Friday, March 29, 2013

There is Hope!

First of all, I want to apologize for blowing up all my Facebook friends' walls with my many posts the past couple of days. Bear with me - since I'm not working anymore, I'm trying to learn how to balance my time and activities.

I've been feeling really, really good the past couple of days. I feel like I'm almost back to my old self. Part of that could be that for the first time in a while I haven't been wrapped up in procedures and talking to the doctors so I've been able to put things in the background for now. I still have to schedule my second endoscopy, but I think I haven't called the hospital yet because I'm partly wanting to put it off so I can feel normal-ish a little bit longer.

Eric and I went on a date last night which was wonderful! We were originally supposed to go swing dancing, but it was insanely crowded at the very beginning and we knew it would only get more crowded, so we went and had some gelato instead. :) It was just nice to be out, not talking about my health, but talking about us and the exciting things in our future instead. I love my husband - I can't brag about him enough. He is the most generous, kind-hearted, selfless, compassionate person I know and I am so blessed that he's mine.

Anyway, enough gushing. The biggest reason why I'm feeling good this week is because it's Holy Week. The week my Savior died and was raised again.

Today is Good Friday. My Savior died on this day (not this actual day, but you know what I mean) 2,000 years ago. I can't imagine what it must have been like to be a disciple on that day - looking at their Leader, Teacher, Friend... hanging on the cross. Dying. Calling on God and asking why He's been abandoned. What must they have felt? Shame...Disappointment...Hopeless...Confusion... Despair. They didn't have the certainty of the whole story like we do. They didn't know. They thought everything they had believed in was wrong, which is why Peter denied Jesus, why Thomas refused to acknowledge Christ's resurrection until he could actually see and touch Him.

Christ died. He didn't fall asleep, He didn't just encounter a painful experience. My Savior died. For what? For a measly soul like me? I am nothing. But John 3:16, as "overused" as it may be, is so true.
"For God so loved the world that He gave His one and only Son, that whoever believes in Him may not perish but have everlasting life."
I don't know about you, but I certainly don't deserve that kind of love and certainly not that kind of sacrifice. Nothing that I could have ever done could earn me my salvation - I am a despicable human being, unworthy of the gift God has given me.

So today we mourn the death of Jesus. Today we look at the great sacrifice He made as He shed His blood on the cross to save us from our sins and eternal punishment. But this is not the end. We have Sunday to look forward to. However, as much as I want to shout praises now, now is a time for solemnity. Now is a time of remembrance for the ultimate act of Love.

Take my advice - if a church near you is doing a Good Friday service, go to it. Hear the Gospel being preached, and take the time to remember what Christ did for you and for everyone else who believes. So often we go about our lives and forget. We're too "busy." The practice of remembrance and solemnity is lost on us. So tonight, if you believe in Christ as your Savior, take communion. Focus all your energy and attention on what He did for you. Allow it to overwhelm you. Allow yourself to be overcome with emotion because of the great price He paid for you. And when you leave the church, when you move on with your evening and your weekend, don't forget. Keep remembering. Keep the knowledge of what He did for you fresh in your mind.

Never forget that Christ died to save us from our sins, but more importantly... never, ever forget that He's no longer in the grave.

Friday, March 22, 2013

Moving On.

Well, today is the first day of what I would call my "new" life. I am no longer working, and I am planning on learning and reading so much about eating gluten-free and living a healthy life. I know it's going to be an adjustment to be more of a homemaker now, but I'm determined to do it. For all of you who haven't seen my recent update on Facebook, here is what I posted as my status yesterday:

So, there have been a few corrections to my diagnosis. I was originally told I had Primary Sclerosing Cholangitis, but was given paperwork on Primary Biliary Cirrhosis, which made me think I had the latter. However, it was the nurse that apparently made the mix-up, so I actually have PSC - not PBC. They're essentially the same thing, except that if I do need to have surgery on my liver, it may not have to be a full transplant. They could potentially do a resection of some of my bile ducts or take a piece out of my liver instead of replacing the whole thing. So that's a huge praise.

I do have though what the doctor called a "Dominant Stricture" which means there is something causing one of my ducts to be either inflamed or scarred (which is what has been causing my pain). There is a chance of a tumor, but the doctor assured me that it's an extremely low chance because I'm so young. He believes that it is scarring, and hopefully the Mayo Clinic will be able to open it up later on.

With my UC I now have Low-Grade Dysplasia which puts me at a high risk for cancer cells in my colon. This means that anytime this year to three years from now I will most likely have my colon removed. This will be very difficult - however, after having UC for 15 years now, I am ready to go through that surgery so I can feel somewhat normal. Thanks everyone for your prayers. I have more tests and doctors to see, but I was greatly encouraged when the doctor today pulled Eric aside and said, "She has a rough road ahead of her, but she'll be okay."

There is hope, friends! Things are difficult right now and will continue to be until everything gets figured out, but I will fight, and come out of everything victorious because I have Jesus Christ my Savior giving me strength to go through everything. Thank you so much for your prayers! I'm sure I'll be blogging about everything later - until then, I'm just recovering and trying to relax. I officially ended my time at Caribou today. I'm sad that I wasn't able to fulfill my two weeks and say goodbye to everyone like I wanted to, but I know it's for the best. I need to have as little stress in my life as possible, especially right now. It's hard finding out the actual diagnosis and future for everything, but I have tremendous faith that everything is going to be okay and God is going to use this for my good and His glory. 
 ---------------And another quick correction - I may be incorrect about the resection of the bile ducts (surgery meds, you know). What my mom and Eric are telling me is that I may need a transplant of just the bile ducts, but that would still be significantly better than a full liver transplant.---------------

I truly do have hope.  I know that the road ahead of me is going to be full of challenges, heartaches, sickness and tears, but I'm ready. I know that I will come out on the other side being a stronger person and having a stronger faith. Everything happens for a reason, and I know that God is putting me through this in order to shape me more into who He wants me to be. I'm not going to lie - I'm scared. I know it's going to be really hard, and whenever I have surgery there will be a long process of recovery. However, I know that God will be by my side throughout everything and He has given me a wonderful husband, family, and friends to support me through everything.

I know I keep saying this, but I cannot thank everyone enough for the incredible support I've been given. I truly feel so blessed and so overwhelmed to have so many wonderful people in my life. I will do my best to make everyone proud as I walk this journey that the Lord has set out for me. Thank you all for your prayers - keep them coming. I know the Lord will do as He will, but it won't stop me from continuing to pray for a miracle in healing as I walk this road. :)

Joshua 1:7-9

“Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go.  Keep this Book of the Law always on your lips; meditate on it day and night, so that you may be careful to do everything written in it. Then you will be prosperous and successful. Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Love you all. <3

Wednesday, March 20, 2013

Bittersweet Times.

The past few days I've been starting to tell my customers at work that I'm leaving in a week and a half. It's been extremely bittersweet because even though it's not the best job ever and I'll be thankful not to deal with the stress anymore (I take on stress really easily), I have honestly the best customers in the world. Today I posted a Facebook status saying,
The hardest part of leaving my job: saying goodbye to my wonderful customers. Feeling so overwhelmingly blessed to have such special relationships with them. Already received much encouragement from them, a card from one, an invitation to spend time at my favorite older customer's home (Mary), prayers, and an opportunity to sit down and talk to another one after work today. Who knew I would grow to love my customers so much?
I cannot begin to express how much I love my regulars at work. Just a few of them include Rick, Joe, Nancy, Mary, Judy, Mary, Jackie... etc. I have never worked in a place where the people have been so kind and caring and have genuinely cared about someone who is just their barista. They are truly invested in my life and care about what's going on with me. So here's a moment where I'm going to brag about how awesome they are and get a little sentimental:

Rick: He's a total goofball and always cracks jokes when he comes in. He comes in at least twice a day, and is always a bright spot in our day when my coworkers and I see him. He gave me a card yesterday that I was so blessed by and that made me cry. I'm so thankful for him and for the encouragement and prayers he has offered to me.

Joe: I don't know Joe very well, but he is a Christian as well and has taken a genuine interest in my life. He told me yesterday that he has something for me before I leave, and I feel overwhelmed by  his generosity, whatever it is that he has for me. I have felt incredibly blessed by his desire to pray for me and learn what is going on. I will my miss my conversations with him, for sure.

Nancy: Nancy is like my Caribou "mom". She's always looking out for my best interests - she challenges me to be better, gets excited about the good things in my life, sympathizes/empathizes with me in the difficult times, and has just always been there to be supportive. She came in yesterday and while we didn't have time to talk then, she told me that she wants to sit down and talk to me after my shift is over today. I'm so grateful - she is a huge blessing in my life.

Mary K: I cannot say enough about Mary. She is the most wonderful woman I have ever met (besides my grandma). She is in her seventies and has lived a full life - she has been such a wonderful and encouraging person to me. I talked to her for a bit yesterday and told her everything that was going on, and she told me that she loved me and was going to miss me when I leave. I will hopefully be visiting her home sometime next week, and I can't look forward to it enough. To have a relationship with a customer outside of the four walls at my coffee shop will be a wonderful thing.

Judy: Judy has recently gone through some extremely tragic situations in her life, and I feel very privileged to give her my prayers and encourage her as much as I can during those hard times. Having her call me a "dear friend" was such a blessing, and I'm hoping to see her before my last day so I can give her one last hug and tell her she's still in my prayers.

Mary and Jackie S: This mother-daughter combo is such a blessing to me. Throughout the last couple of years they have come into the store almost every day, and sometimes twice or three times in a day. They always sit and play cards and talk to us. They are so sweet, and I have been very blessed to know them. They gave me their numbers so I can let them know what's going on with me in the future, and I'm so grateful that they care enough to know what's happening after I"m done at the store.

I know that it's hard to connect to this post because hardly anyone reading this knows who these people are (except for my awesome coworkers), but I can't help but brag about my wonderful customers. I feel so blessed and overwhelmed by their generosity and offer of prayers and encouragement. They have truly been huge influences in my life the last couple of years and I'm grateful to call them not only my customers, but my friends as well. What a blessing they are. I'm certain that I will cry on my last day of work.

Thanks for reading, friends. <3

Saturday, March 16, 2013

This Will Not Define Me.

You know, after finding out everything yesterday, there's a huge part of me that wishes the doctor just hadn't said anything to me about my illness. I know it's better for my health and wiser to know what's going on, but the saying that "ignorance is bliss" is so very true. Before I knew about all of this I was happy. I was feeling healthy. I was eating better and exercising, and I felt great. I still feel pretty good, but even when I feel good I have this sinking feeling that no matter how good I feel there's still something wrong with me.

I know that I have the power to change how I feel day-to-day. I know that just because I am sick, doesn't mean I have to feel sick. Now that I'm done crying about everything (I don't think I'd be able to cry if I tried), I'm feeling more hopeful. I feel as though I need to fight back. My UC and PBC won't win. I'm going to make sure I'm as healthy as I can be so if I have to get a liver transplant, it'll be the healthiest inflamed liver the doctors have ever seen (that totally makes sense...right?).

I received a Facebook message from one of my friends in Colorado last night, and one of the things she said stuck out to me - she told me that I'm a fighter and I always have been. As unsure as I am about how true that really is, I'm now determined to fight back against this and not let it win. I know that I'll be going through a lot of tests at my hospital now as well as the Mayo Clinic, but I'm not going to let that get me down. The sooner I get the tests over with, the sooner I can get back to a relatively normal life.

Speaking of normal.. it's only been a couple of weeks since all of this has started and I'm already aching for normalcy again. I'm aching to feel healthy and enjoy the relationship with my husband, family, and friends without this nagging thought in the back of my mind that I'm sick. I'm aching to be able to work again without wondering how negatively the stress is affecting my condition. And as much as I desire encouragement, I also desperately don't want the people around me to think of me as "that sick girl." Please don't misunderstand me - I so appreciate everyone's encouragement and comments. You have no idea how much it helped me yesterday when I felt the lowest of the low. But I'm praying that you don't just see me as a sick person and someone to feel sorry for.

I understand how easy it is to do that - I've done the same thing plenty of times myself. What I desire is for people to talk to me for me, not for my illness. I don't want this to become my identity. I know that I can't escape from the fact that I'm struggling with it, but I want to live as normal of a life as possible.

That being said, especially in the beginning stages as I start to process through everything, please don't hesitate to send Scripture, encouraging thoughts, notes, etc. I am more than willing (and want!) to receive them and I'm so grateful for all of the encouragement I've received already. My attitude has changed some from yesterday - I know that God is in control and He knows what He's doing, but at the same time I still don't want to pick up my Bible. I know that turning to Him is going to be a long process. I wish I could say that I'm now getting as much of the Word as possible, but that would be a lie. I'm still fighting the feelings of anger and confusion... well, maybe not so much fighting at the moment as I'm actually angry and confused and want to stay that way for a while.

Again, I don't wish to alienate anyone by these words that I've said. If you want to send encouraging words at any time, please don't hesitate to do so. The only thing I'm cautioning against is looking at me as a sick person and not seeing beyond that to who I really am. I am determined for this sickness not to define me, and I pray that you will help me with that.

Friday, March 15, 2013

Primary Biliary Cirrhosis. (Actually now it's Primary Sclerosing Cholangitis.)

Dear Friends,

It is hard to put into words what I’m feeling right now. Scared, confused, angry, depressed, hopeless, hopeful… I keep going over and over what my doctor said to me this morning. I have Primary Biliary Cirrhosis. This is a very rare disease that is connected with my Ulcerative Colitis. Only about 2% of UC patients develop this disease. It is incurable, and right now there are no known treatments for it.

To explain this disease a little bit… basically the ducts (tubes) coming out of my liver are inflamed and could possibly have some blockage. This would explain the pain I felt a couple weeks ago. The pain has subsided, but the inflammation is still there. This is a progressive chronic disease that could (and most likely will) spread to my entire liver. If this occurs, then the only cure would be a liver transplant. I asked my doctor how likely it is that this would happen, and he told me I might not need a transplant, but usually people who have this disease eventually need to get it. There is also no timeline for this disease. It is usually slow-progressing, but the last time my doctor told a patient that, the patient needed a transplant 6 months later. Needless to say, it’s hard to know what is going to happen.

The plan right now is for me to get an endoscopy next week so they can check out what’s actually going on. I’m at a greater risk for cancer because of this inflammation, so they want to make sure there’s no cancer in there now (please be praying that there’s not – I don’t think I could handle something like that also happening). After that I will need to do a follow-up with my doctor, and then in the next few months I should be set up to visit the Mayo Clinic. I feel very blessed right now to be living in Minnesota and only an hour away from the Clinic. From what I’ve heard it sounds like they have some experimental treatments right now and they have programs for exactly the disease I’m dealing with. What a blessing.

I just heard the news this morning, and I already feel so supported by everyone around me. To all of you who have offered your encouragement and prayers, I feel utterly grateful. I am beyond words – I can’t tell you what it means to have a support system like all of you. I put in my two week’s notice at work – I know that some of you may think that this was a rash decision, but I know it is for the best. I can’t spend my precious time and energy on that job when I should be focusing on staying sane so I can stay as healthy as I can. My emotional and mental health really does play a factor in my physical health. I know I’m going to go crazy not working, but thankfully I have my final online class to work on, so that will keep me busy for at least the next couple of months.

My parents are flying in to see me tomorrow, and I’m so grateful for that. I’m so excited to see them. Getting the news like I did today made it so much harder to be away from my family. Please don’t misunderstand me, though. I have the absolute best husband in the world. He has been so caring, so compassionate, so loving… I don’t know what I would do without him. He is my rock and my best friend. I feel so awful putting him through this, but I am so grateful for his patience and understanding. If any of you see him or talk to him, please let him know how great he is, because I can’t tell him enough. God knew what He was doing when He gave me that man.

I know that God is in control. I know that since the beginning of time He has known exactly what is going to happen with me, and He knows how He will be glorified in everything. If I’m being totally honest, I’m having trouble not being angry right now about the fact that I not only have one chronic illness (UC), but now I have a second. Both could require major surgeries in the future and could also make me very sick. It’s so true that man plans his life, but the Lord orders his steps. Before all of this started happening I was hoping to go to grad school and get my Master’s. It’s looking now like that will be put on hold indefinitely so Eric and I can focus on what’s really important – our relationship and building our family. Please pray for wisdom as we try to figure out the direction of our lives at this point. I have no idea where we’re going to go from here, but I’m desperately trying to remember that the Lord is in control and He knows what He’s doing. It’s been a whirlwind of events lately, and I’m really just wanting everything to slow down. I don’t think it’s going to, but I can hope, right?

Praise God that He has given me good health thus far – my UC isn't active right now, and that is something to definitely praise the Lord for. It has spread to my entire colon now instead of just affecting part of it, but the fact that it is dormant at the moment is huge. Please pray that even though I have all this stress that it remains in that state.

Thank you all again for your prayers, thoughts, and encouragement. You all mean so much to me, and I am grateful for each and every one of you. I covet your continued prayers, though. I need them more than words can say. I need the Lord’s presence and comfort more than ever right now, but I’m struggling to open my Bible because I don’t even know how to feel towards God right now. Truly. Call me a heathen, tell me I need to have more faith… I am simply struggling not to be angry with Him right now and to draw near to Him like I know I need to.

For those of you who have read through this long post, thank you for sticking it through. You’re a true friend, and I’m grateful for you.