Living with Scleroderma

this is nothing but a curve ball

Welcome to My Scleroderma Blog

on May 10, 2012

Welcome to our fight against SCLERODERMA!

I was diagnosed with Scleroderma (Diffuse Systemic Sclerosis) on March 22, 2012

Systemic Sclerosis is defined as a chronic connective tissue disease that causes the skin and tissues of the body to harden and get swollen. It can cause damage to the lungs, heart, kidneys, digestive tract, muscles and joints.

Before this diagnosis, my symptoms have been constant coughing for 4 years and Raynauds. Raynauds Phenomenon is a condition that when exposed to cold temperatures, the fingers and toes result in discoloration.

When I first started coughing, I was pregnant with my daughter in 2007, so they really couldn’t do anything in fear of any procedure possibly hurting the baby. After my daughter was born, my primary care physician first thought I only had asthma. Then, I started seeing an Allergist as well, but my coughing never stopped.

I had a bad December last year and then a bad January. When February came, it just got worst. Walking for a long time and going up a flight of stairs was quite a challenge. Everything made me cough. I would have coughing episodes anytime from waking up to trying to sleep at night. My chest and back hurt so much from coughing so hard. I’m often very exhausted and lightheaded after each episode.

In addition, my legs, hands and face always seem to be swollen. I tried to stay away from salt, but it never just went away. I was also constantly tired and feeling sore all over my body.

Finally, my hubby requested a chest x-ray and they saw some abnormalities with my x-ray. At first, they thought I had walking pneumonia, so I went on antibiotics for a while.

On my follow up visit, I had another x-ray done and there had been no improvements since the antibiotics, so I was referred to a Pulmonary Specialist. She requested a CT scan of my chest, a blood test and a Pulmonary test.

scleroderma

Then, the Pulmonary Specialist referred me to a Rheumatologist who then requested for more blood test looking for specific autoimmune white blood cells.

scleroderma

My CT scan showed inflammation and scarring of my lungs. The blood test showed that I have a high number of white blood cells fighting against my own body causing the inflammation. The Pulmonary test showed that I only have 69% lung capacity remaining.

scleroderma

I was prescribed to undergo chemotherapy (using CYTOXAN) to aggressively treat my scleroderma. I was scheduled 6 treatments, once a month and the doctor will review my condition my progression.

My first chemotherapy was on April 2nd. Everyone told me I might feel some fatigue and nausea. At the same time, I was also told that I may not feel too bad since the first treatment was a smaller dose than normal. Actually, it wasn’t so bad.

First day of chemo

I had slight nausea and fatigue, but aside from that, I stopped coughing for 2 weeks. It was such a relief that I actually forgot I was sick. All of a sudden, it seemed like the medicine wore off because my symptoms came back after the 2nd week. I was coughing all the time, my back and my chest was hurting. It was very difficult to breathe… again.

On May 2nd, I received my 2nd chemotherapy. Considering this was supposed to be a stronger dose, I was actually looking forward to feeling better right after the treatment. Unfortunately, I was only symptom free for about three days and then the coughing started again.

scleroderma

I told my doctor and she requested for another chest x-ray. The results showed a progression of my scleroderma. She found more scarring on my lungs. I’m on Prednisone again to help me control my coughing and difficulty of breathing until my Chemo starts working in my body.

Today, I had an ECG (Echocardiogram) to check if my heart is doing okay. I have another doctor’s appointment next week and hopefully she can give me a reading to tell me how my test today went.

For now, I’m still dealing with coughing and a lot of fatigue, but I’m hopeful. And I’m thankful for my amazing family and friends who love and support us.

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13 responses to “Welcome to My Scleroderma Blog

  1. Jessica says:

    I feel your pain! I was diagnosed with this disease 2 years ago and it’s not fun! Email me if you ever need somebody to talk to. šŸ™‚

  2. Tita Carol Sadorra says:

    You are always in our thoughts and prayers; We have a miracle working God and nothing is impossible with HIM. Continue to be strong in the Lord. Lots of us are praying for you. Take care and love you. Tita Carol Sadorra and family.

    • toddlertimes says:

      Tita Carol, Thank you for the Love, Support and Prayers! We are humbled by God’s Grace in our our lives. We are blessed by you and your family. Again, we thank you. =)

  3. Joseph & Erma Ramientos says:

    Your Tita Emy & I were shocked to hear about your situation…from Bro. Jing. We were texting each other while driving. This morning, while reading your story, I was grieving and crying as I feel both of you in me. But, at the end of your story, I saw a couple of very uplifting pictures…

    Sis. Christine & Bro. Jing, your smiles summed it all up and it really blessed my heart with joy and assurance. As the children’s chorus have put it so well, “With Christ in my vessel, I can smile at the storm.” I also remembered the words of the Master, “Ride in the boat, we’re going to the other side.” They encountered a storm and Jesus was asleep. The disciples panicked. But Jesus said, “Peace, be still!” He brought them to the other side.

    My ina-anak, the Lord Himself will bring you to the other side. This is just but a storm you you, both, can weather. And the Master will make sure that His Name will be glorified in you and through you.

    Healing, in its completeness and wholeness is underway as we all (collectively) continue to pray for a great miracle! The Bible taught this and declared this, your Grandma (Pastora Virgie Cruz) preached this, we continue to declare and believe this, too. God has sent His Words and you sickness is healed, in the process of healing and will be healed.

    See you soon!

    We love you all,
    PASTOR JOE & SIS. ERMA
    w/ Dor & Josh

  4. mary says:

    my name is mary and i was told i had systemic scleroderma in feb 2012 i am taking the cytoxan this will be my second round the end of this month it is good to read your post it makes me stronger seeing some one like you in high hopes thank you

  5. Lori says:

    Hi, I hope that you are doing a lot better. I am seeing a rheumatologist for a possible scleroderma. diagnosis. Some of the bloodwork is mildly positive. Constant cough and throat dryness Cough is so aggressive that I sometimes throw up. I have difficulty eating except for soft foods.Have had reflux for years. I have mild lupus, but the weird thing is that I have no joint aches during this bad time. Had a barium swallow and chest x-ray which were normal. I have asthma, mild adult-onset, diagnosed two years ago. I feel so scared, not only about the illness, as I have been down the connective=tissue disease road before, but the not knowing. I am still able to carry out my day to day activities, not too fatigued, so that is a blessing. The sad part for me is that I feel I’m just not myself anymore. Even with the mild lupus, I experienced a lot of pain, but I felt like I was a person will a chronic illness, but still healthy and myself, but now I don’t feel that way. I feel I’m entering a new land and a frightening new stage of my life. I am so blessed with wonderful friends, a wonderful brother. but still frightened , although blessed. I have older parents who have some health issue, but are doing fiarly well. Thank you for your time, and I hope you are doing well. Thank you, Lori

  6. Alison Jean says:

    Hi there! I was going through the internet to look for some blogs about scleroderma and I found this šŸ™‚ My sister is diagnosed with systemic scleroderma when she was 18 years old. It was very tough journey to know that at her teenage years where she is preparing herself to be a real lady and this happened. My sister had undergone a lot of treatment which includes different kinds of expensive IV infusions,a lot of pain relievers, laboratories and many more. Her life was extended but the battle is so hard. She survived for 7years but God whispered to her and her long battle was over. She is just an amazing sister!

    To the blooger : Be strong!! Enjoy your life and never lose faith! For only God knows how our life will be.

    • kcmunda says:

      Sorry to hear about your sister. Yes, I agree with you, only God knows. Thank you for blessing me with your encouragement

  7. Kimberly says:

    I am starting an IV drip on Monday for cytoxan I’m really worried and scared I don’t want to lose my hair does it fall out in clumps ??My doctors said this is the last resort for me due to my lungs I have 40% lung capacity have been getting worse pretty fast I had lupus since I was 15 then in 1999 they said in was scleroderma because of the damage to my lungs I’m 42 yrs old now and just want to be around for my family for a long time.

    • kcmunda says:

      Hi Kimberly! This is my second year taking cytoxan. Last year, I barely noticed any hair loss. I will be having my 4th or 5th treatment this year and still no hair loss really. They say everyone’s different. I hope you the best. I didn’t feel a lot of nausea, mostly tiredness. And I notice it help my coughing. I’m at 32% lung capacity right now so anything helps. Hope this helps šŸ™‚

    • lori says:

      Hi Kimberly, I wish you the best of luck. Try, in whatever moments you can, to be hopeful. It’s just as rational to be hopeful as unhopeful and terriied. I am trying to take my own advice, with some success. I took a course in mindfulness which is a type of meditation. It helped!

  8. Hi Tin,

    Keep the “FAITH”, I have seen miracles and I will keep praying that “HE” touch you and heal you.

    Love Always,

    Ninong Lino

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