walking with God.

I'm working on a Bible study with some friends from college. This past week, I was reading something about how often times when we pray we ask God to bless us. We ask for God to join us on all of our journeys, plans, and events that we've got booked for the next 3-5 years. However, this may not be the best way to pray at all. It would be so much better for me to ask if I could walk with God each day, rather than asking Him to walk with me. He's always longing to be with me, that's not the issue--but isn't it so much better for me to be seeking His footsteps to follow? Um, yes. :)

Yesterday, our friends were over with their daughter again, learning to swim in the pool. She was horribly afraid to get off of the stairs, afraid of what might happen when she could no longer touch the ground, even though she was wearing her life jacket and her daddy and Marcus were both close at hand. So too, we are often paralyzed with fear-- afraid to step out in faith for whatever might be next.

God promises to offer a "lamp unto our feet and a light unto our path."-psalm 119:105 I take this to mean He's going to shed just enough light for us to take one step with certainty. We can confidently plod along, one step at a time.

He'll let us know just what the next step might be, where and when we need to take it. Yesterday was tough, but I promise to be with you, Brelin. Take a step.
Today was tough, I hear your cries for healing, and I love you. Take a step.
Tomorrow, I'm praying that God's made the footsteps in the sand really deep for me already, so that they're really easy for me to follow, and...S-

put in his place.

Our friend, Abby, came over with her 3-year-old, Kenzi, and her little boy, Ty, the other night for dinner. Marcus was playing on the back patio with Kenzi, checking out the flowers, the birds, and the sunshine. Our neighbors came home, and we heard Kenzi's very loud chirpy voice say,
"Hi! I'm Kenzi! And this, (pointing to Marcus, with an emphatic pause) is my PONY."

Abby and I were inside chatting, but heard the whole thing and we just about died laughing. What do you say after that?! :)

I'm still doing reasonably well. Yesterday was pretty rough, but today seems to be going better. Thanks for your prayers, and love.
brelin

a western washington confession

It's official. I've become "one of them." Yesterday, Marcus and I went to the pool at our condo, stretched out our towels and basked in the glorious rays of sunshine. It was a mere 71 degrees. We didn't brave the frigid waters of the pool, we just sat and read our books trying to absorb natural light. Ahhh, how far I've strayed from my eastern Washington youth. My mom used to have a rule that we couldn't even ask to wear shorts if it wasn't above 60 degrees. And I wasn't allowed to go swimming unless it was over 80. I think if I waited for 80 degrees in Seattle to go swimming, I might never go swimming. EVER.

I also have to report another horrific Western Washington moment. It happened yesterday evening when I ran outside onto the back patio in my bare feet to put the cover on the bbq, as I was muttering under my breath about why Marcus hadn't done it already...when something cold and squishy touched my toe and I gasped/squeeled/pulled my foot off whatever it was and started doing a freakish dance on the back porch until I found the culprit--a slug. SICK. I touched a slug with my clean, bare foot. egh. I came running into the house and could barely speak I was so disgusted. Finally I got the whole story out, and told Marcus that we needed to move to where it was warm, sunny, and where there are no slugs. This place is clearly awful. No wonder I'm puking!! (just kidding)

Anyway, I thought I'd share a couple of little stories before I got to the medical report.

I'm keeping down fluids much more consistently I think. I don't feel like I'm teetering on the edge of destruction so much anymore, BUT I am feeling the side effects of my medications quite a bit. Read: I get dizzy frequently from them. I am doing my best to adjust to this new way of life, but it's hard to slow down, and not do "fun" things. I'm also not driving far consistently because of the meds, which is a little frustrating, as I'm having to depend on others...but it's minor in the scheme of things.

My friend, Michelle and I, went to Crossroads Church in Bellevue this morning. The pastor in his sermon said, "If your pain and illness is for God's glory, than it's all worth it, right?" I found myself nodding. I guess that's a good sign. I'm not really sure what God's doing with all this vomiting, but I sure hope He's being glorified in and through it all.

because somehow this makes sense?

Last night, after a fun-filled day of rafting Marcus came home and was hungry. We walked to the Farmer's market, and got some Asparagus and yummy cherries. We threw the asparagus on the grill, and he ate the cherries as an appetizer. I thought I'd make some teriyaki chicken and rice to round out the meal. It looked really good, and I was super hungry, so I thought I'd eat some. I figured, worse case scenario, I would just throw it up. But, guess what happened instead?! I totally kept it all down!!! It was amazing!

I'm still shocked.

:) I'm pretty sure I just quadrupled my caloric intake for the month.

And, to top it all off, it's been sunny in Seattle for 3 days in a row. I think I'm in heaven.

Love
brelin

doing good with liquids!

I'm doing REALLY well with liquids today. Yay! Thank you, Jesus. :)

Awesome.

I just wanted to post this super fun news so that you can all celebrate this evening.

brelin

ignoring the doctor, and other new things.

First of all, happy Father's Day to all of my pops out there: Dad, Dad, and Dad-in-law. I love you all!! Thanks for the love, support, and witty remarks that have helped to shape me all these years. You are all such a delightful blessing to me.

Secondly, I want to state, for the record that I am not typically a rebel. I abide by laws, rules, and regulations for the most part. I have almost always obeyed authority figures, and I still even feel a little guilty when I don't tell the whole truth to my mother. That being said, I blatently disregarded the advice of my physician on Friday. I had called the doc again, after a follow-up phone call from the hospital reminded me of my need to make an appointment. While speaking with the nurse about the care I received a week ago, she prompted me to call the GI doc again, and let him know that my success and progression through the land of "full liquids" was leaving a little something to be desired. I called to ask him what I should do.

The doctor (via his really nice nurse) told me that I needed to get my butt back to the hospital, where he could put another NG tube in, and let my bowels rest for a substantially longer period this time. So that we could "do it right this time." I told them that I appreciated their concern, and that I REALLY did not want to go to the hospital again, and I certainly did not want another NG tube. So, instead, the doc called in a couple of new meds for me to try at home.

I have felt really naughty all weekend, knowing that I "broke" the rules by not listening to the doctor. In my defense, Marcus said that I didn't have to do what the doctor said this time, and that only I really know how bad I feel. I told him that I didn't feel bad enough to go to the hospital...so we had ice cream cones, and went for a walk instead.

I'm still vomiting most everything, but there seem to be little glimmers of hope every so often. I kept down half a container of yogurt the other day, and today, I've digested some cereal. Just enough to keep me guessing, it seems. I think that I'm doing a little better with fluids today too, so that is positive. My BP is still running pretty low (I assume, since I've been more dizzy than normal), we believe it's a low volume issue. The only answer to that problem is to keep more fluids down...which is going to happen soon.

Me and my little rebellious spirit are off to bed now :). Thank you all for your prayers.
brelin

sloooooooooooooooooowly

I'm not very good at doing anything slowly. I don't like to wait, and I'm impatient when I'm not good at things right away.

I am not good at digesting. This is frustrating, and something that I have to re-learn to do, at a pain-stakingly SLOW rate. I can't gulp, I have to sip. I can't run, I have to walk. I can't go from the downward dog position in yoga class to standing straight up without getting dizzy and feeling faint.

I also like to have plans and make plans. This is something else that I need to re-learn to let go of. I can't meet my friend to chat when I can't drive because the room is spinning around me. This is also frustrating.

I KNOW that God has a plan for me, and it's much better than my own plan. It PROMISES this is Jeremiah. However, I often wish that God would include me on the next memo about WHERE and WHEN the plan might be taking place, and all that it entails. I want to look forward to whatever it is that is going to be. Unfortunately, that is not how it seems to be working. Instead of looking ahead to the future, God is asking me, "Brelin, will you be faithful to me right now? Right here, in this time, when you are too weak to go at life in your own power? Will you allow ME to be your strength?"

I think that is what I'm wrestling with the most right now. I can't just be stubborn and get through this battle. I have to, again and again, release my will and uncurl my fingers that are tightly trying to grasp at control--and let God have the authority in my life, in this disease, and in all of my plans for the future.

Yes, Lord. I will trust you today. I will ask for help when I need it. I will not try to muscle my way through the healing process. I will give myself grace when I need to rest. I will relinquish control and authority over my body, this horrific disease that I'm fighting, and all of my plans for the future. And, God, just one more thing...please help me to remember that I said all this tomorrow, when I try to take it back. :)
Amen.

cautiously optimistic

I remain cautiously optimistic about my health. I'm throwing up much less often than I was previously, but I have not stopped vomiting completely. I feel like this is good progress, although it is not the ultimate goal, of course.

I'm working through a bible study with some of my friends from college. We skype in together to discuss the week prior. I managed to fall dreadfully behind, and was dutifully trying to catch up before we have our "meeting" tonight. I started out reading the story where God says, "I am the Potter, you are the Clay." It's really a nice analogy, thinking of how God shapes us and molds us to something beautiful and whole. However, it takes a lot of getting mushed and smashed for us to get there. I know, and trust, that God can use all of this suffering that I'm going through to His glory. I just wish I knew how long that it would all continue. I remain in His hands, and hope that this transitional process will go smoothly, and I pray that it might be over soon. I think back to my own dreadful ashtray creations in elementary school, molded proudly out of clay, for my mom who doesn't smoke. I hope that God will treat me much more gently, and that I will be tasked with a higher purpose than the paperweight I made. :)

It's wonderful to be home. My bed has never been more comfortable than it is right now. It is a privelege and a blessing too, to have a loving husband by my side, who gently comforts me as the nights are long and full of pain.

Thank you to all of you who read and pray faithfully for me. You are a blessing.
brelin

home. ahhhhhhhhhhhh.

It seems that the horrible NG tube worked some magic on "retraining" my stomach. I was released from the hospital after being puke-free for 2 days. (yes!!) So far, I've taken in a small nonfat yogurt container, and 3 bites of cream of wheat. Water is staying down with small sips also.

Before I left the hospital, he upped my NG tube drip to 40 mL/hour, which is a couple of Tablespoons per hour. So I just have to eat that slowly and carefully for the next week or two until things get under control and my body thinks "digest" rather than "puke".

He's put me on some drugs that make me a little dopey, but just in the morning, so I can live with that.

I'm cautiously reporting that I feel okay today. Not terrific, but do-able.

I guess that is a good start. :)
brelin

hey there race fans!

I'm actually writing with pleasant news today!! While Dr. Schneier was optimistic abour the NG tube feed, I was less than excited about it. However, it seems to actually be working! They doubled the amount of "food' they were giving me, so it's like I'm digesting 40 mL per hour. That's a few bites every hour! I haven't actually tried with food, and I'm anxious to get out of the hospital. I agreed to stay until Friday, at the doctor's urging. Side note: apparantly the NG is not supposed to be uncomfortable. Perhaps I'm a big whimp, but this thing hurts really badly. Not to mention, that I vaguely resemble an elephant, with a large trunk and a little body.

Last night after the doctor knocked me out with some amazing medicine, I slept well; until the nurses start grabbing stuff from all around me and say, "you have to move." It is 1:30 am. Really? They couldn't have figured this all out during the normal waking hours? Hmph. It was rough getting back to sleep, but I was able to sleep in a bit.

Well, tomorrow's the day of freedom!! Sorry, Maya, that we had to miss your party! Maybe we can see you really soon to give you your presence!

Lots of love, and pray for sleep and healing--
brelin

wednesday and the epigastric tube

This morning, Dr. Schneier was less than impressed by my progress. Meaning: he has decided to completely remove me from everything by mouth, and slowly drip antiseptic and 1 T. of nutritonal drink each hour through an epigastric tube. For those of you not schooled on medical lingo, and epigastric tube is a small tube that runs up your nose, down the back of your throat, and into your stomach. For those of you who have experienced this, it is one of the most painful procedures that you can have. The doc is hoping this will retrain my stomach, as there will constantly be food in it that it will have to get used to. Perhaps by overwhelming the stomach, the food will just vote to go down and digest instead.

I'm really having a hard time battling the mental aspect of pain and nausea today. Please pray that my body does not reject the tube feeding, and that I might be healed completely with this procedure. Also, please pray that my spirits will be lifted, and that I will feel God's peace and comfort today especially.

Addendum

Since my super-optimistic entry from this morning, I have been completely unable to keep anything down...liquids, jello, and my meds included.

My pain levels are atrocious, and vomiting is again out of control. My nurse paged the doctor this afternoon to see if I could switch back to some of my nausea/pain meds by IV. He said "no", since I wanted to get out of here soon.

Ugh. I'm a little frustrated with myself for being so ambitious. Don't worry, Marcus has scolded me properly for jumping the gun. (*just for the record, he thinks "counseled" is a better word than "scolded".)

the update,

Well, lots of things have happened over the past 24 hours, and things seem to finally be heading in the right direction...

Yesterday morning, Dr. Schneier (my GI doc) changed up my whole regimen of medication, and started me on 6 new drugs. One steroid to increase my cortizone. One med to protect the lining of my stomach and intestines. Nitroglycerine patch to relax my intestines, and help with the pain. A low level anti-depressant at bedtime to help me sleep, make me hungry, and relax the spasming. This was all in addition to a bunch of other anti-nausea meds, and a pain pump.

I continued vomiting all day and night, and then went to bed. I made it through the entire night without throwing up!! He removed my pain medicine pump last night, and I tolerated that ok.

This morning I had a couple of bites of cereal and threw it up, BUT have only puked once this whole day, and it's already 12:30!! Yay!! I am feeling a little cranky today, and am sort of anxious to go home, so I'm thinking this is all a good sign. Up until today, I've been content languishing in the hospital bed. This morning, I cleaned up my room, re-organized my stuff in he room, and had some fun visitors.

Dr. Schneier just came in, and I asked about being able to go home. He's going to switch me to all oral medications and see how I do. He's lowering my TPN to just 1 L per day, in hopes that will increase my appetite. He's also increasing the dose of nortripylene at bedtime, so hopefully I will sleep a bit better. He increased my dose of marinol (an anti-nausea drug like marijuana) too. If I tolerate all of this well, and seem to be stable--he said I might get to go home tomorrow!

I think that is all. Phew! I'm tired after reporting all that. :) Thank you for all of your prayers and support... they seem to working!

Many hugs and love from Stevens Hospital-
brelin

nothing really new

My cortisol level tests showed that my baseline levels are low, most likely because my body is basically starving. However, when asked to perform, my adrenal glands step up to the plate, and act as they are supposed to. This is good news, because it rules out the possibilty of Addison's disease.

I continue to vomit very frequently. I am on multiple anti-nausea meds, which don't seem to help. When I ingest nothing at all, I vomit straight stomach acid. It is painful, and causing my throat to hurt pretty bad. Today I got a small bloody nose while puking, which was a new adventure. But that hasn't repeated since this morning fortunately.

My pain levels are under control for the most part, and I sort of feel like a walking zombie... I'm pretty loopy, but it's better than hurting.

I continue to be on TPN, and they are pretty aggressively re-feeding me. My liver is playing nice right now, so they are able to put in a lot more calories than they have in the past. My docs have managed to keep me on enough meds to protect my liver during the re-feeding so that's good.

I got some cute new pajama pants from my mom, which always cheers me up. :) I've had a fairly steady stream of visitors which helps to keep my spirits up.

Marcus is doing fine. He ran in a half marathon yesterday in Portland, and is feeling fine. He's at work today, and then will be hanging out with me tomorrow.

I'm not sure when I might be released from the hospital... I don't even have a good guess. I continue to trust that God has a plan and purpose for all of this. I'm praying that healing happens soon... I'm exhausted.

more weird symptoms and still vomiting...

I hoped that the vomiting would at least be under control while I was in the hospital. I'm not really sure why I thought that would be a possibility, but I was fairly optimistic. Alas, my vomiting has continued, and perhaps even gotten worse since I've been here. I continue to puke just stomach acid when there is nothing in my tummy.

My labs came back with a new weird symptom: low cortisol levels. They are doing another test now to see if there is something wrong with my adrenal glands. I should know the results tomorrow.

I've also developed a bizarre tongue/mouth thing called glossitis. Apparantly it is from malnutrition.

I'm still on TPN (which is total nutrition), and they have re-hung my lipids bag once a day. I'm also on sugar water to get more calories in each day.

I'm pretty tired today, but holding up alright. I'm looking forward to being in my bed sometime in the next few days.

Thanks for all of your prayers.
brelin

the update

The doctor came by this afternoon, and told me what's going on. He injected my stomach and intestines with botox while performing an endoscopy on Thursday.
He changed around my medications, lowering them a bit, because I was just too groggy. My liver enzymes were initially terrible, but it seems like they've gotten those under control for today. He took away my lipids package, thinking that might have been the problem.

My blood sugar has been running low (like 61 and 69) which is weird because normally on TPN your blood sugar goes up.

I've been enjoying lots of visitors, and it helps speed the time up... The doctor told me to be up and walking more, so I've been pacing the floors with my industrial size IV cart.

I'll let you know more tomorrow.

i'm still here :)

First of all, thank you to everyone who has taken time to see me! It really helps keep the days from dragging on.

Secondly, there isn't much to report. I'm still feeling crappy, and still vomiting all the time. I'll try to post later today when we know something more.

Love you all.
brein

I'm still alive.

They started TPN last night, and my liver enzymes are already elevated. Please pray for the wisdom to heal this appropriately.
The plan for tomorrow is to have an upper GI endoscopy, complete.They also plan to put a shot of something into my stomach and/or intestines with antiseptic.

I have recently been moved up to the "big girl" iv tower, since they didn't all fit on the normal one anymore.

I'm still puking and dry heaving now, but feeling much calm about it all. They gave me marinol too :)

Hugs,
brelin

private room. :)

So, I'm in the hospital, and down to a record low weight for myself. Getting things going upon my arrival was sort of a disaster, and I ended up waiting (rather impatiently) for pain and nausea medications for about 4 hours. I'm still vomiting with no real end in sight, which is fairly frustrating.

They have started a picc line in my arm, and gave me a bag of fluids. Now, I am slowly receiving sugar in my IV and will start on TPN at 9 pm tonight. The pain meds and nausea meds are coming through, but I'm not feeling tremendous relief yet... They just gave me some muscle relaxants and more nausea meds, so hopefully those will be kicking in soon.

Thanks for all of your warm wishes and thoughtful prayers. Please pray that I rest well and that my pain will be under control soon.

blessings,
brelin