Saying Good Bye to 2010!!!!

So I did it. I sucked it up, amidst the nausea and ran! I was glad I did. I think for me, and from what most runners have said, if you run consistently and have to take a break, the first run back is so much more of a mental battle than a physical one.  I haven’t run since treatment about 12 days ago and I was both mentally and physically ready. 

Dante and I have a set of good friends, Danny and Shari, who are moving to Houston today and I had to say good bye last night. I suck at goodbyes.  So before I headed over to help pack, cry, and say goodbye, I hit the treadmill to burn off some stress and sadness. There is something about it that causes my mind to just chill. Those who know me know that my wheels are always turning. So I think running, as odd as it sounds, almost allows me to keep up with my thoughts or vice versa.  My thoughts almost slow down. I am not sure how to describe it but I love it.  When I finished I was so glad I went out and did it. It definitely wasn’t as easy as it normally is but I got 3 ½ in so that is ok for the first day back. Hopefully I will get some running in this weekend while we are in DC. Mike and Cindy live in an awesome area and there are tons of fun places to run. I am crossing my fingers and my toes J.

After my run, like I said, I had to go say good bye to some our closest friends. For some reason I feel like Good Byes get harder as I get older or maybe just since I have gotten sicker. It almost forces you to realize that your life is not your own.  I am not trying to be a “Debbie downer” ;), but I have really struggled with missing my family.  I guess saying good bye to Danny and Shari was the tip of the iceberg. When I write I want to be completely real, because I have been a whole ball of emotions sometimes I try to just stick to the happy stuff. 

Christmas away from home is always hard for me. I had an amazing time with Dante I wouldn’t have wanted to be anywhere else, but now more than ever, like I said in my last post, I cherish my family. Every email, every card, and every moment I get with my grandparents, parents, siblings, nephew, and close friends is precious and valuable.

Dante and I talk all the time about love languages and mine is by far quality time.  Over time I feel like it has evolved into a realization and appreciation for my families love and support.  You have those light bulb moments where you get a glimpse of what this is all about, what we are really here for and who matters most. Dante and I have been reading a book together called “Love at Last Sight”, by Kerry and Chris Shook. The book challenges you to make your closest relationships closer. Whether it be a spouse, boyfriend, brother, sister, grandparent, friend, it doesn’t matter the whole book talks about the value of your time, and how much it means to be there for someone. Really really be there. The book talks about how we live in a “social networking society”, and while the book doesn’t bash these forms of communication, it challenges you to not allow these to take the place of quality time with people.  I can honestly say, maybe because my love language is quality time, the most memorable times of 2010 are the times that I was really there, present for the big moments, there for the happenings in life. Moments like, my little brother’s graduation; my sister’s first baby shower and last baby shower and then right after my nephew was born; Easter with my nana; my mom and grandma visiting me; the adventures of Nikki and Ellie. There are so many of them… slumber parties with the 104 Chelsea girls; coffee dates with Lauren; being able to experience Renee’s pregnancy start to finish; the birth of Peyton Grace; double dates with Patsy and Jake; road trips with Danny and Shari; Thanksgiving with my whole family; Christmas with Dante’s family; running with Melissa and Jenny in the freedom 424: my girls weekends: and all the monumental moments with Dante. 2010 has been an amazing year, and even though I had to end this year with a sad good bye, my personal challenge for 2011 is to be really “there”, to spend more quality time with the ones that I love. These moments are irreplaceable, and they are the things that I hold on to and remember when I am going through my toughest days battling UC. I have said from the beginning that I have to be thankful for this disease, it has forced me to think about the tough stuff, sometimes the things that people miss, or the things people try to skip over, without this disease I don’t think life would feel quite so special, and time with loved ones wouldn’t be as important. Life is so much more than the here and now.  The time we have here on earth is already decided.  I have been so convicted to make every moment count, live the life I’m  given to the fullest, not missing anything, and appreciating all of the special moments, good or bad that God gives me on a daily basis. I am excited to be able to bring in 2011 with my family, Dante, and our special family friends Mike and Cindy, and look forward to blogging about all the fun events that took place over the weekend J

  Please have an amazing New Years Eve, and New Years Day!!! Also know that you are loved and prayed for!!! I’m so thankful for the love and support that I have felt through this blog.

God Bless you and Happy New Year J

Christmas Week Recap :)

So it has been a whirlwind of a week, and I apologize that it has taken me this long to post.  This whole blogging thing is still new to me.  I start writing a post get distracted and then forget I even started one. I wish I could blame my forgetfulness on the Remicade but for some reason I haven’t found that side effect in my research.

Christmas in New Jersey was awesome. It was so great to spend time with Dante’s family. They are so much fun!!!  They looooveee to sleep. Which is so funny because the busy bee in the house I grew up in started buzzing at about 630 am. Vacation or not they are up with bells on ready to start the day. Dante’s family on the other hand, have mastered the art of sleeping in.  J The whole house is quiet until about 1130 am. They stay up late playing games, and they sleep late as well. It was a perfect gift especially after Remicade, it really wiped me out this time. I am still struggling with nausea and loss of appetite. Who wants to eat when they are nauseous??  If you know any tricks.. please please share J

On Thursday night Dante surprised me with a special date.  He made a reservation at the Melting Pot, I was clueless as usual J We were just shopping away, and I thought that we were doing dinner with his mom and sisters but at about 5:45 he looked at me while shopping, and asked if I was hungry.  He said he had made a reservation for six at a surprise place. So we started walking in the direction of the Melting Pot.  He said he had called that morning to check on their gluten free options and to his surprise, and mine, they have a totally g-free menu!!!!  He never ceases to amaze me J He is sooooo good at surprises, me on the other hand… I STINK at them. He knew all his Christmas presents except for one long before it was time to open them, HAHA!!!  I don’t know what my deal is.  I get so excited to give presents. I will do one of two things, give the gift weeks before the date it is intended for or I am the one helping them open the wrapped gift, telling them what it is before it even is out of the package, HAHA.  One of the many things that make me Ellie I guessJ

We got back on Sunday, and the drive back was probably one of the highlights of the Holiday weekend. We love road trips.  We typically take our time and find fun things along the way.  It is seriously the best way to travel, ZERO stress, and no agenda. I think that is one of the few pros to this disease.  It has forced me to slow down and CHILL OUT. Please understand I am totally Type A.  I love my day timer and I love to have a plan. It is funny because while my disease seems to be more manageable (if that is even possible) with a consistent schedule, it is probably the most inconsistent thing I have ever had to deal with. One minute I feel great, and then the next minute I feel like I was hit by a Mack truck.  I have had to learn to be a little less type A and allow for the “hiccups”, as I like to call them.  Dante (lol), PRAISE the LORD for allowing opposites to attract, because he never has an agenda and just takes everything in stride.  I am so thankful for that!!!!

I didn’t get to be with my family this Christmas, and I missed them.  I missed them so much. On Christmas eve I called my Grandma’s house where my mom’s side usually all gather after our prospective Christmas services.  I promised myself I was going to keep it together, so I called and my grandma answered the phone. I LOST IT. Same thing happened on Christmas morning when I called other grandma’s house were my dad’s family usually congregates. You never really realize how special your family is or how special all those family traditions are until you aren’t there for them. I was so welcomed by Dante’s family though.  I was even included on one of their long standing traditions. It is called “the death kitty” if I can figure out how to post pics. I will attach one, but it is a self-defense mechanism that his aunt has gotten all the girls in the family and this Christmas was my turn!!! It is basically the face of a cat made in really hard plastic, you put your fingers through the eyes of the cats face, and it acts as a set of pointy knuckles J HAHA... I have to figure out how to attach a pic because it is pretty cool and definitely a great weapon if needed.  We also had the opportunity to see his grandparents on Saturday night.  Of course his Pop Pop had some of my favorite ice cream waiting and popcorn ready to pop. It was such an awesome week and a wonderful Christmas.

I cannot believe that this year is almost over. We are going to spend the last holiday of 2010 in DC with some family friends and it will be so great to bring in the New Year with some of my family members and Dante ♥.

2010 has been an amazing year, and I am thankful for all the special events that have taken place this year. I am thankful for my wonderful family who love and support me no matter what; thankful for Dante and all the joy that he brings to my life; thankful for my doctors; thankful for Remicade; and SO thankful for God’s Grace and all of the trials he has walked through with me.

I hope you have an amazing New Years and a happy start to 2011!!!  

Almost out of the Fog!

⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-10

I got this verse from my older sister Megan. It was totally what I need at just the right time, so I decided to share it with all of you. J

Today is Tuesday, and I have another weekend of Remicade behind me. It was a rough weekend, but it is over, and I am hoping in the next couple of days, and into the start of the holiday, that I start getting back to 100% Ellie!!

It was so cool to see how the Lord has been able to use so much of “this” for His glory.  At treatment Friday I was able to tell the girls receiving their infusions about this blog and about what the Lord is doing in my life. In past treatments I haven’t ever really been able to talk with the other patients.  We all usually sleep through the infusion, but for some reason this treatment was different.  There have been so many times that I leave treatment feeling like no one “gets it”.  People expect me to rally back and be the normal Ellie. I wouldn’t want it any other way, however sometimes it is difficult, especially when it affects me the way that it does. The last seven days had been especially hard because I had to wait an extra week to get treatment so I was really low, and really not feeling well.

I beat myself up, when I don’t feel like myself.  It is hard because I don’t like to be what I call a “Debbie Downer”. Even though I was low, and despite the fact that I was receiving an increase in the amount of Remicade, this treatment was so encouraging. We all sat there talking about life, talking about how this drug/disease has affected each of our lives. We each had about 10-15 years between us so it was really cool to see where they each are at and how it is affecting them at 34 and 55. Suzanne, our nurse, said she was glad we were all talking.  She said it is a lot more beneficial for people that are experiencing similar types of treatment to talk through the different things we experience because of the medicine, or the different issues that we have struggled with because of our diseases. It was like our own little support group, haha!!  We all encouraged one another and it was so clear that while my treatment was a week late God was right on time. He had it all figured out. This verse, the one up top, couldn’t be truer. I was soooo weak going into treatment and even the weekend after my treatment, but I felt spiritually strong, knowing without doubt that the Lord had planted those women at the infusion center so that we could encourage one another and lift each other up throughout the struggles we deal with on a daily basis.

Patsy and I had a great “girls’ day” on Friday.  We talked the whole way there and the whole way back.  I am so thankful for her friendship.  She has been there for so many hospital visits and she also has taken me to numerous treatments. We have come to develop our own little traditions.  We start the day with Starbucks and end the day with Chipotle. I didn’t really get to eat my burrito bowl on Friday; I haven’t really had an appetite since my treatment. I think the increase made me a little sicker than normal, but I am slowly coming out of it.  Before you know it my blogs will start talking about all the fun running trails I am conquering.

This weekend Dante and I exchanged some Christmas gifts.  I think because I was feeling bad, he wanted to cheer me up a bit J.  Boy oh boy did he cheer me up!!!!   I got a set of pearl earrings from Tiffany’s. Girls, I am sure you can all agree that the pearls are amazing, but the little teal/green box with the perfectly tied white satin bow, is equally as exciting!!!! He did a great job!!!

Dante and I do this thing where we ask what the others roses and the thorns were for the day… week…. weekend… month, etc.  At any given moment you have to be ready to share your high (the rose), and your low (the thorn) for whatever time frame the other is looking for.  Well, the earrings were definitely my ROSE for the weekend, despite the thorn of feeling sick.

We are headed to New Jersey for Christmas to see his family, and we are so excited!! My parents will be coming in on Monday the 27, and Tuesday the 28^th on their way to see our family friends in DC and I am very excited about that as well. Every day I feel a little better, today my stomach is nauseous, but the headaches haven’t kicked in yet, PRAISE THE LORD!! One more day of work and we get some time off.  It will be so nice to just rest without having an agenda. Hopefully I will be able to start running here in the next couple of days!!

I hope you are all enjoying the holiday season, and getting all of your shopping done. While I don’t know who is all reading this blog, please know that you are prayed for.  I am thankful for the time that you took out of your day to read my posts. It truly means a lot and it has been such an amazing experience thus far.

God Bless,

Ellie

Treatment Week :)

“For God did not give you a spirit of fear, but of love, power and sound mind.”

                                                                                                -2 Timothy 1:7

I have been saying this verse over and over and over in my head.  I love verses like this because it is small but packs a big punch.  Like I said in my last blog one of my spiritual struggles is worry.  It is something that the Lord and I wrestle with on a daily basis. Yesterday Dr. Finke and I talked about a few different issues that I had been dealing with.  Her solution was to increase the amount of Remicade that I am receiving by 50%!! Her hope is that it will last longer, and make me feel better between treatments. Honestly, I wish that I could say I took the news like a champ, but I didn’t.  It freaked me out, and it made me think of all sorts of things.  Will more hair fall out?  Will I be sicker longer after the infusions? etc. etc.

I asked Dante last night how he would feel about me having no hair, and he said, “I think you would look hot with a G.I Jane cut”.  I didn’t agree, but at least it made me laugh. Something about the hair changing makes me sad, but like my mom always says, “this is only a season”. Sometimes I can talk myself into believing that and then other times I allow it to get the best of me. The week of treatment is always hard, I get really tired, everything seems to bother my stomach, and what we sometimes laugh about is that I cry at the drop of a hat. Sometimes it is truly something that a normal person would cry over and then other times I drop a cup of water on the floor and lose it, and it is in those times that we just have look at and laugh about, and chalk it up to the necessity of Remicade.  Sometimes I wonder, “is this me needing treatment or is this me turning into my mother”.  It is me needing treatment I PROMISE. J  Even with all this pain and the frustration of not feeling like myself, the Lord has given me so many things to be happy  about this week. I woke up this morning and Ben my brother had made me eggs and toast. I have been so tired in the mornings, and it has been really hard for me to get out of bed in time to grab something for breakfast. So when I walked out of my room, he popped up from around the corner holding a plate of breakfast and says, “HEY! HELLO…Good morning, I made you breakfast”.  It was like I almost startled him.  I laughed so hard, but it was sweetest thing ever.  It was exactly what I needed at just the right time. Thank you Lord!!!! J 

Church last Sunday was amazing.  I truly believe that the Lord is using Pastor Suites’ sermon to get me through this week as well. He talked about how sometimes we feel like we are so insignificant and how at times we feel like we have nothing to offer, whether it be monetarily, physically, mentally, or spiritually. We find ourselves doubting our worth, and doubting the ability we have to be world changers. God used this sermon to reassure me, He will meet me where I am. Even in these weeks where I feel the worst He will use me, if I just let Him, and trust that He knows what He is doing and He knows what I can handle.

It has been a tough couple of days, but there is no doubt that the Lord is carrying me through each one of them.  He will be right there with me on Friday, and this coming weekend when everything seems to be a blur.  

Another verse that I have clung to over the last couple months is this and I will close this post with it.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
                                                                                                                                                        -2 Corinthians 1:3-4

Allow him to meet you where you are and to use the life you have been given to help those around you. God Bless each of you!!!

 ~Ellie

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