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Thursday, December 30, 2010

The Return of the Ab Four

Wednesday was another day full of doctor stuff! I got thoroughly ultrasounded for literally an hour and a half. It actually ended up being rather uncomfortable, which I had not at all anticipated. I didn't realize how sore my ribs are from arthritis, so having a probe being pushed over and over them for a long time was not so fun. Also, I'm pretty tender in my lower abdomen, so I felt pretty beat up by the time they were through with me.

The ultrasound tech was really sweet, though, and like everyone these days, seemed rather shocked at all that I've been through. I got a chance to talk to her about what God has done in my life through this, which was neat. She didn't like what she saw, so she called in a doctor, and the doctor looked, too.

Next I went over to ID doctor. If you will recall, I was less than thrilled with the care I've received from him. I was pleasantly surprised today. He spent a lot of time with me, listened to what I had to say, and answered all my questions. He also spoke on the phone with the ultrasound tech about my pictures. I am very thankful for all of this!

Just like Monday's appointment, this was more news I didn't want to hear. First, the ultrasound confirmed that I do indeed still have a bit of colon or J pouch left. Again, this is highly concerning to me for a number of reasons. As far as the rest of the ultrasound is concerned... they are really not sure exactly what's going on. But it seems I still have the Ab Four (my abscesses). I have several areas of fluid collection in my abdomen and pelvis. The most significant ones are in the spot where I'm having pain. Based on my symptoms and the ultrasound, they believe, but aren't entirely sure, that there are also some fistulas (abnormal connections) between my intestines, whatever is left of my colon, and my uterus. If this is truly the case, these tend to be quite complicated and would require surgical repair.

The main concern and danger to my health is that it seems that the abscesses/fluid collections are being caused by a fistula between my intestines and abdominal cavity... basically a teeny, tiny leak. It's got to be a tiny leak, or else I would be WAAAY sicker than I am. But it's enough of a leak to cause the fluid to collect, keep my white blood cell count elevated, give me low grade fevers, etc.

So... for now, the plan is to go on a powerful antibiotic cocktail and reevaluate the fluid collections with another ultrasound in two weeks. It would be wonderful if the fluid would decrease or go away. If not, we will do more testing with all kinds of dyes and stuff and MRIs to try to determine where the abnormal openings and connections are. Then they can determine how to best go about fixing this. The ID Doctor thinks that this will take quite a while to figure out, and that I'll probably be stuck on antibiotics for some time. Also, as long as this persists, I shouldn't drop down on steroids or do any immunosuppressive treatments for my arthritis.

Please pray for protection for my body as I am going on antibiotics that are very rough on my system... after just one dose, my tummy began feeling upset. I'd really appreciate prayer that this whole situation would somehow resolve and it wouldn't even be necessary to do all the testing, treatment, and surgery. I truly never, ever want surgery again. On the other hand, it would be so great to get this resolved. Please also pray for my family and I to have a proper attitude and perspective as we try to process all the new information we've learned this week. We continue to try to make the wisest decisions possible about my care, and we really need God's wisdom to know the best things to do.

God is good, and I see His goodness in so many ways, even though Wednesday was a rough day. ID doctor's good care, the kind ultrasound tech, a family who loves me and cares for me, good friends who check up on me and listen to me... I could go on and on. But mostly, I am thankful for the hope I have that will never disappoint, as Romans 5:5 says. Hope for health, hope for good doctors, hope for getting better... all those hopes can and will disappoint me, because they will fail. But my hope in Jesus Christ, the hope I have that I have a restored relationship with God, that I have the Holy Spirit, that I experience the love of God, that Christ's death made all of this possible... that's a hope that will never let me down. It's a hope that I cling to in the midst of difficulties. It's a hope that allows me to rejoice even in my sufferings. And what a blessing that is.

Hannah ;)

Wednesday, December 29, 2010

Disconcerted

Hope everyone had a very merry Christmas! Yesterday I had an appointment with my GI doctor. It was rather disturbing and raised more questions than it answered... bottom line is, he does not think that the abscesses are the cause of my pain and high white count. He thinks I have some systemic autoimmune thing going on (hmm... I think I may have heard that before!). More concerning to him is that I continue to "poop" stuff from where my colon/j pouch/rectum used to be. He examined me, then dropped the bombshell.

Apparently, I still have a few inches of rectum left. This means that... my UC could come back at any time in that area of tissue. He was concerned that that was the cause of the bleeding, etc. I don't think it is, but the room was pretty much spinning when he told me that I could get UC again. We discussed this possibility in detail with Dr. A before surgery, and therefore decided to remove EVERYTHING down there to eliminate the chance of that happening. Evidently, however... Dr. A did NOT remove all that he said he would. I am beyond shocked at this... I really don't even know what to think or say. It is really just overwhelming to me to think that I could get more disease again in an area that was supposed to be removed.

Also, I have some other weird stuff happening in my pelvis. Tomorrow I'm having a couple ultrasounds to try to define my current anatomy and figure our what exactly is going on. I also will see the ID Doctor. Basically, a day of fun and games, haha!

GI doctor told me that he thinks all these issues may require surgery of some kind or another to mend. But I really don't want surgery and no one wants me to have surgery again! So we're going into all this testing knowing that I will probably end up choosing to just live with my issues rather than risk another surgery. I'm disconcerted and baffled by yesterday's news... it may sound trivial and silly, but hearing that there's a chance of my UC coming back AGAIN has really shaken me up. I am so thankful that God is in control of all of this, and that I can trust Him, and that He is doing everything right!

Spurgeon said, "The Lord's plants can and do flourish even when there is a drought. A godly man often grows best when worldly circumstances are daunting." I pray that through this, God will grow me closer to Himself and use me to impact others!

Hannah ;)

Wednesday, December 22, 2010

More Doctor Frustration

Okay, I reread my post from Monday... I'm sorry I was so grumpy! Things are all about the same - tired and really hurting, but still working! I'm going to try to drop down on steroids again tomorrow... we shall see how that goes!

Yesterday, I talked with GI Dr's nurse because I ran out of Zofran (magical anti-nausea medicine). Nooooo! ;) I LOVE that stuff; it's better than crack. It just makes my tummy feel happy all over. She promptly called me in a whole bunch of Zofran with three refills. It was a good day. She asked how I was doing. I was like, "Um... since you asked..." and told her about the continuing UTI symptoms and issues with the abscesses. She was all concerned and said she'd have GI Dr call me the next day. I reassured her that nothing acute is going on; nothing has really changed since November... but it hasn't gotten any better, either.

GI Dr called today. When I told him about the pooping stuff, he said, "Miss Hale, that should not be happening." Well... yeah. He was slightly aghast and wanted to know what Surgery thought of this. I told him that they are kind of shrugging it off. He kept emphasizing that this isn't normal and he's sorry that everything has been so messed up with me. He charted my labs, and it's pretty clear that my white count has been creeping back up since I got off antibiotics. Seems to me that the ID Dr told me he would call me if my white count was elevated... I am so not impressed with him. Anyways, GI Dr thinks that the abscesses aren't gone/are getting worse again, since I'm having pain and problems. But since I'm not running a fever, we're gonna hold off on doing anything for now. He did tell me I can increase my bladder numbing medicine for comfort until we figure out what to do.

I was supposed to return to see ID Dr again this week, but getting an appointment has turned out to be hugely challenging. I called several times over the last two weeks and they never got back to me. Finally, I talked to a lady yesterday... turns out he only sees patients on days when I cannot get off work. I really don't want to go back to see him, since he did not listen to me the last time I was in the office. And he keeps ordering labs, but doesn't actually look at them or treat me based on their results. It really seems like some kind of infection has been getting slowly worse over the last three weeks, but he either thinks I'm fine or isn't paying attention to the labs. Bottom line is that I still don't have an appointment with him. But I don't think that the appointment will actually be helpful, anyways.

I am still having a bad attitude about doctors in general, and the ID doctor and surgeons in particular. ;) Seems like they mess up over and over again and simply aren't providing good care. I am at a loss for what to do about it, but I am thankful for GI Dr keeping tabs on me and stuff. Mainly I just wish I were healthy and wouldn't have to deal with all this stuff... but that's just silly. I know that God has me in this circumstance for a reason - for His glory and my good - and I'm trying to rest in that.

Hannah ;)

Monday, December 20, 2010

Crash and Burn

Well... so... I was doing so amazing...

Unfortunately, I've sorta had a bit of a crash and burn.

On Saturday, I felt pretty shaky and dizzy during my graduation. Probably wasn't the smartest day to take the lower dose of steroids that day, but that was how it worked out. Sunday I was tired, but okay. Still, every night, my body starts hurting really bad and I can't seem to get back on top of the pain. Last night was no exception, and I couldn't sleep.

I was supposed to work over an hour away from home early this morning, so my dear mommy very kindly offered to drive me. Good thing! This morning, I was so dizzy and nauseated and hurting and lightheaded and exhausted that I couldn't see or stand up straight. Don't tell my endocrine doctor... but yeah, I totally took a bunch of 'roids to get my body going again. And literally ate salt. And then I felt MUCH better. Most amazing of all, God allowed me to survive a long day at work. Oh, and I also ate half a jar of green olives. ;)

So, it is not unreasonable to say that the steroid taper is just not working out so well. I'm going to try again in a few days, but now I'm scared. ;( I mean, I took 1/6th less of my daily dosage every other day. That is a miniscule change. But somehow, my body is not likin' it.

I'm also having issues with the abscesses, I think - feeling like I have a UTI, needing to "poop" stuff all the time, having pain where the abscesses are. But I have no idea what to do, since we are choosing to not treat the abscesses unless I spike a fever.

I am incredibly frustrated with this situation, especially the having to run to the bathroom part. As I've said before, I've had two huge surgeries that were supposed to fix this problem. The surgeons have taken a very relaxed attitude about this issue. They act like it's normal and no big deal that I'm pooping blood and pus from an orifice I am not even supposed to have anymore. I am very frustrated that they continue to minimize my concerns... Dr A just smiles at me patronizingly and says, "This is normal. We need to not freak out about this. It will go away on its own. If for some reason it's still happening after Christmas, then we can talk about it again." I know that this is not normal. It doesn't take a medical degree to know that. And now it's Christmas, and it's still happening. Can't we fix this, folks?!?

At the same time, however, I am extremely reluctant to let them touch me ever again for another surgery. This situation is really challenging, and it's hard for me to have the correct attitude about it. I can no longer trust the surgeons... they have been wrong about so many things, yet they are unwilling to admit that they don't know the answers. And they don't listen to me or trust my judgement when I tell them that something's wrong with my body...

Okay, sorry. Rant is over. I want to be wise and make good decisions to take care of the body God has given me, but I don't want to have anger in my heart towards my doctors. And I am really struggling with that. So, my answer for now was to cancel my January appointment with Surgery. It conflicted with work and I just can't deal with them right now... we shall see what happens and what comes out of this ugly mess. My trust is in God, not my doctors... good thing, or else I would be pretty bitter! I was promised a cure when I started this surgery journey in October 2009... God has certainly taken me down a much different path than any of us would have anticipated, but it has all worked out for His glory and my good.

Hannah ;)

Saturday, December 18, 2010

18 December 2010

Five and one-half years.

Eleven semesters.

Over 20 hospital trips.

14 weeks spent in the hospital.

Innumerable doctor visits.

Dozens of missed classes, tests, assignments.

Several "Incomplete" grades.

One change of major.

Three classes dropped due to illness and surgery.

3.884 GPA.

18 December 2010: One graduation ceremony.

I am so thankful for everyone who has helped me get here today! Primarily, I am thankful to Jesus Christ! Without Him, I can do nothing. And I truly mean that.

Then, to all my professors, coaches, advisors, and staff whose constant encouragement and flexibility made this possible! They were willing to let me think outside the box and be creative to fulfill course requirements in unusual ways and at different times than the rest of the class. They accommodated me in innumerable ways and cared about me as a person, not just a number or a student.

Next, I'm thankful for my family, friends, roommates, and teammates for their help and support. I never would have made it without you all.

With equal parts of joy, relief, and thankfulness,

Hannah ;)

Friday, December 17, 2010

Prayers for Bryan

This week has proved to be challenging. I'm still really hurting, but I'm able to stay on top of it okay with my meds. Except at night. I'm having trouble getting comfortable at night. It's just so weird 'cause I can't even really pinpoint what exactly is wrong - just my whole body hurts. I dunno what it is, but I sure wish it would stop! ;) I went to the chiropractor, which helped a little bit, but not much.

My tummy is still doing so well! It hurts off and on some days, and I have a bit of nausea, but it is so much better!! I am really, truly eating at every meal, which is an accomplishment! Honestly, I still feel weird eating sometimes. After eating sporadically for the past several months, it seems like pure gluttony to eat three times a day. Often, I don't feel hungry even when I know I need to eat, which is weird. I'm still working on trying to get my body to tell me these things. ;)

I also WENT DOWN ON STEROIDS this week!! Just a quarter of a pill less - and I'm only taking the smaller dose every other day, but this is the first time that my body has felt ready to drop since August. I am sooo happy that my body is handling this okay so far! I still have unbelievably far to go until I'm on a "normal" steroid dosage, but hey, progress is progress! Praise God.

Please pray for my friend, Bryan Kervin. I've mentioned him before, I think - he was a fellow TCU athlete with UC. He had the J pouch surgeries. This week, he got pouchitis and wound up in the hospital for several days. He plays in the Blue Jay organization. He was supposed to go to spring training next month, and I don't know if this setback will rule out spring training for him or not... UC is a terrible disease. I know that life isn't fair, but this just so wrong. Bryan has worked so hard and overcome tremendous odds, only to have disease flare up yet again. It just breaks my heart for him, and for everyone else whose lives have been changed by UC. I know that God has used these circumstances for good in all of our lives, but we have simply GOT to find better medications for this disease. And we've got to find some way besides radical, life-altering surgery to treat us when medications fail.

I don't shamelessly plug very often, but please visit www.riseandconquer.org to see how Bryan is using UC to help others. I've been blessed by Rise and Conquer with hospital visits, flowers, and financial support to help me buy my meds. This is a foundation Bryan started that's dedicated to helping people with UC and Crohn's, a sister disease. I'm proud that I've been able to participate with them by raising funds for research and to send kids with these diseases to camp, and I've been personally helped by Rise and Conquer. Maybe one day, people won't have to suffer from these terrible diseases...

Hannah ;)

Sunday, December 12, 2010

Called by name, I am His

So... this week has been very tough. I've been really hurting - to the degree that I get very shaky. And I have not been sleeping well. When I can't sleep, I have a very difficult time functioning. And it was a long week at work. So... yeah. Tough week.

I went to the pain doctor on Wednesday - my appointment with Dr. Pain got rescheduled, so I was seeing a different doctor. He was a slightly bitter, middle-aged guy in cowboy boots. Cowboy Dr walked in and said, "Golly, girl, I was reading your chart... whatcha got left in your guts that they haven't taken out?" ;) We talked for a while, then he said, "Why're ya shakin' so much?" I told him I was really hurting this week for some reason. He gave me "a lil somethin' to get you through the holidays:" some VERY strong meds. I've never taken any pills that are this strong! Then he asked me if I'm on any meds for stress and anxiety. I told him that I wasn't particularly stressed or anxious. He replied, "Well, I would be if I were goin' through what you're goin' through!" I'm thankful that God has blessed me with supernatural peace, as well as such amazing support from my family and friends - without Him, I would not be able to handle this. And without y'all, it would be much harder.

Anyways, this week has been a challenge on a lot of levels. My stomach is doing well, which is wonderful, but I am so frustrated that I'm having so much pain again. Thankfully, my "holiday treat" meds help, but they are so strong that I can't really function if I take them. And it's hard because I was doing so well and not really needing my pills, and now I'm getting worse again and needing stronger stuff. Thankfully, next week will be much lighter, work wise, which will be helpful.

I'm also struggling mentally and spiritually with some stuff. I've been meditating on Isaiah 43:1-3- "Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, the Holy One of Israel, your Savior..."

It's amazing that I am God's - that I'm His child, that He redeemed me. But knowing God doesn't mean that our lives will be perfect. Being God's child does not protect us from having to face terrible and hard things. God acknowledges that we will have to walk through waters and rivers and fire. None of those things is pleasant to experience. But He promised that He will be with us. We will face troubles, but God will not allow them to overtake us, define us, or destroy us. We will emerge from the waters and the fire, and we will not be burned or drowned. We will remain His children, because He who called us is our Savior.

Why don't we need to be afraid? It's NOT because God won't allow anything bad to happen to us. He says "WHEN you pass through the waters," "WHEN your walk through the fire." He is essentially promising that very bad things WILL happen to us. The reason we don't need to fear is because of who God is. He is the God who redeemed us - bought us - and is our Savior. We are His, called by name, and He is with us.

Hannah ;)

Monday, December 6, 2010

Monday Morning Musings

This weekend has been a bit of a "crash" weekend. As you well know, everything I do must be done in the hardest way possible. So of course, in true Hannah form, I got a sore throat the night before my final, haha, so I've been trying to get rid of this little cold. Actually, it's kind of wonderful to be sick. Because I know that it will soon go away and I'll feel better!

Since Friday night, I've been hurting A LOT, which is not so fun. Makes it hard to sleep through the night. I've been pretty miserable. So, I've just been laying around with my heating pad and fuzzy blanket! Sadly, I have to go to work...ugggghhh it will be tough while I'm hurting this much. But I am thankful that I GET to go to work and that I'm able to do so.

Now that I'm done with physics, I'm going to finally start tackling the list of thank you notes I need to write from my hospital stuff. Gosh, you people are just so nice and send me cards and flowers and books and all kinds of stuff that it's gonna take me forever to catch up! ;) What a wonderful problem to have - I am so blessed!

The doctor appointments are finally starting to slow down... maybe 3 every two weeks, and I only have two more appointments between now and Christmas! I'll have just 3 doctors to see in January! Woot woot!

Hannah ;)

Friday, December 3, 2010

Thanksgiving

Aah... sorry it's been a while since I posted! ;) And sorry that the last post was sorta grouchy. Although, really, this blog is about honesty, so I figure if I'm not "real" on this blog, no one would read it! ;)

I had a WONDERFUL Thanksgiving. Truly wonderful, surrounded with every member of my family. And I ate. A ton. That was good, too. ;) I feel kind of weird saying how thankful I am to be able to do normal stuff like get up, get dressed, walk down the stairs, eat, sleep through the night, not be in the hospital, etc. This makes it sound like I wasn't thankful when I was not able to do those things. But I was still thankful even then, and being able to do all those things is just icing on the cake! God never changes. His love for me never changes. And He is still good, even in the hard times. He is just giving me extra things to smile about right now. ;)

I'm doing okay! My mom commented that I'm kind of having one symptom at a time. She's right. One day, my stomach won't empty all day. The next day, my stomach will be fine, but my joints and muscles will hurt really bad. The next day, that pain is better, but I'll be shaky and dizzy. It's really wonderful that it's not everything at the same time! But I do feel kind of like a hypochondriac since it's something different every day! ;)

Today I followed up with the ID doctor. I was a little frustrated. He types the whole time I'm talking but didn't actually listen to anything I said. I know that he is charting. Believe me, I understand computer charting. But you should still take time to listen and answer questions. He ordered new labs without looking at the old ones. Our entire interaction was only 5 or 6 sentences, then he left. Basically, the abscesses SHOULD be gone at this point, but we really can't know for sure without doing another CT scan (which we are hoping to be able to avoid, since I'm at serious risk because of the radiation exposure thing). Since I'm not spiking high fevers, he thinks I'm fine to be off antibiotics (YAY!). I have been running low grade fevers several days a week -like 99.5 - not a "real" fever, but enough to make me feel a little crummy! But this often happens to me when my autoimmune stuff is flaring, so it's hard to say what, if anything, is going on. And ID doctor really didn't answer any of my questions, which was annoying.

Happiest news of all and huge giving of thanks: today I finished the last final of the last class from last semester.

I am done with college.

I have finished my degree.

I wasn't sure that God would allow me to accomplish this goal!! I'm so incredibly thankful for His grace and perseverance and strength that He's given me to complete this last course. This spring was so humbling as I was completely unable to make it to class, focus, or study most of the time. I realize that this degree is truly a gift and provision from Him, not something that I did. I am so thankful to God and to everyone who's helped me get where I am now.

Not being one to sit still.... Up next: teaching myself Organic Chemistry II and studying for the MCAT.

Hannah ;)