Living with Scleroderma

this is nothing but a curve ball

Walk for Cure Video by Aaron and Elle

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Waiting here for YOU by Passion

Here’s another song that touched my heart last Sunday at church
“Waiting here for You” by Passion.

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Healer by Hillsongs

My sister in law mentioned to me that she thought of me when she heard this song…
Healer by Hillsongs

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Walk for Cure Team

My husband is super sweet! He created a Facebook event and a Team Page for the Walk for Cure.

If you want to come join to Walk, you can register HERE and let them know you’re with Team Kristine.

To support monetarily, you can donate HERE

Hope to see you there!

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Walk for Cure 2012

Come Join and Support!
Scleroderma Foundation So Cal Chapter presents
“Walk for Cure 2012”
June 3rd, 2012 @ La Mirada National Park

Walk For Cure June 3, 2012

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Diffuse Systemic Sclerosis

Scleroderma affects individuals in a variety of ways. There are a few different types of Scleroderma. The severity just differs depending on the type you have. My diagnosis was Diffuse Systemic Scleroderma.

Diffuse Scleroderma

“Diffuse scleroderma is typically characterized by an early internal inflammatory phase. Also, unlike limited scleroderma, the onset of symptoms that significantly impact quality of life can be rapid and severe. In most cases of diffuse scleroderma, there is extensive skin fibrosis covering large parts of the body and extremities. Even cases without significant skin involvement can be life-threatening, depending on the type and magnitude of organ damage.

Problems of the digestive tract can make eating, nutrient absorption and elimination difficult. The most serious complications of diffuse scleroderma involve the kidneys, lungs and heart and may include renal failure, pulmonary arterial hypertension (PAH) and the potential for heart failure. PAH is the leading cause of death among scleroderma patients.

People with diffuse scleroderma are often chronically tired, have a diminished appetite, show weight loss, and suffer from joint swelling and pain. Changes in the skin can include swelling, tightening and chronic itchiness.

It is not uncommon for people with diffuse scleroderma to enter a phase where disease progression stabilizes for varying lengths of time. This stabilizing phase often begins within three to five years after onset and can last for varying amounts of time.

As with all forms of the disease, there is no cure for diffuse scleroderma. Although the disease may continue to lie dormant for several years, there can be no certainty as to whether symptoms will improve, remain stagnate or worsen.

Early diagnosis, symptomatic treatment and frequent visits to a physician for monitoring are critically important for diffuse scleroderma patients.”

Excerpt from Scleroderma Research Foundation

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How are you?

Nowadays, I often hear the question, “How are you?”

And I do appreciate that. Even people I don’t know too well or don’t see me as much constantly check up on me. You guys make me feel very special! Thank you!

Ever since getting sick, the question “How are you?” all of a sudden has taken a new meaning.  I just can’t always say, “I’m fine, thanks!”  Because there are days when I’m just getting out of a 10-20 minute coughing fit 5 minutes ago and my head is still lightheaded from all the coughing.  Of course they didn’t see or hear my attack all the way from the other side of the office when it happened.

On the other hand, I don’t want to just say, “Actually, not too good, I just got out of a coughing attack again…” And then I’ll get responses like, “Oh no! Sorry to hear that!” Or “Still having problems with your asthma/allergies?” Not everyone knows I’m actually going through something more than asthma/allergies.  And I can’t tell every person I’m going across in the hallway or restroom that I have Scleroderma.  Because once I bring it up, I have to actually stop them or myself to be able to explain what it is (even the cliff notes version of it), for them to have some sort of understanding of why I’m this way.

But I want to answer the “How are you?” question without having or to seem like I’m asking for pity or trying to have a long conversation when some people just want me to really just be okay.

I really can’t help it.  Some days will be better than others.  But, I’ve learned that God is faithful.  According to 1 Thessalonians 5:18, “Give thanks in all circumstances, because this is God’s will for you in Christ Jesus.”

So how should I answer simple yet complicated question?  Hmmmmm…

Well, if I’m doing well that day, I’ll say, “I’m great praise God”
If not, I won’t lie to you and say I’m fine, but instead I’ll say, “I’m blessed! Because it really doesn’t matter that I’m feeling really bad, because I still am breathing and that is something to be grateful for.

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Welcome to My Scleroderma Blog

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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