Struggling for Joy

I'm struggling.

I'm not deathly ill, struggling to survive.

I'm just annoyingly uncomfortable, struggling to find joy.

Squirt has been being quite naughty, prolapsing frequently (Gross alert: means my intestines start coming out of my body. I can sorta push them back in, but then just pop back out. Squirt doesn't "work" when this happens, so then I start feeling sick and crampy. Plus, it's just really, really freaky when your insides come out).

My J pouch is not feeling better. It is making me crazy. I want it out of my body. Now. But that would mean keeping Squirt forever. While Squirt and I have had a reasonably amicable relationship, due to his recent misbehavior, we're not on speaking terms. The idea of having an ostomy forever is not high on my wish list.

The mass is pushing up against my organs and stuff, causing back pain and pelvic pain and UTI symptoms. I'm waiting to hear back from three different doctors on what happens next for the J pouch, the mass, and the kidney infection symptoms.

Today I am not a happy camper. I am happy that I no longer have UC. I'm happy that I can eat. I'm happy that I do not have so much bloody diarrhea that I'm continually dizzy and sick and in pain. But that doesn't make this new stuff any more fun. I think that the steroids (or lack thereof) are playing with my emotions, as I historically get pretty depressed for a while as I taper off and for a month or two thereafter. So I'm sure my perspective is skewed.

But today, I really feel like there are no good answers. That no matter what, I'll be stuck feeling uncomfortable for the rest of my life. That they won't be able to fix me.

Maybe there aren't any good answers. Maybe I'll be like this forever. Then I'll know that's what God has chosen for me. That's what will be best for me and bring Him the most glory. But today, I'm struggling to find joy in that. I'm choosing to trust and believe, even though I don't understand. I am learning to BE joyful even if I don't FEEL joyful.

Hannah ;)

"And hope does not disappoint..."

Throughout my journey with UC, I have clung to hope. Sort of two kinds of hope. There was hope in the sense of "I want this to happen, but maybe it won't." Hope that one day, things would be different. Hope that I'd be able to be a doctor, finish college, finish the semester, finish the day. I wore a sweatshirt with "hope" embroidered on it to every Remicade infusion. It was a mute testament to my yearning for this treatment to work and keep the UC at bay.

In the picture, you can see the necklace I wear, which also represents hope and perseverance. Summer before last, I was working and taking Physics. One day, I was really ill. My tummy was going nuts. I became so dehydrated that the world was spinning. I could barely stand up and was shaky. My stomach was raw and crampy. There was no way I could make it to class. I'd just get notes from a friend. But I also had lab, and I couldn't make it up if I missed. So during the time I was supposed to be in class, I chugged Gatorade, took a ton of Lomotil, and tried to nap. My stomach settled down, but I still felt pretty awful. I dragged myself to lab. As I trudged to lab, eyes on the ground, concentrating on walking in a straight line, the July sun glinted off something shiny. Since I have a 5-year old's obsession with shiny things, I stopped to look. It was a little charm. I picked it up, and wear it now as a symbol of tenacity and not quitting and pressing on even when things are really hard. And of hope, hope that God will allow me to succeed as I pursue the desires He's given me.

So that's the first kind of hope - the "I really hope this will happen" hope. I also have a sure hope, a hope that doesn't disappoint. Hope that God would give me the grace to endure whatever He put in my path. Hope that He'd guide me where I was supposed to be, even if that meant hospitals and doctors and suffering. Hope that I'd honor Him.

Romans 5:3-5 talks about this kind of hope.

"And not only this,
but we also exult in our tribulations,
knowing that tribulation brings about perseverance;
and perseverance, proven character;
and proven character, hope;
and hope does not disappoint,
because the love of God has been poured out within our hearts
through the Holy Spirit who was given to us."

So, I continue to hope and to rejoice in my tribulations, hoping that this will bring honor to the God who became a man on Christmas and poured Himself out for me. He came to bring hope and peace between God and man. Peter calls Jesus a "living hope," a sure way to have forgiveness from sins and peace with God. Jesus Himself calls for all to "Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you, and learn from Me, for I am gentle and humble in heart; and you will find rest for your souls. For My yoke is easy, and my burden is light" (Matthew 11:28-30). That's a sure hope that's priceless. It's worth any cost to have rest for my soul, to have this hope in Jesus.

Merry Christmas.

Hannah ;)

Weeping may remain for a night, but rejoicing comes in the morning

Yesterday was awful. There's just no other way to say it. I was so exhausted that I stayed in my pajamas until about 4 pm. My kidneys and stuff were bothering me, although that feels better with pain medicine. I was dizzy (from steroids?). My J pouch was just one continual spasm. The best way I can describe it is this: have you ever had the ever-awkward rectal exam? Have you ever really, really had to go to the bathroom - like about to have an accident have to go? Combine those two horribly uncomfortable feelings, add in spasms in that area, and that's how it feels. It was just happening occasionally for like five minute periods, but since the weekend, it's been ALL THE TIME. It's to the point that I'd gladly have surgery tomorrow to take out the J pouch and live with Squirt forever. I can hardly concentrate on anything else. Nothing has been making the spasms and uncomfortable feeling go away. Nothing. Not laying, not standing, not trying to "go" to the bathroom (even though, since my surgery, it is physically impossible for me to poop that way), not hot baths, not vicodin, nothing.

On Tuesday, I told Dr. A how much it's bothering me, and so yesterday he called in a prescription for Valium for me. Valium? Seriously?!? I was so desperate for some relief (and some uninterrupted sleep) that I took some last night. And I slept. The spasms only woke me up once before 5:30. By 5:30, the J pouch was back to driving me nuts again, but I got six and a half hours of sleep. Amazing. I felt like new person.

Today has been a lot better, so I've taken full advantage of being functional. I made 6 different kinds of Christmas goodies with Sarah, finished Christmas shopping, went for a breathtakingly gorgeous walk in the woods in the snow with Joseph, decorated the tree, had great family time, including the ritual reading of The Latke Who Couldn't Stop Screaming: A Christmas Story, and now I'm curled up by the fire having my Jesus time, blogging, and drinking hot apple cider. ;) What's not to love? If nothing else, the bad days make me just live up the better days!! I appreciate them so much, and I feel like I have to squeeze in all the life I can into those days in case I don't have another one for a while. I'm thankful that God chose to give me some relief today.

This evening the J pouch is back to its nasty little games, so I'll probably drug up again here in a sec. Hopefully the Valium will sort of break up the cycle of the spasms and discomfort after a few days. It's NOT something I'd like to take for very long. I'm really sad because I had surgery with the hope of not needing to take medicine to get through the day/night. It doesn't seem like that's happening yet. But I'm not going to dwell on that. I'm not going to worry about tomorrow. I'm just going to do what I need to do to get through each day. And enjoy amazingly wonderful days like today!

Hannah ;)

Post Op Visit #2 & ANOTHER Dr.

Hi, everybody!

I went to see Dr. A today. I've been feeling kind of awful. My J pouch has been driving me nuts with spasms. It is such a weird feeling and wow, what a weird, embarrassing problem. Dr. A doesn't really have any good ideas about why I'm having the J pouch problems, since it's not even "functioning" yet. My CT showed a 4 cm mass, which is probably an ovarian cyst, so I'm supposed to get that checked out with ANOTHER doctor to see what it is. I'm still super uncomfortable and hurting and not sleeping well, so he's trying to move up my urology appointment. We need to figure out what's going on there, especially since all my cultures are negative.

My stomach is also feeling kind of "off" for some reason, just hurting and stuff, but hopefully this is just from coming off antibiotics. I am eating yogurt daily, and I switched types, so maybe the bacteria in them were too strong for me? Scares me since I'd been pain-free there since surgery.

I'm feeling pretty discouraged about all this. I'm kind of starting over with new problems and the search for what's wrong with me. I am just so over being tested and poked and prodded. And I'm tired of feeling lousy. And I'm not sleeping well. I know I'm so much more functional than I was before surgery, which is great, but now I have all these new issues. And they are making me grouchy today. And my face is puffy because I've been on steroids so long. ;(

Dr. A is sort of vacillating between wanting to do surgery right away to see if that helps anything and waiting until everything is resolved to cut me open again. At this point, I don't really care. I just wanna feel better. I am thankful for how far I've come. I just need to persevere so we can get to the bottom (haha) of all these little annoying issues. I'm on break now, so hopefully being completely unstressed will help me to feel better - not that my semester was super stressful (I was only in three classes...) - but relaxing with my family sounds like it can't hurt! I'm so thankful for my family and friends... you all are truly wonderful and I couldn't make it without y'all!

Hannah ;)

Done With Fall '09 Semester

Hi, everybody!

I'm just hanging in there! I'm done with the semester, woo hoo! This has honestly been the most emotionally difficult week since surgery, I think. I'm just frustrated that I'm not better, and I feel like I'm starting over again on the search for what's wrong. Between the stress of that plus not feeling good, I decided to just take an incomplete in one class. So I'll have to take two tests when I get back to school in January, which is no big deal.

I've never been so glad to be done with a semester. Academically, it wasn't awful, but it was just lousy in general. It began the Monday after I got out of the hospital... and it was just down the drain from there. To top it off, I got the swine flu. This UC flare kept me out of class about as often as I was in, and was just sicker than a dog or recovering from surgery for the whole dang semester. I'm so glad it's over.

Sadly, I am just not feeling quite right. And I know I need to trust my gut on that. The urology people can't see me til sometime in January, so the ID doctor saw me again. He ran tests again, but we're all pretty sure that they will come back negative for infection, as they have the last two times we've checked. He gave me a couple meds to try for a few days to see if they improve symptoms. I also got a CT scan yesterday, so we'll see if that shows anything. I'm continuing to have back pain, UTI-type symptoms, feel tired, the J pouch is still spasming, and now I'm beginning to have that sharp pain I had after surgery again. With all that going on, I just feel uncomfortable just about all the time, and either the bladder, back, or J pouch have been waking me up multiple times the last several nights. I see Dr. A on Tuesday, so I'm interested to get his opinion on all this and see what suggestions he has on why this is happening and what I can do to get some uninterrupted sleep and feel better.

On a happy note, today I went to watch graduation. Long, crowded events are just way more fun without UC! No running to the bathroom, haha. This spring, I actually missed watching some friends walk across the stage because of my stupid colon. Not so this fall! ;) Congrats to my graduate friends! You did it!

My friend Steph is out of the hospital! Thanks for your prayers. She is still dealing with a lot of complications and isn't quite out of the woods yet, so keep praying for her! Thankfully, she can be at home with her family. Pray she gets to rest and continues to improve as she enjoys Christmas!

Hannah ;)

Another Doctor?!? Seriously?

Hi, everybody!

I felt pretty crummy this weekend. My back is hurting and I feel run down and stuff. So I was a bit surprised when my tests came back negative for infection yesterday. I can't decide if that's good or bad. This is the second time they came back negative - the first time was the week of Thanksgiving. So the ID doctor said, "Time to call your other doctors." GI doctor was called, and put in his two cents. His first thought is that I may have a fistula (abnormal opening) between my intestines or J pouch and my kidneys/bladder that is causing these problems, and wonders if this has anything to do with the J pouch spasming. A fistula could happen because of surgery or from UC, although it's more common in Crohn's disease, according to my understanding. He was going to talk to Dr. A last night and get his opinion, too.

I was slightly concerned that that's what he thinks it is. Doesn't sound like a good thing to me. But my GI doctor ALWAYS starts with the worst case scenario, then works his way down. I really doubt I have a fistula. I just don't know why I continue to have back pain, feel sick, and have UTI-like symptoms if I don't actually have an infection. Neither do any of the doctors I've seen so far.

GI doctor said, "I think you need to see a Urologist. Would you like to see him?" Um, what kind of question is that? I told him that I don't want to see another doctor. Ever. But if he thought it was best, I would. He does think it's best. So I will. But I don't wanna. I'm pretty tired of being a patient. I kind of feel like I'm starting the whole "searching for answers" thing again. I know that this is hopefully nothing and not a big deal. I just have a little bit of battle fatigue. *Sigh* Hopefully doctor #13902 (actually more like #6) will have a magic bullet. ;)

But honestly, I'm so much better than I was... I keep reminding myself! Just trading my old lousy problems for new problems that aren't as bad! ;) And hopefully all this will soon resolve and I can find my "new normal." Yesterday marks two months out of surgery. I'm amazed at all God has allowed me to do since then - I am so much more functional than I was before. I mean, honestly, I was barely surviving before surgery, and now I'm actually living. It's fantastic!

I'm done with two of my classes, but have two more tests in the other class I'm in. I was originally going to take an incomplete, but the teacher asked me a week ago if I'd like to try and finish. Since I was feeling good, I agreed to try to learn six weeks of biochemistry in a week and take that test, then two days later take the cumulative final. That's a lot, but I felt like I could do it. Since I felt sick, however, I didn't get much studying done. My mom talked me into asking for an incomplete again. I feel like I'm giving up... but I just am not ready to take those tests. I may try to take one test, then take the final in January. It depends on what the teacher is willing to do.

Please keep my friend Steph in your prayers! Right before Thanksgiving, Steph had the same surgery as me. She's had a very rough recovery. A few days after surgery, she had to have emergency surgery due to complications. It's just been a rocky road for her. Unfortunately, she is back in the hospital with a bad infection and joint pain. Today she needed a couple of blood transfusions. Please pray for her recovery, and that God will give her peace, comfort, and relief from her pain and feeling sick - poor girl has been in the hospital since the beginning of November. That just drains your soul and is so discouraging. Steph is an amazing woman with a lot of strength and spirit. She just keeps on fighting, and it's been incredible to watch her persevering through all her complications. "I'm just trying to stay positive," she always says! But at this point, I know all Steph wants is to be better and home with her family. So please remember my colon-less buddy!

Hannah ;)

Burn away my pride/ Bring me to my weakness/ 'Til everything I hide behind is gone

A year ago, God once again changed my life's direction. I began the road of a UC flare that was sort of the beginning of the end. One day I'll write more about this flare and its implications, but basically, while there have been a lot of turning points over the last couple years, this was a pretty big one. This was when I really realized that UC was beginning to define my life. Until then, it was just a new diagnosis - I'd been diagnosed for just over a year - and so there was a lot of hope that things would settle down. I thought (and my doctors did, too) that we'd get this under control and I'd move on with my life. I'd get back to normal. But as UC reared its ugly head again, it dawned on me that this disease wasn't just going to go away and let me get back to normal.

For the first time, I understood "chronic illness" and put myself in that category. Before this flare, I thought I understood what UC was and wasn't. UC was NOT like getting strep throat - you're pretty sick, feel lousy, go to the doctor, get some meds, take them for a while, and get better. My perception was that it was sort of like having high blood pressure - you have to take medicine forever, but as long as you swallow those pills, it stays low. I just had to find the right combination of treatments, and my UC would get better and stay under control. But this flare made me realize that, no matter what treatments I tried, I would probably still be sick and in pain most of the time. That each treatment came with a list of side effects that was a new way to spell insomnia. I realized that I was in the awkward position of being close to the end of treatment options at age 21. That maybe this was as good as it was gonna get. I guess this is when my denial stage after being diagnosed finally ended.

At this point, God used UC to strip away my identity - who I thought I was - and taught me that His grace is enough, that power is perfected in weakness. I learned that my identity isn't "diver" or "responsible student" or "cool friend" or "strong person" or "smart" or anything like that but that I'm a child of God. A child - weak, dependent, trusting. It's been very painful to have so many things I loved deeply taken away from me. None of these things were bad, but I had let them take greater importance than God. They became a part of me - I thought they WERE me - but as God painfully stripped me of these idols, of my pride, I was left naked, weak, and saw myself as He sees me - someone who falls far short of the mark, in need of His help and mercy. Rereading prayers I wrote last year, I'm amazed at the complete brokenness, submission and humility before the Lord that I had. God brought me to a place where He made me truly willing to give it all up for Him. I'm challenged by that. I pray that that is still the attitude of my heart. He showed me that nothing is worth having in comparison to knowing Christ. He is truly the greatest thing.

Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in me. If UC has taught me nothing else, if I haven't learned anything else this year, I've learned that when I am weak, then I am strong. Christ has shown me Himself in these times of weakness, and I hope He's shone through my life for others to see. I am actually glad that He's walked me through these times. He seems more real to me than life itself, and pursuing Him is the only thing worth pursuing in life. I've learned to fix my eyes on Him. My prayer now is that I won't forget these lessons learned in the fire.

Hannah ;)

Infection: 2, Hannah: 1

Okay, so I shouldn't have said anything... the kidney infection is back. Dang it. But I got better briefly - that's why I have one point. ;) Wednesday I paid a social call to the doctor just to thank him for everything and show off how healthy I am. So I felt stupid when my symptoms started coming back that afternoon. Yesterday I had to call him and be like, "So... I'm sick again. Oops." He referred me back to the ID doctor.

The ID doctor was able to see me this morning (which is pretty fast! They had a cancellation, so they squeezed me in), so he is running some tests. The results will be back on Monday, and then he'll decide what to do. For now, I'll just keep taking my course of antibiotics. If there's a new infection, we'll probably have to use IV antibiotics to fight it, since the pills and shots have apparently not done the trick. If there's no sign of infection, then my GI doctor will probably have to get in on this and put in his two cents about what might be going on - ideas including a kidney stone or weird fungal infection (since my immune system is compromised) have been thrown around. But since I don't have a fever and I don't feel absolutely terrible or anything, waiting until Monday is fine.

I'm continuing to taper off steroids super slowly. Today I am finally below the dosage that made me crash about 5 weeks ago! I have 5 weeks left, then I'll be done forever! Woo hoo! Please continue to pray that this slow taper will be okay for me, since I guess my body just doesn't do steroids/steroid tapers well.

School is going well - I can't believe the semester is almost over! Amazing. I am done with one class, have to rewrite two assignments for another class, and I have two tests in my third class (biochemistry). I'll be done on Wednesday - just have to keep myself motivated to study hard until then! I am so thankful that God's allowed me to stay in these classes and get caught up. He has really paved the way for me in amazing ways. I think there were three days when I was really tired, and the professor would email us that class was cancelled! God is so neat like that - He is faithful to give us good gifts even in little ways. I even think I'm gonna make good grades in my classes.

My J pouch is continuing to spasm and stuff, but I've found some things that help. Twice this week, I've slept through the night without it waking me up! I keep hoping that the spasms will go away eventually. I'm just being patient. I emailed Dr. A about it, but he hasn't responded yet. But I think I'm learning to cope with it better.

Please pray that whatever is going on with my kidneys would heal up without a need for more tests or medicine... I would appreciate it. After everything I've been through, this is NOT a big deal, but it would, admittedly, be nice to get rid of this infection or whatever it is.

Hannah ;)

Simple Life

I am hesitant to say this, since it has proved so hard to clear up, buuuuut...

I think the kidney infection is finally going away for good! My back is not hurting, and the other symptoms are improving. And no fever, nausea, headache, and I feel good energy-wise! I was nervous because for the first part of last week, I felt "off," like I was getting worse again, but I'm feeling better now! Hopefully this antibiotic round will wipe it out for good!

In other news... I am reconsidering the postponing of surgery #2. I am feeling stronger and mentally, I think I can take it now... I just want to get this over with and done and find what my "new normal" will be! Yeah, it may be tough for a few months, but I can see the light at the end of the tunnel. I am not 100% sure about changing the time. Need to keep praying and see how God leads! It depends on my kidney infection, steroid taper, school schedule, and Dr. A. I'll meet with him in two weeks, and we'll talk about the timing of everything.

I am so thankful that I've been sick and gone through all this. I am in the incredibly weird and cool position of having been "chronically ill" and now getting healthy. How many chronically ill people can say that? I really didn't think that I would be this much better. I guess I forgot, in just a few years, what it felt like to NOT feel sick, exhausted, and in pain all the time. I can't ever take things for granted anymore.

The ability to go through an entire day without having to plan time to rest when I literally couldn't go any more. Knowing every day what I'm going to feel like. Not "crashing" anymore. Wanting to eat, three times a day, whatever I want. Not having to try to hide that I'm in pain or sick. Not forcing myself to eat, smile, talk, be social, etc. Not having to cancel plans because I'm curled up in the fetal position. Not having to struggle to stay upright. My brain doesn't feel "fuzzy." My joints move easily. My stomach works and doesn't hurt. I have energy. I keep telling you, you healthy people don't even know how amazing life is! I am so thankful that I have this incredible appreciation for things that seem simply mundane.

These things are all simple. I don't have any grand aspirations right now. I haven't done anything truly great since I had surgery. Enjoying my apples and my walks to and from school and visiting with friends and sitting in class without all that sick person mental and physical baggage is just an incredible joy and blessing. My life is truly boring and mundane right now. And I couldn't be happier. For me, it's better and more exciting than Disneyland to do "normal people" things.

Yes, I walk around with a bag attached to my stomach. And I think I'm developing an allergy to the adhesive on the bags, oh joy. Whatever. The J pouch is really bugging me again with spasms. I worry this could be the beginning of pouchitis (I PROMISE I didn't make that word up - it's where UC comes back in the J pouch Dr. A created to eventually serve as my new "stool reservoir" read: end of small intestine stapled where my rectum used to be), which could mean going back on some meds or having to keep Squirt forever. Hopefully this will improve again and at least I don't feel sick all over! I'll be on antibiotics for another week and on steroids for another 6 weeks. But then I'll be done.

I'm not saying these things to complain or whine. I'm not discontent with any of this. Overall, everything is going great, and these are just small annoyances. But I want to be totally honest. I traded UC for these things. It was a good trade, but it's not a completely perfect fix or anything. That's okay. Every day, I can predict pretty much how I'm going to feel. I'm not dealing with days where I can't leave the house because I'm too sick or days where I can't focus in class from pain. Contrast: On Friday, I went running! I didn't think I'd ever be able to do that again - I would have had to be close to a bathroom, have enough energy and less stomach pain, and my joints were too stiff anyways. Today I ate because I wanted to eat, not because I knew I should. I didn't need a nap. I didn't wake up feeling exhausted and achy. For all these things, the simple things, I am so thankful. Once I longed for life to never be boring. Well, folks, I'm pretty sure that it won't ever be! But I'm enjoying and appreciating the simple, boring, mundane things of life.

Hannah ;)

Two Apples a Day...

Keep the doctors FAAAAR away? I'm testing this theory. One a day wasn't doin' the trick; we'll see if the increased dosage helps! ;)

This weather is perfect for hot chocolate (3 mugs today!) and apples and hot sandwiches. So I'm enjoying food. This is the perfect time of year to need to gain weight, between Thanksgiving, the cold making me want hot chocolate, and Christmas coming! I'm a lucky girl! And - I'm back to my pre-surgery weight! Which isn't quite my "healthy weight," but I'm not really sure what that will be, since before I was sick I was a lot more muscular. Bottom line is that I am eating AND absorbing nutrients with no pain! And... loving it (10 points to whoever catches the reference)! Yay!

Yesterday I had a brief (less than 100 second) visit with the ID doctor for my kidney infection. It was so quick that the nurse actually wrote the prescription for the doctor after he left. That's legal. We think I'm improving - no fever and symptoms are lessening, although they aren't gone. So the plan is two more weeks on antibiotics (this will be my FIFTH round, not counting the other two antibiotics I got in the hospital for this infection) to make sure it goes away and stays away! I think it's a good plan. Die, infection, die!

Today I'm doing okay - feeling kinda draggy, but not bad! Still waaaaaay better than before surgery! The pharmacist (we're great friends, you'll recall) theorizes that this is probably not just from the infection, but also from the steroids. He thinks that the "blahs" probably won't go away until a few weeks after I get all the way off of steroids. He's probably right. So sometime in January...

I got a LOT done today towards getting caught up in school. I really feel like I can do it! I have a lot of work, and this week and next will be difficult, but I'm applying myself and God is enabling me to get stuff done! Yeah. I finished my make-up tests in one class, and talked to another professor for about an hour - he's helping me re-write my translation assignments, since I missed a lot of pertinent in-class time. Another test tomorrow, 6 translations due between now and next week, case studies due, make-up test Friday.... sounds like a lot. But it's under control. Wow, can you believe I'm back in school (well, in three classes, anyways) and actually getting caught up and everything? Praise God - I really wasn't sure if school would be at all feasible. Neither was my medical team. Haha. I told them that dropping out is just not my style. Comeback. ;) I'm thankful to God for allowing me to be so much healthier so this is possible. Just think - I've had an infection for over a month and I'm STILL exponentially healthier than I was before surgery! Amazing.

Could you please continue to pray that this infection will go away? That would be awesome. Also pray for my parents... they worry about me. ;) And I'm a bad patient, as we all know.

Hannah ;)