M&M's Soap Box Life

My interesting life stories: the funny, the sad, the frustrating, the ridiculous, the boring, etc.

[mysoapboxlife]

[mysoapboxlife]

The Point of the Story

May be I am overly sensitive about this due to my own experiences, but two comments just rubbed me the wrong way last night, and their subsequent responses sent me to a place where I wasn’t sure if I should laugh, feel pity for these people, or to be even more ticked off.

I don’t follow the page, but I have come to know about Prayers for Leland https://www.facebook.com/PrayersforLeland through a member of the JDM support group I have joined. Like many others, I had prayed for Leland’s healing and recovery even though I had never met him. Sadly, Leland passed away on Friday after a month long battle. When the parents went back home to pick out an outfit for Leland’s funeral, they found a note written by Leland from who knows when and posted the note on the Facebook page. That post went viral and was shared thousands of times on Facebook. So of course it became part of Fox News yesterday. http://fox43.com/2015/09/29/mother-finds-heartbreaking-note-from-son-who-died-after-battle-with-brain-infection/

Most people’s responses were that of condolences and sadness, but somehow a few sarcastic people voiced their opinions and called the story a hoax. Even though I don’t personally know Leland or his parents, I was very offended by these comments and even responded to these strangers--which was very uncharacteristic of me:

CT:  Wait a minute! He contracted the disease a month ago, and two weeks later was hospitalized. So two weeks went by, with him in the hospital, before he died? But the parents came home afterwards, and found the note on the dining room table? Sounds like an urban legend hoax, sorry. Or some kind of hoax. How did the note get on the table? And why does the handwriting NOT look like a six-year-old child's?

Me: Whether the note was real or not is not that important. What's truly important is that the Shoemake family just lost their precious boy. The boy's month long battle with this brain infection has been documented and followed by well over 13,000 people on Prayers for Leland page. Let's focus on what's truly important, be sensitive, and use our words to build up and not to tear down, especially when a family and a community is going through a very difficult time.

CT: The note is the point of the story. Of course it is important!

I felt like saying to CT that she totally missed the real point of the story. While her skepticism was valid, I felt that her questions were inappropriate. And I hope that when CT has to experience a similar heart wrenching death of a loved one that she would be surrounded by people who have more heart and sensitivity.

TMC: That's not absolutely heartbreaking or anything.

Me: Watching your own child fight for his life at the hospital for a month is heartbreaking. Having your child die in front of you after all the medical interventions and 13K people praying and following your page is heartbreaking. Finding anything that reminds you of your dead child is extremely heartbreaking.

TMC: Yes, I know it's heartbreaking. It was a figure of speech.

Ok, TMC. I don’t even understand your point. What figure of speech? You should have just not said anything more....

It saddens me to see how heartless people can be. It is one thing to not feel for a person, but it is another thing to add insult to the injury. I hope Leland’s parents find comfort in knowing that Leland is no longer suffering and is back home in a much better place. Rest in peace Leland! 

that http://www.moodyfuneralhome.com/fh/obituaries/obituary.cfm?o_id=3323192&fh_id=14307

[mysoapboxlife]

Started with Death, Ended with Death

Today is just one of those days--a day full of tears. This morning we said goodbye to our former pastor. I had the honor to be asked to help out with the translation of the service, and it was a beautiful celebration of a life well lived. Even though we know our beloved pastor is in a much better place in the Lord’s arms, it is never easy to say goodbye.

For some reasons i couldn’t sleep tonight. I kept tossing and turning, thinking about “death.” I even started praying for T, whom we had been praying everyday for a while. I would not say that I am gifted in premonition, but there has been times that my “dreams” or “thoughts” have come true. By 3:30 am, I was still wide awake, so I decided to read my Facebook news feed, and the first thing I saw was T’s devastating news.

T had the same category of autoimmune disorder as my son, but T was critical even though her disease involvement was not as extensive. My son was a classic JDM with skin, muscles, and blood vessels involvements, whereas T only had muscle involvement. Ever since T’s mom joined the JM Caregivers’ facebook group, our small JDM moms prayer group (comprised of 20 members) had been praying for T on a daily basis. We were overjoyed when we found out that T was finally taken off the ventilator after 55 days. She was making progress and seemed to be turning around. She even started talking and asking her mom for food!

Unfortunately this week T contracted pneumonia. The doctors had to put her in an induced coma, and she had been fighting for her life the last two days. After all the medical interventions, tonight T was declared brain dead. T’s mom had to make the difficult decision to let family and friends say their goodbyes and to unplug her daughter the next morning at 11 am. I didn’t know what else to say except to give T’s mom my husband’s and my favorite verse: Psalm 18:2 “The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.” It is so hard to see your child so sick, and it is even harder to have to sign that paper to disconnect your child. I knew it would take a huge miracle for T to come back, but I said that prayer anyway. I wasn’t sure if T’s soul was already in heaven the moment her brain stopped working, or if she would transition to heaven when she becomes disconnected the next day.

Until my son got sick last year with Juvenile Dermatomyositis (JDM), I really never understood what autoimmune disorder is about. It is so easy for us to take it for granted how our immune system works. But once you go through a traumatic health and medical experience with no cure, it is really hard to believe that people can ever say that there is no God or that we are not part of a creation by someone much greater and much more powerful.

Our immune system is so intricate that even if there is a slight error, lots of things crash with it. The human body simply can’t survive it. Yes, when everything is working right in your body, a little cold virus won’t kill you. But when your immune system doesn’t work right, a little cold virus triggers runny nose that triggers persistent cough that triggers inflammation in the lungs, and within a short time you go from a little cold to a full blown pneumonia or bronchitis. And yes, if you are healthy and your immune system can sustain the damages, you will just need a round or two of antibiotics, and voila, you are good as new! But no one can ever understand a mother’s agony and anxiety unless they have also dealt with a child with autoimmune disorder or who is immune comprised.

This morning another pastor approached me at the memorial service and told me that he has been praying for my son. He said sometimes we don’t know why God allows trials, but He has His reasons and His purposes. Had my son not been sick with JDM, I would have never known about this rare disease, and I would have never met this small group of moms who go through things that very few people would understand. So yes, I am convinced that God has called me to this JDM mission field.

[mysoapboxlife]

Choosing a Safe Sunscreen for Children

Two years ago, my oldest daughter was diagnosed with a rare disease called Juvenile Dermatomyositis (JDM). JDM can be exacerbated by the sun so we became much more diligent about sunscreen. It’s not easy to escape the sun in south Louisiana but there are options to help lessen the effects. I’m the type of girl …

[mysoapboxlife]

Common Cure for Rare Diseases: Knowledge

Today, February 28, is Rare Disease Day, an annual international event that aims to raise awareness about the thousands of under-the-radar diseases that significantly impact people's lives. My daughter is one of those people.

juvenile dermatomyositis

rare disease

autoimmune disorder

[mysoapboxlife]

April 29, 2015 Live Blood Scan 2

Today was my son’s second alternative medicine appointment. We can’t say definitively that alternative medicine has helped, but at least we can confidently say that alternative medicine has not made his numbers worse. In fact, my son’s lab looked really good at his last infusion a week ago.

Ever since my son got sick last October, his enzymes have been really elevated. Even though the numbers have been coming down and improving, it has been a gradual and slow process. Last Wednesday my son’s LDH (indicator for tissue damage) went from 1,106 in December to 770 weeks ago to now 199 in the normal range. And his liver enzymes are totally normal now, not just barely hitting the normal range from 5 weeks ago. 

We have definitely been tremendously blessed by God’s grace and mercy throughout this process. Given that my son was such a classic dermatomyositis, it is nothing short of a miracle that he is coming out of this pretty much unscathed. Right now at the age of 8, he doesn’t understand or see it yet. But he is truly a walking miracle and will have a great story to share.

Even the naturopath physician today was impressed and happy with my son’s results. The lab numbers looked good, and his live blood scan showed major improvements. His red blood cells are not longer stacked together (the rouleaux). The red blood cells still look like they have spikes,but that’s because of the calcium deposits. But the naturopath physician feels very confident that the amino acids Chelation will clear that up shortly.

The naturopath physician also gave us some samples of Keprex. Right now at this moment I am still on the fence if we are ready to try this alternative cox-2 inhibitor. Yes, the timing couldn’t be better because our rheumatologist has decided to put my son’s infusion on hold right now. But at the same time he is still on his daily plaquenil and weekly methotrexate injection. Yes, this particular naturopath physician is a clinical pharmacist and is certain that Keprex does not interact with the conventional Western medication treatment, but it still requires courage to take that leap of faith to try something new....

[mysoapboxlife]

Julia Child’s Brilliant Trick for Perfectly Poached Eggs

Don't you just love poached eggs? This is the easiest and best method I have ever tried. My 6 poached eggs all came out perfect!

[mysoapboxlife]

Dermatomyositis and Alternative Medicine - April 6, 2015

My son was diagnosed with an autoimmune disorder called juvenile dermatomyositis on December 1, 2014, and so far, he has been responding really well with IVIG (intravenous immunoglobulin), high dose steroid infusion (methylprednisolone), oral steroid (8 ml prednisolone), chemo drug injection (0.5 ml methotrexate), and Plaquenil (hydroxychloroquine). Even though life is not back to the normal we had before my son started getting sick last October, my son is doing really well—a happy boy who is active and has been able to go to school.

But deep down inside, I have always been concerned with the long-term effects that all these aggressive medications have on my child. Yes, these drugs have been great at controlling the symptoms and allowing my son to live a relatively normal life, but still because there is no cure, there is no guarantee that my son would actually go into remission eventually.

Today we went to our very first alternative medicine appointment, and my son did his very first live blood analysis. The live blood scan, a controversial screening technique, showed that my son's red blood cells were mostly all clumped together looking like intestines when they were supposed to look like individual spheres. My son had a few good ones, and we were able to see what a normal red blood cell should look like. We also saw calcium deposits and far too few white blood cells. It was really neat to see a white blood cell picking up bacteria, and the good bacteria actually looked like little flies. The doctor also noted that some red blood cells had holes that were way too big and would eventually bend and become anemic.

We were told the first thing we need to do is to be on an anti-inflammatory diet and try to be gluten free. Fruits like papaya and pineapples have enzymes that can break up or separate the clumped red blood cells. And amino acids are important to clear the calcium deposits. Calcium should only be deposited in hard things like bone and teeth, not in joints and tissues or else damages and pains will happen, and that’s how arthritis starts. There is also an oxygen boost supplement, but my son is a little too light in weight to take it. But since his blood cells are all clumped together, his cells are deprived of oxygen, and his white blood cells cannot effectively move around, and therefore fatigue and weakness take over.

So for the time being, my son is given CSI (cell separation intensifier), EPA DHA cholesterol free Norwegian Enteric-Coasted Fish Oil, Policosanol, and Cholesta-Less Plus. And in a month, we will return to see if improvement takes place. My son is also continuing his meds and infusions, so hopefully alternative medicine will open a door to help him reach remission sooner. But because even natural supplements can cause reaction, we have to monitor this process closely. There is the risk that once the red blood cells are opened up more that my son may get a stronger reaction from his meds. And once the cells are broken up, you have to coat the cells but make sure that the cholesterol level does not go up too high. It’s quite a delicate balance to manage. But I am hoping for good results and more significant improvements!

[mysoapboxlife]

Homicide

Today has been a surreal kind of day. A colleague was shot to death last night in her home (presumedly by her husband in a domestic violence/dispute) , but due to the fact this is a high profile case, the news was broadcasted all over the nation before my workplace could even make the announcement through the proper channels.

My co-worker saw the news on People.com, sent a text to our Vice President's secretary, and a "wild fire" started. Everyone was shocked and probably still in denial.

I don't watch The Shield, and I personally don't have any celebrity connections. So this is probably the closest I have ever gotten "involved" with a high profile homicide.

Part of me is relieved that my husband lost his job last year and therefore does not have to deal with this right now in his former department, but part of me is also in denial and saddened by the fact that this was happened in a Christian community. My heart goes out to her two young boys. I hope with time and with the Holy Spirit, they will eventually find peace and be able to deal with the tragedy they witnessed at home. And rest in peace A! You will be sorely missed!

[mysoapboxlife]

Conspiracy Theory of the Flea Infestation

The other day I discovered that our flea infestation is actually not on the inside of the house but in the backyard. So the fleas actually have been hitchhiking into the house. So I sent an e-mail to my brother, as I knew that the news coming from my brother would be better received by my parents than if the news was coming from me.

My brother never responded to my e-mail, so I had a feeling that my parents did not react well to the news at all. I knew in my heart that they would once again accuse my husband for coming up with yet another scheme to sabotage my parents and to create distance between my parents and me.

Sure enough, when I went to pick them up today, my dad’s first question was, “Where do people go to buy fleas?”

Of course I knew where he was going with it, but I still gave him that “you are crazy” look and answered, “Who would want to buy fleas?!?”

My mom immediately chimed in, “I have been noticing these brown pallets/powder thing near the vegetables I plant for a while.”

Even though my parents never said it out loud, I knew what they were suspecting. They thought that my husband had purposely planted the fleas in my mom’s vegetable garden, hoping that my mom would be tormented by the flea bites and that her vegetable garden would be destroyed.

Ironically, I got a few more new flea bites after I picked up my parents, and I even caught a live flea on myself. So I suspect that my parents either already have the fleas on them from last week, or they have bringing new ones from their place. They live in a senior apartment where most residents have pets, so I would not be surprised if my parents are bringing extra friends over to our place.

I know I should not let this bother me, but it does. I know in my head that this is just how my parents will always see my husband no matter how hard we try to please my parents. But somehow I just can’t seem to shake my stubbornness of wanting to change my parents’ thinking and their view of my husband. My friends always remind me that my parents’ viewpoints and their disapproval are irrelevant, but I just have a hard time letting it go. I know what I need to do, but I just can’t help feeling sad and even frustrated….

As soon as I told my co-worker what happened during my lunch break, my co-worker blurted, “Just use the chemical treatment and kill her vegetable garden along with the fleas already! Why even bother to waste your money and energy to try to salvage her garden?!? You try to save it, they blame you. You kill it, they still blame you.”

I know, sometimes I really feel like just giving up….

[mysoapboxlife]

Flea Infestation

I don't know why, but fleas love me. They like biting me a lot more than biting other members in my family. My husband said may be it's because I have less junk food in my body. And I also don't know why, but I am always the one who finds, discovers, and encounters all these "little annoyances" in life. My husband says it's because I am the accountant, and I am trained to pay attention to all the little details that people normally don't see.

Anyway, Friday was supposed to another ordinary day dealing with my parents. They came over to do their things, and I was their chauffeur. Of course, given that it was Mother's Day weekend, we had some bumps and hassles, but the stress was nothing in comparison to what we had to deal with over the weekend after I made my "discovery."

I came home from work and noticed a puddle on the kitchen floor near the sink. Just as I was wiping up the liquid with a paper towel, I noticed dozens of black dots on the linoleum. So I decided to just wipe up the black dots as well, and to my surprise, the dots all jumped. I realized immediately that they were not stain or dirts, they were fleas! So I immediately sprayed Windex on the bugs, hoping to at least keep them "on the floor." 

Have you ever tried to kill a flea? It takes a lot of efforts to kill a flea because they are amazing acrobatics and have these protective shells. Normally as soon as I spray Windex on ants, the ants just die. But not the fleas. In order to kill the fleas, you have to capture each one with your thumb and your forefinger and crush the body with your nail. I know, so gross!  You can't simply just squash them with your fingers.

After over an hour of massacre and clean up, I thought we had won the battle, but that was actually just the beginning of a flea war.  When I came home after taking my parents back to their place, I became the host of at least 10 fleas as soon as I stepped into the kitchen from our garage. I looked down and got freaked out by the sight of the fleas clinging onto my feet. And instead of just dozens of black dots on the linoleum, I saw hundreds. It was all over the kitchen floor. The entire army had been awaken.

Needless to say, on top of a busy Mother's Day and birthday celebration weekend, we had to wash all the beddings, clothes, and spray the entire house with chemical flea treatment. It was horrendous! And I found myself constantly checking for any sign of the flea on me even when I was in my Pilates class. And this whole flea infestation is so bizzare because we don't have any pet. I don't know where these fleas came from and how it all got started. But hopefully, the worst is over and that there is no more flea eggs or larvae at home!

[mysoapboxlife]

First Science Camp

This morning my daughter left with the 5th graders to the week long science camp. This is my daughter's first time spending the night somewhere else without her parents for this long. I am sure my daughter is having a great time in the mountain, but it is hard not to worry about her. I find myself checking the campsite's webcam every so often, hoping to get a glimpse of her. And at one point while I was talking to a co-worker this afternoon, I thought I spotted my daughter in the corner of my eye. But the kids were walking so fast that it was impossible to confirm, not to mention that the webcam refreshes every 5 seconds. And even now as I am typing on the blog, the webcam screen is still refreshing to the left of my screen. Yesterday my son was excited and looking forward to being the only child at home for the week. He said he could not wait to have no one arguing with him, but this evening after we got home, he said he missed his sister. Yeah, the house is so quiet now. My son is at his drum lesson, and I find myself not knowing what else to do except for starring at the webcam--even though I have a ton of things on the to-do list. Tonight will definitely be very difficult. I don't know if I will be able to fall asleep. I am sure I will be wondering all night if my daughter got enough to eat for dinner, if she was wearing enough clothes, if she was able to finish her shower before the water got cold.... I didn't find out until Saturday that we could mail letters to the campsite for the students, so I hope the letters would get to her before she comes home on Friday. This morning I even took a picture of her favorite sleep companion--Wow Wow the dog--and sent a letter to my daughter from Wow Wow. I wish I could see her expression when she opens the letter from her stuffed animal! And I sure can't wait to hug her in my arms on Friday! Why is the time moving so slowly? Shouldn't it be Thursday already?!?

[mysoapboxlife]

My son's teacher asked the class to write about "feelings," and this is what my 7 year old wrote in class: I felt cranky because my mom said go clean your room and fold your clothes. I wanted to cry. I felt happy because I went to the park and I was with my dad. I was riding my bike. I wanted to hug my dad. This is one paper I must keep in the keepsake box!

[mysoapboxlife]

Breakup

With all of our family drama and my husband's transition with jobs, I had decided to not plan or mention anything about Christmas get together unless my parents bring up the topic themselves. In fact, I haven't even mentioned it to my parents that my husband is back in town. My parents are not big on celebrations. They don't care about feasting or eating out, and there is really not very many places left within driving distance that we can take them to go sightsee without paying a hefty admission price. Although my husband has just started a new job, we still have to cut a lot of things out due to his significant pay cut. Even our Christmas cards didn't even make it to the short list this year with our budget cuts. So "mum" is my latest trend....

This morning at the crack of dawn my brother sent an e-mail wishing us "Merry Christmas." I responded back with a simple "Merry Christmas to you too" and hit the "send" button worrying about the "what's next...." The evening before, on Christmas Eve, I already had a scare. My mother-in-law was coming over for her traditional Christmas Eve dinner, and we needed green onions. So I took my daughter with me and went to a nearby Korean market. We had previously run into my parents at that very same market, and just as I was parking the car, I commented to my daughter, "Wouldn't it be dreadfully funny if we run into grandpa and grandma again?" Then the unthinkable happened: I spotted a tall young man and a short older lady walking into the market together, and they looked just like my brother and my mom. I didn't want to take a chance, as my mother-in-law was supposed to be picked up in 30 minutes. I was so nervous that I didn't even want to take a chance to go the other Korean market across the street--where my parents shop too. So I went the other direction to Fresh & Easy to buy the green onions because I knew my parents would never shop at Fresh & Easy. Fortunately, the Christmas Eve dinner with my mother-in-law went smoothly without any more drama.

Surprisingly, the following e-mail from my brother was not about Christmas or a hint of getting together....instead, he informed me that he had ended the relationship with the Brazilian girl and that he doesn't want me to discuss it with the Brazilian girl or to mention it to my parents. I was shocked and sad at the same time. Shocked because this has happened so suddenly. Just a few weeks ago on December 8, the Brazilian girl had Facebook messaged me telling me that her family was gathering together to pray for my daughter's early college examination. Apparently she found out about my daughter's test through my brother. I even thought to myself, "Ok, so these two are still talking after all." Besides, my brother is always the "obedient child," so why wouldn't he tell my parents that he has broken up with the girl since it would be fantastic news to my parents?!?

At the same time, it is hard not to feel sad. I don't really know the girl, but at least she seems to be a believer and a really sweet person on Facebook. The girl's sad expressions and comments keep showing up on my Facebook feed today, and I can tell that she is really hurt and disappointed. And being the big sister, I just don't want to see my brother growing old without his own family and being all alone. But with all of our drama, I am really not in a position to intervene. I just have to let it be and continue to pray that God will provide my brother with someone who will bring him closer to God and someone who can get along with my husband and me....

[mysoapboxlife]

Long Sunday Sermon

Our church doesn’t have its own property, so on Sundays, our congregation meets at a local city theater with stadium seating.  Since my children were much younger when our church used to meet in different venues, my children only know this stadium seating set up and “stage” as the “church,” where Sunday sermons are heard.

  Since my husband has been working in Indiana, yesterday I had to drag my 6 year old son along to accompany my 11 year old daughter to her SEAA testing. While my daughter was taking her 4 hour ACT college readiness assessment test, I joined the other parents inside the lecture hall for the information session and Q & A for the early entrance program. The session was held in a lecture hall with stadium seating.

  My 6 year old has always been very independent and active, and he had no trouble roaming around on his own getting refreshments, looking for bathroom….even finding his way back to the seat next to me inside the lecture hall.  But after two hours of playing his games on the Nook, my son finally complained, “Mom, this pastor talks so looooong. When is he going to be done?”

  I tried to explain to him that the “speaker” was not a pastor, but he didn’t fully get it.  He thought that everyone speaking on a stage in a stadium seating setup on a Sunday is a pastor.

[mysoapboxlife]

Smiley Face Footprint

My husband is in South Bend for a temporary job, and it has been snowing and snowing, like 10+ inches. It took him 3 tries to make this snowy smiley to say hi to us. It's so cute! I just hope he does not get snowed in and will be able to get out and catch his plane tomorrow morning to come home before the major snow storm hits South Bend and Chicago areas.

[mysoapboxlife]

From GATE to SEAA

Last year in 4th grade, my daughter was so disappointed that she didn’t pass the testing to get into the GATE (Gifted and Talented Education) program. It was especially difficult for her because a few of the kids in her class got into the program. I tried to encourage her by telling her that if she does well on the next CST test, then may be she will be given another chance to try out.

  Lo and behold, my daughter scored a perfect 600 in math and got admitted into the GATE program automatically. I totally did not expect that because math has never been my daughter’s strong suit. In fact, I always lose it when I try to help her with her math homework.  So when the CST score sheet was sent home this past summer, my first reaction was, “Did they have a glitch in the grading system?” Then I was even more amused when my daughter told me that she wanted to run for treasurer at school. “Treasurer?” I asked, “You can’t even keep track of your own money, and you want to run for treasurer?” I mean, this is the girl whose money is “all gone” before she even takes the cash out of her piggy bank. And what was even more ironic was the fact that all the top students in 5th grade were running for “treasurer.” None of “A” students tried for the president, vice president, or secretary.

  Anyway, my daughter lost the election on November 5, 2013. It was a devastating defeat for her, but deep inside, I was relieved because I really felt like it would have been too much for her to be a treasurer—though it could have been a good learning experience and may be she would have become better with money. Then she started talking about joining the SOS Club and wanting to be the treasurer for that club….I started to get confused. I am not sure where all these “ambitions” came from….and why always this “treasurer” thing?

  Then last night my daughter handed this envelope to me with the biggest grin on her face. It was an invitation to participate in the SEAA Talent Search (Search for Exceptional Academic Achievement). She was so excited with the opportunity to bypass high school and to be enrolled in an honor college program, but I don’t think she fully understands the level of difficulty to get into this early college entrance program.

  On December 8, 2013 she will be competing with other top students who are already in junior high and high school in the county, and they will all be taking the actual ACT. This girl is already struggling with fractions right now, honestly I have serious doubts how she is going to even pass the ACT, let alone trying to be one of the top 25….but nevertheless it is a great honor to be invited for the try out. I really should be more proud and less concerned, and be very thankful that God has given my daughter all these great opportunities.