Saturday, December 31, 2011

2011 by the numbers

3 ER Visits
2 Surgeries
14 Days on TPN
23 Days in the hospital
17 Pounds Gained
80 Days on Edgar the Wound VAC
34 Wound Care appointments
16 Uncomfortable days with a 1 inch diameter tube in my surgically reopened anus after my April surgery
187 Days since I've been able to shower without worrying about getting a wound dressing wet
187 Days spent with an open wound on my backside
7 Average number of days between ostomy appliance changes
10 Doctors who were involved in my care this year (not counting all the "miscellaneous" doctors I saw while in the hospital)
10 shots of methotrexate
8 MRIs
3 Opinions considered before embarking on this year's surgical adventures
5 months since my last ER visit!
180 days spent studying for the MCAT
6 Physician Assistant Program Applied to
4 Interview invitations
2 Acceptances to PA Programs

Countless labs drawn, doctor visits, pills swallowed, dressing changes, people who've seen/poked my wound, packages of gauze and tape and dressings and other wound care supplies, wound cauterizations, hours spent on the phone with the insurance company. Then there's the countless nurses, doctors, patient care techs, lab techs, housekeeping people friends, and family who helped me in some way on my journey this year...

I feel so incredibly blessed that the Lord has, once again, brought me through a year of challenges and difficulties. I had thought in my heart that I could never, ever go through surgery again. God took that fear and doubt and showed how great He was - that He can give me the strength to go through the very things I was so sure I could never face. And when I can go through these things, it's so clearly in His strength, not mine, and so He gets the glory.

I learned that God does always give me peace and the ability to endure... but He often waits until the exact moment that strength is needed, and not a moment before. And while you wait for Him to provide, you must trust that you don't need the ability until He chooses to give it.

I still continue to struggle daily with eating and stomach issues, chronic pain, arthritis, adrenal issues, and fatigue. But I AM much better than I was at the beginning of 2011. The Lord has answered so many prayers. I can eat again and my body is doing a much better job at assimilating nutrients. I no longer have chronic nausea. My abdomen is now free from infection. My intestines are now free from inflammation. My energy is better. I've been able to taper to a lower dose of steroids. I've stayed out of the hospital since July. I have not required any IV interventions whatsoever since then. All of these things represent huge strides in my health as well as incredible answers to prayer.

Right before Christmas, I ran into a family who has been faithfully praying for me for years, and I mean, prayer warriors who plead before the throne of God. I am so deeply humbled by the love of Christ that they show me - they barely know me, yet have been interceding on my behalf. One of them lifted his little daughter up on his knee and told me that she prays for me daily. I was completely blown away and overwhelmed and encouraged and touched... what an incredible testimony and example they are! I know that this is just ONE example, and there are many, many people praying... it just astounds me! May our great Savior get the glory.

God led me to apply to PA school by closing some doors with jobs and school this spring. I never, ever would have dreamed that this year would find me trying to decide between two excellent Physician Assistant Programs! He also granted me another wonderful blessing I never imagined this year would bring. What grace! However, I must say that if God chooses to take these things away, if He leads me down a different path, then I will choose to be content in that. What I want most in 2012 is to be where He wants me to be.

Happy New Year!

Hannah ;)

Friday, December 30, 2011

Wound Stuff & Happy News!

Today I went to see Dr. Saturday. He came in with an intern and tried to explain my history in less than a minute. "She had some kind of inflammatory bowel disease, had a colectomy, had a J pouch that went bad and had that removed, but they left in the anal canal and sphincter, so she got pelvic abscesses and I had to remove her anus and now she has a chronic wound. Oh, and she also is adrenally insufficient and has arthritis." Not too bad! ;)

He thought the wound is still the same size. I really think it's a few milimeters smaller, and I spend more time looking at it than he does. Haha. Wednesday marked the SIX month anniversary of my last surgery. I'm kinda wondering if this wound will ever heal, but oh well. He continues to push the surgery option to try to close up the wound, and I am continuing to hold out for no surgery. The wound isn't causing any problems, it's just annoying. I don't have any guarantee that my body would heal after the surgery to close up my wound, so I'd rather just wait it out. He is okay with waiting if that's what I want to do. I don't have to go back to see him for a MONTH now! Yay! My leash is getting longer. ;)

I told him about how yucky I've been feeling - shaky, joint and muscle pain, and now some fevers. He suggested doubling up on steroids for a few weeks. After leaving his office, I decided it would be best to call the Rheumatologist peeps and get their take on what I should do. After all, Dr. Saturday is a Colorectal Surgeon, but the Rheumy specializes in arthritis. My arthritis is definitely flaring. I've been blaming the weather and stuff for the past couple weeks, but even though it's beautiful outside, I'm still swollen and hurting.

So I called on a Friday afternoon before a holiday to see if they could help me. Greaaaaaat timing. ;) Thankfully, I got the awesomest nurse ever, Dana. She got me an appointment on Monday morning at a time when the PA, Rhuemy Dr, AND Endo Doc will all be in the office. That way, everyone can weigh in on what the best course of action would be. We are thinking of a short course of prednisone (a steroid), but we need to see what Endo Doc thinks about that due to my steroid issues. This is a rarity for doctors to put their heads together, so I really hope this works out. Mad props to Dana for setting this up!

Happy news.... my friend Patt, who had her 5th surgery of 2011, is going home tomorrow! She looks fantastic and I pray that this surgery restores some quality of life to her! Today when I visited her, I asked how many surgeries she's had for her Crohn's disease... she thought this was #18. Um, makes my 4 surgeries look pretty puny! She has been through so much.

And some verrrrrry exciting news... My friend Kendra was declared CANCER FREE today!!! Praise God! She has been a complete trouper and tough as nails throughout her chemo. Her feisty, persevering character has shown through as she tackled tests, treatments and side effects head on... all while continuing to hold down a job. She still has to do one more treatment to help her stay in remission, and she will have to have labs and scans with annoying frequency, but what GREAT news!

Today I'm thankful. God is good. He is so good. Much better than we deserve. From cancer-free friends, to release from the hospital with hopes of a better life, to doctors and nurses helping me take care of my health issues, to the beautiful weather... I am so blessed.

Hannah ;)

Tuesday, December 27, 2011

Steroid Woes

As many of you know, I am adrenally insufficient - my adrenal glands do not make the small amounts of steroids that are necessary for life.

The steroids your adrenal glands normally make keep your body functioning - they control your heart beat, blood pressure, blood sugar, response to stress, etc. When you take large amounts of steroid medication (like I did for my ulcerative colitis), your brain quits telling your adrenal glands to make steroids because it would be superfluous. Usually, your brain and adrenals wake up after you taper off the medication... but mine did not. This means that, in order to perform vital functions (like, you know, maintaining a good blood pressure) my body depends on the steroid pills I take three times a day.

Be Alert. The world needs more lerts. 
We discovered I was adrenally insufficient when I was trying to taper off steroids after my surgery in 2009. I got so sick - I was basically having adrenal crisis after adrenal crisis. My muscles were so weak I could barely walk, my whole body shook, I was dizzy, sweating, hurting, nauseated, and non-functional. I had to get a liter or two of IV fluids every other day, and even with this, I was so incredibly sick. After a very scary episode in February 2010 where I went completely unresponsive while getting IV fluids, they upped my prednisone to 40 mg and added in another steroid (florinef) to get me stabilized. This was a very extreme move to put me back on a high dose of prednisone, but the endocrinologist I was seeing didn't know what else to do (and apparently didn't know what he was doing... but that's another story).

Here's a Sciencey picture. This is hydrocortisone.
It's helpful if you speak Organic Chemistry.
In April 2010, I saw a new endocrinologist. After changing to a faster acting steroid, hydrocortisone, 3x/day, things began to settle down, although I was still on about 3 times the amount of steroids that a normal person my size should need (yet I had no symptoms of having too much steroids). I continued to have adrenal crisis episodes here and there, some of them requiring a trip to the ER to get rehydrated and back on track. My issues were very difficult to control or predict, which was incredibly frustrating for everyone involved. With my tummy, we never can tell how much of my pills I absorb from day to day (or even from hour to hour), which results in very inexact blood levels of steroids. With help from meds to slow down my tummy when it's acting up, and permission from my doctor to double up on steroids anytime I suspect I'm not absorbing or that I'm starting to have an adrenal crisis, we finally reached a much more stable place with my adrenal stuff.

This, my friends, I am not.
This spring, I was able to taper down a bit more after my third surgery. I now take an average amount of steroids for my size. Now it just remains to be seen if I can get off steroids altogether. A few weeks ago, I began an attempt at tapering on the steroids again. I took a bit less steroid every two days. Each day, I felt a bit worse, culminating on the Sunday morning before Christmas when I totally crashed - dizzy, shaky, etc - and decided that the taper wasn't working. So I went back to my normal dose. Then I got a cold. I ended up completely crashing on Tuesday and Wednesday, feeling just awful. Finally, on Wednesday before Christmas, I realized that I probably needed some extra steroids. I took some, and felt like a new woman within 45 minutes. Note to self: I need to take extra roids when I get sick. Your body normally makes extra steroids to cope with the stress of being sick. Since my body doesn't make steroids at all, I have to take extra roids when I have surgery or even dental work done. You're not supposed to have to take extra 'roids for just a minor cold, but apparently my body plays by its own rules, as we all well know. ;)

Unfortunately, since then, I have continued to struggle with off and on shaking, dizziness, fatigue, feeling like my heart is pounding, etc. My arthritis has been flaring and my knees resemble large citrus fruits at times. ;) As sometimes happens when I flare, my eyes are super dry and irritated, so I just pour eyedrops in my eyes and can't wear my contacts. This truly causes me great mental anguish because then I'm doomed to wearing my dorky glasses and no make-up, which is just socially devastating. ;P

I'm also having a "pain flare" with my muscle pain, too, and nothing is really helping the pain. It's so weird because I'll have some good hours where I feel fine and do normal stuff, then all of a sudden, I'm hurting really bad and can't stop shaking and just curl up in a little ball. Now I'm dumping off and on, too, which really isn't helping matters! I am not sure what is going on, but it's annoying! ;) Hehe. Need to tell my body to settle down! Seems like I had a similar pain flare last December/January, so maybe I'm allergic to winter? May it never be!

Hannah ;)

Wednesday, December 21, 2011

An Empty Cup

This week finds me in a pretty good arthritis flare. I am really achey and have spent a LOT of time sleeping, but I'm still wiped out and hurting. I'm also fighting a cold, which probably doesn't help! I don't mind getting "normal person sick," because I know that I'll actually feel better in a few days!

I went to the pain doctor yesterday, which turned out to be a very interesting and unusual experience. I arrived, signed in, and started reading. I'm re-reading the Lord of the Rings books at doctor's offices this month. On Monday, I was waiting at the chiropractor, and he called me back JUST as Eowyn was being threatened by the Nazgul king... yeah, great timing, chiropractor! Anyways, at the pain dr, the waiting room began to fill, and not a soul was called back. I was called back up to the desk, because apparently they think I have no insurance (see Monday's post for more gory details), so they wanted to copy my card for the 4th time. I also mentioned that three people were standing up because there were no more chairs. I mean, this is the pain clinic! Three people had canes - they obviously hurt and need to be able to sit! So they brought out more chairs. And then, still more chairs as more people arrived. I looked around for a water fountain - alas, there was only an empty water cooler - and I had forgotten my water bottle.

An hour went by (Aragorn, Gandalf et al confronted Sauron at the Black Gate), and one person had been called back. I went up to the front desk and politely inquired about how long the wait would be. The nurse told me that the doctor wasn't actually in today, so the nurses have to take everyone's vital signs and then give them their prescriptions. I thought, don't they take our vital signs and give us the prescriptions every time I'm here? Anyways, eventually (after Samwise rescued Frodo from the Tower of Cirith Ungul) I got called back. There were THREE nurses back there, seeing one patient at a time. So I'm really not sure what the delay was! They took my vitals, then asked me for a urine sample.

"What, you're drug testing me?"
"Yes, what narcotics are you on?" asked the nurse.

Oh. They aren't kidding!

I told her, then said, "Um, there may be a small problem. I don't think I can go."

That morning, I was dumping a bit, so I had to take my meds to slow down my stomach, which has the side effect of slowing down my already dysfunctional bladder and drying me out. I also had not been drinking water. I also just don't pee very often. I tried valiantly, but returned with an empty cup.

The nurse frowned and informed me, "The doctor said we can't give prescriptions without a urine sample."

"I'm really sorry! I didn't know I was going to have to give a sample... Can I come back later?" Then I started spilling my life story. "I am missing seven and a half feet of intestine and I have bladder issues and so I really only pee twice a day. If I drink more, it just comes out my ostomy. I'm really sorry, but I can't go right now, but I can go drink a bunch and come back this afternoon!"

The nurses all stopped what they were doing and stared at me. "Oh, honey, we will just make a note in your chart! We won't inconvenience you, you poor thing! You can always give a sample next time."

Way to milk your issues, Hannah! ;)

Please pray for my sweet friend Patt, my guardian angel on earth. On Tuesday, she underwent her FOURTH surgery for her Crohn's since March. She has had such a terribly tough year and needs all the prayers possible. Please pray especially for good pain control and encouragement for her heavy heart.

Hannah ;)

Monday, December 19, 2011

If You Give Your Insurance Info to 7 Doctors...

Q: If you give your new insurance info to seven doctor's offices by phone a few days prior to your appointment AND have them copy your new insurance card when you arrive in person, how many of those offices will bill the correct insurance company on the first try?

A: One. As for the other six:

One will correct their mistake after you call to give them your insurance info for the THIRD time.
One will state that you have no insurance coverage (while still mysteriously being able to bill your new company, might I add).
Two will have a receptionist tell you your old coverage terminated and they never received your new info, even though you watched this exact same receptionist scan your card at your appointment two weeks earlier.
And the last two will continue to bill your old insurance for 5 months, regardless of how many times you call their office and give them your new insurance info again.

I've described in other posts the amount of time I spend on the phone. Here's how the process goes:

1. I get a statement (not a bill) from the doctor's office. This lets me know what charges they are submitting to your insurance company. I check to make sure that: 1. I actually received the services that they are charging for (you would be shocked at how often they bill you for stuff that never happened!) and 2. they are billing the correct insurance company. I usually have to call them multiple times to try to resolve issues with either item 1 or 2 (frequently BOTH!). After several phone calls, they send the statement with the correct charges to the correct insurance company. Whew!

2. Now my insurance must processes the claim. Then they send me an EOB (Estimate of Benefits). This typically states that this claim has been denied coverage for some (false) reason or another. Then I must call the insurance company. I site chapter and verse from the Policy Brochure the reasons that this claim should be covered. The customer service rep just parrots back whatever the EOB says. I ask to speak to the supervisor, who does the same. I note their names and the date. Just to make sure, I repeat this process at a later date after a session with my voodoo doll.

3. When I still get no help from customer service (I have yet to have any problem corrected over the phone), I write an Appeal letter. This is a somewhat involved process of siting 16 digit claim numbers, CPT codes, revenue codes, and Policy Brochures. I season the appeal with logic and common sense, something that United Healthcare seems to lack. ;) After a month or so, I get a letter back with a ruling one way or the other. God has granted me a pretty high success rate in
these appeals letters. If they rule to cover the claim, they reprocess everything, send me a new EOB, and send the doctor payment.

4. Then, eventually, the doctor will turn around and bill me for the remainder. I honestly have rarely gotten to this step because I've been going through the above process for every. single. doctor's visit, test, lab, or wound care since I changed insurances in AUGUST.

I'm not sure how the health care system is supposed to work... but I'm pretty sure it's NOT like this! This has been an exercise in endurance, patience, and persistence!

Tuesday, December 13, 2011

Catching Up...

Hello, hello! Um, I feel as though I need to reintroduce myself, since I've taken such a long break from blogging. I have actually written a couple posts - I'd compose them, then as I went to publish, my computer would disconnect from the web browser. I'd get frustrated and go do something else, forgetting to go back and re-edit and post. Yeah, I really have problems focusing when I... um, hey, where was I? So anyways, I'm back! ;)

The other thing is that I don't really have anything new to say. I still have chronic autoimmune illness (surprise, surprise!), and my wound still hasn't healed. I made some progress for a few weeks, but now I'm plateauing again. Dr. Saturday cauterized (chemically burning to promote healing) of the wound on several occasions. After a few rounds of this, and a possibly overzealous cauterization by Misinformation, I told him I thought I could cauterize myself at home every three days. That way, I could make the long trek to the hospital every other week, instead of the semi-weekly visits he envisioned.

So now I get to cauterize my own perineal wound. Some of you may be wondering how I am able to cauterize a wound that lies deep in the crags of my tush. It's sort of a contortionistic/circus performer sort of event involving a full length mirror as I lie twisted on the floor looking somewhat like a puppy chasing his own tail. Note: this is not a picture of me. I actually lay on my side. And I'm brunette.

I cauterize the wound with silver nitrate sticks, which look like matches on long sticks - here's a pic I got off google images. If you wanna buy some for home use, click here. I'm sure they will come in handy for all your unwanted granulation tissue personal hygiene needs.

So, now that I've added "Cauterize my own wound resulting from a surgery to remove my anus" to the list of unlikely truths I can use the next time I play "Two Truths and a Lie," I spend my free time wondering what I'm going to do with all the free time I'll have when I don't spend time each day caring for an awkwardly-placed wound.

I had a bit of drama with my belly for about two weeks, culminating in pretty severe pain on Saturday night through Sunday. It felt like my UC was coming back or something, and that combined with a partial blockage on Saturday into Sunday made me strongly consider going to the ER. On Monday morning, I discovered, after washing it, that my beloved purple water bottle was slimy inside... gross. Hmm... I scoured it with salt, baking soda, scrubbed it out with an old toothbrush, let it soak in hot soapy water for hours, then, when it was no longer slimy... threw it away. No, I jest, not even slime could cleave my fingers from my precious water bottle, so after a period of quarantine, I'll be using it again. But I will implement a daily scrub, because apparently the washing I'd been giving it wasn't good enough. Surprisingly, after 24 hours Slimy Water Bottle free, I was free from the crampy pain in my belly. Boy, did I feel awfully dumb. But awfully relieved.

My joints are overall so much better since starting the Meth. I've done 7 injections so far. My lab work is coming back spot-on perfect, and my white count is the lowest it's been since I got sick, which is FANTASTIC! No more fevers, less inflammation. I struggle with the joints in the mornings and evenings, but in the middle, it's pretty good. I still have really bad muscle pain that goes up and down, but I have lots of meds to keep me comfortable, mostly. I had come completely off my sleeping medicine beginning in August, but my pain increased to the point that I need to take it in order to actually sleep through the pain.

I am cutting back an eighth of a pill of steroids every other day. I'm on day 10 now, and I have to say I'm feeling very tired. I want to give it at the very least 3 weeks try, so we'll see how that goes!

I continue to spend inordinate amounts of time sorting through insurance papers and speaking with billing offices and insurance customer service people who can't pronounce my last name, much less explain my bill or policy to me, and generally trying to get people to do what they should have done in the first place. It's all a part of living in a fallen world, I guess! I constantly have to remind myself to be gracious, and to remember that the person I'm speaking to isn't usually the one who made the mistake I'm trying to get corrected. God is showing me that I am an impatient, angry person. I continually need His help, must be reminded of His grace, and quickly ask for His forgiveness.

Hannah ;)