FINALLY Home From the Hospital!

Hey, everyone!

For those of you who haven't seen my barrage of Facebook posts and Tweets, I'm finally home after a grueling last few days! Here's how it went down (I'll leave out the gory details):

I had surgery on Friday morning (the 14th). I checked in at 6 am, but I don't think my actual surgery started until about 10 am. I was scheduled to be in for 4 1/2 hours, but everything went so smoothly they were done in 2 1/2! That was such a huge praise, because even though I still had to deal with a lot of issues afterwards, I would've had to deal with even more issues the longer I was under anesthesia.

I started eating solid foods that evening (which was CRAZY), and even though a couple of my organs (my bladder, in particular) had some trouble waking up, I did really well for the most part while I was still at Mayo. They released me on the 16th because I was doing so well, but unfortunately things started going downhill from there.

We're not really sure what did it - it may have been the "trauma" from an hour and a half drive home, it may have been that I was released too early, it may have been that I ate solid foods too early... we're not really sure. When I got home I almost immediately started feeling nauseated, but I hoped it would go away. Unfortunately we weren't given any nausea medication, so there wasn't a whole lot we could do to stop it. Late Sunday night my nausea became so extreme that I started vomiting and had to be rushed to the ER. Let me tell you... For someone who has never had an experience in the ER like that before... It was scary. They pumped me full of meds and did X-Rays and CT-Scans right away.

They found out that what was left of my colon hadn't really woken up yet, so when I was eating food it wasn't going anywhere (thus it came back up). They were very strict about not letting me have anything to eat or drink on Monday, but on Tuesday morning they bumped me to clear liquids, then full liquids, and then on Wednesday morning they let me have solid food. Since I was able to keep everything down, they finally released me Wednesday afternoon! Since then, I've been doing really well.

Right now I'm actually not on any pain medications - my doctor at our local hospital told me that narcotics slow the system down which means I could end up having another episode like I had on Sunday night. As soon as he said that I decided it would be nothing but Tylenol for me! I haven't needed anything at all yet though, which is a huge praise. The main thing that gets to me now is the anxiety and the exhaustion.

All that being said, here are some things I could use some prayer for:

1. Anxiety - Ever since the surgery (and especially after Sunday night), I've had a lot of trouble sleeping due to anxiety. When I was at the hospital they gave me medications to help me sleep, but now that I'm home I really want to take as few meds as possible. I only slept about 2 hours last night and even though I know sleep will come eventually, I've never had to deal with anxiety like this before and it's really frustrating. Even when I feel calm my heart feels like it's racing, and I'm really wanting that to go away so I can relax and be able to sleep.

2. Strength - Getting home yesterday and showering for the first time in 6 days was extremely exhausting for me. Today I just feel dead on my feet. I'm in a good mood, but my muscles are so tired and don't really want to move. I know that this is all part of the process, but it's definitely frustrating especially when I'm dealing with not sleeping and my muscles not wanting to move.

3. Patience - Part of the reason I'm not taking medications is because I know I will get better faster the less time I lean on those things in order to feel better. I know there are many things I cannot do for a long time (ex: I'm not allowed to lift more than 5-10 pounds for at least 6 weeks), but I want to feel more able to do normal things like... walk. Haha :) So far I really do feel pretty good, but I still get very tired very quickly (I know I'm only 6 days out from surgery and I'm doing really well, but it's still frustrating).

4. Moving - Now that my surgery is out of the way, it's time for Eric and I to really focus on moving. I know I really won't be able to help with the actual process very much, but please pray for volunteers (or please volunteer if you can) to help us pack and clean when we need to do those things. Please also pray that Eric is hired out in CO soon so we don't have to worry about that anymore. I know he will be hired somewhere, but the waiting period is definitely stressful.

Thank you all SO much for your prayers, encouragement, and incredible support on this journey! We so appreciate it, and I feel so overwhelmed by all the flowers, cards, texts, messages, etc. that I've received. Eric and I are so blessed to know you all!

PS - We received the pathology report from my surgery yesterday and there was NO sign of cancer in my colon, which is a huge praise!

Please also let me know if you have any questions or want further explanations on anything - even though I'm not on meds I'm so tired that I'm sure I've left some things out. Thanks, friends! <3

BIG NEWS!!

For everyone who didn't see it on Facebook yesterday, we FINALLY have news! And praise God, as long as a couple tests come back normal, we have the best case scenario with both diseases!

Firstly, with my PSC (my liver), they opened up the stricture in the duct and my doctor doesn't anticipate me needing anything else done for possibly the next decade. Wow! I will still need to get an MRCP (An MRI, but they check for different things) done in 6 months and blood tests done every 6 months to make sure my levels are still okay, but I can definitely do that! He said that on average patients who have PSC need a liver transplant about 15 years into their disease, but he does have patients who have one stricture opened and never need anything else done. Obviously we have no idea what it will be like for me, but this is good news - especially since my levels are all normal and he doesn't anticipate me needing anything else done with that for a while!

Secondly (and most importantly), I am having my colon removed on June 14th. Yes, you read that right. I am having major surgery in just 8 days! My UC itself is actually mild, but because I've had this disease so long, I'm so young, and I do have some concerning areas that could turn cancerous later on, my doctors recommended surgery. The surgeon that we talked to was going to give us names of doctors in Denver who could do the surgery, but while we're here in Minnesota, I would much, much rather have it done at Mayo. Just so everyone knows, this is the only reason it's getting done so quickly. I don't want anyone to be worried about why it's moving so quickly - since we're moving in just 6 weeks, I will need all that time to recover.

Here is the WONDERFUL NEWS, though! My disease is labelled "rectal sparing," which means the last 12 inches of my colon are untouched by my disease. This means even though my colon will mostly be removed, I will not need a second surgery OR an ostomy bag! This surgery will also not affect my fertility AT ALL. Praise God! This is exactly the kind of news that we wanted to hear! If I needed to have surgery, this is the surgery we wanted to have. The only clincher is that because part of my colon will still be there, I will continue to be on the medications I'm on now, and I will need to still have yearly colonoscopies just to make sure everything's okay. That's definitely a bummer since I was hoping to just be done with it, but I'm willing to do those things if I don't have to deal with the daily affects of the disease and I can possibly still have kids.

So here's what's going to happen: Eric and I are going down to Rochester the night before so I can rest and prep for the procedure (3 times in three months.... I got this), and then we'll find out the night before what time my surgery will be at. I guess they have to get outpatient procedures scheduled first, and then they'll know the night before what time they can do my surgery. After that, I will spend about 5 days in the hospital. It may be more or less, depending on how good I feel (Mayo likes to get people of the hospital quickly, so if I'm feeling good enough they won't see a reason to keep me longer - which is awesome). Once I get home, my recovery time will be about 4-6 weeks. 6 weeks is the absolute maximum, though, which is really nice.

This means though that I won't be able to help Eric with any packing or cleaning when we move. So this is a message to all our Minnesota friends: If you can, please offer to help Eric with anything he needs. I feel so bad that there's going to be so much on his plate. I know that he loves me and he is fine with doing whatever needs to be done, but I also know that this is going to be hard on him. I wish I could help out with packing, cleaning, and moving - I'll do what I can when I'm feeling well enough - but unfortunately this is the way things go so we can just get my surgery out of the way. If you can't help please don't feel obligated, but I know that we could definitely use it since there's going to be a lot going on.

Thank you all so much for your prayers and support. We really appreciate it, and we will continue to keep you updated on everything that's going on! And you can expect more blogs from me since my computer is going to be my only source of entertainment for a while.... :)

Done with Procedures! (For now)

Well, Eric and I are back from Mayo for the second time. For all of you who might not have known, I had an endoscopy and colonoscopy yesterday. I was also supposed to meet with a couple of doctors afterwards, but I guess they were dealing with a "situation" (I think there was a really needy patient or something) yesterday, so I didn't end up going into my procedures until about 3 hours after my scheduled time. I'm okay with that, though - I think I would have been way too groggy to process anything that the doctors told me.

So anyway, there's VERY good news on the PSC side of things. I asked my doctor beforehand if he thought they might put a stent in my bile duct, but he told me that was unlikely. He said the most likely scenario would be that they would just dilate the duct and take some biopsies. Thankfully, that's exactly what happened! What that means is that my duct is open now (for however long), and I don't need to worry about it at the moment. That also definitely cuts down the chance of a tumor being the cause of the stricture. Praise God! Definitely good news.

I don't know anything yet about my colon - all I know is that they said things went very well.

I've officially decided that I hate general anesthesia. It feels great to get some sleep in, but waking up SUCKS. I'm kind of OCD about being in charge of my faculties at all time (one of the many reasons I've never been drunk and don't even want to get tipsy), so not being able to control when I fully wake up is definitely horrible. It's been almost 24 hours and while I'm mostly back to normal, I still have this touch of tiredness and being out of it. Sucky.

Eric and I go back to Mayo on Wednesday for 3 appointments starting at 3:20. Our first one will be with my PSC doctors, Dr. Tabibian (who I saw after my procedure leaving the hospital in his gym clothes...funny) and Dr. Talwalker. The next appointment will be with Dr. Divine, who will be talking to me about what happened during my endoscopy, I believe. I'm actually not totally sure what I'll be talking to him about since he's not the doctor who actually was in the procedure, but we'll see. Lastly, I'll be meeting with my UC doctor, Dr. Hanson. So... all good things! I'm actually semi-considering tabling the idea of getting a colectomy depending on what she says. There's a different kind of medication called Remicaid that I haven't tried yet, but a few of my friends are on it and it has actually put them into remission. It is expensive and requires injections every couple months, but it might be worth it in order not to have major surgery right away. Again, this all depends on what my doctor says about the urgency of my colectomy and whether or not they would have to do a full one (with the ostomy bag and the effect on my fertility).

Anyway, that's all the news I have for now - let me know if I left anything out or any of you have any questions!

Prayer Requests:

1. I'm still in pain from yesterday's procedures - my stomach is sore from not eating for 2 days and then trying to adjust to food again, and my neck and throat are sore from the endoscopy. Prayer for that to go away is definitely appreciated!

2. Please pray for good news when we talk to the doctors on Wednesday. After how well the procedures went yesterday I'm definitely hopeful, but I'm also trying not to have false hopes - I want to be realistic, yet at the same time pray for good news.

3. Eric and I are going to get started soon on the whole moving process (we move in only 43 days!), and we need as little stress as possible (although we know there will still be a certain amount of stress involved with moving across the country...). We need to start looking right now for storage units in Colorado Springs (we'll be living with my parents for the first couple of months), and we need to look for a moving truck that isn't horribly expensive.

Thank you, everyone! We love you all, and we feel so encouraged and blessed by all your support. Keep it comin'! :)

Things I've Learned About Health and Diseases.

Ok so, I know that I generally want this blog to be a little more lighthearted, but my post today is more serious because I really have something on my mind and heart. It's about health.

My entire life I've struggled with a disease called Ulcerative Colitis. Because it's a hidden illness, many people haven't understood when I haven't  felt "up to par" or have been stuck in bed with no visible signs of illness (fever, throwing up, etc.). I kept my disease private for many years because of the fear of being rejected, misunderstood, or ridiculed. When I was in college, a friend of mine with the same disease was not afraid to share with others what she had, and I was really envious of her bravery. I decided, in time, to do the same. I wrote a post in 2009 talking publicly about having UC, and have felt a lot more free since then. I have still run into people not understanding what my disease means and what the effects are, and that has been difficult. My awesome friends, family, and my hubby are incredibly understanding and helpful though, and that's all that matters. 

One thing I'm really frustrated with though is the fact that many, many people that I have come across do not accept diseases that they don't know, don't understand, or can't see the physical affects of it. They are either ignorant or hard-hearted (sometimes it's hard to gauge which one it is), and it's hurtful and terribly aggravating. So, here's what I want to do. I'm going to give a list of things I have learned about health and illnesses, and if it helps just one person accept hidden diseases more readily, then I will be perfectly happy with that. 

1. Never, ever judge a disease based on someone's appearance.
This may sound like a no-brainer, but it is really surprising how many people see the way someone looks (if they "look" sick or not), and try to judge their health based on that. My entire life I've "looked" fairly healthy. I'm not overweight or underweight, I don't have bags under my eyes, my pale skin is due to my genetics and not my health, etc. When I started telling people that I have Ulcerative Colitis, many of them were shocked because I look like a "normal" person. One of my sisters has had Fibromyalgia most of her life, and people would never guess that it's something that causes her tremendous pain in her everyday life because it's not "visible."

2. If someone tells you they're in pain, not doing well, etc., do not automatically assume they're being dramatic. Give them the benefit of the doubt.
Even though I have a hidden illness, giving someone the benefit of the doubt is something that I have struggled with in the past. I used to have a hard time not thinking that when someone says they're really sick or in a lot of pain that they're just full of it and exaggerating what's really going on. However, the way I approach people when they tell me what's going on has changed because I know how it feels not to be believed and to feel judged for expressing what's going on. It sucks, you guys. It really, really sucks. I'm sure I could have put that more eloquently, but I cannot tell you how invalidating and small it makes me feel when I tell someone how I'm feeling and they look at me as if I'm lying or just dramatizing things. I may not struggle with my UC nearly as much as most other people with this disease, but what many people don't realize is that the medication I take for it lowers my immune system, which means that I am more easily fatigued and I get sick easier. When I am sick, I am sicker than most people and for a longer amount of time. I cannot tell you how many times people have thought I have just dragged an illness out for attention, to get out of work, etc. But that has never been the case. Trust me, I would love to be healthier and more free to do the things I want to do. Being sick is definitely not what I would prefer.

3. Never try to downplay what the person is feeling.
What I mean here is when someone tells you they're struggling, their disease is flaring, etc., do not tell them "Oh, you'll be fine." Or, "Well, if it's that big of a deal, why aren't you in the hospital?" Or, "Just don't think about it." The only thing I think of when I'm told these things is, "Really? You don't think I've tried not to think about it? You don't think I've tried to continue doing things normally?" People think that going to the hospital should just be an easy decision. Unfortunately, when money and insurance is involved and you're not sure how serious the flare-up or problem is, it can be incredibly confusing whether or not a trip to the hospital is necessary.

And finally...

4. SUPPORT THE PERSON.
If someone who is ill feels unsupported or not cared for by those around them, it can be very debilitating emotionally and even affect how they feel physically. I can point to times in the past when I have physically felt worse or better depending on the people around me. If I feel supported, I feel as though I can get through anything. If I feel like I'm just being judged, I want nothing more than to be out of that situation and I often just try to forget about my health (which can be the worst thing possible).

At the moment I'm struggling with the possibility of gall stones and I might need to have my gall bladder out. I've been supported by most people, and felt unsupported by others. While getting my gall bladder out won't be a huge deal, when I'm around those who support me and genuinely want the best for me, I feel like I want to do everything I can in order to get better and figure out what's going on. Those who don't support me... I feel like I need to do what will make them happy instead of what's going to be healthier for me. The same is true (and even more important) for those with long-standing and chronic illnesses. Support is paramount. It's amazing how someone's emotional health can really be a factor in their physical health.

So there they are. Four things I've learned from my experience in dealing with people who don't understand chronic and hidden illnesses. If more people can be less judgmental and more supportive, I think it would go a long way and people with illnesses will feel much less like outcasts and more cared for and accepted by their peers. After all, don't we want to love the people around us in the best way possible? What's stopping us from being supportive? Whether you're a friend, family member, spouse, coworker, neighbor, you have the ability to support those people in  your life who struggle with chronic illnesses. All it takes is a little less selfishness and a little more understanding.


<3

Health Again and Reflections.

Well, I'm starting to feel better. Praise God. I had some pain last night, but not nearly as much as the other night, and 3 Tylenol definitely did the trick and I slept all night. I hope this is the beginning of getting healthy again. This past week with all of this going on has been horrible.

For all of you who don't know, I went to the emergency room yesterday. Multiple people told me that I should go, so even though I didn't want to, I decided it would probably be safer to go. Unfortunately however, the labs came back inconclusive. *sigh* That's really frustrating to me. One of the doctors (an intern) just wrote me off and didn't see it as a big deal at all. He was a really strange doctor, too. I think at the very beginning he was trying to flirt with me, but then I think he saw my engagement ring (thank you, Eric. Among other things -obviously-, I love the fact that you save me from creepy guys). Then he became serious and explained things well to me, but then at the end he acted as if I was overreacting and nothing was really wrong with me. Oh well, I guess. One positive thing is that he did say that the place where I have my main pain is not a "dangerous" place medically. A lot of people have pain there, and it ends up going away through Tylenol and other things. He did say that it could very well be a small ulcer, so he suggested I continue taking Zantac, Tylenol, and then add Maalox (yuck). So, nothing has been discovered about what's wrong with me, but at least I'm feeling better. Let's just pray that it continues.

Now on to my reflections. As the semester has pretty much ended for me (I'm getting extensions on all my finals and assignments), I've been looking back at what an eventful semester this has been. Eric and I have been engaged for over 2 months already. At first it seemed like it would take forever for the end of the semester to get here, but now that I look back, it really flew by. I hoping I feel the same way about second semester, so then he and I can finally be married. I say "finally" facetiously and seriously because even though we haven't even been together for a year yet, I'm ready to marry my best friend. I don't want to wait anymore. Alas, I guess this is the place we're in, so I need to be somewhat content and deal with it.

One thing I've been realizing through looking back on the semester is this: I am incredibly blessed. And I almost always take it for granted. I have a family who loves me, and now we have a wonderful new addition (my nephew), and my family is going to definitely grow in June when I gain a whole other side to my relatives. I have a man who loves me deeply, and I don't always see that clearly because of my selfishness. He's so good to me, and I'm... well, I'm just me. I don't deserve him, that's for sure. I am blessed beyond anything that I could imagine. I have wonderful friends who love me, and are willing to take care of me when I'm feeling like crap. Annie Bolger has been absolutely amazing to me in the past few days. She drove me to the hospital, stayed with me while I was in the emergency room, and make me cream of wheat after we got back from the hospital.

Yes, I'm very blessed. I don't deserve anything that my wonderful God has given me. He loves me unconditionally, even though I am a wretched sinner, and I do not take nearly enough time to thank Him for that. He is so good to me. I really need to learn how to be more grateful to Him and to others. Instead, I normally just tend to focus on myself.

I'm looking forward to the start of a new year in 3 weeks. It'll be nice to start fresh, and look forward to so many new things in the months ahead. Graduation, getting married, moving to Minnesota, (maybe) getting a house, being a youth pastor's wife, getting a new job, and starting a new life. It's going to be wonderful, and I'm so excited to start it all with my best friend, knowing that our focus is on Christ and on His plan for our lives.

God is good, all the time.

And all the time, God is good.

Health Issues.

Oh boy. I really hate having UC, and not being the healthiest that I could be. But.... I need to remember that God has a plan and He's in control of everything.

For the past few days, I've been having intense stomach pains, and the first day I was bleeding. I'm really not sure exactly what's going on, but I really appreciate everyone who has been praying, and I want to ask for prayers from everyone else. I think it started as a flare-up of my UC, but now it's something else. Right now I'm thinking that it's actually an ulcer. This, even though it sucks, would actually be welcome as opposed to the alternatives, which could either be that I'm having a really bad flare-up and thus would need to go to the hospital, or I'm lactose intolerant, and it's taking forever to get out of my system. It would make sense for it to be an ulcer as well, because since I have UC I am prone to getting ulcers. I haven't had one in the 14 years I've had this disease, so maybe it's just time that I had one. Buh.... Not fun.

I talked with my doctor, and he just told me to take Zantac until it gets better, so that's what I'm going to do. I'm really praying that this is what it is, and it will get better with just powerful antacids. I really don't want to go to the hospital....

I'm at a point where I'm really trying to see God's purpose in all of this. I hate being sick, and I've been able to live a relatively normal life, but it's times like these when I really feel like I don't know why God put me into this situation. It's been nice however to continue finding out other people who have this disease or know someone else who has it. It really makes me see that I'm not alone in it.

Thanks again for the prayers, everyone. I really appreciate it. Please be praying that I start feeling well enough that I'll be able to do well on my finals this coming week, and that the 8-hour drive to MN won't be torture for me on Wednesday. Thanks, guys.

Absolutely Overwhelmed.

Oh my dear friends... You have been absolutely amazing. I haven't felt more supported and loved than I do at this very moment. Receiving all of the facebook messages, comments, and texts has been so special. Thank you all so much for your prayers. I couldn't ask for more. You all are truly great, and I am blessed to have you all in my life. Thanks again. I really, really appreciate it.

<3

Time For You to Learn More About Me.

I've been really thinking today, and I think it's time that I shared something about my life that not a lot of people know. I won't give many details, but it's about a sickness that I've had to deal with for thirteen years.

I have a disease called ulcerative colitis, which is an inflammation of the colon. It bleeds, can develop polyps easily, has difficult side effects, and also increases the risk of cancer. For the majority of my life I have been blessed to be fairly healthy. Sometimes though, I would have flare-ups resulting in embarrassing and difficult consequences. However, I never really thought much of this. I just took it in stride and moved on. No big deal. I never really understood the seriousness of my condition until this morning, when I had my yearly colonoscopy.

It's difficult for me to talk about these things, but please bear with me. The way my doctor described my condition was that it's like someone took sandpaper to my colon and messed it up. It looks terrible (trust me, it does. I saw the pictures from the procedure). He talked about how surprised he was that I've been able to hold up so well given my circumstances and my condition.

I've never had huge problems with this disease before. For a couple years I was really close to remission, but now it's back and more active than ever. I am not telling you all these things in order to gain any pity of any kind, but rather to ask you for prayer. It's really difficult for me to ask this, because I want to be normal. I want to lead a normal life apart from any disease. But here's the truth: I can't. I can be fairly normal, but I am always going to have this to deal with.

I'm continuing on my regular medication for the next 2 1/2 months, and then I have to get blood tests during spring break and meet with my doctor to see if anything else needs to be done.

I don't like asking for prayer for things like this - I feel like I should be able to handle it. But the truth is that I need prayerful support from my brothers and sisters in Christ. If you would be willing to do that, I would be more than grateful. Thank you to all of you who have supported me and will continue to support me. It's a huge encouragement.

I'm grateful to God to be as healthy as I am. It definitely could be a lot worse. God is good, and I know that His grace is sufficient for me. He gave me this to deal with for a reason, and even though I don't know what it is, I know that it is for my ultimate good and His ultimate glory. God is truly showing me that in my weakness, He is truly strong.