Can You Rate Your Pain?

I took a bit of a blogging break this last week because my new class started, and because while I am sooo happy to have made it through the wedding weekend the last couple weeks since have been an uphill battle for me.

                I titled this post, “Can you rate your pain?”, because I feel like I ask myself that on an hourly basis. I always find it funny when I go for a treatment or even just for a normal check up doctors ask someone like me that question. “Can you rate your pain?”… When they ask I typically sit there for a bit, and assess my body from head to toe. How is my head? How is my tummy? How are my hips?... my knee is a little achy today, but that isn’t from the UC, that is just cause I ran hard last night, hmmm anything else?? NO I think that is it……. ok SO I think I will rate my pain at 3 maybe 4.

It is at this moment that they look at you, take a few notes, and then move right along with the appointment. I guess they just expect someone with an auto immune disease to hang out at that level of pain. This to me makes sense, because for a long time I have had to learn to live at this level.  I have had to learn how to function, run, and work at this level.

I can manage the 3’s and the 4’s but anything much over that I really have a hard time with.

It is so funny because while normal people go home talking about their day, and all the events that took place, Dante and I start the drive home with a, “how was your day, how is the head, how is the stomach, how is the nausea” and I just have to laugh. Those moments, even though we don’t intend them to, make this disease hard. Like I tried to explain in my last post even though I know that the Lord is using this it is hard sometimes, and even I wish it didn’t hurt so bad psychically/emotionally. Doctors very rarely ask you what level your emotional pain is at. Now please understand I am not depressed, but there are days that I wish I didn’t have to talk about it. Days when I wish I didn’t feel like I was boring, So often I wish I could go through a day without have to even acknowledge my UC. That feeling of being worn out or having to manage headaches that hurt so bad you can even see straight. I want to be fun, upbeat, spontaneous, and this stuff makes all that difficult.  I tried to explain to my mom the other night that while I can handle it and I can take it. I handle it because I have to. If you have a chronic disease you get it. You have to choose to make it through the day, and while some days are easier than others it can sometimes be exhausting even to acknowledge or talk about the difficulties and pain an auto immune disease sends my way.

Last weekend Dante and I had probably one of the most low-key weekends we have had in a long time and it was awesome.  We had a picnic in the park.  We went to a movie and we watched a ton of basketball. It was perfect!!!! I just got so frustrated with the fact that amidst this wonderful relaxing weekend I still didn’t feel well. I didn’t feel well at all. I try too hard to put on this front, that everything is ok, and that I can do and be everything all the time.  Well Sunday night it all came to a head, and in true ulcerative colitis fashion it became more than I could handle. I know God is growing me, but it is hard sometimes to be joyful in this. I have to tell you that nausea has become my worst enemy. I don’t know what it is but for some reason these last few weeks have been tough.

It was interesting, I met a woman at the Russell and Courtney’s wedding weekend, she was amazing. She was a true blessing to my heart, she told me she was reading the blog, and that it had touched her on a deeper level because she too has struggled with physical pain. She has an autoimmune disease and a few other things going on that cause her lots of physical pain. After the wedding she asked me to consider talking a bit more about the physical pain that I feel on a daily/weekly basis, and I have to be honest in that while I mention the pain I deal with in post’s I really have tried to not focus on it. I love that she asked about that, and she even proceeded to challenge me in it.  She challenged me to be vocal, and vulnerable in my pain.  Which is not by any means easy, because I don’t want to complain, and don’t want to be negative, but I am learning through this, that pain can be a sign of strength.  My strength comes from the Lord, and therefore if I have this pain I have to praise him because I know that he is building these spiritual muscles of mine a whole lot faster than I could without the pain.

I want to be honest and real about all the things I am feeling, and experiencing because for so long I wasn’t. I wanted to walk through life pretending I didn’t have this disease, but I am learning that the more I open up and talk about what I am feeling. The more that I talk about the hurts, and explain how God is using me in my hurt and pain the better off I feel. I am not sure if that even makes sense, but I hope you understand what I mean. So I guess what I want I am trying to covey is that while I sit here with physical pain, I feel the Lord come alongside of me and help me get through today. Which in and of itself is a praise.

I always wonder how people who don’t have the Lord deal with hurt and pain. Because holy cow when I am weak HE IS STRONG. There is something about feeling so sick, and having no earthly remedy able to make the pain go away.  It makes your dependence on the Lord more significant than ever.

The other night when I was feeling so sick and to the point of tears, there are rare moments where I let the pain bring me to tears, but it was so bad that I just sat there and cried, and I looked at Dante and he looked so defeated, because I think as a guy he wants to fix it, and make it better, but there was nothing he except pray so that is what he did, he prayed to “the one who heals”, “the one who relieves pain”, “and the one who gives you peace”.  There isn’t a pain reliever out there that compares to that kind of peace.  So while yes I am still dealing with headaches, nausea and a whole slew of other physical ailments I am so thankful that I can call on the Lord, and trust him for everything that he says he is.

               

Physically life has been tough. Running hasn’t been easy, getting out of bed hasn’t been easy. Dante tells me all the time that I am strong, and I think I am starting to believe him hahaha!!! God continues to wow me with the things that he can do through me even when I feel so worn out, and insignificant. He uses us in our pain, and in our weakness. Thank God for that J

I truly hope I don’t sound depressed. Because I want you to know that like I said earlier when I am weak he is STRONG, and HE is the one getting me through today. Thank heavens I don’t have to rely on my own strength, because it isn’t even close to the amount I need to get through. God is so faithful, and I am so thankful that He heals, and that we can claim Him for that. He is my hope and he comes alongside of me in my pain and carries me through the trial!!!!

Isaiah 41:10
“so do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. “

I am claiming this verse today, and every day, and I am thankful for that righteous right hand!!!!!!!

I hope you all had a wonderful weekend!!! Dante and I are still recovering over the loss of both our bball teams in the tournament L So LETS GO VCU or BUTLER!! HAHA (My sister and brother in law will be so disappointed when they read this….the Kentucky Wildcats were supposed to lose to UNC… but they prevailed) J

Weekend Blessings!!

Friday was another treatment day, and I wish I could say a year and a half into treatments we made it through with flying colors, however, that is just not the case.  This last Friday we had to take the earliest treatment spot which meant we had to leave the house at 5:30 a.m.  Mornings have never been my thing.  Not on normal days and DEFINITLY not on treatment days.  But thanks to Dante we made it to treatment on time in hopes of getting out of the hospital ASAP.   God, however, had a little bit of a different plan.  We got to UVA at 7 and treatment ended up taking 6+ hours (the infusion part of the treatment, I am not including the pre and post stuff).  It was weird because I fell asleep, and woke up about 3 hours into it, and was like umm…. The bag still looks pretty full so I asked the nurse to take a look at it and she had set the iv to run a whole lot slower than it should have been, so by the time we got it figured out it took a few more hours to get the rest of the medicine pumping through my body.  The other down side to doing it that way was by the time she got it at the speed it should have been at the medicine went in a ton faster, and it was like immediately I felt sick. A tidal wave of nausea and headaches took over. So after a long treatment Dante and I got in the car, and drove to South Carolina, we both prayed numerous times throughout the trip for relief from pain, and also for no nausea.

I slept most of the drive, and thankfully Dante managed to get us there safely!!

We were both in a wedding on Saturday in South Carolina, and I have to tell you that I was very nervous about how my body was going to do.  I am happy to say that I made it through the day without throwing up, passing out, all while managing my headaches. TOTALLY A MIRICLE!! God blessed me with amazing people while I was there, people who cared, and were checking on me the whole time. It was a huge blessing and I am so thankful to all who prayed because it has been no secret that I was worried about how I would do after treatment and I truly couldn’t have asked my body to do any better than it did. I think I am learning now more than ever that when you are hurting, and in pain, you have to seriously pray for the Lord to take your mind out of it.  It is when I have time to sit and think about what is hurting or bothering me, that it seems the worst.  Let me tell you though, from the moment we got to South Carolina I was blessed with people to talk to me, and help keep my mind off of how I was feeling.

I truly love meeting new people. When we got to the hotel I had the privilege for meeting some pretty awesome people.  I got to meet one the groomsman’s wives, and also stay in a room with the Grooms sister. WHAT A BLESSING that all was.  It was totally a God thing because it gave Dante the opportunity to have some quality guy time, and it left me to do what I do best… Talk Talk Talk!!!! HAHAHA 

Katie, Gabrielle and I went up to our room, and we spent the night talking. It is so amazing to me to think about how God knew that I would need those girls right in that moment, one to take my mind off “treatment day” and two to share and encourage one another in our relationship with the Lord.

We sat there, and each shared our hearts, our hurts, and what God is teaching us through each different stage that we are in. It is so cool to see the different trends/issues that we all struggle with and deal with, all while dealing with different circumstances.

One topic specifically was brought up, one that has been heavy on my heart lately, the topic of being content.  I have felt bad even saying that, because I go back and forth in my mind.  Satan has been on the attack.  I know that the Lord has me right where he wants me, and his timing has proven perfect across the board.  However, I would be lying if I said I didn’t struggle, and while I wouldn’t wish this struggle on anyone, it was so encouraging to hear that these girls, who I had spent such a short amount of time with, fell comfortable enough to tell me about areas in their lives where they were having a hard time being content as well. The interesting thing (this will probably come as no shock to anyone) is that as we looked at one another, there were things in each girl that the other wished that they had, or circumstances that each of us wished we could find ourselves. We talked about places in life we wanted to be.  Places in life that if you had asked us 10 years, or even as early as a year ago, we thought we would be at and shockingly enough we are at places that we weren’t expecting to be at. The Lord had us walking different paths, and yet we have all at one point or another had feelings of discontent.

It is so cool to see Christ vividly bringing things full circle.

A couple weeks ago in bible study Priscilla Shier did an illustration of a women standing with a glass in her hand. The glass was full, and Priscilla walked up to her and started shaking her arm. She then brought it back, saying, “You see when you are being shaken. Physically, emotionally, spiritually whatever it is, but when you are shaken what’s inside of you is going to come out, whether you want it to or not.” All that pain, anger, frustration, envy, jealously, the list goes on.  When she made the illustration I was immediately convicted, and I started to play through situations where I had felt like my world was being tested, or shaken. I thought of what my original response had been in these situations. Not the response that I had rationalized in my head a few minutes or hours after the original blow, but the initial one, the one that you very rarely tell people, and usually is thought and felt, and then you talk yourself into being ok.  You glamorize your response, when in all reality, you still had the feelings, and you haven’t dealt with them at all you just gave yourself time to think of an excuse for the feelings. Why? For what? Ultimately the one who matters most knows you thought it, felt it, and you just aren’t saying it.

Ulcerative Colitis shakes you, having a rough day with this disease leaves me worn out, and on my worst days, those filthy thoughts, come out, and Satan gets his foot in the door and I start to ask why? Why has it taken me 7 years to finish my degree, Why am I the last of all my college roommates to get married? I question God, and I find myself so blinded by my discontent that I can barely see straight. Not for long but none the less I have to tell you I have been there recently.  So you need to know that getting to spend the evening with girls who knew the feelings that I was having was a gift from God.  I needed to know that I was not the only one, and I also wanted them to know that they weren’t in this alone.  We all have moments, “The Grass is ALWAYS GREENER moments”.  I found this verse when I was begging for my spiritual slap in the pants ;)

Proverbs 27:1, “Do not boast about tomorrow, for you do not know what a day may bring forth.”

It reminds me to put it back into perspective. God pours out his love on me and I need the Lord to give me a spiritual slap on the hand.  I need to remember that He is doing a GREAT work, and he does have a perfect plan.  I know that if I had finished undergrad on time I would have never gotten this job, and more importantly I would have never met my love!  Dante and I’s relationship has been strengthened through this school stuff.  Dante has shown me what true selflessness is through the bear of helping me complete my degree, all while supporting me and loving me through ulcerative colitis. God has it figured out, he knows what I need when I need it, and I trust him with all of it. I just need a little wakeup call from time to time.  So here is a punch I am going to throw the devils way!

Psalm 37:7-9
be still in the presence of the Lord, and wait patiently for him to act. Don’t worry about evil people who prosper or fret about their wicked schemes. Stop being angry! Turn from your rage! Do not lose your temper—it only leads to harm. For the wicked will be destroyed, but those who trust in the Lord will possess the land.

Praying this post finds you all well, and hopefully encouraged!!! God is so faithful, and in his timing, his perfect timing, he will reveal his plans to you!!!!!

Love always!!

Ellie

♥ Disney Princess Half Marathon ♥

Holy Cow! There is so much to talk about!!!! Over the last couple months this blog has focused so much on the medical side of its name, “Remicade”, but today we are going to talk about the “Running” aspect of why I started the blog!!!!

Running is something that I fell in love with the summer before going to college. I owe the addiction to my dear friend Rachel.  Rachel pushed me to start, and encouraged me in those early weeks when I didn’t think I could run the block let alone a mile.  I never thought of myself as a Runner per say, but I looked at Rachel, a mother of three children, a wife and a house to run and thought, “well if she can do it, I would love to try”! So I did.  By the end of the summer I was hooked. The best thing about running is that you don’t need any special equipment all you need is a good pair of shoes and off you go! It is also one of those things that leave you NO excuse to not work out.  You can always run; rain or shine, snow or sleet, it is always do-able!!

Running has been a huge stress reliever for me.  It allows me to clear my head, and spend time talking with the Lord.  I love that time.  This weekend was the first big race I have run since February 2009.  It has been two years, almost to the date, that my body and ulcerative colitis went into a downward spiral. So this race was special.  It was special for so many reasons.  One, because as I started running I thought back 2 years, all the feelings and fears came to mind. I thought of a year and half ago listening to Doctor Finke tell me that if I kept running like I was, while my body hurting so badly that I could have a stroke. I remember being so scared when she told me that. Now a year and a half into Remicade treatments I ran my first half on Remicade.  I felt so much joy throughout the whole race. I was so thankful, and thrilled that while Remicade has been so hard on my body. Remicade treatments made this half marathon a reality in my life. Thank you Lord for Remicade J

Number Two reason, because I was able to run this with one of my closest friends Jenny. While I have had a rough two years medically, she has had her share of “life’s valleys” as well.  The day before the race she came into my room and we talked about the last two years, all the things that the Lord had done and seen us through.  I am so amazed looking back and seeing how far we’ve both come.  I couldn’t have imagined running this race with anyone else.  I was so proud of her!!! 

My third reason, well it didn’t really hit home until about 20 minutes before my corral started.  You see I signed up for this race back in September long before Lymphoma ever became something on my radar.  However that is what we were running for.  We ran for Leukemia, and Lymphoma.  I told Jenny the day before, this race meant something special to me and as we sat there waiting to start the race, I saw women around me with shirts that said, “Running for Mary” and it all felt surreal.  I started to get choked up because even though I didn’t have “Running for Mary” on the back of my shirt, the race was no longer about me, it was about Lymphoma.  It was about Mary, and anyone else that has ever been scared, affected, tested, or treated, you name it.  If Lymphoma has ever been on your radar I ran for you.  People asked if it hurt, and I would have to answer with a confident YES.  Of course it hurt, the last 2 miles was not comfortable at all, but I couldn’t focus on it, not for one second.  Jenny and I recited to one another before the race started two of our favorite verses, “For God did not give me a spirit of fear, but of LOVE, POWER and SOUND MIND”, and “I can do ALL things, through Christ who strengthens me”.  Every time I wanted to stop, or focus on my pain I said those verses back in my head.  There is no way I could have gotten through Sundays race without the Lord running every step of it with me.  Two months ago I wasn’t sure I was going be able to run this race at all, let alone finish it.  So getting through this race I most definitely consider a huge achievement.

The fan support was amazing.  There were so many runners and so many people there to cheer us on.  Jenny and I had “special spectators” in the crowd, our “Prince Charmings” were there to cheer for us and lift us up, a friend of mine named Byrd was there, and a wonderful surprise, the Beckett/Thom clan joined the crowds to show their support!!!  If you know anyone running a race, go out and support them because let me tell you, it meant the world to see our friends along the way.  Mrs. Beckett has a super loud horn and they were cheering so loud.  We saw them around mile eight and it truly gave us the biggest boost ever!!

So where are we today!  Well… I am feeling pretty good. VERY SORE!! Shocker I am sure, hahah J and I am very tired.  No complaints though J  We are headed into week five which is usually a pretty rough week for me, so I am praying that we make it to next Fridays treatment without any glitches!  Thank you all for the social networking support!  I am so thankful for your prayers, and your encouragement!! I am going to take it easy the next couple days in hopes that my body recovers quickly. I have been experiencing the “runners high” for about 48 hours now, and it feels so good!!  I am so excited to do another race hopefully sooner rather than later!!  Have an awesome week J

Ps. I will have pictures to follow, I accidently left my camera in Florida, so they shipped it up here, and I am hoping to have it by tomorrow! So I will have them up for you ASAP!!!!