The Blame Game

It has been a tough two weeks for me and my little trooper. Asthma found its way to creep into his healthy body and tackled him down again. Taking care of a sick child is not only physically daunting but also emotionally draining. Every time Timmy gets sick I end up doing the blame game, pointing all fingers at myself for my irresponsible parenting and defective genes.

Timmy got his asthma from me and being an asthmatic kid I know how tough it is to have those attacks. I remember spending birthdays in the hospital and getting confined almost every year. My mom took care of me like I’m a fragile bird with a broken wing. Now I’m doing the same except that it really breaks me up inside knowing that he inherited it from me. I find myself apologizing to him every time he’s sick. He doesn’t hear it but God does.

12252010631-001 When we found out he had Neonatal Lupus when he was born I cried buckets. I bawled in front of my husband and parents. I remember my dad comforting me saying that it’s good that we already know how to manage the disease because I’ve had it for years (17 to be exact) and we can take care of Timmy better. As good as it sounded back then to me it was just unbearable. Living with Lupus is not easy and I didn’t want my son to experience it.

By God’s grace, my rheumatologist (i.e. Lupus doctor) said that most Neonatal Lupus cases are transient. They go away once the child develops his own antibodies. She told me not to subject him to further tests. She added that Lupus rarely occurs in men so it could be that my little boy didn’t have it. She advised us to just watch out for symptoms, which I am very well-versed at, but other than that I had nothing to worry about.

10302011093_2 And then his asthma manifested at 10 months old. I jokingly told my husband that our son keeps getting all the bad stuff from me. But inside I was blaming myself again for his health issues and every time he gets an asthma attack the blame game happens all over again. I put on a strong face and double up on my nurturing to restore my son to good health but inside it’s a battle.

His recent attack two weeks ago was no different. Usually, Timmy gets better after a week of medication but this time he didn’t. He was given antibiotics but his cough and colds are still there (yes, up to now). We have lessened his activities so he can rest. I have placed work on hold just so I could attend to him. But his recovery has been slow. His pedia said that it will take 10 days for the antibiotics to fully kick in but she said that he sounded better and he’s on his way to recovery. He was given maintenance meds for 30 days to help speed up his healing.

Phototastic-6_23_2015_b251d9d1-12e5-4acc-9343-e660229fe571My heart broke each time Timmy said, “I feel sick.” I feel a stab inside my chest every time I hear his wheezing, hacking cough. This is one part of parenting that I’d gladly skip. It’s just too much to bear to see your child sick. Good thing, my son remained upbeat and active through it all. He would even encourage me saying, “Mommy, Jesus will heal me.” Or he would say, “Mommy, I feel better now because Jesus healed me.” To which my husband and I would reply happily, “Yes, He did!”

I take comfort in the fact that Jesus will heal me, too. That every time I feel broken and guilty about my son’s health condition He can restore and bring healing to my soul.

psalm103

I have been a recipient of God’s grace all my life. He has healed me time and time again. He forgives me for all the blame game I’ve done and He continuously gives me a new slate to start over once more. His track record of faithfulness in my life is impeccable. He has given me every reason to trust Him. He even “crowns me with love and tender mercies.” My all-knowing God is not too hard on me and I have no reason not to do the same.

So today, as I watch Timmy sleeping peacefully I choose to forgive myself. I choose to fix my eyes on Jesus, the One who saved me, forgave me, and restored me. I choose not to blame myself or anyone for my child’s health condition. I choose to believe in God’s power and ability to bring healing to my son. I choose to rest in His loving arms, knowing that He loves my son more than I could ever love him.

WP_20150616_20_16_14_Pro My son is His. His health is His. Whatever future health problems we’ll encounter I know that we will still remain His. And in that I take the most comfort knowing that He’ll be with us every single time. My prayer is that the next time any of my boys get sick that I’ll be able to stand firm and shun the lies of the enemy. That I will not play the blame game anymore but instead put all stakes on my God who is sovereign and true. I know He will give me the grace to do it and the strength to overcome it. He always comes through for me, always. 🙂

9 And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.

(2 Corinthians 12:9-10)

So I encourage every mom out there who feels guilty every time their child gets sick, Jesus holds you by the hand. He doesn’t accuse us. He extends His grace to us every single day. He knows what we’re going through. God is our refuge and strength, a very present help in trouble (Psalm 46:1). We can count on Him to help us. All we need to do is believe and trust that He can. 🙂

Advertisements

Even Superheroes Bleed

When I look at my husband Omar I see someone strong and invincible. He’s our leader, protector, provider, defender—everything you could expect from a real-life superhero. So when I saw him wincing in pain about three weeks ago, my heart was filled with dread and anxiety. We were about to have dinner when Omar said he needs to go to the bathroom. Almost 20 minutes later, he came back saying that we need to go home immediately because he was having extreme stomach pain. I could tell by the look on his face that he wasn’t doing well.

Our Superhero :)

Our Superhero 🙂

Prior to our dinner, he had a speaking engagement and was not able to drink much fluid before and during the talk. When we got to the mall, he went to the grocery and bought two glasses of gulaman (sweet drink with jelly) to quench his thirst. Half an hour later, his started to feel stomach spasms. So we hurriedly asked the waiter to pack our food and went home immediately. I was so worried because he was breaking into cold sweats and was clearly in pain. I offered that we call my father-in-law to drive instead but Omar insisted that he could do it. While driving, he was perspiring and taking short frequent breaths similar to what pregnant women do when they’re about to give birth. Timmy and I prayed for him and even after we ended I continued praying in my head.

We came home and Omar rushed to the bathroom. The things is, he’s neither constipated nor experiencing loose bowel movement. There was nothing coming out it was just piercing pain and all I could do was watch him. 😦 It wasn’t the appendix either because the pain was on the right side. I gave him Yakult and antacid which helped a bit but the pain kept recurring. I asked him if he should go to the emergency room but he said no. After almost two hours of agony, he went to the bedroom and curled up in a fetal position. I kept praying for him in whispers and in my head, stroked his hair, tucked him in, and watched until he fell asleep in that position.

We love our Daddy! :)

We love our Daddy! 🙂

The next morning, I was so relieved to see that he’s okay. Praise God! 🙂 It was Sunday and we were going to celebrate my brother-in-law’s birthday. I was pretty excited to get last night’s incident out of my head. We were just beginning to eat lunch when Omar’s stomach started acting up again. It was the same pain and it was terrible to see him go through it again. This time, he readily agreed to see a doctor. Good thing there was Healthway in Alabang Town Center and he immediately went there. We finished our lunch quickly and followed him.

When I opened the emergency room door, I saw him in the same fetal position again, grimacing in pain. That’s tough to see when you’re so used to seeing your husband up and about. I’m used to being cared for because I’m the perennially sick member in the family. It was a blessing to have my in-laws with us to take care of Timmy while I attend to my ailing superhero. Finally, the doctor came and gave him and examined him. He was given pain relievers and was asked to have a urinalysis done. An hour later, we got the result with all the wrong things in it. He has calcium oxalates, red blood cells, and pus in his urine. Simply put, he has kidney stones. 😦

Kidney Stones

If you look it up in the web, having kidney stones is one of the most painful experiences any person could go through. That explained the inexplicable stomach pain. Omar’s not new to this. He already had a bout with calcium oxalate stones 10 years ago. He was drinking calcium supplements at night and it formed into stones. This incident is practically the same except that it’s not as painful as his first episode. At that rate it was not even equal to the previous attack! I can only how imagine how bad it was the first time, poor baby. 😦

Answered prayers

I didn’t like the result, not one bit. However, I’m grateful to God for answering our prayers by giving us accurate results. Despite his sickness, now we know how to manage it better. We can take steps that will lead him to a fast recovery. And what a quick recovery he had! After drinking his antibiotics for one week and some pain killers, his repeat test showed none of the previous elements! Sure there were times when he would tell me about certain discomfort he was feeling but it wasn’t that bothersome. Praise God for His quick healing! 🙂

We also saw an urologist so that we have a go-to specialist if in case it recurs again. The doctor told us to have more tests done to better manage his health. Those tests will show if he’s a stone former or if there are teeny tiny stones that were still not detected in the previous. This doctor is very thorough and despite his seeming pessimism on my husband’s health improvements, we understand that he wants to make sure that Omar receives the best medical care. He has seen far too many kidney transplants and kidney failures and he wants none of those to happen to my hubby. From that standpoint, I’m all for more tests and lifestyle change. 🙂

Love my boys!

Love my boys!

Psalm 120:1 says, “I call on the LORD in my distress, and he answers me.” God really held my hand throughout this ordeal. I really didn’t know what to pray for during those weeks except “please heal my husband.” It was a repeated cry from a wife’s heart and God faithfully answered. 🙂 During those moments of helplessness, God proved to be my only help. He is my refuge and source of strength. He showed me that as much as I love my husband, HE LOVES HIM MORE. He can take care of him and comfort him far more than I could. 🙂

Grateful for family :)

Grateful for family 🙂

Now, Omar’s back to his old self. No more pain, no more discomfort! He still needs to have those tests done but I am confident that it will turn out normal. J It’s good to see my best friend, my superhero looking invincible again. God has been so gracious to give him to us. Timmy and I are so blessed to have Omar as the leader of our home. He is more than what we could ask for. I know that there will be days when we will see him exposed to a different kryptonite and be vulnerable again. However, I also know that God, our real HERO, will come to our rescue. 🙂 He’s not flashy, He doesn’t come with a mask or a cape, He doesn’t even make headlines but HE NEVER FAILS. God’s track record is perfect and His love for His children is so great. That love alone is more than enough assurance that we can face anything as a family. God is not only love personified but also love in action. He answers our prayers out of love, delivers us because of His love, and sustains us with His unfailing love. 🙂

When the Heart Fails

Our family is no stranger to health challenges. For a barely three-year-old married couple, our health bouts can rival that of an old couple. From a complex pregnancy to our baby’s operation to his asthma attacks to my pneumonia confinement, these health hurdles had been nothing but a testament to God’s faithfulness and deliverance. By now, we should’ve figured out how God works. Then again, nothing can prepare you for what life throws at you.

Family love :)

Family love 🙂

A month ago, I experienced terrible chest pains. Being a patient with a high threshold for pain, I endured it for more than a week without saying a word. God was gracious to heal me but was also firm in convicting me to confess this to my husband Omar. One night, I told him everything and apologized for not telling it to him sooner. My husband felt sad and terrified because I could’ve had a heart attack during my silence. I felt worse because that was a stupid decision not to tell my husband what I was experiencing.

We then decided to see a cardiologist. We were given requests for an ECG and a chest x-ray. By then, the chest pains were gone. I saw my rheumatologist for a check up and was given an A for my good health. We were rejoicing and praising God for this news because it meant that my Lupus is inactive and being steroid-free is working for me!

A couple of weeks after, I started to notice the frequency of my shortness of breath. My palpitations were becoming more evident and small activities wore me down easily. We decided to have lab tests done—C3 to check Lupus activity, CBC, ECG, and chest x-ray. We had these done on a Monday. It’s important that I relate how that week unfolded for us.

On Wednesday, I had work and a presentation to deliver. During my presentation, I found myself catching my breath between sentences. Thankfully, I was able to finish it smoothly but I was so tired after. I was still at work when my husband sent me a text message saying that the results were out already. I checked it online and texted it to my Lupus doctor. She replied saying that it was okay no need to bring back the steroids but she added that I should see a cardio for the “septal wall ischemia” result of my ECG.

Being Google-dependent, I searched for the meaning of that phrase and found out that it meant that my heart was not getting enough oxygen. The next day, we went to the cardio my mom and sister recommended. He told us that it was not only “septal wall ischemia” but “anteroseptal wall ischemia,” meaning it was not only a wall but my entire heart is not getting enough oxygen. Simply put, it was bad news. He added that it was a precursor to a heart attack and I was given an emergency medicine to take if ever I experienced severe chest pain.

I was not given any medicine until I had undergone a battery of tests, which were all ordered to be done immediately. We had the 2D Echo done on Friday and the treadmill stress test on Saturday. I was scheduled to see my cardio again by Monday. With simply the emergency medicine in my wallet, I was like a walking time bomb. My husband couldn’t leave my side. When he had to go to the clinic to have my name listed, he had to lend the spare keys of our house to our neighbor in case I had a heart attack or extreme chest pain and I needed to be brought to the ER while he was away.

My boys :)

My boys 🙂

In our minds my heart was failing by the minute. Spiritually, our hearts were close to failing, too. It was a gruelling week full of unanswered questions and anxious waiting. One afternoon, my husband and I had a heart-to-heart talk (literally and figuratively) and we poured out all our fears. It broke my heart to hear how difficult it would be for the two of them if I’m gone. How hard it would be to explain to a two-year-old why mommy can’t be there when he cries out for her. How hard it would be for my husband to raise a toddler alone.

We surrendered all our fears and worries to the God whose heart never fails. One of the most important things we’ve learned from our past experiences is that our God has a steady loving heart that never falters. If there is one thing constant about God, it is HIS LOVE. His love for us moved Him to heal and deliver our family time and time again. This new ordeal is no different. We knew in our frail and failing hearts that we can only count on Him who loves us unconditionally.

My little angel :)

My little angel 🙂

We embraced the situation knowing that God already had the answers and He is in full control of our lives. I had peace knowing that our God is unchanging. The same God who has sustained me for 15 years with Lupus is the same God who will sustain me with this lifetime Ischemia. If 15 years is not enough as proof of His faithfulness then I don’t know what is. We went to the doctor confident in the fact that our God has already prepared the way before us.

Upon seeing my cardio, we were given the best news we could ever ask for. My 2D Echo was normal indicating no sign of Lupus activity in the heart. My stress test was normal, too! Yes, I still have Ischemia. It is a heart injury that does not heal. But God in His grace and mercy made it a non-threatening one. I was given maintenance medicine to address my palpitations and shortness of breath. This medicine will open the blood vessels in my heart and allow more oxygen to flow. The blocks are still there but they are manageable.

CrossHeart1

We let out the most audible sigh of relief upon hearing the results. We rejoiced and thanked God for His goodness and faithfulness. We knew that although we were concerned with my physical heart, God was more concerned with our spiritual hearts. He held our fragile hearts and enveloped it with his peace, assuring us all the time that He is sovereign. God did not allow our hearts to fail, He strengthened it even more. We are still in awe at how God delivered us from this ordeal.

I am grateful to God whose love knows no bounds. 🙂 I am grateful to my husband who supported me all throughout this trial. Being married to him is a daily expression of God’s grace and unfailing love. This experience brought us closer together and it made me fall in love with him even more. 🙂 I am grateful to my little boy who makes me laugh in the midst of pain. I am grateful to our family and friends who partnered with us in prayer. Above all, I am grateful to be alive. In those moments of waiting, God made me realize that He truly holds our lives in His hand and it is the best place to be in. 🙂

God'shand

That week, God comforted me through His Word in Psalm 16:

Psalm 16

Keep me safe, my God,
for in you I take refuge.

I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”
Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.

Lord, you alone are my portion and my cup;
you make my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.

Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
10 because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
11 You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.

ALL GLORY AND PRAISE TO OUR GOD WHOSE LOVE FOR US NEVER FAILS AND WHOSE MERCIES ARE INDEED NEW EVERY MORNING. 🙂

What You Need to Know About My Disease

Since May is Lupus Awareness Month, I feel compelled to share with you the basic facts you need to know about my disease. I’m speaking in behalf of my fellow patients and our families who want people to understand what this sickness is all about. When you’re perennially sick, it’s quite challenging to live a normal life. There are certain things you can’t do and there are crazy things inside of you that you can’t control. You also can’t expect people to understand you if you can’t make it to certain gatherings or when you have to back out or cancel at the last minute. It’s all part of the package so to speak.

I celebrated my 14th Lupus anniversary last May 10, which was recently declared as World Lupus Day! 🙂 I can’t believe that it’s been 14 long years already and here I am still surviving (even thriving!) by the grace of God. After everything I’ve been through, I never thought I’d make it this far. I’m still amazed at how God continues to heal and sustain me. 🙂 I’ve come to accept that this sickness will always be a part of my life—my own version of the apostle Paul’s “thorn in the flesh.” With acceptance, I’ve learned how to better care for myself and adjust to my limitations. I’ve also learned to appreciate the beauty in restraint and slowing down. 🙂

 

So as I try to raise awareness in my own little way, let me share with you some facts you need to know about Lupus:

Lupus is an autoimmune disease. It affects the immune system, making the body wage war against itself. It attacks different organs of the body specifically the skin, joints, kidneys, heart, brain, and lungs.

Lupus is difficult to diagnose. It mimics other diseases, making prognosis tricky. It takes an average of 4 different consultations before a patient is finally diagnosed with Lupus.

There are 11 criteria for Lupus diagnosis according to the American College of Rheumatology. If a patient has 4 or more of these symptoms then most likely he/she has Lupus. Just so you know, I got more than 4 when I was diagnosed. 🙂

  • Butterfly-shaped rash across cheeks and nose
  • Scaly disk-shaped rash on face, neck, ears, scalp, chest
  • Sunlight sensitivity
  • Mouth sores, tongue sores, inside nose sores
  • Arthritis pain in joints
  • Pain in chest and side when breathing or moving
  • Kidney problems
  • Neurologic problems
  • Blood problems such as anemia, low white cell count
  • Immune system malfunction
  • Antinuclear antibodies

During one of the major flares I had

Lupus is incurable but controllable. To this day, there’s still no cure for Lupus. However, the disease can be controlled through medications, close monitoring (i.e. regular check up and lab tests), and lifestyle change. Patients go through a series of flares and remissions in their lifetime.

Lupus is not contagious. It’s not transmitted through any form of contact. However, some studies show that Lupus can be genetic but this is still inconclusive. In our family, I’m the only one with the said disease.

There are different types of Lupus. Lupus is a diverse disease. There are 4 types of Lupus:

  • Systemic lupus erythematosus – affects joints and organs; this is what I have—the buffet one 🙂
  • Discoid lupus – affects the skin; famous singer Seal has this
  • Drug-induced lupus – develops after a drug reaction
  • Neonatal lupus – affects newborns but often transient; my baby was diagnosed with this when he was born 😦 my doctor advised me not to have him tested again until symptoms show

After a lumbar puncture

Lupus often targets women. 90% of Lupus patients are women. It occurs during childbearing years, ranging from 18 to 45 years old. Men and children are affected, too, but on a smaller scale.

The cause of Lupus is still unknown. There are researches continuously being done to determine what causes Lupus. Some theories include genetics and environmental factors.

Unlike other diseases that have prominent celebrities as ambassadors, Lupus has none of those. There are still a lot of people who are not aware that such a disease even exists. I hope that someday we’ll have someone like Michael J. Fox who will rally for Lupus. 🙂 I’m thankful and blessed to still be a Lupus warrior. We don’t call ourselves survivors because it doesn’t go away. Having Lupus is like being engaged in a battle wherein sometimes your body begins a war with itself or declares a truce.

My life with Lupus is filled with rich experiences. I’ve known God in a deeper way through it. I’ve seen how this disease brought my family closer to each other. My husband first saw me when I was sharing my bout with Lupus in a church event. I experienced a miracle when I gave birth to my son despite having this disease. It has been an unpredictable and challenging life but nonetheless beautiful. I can only give credit to God for all these. It has been a wild ride but I wouldn’t have it any other way. 🙂

Patient-Doctor Relationship: A Trust Issue

I visited my doctor the other day for my routine check up. As I entered her clinic, I was received with a familiar smile that made me feel at ease. It’s like I’m seeing a family member again. That’s what TRUST does to you. It makes you comfortable and safe with the person you trust.

Being under her care for 10 years, I’ve learned to trust her and the decisions she makes regarding my health. She also trusts me in a way that she expects me to follow her instructions—taking the right doses of medicine, having my laboratory tests done, showing up for follow-up check up, eating healthy, avoiding the sun, and the list goes on. It’s not easy taking care of a Lupus patient more so treating it. Just ask my husband and my mom. 🙂 It’s a complicated illness because it mimics other diseases. Very cunning, I must say. Just when you thought you’re healthy, your immune system attacks your organs. One book said that Lupus is simply “the body against itself”. In my own interpretation, my immune system is simply schizophrenic. It cannot distinguish reality from fantasy. The reality being that it should protect me instead of the fantasy that it should destroy me. With a complex illness like that, I have no choice but to trust the expertise of my doctor. She’s not perfect though. She made mistakes and some decisions that were not supposed to be done. But these mistakes made her even better in her management of my illness as the years go by.

As I am writing this, I have a couple of friends having trust issues with their doctors. One is actually a mom of a co-patient. Her daughter’s lab results are normal but she’s experiencing aches and pains. She’s questioning our doctor’s ability to diagnose. My other friend is facing a decision if she should have her leg amputated or not after having a major car accident. The doctor said that it should be done as soon as possible but as of the moment she’s still thinking about it.

I’ve always believed that our doctors are assigned by divine appointment. God equipped them to attend to our needs and bring healing through their competency in the field of medicine. I must say though that I didn’t have the best experience with doctors all the time. In my recent confinement last December, the doctor assigned to me was steroid happy. Meaning, she wanted to give me high doses of steroids immediately. It would’ve been okay if I wasn’t pregnant at that time. My real doctor was not affiliated to the hospital I was in so I was referred to a new one. Do I still think that it was divine appointment that I had that new doctor? Yes. Her aggressiveness in treating me made us consult another specialist who attended to my needs and balanced her impulsive prescriptions. That specialist even monitored my kidney after the operation. If not for her, we wouldn’t know that my real doctor has a colleague in the said hospital. I was able to transfer to his care with her permission. At the end of the day, things still fell in their proper places. God was still in full control of my situation.

I think the main issue about trust is the object of our trust. We can easily give trust but the question is who do we give it to? Entrusting your health to a stranger can be tough. I understand why the mom of my co-patient is having difficulty trusting our doctor. It’s her daughter that’s at stake and not some bystander. I understand my friend taking her time to mull things over. It’s her leg that’s at stake and not somebody else’s. If the object of our trust is someone who has a record of 100% success rate then trusting that person would be a piece of cake. But if we look at the limitations of our doctors then a lot of doubts will cloud our judgment.

We may come from different belief systems but in my personal experience TRUSTING GOD has been the best decision I made most especially regarding my health. Among all the areas in my life, my health has been the most unpredictable and life threatening. This is the reason why I needed to trust someone who is immovable, strong, unchanging, secure, and by all means perfect. That person is God and no one else. As I look back the past 13 years of my journey with Lupus, with 4 major relapses and minor ones in between, there were only two things that were constant—the imperfect me and my perfect God. He was and still is the sovereign, all-knowing Healer who faithfully sustains me. He gives me peace when doubts start looming in. He gives me strength as I undergo treatments. He sustains me while I’m under remission. He gives me courage to trust my doctors. He is the rock I lean on. He is the steadfast God that I trust completely.

A patient-doctor relationship is most certainly a trust issue. I may be a forever patient with an incurable disease but my relationship with my Doctor is one that is founded on trust that gets stronger as we face this journey together until such time that I am a patient no more. 🙂