Living with Scleroderma

this is nothing but a curve ball

I am STRONG!

There are times when I watch shows that make me miss all the times when I was having fun dancing, singing, shopping and going out with my husband and friends.

Then there are days like today, when I wake up from sleeping for 10 hours and still be exhausted. I almost fainted in the shower.  I started getting ready for work, but I had to sit down and then finally lied back down because I just couldn’t stay up anymore. I don’t even have enough energy to make it to work today.

It made me think.  I miss just being able to get my kids ready for school and myself ready for work without feeling so tired immediately.  I miss not having my cough attacks. I miss not losing breath or coughing when I even walk to the bathroom.  I miss enjoying sleep without any coughing, pain, numbness in my hands and arms and tingling all over my body.  I miss playing with my children for a long time because mommy gets tired easy.  I miss being able to open certain packages for my kids or being able to fix my daughter’s hair with no problem because my hands don’t work the same way anymore.  I miss not feeling like the way I do.

In the shower, I kept saying to myself, “I am STRONG, I am STRONG!” For a moment I felt like I failed.  How can I claim to be strong and not even stay up?  Then I realized something.

Physically right now, I maybe weak, but not at heart.  My heart is strong because I’m blessed!

I’m still blessed.

I thank God for blessing me with an amazing husband that always takes care of everything that I can’t .   I thank God for my children, who constantly makes me happy and reminds me of how blessed I am no matter what. I thank God for my parents who constantly prays for me and lets me know they love me.  I thank God for my in laws who takes care of our children and transports them where they need to be when we can’t. I thank God for my supportive coworkers and bosses who are tolerant of me, yet still treats me the same way to provide me some normalcy.  I thank God for an opportunity to reconnect with old friends. I thank God for friends and family who really care. I thank God for his provisions. I thank God for a great group of medical professionals taking care of me. I thank God for being able to learn and grow from situations that I cannot control.

What can I say? In every dark cloud, there is always a silver lining. Be BLESSED!

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He Never Sleeps Video

He Never Sleeps (by Don Moen)

This is a video my dad sent me.  It made me smile! =)

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Lung Scan Update and Cytoxan #11

Cytoxan #11

The 2nd lung test consisted of inhaling radioactive gas and getting scanned for about 30-40 minutes.

Lung test #2 

The good news is that my doctor says that my results were normal, yay!

Last week, I just had my cytoxan treatment #11

cytoxan #11

I’m having on and off nausea and fatigue.  At least its not as bad as treatment #10.  In regards to my hair falling off, I’ve been extra careful with my hair.  I haven’t noticed an increase in falling out, just about the same, whew!

I guess the smaller dose of chemo is making a bit of difference.

The other day, my husband mentioned that we’re taking a break co’z I’m having 3 infusions, three weeks in a row.  The first one will be the Rituximab #1, the second will be Cytoxan #12 and the last one is Rituximab #2.

So, yes, I’m actually looking forward to a whole week of no doctor’s appointments, no tests, no hospitals before more back to back visits, each one between 6-8 hours long each.  

During this time, I’ll be celebrating every single day with my amazing family, co’z each day with them is a better day!

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Feeling Sicky during the Holidays

This Christmas is the first time I’ve felt really sick during the holidays.

We had company over and I had to keep excusing myself to close my eyes co’z I had a headache that wouldn’t go away. As soon as i get to our bed to lie down, my whole body starts aching and I found it extremely difficult to move.

The cold weather isn’t helping either. My Raynauds are becoming more frequent and I’m starting to feel pain in my hands each time. My Rheumatologist prescribed Nitro Glycerin to hopefully give relief from my symptoms. The good news is that it does work. Unfortunately my fingers turning purple happen more often than I’m allowed to use the medication. For the meantime, I’m trying to get used to working with gloves at work, or else, I’ll get nothing accomplished.

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I had a lung scan today.I was told ahead of time that there might be a part two of the exam tomorrow. That’s if they see abnormalities like blood clots in my lungs. I felt good during the 40 minute scan and I was already preparing myself to go back to work tomorrow when I was told I need to return to the hospital again but this time for a breathing test.

I have to admit. I’m a little disappointed, upset and anxious. I was looking forward to a normal scan result. But I guess the silver lining is that the sooner they find out what else is wrong with me, the sooner they can fix it.

One day at a time….I’m still here to spend time with the ones I love and that’s all that matters. =)

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Chemo #10

Chemotherapy #10 was fine on the actual day of treatment. I figured I was getting used to the medication. I was thinking I’ll have my typical tiredness and fatigue. And I was already expecting a slight nausea.

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Unfortunately, I didn’t get my usual 2 days of fatigue, and a bit of nausea. Instead, I was tired almost everyday for 2 weeks with nausea and vomiting the whole time.

My doctor said that the cytoxan is probably kicking in. They’re happy that the medicine is working in slowing down the progression of Scleroderma in my lungs, however they are concerned about my side effects as well.

My hair also started falling out. I wasn’t having this bad of side effects until this last chemo session so I freaked out a bit. I’m very blessed that everyone around me has been such a great support system. My family and friends keep reminding me that it’s almost over and my hair will grow back anyway =)

For my last 2 cytoxan treatments, my doctor told me that they will lessen the dose enough to hopefully decrease the my side effects. I’m crossing my fingers for this to work.

It’s going to be a busy month. I have a lung scan tomorrow, possibly another one the day after. My Chemo #11 is next week. Then, I have my 1st Rituximab infusion scheduled the following week. If I don’t get an allergic reaction to Rituximab, I’ll get another infusion 2 weeks later.

I’ll keep you guys posted! Thanks for all the thoughts and prayers!

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Hope Fight Believe

Last Dec 23rd, hubby and I celebrated our 35th birthday together in an event “Hope Fight Believe!”

It was our intention to raise awareness for Scleroderma and thank people for all the support we’ve been getting for the last few months.

We had special guests performers including Dawn Cantwell, Back on Track, Hope Carr and Joe Monti (from the Magic Castle).

Dr Daniel Furst came and spoke about Scleroderma to help raise awareness to our guests.

The Chronically Awesome Foundation came to show us support.

We also had a silent auction of some items generously donated by some sponsors including JanieXY and HYDRO Skateboards.

I was able to auction off come of my paintings and some of my printed art work. The response was overwhelming.

It was a busy time due to the holiday season, but almost a hundred people came to support us. We are so humbled by everyone’s time, effort and generosity.

Visit http://www.facebook.com/teamkristinefund to keep posted for other events =)

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