Simple Life

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

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

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

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

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

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

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

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

Hannah ;)

Two Apples a Day...

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

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

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

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

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

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

Hannah ;)

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 ;)

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 ;)

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 ;)

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 ;)

"Pyelo-freaking-nephritis"

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 ;)