Tuesday, August 26, 2008
Mrs. R. gave all the kids nick names and I used those on each page. Brinn's is Marty Binn, Marty has something to do with all the different names of Root Beer, Brinn loves Root Beer, and Binn, because when Brinn writes to fast she often forgets the R in her name.
I love this picture of her, just shows her sweet funny personality. Oh and the monkey well that's Millie, Brinn has a collection of monkeys this one has a blue brother name Maxie, and she got Millie on the day the picture was taken.
Monday, August 25, 2008
One of the things I have always struggled with, as I know every woman struggles with is my appearance. I lived so many years in the image of the world, and what we are told to is beautiful, and desirable that it's become second nature for me to look at myself in the mirror and pick out all of my flaws on a daily basis.Some days I'm better at this than others, but recently with the new level of medicines in my system that old habit is back in full force. The medicines I take have devastated my skin, on top of dealing with the usual aging skin struggles the extra steroid causes all other kinds of things, acne, puffiness, and my feet swelling. My other medicine has caused other skin issues as well and some days it just makes me so frustrated.
So I keep thinking about my previous post of Brinn becoming a Tween, and about the post I quoted from Lisa Whittle. What is my frustration with my appearance teaching Brinn. I know that because of some of my skin issues I stopped wearing shorts out of the house. I'm better now but earlier this spring I had a bad reaction to a topical cream treatment and Brinn overheard me telling Brett I don't want anyone to see my legs. The next couple of weeks toward the end of school Brinn (who lives in shorts) suddenly stopped wearing shorts. I finally sat down with her and asked her why, she said Mommy I don't want people to see my legs. It broke my heart, it was my direct words coming back to me. I asked her if she'd heard me say that she nodded yes, and so I showed her my rash and explained to her that she was beautiful the way God had built her. I also told her I would wear shorts on the weekend out of the house too. What a lesson.
Brinn watches me I'm her first role model, if I want her to look within herself to find her beauty, I have to model that for her. Something that God has been trying to teach me for years. I can't depend on my outer beauty to take me far, it'll only bring shallow fulfilment. I must learn to love the person that God loves. See the beauty he created in me, the deeper more meaningful part of me.
In 2000 I went to a Women's Retreat with my sister a still baby believer barley over a year old in my faith, God had brought me through a divorce and pregnancy, and was getting ready to send me out on my own. The woman who spoke was Debbie Alsdorf. She had spoke on many things but one of the things I remember was that she spoke on Psalm 139, and told us to put our baby picture in our Bible on that Psalm so we'd remember that it tells us in Psalm 139:13-16 "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of the came to be." I was not a random birth, a happy accident that occurred 9 years after my brother, but apart of God's plan and purpose.
So as I struggle once again with the new battles of medicine and the tole it takes on my body, I'm searching myself to learn to love the true me, the one that doesn't show in the mirror, the part of me that God sees and calls his beautiful child. I want so much for Brinn to see this part of herself before anything else she sees, and I believe and put my hope in the fact that I learn to see this part of me, she will watch and see even though mommy puts on skin creams and make up it's not those things that make me beautiful, it's my love of God and his light in me that makes me beautiful.
Saturday, August 23, 2008
This past Weds, I had opened my email and found the verse of the day from Air1 radio. It was Hosea 6:3 "Oh, that we might know the Lord! Let us press on to know him. He will respond to us as surely as the arrival of dawn or the coming of rains in early spring." This verse jumped out at me, I realized that in the midst of the last week, I've been on my pity potty feeling sorry for myself, and really scared. I read the verse over and over, and knew it was time to look towards God fully.
So that afternoon I get a call from my doc, I had emailed him and asked him about taking something to sleep, and that I was feeling very bloated and my feet were swollen. Doc called me that afternoon and said he wanted to see me Friday, and set up a CT scan of my abdomen. My feet have been so swollen that I can only wear flip flops, and since I just got the cutest Anne Klein shoes on sale at the outlet I was bummed that I couldn't wear them.
So Thursday morning, after Brett and Brinn went off to work, I sat down to read my bible, and I just started crying out to the Lord, I confessed all of my fears, frustrations, and then accepted God's will whatever it was. Then peace came into my heart again, I didn't know what His will was, but I knew that I could face more, my fear was leaving and being replaced by strength.
So yesterday I headed over to good old Kaiser SC, and was schedule to meet up with doc at noon, and have my ct scan at 1pm. Before that I had to go get my "smoothies" that you drink before your scans. Not to bad, I've endured worse.
Doc was taken back by my feet. I should have taken a picture really for the blog, they really did look funny. He said it was a combination of water retention, and fluid caused from the liver inflammation and the upped dose of prednisone. He said the ct scan would tell us if the fluid was building in my abdomen and he prescribed a diuretic.
So then we talked about the transplant scenario. And let me tell you Hosea 6:3 rang clear. To determine if you are referred out to UCSF to start you into the treatment center there and to be considered for a transplant listing they use a thing called a MELD Score. (Model for end stage Liver Disease) UCSF says in order to send a referral for transplant screening and monitoring your MELD Score should be 15. Doc and his other colleagues have done my meld scores to date and I came up at a 12. Thank you Jesus. This means at this time I won't be referred out. Doc still believes that it's inevitable that I will end up needing a transplant, but he's back on his old time frame of 12 to 15 years after my diagnosis. He said I could hang out at 12 for a while, and even people who are at 15 don't get transplants they just get monitored for the MELD score to go up. I left his office feeling so uplifted, and even my second "smoothie" tasted good.
Then it was off for my ct scan. They put in iodine through and iv tube, that was a weird sensation, it lights up your insides and they took my pictures. It made me tired, gave me a headache, and a bit of a stomach ache but I was better last night.
So I have another blood test next week, and if the numbers improve again like they did last time doc said they lowered my steroid a bit. Yeah cause this level is icky. He also reminded me that I have to stay laying low, and not to deny my body rest, and run myself tired. Which I have many loving friends and family members with Brett leading them all that are now keeping me in check. This means I need to stick to my work schedule, and not go over it. It means my quiet rest time is just that. It's not run around and do errands time. I have many people who have helped Brett and I arrange it so I can go in later to work, so that I can get enough rest to take me through the day.
So praise God. I'm giving him all the glory. This is a path that God has designed for me to walk, I don't always do it perfectly, but I know He doesn't expect me to. He also doesn't leave me to walk it alone. I have my Lord, my family, my friends, and now I've found a support group on Yahoo. Thank you for all the prayers, and support. Keep on praying for my illness to quiet down. I'll let you know next Friday how my blood tests come back.
Thursday, August 21, 2008
Monday, August 18, 2008
Brinn got to spend the day with her bff and so Brett and I took off and went for Breakfast after church. I was still feeling pretty good, and was hungry (yeah) so we went to Stacks in Menlo Park, I had yummy blueberry pancakes. Oh and found that pottery painting place so when I get more umf, I'm going to take Brinn and paint some pottery.
The best part was when Brett said he was enjoying having the regular me right now, and wanted to enjoy it. He said he misses having that on a regular basis, but he understands, it's weird being so disconnected some times. That's the best part you know about being married to your best friend, because they love you all the time. We didn't really do anything else just came home and spent time together, then I wore out and it was time for me to lay down and sleep for a couple hours. Brett worked on his testimony for the college group at church tomorrow night, he'll share about what God's done is his life.
When I woke up later didn't do much, but I am a HGTV fan, and I watched the Summer Star challenge. My favorite Design Star winner won yeah go David, I love his show Color Splash, I would love to have him do my living room.
Sunday, August 17, 2008
Let's see we watched the Brinn's friends C & G today while their parents actually got to go out and do fun adult stuff. Something they don't get to do enough. There great people, theirs is the house the kids love to play at, and they are always willing to have the kids there. We were going to take the to play mini golf, but G got a tummy ache and actually came home and fell asleep. So they watched Star Wars, and other movies.
Got to have a nice talk with my brother Gary, gave him all the gory details on the doctor call, and talked about a few other life stuff. I miss him, I don't get to see him very much, and I'm bad about talking on the phone.
Brett was a laundry machine today, I worry about him, me being sick throws him off. This last 9 months have been a lot about me being sick, but other than the trip to the hospital this is the worst the AIH has been. He didn't know me when I went through the worst part, so my weird sleep patterns, disconnected personallity, and strange eating habits are taking some adjustments. Today all I really wanted to eat for dinner was zuchini and fruit. Yes strange. Although I did want pancakes this morning which was really weird, because so did he. Hmm maybe it's like sympathy pain.
I wanted to go play with the pictures I took at my mom's 80th party, but I just couldn't get motivated. People say to me why don't you scrapbook, but I just feel so unfocused. I go in my beautiful scraproom and feel completely overwhelmed. So I basically did nothing, which people kept telling me I'm suppose to be doing. I'm not good at being home sick, infact I hate it, of course that's why I wear myself out, because I'd rather do something than melt into the couch. Oh except I did go and get my threading done on my eyebrows and face.
I'm looking forward to church tomorrow, there is something about singing worship with a room full of people that lifts me. Maybe because we are all there singing and loving God together, yet sometimes I feel just like I'm the only one there with God. I remember the first time I sang worship at Highway, it was like coming home. I had been church shopping after moving back to Sunnyvale, and I had just not found a place that I felt like home, until that day. That was a little more than 8 years ago. It's changed in many ways, but it's still has such a feel of comfort for me.
So I guess I better go lay down now and try and sleep. I have to get up at 7am. Thanks for letting me whine.
Thursday, August 14, 2008
When the diagnosis first came I was in what the call hepatic failure, a fancy term that meant my liver had stopped functioning, and I am blessed to be hear writing this today. This is a long story and one I'll share later, but needless to say God answered my prayer and allowed me to stay with my sweet then 18 month old little girl. At the time I was a single mommy and having her live with her bio father was something I couldn't see as a good option. My prayer to God then was take everything else, but let me stay with Brinn. He blessed me back in ways I never imagined.
So over the last seven and a half years, I have had my ups and downs with my illness. When my body goes through a AIH flair up, I get very fatigued and because of the medicines I take to keep my immune system suppressed I catch a lot of colds, along with other side effects the medicine causes. When I was first diagnosed Dr. F told my sister and I that we needed to talk about a transplant. Then as Doc said by some miracle I was able to avoid that procedure at the time.
The last couple of years especially this year has been tough on my system,a lot of colds and flu this past year, and a hospital visit for a blood transfusion due to a rupture in my throat. My liver tests haven't been the same since. I have a very aggressive case, and take a higher than average dose of a drug called Imuran and a smaller dose of Prednisone, I've never been off my meds the one time we lowered my current dosage I bumped higher than Doc was willing to risk in 2 week period, and went straight back to my normal dose.
I have had a blood test every month since January, and the numbers went up (bad) and then started back down (good), but this last month I knew something was off, so when I went in for my test the 31st of July, I expected a little bump. What I got was a jolt, the highest they've been in probably 6 years. I was shocked, and so was Doc. Why we don't know. I've been resting, not over doing it not getting sick. I mean going 1 month with out a cold this year was a record. So he bumped up one of my meds (predinsone) and I had another test yesterday.
Brett and I've been a bit freaked out this week, lots of prayers and trying to lean on the Lord for peace, knowing that this didn't catch God by surprise, but our human brain keeps wanting to know what's next.
I got my test back and my test results, are lower, and that's good, that means the medicine is reducing the inflammation. However Doc called me he only calls when he's got the this is not a routine just stay on the meds and test in a month kind of thing. Those he emails me.
It seems that after talking with his colleague that I need to start preparing for the idea of a liver transplant. See back in the beginning my liver rated on a scale from 1-4 for the need for transplant at a 3. Now they believe that the damage sustained at the time of the hepatic failure has been added to and that's why my liver is getting larger again. Which means it maybe that I'm come up on the time to be a transplant candidate.
We don't know of course, I have another blood test in 2 weeks, and then 2 more weeks. This could go on for another year, or more, they could decide to send me in a few weeks. That we didn't get a clear picture of.
It's been 7 years, and a lot has happened in that time. I met and married Brett, we went through some pretty rough stuff, when his need to go into drug recovery came out. (again another story) I've watch Brett grow from a man who had never opened a Bible to a man who is never without one, and constantly hungry to learn more of God's word. He adopted Brinn in April, and he is what I like to call an Ephesians 5 husband, he strives to love me and Brinn as God has called him to do.
God knows all things and he prepares the path before we ever walk it. He prepares it for us down to every detail. Seven years in the Bible means completion. Seven years ago if I had to face a transplant it would have been a much different story. My family was my stronghold during that time, they gave so much of themselves to me and Brinn to care for us. But I believe that God has prepared Brett to be the husband and the father he'll need to be should this transplant be the Lords will. God has surrounded us not only with my family, but Brett's, our church family who carried Brinn and I through prayerfully, lovingly, and financially, and now friends who have been there to help us in our time of need and offer Brinn a safe and fun place to be.
We would appreciate your prayers, pray for God's healing power, pray that we will be strengthened through the waiting and unknowing and rest in God's arm's. Pray for Brinn as we rearrange her routine, to help my body to recover from this episode, pray that she will see our faith in Jesus and that hers will grow. Pray for us to be content with God's will, and to be ready to do whatever his will and plan is. Check back here for more updates
Wednesday, August 13, 2008
12 I don’t mean to say that I have already achieved these things or that I have already reached perfection. But I press on to possess that perfection for which Christ Jesus first possessed me. 13 No, dear brothers and sisters, I have not achieved it,[a] but I focus on this one thing: Forgetting the past and looking forward to what lies ahead, 14 I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us.
This verse gives me so much hope, in knowing that I don't have to worry about all my past mistakes, or even the future ones that I no doubt will make. That I don't have to be perfect for God to love me, that perfection in my life on earth is not attainable. God loved me when I couldn't love myself, he took me into his arms when I was covered in the filth of Sin and washed me clean, and said I've got a better life for you if you are ready to give me your old one, I'll give you a new one. God is changing me and molding me into the person He has designed me. Some of that process is joyful, much of it is difficult, but always in the end of the trial or experience I have found joy and a deeper relationship with my Lord and Savior Jesus Christ.
Learning not to look back at your past and recall shame and pain is difficult for everyone. Sometimes I think I've gotten through something, I'm done with it, then I realize that I'm back in the thick of the memories of the pain. Or when people bring up your past mistakes, even if it's not meant to be hurtful, I have to remind myself that it's gone it's done, and God has wiped it away, and try not to push the rewind button and play the live in the past game. That's when it's time to recall what Paul says here. Time to give it back to God and look forward toward the life the Lord has for me.
May you look forward to the life the Lord has for you, and not back at the past mistakes made.