Don't Hog Your Journey !!!

“Don’t hog your journey…it isn’t yours".

Think of the lives you could touch if you just shared your journey.

This was said to a woman who had battled breast cancer, and by God's grace, miraculously lived to tell about it. The words of this quote have echoed through my mind ever since I heard them almost 3 months ago.  The statement not only made me think about my own journey, but it also challenged me to take the anxiety and worry out of what others thought and become transparent about the journey that I have been so blessed to be on.

I have never enjoyed writing, but let’s just be honest… I do love talking. So let me apologize right now for any grammatical mistakes and spelling errors that you may find in this blog. I believe with everything in me that God uses all things for his Glory. He makes no mistakes, and His plan is perfect. My journey has been a bumpy ride to say the least, but I don’t want to hog it anymore. I want people to know about the faithful God I serve, and how he has proven his faithfulness to me above and beyond anything that I could have ever imagined.

My blog name “Running with Remicade” was picked by a wonderful man. A man that I have been privileged to date for almost 8 months now. When I decided to start this blog, he fully supported the idea. He also thought that it would be cool to not only write about the struggles I have faced through my disease but also the victories that I have achieved along the way through one of my biggest passions, running!!!

Let me explain a little further, I have an auto immune disease. I was diagnosed in the summer of 2006 with a disease known as ulcerative colitis. It started out with a semi-low level of severity, and it has progressively gotten worse. For those of you who don’t know what an auto immune disease is, let me explain. Normal people have immune systems that help fight bacteria or a bug that they may come into contact with. My body, instead of helping me, fights against me. The same cells that help you fight a cold will tear ulcers throughout my gastro-intestinal tract. There are days where I lose a lot of blood, experience high levels of pain and discomfort, pass out from loss of blood, and many other crazy symptoms. These symptoms began as an annoyance in my daily routine and have since become extremely debilitating.

In November 2009, after numerous blood transfusions and a referral to a doctor at the University of Virginia, I met an amazing woman by the name of Doctor Finke. She is an incredible doctor. She met with my family for hours to discuss my auto-immune disease and the severity of the situation. For the first time in 4 years, a doctor actually acknowledged how sick I really was. Let me just take a second and say that over the last 4 years, I had doctors here in Lynchburg telling me things like, “it’s no big deal”, “you passing out 10 times a day is all in your head, you may want to consider a psyc evaluation”, and “we can't figure out why you keep needing blood transfusions”.  Shockingly enough, as I sat there talking through everything I had been through the last few months and years, it was clear to Dr. Finke that this disease was real and was NOT just in my head. My body was not functioning normally and something was really wrong. About 45 minutes into my consultation with Doctor Finke, she ordered a series of tests to get a better grasp of my sickness. She accidentally left the door open, and the words that I heard her say rocked my world: “I need you to come down here now, this girl is really sick”.

When she uttered those words, it felt like the floor fell out from underneath me. I sat there in shock wondering, “What does this mean?” Doctors have been telling for months that it’s all in my head. Did I do something wrong? should I have come sooner? I sat in silence as we waited for her to come back. When she walked back in the room I couldn’t even make eye contact with her.  Don’t ask me why, but I felt like making eye contact with her would, in a sense, acknowledge that my disease was a reality. When Dr. Finke returned to the consultation room, she said, “I have asked some other doctors to come down and explain your options”. Options? What the heck does that mean? I have never been so thankful to have my mom and one of my dearest friends, Nicole, sitting in that room with me.  It was at that moment that I pretty much zoned out and didn't really hear a word the doctor was saying. I thank God that my mom and Nicole each had a note pad and wrote everything down.

Dr. Finke broke it down to three different options, and I had to choose one as my method of treatment. The first option was to inject myself 3-6 times each day, but this method was not proven to work and was not known to fix the problem. It would serve as a temporary band aid on the situation.  The second option was to enter myself into a study that was not FDA approved. The study had no guarantee that I would be receiving the study drug or a placebo. There was also a risk of getting even more ill before I would start to feel any better.  The third and final option was to be treated with Remicade. Remicade is a form of drugs that is mixed with chemotherapy. It is extremely intense and is administered through an IV. I would have to begin with numerous rounds of the Remicade treatment, and then I would slowly be tapered off to a treatment schedule approximately every 4-8 weeks.

After Dr. Finke rattled off all that medical jargon, I looked at everyone and asked to be excused for a minute.  Up to this point in the consultation, I had held it together, but I was about to lose it and needed to get out. I excused myself, went to the bathroom, and completely lost it. As I sat in the bathroom for about 5-10 minutes, I was very confused and really didn’t know what to think or how to react. I was so angry and frustrated with the doctors that I had seen for the past 4 years. I was mad, because I felt like this shouldn’t be happening to me, like it was their fault. After I had my melt down, I thought, “Well, I could stay here forever…after all I do spend a lot of time in the bathroom on a daily basis, and a few more minutes won’t kill me.”  :) JUST KIDDING. But seriously, I knew that I needed to complete the consultation and get a game plan in place. I knew it was time to face this thing head on. It was time to get it together and get myself as healthy as possible. As I returned to the consultation room, I climbed back up on those horribly uncomfortable doctor’s office beds, and I looked at everyone and said, “So what do we do?” I asked Dr. Finke, “If you were in my shoes, what would you do?” Dr. Finke replied, “Well, because of how sick you are and we want to get you better as quickly as possible, I think WE should start Remicade.” “I don’t think the injections will work.” “And even if you want to do the injections and your body ends up rejecting them, then Remicade is the next step.” “So let's just start big.”  Because of my past and all the issues that I have had with IV’s, Doctor Finke told me that I was going to need a power port, a permanent IV that is just under the skin and connects to a vein that goes directly into my heart. My first step was going to be surgery to get the port in, and then Remicade treatments could begin.

This is where my journey began. There were a lot of things that led up to that point and a lot to talk about after it, but this is how it all began. I am so thankful for the medical staff at UVA and for my personal doctors. One of my favorite recollections of that day and one of the quotes that has stuck with me through it all was when Dr. Finke said, “We are going to do this…” The word WE has not, and probably will not, ever mean as much to me as it did that day. Because, it meant that I wasn’t going to be in it alone. It meant that WE (Dr. Finke and the rest of my personal medical team at UVA) were going to get through this as a family. I now consider UVA to be my home away from home. Her words also reminded me that WE (the Lord and I) could get through this even if all those people weren’t in the picture.

You must understand something about me. I live life knowing that at any moment God could heal me. His Word says he is Jehovah Raffah, which means ULTIMATE HEALER. I could wake up tomorrow and never have to deal with this again. Unfortunately, today I wasn’t healed, but that is not because He enjoys seeing me struggle or in pain. It is because he finds me most use-able with ulcerative colitis, with a port, and with Remicade running through my veins. It is where I find myself closest to Him. He is my hope and He is MY HEALER. Without this disease, I know without a shadow of a doubt that He would put other situations in my life to use me to my fullest potential. I can't tell you how many times I have asked God to use me to further His kingdom.

Make no mistake about it. If you ask God to help you trust him more or to show you patience, He is going to throw more things at you that will cause you to either become more patient and trusting or to continue living in your current spiritual state. I don’t know about you, but I have prayed, more than anything, for trust, patience, and my struggle with worry. As a result, I have to expect to get some big things thrown at me, and this is Big, sometimes bigger than I would like to deal with. Sometimes I want to blame doctors, but they are not the ones to blame. The trials are what the Lord is using to grow my trust in Him and to challenge my level of worry. I have to believe that He knows the limit of what I can handle and will not give me an ounce more.

My disease is not curable at this point, and Remicade will be a part of my life until it stops working or until the Lord sees fit. So, like I said earlier, the Lord has brought me to a point where I don’t want to hog my journey any more. I want to share the up’s and down’s with anyone who is willing to read about it. I am so thankful for this medicine even though it doesn’t always make me feel the greatest physically. It’s a great spiritual feeling to know that God is using me. I know that he challenging me and growing me every day to become the woman of God that He wants me to be. I am so thankful to be sharing this journey with you and I hope that you are encouraged in some way.

God bless all of you and know that I pray that whoever reads this blog is challenged to know God on a deeper level and to trust Him more!!!!

~Ellie