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Saturday, February 19, 2011

Kids…hilarious, aren’t they?

I’ve always found them to be so. And this morning, I thought I’d share with you a few of the reasons why:

IMG_7646This is a postcard I wrote to my grandmother from camp one summer. I looked up the dates for when postcards were accompanied by 19 cent stamps, and deductive reasoning tells me I authored this little guy sometime between 1991 and 1995. I was between the ages of 7 and 11.

IMG_7647My Aunt recently found this gem in my grandmother’s things and mailed it to me. After I laughed for about 10 minutes about what a downer this must have been to receive (sorry Grandma!), I then wondered what in the world had happened back in the early 90s at Camp Bette Perot. At this point, all I remember is riding horses and discovering that M&Ms and Skittles mixed together has the most delightful flavor (though Chase would disagree, to be sure).  The mystery remains…

IMG_7648Next, we have a very generous offer from a potential future donor to our ministry. Shortly after we moved to Nicaragua, the Woodcreek AWANA kids sent us a bundle of letters to encourage us and let us know they are praying for us and our ministry in Nicaragua. I can’t help but wonder what this sweet little girl has planned for the other $400…

IMG_7650And finally, we have a note Chase received from a little boy in the Woodcreek AWANA program. I love how he translated his name to “Pedro” for us.

IMG_7649Sorry Pedro, we disobeyed your instructions and opened the card anyway. AND you guessed right! Chase does like pizza better than tacos – thank you for pre-filling in the checkbox for him.

IMG_7651This is the back of the envelope/card (creatively, it was all just one sheet of paper!) Peter (I mean, Pedro), we should all get together and share a delicious pepperoni pizza…that is, once I’m allowed to eat cheese again!

Thursday, February 17, 2011

Doctor Day Update

Yesterday was Doctor Day and Dr. Aragón was all smiles about my improvements. Most of my tests are normal, or at least improving, and I officially no longer have anemia (which was being caused by the renal failure). My creatinine level went from 5.0 to 4.9, to which I responded with a disappointed face, to which the doctor responded with “Tranquila, Calma, paciencia, you are getting better, chavalita!”. He again reminded me that it might take 2 more months for my kidneys to be back to normal. He said he has faith that I am in the top 70% who recover fully from where I was, and not in the 30% who don’t. As much as I’m learning about patience, I guess I’m still struggling with it. But still, I am thankful for a doctor who believes in me and a God who is healing me.

One thing I found humorous about Doctor Day (and one thing I couldn’t imagine would ever happen) is that my glucose level is low. The doctor actually told me to eat more sugar (WHAT? I know, right?!). I’ve been eating a lot of fruit, and the occasional Dove dark chocolate, but I’ve been staying away from most sugar to avoid the “fat, fat, fat” ness that was promised to me in the hospital. It seems to be working, because I’ve now lost 27 pounds since leaving the hospital! The wii fit says I still need to lose 20 more, but I’m just celebrating the over-halfway point right now! However, after my instruction to eat sugar, I was quick to obey, and Chase and I indulged in some delicious Ghirardelli ice cream last night. I only lost .2 pounds today, but it was totally worth it.

Most of my medicines will stay the same this week, although he did change my prednisone (steroid). The original plan was to take me down 5mg every 10 days, and I had about 3 days left at 70mg. However, when he saw some of the side effects (a rash, a couple small lesions on my leg, and some undesirable stretch marks), he got nervous and decided to speed that process up a little bit. So starting today I am down to 60mg and will go down 10mg  every 10 days until I reach 30mg, where I will stay for awhile.

I’m discovering that it is actually really hard to eat healthy (along with keeping the house clean and doing other things I need/want to do). My days are very full. Making everything from scratch takes a lot of time – time that I’ve never really had before with working full-time and other commitments. I am enjoying it, but also wondering how in the world I would do this if I was working also (or even if I had kids to take care of!). Today I made a fruit salad, and I cut up a cantaloupe, a pineapple, strawberries, and green and red apples.

IMG_7677It tastes delicious and I’ll be enjoying it for the next few days, but it took a good hour or two to prepare it. (Thankfully, the most recent episode of Biggest Loser kept me company while I labored!)

IMG_7678My lunch today was a grilled chicken salad and the fruit salad. The grilled chicken salad included lettuce, carrots, tomatoes, green onions, craisens, chicken and maybe a little Caesar dressing (oops…I cheated and had some salt, but I just love Ceasar dressing!) Yesterday was vegetable chopping day, as we had the salad for dinner last night (leftovers are my favorite!) so I didn’t have to do all of that today as well, which was nice! Tomorrow I think I’ll make some black beans – I’ve never not used a can before (silly sodium restrictions), so we’ll see how that goes.

So that is the update on me. The Lord is good and he is teaching me so much. It feels like I’m re-learning how to live. But He’s here. My eyes have been opened and I see who I was and I see who I want to be, and He’s walking with me…the whole way. It is hard and I do get scared, but He tells me *“Cease striving, know that I am God. And I’ll be exalted in the earth. Just be still, don’t you worry, I’ll be here. I will strengthen you, surely I will help you. Just wait and trust in me.”

*lyrics from a song titled “Cease Striving

Friday, February 11, 2011

To smile and not to smile

It’s been a few days, so I wanted to update you all on how I’ve been doing. I’ve had a few not so great days, and a few really wonderful days. It’s definitely an adventure figuring out what life looks like now! First, I’ll share some things from my “list of things that makes me smile” category:

- Since leaving the hospital, I’ve lost 19 pounds! Can you believe it? Probably most of it is water weight or lost muscle mass, but certainly part of it must be that instead of the on-the-run-usually-fast-food lunches I was eating before, I eat this for lunch (or something like it):

CIMG0216my carrot, apple, fried egg on a piece of toast lunch

- Also, steroids are supposed to make me hungry all the time, but I really don’t feel hungry that often at all. Sometimes I just eat lunch because I need to eat with the pills I need to take. So thankful for this small blessing!

- This one is incredible. As of yesterday, I have rediscovered my ankles! My actual ankles – the ones I had a month ago before I got admitted to the hospital! I can’t tell you how wonderful it is to have them back. (Okay, they are still swollen the slightest bit, but no longer can they be called “cankles”!)

- I went to the Doctor on Wednesday and although my creatinine level went back up a little (from a 4.5 to a 5), he was still pleased with the rest of my tests and happy that I was staying relatively stable. As of yesterday, my steroids have started to decrease (from 75mg a day to 70 mg) for the next 2 weeks, and they upped my Immunosuppressant from 2 grams a day to 3 grams a day. Thank goodness Dicegsa has a large supply for us, as I’ll be going through a box of 50 pills in just over a week now! (My current total pill count is 21 a day!)

The things that don’t make me smile?

- I asked again about going back to work/kids services at my appointment on Wednesday, and the doc said not for at least another month. I haven’t seen the kids or volunteers since the beginning of December, and I’ve been missing their sweet smiles, wanting to give Lindley a giant hug and hear Alma’s adorable laugh as Chase & I trap and tickle her. To find out how Diana is doing and catch up with Bertha. I don’t mean to complain, but 3 months without seeing any of them seems like a cruel punishment to me!

- The bad days. I haven’t had many, but the few I’ve had are, let’s just say, not my favorite. A bad day may include some sort of side effect from one of my medicines – anything from fatigue to nausea to insomnia to all-of-my-skin-is-peeling-off…among other things you don’t want to read about! :)

Really, that’s about it though. As for updated prayer requests, I would appreciate prayer for continued healing for my kidneys. I have another appointment next Wednesday and would like the direction of my creatinine level to go in the opposite direction! Also, pray for wisdom for me as I learn and decide where I should and should not go and what I should and should not do. I want to get out more, but I also want to be careful not to get an infection of any kind. Pray for me to be able to use my time wisely – to be productive, but also diligent to rest (for the sake of my body and my soul). And continue to pray for strength – I’m feeling stronger almost every day, but still have a long way to go!

Some new scenery

In an effort to make our main church room look better, feel better, and sound better, we as a ministry have introduced a number of improvements of late.

1) Movable room dividers. We have a number of 8’x10’ metal frames covered in thick black fabric. This helps the room feel a little smaller during Nuévete (the youth program) so that attention is focused more easily on the stage. It also helps a little bit in reducing echo—which as you can imagine, is greatly needed in a large, rectangular, concrete room.

2) Stage wall backdrop. Where there is bright blue carpeting on the wall behind the stage, we have hung black curtains from floor to ceiling to cover it. This also helps in focusing attention on the people on the stage and reduces a little bit of echo. Plus it just looks cool.IMG_7658

3) Sound booth table. The table in the sound booth that holds the mixing board and the computer that runs the slideshows had been in need of replacing for some time as it was badly warped and wobbly. The new one that we have is a little bigger and also a little lower so flying soccer balls during kids service won’t hit the computer and all the equipment won’t shake every time someone touches the wall.

4) Stage lights. This speaks for itself so I’ll just attach a picture of them when they were being installed so you can see what they look like. Maybe someday we can post a picture of them in action.IMG_7654

Monday, February 7, 2011

Normal.

What I’m not. And what I want to be. But strangely also, what I don’t want to be. Let me explain. I often find myself longing for the life that used to be. The life of a “healthy” person. Life before Lupus and all that has happened in the last 2 months.

But that is not reality. Now I am forced to be way more intentional than I ever desired to be. To rest well. To eat healthier. To stay fit. To be careful. To focus on my health. I used to eat what I wanted, stay up as late as I’d like, work out when I felt like it, and never really think about germs/pills/shots/doctors/medical terms. These are not bad things; they just require a lot of me. I prefer the easy-going life from before. Right now anyway.

The thing about Lupus is that you can’t necessarily see that the person who has it is sick. When I’m out, I look “normal” (besides the mask, anyway). You wouldn’t know by looking at me that I have renal failure, that my immune system is hyperactive, that I have a chronic illness that can cause a variety of problems the rest of my life. And part of me is really thankful for that. I don’t want people to look at me and think “I wonder what’s wrong with that girl.”

But the other part of me wants to be understood. For people to know that my life, my limits, are different now. I’m not the same as before, and I can’t do everything the same as I used to. I don’t want to use Lupus as an excuse, but I do want to be wise (I certainly don’t want to end up in the hospital again anytime soon!). I don’t want to annoy friends and family by talking about my sickness all the time, but it is part of my life now, and I don’t want to have to pretend like it doesn’t exist.

I think I’m contradicting myself because I’m saying that I don’t want to be viewed as “sick” BUT I want people to know that I am sick. So I apologize if you are confused. These are the thoughts that were going through my head between 5am and 6am this morning.

Chili cook-off

Russell Brothers Take Chili Cup

chili cup     In an unexpected turn of events, Chase and David Russell—brothers and neighbors in Managua, Nicaragua—combined efforts and “good ol’ Texas know-how” to win the annual Superbowl Chili Cook-Off hosted by International Christian Fellowship on Sunday.

     Two factors are worthy of comment in this outcome: 1) the cook-off of 2010 was shrouded in controversy as a late (and therefore “fresher”) entry took 1st place, pushing the Russells’ chili to 2nd, and 2) Chase had originally described their 2011 entry as “forgettable” and both brothers had feared it would not be a “contest winner.” This came on the tail of much debate between the two regarding matters such as whether or not to include beans, how much chili powder to add, whether or not the beef used was too tough, the advisability of including sausage, how many onions to add and at what point in the cooking process, as well as other things.

Thursday, February 3, 2011

how you can help: the search for great recipes

In case you haven’t figured out by now, my days are fairly mundane. I force feed myself water all day, think about brownies and cheese while eating carrot sticks and watermelon, record my blood pressure, swallow an absurd amount of pills, alternate between being on my feet/earning cankles and propping them up on a bajillion pillows to bring them back under control, and attempt to will my creatinine count to lower itself…boring, boring, boring. Many of you have been home all week with snow days, so you know that there aren’t too many exciting things to report when you spend all day at home. SO, that being said, I think I’m going to expire the “Day posts” (Oh, and sorry about the boring titles the last 20 days – maybe lupus causes a lack of creativity as well?)

Moving on. Many of you have e-mailed, called, or messaged me and said to let you know if there is anything you can do to help. Well, up until now, prayer was really all I could think to ask for. But today, I got to thinking. Many of the recipes we like to cook involve my newly restricted food items – sodium, dairy and red meat. Recipes such as nachos, tacos, baked potatoes, lasagna, enchiladas, macaroni and cheese etc. Even our favorite fish recipe has parmesan cheese in it. The other thing is - we love delicious food. (Who doesn’t really?) But I’m having a hard time thinking of many delicious recipes that don’t involve the items bolded above. This is where you come in. Do you have any recipes that you love that you could pass along to me? You may not, because let’s face it, cheese can really go with almost anything. But if you do, and you have a few minutes (what are snow days for after all?), will you e—mail me your favorite (healthyish) non-dairy, no-sodium, red-meat-less recipes? Also, if you have any tips or recipes on healthy, but delicious baking, I would love those as well!

Wednesday, February 2, 2011

Day 8 at home

Well, good news! My creatinine count dropped from 5.7 to 4.5! (I’m glad I’m not still waiting for that 3, though – I would be on day 20 in the hospital!) The doctor was happy with my progress, even though I am technically still in renal failure. There are a couple things I’m disappointed about. One is salt. When I left the hospital, he said low salt. Last week, he said I could add salt back in. This week? NO salt. I have to admit I’m grieving the loss, especially after a week with a little more flavor in my life. This means no cheese. But he thinks the salt could be inviting the wretched cankles, so alas, I will submit, and attempt to cut out all sodium.

Also, I have developed this small red spot on my leg that he fears could be the start of shingles. There’s only one for now, but if I get more, I’m supposed to call him immediately. Hope it turns out to be nothing!

My heart rate has been consistently fast, so he took me off one of the blood pressure medications altogether – now I’m down to 2. One less pill per day is fine with me.

Though he still does not want me to go back to work, he said I can go out occasionally if I am in well-ventilated places and there aren’t a ton of people there.

Oh, Dr. Aragón did manage to call my nose ugly at some point during the appointment, not to be mean - just an observation, of course (and not totally out of context either). And who can blame him? It kind of looks the same as before I had surgery on it a year and a half ago. (To read about that, go here, here and here).

I go back next Wednesday, but this time to Dr. Granera, the nephrologist. This week? More waiting. More tests. More praying for those kidneys.

Tuesday, February 1, 2011

Day 7 at home

It’s late and I’m tired, but I wanted to update you on some highlights and ask you to pray for my tests and doctors appointments tomorrow.

So, with no further adieu: the highlights of the day.

- I slept really well last night – for almost 8 hours! The insomnia thing is kind of doing an every other night pattern, so I hope I can break it and sleep well tonight.

- Though gardettos are nowhere to be found in Nicaragua, I did get to skype in to the staff meeting, and I loved it. I may be abnormal, but I love meetings. And it was fun to feel like a part of the staff again for the first time since December 14th when we left for the States! I miss our team there, and I miss the ministry. It was fun to plan for the coming year, and I’m excited to see what the Lord will do through  One by One, Camino de Vida, and The Refuge Project!

- My mom left this morning, so today was my first day on my own. I made my own lunch, filled my own water bottles, and did all the things my mom has been doing (well, I didn’t clean anything) to take care of me while she was here. And it turned out okay!

- I went walking with Kristina tonight. She is still recovering from the C-section so we both could only walk for about 10 minutes, but you have to start somewhere, right? With my new need to stay out of the sun, I think the time we went (7PM) will be perfect to start gaining some endurance back. Who knows? Maybe tomorrow we will go for 15!

- I also got to skype with some close friends, which is always wonderful. I love skype! If you don’t have it, you should definitely get it.

So that was my day in a nutshell. As for prayer requests?

- I am taking the blood tests at 6:30 in the am and then going back for my appointment at 4:30 in the pm. I’m hoping for good news – good levels of phosphorus, sodium, calcium, etc. And also for my creatinine count to have gone down. It has been going up slowly the past couple of tests, and I’d really just prefer to reverse the process and get back on the track we started on!

- Will you also pray for our communication? Normally, I understand his Spanish fairly well, but I talked to him on the phone once this week and discovered later that I had completely misunderstood everything he said. (I thought that Dicegsa was the name of a drug I could take if I couldn’t find the CellCept, so I sent Chase looking around for the “drug” Dicegsa – turns out it was the distributor that might have the CellCept! Oops.) Phone Spanish is always more difficult, it seems.

Until tomorrow then, friends. Adios!