Sunday, November 29, 2009
Thursday, November 26, 2009
Monday, November 23, 2009
Thursday, November 19, 2009
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! ;)
Tuesday, November 17, 2009
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:
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.
Monday, November 16, 2009
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 weather.com 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.
Sunday, November 15, 2009
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!
Saturday, November 14, 2009
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
Tuesday, November 10, 2009
- 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. ;)
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..."
Friday, November 6, 2009
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 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.
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.