Well, I’m not sure if we actually call them “Russells” or not. We haven’t decided yet if we’re the kind of people who consider pets part of the family. In any case, my long-time dream has come true: own a cat. The plan was by default to just have one, especially because I didn’t want to push my luck with Julie (she’s more of a dog person), but the lady we got them from convinced us to take along an extra sibling for better adjustment or good luck or something like that.
At my last doctor’s appointment, I was FINALLY given permission to go back to the kids service, so after about 9 months of missing these sweet faces, I was more than ready to see them all again! Most people get one little baby at the end of their 9 month wait…I got about 200 kids! Unfortunately, I had to wear a mask.
Me: Well, you have an immune system that protects your body from infection, right?
Cisney: No (shaking head)
Friday night, I had my (now) monthly check-up, but this time with the kidney doctor, Dr. Granera, whom I have not seen in probably 3 months. Since I have been feeling well recently, I was expecting more of the same as previous check-ups. “You’re young”, “there’s still hope”, “be patient” – these are the common phrases I hear from my doctors when referring to my kidney failure, which is the primary issue I am dealing with at this point. (My Lupus symptoms are controlled by medicines and don’t cause any pain or need for concern at this point.)
So I went in with high hopes, not at all expecting the news he had to deliver. I’ve been told from the beginning that it might take 3-6 months for my kidneys to recover, and I don’t think I ever considered the option that they might, in fact, not recover at all. When I left the hospital at the end of January, my creatinine count was around 5 (should be less than 1 and started at over 11). Since March, it has fluctuated back and forth between 2.8 and 4.1, but most recently was 3.4. In addition, I had another more extensive test that showed I currently only have 17% kidney function. Based on these tests and the amount of time it’s been without significant improvement, I am now considered to have chronic kidney failure; it is no longer acute.
I haven’t given a health update recently, but since I frequently get asked the question “how are you feeling” in person, some of you may be wondering the same from back in the States. You are probably one of two types of people. The first is the type that wants to hear a simple “good” or “not so great” and not much more than that. The second is the type that wants to hear all the medical details and ramblings of my mind. If you are the first type, the answer for now is “good”. If you are the second type, read on…
Most days I feel great, and I haven’t had any major issues since leaving the hospital the second time. I’m still trying to figure out my spastic blood pressure, which seems to enjoy the depths and heights of blood pressure potential. I have had my appetite back and am really enjoying that. Who knew – life is not nearly as fun without the enjoyment of food. (My mother-in-law aided in this arena by making a variety of amazing dishes while she was here!) My only other medical issue at the moment is anemia, which is really not that big of a deal – it just makes me a little more tired than normal. So I am back to taking shots, which my sweet friend Jessie (who was a nurse in the States before moving to Nicaragua to become a missionary) so kindly administers to me. I can’t find the courage to give myself a shot, and apparently Chase can’t either, so we are both thankful for Jessie! I have blood tests and a doctor’s appointment again in 2 weeks (this will be my longest stretch – 3 weeks total – of not having to go to the hospital since January!) Last time I thought I would have a 2 month break between appointments, but ended up in the hospital the next week, so I’m hoping for a successful (healthy) time away this time!
I’ve been out of the hospital (the second visit) for two weeks now. Since I was not there for as long as the first time nor was I as sick as the first time, I bounced back much quicker than before. Nonetheless, I have still been tired and weak, but gaining new strength each day.
I finished 3 different antibiotics at home, and the infections seem to be gone for the time being. I am, however, anemic again, which causes me to be more tired than normal. Also, my blood pressure has been on the fritz—high then low seemingly without reason. But besides these two things, I have been feeling well and am thankful to be past the worst of hospital stay #2 and all that was associated with it (but thinking about the ice bath still makes me shiver!). I am currently not taking CellCept, my immunosuppressant to treat Lupus, since it is what allowed the infections to take over in the first place. However, there aren’t really any other good options, as far as Lupus medications go, for me to take, so the plan is for me to go back on CellCept in about a week. And then we just hope (and pray!) that the bone marrow/white blood cell/infection issue does not take place again!
Currently, Chase’s parents are in town and all the Nicaragua Russells have been enjoying their company. Certainly Beckett and Hatley have loved having Granddad and Lolli here, and we have all been benefitting greatly from Orell’s cooking! We went to the beach on Tuesday, but mostly have just been relaxing, playing games, and eating delicious food! Since it is Semana Santa (Holy Week), we all have off work, and the break has definitely been a welcome one.
Almost 4 years ago, Chase gave me something that I have treasured every day since. It is the most expensive thing he ever bought me and the thing that he had to work the hardest for to buy. I have worn it everyday of our marriage (I don’t even take it off in the shower), and I love to watch it sparkle in a room full of bright lights. In case you didn’t figure it out, I’m referring to my wedding ring (and engagement ring, as they are soldered together).
When I was in the hospital, I had super swollen fingers, so we decided to take the ring off and Chase took it home for safe keeping. A few weeks after I got out of the hospital the first time, I asked for it back, and Chase had to confess that he had lost it. Although I was really sad, I could tell he felt absolutely terrible, so I just forgave him. And I prayed that somehow, someway my ring would turn up. His theory was that Paul’s (who lets us use his washer & dryer) washer ate it. After taking it apart a few weeks later, however, no ring was to be found. Sad, sad day.
Well, if you haven’t heard yet, I am back in the hospital, although this time Lord willing, it shouldn’t be for as long. Chase sent an e-mail out to everyone on our newsletter list with a few more details and if you didn’t receive that or would like to, let us know.
Otherwise, I just wanted to give you a brief update of the last couple days here. I checked my temperature right before coming to the hospital and it was at 104. Yikes. We check in around 9PM Wednesday night and at about 2 that morning I was woken up to a torture session ice-water-bath-in-bed. Chase had done that the night before for my 105 fever, but since there was husband sweetness involved, he did things like put on soft music, NOT turn the AC on max, and NOT break open half-tied ice water-balloon gloves in my armpit (Although my whole body and bed was soaking wet at that point anyways, so I guess it didn’t really matter). My thoughts during this process varied between “I’m gonna die, this is worst thing ever, I’m pretty sure they are freezing me to my death” and “This too shall pass.” And it did. The passing, not the death.
Two months ago today, I was released from the hospital. I’m feeling humbled, as God has continued to heal me and lead me on the path of renewal and restoration. More blood tests and another doctor’s visit yesterday brought, for the most part, more good news and continued improvement, despite my Chick-fil-A confession (Oh, and did I forget to mention the Wendy’s fries I had at the airport on our layover in Houston?)
My creatinine count is down to 2.8 from the previous 3.5, and almost all of my other tests have continued to improve and/or are back to the normal range of what they should be. Almost everything Dr. Aragón had to say ended with an exclamation point, and he couldn’t stop smiling after looking at my test results. He was so pleased that he doesn’t need to see me again for 2 months! (I won’t miss the needles, cost, or drive out there, but I do kind of enjoy seeing him each week!)
We are back home in Nicaragua after our quick trip to the States. The week was filled with moments of uncontrollable laughter, refreshing times of welcome rest, and best of all, wonderful conversations. The kind of conversations that go deep to the heart of the issue, ones that challenge and encourage and inspire, and also ones that don’t just include “catching up”, but rather the deepening of friendship. We are blessed to have friends and family to share this life with despite the miles between us. This trip to the States was our favorite so far, and we are grateful that God answered our prayers - for all the details to fall into place and for my health, energy and strength despite the change of pace.
I’ve always found them to be so. And this morning, I thought I’d share with you a few of the reasons why:
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.
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”
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):
- 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!
Russell Brothers Take Chili Cup
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.
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.
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!
Well, thanks for praying. Not only did Dicegsa have the medication, it was a little cheaper than the hospital pharmacy and they had plenty of it. I think I have enough for 6 weeks! God is so good and faithful – sometimes I worry like the Israelites even though He always provided manna for them! He has constantly shown Himself as Provider to me. When will I learn?
And what made today even better? I went out in public for the first time since, well, arriving back in Nicaragua on January 4th (besides doctors visits and the hospital stay of course). I woke up at 2:30 am, wide awake, got out of bed around 3:30, and developed this wonderful plan. It took some convincing on Chase’s part, and he made me call the doctor to get permission (I’m supposed to be mostly house bound for recovery for about a month). Dr. Aragón was with a patient, but picked up his phone to make sure I was okay. I assured him that yes, my blood pressure is fine…it’s just that I would like to go to the mall. Just for an hour. I promise I’ll wear a mask? Please??? Yes! He said yes! I put on real clothes. This is a big deal. (Since I’m at home all day, I usually just wear pajama pants.) They even still fit…sort of. And I put on make up. This was a big day.
(Okay, so I actually just asked to go to the store, and we were gone for a little over two hours, but I did wear the mask!)
So I sat in the car while Chase and my mom went and got my medicine, and then they ordered Subway sandwiches, which we all ate in the car (I don’t have to wear a mask in the car and I can avoid the germs by going in less places). And then we went to the mall. Why? I wanted curtain rods. I bought curtains for our new place in the States but hadn’t been able to hang them due to a lack of something to hold them up. So I masked it up, people stared (thankfully, no one pointed or laughed), and we headed to “Mundo Electronico”. Yes, that means electronic world. What do they sell? Well, dishes, toys, purses, basketballs, and curtain rods, among other things. They do have a few electronics there, but we find it funny that the majority of their products have no electronic components to them whatsoever. I digress. So I walked around the store with my hands in my pockets, touching nothing, so as not to attract potential infectious attackers found on products that who knows how many dirty hands have touched. Mom played the role of my hands for me – I would ask her to pull something out so I could see it better, or have her carry around the product once we decided. It was certainly an unusual way to shop, especially with the mask and all, but it was great to be out of the house for a short time. To not feel like a “sick” person for a few hours.
My mom leaves tomorrow, and I am sad to see her go. While she was here, she cooked, she cleaned, she organized, she swept, she mopped, she filled up my water bottles, she washed the dishes, and the laundry, she scrubbed, she gave me shots, brought me medicine, and so much more. But mostly she loved. And she cared for me. And I am thankful for her. I will miss her, but also, I am ready to learn the new normal. The new life the Lord has laid out for me. I’m curious to see what it will look like.
I’m trying to convince Chase to let me go to the One by One staff meeting tomorrow, but he’s not budging…hmmm…I need a very large bag of gardettos to try to bribe him…
Each day, I’m feeling a little better. Last night I slept for over 9 hours! And I only woke up twice to go to the bathroom (a nice break from the normal 4 or 5 times). I’m not feeling as nauseous and each day, I have a little more energy. My blood pressure has been normal, so much so that I was able to cut back on one of the medicines from 2 a day to 1 a day. The cankles are even starting to subside a bit. Unfortunately, my cheeks continue to inflate themselves. I keep telling myself “It’s only 6 months”. And then at my last doctor’s appointment, he said “Maybe a year”. Darn it steroids, I want my old cheeks back!
I have a new prayer request today. One of the medicines I am on (the immunosuppressant) is called CellCept and it is next to impossible to find in Nicaragua apparently. I take 8 of these a day, so I need a lot! (That’s 248 pills a month!) Chase has been to pharmacies all over town looking for it, and it is almost nowhere to be found. He went to the hospital pharmacy and they had enough for today, but tomorrow morning, I’m in trouble. We have one hope – a distributor called Dicegsa, but they aren’t open on Sundays. So will you pray that tomorrow Dicegsa will pull through for us? I’m trying not to stress, which is one of the triggers that can activate and cause lupus to flare up, but it’s difficult when I don’t have enough medicine that I need for 7am the next morning!
(Oh, the nachos Friday night? Amazing. It was good to be re-acquainted with cheese.)
Lupus is kind of like those bricks to me. I don’t really like it, to be totally honest. But, despite that, when I look beyond all that is happening, I can see God at work, and He is doing great things! So I want to use this blog post to brag on Him for a minute.
- Many people do not get the symptoms of Lupus all at once, which generally can lead to a years long search for a diagnosis. My body went a little crazy all at the same time, which enabled my doctors to figure out within a couple of days what was wrong with me.
- Also, I didn’t have to search out for the right doctors – the Lord just brought them to me. And they turned out to be excellent doctors who would sit and talk with me for hours and answer every question I had.
- My husband has been an invaluable support for me. Before I got stuck in the hospital, he would give me back massages every time I asked, take me to doctors appointments, take care of the house, do not only his job but my job at work, grocery shop – pretty much everything. He would get me Sprite after I threw up, and the poor guy had to watch and hear it happening pretty frequently. I didn’t sleep much, so neither did he.While I was in the hospital, he would drive an hour every day to come see me. He loves and serves me unconditionally. God has blessed me with an incredible husband and I cannot imagine going through this without him.
- In case you don’t know this about me, my main love language is physical touch. God gave me a doctor who was always patting me on the back, rubbing the back of my head, giving me hugs, etc. I didn’t just feel well cared for physically, I felt loved.
- My mom was able to take 2 weeks off work to come down and help take care of me while I was in the hospital, and she has been unbelievably helpful at home as well. My house has seen remarkable improvements since we got home. And I’ve mostly been propping my cankles up on the couch.
- Though this all happened while I am away and in a foreign country – I have family here that has been a great support for me, including Chase’s brother David and his wife Kristina, and Chase’s sister Joanna (who lives with us). And I got my first niece during this whole mess!
- Also, He has shown me that he does answer prayer. Did you pray for my nightmares to go away 3 nights ago? Because they did. Did you pray for the insomnia problem I had 2 nights ago? Because I slept for almost 8 hours (waking up several times, but always able to go back to sleep) last night. Little things, but real things that shout that “God is good and faithful to hear our prayers!” Thank you for standing with me and petitioning the Father on my behalf.
- The Lord has been teaching me many things. That I’m selfish. That I’m not as good at communication as I thought I was. That I believe too easily. But also that He loves me and has not forgotten me. That He refreshes my soul and leads me beside still waters. That He is my peace, my hope in the midst of the storm. My cup overflows.
Well, that is just a few of the ways God has been at work. Praise Him with me? And those bricks? They’re nothing compared to the surpassing worth of knowing Christ Jesus my Lord!
I slept last night from 10:30 until about 1:30 – nightmare free! But then the insomnia kicked in and I couldn’t go back to sleep. I laid there for an hour, then decided to get up (I read it can help if you get up, do something until you are sleepy, then try to go back to bed.) Well, I spent some time praying, reading, sending some e-mails. Never got tired – I was wide awake. Around 5:00am, I decided to try to sleep again, but nothing. I laid there for another hour or so until I just couldn’t stand it anymore. I was starving at that point anyway. I haven’t really felt tired all day, but I did take a nap for a couple of hours this afternoon. It’s quite the predicament that lupus can be activated by lack of sleep, but the medicines I’m on to treat the lupus cause insomnia.
And the other predicament that I’m having is that I’m supposed to be walking to regain strength, but anytime I’m on my feet, my legs, knees, ankles and feet swell up like balloons. So I need to spend most of the day with my feet propped up to avoid my skin drying out/cracking from the water buildup. I did start a diuretic today, but I haven’t seen much difference yet. So these two things are a bit frustrating, but again, nothing compared to what I had/was feeling before I went to the hospital. Just challenges to work though, I guess.
Kristina, Linda, Beckett and Hatley came over today and I had a great time holding Hatley and playing with Beckett. Tonight we are going to go to Dave & Kristina’s for Russell Nachos – my one red meat experience for the week – and I’ve been avoiding dairy all day so I could enjoy the delicious cheese. Have you had Russell Nachos? They’re pretty amazing. You should be jealous.
Today was testing day. My creatinine level went up a little bit again – from 5.3 to 5.7, but again my doctor was not too discouraged by this. Last night, I had some pretty terrible nightmares, so Dr. Aragón changed around a few of the times for some of the medicines, in hopes of no nightmares/insomnia. My blood pressure is low enough that he lowered one of the medicines for that from 2 a day to 1 a day. And he said I could add a little more sodium back in, but I still need to be very limited. Thank you for praying for my stomach – I kept everything down today! Hoping for the same again tomorrow!
My mom has been extremely helpful – cleaning, getting me food, doing dishes, organizing, doing our laundry, etc. I’m not strong enough to do a lot of those things yet, so I’m really thankful she is here to help me out!
I’ve been feeling very discouraged, and several people have suggested that we might be under a spiritual attack. I’m not really sure what to think, but I would appreciate prayer in this arena, as well.
“My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken.” –Psalm 62: 1-2
Although it is SO great to be home, today was hard. Simple things like walking up the stairs take all of my energy. I couldn’t keep my lunch down, which brought back terrible memories and fears of the 10 or so days in a row I spent not keeping anything down before going to the hospital. Also, I had just taken a bunch of pills, including the steroids, which probably hadn’t gone through my system yet. Not sure what to do about that.
I go in tomorrow morning for another creatinine test, and then tomorrow afternoon for a doctor’s appointment. Pray that my creatinine level drops, instead of staying the same or increasing. Pray also for diligence for me as I am learning a new diet, taking pills all throughout the day, and keeping track of liquid input/output, blood pressure, and pulse regularly. I am also extremely weak, so pray that I can regain strength and muscle in my legs without overdoing it. And pray for my stomach – that it would behave itself and keep food down like any good stomach should. We were blessed this evening with a delicious dinner made by our friends, the Normans, and…so far, so good.
Oh, and it’s so great having my husband back. I missed him like crazy. I’m pretty sure I got the best one out there.
Well, it’s so close I can taste it…and it almost got taken away! My creatinine levels actually went up a little bit today from 5 to 5.3, and the doctors sort of wanted me to stay another day, but I think they knew I’d be crushed. So I get to go home, but now I will be my own nurse – I have to rest, rest, rest, measure my blood pressure twice a day, keep track of how much I’m drinking vs. peeing, drink at least 4 liters a day, give myself a shot every couple days, and take about 22 pills a day. I also need to walk a lot (I’m not supposed to do aerobics yet though), stay out of the sun, completely change my diet (dairy no more than once a day, red meat no more than once a week, no shrimp, and as little salt as possible). And I’ll be wearing a mask at all times in public. (Promise you won’t laugh when you see me!)
I woke up at 4:30 this morning and after the dreaded needle to the arm, I started thinking about being able to walk over to David and Kristina’s (my brother-in-law and sister-in-law, who live in the same apartment complex as us), and love on my nephew Beckett, and my now 6-day old niece, Hatley. Of course, I started crying as I remembered how I had forced myself, despite incredible arthritic pain in my feet and legs, to walk over there because I was lonely and missed them all so much. It doesn’t seem real that I am going to be walking over there today, relatively pain-free, although a little wobbly to be sure. The tears? I’m not blaming the steroids this time. It. was. pure. joy.
So taking 22 pills a day doesn’t come without a price. The side effects I’ve been having so far are sleeplessness, tingly/numb legs, swollen legs/ankles, pressure/light pain in my head and of course, I’m getting fat. But, on the plus side, the hair on my legs seems to have stopped growing, or at least slowed down exponentially. However, I would take all of these over what I had before. There are 11 main symptoms used to signify lupus, and to be diagnosed, you have to have more than 4 of them at the same time. I had at least 7, including malar rash (butterfly rash over cheeks and nose), discoid rash on my entire body, mouth and nose ulcers, nose bleeds, arthritis, pleuritis (inflammation of the pleural lining around the lungs), renal failure, and anemia. I didn’t, however, have any seizures, which I’m thankful for, but I probably wasn’t too far from it. I should get the results at the end of the week for the Antinuclear antibody (ANA) test that was sent to Costa Rica to test for lupus. I’ve heard that it can be negative, though, even if someone does in fact have lupus. My doctor said that he doesn’t care if it does come back negative; he has no doubt that I have lupus. And honestly, if I don’t, nothing makes sense anymore.
One thing I’ve realized about myself over the years, and more so while I’ve been in the hospital is that I tend to accept things easily. Sometimes too easily. I’m a little like Nathaniel in John 1. He asked Jesus “How do you know me?” and Jesus said “Before Philip called you, when you were under the fig tree, I saw you.” Nathanael, with his child-like faith, confesses “Rabbi, you are the Son of God! You are the ‘King of Israel’!” Jesus responded by saying “Because I said to you ‘I saw you under the fig tree,’ do you believe? You will see greater things than these. Truly, truly, I say to you, you will see heaven opened, and the angels of God ascending and descending on the Son of Man.” Jesus calls me His. I believe Him. I don’t have to ask a lot of questions. This was actually beneficial when it came to the lupus diagnosis – I was never in denial; I just accepted it. I do, however, think that it will be different now. I have a lot of questions and things I need to sort out with the Lord. Truths and promises that I used to believe so easily are going to take a lot more faith. But I trust that I will see greater things. That the Lord will reveal Himself to me in ways He might not have in a lupus-free life. And I will be depending on Him in ways I never needed to before. I know that you all have been praying for me more than I could ever deserve and I have been so humbled by the supportive community that you all have been for me. But I’d like to ask you to pray for one more thing: my heart. As I wrestle with the Lord over the coming weeks, months, and years, I will continue to need your love, support and prayer. Thank you for your faithfulness to me.
Oh, on a lighter note, I finally got to watch Price is Right today. It was just as great as I remember it as a little girl. Although, I did kind of miss Bob Barker. (I’m a nerd, I admit it.) Well, the wheelchair is here to whisk me away to FREEDOM! And… here come the tears… (it’s the joy again, not the steroids!)
I was a little disappointed today to hear that my creatinine level did not change since Saturday – it is still at a 5, but my doctors had warned me this could happen and they don’t seem too discouraged by it. They are actually encouraged that it is hasn’t gone back up, that it is maintaining, and that I haven’t gotten any infections or had any major setbacks. AND they are still thinking about letting me go home tomorrow anyway. My kidneys are still failing, but they said it could take 3 months to get back to normal and (thankfully), they aren’t going to keep me hospitalized that long. I’ll just have to come back frequently for blood tests, check-ups, sonograms, etc.
In my first blog, I mentioned that the first time I went to the doctor (January 6th), I took a test called the C Reactive Protein test. Normal people have between a 0-5 level, but mine was 246. Scary. Dr. Porras thought I had a serious bacterial infection, but it turns out it was just a sign of major inflammation in my body. Anyway, when I went back to see him on the 13th, after taking an antibiotic, it was down to 100 (still high, but better), but I was in such miserable shape that Dr. Porras admitted me (thinking I had Rocky Mountain Spotted Fever at the time). Anyway, they tested my C Reactive Protein again today and it’s down to a 7 – almost normal!
One of the fun and challenging parts about this whole experience is that it is all taking place in Spanish. My medical Spanish has definitely improved, and I think the Lord has enabled me to understand more than I naturally would be able to – I understand almost everything the doctors say to me! But miscommunication is still inevitable. For example, I knew that I had swelling in my kidneys and lungs, but apparently my liver was swollen as well and I was completely missing that word every time they said it. In case you ever need to know, the Spanish word for liver is “hígado”.
Also, several days ago, a man came in and put a little blue triangle sticker on my hospital bracelet. I was a little confused, but he explained that they were starting a new system with codes and red would mean “this patient could fall easily”, yellow would mean “special diet” and blue would mean “patient has psychotic problems”. I was shocked and asked him why they thought I mental problems! He laughed and explained that it was a new system that they just wanted to try out, and I guess since they knew I would be here forever and a day, they’d test it out on me. They want to make sure the sticker stays on through showers and things. I was relieved that they don’t actually think I’m crazy. And the sticker has stayed on my bracelet nicely.
Pray for freedom tomorrow! Is it weird that I’m excited to do things like wash dishes, go to the store, and use the restroom without having someone measure how much I went? I might kind of miss pancakes in bed every morning though…
No creatinine updates today – the doctors wanted to rest on the blood tests today, and even though I’m super curious what it is, it was nice to sleep in until the nurse woke me up at 6am to weigh me/do my blood pressure/give me a calcium pill. I certainly didn’t miss the 4 or 5am sleep interrupting bright light, needle prick I’ve become accustomed to every morning.
I did have to throw away my flowers today. Kristina had brought me some pretty yellow daisies a day or so after my life became about tubes, needles, annoying beeping machines, and pills, and Karl Most, from ICF (our English speaking church here) brought some beautiful gerber daisies on behalf of the church (along with some homemade banana bread that served as my mom’s breakfast all week!). Since it’s day 10, they were dying anyway, but apparently the spores in the flowers can cause infection, so the doctors ordered them to the trash. They told me a story about a patient on an immunosuppressant who was toting a bunch of flowers in his air conditioned car to his brothers funeral. Apparently, the spores got in his lungs and caused a really bad infection that he had for months. My heart rate has been high today, which I learned is the first sign of a possible infection, so they got pretty worried about that. The nurse just took my blood pressure and heartbeat again and both were normal, so pray that it turns out to be nothing after all!
Today was a fun day – mom, Paul and Chase came up and we played Settlers again, and this time I was a little less loopy. 
As far as freedom, I don’t think I’ll taste it until Tuesday. I’ll have another blood test in the morning (pray for close to a 3!) and Dr. Granera said we’ll (hopefully) start making preparations for me to leave Tuesday, the 25th. Oh, I also abandoned the hospital robe today. It feels good to wear a t-shirt. And some of my best friends Sami and Becca sent (through Kristina’s mom, Linda) a sweet card (I cried, of course) and some fun new pajama pants, which I promptly put on. I’ve been super encouraged by the notes, facebook messages, e-mails, blog comments, blog shout outs and phone calls. I would never expect such an outpouring of love from so many of you, and I’m simply amazed by how huge the body of Christ really is. So again, thank you. Thank you for being Jesus to me in the time in my life where I need and want Him the most.
The medication and treatment continue to work at bringing down my creatinine levels – today they are down to 5.0 from 5.5 yesterday. The doctors are very encouraged by how I’m responding and with the combination of the 3 different blood pressure medications, that is staying down as well. I’m still praying for patience, as a 3 still seems forever away. I have to accept the things I cannot change though, right? I’m hoping I’ll get to go home Monday, but we’ll see! Some great news is that today was the first day I didn’t have to get the thrombosis prevention shot in the belly, which is currently a shade of red/pink/purple that I didn’t know skin could be.
Chase stayed Thursday night and Friday afternoon, we decided to watch a movie. He picked My Sister’s Keeper, which I’d seen before, but I tend to have a bad memory when it comes to remembering movies, so I had completely forgotten that so much of the movie had to do with kidney failure! I’ve been working on trying not to cry so much, but that was next to impossible watching that movie. It’s funny – I was never much of a crier before. Chase said he has seen me cry maybe 3 or 4 times in our marriage…until the Lupus. I was talking with Paul on the phone the other day about how I hate how much I cry, and then I started crying! Poor Paul! What’s wrong with me? I blame the steroids.
I started researching a little bit last night about what life with Lupus will be like, and it made it sound like I’ll be tired, weak, have headaches, achy joints, etc, and I started to get nervous. I asked my doctors if that was how it was going to be and they said that since I will be on the immunosuppressant for 2-3 years, the lupus will be in an inactive state, so I should be able to live pretty similarly to before. Plus a weird mask much of the time. I’ve been really disappointed all week because at first, they told me I wouldn’t be able to be around kids at all (which is the whole reason I’m in Nicaragua!), but I asked again today, and Dr. Aragón said that I could still go to the services as long as I had a mask on. I was so happy I cried. (big surprise, right?)
One fun thing about my mom being here is that she got to go to the kids and youth services with Chase today. When she came in October, the kids service had been cancelled that week, so she only got to see the youth service. She brought her camera, and Chase warned her that if she took a picture of one kid, she’d be taking pictures of all of them. She took so many her camera battery died.
I’m a little nervous because life with no immune system changes so much. I never used to be an extremely clean person, as far as germs and things go. Now I need to wipe down grocery cart handles and treadmills (confession: I have never wiped off a treadmill, but I just don’t sweat that much!). I’ll need to keep wipes and hand sanitizer in my purse and make sure people aren’t sick if they come in my house or if I am going to go to theirs. My life will be need to be so much more cautious. But I guess it’s better than having my own immune system attacking me all the time! I used to be the girl who never went to the doctor, and now, as my doctors told me today, I’m stuck with them for life (or as long as we’re here anyway). But I told them I’m fine with that, because I happen to like my doctors a lot.
In other news, they took me off the saline solution yesterday, and today they took out the i.v. entirely! They’ll be continuing the rest of my care and treatment through pills (and a lot of them!) They have me on 3 medications to lower the blood pressure, which seems to finally be working as of this morning, so I no longer have to have the armband or toe-pincher on! Freedom! And it’s nice! I also have the freedom to drink as much as I would like now, instead of the strict 2000 ml restriction I have had.
So here I am in room #313, trying to wait patiently for my kidneys to get with the program so I can walk myself out of here and into whatever this new life will look like. This new definition of abundant life, as a close friend of mine put it. I have no idea what lies ahead, but I’m thankful for a God who does know. And for the community He has given me, the body of Christ, to walk it with me. Thank you for reading, for praying, and for your words of encouragement. I am grateful.
The good news is that my creatinine levels continue to go down – today they are down to 6.2 from 7.2 yesterday. The bad news is that my doctor came in, pinched my cheeks, called me “gordita”, and then said “don’t worry, you’ll only be fat for 6 months.” (Ah, Nicaraguan culture.)
I did, however, get to go down the hall and meet my new niece, Hatley Michelle Russell, who was born last night! I even got to hold her, though the doctor said I had to wear a mask (which wasn’t comfortable at all – I apologize to everyone who has had to wear one to visit me!). Hatley is absolutely beautiful and I love her so much already! I didn’t want to leave, so my nurses had to come and get me to bring me back for blood pressure testing, more pills, etc.
Chase is coming to stay with me tonight and it makes me want to cry just thinking about it! I haven’t seen him much the last few days and I really miss him! Tonight will be the closest thing to date night we’ve had in…I can’t remember how long.
As far as how I’m feeling physically, I’m actually doing well. I asked my doctor some questions about my body today and he said “You don’t worry about your body, that’s my job right now, I’ve got it all under control, you just need to be calm.” I’m not really in any pain, I just shake all the time from all the meds. It’s weird how I can feel so normal, and yet so many terrible things are going on inside my body. Mainly, I just miss normal life. I miss the kids at Niños de Vida. I miss my house. I miss my bed. My friends. My life. Can’t wait to get home. Hopefully only 5 more days here? Seems like forever away…
Me with my husband and mom in all my hospital gown glory!
So what if I’m a tourist in the hospital?! I wanted to show you a picture of my 3 doctors who are taking such great care of me! From the left is Dr. Aragón, the second doctor to come on board; middle is Dr. Granera, the kidney specialist new on the team; on the right is Dr. Porras, the original doctor I started seeing. It was fun for them to all come at the same time this morning. Normally, they come in one at a time to visit, check me out, etc. Yesterday when they came in, even bearing good news, they weren’t happy, but today, they were much more pleased. My creatinine levels went down from 10.4 to 9.3, so prayer and the steroids are a great team together! Putting off dialysis for another day (praise the Lord!)
If you’re wondering about the masks, those are new Dr.’s orders as of yesterday. Apparently, since my immune system has been so rebellious these days, they are giving me an immunosuppressant to give it a rest, while medicine, vitamins, etc. can help get me healthy again. SO all my visitors have to wear them so I don’t get their germs! Don’t let this keep you from visiting if you are considering coming by! I love having visitors! Yesterday, Lori and Carey, 2 dear friends from my Bible Study snuck me in some Quizno’s, which was a welcome break from hospital food! It came at the perfect time – just before the diet crackdown. I’m now on a no-sodium-no-potassium-no-red-meat diet. Some of the things I’ve been eating the past few days that I can’t now? Cantaloupe, watermelon, bananas, maduros, cheese, beans, and my favorite, french fries. Thanks ladies for giving me a quick last fix before the whip came down.
Paul, our friend from Dallas who lives in Nicaragua and works with One by One now, has come to visit a few times as well. He came Friday night along with David (brother-in-law), Joanna (sister-in-law), and Chase, and we acted a bit like fools. We took the shelf out of the bathroom, made a make-shift board game table out of that and my nightstand and played Settlers of Catan with the Cities & Knights expansion. That was the day after I got here, and I was still a little loopy, so I kept forgetting in the middle of my turn that it was my turn. Oops! I asked my nurses later if anyone ever plays board games in their room and they said it’s rare, but sometimes. I ask if it was all white people who play, and of course, yes it is. We’re nerds. It’s okay. We’ll own it. It was the first time I’ve gotten to just have fun and forget about being sick since coming back to Nicaragua, and that was just a welcome feeling. Thanks David for bringing the fun and games!
Lastly, our friends Jessie & Timothy Crabtree came to visit last night. We had a great time catching up with them since they’ve been in the States the last 3 months! We’ve missed them a lot and are glad they’re back! Other visitors that made it in before the mask rule were Kristina (Sister-in-law), Ann Sharp (friend from our English church here, ICF), then Kristina with Beckett (my 20 month old nephew), who did quite well and liked to come point at my IV and say ow-oh, which is his word for a boo-boo or owie, as other kids may say. He sat up in bed with me for awhile, probably because I let him play with my cell phone and ipod. AND he’s learning my name, which sounds kind of like Ju-dah. Works for me, though – better than being called Chase, which is what I’ve been up until this point! So, there’s a little more social update for you. Sorry there’s no pics of me yet. I looked terrible until last night, so I plan to take a picture of my mom and I today (she arrived last night!) and maybe I’ll even post it on here later today. Thanks for reading the blog! And thanks for praying! Continue to ask the Lord to heal my kidneys completely, and pray that my blood pressure would go back down and my lungs would continue to go back to normal as well. I cannot thank you enough for your prayers, your notes, your e-mails, your comments. They mean the world to me! Love you all!
