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Monday, August 29, 2011

Prayers for Patt

Hi Semi Colon Readers!

Tonight I have a prayer request for you.

I have mentioned my friend Patt several times. Patt and I met in April, when I was in the hospital getting beefed up on TPN for my third surgery. She lives in Colorado and comes all the way to Texas for surgeries and treatment. Patt has lived with Crohn's disease for over 40 years. We share many things: scars, surgery stories, TPN, and ostomy bags. She had a rough go of it many years ago with (would you believe?) recurrent abscesses that didn't go away until she had a more radical surgery to remove her rectum and anus... just like me. This granted her 20 YEARS of remission.

Sadly, she has had an extremely difficult time over the last several months. She was recovering from a surgery when we met. I got to go home after two weeks, but she remained inpatient for an unbelievable additional two MONTHS. She endured another surgery, and finally went home... not because she was any better, but because her mental health simply couldn't take another day in the hospital.

Since arriving home, she has continued to endure great pain and is barely able to eat. She needs another surgery. After trying to push through for months, today she was admitted to the hospital, and Dr. Saturday will operate on her tomorrow.

Patt has been so sweet and kind to be more or less my "guardian angel" on earth as I've gone through my surgeries and hospital stays this spring. The day I was supposed to go home in April, but took a turn for the worse, she was the one who alerted the charge nurse to my downswing. Despite feeling terrible herself, she came in to check on me several times.

A month or two ago, I got a huge package in the mail. It was a beautiful quilt from her church, Patt explained, a prayer quilt.



The quilt is tied instead of being quilted. Each person prayed for me, then tied a knot, so each knot represents a prayer. It's such a treasure, and the meaning behind the knots makes it that much more special.



The back is a cross, to remind me that Jesus is always with me.



Please pray for this very dear woman! She has endured so much, and she is facing yet another surgery. Pray for God's grace and peace to be with her. Pray for skill for Dr. Saturday. And for health to be restored to her body.

Hannah ;)

Saturday, August 27, 2011

Answered Prayer

I just wrote a beautiful post, but Blogger ate it...

So here's the short and dirty version. ;)

I went back up on steroids, and I am feeling MUCH BETTER, praise God! Pain is better, I can actually get out of bed and walk to the bathroom without feeling exhausted! Thanks for your prayers; I could definitely feel them!

I felt HUNGRY today, which hasn't happened in many months, and is very exciting!

My wound measured 5 mm less deep on Friday! My skin is a disaster again and needs a VACaction, but we are holding out as long as possible, since Edgar is doing such a good job.

Please keep my very dear friend Kendra in your prayers. She finished her 3rd round of chemo on Friday, and the couple of days after chemo are pretty tough on her.

I have a lot to thank God for, but as I mentioned in my previous post, God is worthy of my thanks and praise primarily for who He is, NOT just for what He does or when He does what I want.

Hannah ;)

Thursday, August 25, 2011

Pain Flare

I've written a lot about insurance and stuff lately, which is probably about as much fun to read as it is for me to experience. Sorry! ;) I didn't mention that last Friday, the measurements on the wound were (drumroll, please)... smaller! Even though I spent a few days off Edgar, the wound still got 7 mm smaller, which is simply amazing. The doctor kept repeating how great everything looks and how well it's healing. The nurses can't stop saying how much smaller it is. YAY! I can't wait to see how small it will be tomorrow.

Unfortunately, I'm having a rough time in general. Thankfully, my stomach is doing okay. I have random tummy pains, but it's way better than it was. My muscles and joints, however, have been hurting SO bad for the last week. It's been a while since my pain was this bad. I'm also feeling shaky and very, very tired. I dropped down on my steroids a teeny, tiny bit about 3 weeks ago, so I am not sure if that is the problem. A few days this week, I went back up, but I don't think it made a huge difference.

I am very quickly becoming frustrated that the last week has seen me in bed a whole lot more than out of bed. Feels like I'm taking steps backwards. I know that my body is still having to work extra hard to heal up the wound, and that it's recovering from having 4 big surgeries in the last 20 months. But I was feeling better two weeks after surgery than I feel now. And then there's the whole post-surgery letdown - I'm supposed to be BETTER. I always believe that somehow, surgery will fix my autoimmune inflammatory issues. The pathology on the stuff that they took out in this last surgery showed that my body was actively attacking it - it was very ulcerated and inflamed and stuff. So I was hoping my body would settle down with that angry tissue out. Instead, I think it's decided to try to find new targets! ;)

I saw Dr. Pain and he gave me the green light to up my pain meds if needed. I'm supposed to rest in bed a lot and drink a lot. I know that I'm impatient. I just want my body to WORK so that I can get out and enjoy life and start working again. But that's not what He has for me (at least not this week).

Last night as I was having these thoughts, I began to read Spurgeon's comments on Psalm 115:18. He wrote, "Go on praising Him if He shall take you up to the bed of sickness -- if every limb shall be a mass of pain, if every nerve shall be a highway for a crowd of pains to travel on -- yet still go on blessing and praising and magnifying Him, for this is His due!" Wow. I'm constantly amazed at God's ability to tell me EXACTLY what I need to be reminded of at EXACTLY the right moment. It doesn't matter how I feel. It doesn't change who God is and what He has done for me. He remains worthy of my worship!

Hannah ;)

Tuesday, August 23, 2011

One Year.

One year ago today, I went into the hospital for my second surgery.

I had had the first part of the J pouch procedure in October 2009. This is where they remove your colon and create a J pouch out of the end of your small intestine. The J pouch is stapled into your pelvis and was supposed to act as a small holding area for stool. While the J pouch heals, your stool is diverted with an ileostomy. Unfortunately, I developed pouchitis in my J pouch right away. Essentially, my ulcerative colitis moved from my colon to the J pouch. By last summer, my immune system was going nuts. I could barely walk from arthritis and muscle weakness. My whole body hurt constantly. I was having bowel obstructions almost daily. My stomach either didn't empty properly or emptied almost immediately, wreaking havoc on my ability to absorb fluids and medication. I was exhausted, constantly nauseated and in pain, and passing blood from my J pouch 8 times a day. My doctors, family and I reached the difficult decision that the J pouch needed to come out.

I don't even know how to describe this surgery or the difficulty of the days which followed. After a 5.5 hour surgery, I spent an additional 5 hours in the PACU, where they tried in vain to stabilize my vital signs and pain as I screamed and cried.

I was taken up to the floor, but my vital signs continued to deteriorate. A Rapid Response Team was called into my room. I vaguely recall the room being filled with people (and I was not sure why they were all staring at me!). The tech eventually had to turn off the monitors, because everything I was hooked up to was beeping and alarms were sounding since my vital signs were so bad.

I was transferred to the ICU. My hemoglobin was half of what it was prior to surgery - I had lost half of my blood. During my time in the ICU, I had periods of lucidity, but became very confused and was hallucinating. I was in the worst pain of my life. I was experiencing what we later found out was Systemic Inflammatory Response Syndrome - my already hyperactive immune system wildly overreacted to the surgery, causing my body to go into shock and experience extreme pain. They tried different medicines to try to calm me down and help my pain so that I wouldn't try to get up or take off my tubes and wires in my confusion. I spent quite a lot of time screaming in pain.

Thankfully, while I remember more than I want to about the days following surgery, the clearest memories I have are of my wonderful family. My mom was by my side every single minute, except for the hour or two when the nurses kicked her out. My dad and brothers and sister came any time they could. I remember how calming and comforting it was just to hear their voices, to hear them talk about everyday normal stuff. I also remember Bryan Kervin of Rise and Conquer coming to visit me in ICU.

While my recovery from this surgery was excruciatingly slow, painful, and riddled with complications, not one thing that happened was a surprise to God. He did not change. He remained in control. The (literally) hundreds of you who wrote cards, sent emails, facebook messages, texts, flowers, gifts, balloons, visits -- your testimony of love and support reached many people in the hospital. And I was greatly encouraged, and many lives were blessed by memorizing Romans 5:1-11 with me.


One year later, I hit "SUBMIT" on my application for Physician Assistant School. While I'm much healthier than I was a year ago, I'm not quite healthy (yet). This year, God has brought me through two additional surgeries related to last year's surgery. And now, the Lord is allowing me to move forward again with my life, to some extent. One of my favorite Proverbs, one that pretty accurately describes my life, is Proverbs 16:9: "The mind of a man plans his way, but the Lord directs his steps." I make my plans, but the Lord directs my steps. Often, I end up walking a road that I would never have chosen to walk. But guess what? His plans are ALWAYS better. I would rather be where He wants me to be than anywhere else in the world. I'm excited about the possibility of PA school. I am confident that God will continue to guide my steps - whether it be towards PA school or in a completely different direction. And I am at peace with that. It may seem like uncertainty, but leaving something in the hands of God and trusting Him with the outcome is the furthest thing from uncertainty in the universe.

Hannah ;)

Thursday, August 18, 2011

Voodoo

Well, I hate to be a downer after Friday's blithe post about how everything was just working out perfectly... unfortunately, I have some rather interesting news to share. I got a call on Tuesday afternoon from KCI, the manufacturers of Edgar, informing me that my new insurance did not cover "Durable Medical Equipment," and therefore I would be responsible for paying cash for Edgar. I returned the call and left a voicemail, reassuring the lady that it was a mistake, we'd called both my insurance and KCI and been informed that my company calls Edgar a "Test and Procedure," which is covered.

I hadn't heard back from her, so I called again the next morning. Wednesday morning, just hours before I went to get Edgar hooked back up. The lady told me that I was misinformed. In fact, my insurance does not cover Edgar. After 3 solid hours on the phone, going back and forth between the insurance company, the wound care clinic's insurance verification lady, and KCI, we were able to elucidate that we had been given false information. The bottom line is that my insurance does NOT cover Edgar, but we (the wound care clinic and myself) were told repeatedly, by both KCI and the insurance company itself, that they did cover him. So suddenly, instead of being responsible for a pittance, huge dollar signs are flying everywhere. And I have to decide what to do by 3:00 that afternoon.

In the midst of this, I completely blew a gasket. I don't think my parents have seen me stomp my feet like that since I was a three-year-old. "This is a tens of thousands of dollars mistake that they've made! I trust God's in control, but it feels like He's not when STUPID people make STUPID mistakes!" I am thankful for my parents' leadership in their reaction - they were kind and reminded me that this is NOT a big deal or a surprise to God, that I had been responsible and done all that was in my power to do to verify what benefits I had. God is still in control. And He does what He pleases. And then my dad prayed.

I was also very thankful for Andrew's reaction. He handed me this little beauty, along with a box of pins.

Check out the front, noting the pins coming out of the eyes:


And the back, appropriately named:


While I was poking holes in my voodoo doll, the Holy Spirit was poking at my conscience with such verses as Job 2:10 - "Shall we indeed accept good from God and not accept adversity?" and Job 1:21 - "The Lord gave and the Lord has taken away. Blessed be the name of the Lord." I clearly saw my own anger, bitterness, and unforgiving heart. But I felt so justified in my feelings! I had this little internal dialogue with God:

"God, I was diligent and called and checked multiple times and they lied to me! If they had told me the truth, I would have had seven days to figure out some other plan! Now instead, here I am, a few hours before I'm supposed to get the WoundVAC back on, and what am I supposed to do? I know my anger is wrong, and that I need to be forgiving of these people... but do You realize what they have done to me?"

In my head, the answer comes: "Do you realize what YOU have done to me? My Son had to suffer and DIE, not because of an unintentional mistake you made, but because of sins that you purposefully decided to commit! Don't you remember the story of the unforgiving servant?"

Ouch. That stung worse than pins stuck in my eyes...

It might have been more productive and less infuriating to spend the time talking to a brick wall than to try to talk to my insurance company. To even get them to replay the recording of the phone call where they gave the false information, I have to write a letter, get it sent to a committee, who will consider for 30 days whether they should even replay the call. Who knows what I'd have to do to try to get them to make their mistake right. Probably wouldn't happen this year, that's for sure! I STILL am not entirely sure what the company will or won't cover - I spoke with 3 different representatives and received as many different answers. I believe they will cover the nursing care and doctor, but not the VAC rental.

Thankfully, KCI was more responsive. I got a supervisor's supervisor to replay the phone call where they erroneously assured me that my insurance did cover the VAC rental. They agreed that a mistake had been made, and they were sorry that I had been misinformed. I told them that was well and good, but I needed them to correct their error. I asked for 1-2 weeks of free VAC rental. This would give me the amount of time I would have had to look into other options, had I been given the truth a week ago when I called. To my surprise, I received a call on Wednesday afternoon, BEFORE my wound care appointment, informing me that upper management had approved my request. They are giving me free VAC rental for 12 days, beginning that day.

I'm pretty sure God was laughing at me and my reactions... after all, hasn't He ALWAYS provided for me? Has He EVER not provided something I needed? And, in a sort of sideways manner, didn't He grant me 12 FREE days of Edgar because of someone's mistake? I'm not really sure why I ever doubt His sovereign control of all things. I felt quite sheepish. He really is unreasonably good to me. And He loves to show SO CLEARLY that it's He who is the Giver of good things.

I also had to call back the poor wound care clinic lady who verifies insurance to ask her forgiveness. She had simply told me exactly what the insurance company told her (which turned out to be false). I was frustrated and short and really very rude to her on the phone, because she was telling me things that weren't true. But it turned out that she, of course, hadn't made any mistake at all... poor lady was also given wrong information by my insurance. Not that my attitude would have been justified if she was wrong... anyways, I asked her forgiveness for my rudeness and unkind speech and anger.

All in all, it was a very frustrating, humbling day. Any day when you spend over 3 hours on the phone with insurance is frustrating. And any day when God shows me so clearly what a sinner I am, how quickly I doubt His sovereignty, and how much I am in need of His grace is humbling. I pray that I don't soon forget the lessons I learned.

Hannah ;)

Monday, August 15, 2011

VAC-action

I'm FREEEEEEEEEEEEEE!!

That's right! ;) I have been having a terrible time with the wound VAC dressing. It just does not stick to my skin. By the time I get home from the clinic, it's already peeling up around the edges and starting to leak. This essentially defeats the purpose of having Edgar - he can't do his job if there's no seal! I try to tape it down, paste it down, cement it down (utilizing different sticky stuff from the wound care clinic), but at best, it holds for 12 hours. And, as you can imagine, the sticking and re-sticking is 1). incredibly difficult to do to yourself, and 2). incredibly uncomfortable for poor raw skin!

I was supposed to try to hold out until Sunday night. Alas, by Sunday afternoon, I had re-taped/cemented/pasted the wound area 3 times since the Friday afternoon dressing change. And it just wasn't working. I had a lot of trouble sleeping on Friday and Saturday night because my skin is so uncomfortable and itchy and burning (like I have mentioned... I have good pain tolerance, but NO tolerance for itching!). So Sunday afternoon, after arranging enough mirrors to do carnival tricks, I pulled off the tape, closed my eyes, thought of England, and yanked out the foam.

I am free! I have been on the woundVAC for 47 days. I am so grateful for Edgar and the amazing work he is doing, but BOY, I am sure enjoying being tube free and tape free and device free* for a while! I feel so light and free! Every time I stand up, I keep trying to pick up Edgar - and then I laugh, because he's not there!

In the meantime, dealing with the wound is rather messy, but thankfully, my skin is already much happier than it was. Hopefully my skin will be all healed up by Wednesday, when I get hooked back up. Please pray that we will be able to figure out a solution to make the tape actually stick and hold up for a few days! This is crucial to the wound closing up! We have tried so many techniques and methods and tapes and glues and all sorts of things I didn't know existed. ;)

Hannah ;)

* With the exception of Squirt's bag - which is both a device and has a lot of tape.

Friday, August 12, 2011

Provision (and lots of time on the phone)

This week has been interesting... God has continued to do exceedingly abundantly beyond what I could ask or think! To Him be the glory!

I have spent at least an hour on the phone every day this week, talking to insurance companies, KCI (manufacturer of Edgar), wound care nurse billing people, wound care DOCTOR billing people (yup, they are completely separate... THAT makes sense - NOT!), and some others that I've forgotten.

I think I forgot to mention in my last post that I saw the rheumatologist last week. It was a quick visit - sorta "yeah, you're flaring, sorry, we can't do anything about it until your wound heals." The two treatment options I have would both suppress my immune system and slow down my healing - exactly what I don't need right now! I had been needing to ice my knees every night - they would turn bright red and I could feel the heat radiating off them from all the inflammation. My fingers and wrists were very stiff, too. Thankfully, I think that the swelling and redness and stiffness has been better for the past couple days.

Rheumy ordered labs. Dr. Saturday wanted to run labs, but I had just had them done with Rheumy, so it would be simple to just send them over to him. So I thought. ;). Getting them sent to Dr. Saturday ended up being like pulling teeth. You know, I asked Rheumy's office to fax them to Dr. Saturday. They said that they had faxed them, and asked me to confirm with Dr. Saturday. So I called Dr. Saturday's office. Note: each time I say, "called their office," it means that I called, listened to the menu options, pushed the button, talked to a front desk worker, they send a message to the nurses, and then I wait for the nurse to call me back. This definitely contributed to my time on the phone for medical-related purposes this week. ;) Dr. Saturday didn't get it. Called Rheumy again. She faxed it again. Dr. Saturday didn't get it. Called a third time. They faxed it a third time. Called Dr. Saturday a third time. I may have mentioned that his MA is "Missinformation." "Nope, still didn't get it. Oh wait, our fax machine is out of paper!" Hahaha... fail.

The labs ended up being okay... not horrible, but not perfect. I ended up coming in to see Dr. Saturday on Wednesday. He was concerned with the obstructions, too. He ordered an MRI to make sure that nothing was going on. This was the exact test that would give me peace of mind, so I was so thankful that he ordered it. While I was waiting to get scheduled for the test, an older gentleman came and sat next to me. He asked me, "You getting a colonoscopy, too?" Without thinking, I answered, "Um, no, I don't have a colon anymore. But before they took it out, I had over a dozen colonoscopies!" I think I shocked him. I gave him a few tips on making the prep slightly less yucky. ;)

I called the MRI place today to see if they had read the report - I just didn't want to go into the weekend not knowing what it showed. I know I'm being an over-concerned patient, but I think I've earned that right at this point! They said that the doctor should already have it. Dr. Saturday is really, really good about calling right away, so I thought this was weird and called their office. Missinformation told me that they didn't have the report yet. I politely disagreed, and suddenly, she came up with the report. ;) Thankfully, the MRI turned out just fine, except for the huge cysts I always have. This was a HUGE relief to me. Of course, why I'm having all this pain and stuff remains unexplained. Dr. Saturday told me to wait it out til Monday, then call and give a report on how I'm feeling. Hopefully this is nothing and will just clear up...

I am having a really terrible time with Edgar. The tape is simply not sticking to my skin. So it's leaking - which, in addition to being very gross and messy, basically defeats the purpose of having Edgar. If there's no seal, you can't have a vacuum! My skin is also incredibly itchy, red, and bumpy, and burns like crazy. It's keeping me up at night (through my cocktail of night meds, which is impressive!). I will be honest here. I have a pretty high pain and annoyance tolerance. But I have a very low itching tolerance. So, I'm pretty miserable. If I'm not leaking wound juice and blindly re-taping (very funny to watch, I'd imagine!), I'm trying to not scratch the giant welt that is my skin anywhere the tape touches. Thankfully, the wound continues to close up - only 2.8 cm deep this week! It has closed up 6 cm! The length has also shrunk by 6 cm!

So... to finish off with the goodness of God, after all those telephone calls, I get a call on Thursday evening. To my great surprise, my new insurance WILL cover quite a chunk of the cost of Edgar, the nursing care, the wound doctor, and supplies! This is NOT what the policy indicated, nor what I had found in my phone calls... but it is true! This is a HUGE blessing and I am rather flabbergasted! God continues to surprise me with His goodness and faithfulness! I am also so blessed by the people at church who are willing to help cover the cost of Edgar - WOW!

Just wait - it gets better! Let's talk about God's timing! I have a two-day lapse in coverage next week. Paying for wound care and Edgar rental would be just a ridiculous sum, even for those two days. Well...remember how my skin really needs a VAC-action? I will stay hooked up to Edgar until my current insurance runs out (or until the dressing falls off, or until I can't stand the itching for another minute) on Sunday night. I will then unhook from Edgar and unpack the wound myself (which should be interesting), and NOT pay for Edgar for those days! When the new insurance kicks in on Wednesday, I'll return to the wound care clinic, get the wound packed, and resume therapy with Edgar. The days without Edgar will be very yucky and messy and painful as the wound will just be open and oozing - not quite sure how I'm going to manage this - but hopefully my skin will benefit from the tape-free time.

The best part of all of this is that God has given me two opportunities so far to share the gospel with people because of this. He is so clearly being glorified as He provides!! Praise His name. As I shared with a friend today, the most important think He provides is not a woundVAC or physical healing... it's the forgiveness from sin and right relationship with Him that came about through Jesus' death and resurrection.

Hannah ;)

Monday, August 8, 2011

Great is Thy Faithfulness!

I'm still up so late because I've been messing with Edgar... unfortunately, the seal on my wound completely busted again. This (3rd today) time, I think I fixed it okay-ish. I think the main problem is my skin. It is very irritated from the tape. I basically have hives everywhere that the tape touches me. After a while, the hives give way to little bubbles, and the skin just peels off. It feels about as good as it sounds. Even if it were in a place where I could politely scratch, haha, it's under tape. They also have to tape a "tracking pad" (a thick line of the foam) up from the wound, across my bottom, to my hip in order to attach the tubing that leads to Edgar. We have to alternate "cheeks" each dressing change because the skin is literally falling off. It's bad enough that the doctor and nurses are considering taking a "vacation" from Edgar (and therefore, this special tape) to give my skin a chance to heal for 2-3 days. Anyways, all's well that ends well, and I think I got everything taped down again so I'll stop dripping wound juice tonight! ;)

Got my wound remeasured on Friday. Again, made the nurses and doctor look good. ;) It's half a cm smaller than last week... not nearly as dramatic as the 3 cm from the previous week, but still very excellent progress! Everyone is thrilled. The doctor said he has a good feeling about how all this is going - quite a change of tune from, "You have so many risk factors - UC, poor nutrition, steroids - that I am not sure that you'll heal well." Every nurse who sees the wound is amazed at how much better it looks compared to when we started. It's still big, but it's not the huge ugly gaping hole that it was. Praise God! By the grace of God, Edgar, our therapy with Prisma (artificial collagen), a smaller piece of foam, and me pounding down the protein every time I eat... it's working!!

On Monday, we added in a wash of a crushed-up antibiotic pill dissolved in water. There's no infection, thankfully, but, there is an ah, olfactory that conjures memories of my microbiology lab. Turns out that bacteria love to hang out in the foam. These aren't bad bacteria - they are the normal bacteria that colonize your skin (and therefore, my wound)- but when it's warm outside... they tend to overgrow. ;) So far, the pill powder is doing the trick!

So... in one of my last posts, I mentioned that I'd be losing Edgar due to insurance. Well... some very determined brothers and sisters decided that shouldn't happen. Not sure how I can possibly thank you, except to tell this little story:

I was talking to a friend last week about the situation, and I just expressed faith that God would provide for my needs. I wasn't really thinking, "God will provide for my needs by allowing me to keep Edgar." I said that He's always given me and my family exactly what we needed at exactly the right time. He can heal me without the woundVAC. He can do whatever He wants. I also mentioned that He tends to do these things in ways I never would have thought of.

So after Sunday's happenings, I called her and said, "Hey, guess what God did?" I was able to explain to her that thanks to the generosity of others, I'm keeping Edgar. She said, "Wow, I really don't know what to say, except that your God is pretty awesome." Isn't He? He provided just as He has promised... and, just like I had said, not at all in the way I thought! And I got to share that with my friend. He is putting Himself and His faithfulness and goodness on display through people like you all. Who knows the impact this will have?

Couple of prayer requests:
  • I have been having more and more abdominal pain and pain in general. I also have had 2 (very painful) obstructions since Sunday. I'm going to see Dr. Saturday tomorrow, because something just isn't right. I am really feeling quite terrible and having lots more pain than normal.
  • Please pray for my skin to heal up and for wisdom for the nurses and doctor for managing the reaction to the special WoundVAC tape.
  • Praise God - I have gained 10 pounds from my lowest weight in March!! This is a very hard-earned victory! I'm back up to where I was in December - not at my healthy weight, but not hovering near double digits anymore!
  • Patt, my friend with Crohn's who I met in the hospital in March, is very ill and discouraged. She spent over 3 months inpatient this spring and had two surgeries. She is facing surgery yet again in the next few weeks. Please pray for encouragement for her soul and healing for her body. It is so devastating to imagine her enduring another surgery and long recovery several states away from home - she comes here from Colorado for treatment.
  • Hollye, a J poucher I also met in the hospital in March, is back in with an obstruction.

"Why do you worry? What possible use does your worrying serve? You are aboard such a large ship that you would be unable to steer even if your Captain placed you at the helm. You would not even be able to adjust the sails, yet you worry as if you were the captain or the helmsman of the vessel. Be quiet, dear soul - God is the Master... Believe this and you will have peace." Charles Spurgeon on Matthew 14:27.

I continue to be completely amazed at God's work... He is so good and so faithful!

Hannah ;)

Saturday, August 6, 2011

Adventures of a Semi Colon: Last night I had the strangest dream/I ever dreamed before...

I dreamed that my whole family woke up in the night to find the house on fire.

Everyone began grabbing treasured possessions as we called the fire department and made for the safety of outdoors.

What do you think I did while everyone was collecting photo albums and valuables? I grabbed my navy blue duffel bag and stuffed it with as many boxes of ostomy supplies as it would hold. Seemed pretty logical to me in my dream. Those supplies are darn expensive!

Hannah ;)

Thursday, August 4, 2011

Long Update

Okay, so sorry for no updates in a while, so this may be long! I was hoping to NOT have to post bad news... alas...

I went to see Jack Black last week. It was good - I was pretty stable. That is to say, most of the time on most days, I get enough pain relief to function. This takes quite a cocktail of several strong meds, but it works. Some days, I don't need much medicine. Some days, I take up to my limit, and still hurt too bad to move. Most days are somewhere in between. This is pretty much the ideal goal we've been working towards for the past 18 months. We are thrilled to have attained functionality and a much better quality of life!

He gave me a big hug when I introduced him to Edgar. He said he can't imagine going through the wound changes. Honestly, though, I don't know if I'm just used to them now, or what, but they are becoming less painful each time. Which is great!

On Friday, I got my wound measured. Remember, last week, it didn't get at all smaller. We were stuck at something between 6 and 7 cm deep. Well, Friday, that sucker measured in at 3.9 cm!!! Praise God!! We made some changes that week - packing the wound a little differently, and I pounded down the protein 5-6 times a day, even if I felt sick and un-hungry. The doctor said it's my job to make them look good! I did my job well on Friday, much to everyone's delight.

The nurses commented that the WoundVAC would seal better if I could just avoid getting sweaty. I asked them if they had any tips for how to accomplish that during the worst heat wave ever in Texas while driving around in a car with a sub-par AC. The nurse said, "Well, I'M going to Colorado this weekend!" Hm... maybe a trip of medical necessity? ;)

I also had my one-month follow up with Dr. Saturday. I was feeling fantastic, energetic, really, just GOOD. I told him that this is the best I've felt in 3 years! He shook his head and said, "What a struggle!" It's sure been a long road getting here.

Okay, here's the bad news. Friday evening, just HOURS after my good report at the wound care clinic and surgeon's office... I started feeling bad. Feeling exactly like I felt before my surgeries - that feeling that something is not right. Feeling like I have abscesses again. I was pretty draggy all weekend. My belly just hurts and I've been getting shaky. My muscle pain is also flaring up something fierce. The good news is that my stomach is actually working - no dumping - even without meds to slow it down. I noticed this because I am getting waaay stoned on pain meds that usually don't phase me. I figure I'm actually absorbing them now, haha! ;)

I went to the normal doctor to get checked out to make sure I didn't have something "normal" like a UTI (my abscess symptoms always start with bladder pain and issues, and I had those same symptoms this weekend). I didn't. They checked my labs and felt my belly, and thankfully, nothing seems at all alarming or terribly off. I still am feeling pretty crummy. Hopefully this is just nothing... just my body being quirky, as usual...

The other news is that I will be losing Edgar at the end of next week. My current insurance (the story of how I have this insurance is a long, but it is clearly an act of God) will run out at that time. Thankfully, I was able to get some other health insurance (which is another long story, but is also clearly an act of God). The new insurance, sadly, will not shell out one penny towards the thousands of dollars that renting Edgar costs each week. Unless I am hospitalized or declared "totally disabled" in the next week (although it's not terribly too far-fetched to imagine either one of those things happening), I will lose Edgar.

This is NOT the end of the world. People have healed without WoundVACs for the past however many thousands of years. It just means that my wound will take much, much longer to close up. We were looking at many more weeks. So now it's gonna be many more months. It probably will not heal in 2011. I know that God is good and He always provides - He just doesn't always do it in the way I wanted Him to (go figure). But I tell you what, since I found out I'm losing Edgar, I sure quit complaining about being attached to a little pump all the time! He may be a bit of a pain, but he is helping my wound heal faster.

Finally... yesterday was my birthday. Last year, I got out of the hospital on the afternoon/evening of my birthday. I felt horrible. I was in a ton of pain. I was depressed. I was pooping blood multiple times an hour from my dying J pouch. I wasn't sleeping. I could hardly move because my joints were so messed up. I had just found out I definitely needed surgery to remove Twitchy the J pouch. I felt so yucky that it was all I could do to eat the sprinkles off the top of my ice cream - I didn't even have dinner. Yeah, this year was a LOT better. No, things aren't perfect. But they sure are better than last year. I am truly thankful for each day of life that God gives me!

Hannah ;)