Monday and Tuesday Mrs. Kay took care of kiddos. They had a blast. The highlight was popcorn with some type of cinnamon. I called near the end of the day, but Van said that Kay kidnapped the children. Too good.
Van took off a few days and was domestic. Somehow he took three children to see a movie. Brave, brave man. They all really enjoyed it, and I think even sweet Avi made it through well.
Cade is in a happier place in life. God is good.
I've been navigating the big city and not getting lost (much). I don't really like to run errands, but seem to a lot "as long as I'm out". I've been trying to cook from scratch to avoid salt, and am finding that it takes some effort to think through flour, vanilla, etc. for the cupboard. Julie inspired me with Pioneer Woman (stinkin' hilarious), and I've made a couple of her recipes. The problem is, I don't know how to scale down to one person very well, so I end up eating whatever it is for several meals in a row! I've always liked leftovers--less effort, less dishes, yummy food. I miss HEB terribly. The stores here are overpriced and cramped. "Tom Thumb" is about right.
I'll leave in a couple of hours to go to Waco for the weekend. (I'm at the doc's.) I'm really looking forward to seeing everyone. We should have some nice time together, and I might even overlap with my parents on Monday. Bless 'em.
Friday, May 27, 2011
+56
Good: We've knocked out the skin problems. Steroids are being decreased. I feel pretty good, too, and am able to function like most.
Hard: We're working on other somewhat-anticipated complications, but it has been a part-time job for me. I'm in some type of office most weekdays for a chunk of the day, and I have work to do at the apartment with the IV that takes a couple of hours of focus, plus trips to pick up supplies. It has been much more slow-going than we anticipated. The steroids have taken a toll, so it will take awhile to get back to looking and feeling normal. I'm very glad to have a decrease.
All that said, we are making it, by the grace of God. He has provided a community, especially our folks who have held on to us through this. I am not puny or sad. In fact, I'm actually doing well with it all, just impatient. That is the latest health report. Funner stuff in the next post--it felt weird to put the two together because I feel like they are two different worlds.
Hard: We're working on other somewhat-anticipated complications, but it has been a part-time job for me. I'm in some type of office most weekdays for a chunk of the day, and I have work to do at the apartment with the IV that takes a couple of hours of focus, plus trips to pick up supplies. It has been much more slow-going than we anticipated. The steroids have taken a toll, so it will take awhile to get back to looking and feeling normal. I'm very glad to have a decrease.
All that said, we are making it, by the grace of God. He has provided a community, especially our folks who have held on to us through this. I am not puny or sad. In fact, I'm actually doing well with it all, just impatient. That is the latest health report. Funner stuff in the next post--it felt weird to put the two together because I feel like they are two different worlds.
Sunday, May 22, 2011
prayers for a little boy
Our sweet little Cade is going through a tough time. He has been such a trooper through all of this mess, but as of late, he is more anxious, argumentative and aggressive, most notably with us or his brother. We are praying peace over him, and that we will know how in the world to handle his little heart without him dominating our family life. Honestly, I'm out of daily practice communicating with little ones, so my verbiage is lacking, and I'm struggling with keeping up with him--he is very quick in his thinking and gets himself in trouble before I can help him get out of it. I'm trying to lean more on the Spirit to know how to get Cade through the last few days of school and through this transitional time with me being around more.
Be gone steriod beast!
Weekends in Waco are the best days ever, despite me having to heavily lean on the man-of-the-year to save me from my own children occasionally! We're doing our best to live it up. We had a great picnic at Lover's Leap and remembered that supervising adventurous six-year-olds and their tag-along brothers might be important. A fence, a boundary, a partition doesn't always translate to those who are learning boundaries. (Whew.) It was still very fun. Van and I went out on an honest-to-goodness date night and left the children and the tornado watch (thanks Aubrie!). We had some great pho soup, drove around pretty neighborhoods looking at houses and topped it off with a Whataburger milkshake WHILE communicating and laughing. Can't get much better than that!
Please continue to pray that my steroids will decrease this week, preferably beginning Monday. A carrot has been dangled in front of my nose for several weeks now, and I can smell it. I would really like to just grab it and gnaw on it and say, "Whatcha gonna do now? Huh, huh?", but I suppose sound caution should reign. It would really simplify life if this one drug could be out of the picture.
Please continue to pray that my steroids will decrease this week, preferably beginning Monday. A carrot has been dangled in front of my nose for several weeks now, and I can smell it. I would really like to just grab it and gnaw on it and say, "Whatcha gonna do now? Huh, huh?", but I suppose sound caution should reign. It would really simplify life if this one drug could be out of the picture.
Wednesday, May 18, 2011
Happy Tummy
Renee and I relaxed for the morning and do a little bit of every kind of nothing. That was awesome. I was able to play with the new sewing machine for the first time, and it runs so beautifully. In the afternoon, I expected to have a very short therapy, but the new photo therapy machine is broken, and my central line is consistently giving the nurses fits, so it took several hours again. The nurse today was wonderful and patient, and I appreciated her calm personality. I really hope I have her a lot. She was helpful.
The day ended with a lesson in how to broil a steak- yum! That girl can cook. It melted in the mouth. We then figured out how to caramelize the top of chocolate creme brulee using the broiler on a very modest apartment oven as well. We rock. It was awesome. To think that I used to be scared of a little broiler....
Skin issues are better, but will still be addressed at the doc's tomorrow. We'll see if I can get through the visit without a new medication. Sigh. Praying for LESS medication.
The day ended with a lesson in how to broil a steak- yum! That girl can cook. It melted in the mouth. We then figured out how to caramelize the top of chocolate creme brulee using the broiler on a very modest apartment oven as well. We rock. It was awesome. To think that I used to be scared of a little broiler....
Skin issues are better, but will still be addressed at the doc's tomorrow. We'll see if I can get through the visit without a new medication. Sigh. Praying for LESS medication.
Tuesday, May 17, 2011
Abasting and Aboundment--words I don't use often
This week in review with a re-arranged Philippians 4:
12 I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need.
Then later in the week:
6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
I’m praying to be here:
8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.
And somehow in the middle of things:
13 I can do all things through Christ who strengthens me.
I began the week with the photo treatment of my blood. This was a tougher process than I imagined because of the sheer length of the process and the intense involvement of the nurse, but I feel like now I am kind of in the groove and know how to prepare better to pass the time in more productive ways. Patient education is very important to the nursing staff, so I am told every few minutes (literally) where we are in the process. I would rather not be involved, actually. I would rather mend, read, or type without knowing what my white blood cells are doing. Disgusting. Ugh. This was a kick in the gut, and thankfully, my sweet friend Julie was here after the toughest times to distract me and kept me from completely losing it, knowing that there are many more of these days ahead. Such a sweet spirit.
[Today the treatment went a bit faster, and tomorrow, probably, I will be on a brand new machine that should cut down the time by several hours! This is very, very good news, and I calculated (I didn’t really do the math because I don’t like to, but I figure) that it would save literally days over time. Days!]
On Thursday, we left for Waco to see the family, and those were good times. I made all sorts of pledges to my children about ways we would spend time together. On Friday, we closed on the new property (yea!), and we were to spend Saturday morning there climbing trees (okay, probably not me—I don’t go above 2 feet), playing in the dirt and throwing rocks in the river-can it get any better? We then got several frantic phone calls from Dallas saying that I needed to return ASAP to begin an IV antiviral drug. YOU HAVE GOT TO BE KIDDING ME. It was all due to a misunderstanding in-between the office folk (oh, yeah, and because I need the drug to be healthy-still working on that perspective…). Van quickly checked out a new baby at the hospital and we picked up ice cream just so I could watch Zane eat it—that boy loves chocolate. Van and I were able to wait until Cade was out of school so that we could say goodbye to him, and we left my parents yet again with all three children, one wailing. We did have a few minutes for Van to swing by Taco Bell (never, ever...ever again) while I grabbed the fussiest little fur clearance vests from the outlet mall (matching!) for my nieces. That took the edge off for some stupid reason, and then my frustration was mostly at Taco Bell.
We arrived in Dallas. A courier from Walgreens arrived at the apartment with a giant box of medical supplies and the IV drug, and about 8:00pm, a home health nurse arrived. We endured a grueling process of paperwork and instructions about hand washing(!). I can out-handwash her any day. She was incredibly nice, but it was very humbling. I think the hard part was that she didn't know my history, my abilities, and was not familiar with my treatments or drugs--very, very few people are. Van was so patient, and we got through it. So now I have my very own personal IV pole that I will use for the next 2.5 weeks, and I get to do medical stuff which I just LOVE. Fun…..oh, where is that whatever is true, whatever is noble….
Saturday was actually quite enjoyable. Van and I went to the Dallas Farmers’ Market and bought beautiful produce from vendors. Little cucumbers, pineapple, red peppers…just gorgeous. I’ve been buying from Target, so it was divine. Van went into a neat little fly fishing store and bought a little 4 piece fly rod for backpacking that was made locally. It is so cute. I can’t tell you how excited that I am that it will fit in a suitcase on an airplane! Yee-haw! Van ate Julie’s enchiladas for breakfast, lunch and snacks with fresh avocado from the farmer’s market and was in heaven. He was an addict. Saturday was a good day.
Mom and Dad are amazing with the kids and are exploring every inch in Waco. Mom got very excited about the water spray parks, and when they took the kids to ride bikes on Saturday and saw that one was working, they let them get in with their clothes on. It made a big impression on Avi. “I got wet!!!!!” Good stuff. I bugged my parents to death about watching the shuttle launch with Zane and Avi. I was so excited. Zane’s only comment, “It fell apart.” Great. The kiddos are getting some really neat time with their grandparents. Oh, and they did get to go to the new property and hang out! I can’t thank God enough for the beautiful relationship that he has formed in my family. Very thankful. I loved growing up with my grandmother.
Zane and Avi told me about the hot air balloon that went over the house. Zane was impressed with the loud noise that it can make with the fire, and Avi said, “It was wight dere! It was wight dere! It was so pwetty!” Cade informed me that he, "ate cow... a brisket... It is called BBQ," for supper. Oh, and that he, "will be the caboose, not the line leader tomorrow." Very important job. I'm thankful for friends that shared photos and video from the Parent's Day Out program! An unexpected blessing for the day!
We’re attempting to make the shift towards more time with the kiddos on the weekend and more independence for me. This sounds crazy given that I’m booked with so many appointments during the week—especially after the developments of late, but with my energy, it makes sense to start a bigger transition. It just is time. Also, the new treatments seem to be the plan of action going into the summer, so we feel confident that I’m on the road to healing and that there shouldn’t be any more big surprises. It seems like we are less day-by-day and more able to plan for the somewhat-tough-but-oh-so-much-better couple of months ahead.
Tomorrow holds hanging out with Renee with an attempt at Martha Stewart's chocolate creme brulee, learning how to broil steak and sewing projects. We're being domestic. Hopefully a new-and-improved photo treatment machine will make its debut in the afternoon. Not too bad!
The ebb and flow of life really makes me think about where I put my trust. A new friend asked me what she can specifically pray for. Today, I think I would ask to be off of steroids quicker than projected. I'm blowing up like a Willy Wonka movie, and I know that they are healing in some ways but holding me back from healing in other ways.
Another goody from Philippians:
23 The grace of our Lord Jesus Christ be with you all. Amen.
12 I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need.
Then later in the week:
6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
I’m praying to be here:
8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.
And somehow in the middle of things:
13 I can do all things through Christ who strengthens me.
I began the week with the photo treatment of my blood. This was a tougher process than I imagined because of the sheer length of the process and the intense involvement of the nurse, but I feel like now I am kind of in the groove and know how to prepare better to pass the time in more productive ways. Patient education is very important to the nursing staff, so I am told every few minutes (literally) where we are in the process. I would rather not be involved, actually. I would rather mend, read, or type without knowing what my white blood cells are doing. Disgusting. Ugh. This was a kick in the gut, and thankfully, my sweet friend Julie was here after the toughest times to distract me and kept me from completely losing it, knowing that there are many more of these days ahead. Such a sweet spirit.
[Today the treatment went a bit faster, and tomorrow, probably, I will be on a brand new machine that should cut down the time by several hours! This is very, very good news, and I calculated (I didn’t really do the math because I don’t like to, but I figure) that it would save literally days over time. Days!]
On Thursday, we left for Waco to see the family, and those were good times. I made all sorts of pledges to my children about ways we would spend time together. On Friday, we closed on the new property (yea!), and we were to spend Saturday morning there climbing trees (okay, probably not me—I don’t go above 2 feet), playing in the dirt and throwing rocks in the river-can it get any better? We then got several frantic phone calls from Dallas saying that I needed to return ASAP to begin an IV antiviral drug. YOU HAVE GOT TO BE KIDDING ME. It was all due to a misunderstanding in-between the office folk (oh, yeah, and because I need the drug to be healthy-still working on that perspective…). Van quickly checked out a new baby at the hospital and we picked up ice cream just so I could watch Zane eat it—that boy loves chocolate. Van and I were able to wait until Cade was out of school so that we could say goodbye to him, and we left my parents yet again with all three children, one wailing. We did have a few minutes for Van to swing by Taco Bell (never, ever...ever again) while I grabbed the fussiest little fur clearance vests from the outlet mall (matching!) for my nieces. That took the edge off for some stupid reason, and then my frustration was mostly at Taco Bell.
We arrived in Dallas. A courier from Walgreens arrived at the apartment with a giant box of medical supplies and the IV drug, and about 8:00pm, a home health nurse arrived. We endured a grueling process of paperwork and instructions about hand washing(!). I can out-handwash her any day. She was incredibly nice, but it was very humbling. I think the hard part was that she didn't know my history, my abilities, and was not familiar with my treatments or drugs--very, very few people are. Van was so patient, and we got through it. So now I have my very own personal IV pole that I will use for the next 2.5 weeks, and I get to do medical stuff which I just LOVE. Fun…..oh, where is that whatever is true, whatever is noble….
Saturday was actually quite enjoyable. Van and I went to the Dallas Farmers’ Market and bought beautiful produce from vendors. Little cucumbers, pineapple, red peppers…just gorgeous. I’ve been buying from Target, so it was divine. Van went into a neat little fly fishing store and bought a little 4 piece fly rod for backpacking that was made locally. It is so cute. I can’t tell you how excited that I am that it will fit in a suitcase on an airplane! Yee-haw! Van ate Julie’s enchiladas for breakfast, lunch and snacks with fresh avocado from the farmer’s market and was in heaven. He was an addict. Saturday was a good day.
Mom and Dad are amazing with the kids and are exploring every inch in Waco. Mom got very excited about the water spray parks, and when they took the kids to ride bikes on Saturday and saw that one was working, they let them get in with their clothes on. It made a big impression on Avi. “I got wet!!!!!” Good stuff. I bugged my parents to death about watching the shuttle launch with Zane and Avi. I was so excited. Zane’s only comment, “It fell apart.” Great. The kiddos are getting some really neat time with their grandparents. Oh, and they did get to go to the new property and hang out! I can’t thank God enough for the beautiful relationship that he has formed in my family. Very thankful. I loved growing up with my grandmother.
Zane and Avi told me about the hot air balloon that went over the house. Zane was impressed with the loud noise that it can make with the fire, and Avi said, “It was wight dere! It was wight dere! It was so pwetty!” Cade informed me that he, "ate cow... a brisket... It is called BBQ," for supper. Oh, and that he, "will be the caboose, not the line leader tomorrow." Very important job. I'm thankful for friends that shared photos and video from the Parent's Day Out program! An unexpected blessing for the day!
We’re attempting to make the shift towards more time with the kiddos on the weekend and more independence for me. This sounds crazy given that I’m booked with so many appointments during the week—especially after the developments of late, but with my energy, it makes sense to start a bigger transition. It just is time. Also, the new treatments seem to be the plan of action going into the summer, so we feel confident that I’m on the road to healing and that there shouldn’t be any more big surprises. It seems like we are less day-by-day and more able to plan for the somewhat-tough-but-oh-so-much-better couple of months ahead.
Tomorrow holds hanging out with Renee with an attempt at Martha Stewart's chocolate creme brulee, learning how to broil steak and sewing projects. We're being domestic. Hopefully a new-and-improved photo treatment machine will make its debut in the afternoon. Not too bad!
The ebb and flow of life really makes me think about where I put my trust. A new friend asked me what she can specifically pray for. Today, I think I would ask to be off of steroids quicker than projected. I'm blowing up like a Willy Wonka movie, and I know that they are healing in some ways but holding me back from healing in other ways.
Another goody from Philippians:
23 The grace of our Lord Jesus Christ be with you all. Amen.
Wednesday, May 11, 2011
A complete night's sleep! It has been weeks, and I am SO thankful. I feel caught up from the crazy wonderful weekend with the children now. As I cared for them, added a new cacophony of medicines and steriod injections, then added a too-long walk that left me with new skin issues I crashed for a couple of days. My friend Carrie and I laid low except to go see the matinee African Cats by Disney and had a nice work out that afternoon (that aggravated the skin issues a little more--hard to know what to do). The movie was amazing. I really enjoyed viewing the gorgeous Maasi Mara on the big screen. The footage of the animals was incredible. I was really impressed with the quality of the film, and it was great to share that time with Carrie.
Today will be the first day of the blood cleaning treatment. My friend Julie brought me some extra books and snacks enjoy the 4+ hour procedure. I think I'll just be sitting/laying down, so it shouldn't be any big deal, and I have a bag of small projects to work with. Today it will be attaching the elastic to batman masks. Very important in a 6-year-old's world! I'm most nervous about what the nurses will do with my central line site, and I pray that the nurses are wise can think of an alternate solution to applying the standard cleaners and scrubbing. The bandages are not behaving, and my skin is very sensitive, so we've got to find a solution to that or they may not be able to peel me out of the seat when finished. Feet are better, and I'm not itchy. Tomorrow, I will have a doctor's appointment followed by another blood cleaning treatment. Regardlless of the agenda for the day, my appointments have been hours and hours long. I feel for the nurses, and it must get quicker soon or there will be a revolution in the waiting room. Some of these people did not bring their batman masks, and they really feel lousy.
All of these appointments are interrupting my sewing projects, but that did not stop me from exchanging my dead sewing machine for an upgrade within a few hours. As I was ordering it from Amazon.com (beat all deals in town), the computer started to encourage me to order within 20 minutes and get $10 same day shipping! What in the world! I nervously chose the option, and a courier from Ft. Worth showed up in a PT Cruiser with my giant package that afternoon. That sure beat driving all over town or waiting for 5-8 days for the free shipping, not knowing when Van would be at the house or I would be at the apartment. Too cool. Now it is time for me to read the instruction booklet, watch the DVD and go to town on my neglected projects. This should be fun.
We close on our 2 acre lot on Friday! Mom and Dad will be staying the weekend to visit and continue their help with kiddos. I am very excited and am starting to dream about the home we will build soon. Currently, our three children happily share a tiny room, but we think that as they grow, our set up will not be practical much longer. Exciting. I also intend on taking Van somewhere after the kids are asleep one night. It has been awhile since we have been a couple of cool cats on a date.
Today will be the first day of the blood cleaning treatment. My friend Julie brought me some extra books and snacks enjoy the 4+ hour procedure. I think I'll just be sitting/laying down, so it shouldn't be any big deal, and I have a bag of small projects to work with. Today it will be attaching the elastic to batman masks. Very important in a 6-year-old's world! I'm most nervous about what the nurses will do with my central line site, and I pray that the nurses are wise can think of an alternate solution to applying the standard cleaners and scrubbing. The bandages are not behaving, and my skin is very sensitive, so we've got to find a solution to that or they may not be able to peel me out of the seat when finished. Feet are better, and I'm not itchy. Tomorrow, I will have a doctor's appointment followed by another blood cleaning treatment. Regardlless of the agenda for the day, my appointments have been hours and hours long. I feel for the nurses, and it must get quicker soon or there will be a revolution in the waiting room. Some of these people did not bring their batman masks, and they really feel lousy.
All of these appointments are interrupting my sewing projects, but that did not stop me from exchanging my dead sewing machine for an upgrade within a few hours. As I was ordering it from Amazon.com (beat all deals in town), the computer started to encourage me to order within 20 minutes and get $10 same day shipping! What in the world! I nervously chose the option, and a courier from Ft. Worth showed up in a PT Cruiser with my giant package that afternoon. That sure beat driving all over town or waiting for 5-8 days for the free shipping, not knowing when Van would be at the house or I would be at the apartment. Too cool. Now it is time for me to read the instruction booklet, watch the DVD and go to town on my neglected projects. This should be fun.
We close on our 2 acre lot on Friday! Mom and Dad will be staying the weekend to visit and continue their help with kiddos. I am very excited and am starting to dream about the home we will build soon. Currently, our three children happily share a tiny room, but we think that as they grow, our set up will not be practical much longer. Exciting. I also intend on taking Van somewhere after the kids are asleep one night. It has been awhile since we have been a couple of cool cats on a date.
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