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 ;)

Tuesday, November 3, 2009

Back to School!

So I'm done with my second day back at school! I walked from home to school and back yesterday and today, and I'm feeling... great! Is this how normal people feel all the time? Wow. I just keep waiting to wake up and feel terrible again. I can't believe this is real. ;) I am so thankful, but still a little bit in shock. I can't believe this will last. I feel like I've spent the last few years trying to survive life one minute at a time. Now all of life seems like a blank, open book. I can imagine the future and it's not so scary. I'm not worrying about tomorrow or making any grand plans or anything -- just excited about the possibilities that life holds since I'm going to be healthy!! I continue to pray that God will just glorify Himself through me and my life!

Today I went to the doctor - I'm still fighting a UTI (got it a few days after surgery. I was treated for it, and it got better during my last hospitalization, but it came back on Friday), but otherwise I'm doing well! This doctor has been so supportive and helpful through everything, and he was really happy to see me look like I wasn't dying. Haha. ;)

Yesterday I met with all but one professor and with the dean of my college. A few of my professors (and I agree with them) think that I've missed too much class time to complete their courses. One professor wants me to take an Incomplete grade -- I will finish as much work as I can, and in the spring can attend the portions of class that I missed. Then I will take one of the tests to complete the course. And two professors think that, while it may be rough, I can catch up in their classes. When I spoke with the dean, I requested to selectively "Q" (which, I believe, is like a withdrawal) out of two classes. This is very, very rare to allow. He didn't give me a definitive yes or no, but he wants to talk to my professors, Campus Life, and then to me again, and then he will make a decision. Please pray that God will reveal his will through the dean's decision. If he says no, then I will need to either try to finish everything or drop out of everything. Neither of those seems very palatable to me, but if that's how God leads, then that's what I'll do!

This afternoon, I'm going to talk to the last professor. I've done a lot of work in her class, but it's a seminar/discussion type class, so she is one of the professors who would prefer if I could Q out of her class. I feel bad that I've missed so much. I have tremendous respect for this professor and have greatly enjoyed the class, so I'm sad that this is a class I'll probably have to drop.

Tomorrow I start my last week on steroids! I'm very excited to stop taking all these pills and stuff. I'd continue to appreciate your prayers especially after I get off steroids, because I tend to really have trouble when I come off them. I get really dizzy, shaky, have no energy, and feel just awful. I don't think this happens to everyone... I'm just special. Maybe this time will be different because I won't be sick when I'm coming off them! I sure hope so. But this is several days down the road, so I won't have to deal with it for a while. God will give me the grace and strength to make it even if I have a hard time again.

Okay, I'm gonna go eat lunch! Yummy. ;)

Sunday, November 1, 2009

Waiting for the Next Shoe to Fall

Today I moved back in to my house in Fort Worth! Correction: Andrew and Joseph loaded up all my stuff and Andrew moved me back in. What great brothers. Love them! Already miss the family, but somehow at the same time, just thrilled to be back with my sweet roomies. Oh the paradox of college life...

So... I'm back here in Fort Worth, but I'm honestly not exactly sure what I'm doing. I am pretty sure that I won't be able to finish the semester. I am just realizing how much class I've missed. I've been in bare-minimum survival mode all semester. Any semester that starts two days after you got out of the hospital with an unresolved medical problem is bound to be interesting. Even before I missed 5 weeks, I was just barely staying on top of class work, so I am extremely behind.

This makes me feel really irresponsible, like I should have been more on top of my homework and studying all this time. What was I doing this semester? I was always "resting" (i.e., being lazy). I should have worked harder. What did I do in the hospital for nearly three weeks? Didn't study much, that's for sure. I'm frustrated with myself for not being more diligent all semester, but at the same time, when I did study, it was not very productive. I can count on one hand the number of nights I actually slept more than a few consecutive hours or days when I ate more than one decent meal or didn't feel like I was about to pass out or wasn't doubled over from my stomach hurting. I was in the doctor's office at least once a week, and the H-word (hospital) came up every single time. So I don't know if I should feel guilty or not. The thing is, I've been living sick for so long that I don't know what's realistic to expect and to achieve. But at the same time, I shouldn't be excused from anything or be a special case or something because I'm sick. That's so lame. And deep down inside, I know that I tend to be lazy. Surely there were some days when I should have gotten out of bed and done some real work. I don't know... it's hard to know. School is something where God helps, but I have to be faithful to put forth the effort. I don't know if I've done that or not. I can't tell if this semester was Him putting limitations on me and making it impossible, or if I was just being lazy and He wanted me to be diligent and push through it.

I don't know what happens now or anything. I am going to talk to all my professors over the next few days and see what their thoughts on the matter are. I am getting less-than-encouraging emails back so far. My ideal would be finishing three out of my five classes. If I can do that, I will still be able to graduate in May. If not, then I will have to graduate even later than that. I'm just starting to realize that this will be hard. Very hard. I need wisdom and faith... so I'm asking God for that. I know that all this is in His plan. I'm not disappointed -- except with myself a little -- and I'm not depressed or angry about this at all. I'd love to see what God has in store for me. I honestly have no idea what it is! But each day, I pray He'll give me opportunities to shine for Him - maybe even as I talk to my professors. Please pray with me for God's direction in my life and that I would glorify Him no matter the outcome. I'll let you know how tomorrow goes - gonna try to attend my 4 classes that meet tomorrow and talk to some professors.

Hannah ;)