Tuesday, December 29, 2009

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 ;)

Friday, December 25, 2009

"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 ;)

Thursday, December 24, 2009

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 ;)

Tuesday, December 22, 2009

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 ;)

Saturday, December 19, 2009

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 ;)

Tuesday, December 15, 2009

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 ;)

Saturday, December 12, 2009

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 ;)

Friday, December 11, 2009

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 ;)

Monday, December 7, 2009

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 ;)

Tuesday, December 1, 2009

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 ;)

Sunday, November 29, 2009

Monthandahalf Post Surgery Update

Hi, everybody!

No new exciting health news to report... guess I've just been too busy living life! ;) So I'm just going to update how ALL the post surgery stuff is going! It might be a little boring or gross, so feel free to skip today if you'd prefer not to hear it!

My J-pouch has been a little more "active" the last few days. Not sure what causes that, and it's not painful per se, just a little annoying, that's all. I hope it will adjust, since it is most active at night, which is disruptive for sleep. I have complete control over the J pouch, which is a good sign, I think. Stomach is great - eating anything and everything. Doin' my yogurt every day for the calcium and probiotic benefits. I am trying to train myself to like eating yogurt. No success so far, but I'll keep you informed. ;) All the UC pain and cramping is just gone. My joints are slightly stiff, maybe from the rainy weather (and I'm starting to s-l-o-w-l-y cut down a tiny bit on steroids) but nothing compared to how they used to feel! My incisions are healing up great - they are soo tiny - the biggest one is less than 3 inches long! The others are just miniscule.

Am I still happy I had surgery? YES! Even the bags and I have reached an uneasy peace, and taking care of them is easy and routine. My sole complaint is that Squirt is in-between barrier sizes. Barriers are like a band-aid that protects the skin around Squirt. The bag attaches onto the barrier. Since Squirt is oval-shaped (thanks a lot, Dr. A, for creating an irregularly shaped stoma), horizontally, he's one size, but vertically, another. So the barriers tend to be either too big (leaving some skin exposed, and therefore, it gets digested) or too small (so stuff is more likely to leak under the seal - not a full leakage, but enough to irritate the skin a little). I can't win. Grrr. I've learned good tricks for protecting the skin, which is good, and this is NOT a major problem, just a teeny-tiny annoyance. I will possibly put in a call to the ET nurses before I order my next batch of barriers, and see if they have any suggestions, as they are wise in the ways of stoma care. This small complaint is a far cry from bags leaking left and right and raw bleeding skin like I had about a month ago! See, look how far I've come (now I'm guaranteed a leak... better stop bragging)!

After my Dr. A follow-up, I was thinking I might want to keep Squirt forever, or at least post-pone surgery as long as possible. While I pretty much forget he's there most of the time, I'm starting to feel more ready for surgery #2 (and to lose Squirt, as cool as he is). The next surgery is something that I want. No, you can't even tell Squirt's there no matter what I wear. No, he's not a total pain to care for. No, I wouldn't be depressed if I had to keep him forever. No question, he is better than having UC. But - I am looking forward to being more, um, anatomically "normal"... at least externally. Inside, I'll always be "semi-colon," which is cool with me. I'm just ready to get all the being sick stuff over and done with! Ready to see what my "new normal" will be. I think it's great that I'm getting more excited about surgery #2 - means my body is healthier and my emotions and mind are getting re-fortified... now I just have to wait for 6 more months! I'll be super-incredibly healthy and mentally prepared by then, I bet.

I go back to the ID doctor tomorrow. I feel better than I did on Wednesday, but I still feel kind of "off." I don't feel awful, but I don't feel quite right. It's hard for me to tell exactly what's wrong. I'm not dying or horribly ill like I used to be, so I'm not sure if this is normal or not. Just have vague back and abdominal pain and feel slightly blah. After being so sick for so long, it's easy for me to ignore what my body is saying. So I can't tell how seriously I should take this. Just don't know if it's a big deal or nothing. Hopefully it's nothing!

I have a BUSY week of school coming up. I missed some class over the last week or two from this stupid infection stuff, so I have a lot of catch-up in addition to a bunch of stuff being due. I need to be diligent to work hard so I can get caught up! At this point, I feel like I'm just making excuses if I tell the professors that I'm still sick - I'm sure they are real tired of hearing that. And I am so much healthier than I was a few months ago. It's unbelievable. However, I just feel like I'm struggling to stay afloat in my classes. The kidney infection just dragged me down some, unfortunately. Hopefully the shots from last week combined with the break will kick all the way in and I'll have a fantastic week!

So overall, I'm back to life and look and feel just so much better than I did before surgery. I'm so thankful! It's a good feeling. No, it's a WONDERFUL feeling! Now if I can just kick this infection, I'll be beside myself!

Hannah ;)

Thursday, November 26, 2009

Thankful for no hospital!

Well, great news! I'm NOT IN THE HOSPITAL! If today weren't Thanksgiving, we'd have to make it Thanksgiving anyways, 'cause I'm so thankful to not be in the bad place. ;)

Yesterday I felt pretty awful. Still really nauseated, back hurt, headache, etc.I had the re-evaluation with the ID doctor and Day 3 of the shots. I was worried that the doctor would make me go to the hosptial since I was feeling worse, but my fever is gone and my labs looked okay, so he's giving me til Monday to get better! Yay for no hosptial! He did decide that I should continue the shots for two more days and get checked out by a doctor every day.

So this morning I had to go to the TCU doctor to get the shots. Poor guy. Yes, he has to be at TCU for football practice on Thanksgiving. That's sad.

Tomorrow is (hopefully) the last day of shots. Monday, I'll go back to see ID doctor again. If I'm still sick, he said it was time for "more intensive tests and treatment" which I think was a delicate way to say the H-word. I am feeling a lot better today, so hopefully that won't be necessary! This is just a bump in the road, but I'll get over it and be back stronger than ever, I'm sure. I'm still fever-free, and today has been much better - no headache or fever and the nausea went away by mid-morning. I did take two naps, though! My back still really hurts (where my kidneys are), but hopefully that will go away soon, too. I'm back on all the pain meds for it. Here's to hoping for a drug-free Thanksgiving next year!

I'm so blessed that I could be at home with my family. It was a fantastic day. Got to chill with my wonderful, wonderful roomies. Got to be with the whole loving family. Got to eat ANYTHING I wanted. Doctor's orders - "Eat a lot today. Eat everything" (Since I haven't been able to really enjoy the eating aspect of Thanksgiving for the last few years). I didn't eat tons by my pre-UC standards (which is probably a good thing - I have the appearance of self-control because my stomach is smaller now!), but I ate some of pretty much everything!

We all talked about what we're thankful for. Several of my family members mentioned stuff that had to do with learning to trust God or being thankful for people praying or helping through me being so sick. I feel really bad that my health has had such an impact on them. But at the same time, it's kind of cool to think that God can use even a rotten situation to bring others closer to Him, which has been my prayer all along. I pray that He'll continue to use me to honor Himself.

I have a lot to be thankful for. A lot.

Hannah ;)

Monday, November 23, 2009

Infection: 1, Hannah: 0

So... this weekend I felt pretty horrible. Fever, chills, nausea, kidneys and stuff hurt. Just not bueno.

This morning, I went back to the doctor. Surprisingly, all the lab and culture stuff from last week came back looking fine. That's good. But my vitals looked pretty bad and I'm definitely feeling worse. I've done a few rounds of antibiotics, and they clearly aren't working. The doctor theorizes that this may be because I'm immunocompromised. He told me that I needed to call GI Dr. and go to the hospital, which made me pretty sad. I pulled out the sad puppy eyes and everything, but he still said I needed to get some stronger IV antibiotics - I've exhausted all the strong oral ones.

He let me wait in his office while I waited for my GI to call back (his assistant eventually called me back around 4:30 today. No comment). Then after a little while (bless his heart), he took pity on me, and called an Infectious Disease specialist to kinda get an idea of what should happen next. Turns out ID Dr. had an appointment open at 1:30 and thought my complicated case sounded interesting. The doctor explained that I'd been in the hospital a lot and really didn't want to go back, and ID Dr. said he has an infusion clinic, so I could probably stay outpatient. This was the absolute best news I'd heard all day. This would probably mean getting a PICC line in (type of IV that goes into your heart) and driving down to the clinic twice a day to get the IV antibiotics. Not fun, but soooo much better than being in the hospital. Maybe those sad puppy eyes worked after all.

My dear mommy came and drove me to the ID doctor. Filling out paperwork at doctors' offices is always fun. List hospitalizations (ummm... all of them? Or just the "major" ones?). Check the following symptoms you have/have had in the last year. List medications you have taken in the last year. It's a lot to remember. The best was this:
First column said: Hospitalization, then it asked Reason, then it asked Outcome. So, for my recent visits in October, I put Hospitalized: October 2009, Reason: UC flare and total colectomy. Outcome:.... Hmmm... outcome. Should I put "Yes," as in, "Yes, my colon came out"? ;)

His nurse took my history. Poor lady. "Wow, you have a lot going on!!" Yeah... I'm just cool like that! Actually, this nurse was absolutely fantastic. Caring, funny, entertaining, knowledgeable, and good at giving big shots. She was great. Just the kind of nurse I would have wanted to be.

Also, today I discovered yet another benefit of no colon (recall my list so far: 1. No colon cancer, 2. No colonoscopies)! ID doctor tells me one of the antibiotics I'm on can cause a terrible infection in your colon. But since I have no colon, I can't get this infection. Woo hoo! ID doctor decided to try adding in a couple antibiotic shots for three days in addition to the pills. He'll reassess on Wednesday. If I'm running a high temp or not feeling better by then... I'll have to go to the "h-word" place. ;( But hopefully I'll be all better! I just have to get stabbed twice with big needles for three days (got the first two today). Pretty easy fix, if you ask me.

ID doctor also sent me for more blood work and a sonogram of my kidneys to make sure they are okay. So my mom and I spent all day running around visiting doctors and labs, but that's much better than being in the hospital! And no PICC line or twice a day IVs or anything. Praise God. I have a lot to be thankful for today! All I'm dealing with is a kidney infection. And thanks to nice doctors, I'm doing it outpatient. And I don't have UC anymore. And therefore my stomach and joints are better. The rest of my body will get there, too. It will just take a little while. If nothing else, God is certainly trying to teach me patience. Patience to wait and rest and heal. Hopefully I am learning! I'm very thankful for His grace today.

Hannah ;)

Thursday, November 19, 2009

Surgery #2 - Sometime in May?

So.. I've been thinking a lot since Tuesday about having the second surgery. Because of the infection and steroids (I think), the earliest Dr. A would consider operating again would be in January. Originally, he had told me I could have the take-down surgery 6-8 weeks after surgery #1. But we didn't really anticipate the problems I've had post-op. I think all these problems are related to how sick I was before surgery, and due to the steroids suppressing my immune system and my body's ability to heal itself.

I think I want to wait until after graduation in May to have it. I emailed Dr. A to ask about it, and his PA emailed me right back. She said that waiting is just fine. I didn't know if the um, plumbing and stuff that I have now would "last" that long, since it is designed to be temporary. But, apparently, Squirt and the unattached J pouch will be just fine until surgery in May.

I have a few reasons for wanting to wait until May. First of all, there's the whole missing school thing - probably 3-5 days in the hospital and 4-5 days at home. Then I can start doing stuff, but the reality is, according to Dr. A, that I will probably be living in the bathroom and dealing with dehydration, making school tough to impossible for a while. All this will settle down in three months. I don't really want to miss ten days of school, then possibly be in and out for three months. Been there, done that. Don't want to do it again.

I have some other reasons for waiting, too. Right now, I'm enjoying so much being healthy again that it would be very hard for me, emotionally, to go back to being an invalid and living in the bathroom, although it would be temporary. I know that it is just a stage I'll have to go through, but I don't want to do it now. Maybe I'm just being immature and avoiding the inevitable, but I just got off that ride, and I'd rather wait a few months before going on it again. I want to enjoy my last (Lord willing) semester of college as a healthy kid, not someone recovering from surgery and learning to deal with having only half of a digestive system. Being "normal" is so great right now. I can't even describe it. It's great.

Finally, I think it would be best to give my body more time to get healthy. I didn't get sick overnight, and I'm not going to have a healthy, strong body again overnight, either. Waiting until May will give me more time to get the steroids out of my system and get stronger.

I would ask that you pray for my body to fight off the kidney infection. I am not feeling very good, and I think that's why. I was feeling so bad that I didn't even go to classes this morning. Hopefully my body will rally and beat it! I've had this infection for three weeks, and today I feel like it's getting worse again. I'm sure I just need to wait and rest and it will get better. I just feel silly that I still have it. I'm supposed to be better, duh! My body didn't get the memo, I guess. ;) It's trying, though. Thanks!

Hannah ;)


Hi! This week is going really well. I'm kind of tired, but I think that's just a part of life! My roommate reminded me that "Normal people get tired sometimes, too." I am still just unable to get over how it feels to NOT be in constant pain! It is truly amazing.

Today I went back to the doctor for the kidney infection... I am not sure that it's getting better. He was all excited about the football game, of course, since he's the team doctor, and I told him just how great I feel and how I was at the football game and everything and didn't have to run to the bathroom at all for the first time in years. He was happy for me, but emphasized that I need to rest and take it a little easier and what-not. Direct quote: "Hannah, you have pyelo-freaking-nephritis!" That was his official diagnosis. ;) Haha. He also told me he can't believe I am finishing some classes. I just don't quite get it, though, when doctors and everyone tells me that - what exactly should I be doing? Sitting on a couch somewhere eating bon-bons and watching Lost reruns (sorry Sarah and Evan... I know this is how you spend your free time)? Not that I don't already do stuff like that... except instead of bon-bons I eat the chocolate and fruit my mommy sent me, and instead of watching Lost I read nerdy medical stuff. ;)

Mentally, I think my recovery would be not-so-great if I wasn't doing stuff. I am one of those people who gets really down if I have too much free time. Last week, staying in bed just about killed me, even though I was too tired to do much else. I just all-around feel better if I have stuff to do. And I'm really not doing much - it's just three classes! Nine hours. Of course, I'm having to make up 5-6 weeks of missed work in those classes... but still!

Anyways, the doctor is running some lab work "To make sure my kidneys are still working and stuff?" "Yes." He had a student there with him, and was like, "Um... this patient has a complex medical history..." I told him to just skip it and treat the infection. I grow weary of retelling my life story, which is getting longer and longer at this point.

Another happy thing: the lab work lady used to work for my old GI doctor, and now she works at TCU! We are great friends, since she got to do at least weekly blood draws on me for several months for that stupid chemo medicine I was on - the labs were to make sure my bone marrow and liver weren't shutting down from the toxicity of the medication! Ugh. Nope, don't miss those days. Anyways, we had a happy reunion, and she's glad to hear I'm doing better. She's been taking college courses for the past few years, and is hoping to sit for the Special Ed teacher exam in December! I'm amazed at her perseverence to work full time, take care of her kids, AND be pursuing her dream career. And it's been a long road, but she is so close now. She's great.

I also refilled my steroids. A little depressing to walk out with a bottle of 400 pills. ;( The doctor gave me a little pep talk about how I would be done soon, and how he was amazed at how well I've been handling everything and stuff, plus I got sympathy looks from Frank the pharmacist, which made it slightly better.

Hopefully the tests all come back fine and show that my body is beating this stupid infection. I don't feel super bad or anything, just slightly "off." I think that since I'm so used to being sick and pushing through it that I can't really "hear" if my body is telling me to slow down. I told the doctor that, yes, my kidneys hurt and I am a little uncomfortable from the infection, but it's truly nothing compared to stuff I've gone through. Even compared with how I felt last week, I felt far worse at least a few days a week for the last three years. I just learned, I guess, to keep going. Maybe now I need to learn to baby myself? I don't know. I'm a Hale. We don't baby ourselves much. It's probably genetic and therefore impossible to overcome. ;) The other thing that's apparently genetic is my verbosity. I didn't think I had much to say until I started writing this blog. Now I can't shut up. I write the longest posts ever. Sorry. Please, please don't feel obligated to read my ramblings! ;)

Hannah ;)

Tuesday, November 17, 2009

Dr. A and I reunite

Today was my follow-up appointment with Dr. A. His opener was, "May I just say you absolutely scared the bejeebers out of me on that Friday night after surgery with that crazy pain thing? I've NEVER been so scared and worried and freaked out about a patient! After I got the call about how much pain you were in, I couldn't sleep the rest of the night. I'm SO glad you're okay!!" He was glad that the pain is continuing to go away. I've had a few days where it has bothered me, but it is nowhere NEAR the intensity that it was when I was in the hospital. He is still pretty baffled about what caused it, but we are both very grateful that it's pretty much gone!

He told me that I look fantastic (why do I only get hit on by old doctors? No one ELSE tells me I look fantastic! *sigh*), and I've gained 4 pounds since surgery, which is great! He was pretty surprised at my level of functioning -- that I was able to go back to school so quickly, and he was amazed that I was able to walk to school. Actually, he wasn't thrilled that I had done so much so soon, but it's okay now, especially after my boring week of bedrest. He, um, examined the J pouch... from the inside... and reported that I will have a good outcome. Apparently it is forming or healing or whatever it does in a very good way. I dunno, but that seems good to me! I think perhaps I am starting to get used to the J pouch. Last night I only got up 3 or 4 times. Hopefully this trend will continue! Dr. A said he didn't really know what was causing the discomfort and need to empty it so much, but he said he thought it will improve with time. I'd appreciate prayers that it will!

I asked him when I could start working out again, and he rolled his eyes and said, "I knew this was coming." He said after Thanksgiving, but I negotiated him down to the week of Thanksgiving. I gave him my sob story about how I was an NCAA Division I springboard diver, and after three weeks inpatient with a bad flare, on TPN (being fed through a vein), and pancreatitis, I was medically disqualified, and now that I feel better, all I want is to be active and run again, which I thought I'd never be able to do because of the UC and arthritis... blah blah blah... He gave up. I won. ;) I don't really have a venue so that I'd be able to start diving again, but I miss running, abs, even weights, and my yoga class I started this fall!

Dr. A wants to do the second surgery sometime in January. I hoped to do it over Christmas break so as not to interfere with school, but he thinks it will be best to wait until January. I think that this is related to the slow steroid taper. Being on steroids makes you heal slowly, and increases the risk of complications and infections, like I'm experiencing now. He also told me he's not sure if I'll be able to do classes this spring. This was news to me. The second surgery will have a much shorter recovery than the first one: three to four days in the hospital, and four or five days at home. The difficulty is, Dr. A said, that for the first three months, I will literally have diarrhea every 15 minutes, and be dealing with dehydration and "leakage." After that time, my body will sort of settle down and get used to the new system. A good outcome is having 4-6 bathroom trips a day, with minor "leakage" from the J pouch only at night, but this will be reached only after several months.

Dr. A is not sure if class will be feasible for me during this adjustment period. I'm not sure, either, and to be honest, I'm pretty scared about this surgery. It sounds a little more bleak than I imagined. I had this surgery to get rid of the millions of bathroom trips and urgency and accidents. It's a little depressing to learn that this surgery won't be a perfect fix. I know that living in the bathroom again will be temporary, hopefully, but I'm not looking forward going back to that life again. It's making living with Squirt forever seem pretty attractive. Dr. A reminded me that the difference is that I won't be in a ton of pain or sick or arthritic. But he said that the reality is that life will be very tough initially after surgery.

I'm pretty sad about that right now. Also, not sure how all this will work. Maybe I could put off surgery #2 until after I graduate in May - I didn't ask Dr. A about this, but I don't see why not. Just means keeping Squirt for longer, I think? Only problem is that stuff gets a little hairier with insurance, since mine is through TCU and is up in August. Maybe that's a good option, though? I don't know... just thoughts.

Whatever happens, I just want my life to glorify God. Being back at UTSW today reminded me of all the visits I've had... all my inpatient time in October, my Remicade treatments, tests and scopes and scans and blood work, depressing visits with the GI. On the way to the doctor or infusion center each time, I'd be filled with hope that I'd get more answers or that this treatment would do the trick or keep me healthy or ease my pain. It just reminded me how much I've been through and how far God has allowed me to come already. I'm incredibly thankful for that. If I need to take the semester off or something, once again, it's that investment of a few months so that I can be healthy for the rest of my life. I don't know exactly where God is taking me or where He wants me to go, but I pray that I keep following Him every day. I pray He'll give me the willingness to go through whatever else I need to go through. I read Isaiah 43 today, which is a great passage, and I was just reminded of God's infinite love and care. He truly protects His people so that He is honored. And He is always with me every step of the way. Here are verses 1-3:

"But now, this is what the LORD says—
he who created you, O Jacob,
he who formed you, O Israel:
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.

When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

For I am the LORD, your God,
the Holy One of Israel, your Savior..."

God has brought me through so many rivers and fires already, for His name's sake, and I know that He'll continue to guide me! I pray that He continues to make it so clear that this is His work, not mine or a doctor's. May He be honored through this.

Hannah ;)

Monday, November 16, 2009

"Open your window and look upon/ All the kinds of alive you can be"

Hi everybody!

I'm still having trouble with the J pouch. The last several nights, it's woken me up at least half a dozen times, which is getting a little old. I am really hoping this will settle down! I'm starting to feel a little sleep deprived... although mainly that's my fault for staying up til midnight... oops. Fortunately, I caught a lovely two-hour nap between classes today! That was very nice. Hopefully the surgeon will have some good suggestions or something tomorrow. I'm also hoping that he'll let me start working out again! I want to get this body healthy and strong again, and just enjoy being alive!! Now that I am getting good nutrition and my body isn't simply trying to survive, I am hoping to get and keep the energy goin'! See, I'm getting better -- while I'm still kinda wiped from the adrenal stuff/infection/being sick for a few years, I'm starting to itch to move and be that hyper kid I used to be. Unfortunately, my current roomies did not know me pre-UC... they are gonna be so unprepared for ADHD Han-nah. Haha. Poor them.

I hope that the kidney infection is on its way out. I am feeling a little draggy today, but so, so much better than last week. Draggy is much better than run over by a truck. ;) And all of this is so much better than dealing with UC.

Wow, isn't this weather beautiful? I just feel so alive. ;) Walking home from school with the crisp air and listening to my iPod (yes, Daddy, sometimes when I'm walking to and from school I engage in this anti-social behavior. But it's like having a personal soundtrack for your life! So fun!) while basking in the sunlight = greatness. I decided to make a brief detour on the way home and picked up the fixins for hot chocolate and marshmallows! Yummy! I love fall and I'm happy to get to enjoy it! What a blessing. I observed a lot of fall weather from my hospital bed, and I've got to tell you: while I had a nice window, experiencing it is a lot more fun.

More exciting news I forgot to mention: this weekend's storm is the first one in years that my joints haven't "predicted" by becoming more stiff and sore than usual. My joints are still doing fantastic. Walking does not hurt. Sitting in class does not hurt. Writing isn't hard. I can open jars easily. I don't "oof!" when I change positions. I don't feel even a little bit stiff although the weather is terrible for joints. This may be because I'm still on steroids, which are very powerful anti-inflammatories. But I'd prefer to think (and my surgeon says that chances are very good) that the arthritis is totally gone and that it will stay gone even after I come off steroids! Although, on the down side, now I have to check to decide if it's gonna be cold or rainy. I'm pretty sure that this is an inconvenience I can live with. ;)

I am just seeing God's goodness everywhere today, and I'm so thankful to Him. While I don't feel great yet, I am not in pain anymore. Wow. I still can't believe it. Haha. Ironic: I just sneezed. Now it hurts where they cut me open. But I mean, I feel just so much better. I know I keep saying that. I just still am trying to wrap my mind around it!

I will update tomorrow after my appointment with Dr. A, but now I have to go and write my infamous list of technical questions so I can drill him tomorrow on what he's gonna do to me next time he cuts me open.

Hannah ;)

Sunday, November 15, 2009

Go Horned Frogs!!

I think the higher dose of steroids is starting to kick in. I am starting to feel less like I got run over by a train. Friday, I went to classes (okay, actually, I just had ONE class! The rest got canceled!), turned in two assignments, made up a test, talked to a professor, bought groceries, walked home, and then felt like I had been run over by a bus. This is quite an improvement. Everything still goes black when I sit up or stand up (in case you are reading this, don't worry, mom, I'm standing up very slowly and I'm not holding my breath) and my heart is still kinda racing, but I am much more functional and feel more energetic, which is fantastic. Saturday and today have been even better.

I know the higher dose of steroids has kicked in for another reason: the midnight munchies. Both Friday and yesterday, I was not really hungry and felt sick to my stomach all day, probably from the kidney infection or antibiotics, so I wasn't able to eat much. Then right before bed, I was suddenly starving for the weirdest things. Pretzels, peanut butter, chocolate, apple, and scrambled eggs later... haha midnight munchies. If I start inflating, don't judge me. ;)

I'm also having some issues with my J pouch - just feels like it's spasming a lot. It will be interesting to see what the surgeon thinks about that on Tuesday. It's rather uncomfortable, but hopefully this is just an adjustment period and my body will soon get used to everything being all moved around and stuff.

On Friday, I called the doctor and asked when I should start feeling better from the kidney infection. Apparently, several days ago. Oops. Since I'm not feeling better, he decided to change my antibiotics to something stronger. Hopefully that will do the trick. So far, I feel about the same, but I am still fever-free, which is a good sign. Still doin' yogurt, cranberry juice, lots of fluids, baking soda baths, etc. to try to kill this infection.

When I picked up the prescription, the pharmacist said he'd missed me for the last month, so he asked my doctor where I'd been, and found out that I'd had surgery. He is a fantastic guy, so nice. I've missed him, too! We became quite close when I first got diagnosed and had to take 12 pills a day of this medicine he had to special order. It came in bottles of 100, so I had call in once a week so he could special order it. This was in addition to the million other meds I was on at the time. Ya know those big weekly pill containers with a spot for each day? I used to fill up FOUR different ones, for morning, afternoon, evening, and bedtime pills, and still couldn't close the lids on the little things 'cause they were so full of pills. Frank was the lucky guy who got to fill and refill all those prescriptions. He always gives me a special smile. I'll never forget the time I had to pick up a gallon of prep for a scope, and he couldn't fit it through the little slot, so I had to go around back. Good times.

Anyways, he wanted to know how I was doing after surgery and was very very sad for me that I have to be on steroids for so long - my GI called in that prescription. I told him I was sad about that, too, but was feeling so much better overall, so no complaints! This is probably the first time in ages I've been there NOT filling a prescription for pain medicine. Steps in the right direction.

My happy news is this: GO HORNED FROGS!!! What a game! TCU beat Utah last night. I felt good enough to go to the game, which involved standing for hours, jumping up and down and storming the field at the end... it was a great game and a fantastic night. I got pretty lightheaded by the third quarter, and felt lousy all last night after the game because I probably overdid it, but I can't even describe how good it felt to get out of the house and just be a normal college kid yelling for my team at a football game. This sounds weird, but crowded events like that just weren't possible or created a TON of anxiety for me when I had UC. I needed to sit really close to an exit so I could dash to the bathroom every so often, praying I made it in time and that there was no line. Last night, it would have taken me about 20 minutes to get out of the stands and to a bathroom, and the lines were unbelievably long, but it was no issue whatsoever since I no longer have UC!!! Yay for Squirt. ;)

Also, I was able to go to church tonight. It was fantastic to get to worship and fellowship with my brothers and sisters in Christ. God is so good.

A few prayer requests:
  • Please continue to pray for my family -- they are still pretty concerned about me. Pray that they will be able to just rest in God's peace and that any worry or sadness would be replaced with joy and faith! Also, my brothers both have a cold... no fun. Pray that they will heal up fast!
  • That this kidney infection would go away quickly without causing any more problems.
  • For the J pouch to not be so uncomfortable or for me to get used to it.
  • Praise God that I am feeling much more functional and that the increased steroid dosage is helping! What a blessing to be able to just live life. Pray that God will give me grace to deal with being on steroids for a few more months.
  • Praise God for the encouragement He provides through others who love Him from all over the planet. To each one of you - I am so sincerely thankful for your prayers and encouragement. I wish you knew how much it means to me and my family!
Hannah ;)

Saturday, November 14, 2009

A month after being disemboweled

So... it's been a month!

I'm so glad that I had surgery. I honestly don't know where I'd be if I hadn't. I didn't blog about this, because it unsettled me, but during my hospitalization before surgery, my GI talked to me after the scope showed some signs that my colon was beginning to heal in places. He said, "If you want, we can try to wait until December to do surgery. We can pump in IV steroids, IV cyclosporin, give you nicotine patches, we can infuse you with Remicade every couple weeks and try to keep you nourished and hydrated. Maybe you can make it for a few months."

Now, I am NOT a quitter. I've never been a quitter. But I knew that my body had been through the wringer, and I thought it would be wrong to pour a bunch of poison into my body that might or might not actually help. My doctor speculated that even though my colon was possibly healing, the nerves were so damaged from the inflammation that it could no longer work properly and just caused pain. They can't really treat that. I didn't think I would be a good steward of my body to take the chance of tanking my other organs just to try to put off the inevitable for a few months. What would my quality of life be like? Before surgery, on morphine and pills, I was still in so much pain and in the bathroom so much that I couldn't sleep and any attempt at eating was near disastrous. Add into that the IV steroids, and I get a little crazy. Add in the high doses of cyclosporine, and I'd be throwing up, and be lookin' at kidney and liver damage. Remicade makes me feel pretty worthless for a few days, too, and no one really knows what the effects of getting it that often are. Nicotine patches? No thanks. Not looking for a carcinogenic addiction. And I would be needing continuous rehydration, since my body couldn't hang on to anything I ate or drank. My goal of having surgery in December was so I could finish the semester. Sounded like I'd have to be dragging an IV pole and a puke bucket to class with me, if I could get out of bed.

I'd had enough. It was time. I knew my body just couldn't do it anymore, and God had given me a total peace about going forward with surgery. My GI has always been fantastic about laying out every single option I have, which I appreciate, even if the options are scary or something most doctors wouldn't suggest. He just wanted to let me know he wasn't giving up on me. That if I wanted to hang on to my colon for a little longer, he was willing to fight and give it a last-ditch effort. But I was ready to get the failing thing out of my body before I got any sicker. He always supports my decisions, so he let me know that the surgery might not fix everything, but it did need to happen, and he thought sooner was certainly better than later.

I'm a month out, and I still have some issues going on, but it's still early in the recovery process. My surgeon said that it will take a year after the second surgery for me to fully recover and reach my new level of functioning. It will be exciting to see where that is. I just need patience to wait that long and allow my body to rest and heal. I had written out some little whiny things about the small post-op issues and trials I'm having, but I'm saving those for another time. Today I just want to be thankful. No, things aren't perfect. They never will be. I'm missing half my digestive tract and my immune system is still tanked and my adrenal glands are asleep. The last two things will gradually improve and get better. In a year or so, my digestive system will learn to sort of compensate for the lack of colon. But no, I will never be "normal." That's fine with me. I'm content with being able to function, eat, and have so much less pain. Normal is so boring anyways.

I feel like God has given me a new shot at life. It's like a mini-picture of salvation. A month ago, I was not dead, but I was pretty darn sick. Now I'm alive, abundantly alive, and able to do things I never thought I'd be able to do again, like go eat out with friends (instead of just watching or eating, then getting sick), or climb up stairs without pain, or not have to rush to the bathroom a dozen times a day, or fall asleep without curling in the fetal position with a heating pad on my stomach.

It's a new life, and I'm unbelievably thankful for it. But while life is good, this experience has taught me to not get overly attached to or enthralled with life. Our life here may be pretty good. But it's not our home. We shouldn't get too comfortable here. That's why God sends trials. I've been so blessed to have these trials. They have given me a new and incredible level of intimacy with God. Many verses have garnered new meaning as God etches them into my soul through painful times. I am much more in tune with the Spirit and I'm amazed at how clearly and incredibly I can hear, feel, and see how He communicates and works and moves and reveals His will. I've come to know Christ in His suffering. I cling to the Father and trust with faith as His child. I've learned a lot about what life is NOT about, and a lot about contentment, thankfulness, true faith, and dependence. I don't believe I'd have seen the depth and richness of knowing God without being sick. Trials are like a spiritual growth spurt. The pain of trials is like growing pains and stretch marks -- not pretty or fun, but necessary so that you reach a new level of maturity.

Hannah ;)

Thursday, November 12, 2009

"You know the first thing I'm going to do when the curse is lifted? Eat a whole bushel of apples!" -- Captain Barbossa

True to form, now that the "curse" of UC has been lifted, I am enjoying crisp fall apples... yum (or should I say "Arrrrr!"). I have not yet eaten a whole bushel. But I'm working on it.

Well, I started the higher dose of steroids. So far, I still feel pretty lousy, but it's only been two days. I don't really feel like I'm getting any better from the kidney infection. I'm slightly less dizzy, but I've pretty much been in bed since Monday, so that's probably why. I didn't sleep well last night just from being uncomfortable and I've been having bad headaches, too. I'm getting a little stir-crazy, so I'm trying to do some homework, but I am too lightheaded and tired to work for long. The good thing is, I've still been able to eat well most days, which is still very exciting for me.

Other good thing: the doctor emailed me, and the plan is for more like nine weeks of steroids, not 13. That's a month less - yay! I will also follow up with my GI right before Thanksgiving, so he can tweak that plan as needed. On Tuesday, I follow up with my surgeon. Right now it seems I have more doctor's appointments than social engagements, which is so lame. Hopefully quite soon that ratio shall reverse. I do appreciate my doctors, but it has been complicated to be sick. I need a secretary. Or a case manager. Each doctor oversees something different, so none of them can look at the big picture.

Case in point - the story of this infection: I have an infection, so last Tuesday, I went to the doctor. Since I'm on steroids, which my GI doctor oversees, and the infection affects how those need to be dosed, he also needs to know. So I call the GI doctor, too, who ended up being out of the country, so I talk to another GI doctor. I got my lab results for the infection last Friday, so the Health Center told me to come in, but by this time my regular doctor was out of town, too, so I have to talk to ANOTHER doctor, who tells me to follow up with my regular doctor on Monday. But he tells me that I also have to contact my surgeon to let him know that I have an infection. On Monday, I go back to see my normal doctor, and he says, "You know, Hannah, you need to just pick one doctor and stick with them. Otherwise, it's dangerous - you get people prescribing you all kinds of stuff or you fall through the cracks."

Um, I know. You are preaching to the choir. What else am I supposed to do, though? I need a secretary, like I said. Sadly, this is far from an isolated incident - I've had to do this for the last few years. If you have a chronic illness or multi-system disease or problems, you understand how this goes. The PCP sends you to a specialist, who sends you to another specialist, and if you get the flu, you see the PCP, but he is afraid to treat you, because you're on all these meds he's never heard of. But your specialist doesn't treat the flu, and even if he did, you couldn't get in to see him for a month. Or if you have side effects from meds that the specialist prescribes that affect other body systems outside his specialty, he has no idea what to do, but your PCP won't touch you with a ten foot pole. Thankfully, I'm almost done with this! ;)

I'm having trouble today believing I'm going to be better. I am having so much less stomach pain than before surgery (although I'm starting to have a little - hopefully just from antibiotics) and eating is no longer associated with pain, which is fantastic. But my energy level is very low, I am having headaches every day, my body is hurting (hopefully just kidney infection and/or steroid stuff) and I just feel lousy. I know I'm just a few weeks out of surgery, fighting adrenal insufficiency and a bad infection, but I was hoping I'd be feeling like superwoman - running laps and saving the world and stuff - by now. And I'm not. Today I started to think about the last conversation I had with my GI doctor before surgery - about how this surgery was the right choice, but it might not fix everything. Maybe I'm just making this stuff up or exaggerating... maybe I'm just a bit of a paranoid hypochondriac. I don't know. But I know I don't feel quite right. So tomorrow, I'm going to pay a visit to the doctor just to make sure everything is okay. Hopefully I just need to give the steroids and antibiotics a little longer to kick in, but I'd rather get it checked out to be on the safe side.

In the meantime, I'll continue to crunch and munch on that bushel of apples.

Hannah ;)

Tuesday, November 10, 2009

Steroids and Steroids and Steroids, Oh My!

Today was a fun day of bed rest... pretty boring, actually, but I didn't feel like doing anything, so I just didn't do much.

I called the GI doctor today - of course, he's out of the country for three weeks -- he'll be back next week. I like and trust my GI, and I get a little tired of telling my life story to strange doctors (well, all doctors are a little strange. What I mean is, doctors who are strangers to me... my daddy told me not to talk to them), so I wasn't overly excited to hear he was gone. His nurse said my GI has called in from across the world a few times, and he has always asked how I'm doing. I don't know if I should feel flattered or embarrassed. I'm goin' with flattered. ;)

I called because I will be in serious trouble if I stop taking steroids tomorrow. I'm already crashing hard and it would be a big jump to go from my current dosage to nothing. I spoke with another GI doctor - the one who talked me through my first Remicade treatment. He's a super nice guy, and very knowledgeable, so while I still would much rather have spoken to my real GI, this was okay. He is concerned about my ability to fight the kidney infection because of all the steroid stuff.

Short science lesson: everyone's body produces steroids every day. When you're sick, your body makes more steroids to help you get better and cope with the physiological stress of being sick. When you take steroid medication long-term, your body stops making its own steroids. So, if you get sick, your body doesn't kick in to help you fight it off. You may require "booster" doses of steroids to help your body cope. Also, the doctor says, some special people, like me, have bodies that "forget" to start making steroids again when they come off long-term steroid medication, since the natural steroids have been suppressed for so long. So all this results in the withdrawal symptoms I've been experiencing. You can actually go into shock from this, especially if you have an infection - perhaps why I've been feeling so crummy?

So, the new plan is not very fun, but I'm on board, I guess. I'm going to increase the steroids until the infection is gone (which hopefully will help my body kick in and fight the infection), and then slowly taper off over a period of thirteen weeks. Yes, thirteen (13)... which seems like forever to me. I've been on a lot of lousy medications, and this is the one I hate being on the most, but a few positive things:
  • Usually, as I taper off, all my UC symptoms come back with a vengeance, so I yo-yo up and down with steroids for ages and have to throw in some new immunosuppressant to get off this one without bleeding internally to death or something. This time, I don't have that problem, praise God!
  • I hopefully can avoid all the withdrawal symptoms by tapering off this slowly. That means no more crashing!
  • The last nine weeks will be on such a low dose that (I'm hoping) it won't affect me or make me feel weird.
  • This is just a part of the investment so I can be healthy for the rest of my life.
  • This will (Lord willing) be the (drumroll, please) LAST time I'll ever have to take steroids. Ever. Can't wait for that day to arrive. Please start planning a party. You are all invited, and it's gonna be a doozy. ;)
Hannah ;)

Monday, November 9, 2009

"You thought by now you'd be so much better than you are... Hold on/ One more time with feeling/ Try it again/ Breathing's just a rhythm..."

Hi everybody!

Sometimes in recovery, it seems like you're taking two steps forward and one step back. And... you guessed it... in classic Hannah form, I've taken a step back. I spent all weekend resting and sleeping to try to get rid of the kidney infection, to no avail. The good news is, the doctor did NOT send me to the hospital today! And the antibiotic I started on Friday should wipe out the pyelonephritis (fancy name for kidney infection) eventually. I'll be on the antibiotics for another 10 days... ugh. I'm really paranoid that the antibiotics will somehow mess up my stomach and make my UC symptoms come back. I know that this is a slightly irrational fear, but I'll be glad when I can come off the antibiotics. Lots of yogurt and probiotics and stuff will help. This infection is something I can't mess around with, though.

Between that and the steroid withdrawal, I feel pretty awful. My heart rate is really high and my blood pressure is really low. So I feel nervous from my heart pounding all the time, but also very dizzy and shaky since I have no blood pressure. This is from taking a lower dosage of the steroids, and it makes me feel lousy. I also feel wildly emotional... which is also from the steroids. Additionally, I am sporting a fat little chipmunk face. Cute. I really hate steroids, but must admit they have a purifying effect - they bring my sin to the surface and help me to see myself as I really am - a sinner in need of God's help every minute to keep that sin in check.

This week, I'm allowed to go to class as long as I get a ride (no more walking) and stay on strict bedrest whenever I'm not physically sitting in class.

I'm getting a little tired of still being sick. The doctor was like, "Again?" as I walked in. I promise, I'm trying as hard as I can to be healthy. I want so badly to be better, to be normal... but I'm not yet. Historically, nothing has ever been easy or smooth about my recoveries, for some reason. Like I told my mom during my third hospitalization in October for the mystery pain thing, "I can't even get sick right!" While I want to be better right now, like I've said before, this is an investment - a little rest and feeling crummy now, then I'll have the rest of my life to be healthy.

Please pray that I would recover quickly from this infection and that my kidneys would not be damaged.

Also pray for me as I continue to come off steroids. I was hopeful that this time wouldn't be as bad... but it looks like it will be. I don't know why, but my body has an extremely hard time bouncing back from steroids. Pray that God's grace would be enough - physically, emotionally, and spiritually (as well as ecumenically and grammatically? 10 points to whoever catches the reference) and that I would not be discouraged, but fix my eyes on Him and show Christ to the world by my life.

Please continue to pray for my family. My parents made a trip down to Fort Worth late last night because I had a minor emergency with some post op stuff and the doctor on call recommended I go to the hospital to get checked out. Thankfully, everything resolved on its own and no trip to the ER was necessary... but it still killed their night of sleep. Pray that God would give them peace and rest.

Join me in praising God for the incredible love and support that my family, friends, and roommates continue to show. They are a HUGE encouragement to me and I'm so blessed by each one. Also praise God for the work He is accomplishing through this trial.

Hannah ;)

Friday, November 6, 2009

One Month

A month ago today, I had spent the whole night in the bathroom. My stomach hurt so badly that I couldn't stand up straight. I hadn't eaten more than a few bites of cookie or rice for several days. I hadn't slept through the night for weeks because of pain.

A month ago today, my sweet roommate drove me to the doctor first thing in the morning. I was so lightheaded and dehydrated that they had to transport me in a golf cart to get IV fluids because I couldnt' walk across the street to the health center.

A month ago today, the concerned doctor asked me what they usually do when I get this sick. He wasn't sure what else could be done. I was already on a very high dose of steroids, which are a stop-gap measure, and they weren't working.

A month ago today, after I got IV fluids, I tried to eat a bowl of soup and was in the bathroom for the next hour.

A month ago today, our water got turned off, leaving us without running water. As you can imagine, I chose to NOT stay at home. ;)

A month ago today, I sat on the floor with a friend as the doctor called me and said that I'd need to be admitted to the hospital and that I would leave without my large intestine.

A month ago today, I miraculously made it to a Bible study and was reminded by a friend that my focus needed to be first and foremost on glorifying God.

A month ago today, I made the hard phone call to tell my parents what was going to happen. They gave me their complete support and help.

A month ago today, I could not imagine a life that didn't revolve around UC. I didn't even dream of the incredible increase in quality of life I'd have by today.

A month ago today, I learned what it looks like to have peace that surpasses all comprehension guarding my heart and mind in Christ Jesus.

Hannah ;)

"And He will give you the desires of your heart"

So... good news! Yesterday afternoon, I found out that the Dean approved the selective Q! That means that I can drop two classes and remain in the other three. Like I mentioned earlier, this is very unusual to allow. So I think this is God leading pretty clearly! I'm also not so far behind as I thought in the other three, so catching up won't be impossible or incredibly difficult. I also met with Financial Aid to see if my scholarship can be extended (again...) for the spring semester. They told me it was quite unlikely, since I've already received an extra semester of aid, but that I should submit a letter. God has both opened and closed many doors in my life over the past few years, and it will be exciting to see how He decides to work with scholarship stuff.

This week has sort of reminded me of Psalm 37:4 - "Delight yourself in the Lord, and He will give you the desires of your heart." God has just made things incredibly smooth in so many unbelievable ways. While God doesn't always work this way in my life, it's been such a truly awesome blessing to see Him so clearly at work to give me such good things this week. I am just blown away by His love and I honestly feel like He's spoiling me just a little.

In other encouraging news, I talked on the phone with an ET nurse (who specializes in helping people with stomas) and she gave me some suggestions to try for getting the bags to stick on better and how to protect my skin. Thankfully, I haven't had to change the bag since my 'roid rage post. ;)

Unfortunately, I haven't been feeling so hot the last few days. The sharp pain came back again and I'm definitely feeling that I'm taking less steroids - makes my heart race, and I feel very dizzy and tired (the technical term for how I feel is "zonked"). Also... I just got off the phone with the Health Center... and apparently I have a pretty intense kidney infection goin' on as well. Intense as in, I have to take my temperature every four hours and if it's at all elevated, I have to go to the hospital. Rats. But, the cool thing is, God is once again paving the way for me. I felt low on energy yesterday, and I ended up not having class! And today, one of my classes was cancelled. I'm just trying to take it a little easier. I realized that on Tuesday, for instance, I walked about 4 miles - to and from campus twice and from one end of campus to the other. That's a lot, I guess, for someone who just had surgery. So I'm trying to just make one trip to campus a day.

While I feel a little crummy today, I know that the steroid feeling usually lasts for a few weeks after I stop taking them. I can expect to feel this way for the next two-three weeks, but then I'll be DONE! Yes, I have an infection, but it will get better. The pain is continuing to lessen -- although the last few days it's bothered me, it's so much less now than it was last week. And I don't have to deal with continuous pain in my stomach and joints. Hopefully, within a few weeks, I'll be better. This is so exciting, because for the past few years, there hasn't really been a light at the end of the tunnel. There was always the knowledge that whatever treatments I was on would cause a lot of side effects and wouldn't really help or would soon stop helping and I'd relapse. That every day I would wake up in pain and sick. Never knowing if I'd be able to make it through the day. Soon, yucky days are going to be the exception rather than the rule. I'm so thankful for that.

Hannah ;)

Wednesday, November 4, 2009

A 'Roid Rage Rampage and Reminder to Myself

WARNING: In case you couldn't guess from the title, this post is gonna be a little ugly. If you don't want to hear about it, don't read it. No worries, I won't be offended. Only read on if you are ready to hear a bit of frank talk about some gross stuff.

Okay, you've been warned. I'm not kidding.

Still reading? You're brave... here goes.

So... I'm incredibly frustrated. I've had to change Squirt's bag a million times since yesterday afternoon. Here's how it works: there is a sticker type thing with a hole in the middle that fits around Squirt to protect my skin from my poo (which, since I have no colon to absorb water and digestive enzymes, is VERY caustic). there is a little round flange on the sticker. Then there is a bag to collect my waste that attaches onto the flange sorta like a tupperware lid snaps on. I'm having problems with the sticker not sticking so well. That means that my waste leaks everywhere, makes a huge mess, and digests my now raw and bleeding skin. I don't really know what I'm doing wrong, because I'm not doing anything different. Until yesterday, the last few bags I've had have lasted for about 4 days (they are supposed to last from 3-5 days) without any leakage problems. Yesterday, I used up all my bags because they kept leaking. I'd take the leaking bag off, gently clean the skin around Squirt while Squirt um, lived up to his name, make sure the new sticker was shaped properly, attach it and hold it in place for a few minutes, and finally, snap the bag on. This takes about fifteen minutes. Shortly thereafter, it would start leaking. By yesterday night, I'd put on the very last bag I had and had an unenviable pile of laundry.

No problem. I ordered a bunch more bags a week ago, and they arrived at my parents' house on Monday. Last night, when I realized I was on my last bag, I called my mom and asked if she'd be able to do me a huge favor (as I am carless this week - lent it to Andrew since I don't really need a car, and his is still broken) and drive the package down to me. She agreed. She arrived this morning when I had a two-hour break, and I opened the envelope... and it wasn't my order. It was a free sample. It was also the wrong size - the hole in the middle of the sticker is too big, so it won't protect my skin properly and will leak. So now I'm on my last bag, and I have no back ups. Oh, and this bag was beginning to feel like it was going to leak.

I called the company concerning the whereabouts of my order. Unfortunately, they apparently do not accept my insurance, so they didn't mail my order... but they neglected to inform me of this. I was a little confused because I had talked to them numerous times over the past few weeks, and was assured that they did work with my insurance. They had called and said they had confirmed my insurance and told me what my copay was and everything. I had given them my debit card number and ordered and was told I should have everything by last Friday at the latest.

Now, however, they won't send it to me unless I pay like $200! If you consider what I'm using these supplies for, the price seems a bit ridiculous. I got off the phone and started bawling... I just was so tired of dealing with everything. Between Squirt leaking everywhere, having a UTI, and the newly created J-pouch giving me a little trouble (feels really full and uncomfortable, and I have to um, empty it, which is like pooping, several times a day, but since they messed around so much down there, I can't tell what to um, unclench, which is rather amusing), it seems like my life is revolving around not being in control of my bodily fluids and dealing with them and the discomfort that creates. It's just no fun and gross and humiliating and I'm coming down off steroids, so I'm incredibly emotional and just can't handle it today.

I pull myself together, and my sweet mom drives me back to school for my next class. In the middle of class, I look down... and yes... yes, it is true. My bag, the last bag I have, is leaking all over the place. I am so, so thankful that my dear Mommy was still around. She picked me up, and took me home. I changed my bag AGAIN (using the ill-fitting bag) and I found a pharmacy in Fort Worth that sells ostomy supplies. She took me over there and I was able to find and purchase some supplies at a fraction of the cost that the company was going to charge me.

While we're at the pharmacy, I start feeling really shaky and light-headed and sweaty... fortunately sat and put my head down and didn't pass out. Yes, folks, between this and the emotions, it's safe to say that the steroid withdrawal has officially begun.

Because of the bag change, and pharmacy detour, and the dizzy thing, I arrive half an hour late to my next class. How do I explain this to my professor? I just didn't say anything. I have no idea what I'd tell her.

So now, the bag I put on this afternoon is beginning to seep stuff onto my skin, which is really raw. This feels rather uncomfortable, and is the precursor to a leak, I have learned. I know I should just change the bag... again... but I just don't want to deal with it. I mean, I'm going to go change it right after I post this, but I am just so tired of dealing with this. Peeling off the sticker and changing it will just destroy my skin a little more. And I have no confidence that the new system I put on will actually stick. Oh well. It took me until I was two and a half to get potty trained, so there's a learning curve here with this, too, I'm sure. If you would, could you pray that God will help my heart? I am clearly struggling a bit with my attitude and emotions. I guess this means I'm probably angry with God again. Also, if you think of it, could you pray that God will allow the bags work a little better?

Don't get me wrong: I have no regrets about having surgery. I woke up this morning feeling well-rested, in zero pain, and hungry! Before surgery, I can't remember the last time any of those things happened. I feel so energetic and I can eat and I can live life without pain and it's amazing. But the reality is, I've traded a disease involving pain, suffering, and sickness for an altered lifestyle with some inconvenience and sometimes, like today, humiliation. I think it was a good trade. I think it's totally worth it. But that doesn't mean that today was fun or easy.

I guess that I just have new battles to face. And it's what I'll do. Keep fighting. God will allow me to figure it out and make it work, just like He's, at times, allowed me to keep diving and going to school and live and put on a happy face when I've been up all night being sick and hadn't eaten anything solid for days. Just like I fought through a three-week hospitalization from a horrible flare plus pancreatitis and returned to TCU the first school day after being discharged. Just like I dove at a meet an hour after getting discharged from the hospital for an iron infusion because my blood counts were so low from internal bleeding. Just like I've made A's on tests when I've been so dehydrated and in so much pain that I had tunnel vision and had to focus on not passing out. Just like I would do a dive, go heave in the bathroom from medication so toxic you have to wash your hands after touching it, and come out and still throw my back and gainer two and a half off 3M. Just like I made it through organic chemistry labs and coaching diving during an arthritis flare where I literally could barely stand and couldn't so much as grip a pen.

I mention all these things, not to brag or highlight my stubborn stupidity, but simply to remind myself that I've been through much, much worse things than I went through today. This is going to be my new normal, and it's much better than the old normal. It's just different. I've had to push myself in very hard ways for the last few years. Now I have to learn to discipline myself emotionally and spiritually and in other ways. It will just take a little time to figure out. God, who has brought me through so very much, will bring me through this as well, and will use it for my growth and His glory.

I've mentioned before the reminders to myself that I keep on my desk. One of them is "Trust God in big AND little things." For me, it's easy to fully rely on God when I literally need His strength to remain conscious or stand up or get out of bed. I have no other choice. But sometimes, with the little things, like the leaks and a company bungling my order, I have a much harder time trusting God, believing that this is a part of His sovereign plan for His glory, and reacting in a way that honors Him. This is why God reminded the Israelites over and over again not to forget Him in the good times, when all was going well. God recognized our tendency, as humans, to trust in ourselves and in others when things aren't so very bad. But it's so crucial to trust God in the little things. It's radical and different and a great testimony to others if I can trust God with my emotions and my bag changes and not become angry. I failed at that today. I want so bad to honor God especially with the little things. I pray He'll forgive my falling short today, and that He'll renew my mind to trust in Him fully... even as I deal with poopy stuff. ;)

So today wasn't that bad. Really.

Hannah ;)