By now I had been home from the hospital for several days. I am on some strong pain meds because of the spots in my right lung. Normally, you wouldn’t feel these. However, the largest one was sitting on the back wall of my lung. Because of this, every time I breathed there was a very sharp pain that would shoot up my back. So, the medicine that they had me on definitely helped.
Unfortunately, there are many side-effects to being on any medicine. The medicine made me so sleepy. I was so worn out from whatever was attacking my body that even on the meds I would just fall asleep. Most of my days were spent doing just that! Now, most people are apparently wired and hyper with Prednisone. However, just like everything that had been happening, I was just the opposite. I felt awful. I would rather not take Prednisone. EVER. Unfortunately, that was not an option.
Towards the end of October, I had an appointment with the UNC Pulmonary Department. I met with my new doctor. We spent a good two hours just talking about everything that had happened and what she thought was going on. Towards the end of the appointment, we decided that I would begin tapering down on the Prednisone. We also scheduled another CT scan to see if the masses were shrinking. The doctors also had a lot of blood drawn that day. We were looking for any signs of an autoimmune disease present in my body that might show up in blood work.
Long Days, Longer Nights
The next few weeks were rough. Something started happening. I am not sure if I would call it the beginning of depression but perhaps. The days were long and the nights were even longer. Because of my health problems, I had to take a leave from work. Therefore, I was at home all the time. Because of my medicine, I was not allowed to drive.
Being home all day gets very lonesome. I felt invisible. People on the outside are living their lives, and I was stuck inside practically bedridden. I hardly talked to anyone. Everyone was living their lives. On good days, which were few and far between, I was able to go out. Sundays were my favorite day of the week. I was able to go to church and see people. However, I still felt invisible.
When dealing with an autoimmune disease, a lot of the aspects are invisible. My lung masses were invisible. My mass in my abdomen was invisible. My joint pain is invisible. My migraines are mostly invisible. My pain on my entire right side was invisible. However, that doesn’t mean that it isn’t real. This has been probably the hardest part of my journey.
People couldn’t see what I was going through. And sometimes it felt like I was completely alone. No one understood that while I seemed to look “fine” or “not sick” on the outside, my insides were falling apart.
Text, Instant Message, Call, Write. Just Do Something!
From someone who struggles with feeling alone because of illness, I would encourage you that if you know someone who is battling something, whether it be cancer, a chronic illness, or just a hard time in their life, to take a minute out of your day to contact them. You may never know the impact that just a few words will make on them. Fighting a disease is exhausting. But fighting an invisible disease when you feel alone is overwhelming and discouraging. I know it means the world to me when someone takes the time to intentionally stop and see how I’m doing.
Don’t just say “Hey, How are you doing?” and continue with “oh, that’s great!” No, that’s ridiculous. Most likely, you weren’t really listening to what was just said. It would be better to say nothing at all. But please don’t ignore us either because you don’t want to bother us. Most times you will not be bothering us. I promise. However, we don’t want your pity either. We just want someone who cares enough to listen for a few minutes. Ask us about a quick update or what we got to do for the past couple of days, or if there is any specific way you could pray for us. Those who stop and unselfishly ask or talk, mean the world to people like me. You are a bright spot of encouragement in our sometimes very dark days.
So, genuinely listen. Break the mold! Please, be different.
Often times, as a society we only do things that better ourselves. But how wrong and selfish that is. Especially as Christians, we need to be caring for one another. Bearing each other’s burdens. Maybe one day, this might be you. I hope not! But it might. And one day you will want people to stop and genuinely care for you when you feel alone and invisible in this world.
Night time has become my least favorite part of the day. While everyone else gets to go to sleep, I am often up into late or early hours of the morning. Some days, I don’t fall asleep until 4 AM. This makes for some very depressing moments. No one is up at that hour and you definitely don’t want to bother anyone then. However, my greatest comfort has not been found in people.
My greatest comfort has been the Comforter Himself.
Christ has been the only Person through this entire thing that has been with me every second of every day. A lot of the doctors have said that I am so calm or peaceful. They have said that most people they see going through things like this would be angry. The only answer I can give them is that I have Christ. I have a hope in Him that can’t be found anywhere else.
Now, as I began to taper down on the Prednisone something unexpected happened. Early one Sunday morning, I started to feel like something was off. I had been up all night tossing and turning. That part was not much different than any other night. However, this time I was getting some weird pains in my abdomen. At first, I thought maybe the chicken salad I had the night before was making me sick. So, at 4 AM, I went to the bathroom. I thought maybe I could throw up or something and that I would feel better.
I usually didn’t bring my phone with me everywhere, but with needing to always have a way to contact my parents if something happened, I took it with me to the bathroom. Now, what I am about to say could be gross to some people. However, this is what happened, and I am sharing my journey. So, skip if you want.
Anyways, I ended up having a GI bleed. Let me just start by saying this was the scariest thing that has ever happened. If you have never lost a lot of blood at one time, then I will tell you that it is like having the life literally drained right out of you. The room started to go black. And I had two thoughts as I started falling to the ground.
I can’t hit my head. I am going to die.
I remember lying on the floor of our tiny bathroom. I was shaking. I got really hot and then really cold in a matter of seconds. I remember being completely scared. I thought I was going to die right then. The pain was almost unbearable, and I was alone. Thankfully, I had my phone so I was able to call my parents in the other room.
I don’t remember much after that. I ended up going to the ER. Obviously, for good reason. They took me back immediately and they checked my blood count. I remember them saying that a normal person’s Hemoglobin should be anywhere from 12-16. Well, I was at an 8 and then I dropped to a 6. The doctors became very alarmed, and blood transfusion was ordered immediately.
Now, being the “interesting” patient that I am, my body decided to do something different here too. As the first bag of blood was going into my body, I started to have a reaction. My throat started to close up, and I couldn’t breathe. After just losing so much blood, I was very weak and now I couldn’t breathe. So, the transfusion was stopped and they gave me Benadryl.
I was admitted and had to have at least three bags of blood to get my levels back up. After the blood transfusions, I can’t explain how I suddenly felt alive again. The Bible says, the life is in the blood. How true this is! Unfortunately, I was still bleeding. So, on Monday, I had the last test that the GI department had to offer. I got to swallow a camera that took pictures of my intestines to see if they could find where the bleeding was coming from.
Unfortunately, the test results came with an all too familiar word: non-diagnostic. They couldn’t find anything wrong. This made absolutely no sense, but the bleeding seemed to have finally stopped, so I was able to go home. This was great news because it was the day before Thanksgiving. My stay at home didn’t last very long, though. After two short weeks I found myself back at the ER! But more about that detour later.