Sunday, December 12, 2010

Because one child with medical issues isn't enough

For the last couple of months Sophia has been struggling a bit in school. She has had a hard time paying attention and she has had a number of potty accidents. Her teacher suggested we take her to the doctor to get checked out.

Between my observations, the teacher's observations and a discussion with my sister in law, I asked the doctor to refer her to a neurologist. He did (immediately) and we went for our first visit with the pediatric neurologist this last Tuesday.

After taking a family history and talking about what has been going on with Sophia, the doctor was pretty sure she was having absence (pronounce ab-SOHNS) seizures. Basically, what happens is, Sophia zones out for between 5 and 10 seconds. There is no major shaking, no falling down, no passing out, just a kind of empty stare for a few seconds. She is oblivious to anything happening. Sometimes, she will have an accident during one of these episodes. It is "normal" for a child to have dozens and dozens of these a day.

While at the doctor's office, the doctor decided to try to induce a seizure. These types of seizures can be induced by hyperventilating. She brought in a pinwheel and told Sophia to just relax and try to keep the pinwheel turning. After a few seconds you could see Sophia start to get winded, and then her eyes floated down and twitched a little. The doctor spoke to Sophia and got no response. After about 10 seconds, you could see her re-engage. The doctor spoke to her again and Sophia responded as though nothing had happened. The doctor turned to me and said "That is a perfect example of an absence seizure."

She is scheduled for an EEG next Monday (the 20th). It should be interesting - she is not allowed to sleep for more than 5 hours the night before. The appointment isn't until 10am, so we will have to try to keep her up super late and then I will have to get up really early with her and keep her awake until her appointment.

She has started medicine (ethosuximide) that is a target specific medication. It will only help with absence seizures. If , for some reason, she starts to have other types of seizures we will have to change her medication. There is a possibility that these seizures can "escalate" to gran mal seizures, but it is fairly rare according to the neurologist. She may also grow out of it. We just have to wait and see.

As sad as I am about Sophia being diagnosed epileptic, at the same time it is a relief to have a definite diagnosis instead of just wondering why she was struggling so much. Please continue to pray for us. I could certainly use a break from all these medical issues!

Tuesday, November 30, 2010

Modern society invades my home

My kids are leading a fairly sheltered life. We are very active in our Catholic church, the kids all attend Catholic schools and nearly all of their friends are Catholic. But, this past week, they made some new friends.

Last Monday, our neighbor's house caught fire. They have lived there for less than a year and, even though we know them well enough to say hello, we really don't know them well. That has now changed. When I saw the firetrucks, I immediately went over to check on them. They had an attic fire that started above their four year old son's room. It was a chilly morning and they were all huddled together in the front yard while the fire department did their job inside. I offered to take the kids (Christy, 7 and Ronnie, 4) to my house while the adults dealt with the aftermath. The kids gladly came with me and they got along great with my kids.

I am always careful of what my kids are exposed to when around new people, especially new kids. I am particular about what movies and T.V. shows my kids watch, what toys they play with, etc. Also, I tend to eavesdrop on their conversations because you never know what some kids are going to "teach" my kids.

So, here is a conversation I overheard between Christy and Sophia.

Christy : I have two dads and two brothers. One of my brothers is older than me and lives in Bishop so I don't see him much. You're lucky you get to see your brothers a lot. My cousin has three dads and two sisters but she never gets to see her sisters. Two of her dads lived with her at the same time and she used to call one of them uncle, but when her dad moved out she had to start calling her uncle dad. How many dads do you have?

Sophia : Umm. I think I just have one.

Christy : Only one? So how did you get so many brothers and a sister?

While trying to smother my laughter at the total befuddlement of both girls, I was also greatly saddened. For Christy, immersed in "modern" society, multiple fathers and random siblings is completely normal. Divorce, remarriage, half siblings, step siblings, all of these are everyday occurrences for most people. However, we are quite happy in our sheltered little world with one father, one mother, and regular siblings that you have to live with all the time.

Wednesday, November 17, 2010

My latest medical update

I do my best not to focus on the pain and fatigue that my RA causes me. Some days are better than others, and right now it happens to be nearly impossible to ignore.

For many, many weeks I have been taking Prednisone in addition to my regular RA medication, Methotrexate. I hate taking Prednisone. It makes me moody, anxious, moody, hungry, and moody. Did I mention moody? Well, I have tried weaning off, but my pain and fatigue quickly return, so I am temporarily stuck with it. I visited my rheumatologist on Tuesday and, when he listed to all my current maladies, he suggested we switch up my meds. I have known this was coming (which is partly why I haven't been to see him in months) but I am at the point where I am definitely ready for something to change.

So, after a ton of blood work (9 vials!!) I will be starting Enbrel this next week. Enbrel is one of the newer, injection style treatments for RA. Many women in my RA support group are taking it and each one of them has had wonderful results from it. I will, for the time being, remain on the Prednisone and Methotrexate. The Enbrel will take 4-6 weeks to really start working and once it is working then I can start scaling back on the other meds, starting with the Prednisone. Once I am completely off the Prednisone we will try reducing the Methotrexate. I have at minimum a few months before we will now how the new meds are working, but I am hopeful that I will start to return to a more normal state. Well, normal for me at least.

Friday, November 12, 2010

Fall Luncheon

I posted some pictures on Facebook, but I thought I would post a few here with some explanation on the Fall Luncheon for those unfamiliar.

Every year, Sacred Heart School hosts the annual Fall Luncheon. Every year there is an overall theme with each table doing a different take on that theme. There are twelve tables, each seating 40 people. Table hostesses are responsible for decorating their table, providing small gifts and raffles, and generally ensuring that your table guests have a good time.

This year's theme was Golden Jubilee since this was the 50th anniversary of the Luncheon. Our table decided on a 50th wedding anniversary as our theme. Other themes included Queen's Jubilee, King Midas, Golden Ticket (Willie Wonka), Pirate Treasure, the Oscars, Hollywood Walk of Fame, California the Golden State, etc.

For our table we were able to find parishoners who had just celebrated their 50th wedding anniversary, so we were able to honor them at our table. Our color scheme was white and gold and we were even able to get a wedding cake! The table, though a lot of hard work, turned out beautifully. The two most important parts - our guests were pleased and we were able to raise money for the school.




May God continue to bless Ernest and Maria Columna. They are truly an inspiration for us all.

Wednesday, November 3, 2010

Thank God for health insurance

Today, I am celebrating the fact that I have great health insurance!

Today was Sebastian's first of many visits to the dermatologist. I really liked the doctor, despite the fact that he looks about 12 years old. He was great about taking the time to explain everything to me - not only the specifics about vitiligo, but also the many treatments available. He was quick to explain that there is no cure and, though there are many treatments, not every treatment works for everyone. The biggest concern is that this vitiligo is called "confetti" vitiligo, meaning that it doesn't have a regular pattern but is scattered all over the body. Confetti vitiligo can be very aggressive, but the doctor is fairly confidant that we will be able to slow/stop progression because we are catching and treating very early in it's development.

Step one is a non-steroidal topical immuno-suppresant. As I said before, his immune system is attacking the melanocytes, so the hope is that this topical will suppress his immune system only in those spots. If this doesn't work, we will then graduate to a steroid based immuno-suppresant. There are a number of these with different levels of steroids that we can try. If none of those are helpful, there is also treatment with UV lights. The doctor definitely doesn't want to think about that yet due to Sebastian's age. He doesn't recommend UV light therapy until at least 10 years old or if the vitiligo is really severe. So, we were given a prescription for his cream and an appointment in 6 weeks. The doctor made sure that I understood that if the spots increase or worsen before the 6 weeks we should get in sooner.

At the pharmacy counter, I was surprised to be charged $30 copay for this tube of ointment. Then I looked at the "actual cost" - $256!!! Holy cow!

So, today I am extremely thankful for Kaiser Permanente. I know that not everyone thinks highly of Kaiser, but I couldn't be happier. With Sebastian's first visit to the pediatrician, there was never a hesitation to run tests. On Friday, I emailed the doctor requesting a referral to dermatology because I was concerned about finding more spots. By Monday afternoon I had an appointment booked for Wednesday morning. All of this, on top of the prescription cost, makes me so relieved that we have the insurance coverage that we have.

I know that not everyone is as fortunate as we are, and I pray those who aren't able to receive the health care that they need.

Friday, October 29, 2010

Adding another chapter to the Schalow medical drama


Over the summer, Sebastian developed a spot on his neck which, over the last few months, has lost all pigment. A couple of weeks ago, I noticed a few more small white spots on his neck. I decided to take him in to the pediatrician and he took one look and said "Vitiligo."
Now, for anyone not familiar with this, it is a condition in which the immune system attacks and damages/kills melanocytes, causing depigmentation of skin. Hmmm, a retarded immune system, I wonder where he got that?
The good news is that, unlike some cases of vitiligo, Sebastian's doesn't seem to be related to any other auto-immune diseases. He had all kinds of blood work done and everything came back normal. There are some treatments available for vitiligo, but there is no cure. We are waiting on an appointment with the dermatologist and, until then, counting spots.

Thursday, October 7, 2010

Influences

We all have friends who influence us. Some are good influences, some are, well, hmmm.

I know that, for me, the more time I spend with someone, the more they influence me. With this thought in mind, have you prayed today? We all need to remember the importance of spending "quality time" with our Lord. The more time we spend with him, the more we allow him to influence our lives.

Here's another question for you - what do you talk about when you pray? We all have those friends who, at every opportunity, tell us everything that is wrong in their lives. Their world is always on the brink of disaster. They are rarely hopeful or joyful. Is that how we are talking to God? Are we always complaining, demanding, or sorrowful? Guess what - God wants to hear the good things, too! Obviously, we all have difficulties and we certainly need to share them with God (and our friends) but we also need to remember to find the joy in our lives and share that as well. What would happen to our spiritual life if prayer was only an opportunity to complain? Remember that having a good relationship with someone means sharing your sorrows AND your joys.

So, on this celebration of Our Lady of the Holy Rosary, pray with joy in your heart. Spend some time with our Lord and let Him influence you today.

(Thanks to Abbot Damien for inspiring this post.)

Monday, October 4, 2010

I am still here

I am so embarrassed to realize it has been weeks since I last posted anything. Sorry! In my defense, it truly has been a crazy couple of weeks. I will give a quick synopsis.

First, Darian is running on the school cross country team. Since the end of August, this has involved practice after school twice a week and a race once a week. His last race will be this Thursday, so I am hoping for some of our craziness to die down a bit. He has LOVED doing this and, even though he is nowhere near the quickest boy on the team, he is hoping to continue running and be on the team again next year.

Another milestone for us has been my two youngest have both started preschool. Sebastian has been attending for over a year, but September 1st was the beginning of Vibiana's preschool career. She is loving it. They go two days a week, from 9:00 to 5:00. Vibiana adores her teacher and I can already see her maturing. She is speaking more clearly and in more complete sentences. Also, she is mostly potty trained. She has not had an accident at school, and at home she is improving. My biggest difficulty with the potty training is the amount of time we spend in the car - it is 1/2 hour to town and sometimes we get halfway there and she needs to go potty. Since there is nothing/nowhere to stop, I just put her in pull-ups when we are driving places.

Sophia is having some difficulties academically and we will be having her tested for dyslexia. She is having a hard time "flipping" numbers and letters and it has reached a point where her teacher is a little concerned. She is also having a hard time focusing. At this point, we need to find out exactly what is going on with her so that we can do what we need to do to help her. She is a great kid and I don't want her to either fall behind academically or start to feel like she is a failure. So, will see if extra work/help on our part is enough or if we need to contact an outside tutor.

On top of all the "kid" stuff, my RA has been giving me problems and Jason has been really busy and stressed at work. Diaconate formation is back in full swing and right now we are just trying to keep ahead of it all. Also, Jason was in a car accident and now our insurance has denied the claim. I won't go into all the horrid details, but we will be involved in fighting our insurance company.

Many days I think of this great quote from Mother Theresa : “I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”

Yep. I really wouldn't mind if you eased up a bit, Lord.

Tuesday, September 14, 2010

I am untouchable

At least to the "regular" orthopedic surgeon.
I have a ganglion cyst on my right wrist. I have had surgery previously to have this cyst removed, but it returned about 6 months ago. I have put off going to the doctor to have it looked at, but it is causing me enough discomfort at this point that I finally went in. The orthopedist ran some x-rays, took one look, and said "I am not touching your wrist. You need the hand specialist."
Apparently, not only is there scarring from the first surgery but there is "significant" joint damage from the RA and a regular orthopedic surgeon can't perform surgery.
So, on the down side, I have to see the specialist who only performs surgeries at the Kaiser in Panorama City. On the up side, further proof that I am special!

Tuesday, September 7, 2010

Lead Thou me on!

On September 19, the Catholic Church will celebrate the beatification of Cardinal John Henry Newman. If you're like me, his name is certainly familiar but I don't know nearly as much as I could (or should). We will be hearing much about him over the next few weeks, even in secular media, and now is a great opportunity to educate ourselves about his work.

First, I recommend visiting www.newmanbiography.com. This is a website dedicated to two new books about Cardinal Newman.

The first book, out now and available here on Amazon, is titled "Take Five: Meditations with John Henry Newman" and authored by Mike Aquilina and Fr. Juan Velez. This is a great book focusing on short, five minute meditations. I guarantee that each and every one of us, regardless of how busy we are, can spare five minutes a day on our spiritual nourishment.

The second book, forthcoming, is a biography "John Henry Newman: Passion for Truth" written by Fr. Juan Velez. This book will lead us through Cardinal Newman's "search for religious truth", covering his journey of conversion from Evangelical Protestantism to Anglicanism to Roman Catholicism.

I urge you all to take a look at the website and the books.

Some final words, written by John Henry Newman, written at sea on a return to England:

LEAD, Kindly Light, amid the encircling gloom
Lead Thou me on!
The night is dark, and I am far from home—
Lead Thou me on!
Keep Thou my feet; I do not ask to see
The distant scene—one step enough for me.

Tuesday, August 31, 2010

More, more, more

In an experience common with many parents, yesterday I couldn't do enough for my kids. I didn't pack enough lunch, didn't bring the right snack, didn't fix the right dinner and was too mean to let them stay up late enough. When I finally got them off to bed, it was with a great sigh of relief that the day was done. Looking back on my day, I know I did my best but my kids just wanted more, more, and more. How often do we have this same attitude with God? He gives us so much and many of us are still so unsatisfied with what we get.

When I was little I loved trips to the grocery store when my mom would give me a quarter to put in the red prize machine. In went my quarter, a turn of the knob, and out came a random prize. Sometimes it was just what I wanted and other times I would be so disappointed with what I got that I would go back and hound my mom to give me another quarter to try again. She never gave me another quarter. Instead, she would always tell me to be happy that I got anything.

Last November a very close friend of mine was diagnosed with stage IV metastatic breast cancer. Her cancer was extremely aggressive and by the time they found it, it had already spread to her bones and liver. Our entire church and school community united in prayer. Through God's grace, she was able to participate in a clinical trial at UCLA for a new breast cancer wonder drug. Today, the large tumor in her breast is gone, no surgery is needed, and there is no trace of active cancer. However, she will never be declared NED (no evidence of disease) because of scarring on her skeleton. Potentially, this cancerous "scarring" can reactivate and require her to undergo more traditional chemotherapy. But, when she was first diagnosed, we never imagined that she would be as healthy and happy as she is today. Even though some may think we didn't get a complete miracle (declared NED) she is nonetheless truly a walking miracle. Whether she lives 38 more years, ten more years, or one more year, I can thank God everyday that she is here today. God did answer our prayers and we need to remember that.

We often treat God like a great big prize machine. I am going to put in x number of prayers and I expect to get the perfect prize. But, just like those grocery store machines, God doesn't always give us exactly what we want. Because, like a parent with their child, God know what we need better than we do. Our children may want ice cream for dinner, but we know they need something more substantial. And we, like our children, may throw tantrums and get angry for not getting exactly what we want. Today, instead of harping on what we don't have, let's all take some time to thank God for everything we do have.

Sunday, August 29, 2010

Marriage and vocations

Remember how I can't say no? A few weeks ago our pastor asked Jason and I if we would be willing to give a talk at a retreat he was leading the last weekend of August. He asked us to speak about marriage and vocations. We agreed and, of course, didn't think about it again until last week. In typical Briana/Jason fashion, we were up late last night finishing up our talk scheduled for this morning. Fortunately, I think it went pretty well. I am not as comfortable a public speaker as Jason is, but overall I think we did a pretty good job. I don't have a copy of Jason's talk because he tends to just work off of a simple outline, but I decided to post my written copy of the talks I gave. Our talk started with "Revolutionary Love" by David Crowder Band. Jason did some introductory comments about the commitment we make in the sacrament of marriage. Then I did my first talk on Jason's vocation and its effect on us. Then Jason talked about dealing with my RA as a couple and as a family. Then, I talked about our role in the vocational formation of our children. Then, Jason finished up with some closing comments and "Love Song" by Third Day.

My Talk #1

When we accept God’s call to be a husband or wife, we not only accept responsibility for making our own walk with God, but for supporting another person in theirs – in accepting that responsibility and trusting in God, we allow God to transform both of us.

On top of being married with four children, Jason is in his 3rd year of formation to be a deacon in the Archdiocese of Los Angeles. When Jason first told me that he was being called to the diaconate, I was his biggest supporter. I encouraged him because I also felt that he was being called to this ministry. As we went through the application process and the various interviews, I began to truly realize the commitment that I was making. I was concerned – here we were with four very young children starting on this intense five year journey. Five years of two full Saturdays a month, numerous books to read and papers to write. From the beginning it was made clear to me that the wife is expected to travel side by side with her husband, participating in each class and every project. I have many people not understand why I have to do all of this with him – after all he is going to be a deacon, not me. But, even though I am not called to the diaconate, through my vocation of marriage I AM called to be a deacon’s wife. In every interview, they asked us again and again if we thought we could handle it. We always said yes and I would go home and pray and pray “Lord, are you sure we can make this work?” Always the answer I got was “yes.” We put our trust in God, and with God’s help we cleared every hurdle.

Now, three years into the journey, I am beginning to reap the rewards of that trust I put in God. I have learned more about scripture than 11 years of CCD ever taught me. I have a new confidence in my faith and confidence in my ability to minister to others. I always have people ask me “You have four kids, you volunteer at school and church AND you are in diaconate formation with your husband? How do you do it all?” My answer is almost always, “I don’t know how it all gets done. It must be through the grace of God because I certainly couldn’t do it on my own!”

In supporting Jason on his path, I have gained a new appreciation for my Church. Our faith as a couple has increased and strengthened and provided us with a strong basis to withstand whatever trials will come our way.


My Talk #2

I don’t think any marriage or vocation talk would be complete without talking about children. I have some friends who want all of their children to be priests or nuns. I have other friends who want all of their children to get married so they can have lots of grandchildren. But I think instead of either of those mentalities, we should instead wonder what it is that God has in store for our children. What path does He want them to follow and how can I help my kids to open their hearts and have the strength to follow God’s will?

When my oldest son was in preschool his teacher was showing him how to type and print out a letter on the computer. What Darian typed was “When I grow up I want to be a priest at the abbey.” A few years later, in first grade, each child was given a paper with the words “When I grow up” across the top and they were supposed to draw a picture of what they wanted to be. These were hanging up on the wall at back to school night to surprise all the parents. Amidst all the firemen, policemen and astronauts is Darian’s picture of the sanctuary of Sacred Heart Church with the words “I want to be a priest” underneath. One evening, not long ago, we were discussing with our kids the idea of vocations and what God might be calling them to do. Darian, very definitely said he would be a priest. Sophia, our six year old, said maybe a doctor and a mommy. Sebastian, the four year old, thought for a second and then said “I want to be a ninja.” Every single person has a different vocation in life, and part of our job as parents is to help our children, even at an early age, learn to listen to what God wants from them.

Twice a month, I take my two youngest kids to a local convalescent home. When we were first invited, I was a little nervous as to how my 3 year old and 2 year old kids would react. The plan was to visit and pray a rosary. My kids ended up loving it and they now anxiously await the next time we visit the “Grandmas and Grandpas.” After one of our visits, Darian asked Sebastian if he had fun visiting grandmas and grandpas. Sebastian said “Yeah, it’s fun making people happy.” It’s a beautiful thing to see this little boy learning the joy of ministering to others. Through experiences like this I hope he learns to keep his heart open and listen to God’s call, even if it means not being a ninja.


Saturday, August 21, 2010

Hair today, gone tomorrow

Another lovely side effect of my RA meds is hair loss. I recently started experiencing this and its starting to really concern me. I'm trying not be vain about the whole thing, but maybe I'm not really succeeding. I have contacted my RA support groups and have pretty unanimously heard that although some vitamin supplements can help slow the loss, nothing short of stopping meds altogether stops the hair loss. And, those who have stopped meds haven't had much luck re-growing lost hair. Some medications are worse than others (mine being top of the list, of course) so changing meds might be an option. I'm trying not to freak out too much, but really...

this is one morning's worth. Not brushing my hair, just running my fingers through it. So, even though it isn't time for wig shopping just yet, I am seriously debating cutting it all off to see if that helps me not be so weird about the whole thing. I have it longer than I have had it since early high school, so cutting it would be a bit traumatic. Vanity, oh vanity...

Wednesday, August 18, 2010

My new favorite person

is Darian's new fourth grade teacher, Mrs. Gaharan. My boy is so excited about this year! His first comment was "It's going to be a lot if work but I think my teacher is going to make it really fun." He has homework, but part of his homework is to give each family member a hug. Darian told me Mrs. Gaharan has a different "attitude" about almost everything. Last year when he brought home all of his books that needed to be covered, it was with specific instructions that parents had to do it. This year, Darian said his teacher told him that a parent could help, but it is his responsibility. She is encouraging them to do things on their own as opposed to last year when parents were made too responsible for their kids work. I am already feeling relieved!
Sophia also had a great first day. She is much less verbose about the whole thing. She said "First grade is fun and my teacher is beautiful! "
I think this will be a good year for both my Sacred Heart kids!

Monday, August 16, 2010

Procrastination

My two older kids are starting school on Wednesday. At the end of June, we sorted through all of their school uniforms and put them away for the summer. This morning (yes, less than two days before the start of school) we got out the bins with their uniforms to take an inventory of what still fits. Fortunately, Sophia is set. We had enough hand me downs from other families at the end of last year that she has enough shirts/pants/jumpers/skorts to last probably the entire year. Darian, however is a different matter entirely.

Toward the end of the last school year (probably May) I had to buy Darian new shorts and a pair of pants. I took him in to try things on and we found size 8 was just roomy enough it would get us through the beginning of this year. We were wrong! After doing inventory and making him try on numerous shorts and pants, we discovered he has ONE pair of pants that fit. No shorts. And school starts day after tomorrow. I will probably be spending some time driving around to Walmart and Target trying to find something in his size. I am seriously wishing I had done my inventory a few weeks ago. But, knowing me, I will probably make the same mistake again next year.

Saturday, August 14, 2010

Harsh dose of reality

A few weeks ago, I was informed of a woman on our RA support group who had become unintentionally pregnant. She had been using an IUC as birth control. She was also on the same medication as I am, methotrexate. All of us on this medication have been told by our doctors and pharmacists how dangerous to a fetus this medication can be. Understandably, this woman was very concerned about her pregnancy - not only how the medication would effect the baby, but how was her RA going to be during a pregnancy. The support group reassured her as far as RA during pregnancy - many women had experienced remission during pregnancy with the RA not returning until after delivery. However, no one had personal experience with a pregnancy that was exposed to the medication.

This morning, she contacted us to let us know that she lost the baby. She went to her doctor for an ultrasound and they discovered that not only did the baby have no heartbeat, but many of the limbs were malformed as well as an absence of a brain. Our entire support community is grieving over this right now. It brings home to us all the harshness of this medication we have to take in order to control our disease. Please pray for this mom and her family.

Sunday, August 8, 2010

Yet another "cure" for RA

Today, I am laying around being very achy. I am disappointed because Jason and I were supposed to go down to Redondo Beach and visit with our diaconate class, but with my joints being in this state, the drive was simply not an option. This is just one of those things that comes with having RA. There are good days and not so good days. So, on this not so good day, I was catching up with my online RA support group and discovered a link someone posted to a book titled "The Bible Cure for Autoimmune Diseases". The summary states that "Autoimmune diseases such as rheumatoid arthritis, lupus, chronic fatigue syndrome and multiple sclerosis do not have to rob you of the vital health God intended for you to enjoy."

My initial reaction - HA! Many of us with these chronic diseases have heard so many various "cures." Various diets, exercises and nutritional supplements that have "cured" someone's brother/sister/cousin/neighbor. I looked over the information on the book and was mildly disgusted with the approach - a daily bible verse, along with nutritional supplements sold by the author, and viola! Cured!

As I read more into this book though, I became more and more angry. This "doctor" claims that people with autoimmune diseases simply need to watch their diet (and stick to his nutritional supplements) and dedicate their lives to God and God will cure them. He goes on to "inform" the reader that all diseases are a result of our own sinfulness and only when we can give up our sins and turn to God will we be healed of our useless suffering.

If I had encountered this man today, I would have beaten him with my cane. This disgusting mentality is what not only gives Christians a bad reputation, but discounts the true healing power of God. Can God heal me? YES! Will He? I don't know. For whatever reason, God has allowed me to have this disease. Maybe someday I will understand why. In the meantime yes, I suffer, but certainly not uselessly. The meaning of suffering, well, that is a post for another time. For today, I will continue to take my medications, do my best to exercise and be healthy, and always continue to pray. God has given me this cross and although I may not like it, I will continue to carry it.

And may God help the author if I ever run into him, especially on a day when I am using my cane.

Thursday, August 5, 2010

Where in the world has summer gone?

I am sad to announce that I have completed all the school supply shopping. Don't get me wrong - I'm glad the job is done, but I am amazed that it had to be done already. I am not ready for school to start! I am not ready to go back to waking up early, fixing lunches, driving back and forth to town twice a day and dealing with homework.

Added to that, when Sebastian returns to preschool in the fall, he will be taking his baby sister with him. On the one hand, I am excited to have all my kids in school (at least two days a week) but it is bittersweet - my baby is big enough to go to preschool!

I am not sure what I am going to do with all my new free time - I am sure between school and church I will be able to fill the hours. And, of course, I will have plenty of time to start blogging more...

Monday, July 19, 2010

Book Review

While I read nearly constantly, I rarely feel the need to post a review of what I am reading. This is mostly because I read a bunch of bad "girly" fiction. This last week has been the exception. I just finished "Tattoos on the Heart: The Power of Boundless Compassion" by Fr. Greg Boyle.

For those of you not familiar with Fr. Greg, he is the founder of Homeboy Industries in Los Angeles, an organization that helps gang members to reform their lives. He has a pretty incredible personal story and his work with Homeboy is phenomenal. I have heard many of his stories via Jason (Fr. G says mass once a month at the probation camp that Jason helps at) and his stories are often funny and always touching. This book is a compilation of his experiences over the last 20+ years working with gang members. This is one of those rare books that had me laughing, even as tears ran down my face. Fr. Greg helped me remember that even though the men and women that he works with may seem a world away from me, we are all children of the same God, one who loves us all, despite our mistakes.

Please, please, please, buy his book! It is available on Amazon and Kindle.

Wednesday, July 14, 2010

Battling RA

A little over two years ago, I was diagnosed with Rheumatoid Arthritis. I was fortunate that I was in the early stages when diagnosed, so hopefully management with medication will help to slow the disease. However, it is a disease for which there is no cure. This is a disease that I will have to live with for the rest of my life. This is a disease that is often misunderstood - I often wish it came with purple spots so that people would know that I was sick instead of just thinking I'm lazy. My friends at RA Chicks posted this beautiful video on battling RA that I wanted to share.

Sunday, July 11, 2010

Is it possible for me to say no?

All evidence shows that no, I can't say no.

A couple of months ago, I discovered an RA (rheumatoid arthritis) page on Facebook. I "liked" it, and began commenting and conversing with other women with RA. I got to be fairly good "friends" with the founder of this page. Her fiance set up a website (separate from Facebook) and I helped her with a few suggestions for moderation - some people were leaving inappropriate comments and starting some nasty arguments. The main Facebook page has grown to over 4500 members and a secondary page about a medication that we take has about 400 members. Niki has become increasingly overwhelmed with it all and asked if I would be willing to co-admin one of the pages with her. Since I obviously don't have enough to do, I agreed. Ugh.

So, I get to kick people off who are being stupid (because NONE of us want to hear about how exercise is going to cure our RA) and start conversations about the things that concern us - how different meds work, all our different aches and pains, and mostly help create a place for us women suffering with this hateful disease to come together and commiserate. This should be fun, right? Certainly it is a project worth my time, even the little time that I have.

Friday, July 9, 2010

No, this blog has not been abandoned

I was a little embarrassed to hop on here today and realize it has been weeks since I last posted. Oops! So no, the blog is not abandoned, the author's time is simply being devoured by the summertime antics of four kids.

Don't misunderstand. We aren't busy with fun, exciting things. We have made a few trips to the orthodontist (with more to come), a few trips to the pediatrician (conjunctivitis), playing in the sprinklers nearly every afternoon (the kids, not me), lots of T.V. watching, video game playing and tons of reading (at least for me and Darian). Of course there is also the near constant arguing, whining, tattle-telling, and crying. Typical summertime! I will have some relief this month since the 3 oldest will be attending summer camp with the Carmelite sisters. Thank God!!! I am certainly ready for a break. As soon as my mind is able to function a little better I will resume more frequent postings. In the meantime, don't forget to check both of Jason's blogs. That's right. My overachieving husband has two blogs, here and here. He is maintaining two blogs, working on his Master's degree and working a gazillion hours a week. I stay at home with the kids, read crap novels and can't even maintain my one blog. I post on Facebook fairly often though - does that count?

Tuesday, June 22, 2010

Another step into the world of orthodontia


Sophia's beautiful smile is about to get a bit of a tweak!

My sweet girl has a few orthodontic issues that we have begun correcting. First, and most importantly, she has a cross bite. It's kind of hard to tell in the picture, but her lower jaw is shifting to the right and beginning to cause problems. Today, we picked up her "spider" retainer that she will wear for the next year. This retainer has a key that we turn once a week that will slightly expand the retainer and in turn slowly expand her palate. She is pretty excited because they let her pick a purple sparkle retainer with a pink case. Of course, now that she has had it in all day and her mouth is sore she is not quite so excited about it.

After this first year, she will then be fitted with a "coffin" appliance, identical to Darian's. This appliance will also expand her palate, but in order to help with crowding instead of the cross bite. My kids seem to be cursed with huge teeth and little mouths. She will probably have that appliance for another 1-2 years (bringing us to about 8 or 9 years old) and at that point they will probably put braces on her for a year or so to help with the crowding.

Fortunately, we have excellent insurance and our orthodontist spreads out payments for our portion over the next year, so it actually isn't too painful financially. Of course, they are more than willing to work with us because we have two more future patients. Oh, and Darian just broke his appliance so we have to go in and get that replaced and that will be 100% on us. At this point, it's almost embarrassing how well the staff is getting to know us.

Monday, June 7, 2010

Twelve years is a loooong time

This past weekend, Jason and I celebrated our 12th anniversary. Since we had class on Saturday, we stayed fairly close to home and spent the weekend in the Arcadia/San Marino area visiting the Huntington Library.
If you have never had the opportunity to visit the Huntington, I highly recommend it. When I was a girl, my Grandma Rose loved going to the Huntington to visit the gardens and the Gainsborough paintings. Some of my best memories of my grandparents are of walking through the gardens. Jason and I had a wonderful time and hopefully we will have a chance to take all the kids one day soon.




Walkway to the English Tea Room


Path to the Rose Garden


One of the oldest roses - planted in 1940



I loved the way these grew in bunches


The Japanese Garden


Bonsai



The Chinese Garden and Tea House


Bamboo Forest



I loved the purple color of these succulents.



Cacti Garden


Colorful Blooms

Friday, May 28, 2010

An incredible ministry

When I was a young girl, my parents, for a short period of time, were involved in being EM's to the sick. Twice they were called upon to bring communion to a convalescent home. I vaguely remember the smell and the discomfort of strange, gnarled hands reaching out for me (I was about 7). What I remember most, however, is the pure joy on some of the faces we visited. They were so happy to get some attention, especially from my younger brother and I. It was with that experience in mind that I (and my two youngest) became involved in visiting one of our local convalescent homes with my friend Carmen.

A few quick words on the facility we visit - this is a very clean facility. It also has numerous, attentive staff. They have a full schedule of social activities on top of all the physical therapies and exercise available. With all that in mind, this is also a "last stop" kind of facility. Most of these people will never leave. Those who are able to leave their beds are all in wheelchairs, many of them not coherent enough to participate in much of anything. Some have family that visit, but many do not. The caregivers do their best but it is kind of a sad place.

We have been visiting twice a month for about 9 months now. I have mentioned before the comfort and joy our simple visits can bring. We visit, say a rosary, and pray with them. We have asked a number of times if they would like for us to bring communion, but they always refuse ("they" being the 2-3 "regulars" we have). About a month ago, we were asked to bring communion to a resident. When we arrived, we learned that she had moved to the hospital. We decided to do our "usual" prayer service and then ask if anyone wanted to receive the communion we brought with us (only 1 host). Well, of course, Jesus drew quite the crowd for us. We had the largest group yet and we had 5 people who wanted to receive. We did our best to fracture our 1 host so that everyone could receive. It was a wonderful experience.

For our May visits, we were asked to cancel our visit at the beginning of the month and just come at the end of the month. We decided instead of a regular visit, we would arrange for a mass. So yesterday morning we arrived - myself, Sebastian and Vibiana, Carmen, Angela (a new RCIA graduate) and Fr. Richie. We walked into the activity room to find nearly 20 residents present - definitely the largest group we have ever drawn. Throughout the course of the mass we had no less than 5 people in tears. At the sign of peace I spoke with Theresa, one of our regular attendants. She was sobbing and said to me, "I haven't been to mass in four years. I had forgotten everything I was missing!" Another woman, with tears running down her face, told Carmen, "I'm not sad. I can't stop crying because I'm so happy." One gentleman, when we asked if he was Catholic, said "No, I just felt like being here to praise God."

A few hours later, when we were picking up Darian and Sophia from school, Darian asked Sebastian if he had fun visiting the "Grandmas and Grandpas." Sebastian said, "Yeah. It's fun making people happy."

Son, I couldn't agree more.