BY LEI FAJARDO
THE sun is up! You gently opened your eyes with a smile, thankful for a new day that God has blessed you. Just when you are about to get up, you’ll realize you have sudden pain in your back, you can’t move your legs, blurring vision, and worst, it’s been working on me for years – unexplained headache. In my mind, I have planned the things I wanted to accomplish for the day, but it will all be in my mind.
I was diagnosed with a rare inflammatory autoimmune disorder called Mixed Connective Tissue Disease (MCTD), a disease that overlaps with several other rheumatic conditions such as lupus, scleroderma, polymyositis, and rheumatoid arthritis. Those episodes of pains all over my body and feelings of restlessness I mentioned earlier are signs of MCTD flare that didn’t sink in on me at first. I know I have an autoimmune disease, but I never thought how serious it would be in the future.
Pregnancy with MCTD
I was 30 when I got married, and I was already 34 when I got pregnant with my eldest son. Thank God! For someone who has an autoimmune disorder, it would be very difficult to conceive. I have been praying so hard that God will bless us even with just a child, and He did, not just one but two handsome boys.
My pregnancy was high risk so, I immediately quit my job and focused on my baby. I was a very diligent patient who comes into the doctor’s clinic every week for my regular check-up, not one doctor but four given my rare disease. I would even have an ultrasound every two weeks to closely monitor the growth of my baby. It was tough, tiring, and expensive yet an astonishing journey. I delivered them both in cesarean operation, and seeing them being born normal and healthy is like receiving the best trophy of my life.
With my eldest son, who is very close to me and would always check on me when I am sick. 
This photo was taken after an early morning walk with my son to catch the sunlight’s energy and power of positivity. 
With my youngest son when he was four months old
Flare-up
Months after I gave birth to my youngest, I started feeling the symptoms – worst and more exhausting than before. According to studies, MCTD flares include stress and emotional distress following a pregnancy. That’s when my life became a mess!
I was like a zombie; I couldn’t do things properly. I couldn’t think well. I couldn’t even take care of my three-month-old baby, and I was only grateful to my sister at that time, who took full responsibility of him. It’s like my mind was frozen, and all I could ever think is how to escape the feeling of being unwell. I looked okay outside, but I am physically, emotionally, and mentally tortured inside.
Self-denial
They say we can train our mind to control our behavior, but in my case, no matter how hard I try, I failed to connect the right message to my brain, or maybe I’m in self-denial. The pain in my body kept controlling me to be scared of my life. I couldn’t accept it to the point that I developed anxiety and depression and had several episodes of panic attacks in the middle of the night. I couldn’t drive alone. I couldn’t stay long inside the mall. I couldn’t even wash my face in the bathroom. I was always afraid of doing things alone. I even enrolled myself to a behavioral expert to help me get back to my normal life.
Treatment
One factor why acceptance is hard for me is because I am aware that MCTD has no cure, and I will be dealing with it for the rest of my life. MCTD symptom management depends highly on which symptoms are present – the reason why I have several physicians of different specialties to check with from time to time. I am thankful to my rheumatologist (autoimmune disorder specialist), who helped me recover step by step. Our goal was to control the disease from further causing damage or complications. To ease my panic attacks, I underwent a magnetic resonance imaging scan to check the possible causes of my frequent headaches, and I was lucky to have normal results.
Lifestyle change
Along the process of acceptance is learning about the behavior of MCTD. I made a journal of my triggering factors, the frequency of my body pains and headaches, the food that I eat, and the things that stress me out. I learned that the best way to healing is a lifestyle change. If you live well and eat well, you treat yourself well. Following my doctor’s treatment plan is also the key, balanced with good practices to keep my body healthy and strong. Here are the lifestyle changes I made to avoid flare-ups:
1. Eat a healthy diet – fish, fruits, and vegetables. Eat less meat, especially red meat. To cut my carbs, I choose brown rice. I’m a bread eater so, it was a challenge for me to refrain from eating them. The key is discipline.
2. Drink plenty of water a day (eight to 12 glasses) to keep the bones strong and healthy, especially if you are taking steroidal drugs.
3. Exercise two to three times a week. A 30-minute walk exercise will stretch out the muscles in your body.
4. Have enough sleep. Completing the eight hours of sleep is majestic.
5. When at work, rest when your body calls for it to prevent over-fatigue.
6. The culprit of all kinds of disease – stress – avoiding it is like winning a jackpot in the lotto.
7. Avoid smoking or too much alcohol.
8. The essential part of my recovering process is studying the Bible, drawing strength, and inspiration from God’s promise of everlasting life.
Support group
Living with this unpredictable disease is very much worrying. The family should have a deep knowledge of the disease to understand the patient. Likewise, the family is the first support group for someone who has this rare disease. In my experience of the limitations that MCTD has done to me, like taking care of my kids, it struck guilt in my heart, and I have nothing to do about it. But the love, patience, and support of my husband and everyone in the family lifted me up to gradually recover. Talking to someone who experienced similar symptoms helped me feel less alone and helped me relieve some of the stress, too.
Today, still with the guidance of my doctors, with the love and support of my family, I’m drawing strength from my kids and trust in God, hoping that I would be able to endure all these things. I decided to share my story to let everyone know or maybe someone experiencing the same, that you are not alone. Be strong and courageous! Life is good and let’s live well./PN
