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Tuesday, January 31, 2012

The Closer

So... I went to see Dr. Saturday yesterday. He examined my wound and started making noises like "hmm" and "interesting." Not being able to see his facial expression (or the wound...), I wasn't sure what this meant. Finally, he looked up.

"Well, that looks at least 50% better, if not more."

Beautiful words. My wound is finally healing. Surgery to close the wound is off the table.

Again, he believes that it's more than coincidence that my wound started to improve two weeks after increasing  my methotrexate. It's suppressing my immune system (and therefore my IBD) enough that my wound can heal. Unfortunately, I'm nursing my fourth cold in two months (I hadn't had a cold for over three years prior to starting the meth shots!), but it is a small price to pay for avoiding another surgery that might or might not work. Plus, it helps my arthritis.

Dr. Saturday looked me in the eye and said, "Wow. This has been SUCH a struggle. You have been through so much."

I told him that he didn't know the half of it, that he is my relief pitcher who came in in the ninth inning. He laughed hard. When I recounted this to my dad, he commented that I should have said he was my ace closer. ;)

I don't even have words to express how thankful and happy I am that my wound is improving. I did mention  to Dr. Saturday that he told me that the healing process would take something like 3-6 weeks. "Well, with you, we should have known better," he commented, "Of course your body does things its own way." Ain't that the truth. ;) Well, whatever it's taken, I'm glad that, as my wound care nurse commented so many months ago, hopefully I'm getting to the tail end of my problems.

Hannah ;)

Saturday, January 28, 2012

Seven Months and Four Miracles

Today marks seven months since my last surgery... seven months of wound care, dressings, salves, powders, bandages, tape in places it shouldn't be allowed to go, gauze, cauterizations, and only being allowed to take a full shower twice a week... Seven months of living with an open wound.

It also marks seven months of being free from the pain and sickness of abscesses, being free from the ulcerated, inflamed intestine Dr. Saturday removed. Seven months during which I have gained 15 pounds, because my body can absorb nutrition, because I am no longer constantly nauseated, and because eating does not cause pain anymore.

During my long, slow healing process, I've been thinking about four of the miracles that Jesus performed during His time on earth.

The first is "my" miracle. I truly feel like it was written just for me. Mark 5:25-34 describes a woman "who had had a hemorrhage for 12 years, and had endured much at the hands of many physicians, and had spent all that she had and was not helped at all, but rather had grown worse" (Would you not agree that there's a parallel or two between her and me?). When she saw Jesus, she thought, "If I just touch His garments, I shall get well." She touched Jesus and "immediately the flow of her blood was dried up; and she felt in her body that she was healed of her affliction." Jesus told her that her faith had made her well and that she was healed. Mark 5 is like an Oreo, and this miracle is the white frosting filling bookended by the chocolate cookies of another miracle. Before this miracle, an important Jewish man was entreating Jesus to heal his sick daughter. A crowd gathered around Jesus, and that's when the woman touched Jesus' cloak and was healed. In the midst of a crowd, when He was on His was to heal the sick daughter of an important man, Jesus took the time to stop to speak to, care for, and heal a woman of faith. My Savior is never too busy, and I am never too far gone for Him to show His love and His power and that He is a rewarder of those who seek Him.

The second miracle asks "why?" Jesus and His disciples passed by a man born blind, and the disciples asked Him, ""Who sinned, this man, or his parents, that he should be born blind?" Jesus said, "It was neither that this man sinned, nor his parents, but it was in order that the works of God might be displayed in him."" Jesus proceeded to heal the blind man, who went on to testify to the Pharisees and his family about Jesus (John 9:1-41). Sometimes, God places heavy trials (like being born blind) upon us, not because we did something wrong, or because He enjoys watching us suffer, but because He has a much bigger plan in mind. What an incredible blessing - what an amazing God who can use even our sufferings as a platform to display His glory to the world.

The third miracle is about recognizing the power of God to save.  Luke 5:12-14 paints a picture of a desperate man who had leprosy. "When he saw Jesus, he fell on his face and implored Him, saying, "Lord, if You are willing, You can make me clean." And He stretched out His hand and said, "I am willing; be cleansed."" It's a beautiful picture of our salvation. We come, not just with empty hands, but with unclean, leprous hands. We must fall on our face before a holy God and ask Him to make us clean from our sins, having faith that He is able. And the glorious news is that He IS willing and He IS able to stretch out His hand. He will cleanse all who come to Him in repentance and faith.

The final miracle is about patience. Mark recounts perhaps the most bizarre miracle of Jesus in Mark 8:22-26. Jesus spat in the eyes of a blind man, laid His hands on him, then asked him what he saw. The man said, ""I see men, for I am seeing them like trees, walking about." Then He again laid His hands upon his eyes; and he looked intently and was restored, and began to see everything clearly." As we see from the other miracles of Jesus, He had the power to heal completely. He didn't even have to touch or be in the presence of the sick person to heal them. So why would He choose to heal this man incompletely at first? It's sort of like the Christian walk. Before we know Christ, we are spiritually blind. Once we know Christ, we have spiritual eyes. We can see the hand of God working in our lives. Yet, we only see a glimpse of His purposes and paths. We may think we know what He is doing, but we may be very mistaken. We see men like trees walking about - we see spiritual things, but incompletely, distorted. One day, however, we will receive our ultimate healing. Jesus will lay His hands on us for a second time, and we will be in His presence. And then, we will see everything clearly.


I realize that I may never be fully physically healed in this life. That my body may never function properly. That I may never have a pain-free day. But I trust that my God has the power to heal me instantly, and that He will do it, if that is what will bring Him the most glory. I trust in a good God, one who has time for me and cares for me. A God who is big enough to use my sufferings to put His glory on display. A God who, when I came in faith, begging for forgiveness, healed my spiritual leprosy and made me His child. And a God who, one day, will heal me completely. And on that day, when I look intently, and begin to see everything clearly, I know that I will not desire to change a single brushstroke of God's work in my life.

Hannah ;)

Thursday, January 26, 2012

"Complicated"

Well, well, well, it's been an interesting few days since I posted last. Turns out I was right about needing more steroids! I felt pretty crummy all weekend - shaking, heart going fast, pain really bad. I kept taking my heart rate and blood pressure as instructed... and on Sunday night, my heart rate went up 35 beats per minute any time I stood up. That's a pretty bad change, and it wasn't responding to fluids. So Monday morning, I called Endo Doc, who instructed me to start right away with an extra dose of steroids while she prepared to get some IV fluids for me at her office. I went to her office later that day... and thankfully, by the time I arrived, the steroids had kicked in, and my heart rate, while still high, was more stable and didn't change when I stood up. So we decided fluids would be superfluous - so YAY no needles! ;)

So what's going on? I had been so stable for so long. Endo Doc's theory is this: patients who have chronic pain have higher blood levels of cortisol (steroids). The extra steroids are needed for the body to be able to cope with the stress of dealing with that much pain. My pain is flaring very badly, and since I have no ability to make extra steroids, my body can't compensate, and my heart starts to go nuts, I shake, and my body can't stay hydrated. She also thinks that I may additionally have something called dysautonomia, dysfunction of my autonomic nervous system, caused by my autoimmue problems. This means that your nerves are damaged and have trouble regulating body temperature, sweating, heart rate, blood pressure, blood sugar, and digestion. This would explain a lot of my random symptoms, and it's something a neurologist would investigate further if I continue to have these issues. She said that I am such a "complicated" patient with so many interconnected issues that it's hard to tease out what issue is causing what problem.

Endo Doc instructed me to increase my steroids quite a bit for a week, then taper down over the following two weeks. I also FINALLY got her to write me a prescription for a steroid shot to keep on hand in case I can't keep my steroid pills down. It is very important to have on hand, and she's talked about giving me a prescription for this every time I see her for, um, the past 20 months, but somehow it never makes its way to my pharmacy.

Since we think that my adrenal issues right now are out of control due to my pain being out of control, she called over to Rheumatology, and they saw me without me having to wait a minute! I should also mention that Endo Doc was double booked, but still spent a good 45 minutes with me. The Rheumy PA recommended a trial of a new pain med, one that used to be used for seizures, but is now used for chronic nerve pain. I am not super excited about this med, but it's something I've discussed with doctors before, and it's time to try SOMETHING to give me some relief. Rheumy PA told me that my Rheumy doctor is "out of ideas" for how to help me because I'm so "complicated."

So... all in all, Monday was an interesting day, to say the least. I am so thankful for God's goodness in all this... I avoided an IV, the doctors responded promptly, were willing to think out of the box, and took time out of their busy schedules for me. Most important to me, they were NICE to me and did not dismiss my problems, even though they do not totally understand what is going on. Since Monday, my heart has settled down substantially on the higher dose of steroids, and I am feeling MUCH better! I started the new pain medicine last night... and today was better, pain-wise, so I really hope that the med ends up working for me! I have to slowly titrate up to a therapeutic dose over a few weeks. Also, thankfully, MY WOUND IS HEALING! It is looking smaller to me, which is fantastic! I first noticed the change on Monday... interestingly, we increased my methotrexate shots two weeks ago... wondering if that might be helping suppress the autoimmune stuff so the wound can heal! I have lots to be thankful for, even though my health issues are "complicated," it's simple to be thankful for the little blessings God brings!

Hannah ;)

Saturday, January 21, 2012

The Beat

Sorry, it's been awhile again! I've been pretty busy doing really fun things and living life (that's a good thing).

My wound still isn't showing much progress. It was looking bigger. Now it's back to how it was a few weeks ago. Honestly, we haven't made

significant progress since Thanksgiving-ish, which is disappointing. I am still trying to drink protein shakes every day, since my eating is still kinda spotty at times. My joints are doing fantastic! I have had a little bit of stiffness for the past few days, but overall, they are the best they've been in MONTHS. Yay! *happy dance, which I can now actually DO, since I'm not stiff*

I have been experiencing some annoying issues - fatigue, dizziness, shaking, and heart racing - in addition to increased muscle pain. At first, I just thought I was tired from the arthritis flare, then realized that the flare was over, but I was still having these episodes. I noticed that during these episodes, my heart was going really fast... Hmm. Early last week, after taking my pulse for a few days in a row, and finding it to consistently be in the 120s (my normal heart rate is about half that!), I called the Endo Doc. She didn't call back, so I tried increasing my fluids (added 2 liters of half-strength Gatorade with added salt daily), which helped a little.

I also accidentally took extra steroids on Monday. I know, stupid. I have a really good system for taking meds so that this doesn't happen...I just didn't follow it on Monday. Oops. Anyways, my heart stopped racing, I stopped shaking, I had way less pain overall, and I felt really good. Interesting.

Endo Doc finally returned my call on Wednesday this week, while I was still feeling good from the extra steroids.
She said that if my heart rate was that high that I should come in for IV fluids or go to the ER.

Um, if it is that serious, why did it take her a week to get back to me?!? Anyhow... with the extra steroids still in my system, I was fine. I am supposed to take my blood pressure and pulse daily in both a seated and standing position. If the heart rate goes up 15-20 beats per minute when I stand, that means it's time for medical intervention.

She thinks that the symptoms I've been experiencing for the past few weeks are fallout from the stress my body was under during the arthritis flare. So, in the future, I will need to take extra steroids whenever I flare, as well as any time I get sick - even with a cold. Hopefully, this will prevent me from having the adrenal issues I've been fighting for the past few weeks. She hoped that the one day of extra steroids would be enough to get my body back on track...
This is exactly what I look like
when I'm downing Gatorade

however, I started feeling yucky again Thursday, and crashed Friday afternoon (complete with a pretty dramatic change in heart rate - but don't tell Endo Doc because I did NOT go to the ER!). ;( Two liters of Gatorade later, I was feeling better, and my heart rate dropped 25 beats per minute. I am so thankful that my stomach behaved so that I actually absorbed the Gatorade, AND that just drinking was enough to make me feel more stable tonight! I can't count the number of times I've needed IV fluids because my stomach couldn't absorb what I drank by mouth.

So that's the beat on what's going on with me! I think I may need to go up on my steroids for a while to get my body back in equilibrium - and get my heart rate to stay down! I am thankful that God is in control of this (and every) situation. I hope that things settle down very soon...without needing to get IV fluids.

Hannah ;)

Thursday, January 5, 2012

Glory Through Weakness

I continue to have an open wound... it is not really changing much, which is frustrating. I cauterized it the other day, and my skin had a weird reaction. I only touch the silver nitrate sticks, used for cauterization, to the wound. It never touches the skin surrounding the wound. So I was rather shocked to find that the skin in an "O" around the wound decided to slough completely off, leaving me with more raw spots. Yeah.

This actually happened a month or two ago after Misinformation cauterized the wound. This led to an extra trip to Dr. Saturday to assess the damages. I assumed she had done something wrong... but I guess not. The silver nitrate is not harmful to healthy skin - Dr. Saturday rubbed a stick on his bare arm to demonstrate. So we really have NO clue why this happened. Very weird.

I have sort of decided to give the wound til the end of February to heal... then if it's still not better, I will look more seriously to the surgical options. Trouble is, we don't know if the surgery would "take" since it's believed that my body is basically attacking the wound area. We shall see if the increased meth helps calm down my body so I can heal. My joints are doing A LOT better, praise God! Still having more pain than I'd like, but it's a whole lot better than it was last week, so I think this flare is on its way out, thankfully!!


Having sort of embarrassing issues like an open wound on a, um, sensitive area, joints that don't work right, and a body that tires easily does two things for me. First, it reminds me that this world is not my home, and that this body is a temporary house for my soul. Second, it keeps me humble... I have no delusions that I am a great, grand, important, amazing person. I'm reminded of I Corinthians 1:26-29. Paul says, "For consider your calling, brethren, that there were not many wise according to the flesh, not many mighty, not many noble; but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things to the world to shame the things which are strong...that no man should boast before God."

Paul says it in a similar way in II Corinthians 4:7 - "But we have this treasure [the gospel - the light that comes from having a right relationship with God] in earthen vessels, so that the surpassing greatness of the power may be from God and not from ourselves." He calls our bodies "earthen vessels" - jars of clay - something totally ordinary and humble. So God uses something kind of boring and unimportant to do something great - so that the outcome is clearly from Him, not the chamber pot. ;)

God didn't call too many brilliant, important people to be His children. When He uses the weak and foolish to accomplish His work, it's obvious that their "power" isn't from themselves - it is GOD working through (or in spite) of them. And so He is more greatly glorified in my weak, scarred, battered body, because it's apparent that I am nothing special - but He who is at work in me is. I can't take the credit for what happens in or through my life. There is no room for me to boast about my strength - I have none! But I can boast in a couple things: in the Lord, and in my weaknesses.

"But by His doing you are in Christ Jesus, who became for us wisdom from God, and righteousness, and sanctification,and redemption, that, just as it is written, "Let him who boasts, boast in the Lord."" (I Corinthians 1:30-31)

"He has said to me, "My grace is sufficient for you, for power is perfected in weakness." I will rather boast about my weaknesses, that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties for Christ's sake, for when I am weak, then I am strong." (II Corinthians 12:9-10)

What an amazing God, who would choose to show His great love to us, His foolish, weak children, and then USE us, His earthen vessels, in great ways to His glory. How is He using YOUR weaknesses for His glory right now?

Hannah ;)

Tuesday, January 3, 2012

Joint Effort

Yesterday I went to see the Rheumy folks. It ended up being a 2.5+ hour appointment (mostly waiting). I didn't mind, because I was very grateful that people were putting their heads together and trying to think big-picture in deciding how to treat my arthritis. This Joint Effort (haha, get it??) honestly is pretty rare in medicine these days. First, I saw the PA, who had just spoken with Endo Doc. Endo Doc was NOT in favor of increasing steroids. For one thing, we have worked SO hard to get me to the level of steroids I'm at right now, and two, she thinks that I had joint issues even when on a much higher dose of steroids. Thirdly, yesterday was the first day in three weeks that my joints were NOT visibly swollen (this happens almost every single time I go to the Rheumy). I'm very happy about that, but it makes it hard to convince the doctor that yes, I really am having joint issues. ;) There are labs that they check for inflammation - but mine were normal. I had to explain that mine have always been normal, even during a bad UC flare-up - my body is just special like that! The only sign of inflammation is that I'm still running a low-grade fever.

Then I had to wait again so that the PA could talk to the Rheumy doctor. THEN the doctor came in and we basically started over again. In typical fashion, she asked me if I thought my symptoms were stress-related (she always is thinking that I am depressed/anxious). She said that Christmas is a very stressful time for most people. Um, it's like my favorite time of the year and I love being able to spend time with my family because they are awesome. So... no, don't think it's stress related. So then she said it was probably "good stress" related. Okay... sure. ;/

The end point was that I will up my meth a bit because I'm still on a pretty low dose of it. I also got to talk PA school with the PA for quite a while, and she had lots of good tips and advice!

Thankfully... I actually had a fantastic day yesterday and was hurting a lot less! So maybe this flare-up is on the way out... we shall see! I continue to remain thankful to God for using my surgeries to get rid of the abscesses and give me better health.

Hannah ;)