had a team of doctors- hospitalist, surgeon, infectious disease, gastro, ob/gyn((my own stopped by))), I had a whole slew of tests done (EKG’s, Echo-cardiogram, CT’s, MRE’s, Ultrasounds, Colonoscopy) within those 11 days. Each day ran into the next, my parents were always there for moral support. I couldn’t really pinpoint a time in the hospital where I felt better but what I do know is when I didn’t feel better.
It was probably the first or second day in the room and this mean old infectious disease doctor came in and stated that I had an abscess in my stomach that needed to be drained. Now I was totally turned off by this idea without any further explanation but I let the man speak. He started to describe the procedure( which as he stated, they need to cut my stomach open and drain the abscess while I am awake) and for some ungodly reason, I DID NOT at that point run out of the room, screaming and demanding a second opinion. I just squeezed Penelope underneath the blankets. After he left, I said to my parents and started to cry, I can’t do that- that is insane. I cannot be awake for that- that is cruel and unusual treatment. I was already overwhelmed and at my breaking point before this Infectious disease doctor came in and afterwards, I was done- my anxiety was through the roof and I wanted to leave. I didn’t care that I was sick, I wanted to get out…QUICKLY. My parents reassured me nothing would be done without my consent and tried to calm me down. I fell asleep for awhile only to be reawaken by another doctor checking in on me.
I was on a clear liquids diet most of the week. I think I survived on Jello, Lemon Ice and a little bit of chicken broth. Oh and Gatorade. If I was having a test that day, they would not let me eat or drink at all- which ended up being most of the week. By Saturday when my gastro doctors came in, I flat out asked him if I could have some plain macaroni. In his nonchalant mannerism, he said sure, we will not be doing any more tests on you so go for it, eat as many carbs as you want. I further questioned him Bagels? Pasta? Bread? Yes! Yes! Yes! Thank goodness. I wanted a burger NOW! That weekend I ate like I didn’t eat in a week, which I didn’t.
One of my favorite surprises came later in the week, on Friday. I had been texting with my co-workers all week and two of them ended up surprising me! I remember thinking ‘ who the heck is wearing high heels in the hospital’ because I hear the distinct click click clack on the tile floor. When my two co-workers appeared with flowers, it brought the biggest smile to my face. What a nice surprise after a crazy week.
This hospital I was at, had a concierge service. Basically it gave you a list of items that they can order for you, services you can receive ( mani/ pedi, massage, haircut) and they can help you with flights and hotel room reservations. Mama thought it was good idea that a mani/pedi was in order for me to help ease the pain of being in the hospital for a week at that point. She set up the appointment for later in the afternoon on Saturday. Luckily I was not booked for any tests that day.
Saturday rolled around and my parents wanted to try to cheer me up so we got official permission to head down to the gift shop to “shop”. Picture me in a hospital gown 4 sizes too big, my IV pole next to me and me in a very large wheel chair window shopping in the hospital’s gift shop. It was a sight to see but it got me out of the room for a few minutes. The gift shop actually had pretty jewelry and handbags. Shortly after they brought me back to the room, the nail lady came and she was absolutely amazing. Now I never had a mani/pedi before (yes I know I am 27 but why pay for it when you can do it your self?!) and it was amazing. She was so sweet and we had the best conversation NOT about the hospital or the reason why I was there. How refreshing! My nails looked fabulous and I felt amazing.
That Sunday my aunt and her boyfriend were going to visit us for breakfast. They came with goodies in hand, mostly food for my parents. I was so happy to see them and equally as happy to share breakfast with them. It was wonderful to see them but not under these conditions. I felt pretty good that day so I asked the boy I went on a date with 2 weeks earlier if he wanted to come visit later that day. We had been texting randomly since I was in the hospital. He politely declined because he had to go to Connecticut for work that evening. I was partially bummed and partially okay with it because all the excitement of my shopping trip, my mani/pedi and my special visitors- I was exhausted.
I was released on Monday the 27th (THANK GOD!) after 11 days. My doctors did their rounds and some of them, suggested we seek a second opinion about what was wrong with me ( the doctors never exactly pinpointed what was wrong but gave us we think it might be…. Answers). The hospital wanted me to leave in a wheel chair (HECK NO!) so I walked myself out of the hospital but not before praying with my sweet older woman roommate Christine. (The young girl got to go home the next day and I got the best roommate possible) She was so sweet and such a pleasant roommate! We wished her well and I basically ran out of the hospital. While mama and I were waiting for daddy to get the car, the nasty emergency room doctor passed us and I am not ashamed to say, but I gave her a dirty look after she passed by.
So after 11 days in the hospital what did they find?
A very inflamed intestine
A bad bacterial infection
Possibly crohn’s disease
The last one, I knew. Last summer, I was diagnosed with a mild case of it. Now I didn’t believe the doctor because I didn’t exhibit any of the symptoms- at all. I had one bad day and I couldn’t justify him saying that. THEN two other doctors told me that I DID NOT have Crohn’s Disease. Color me confused at that point. Our plan was to get a second opinion to finally see what is really going on in me.
I said to my mom last year, I want to know what is going on with my stomach because I have had problems for about 5 years but never this severe. I guess I finally got what I wished for. (Lucky me!)
Since the hospital we went to get a second opinion, Read about it HERE which did confirm the suspicion of Crohns Disease. They did not say how severe it was but from the route of treatment he suggested, I am thinking its moderate to severe. Its scary to think about and scary to read about the side effects of all these drugs but I need to get better.
I have an appointment with the gastro doctor from the hospital to talk about my treatment and options. I am nervous and anxious to see what he has to say. I pray for the best news I can get at this point.
XX Gabrielle
