Living with Scleroderma

this is nothing but a curve ball

Chemo # 5

on July 16, 2014

Hello! Greetings from my cytoxan treatment room here in Kaiser at Sunset!

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Sorry I haven’t posted for a while. It’s been super busy. Our dear boy turned 9 and we’ve been spending a lot of time with family and friends. I’ve also been feeling terrible on and off. Today, I’m feeling good considering I woke up early for today’s treatment and I’m starting to feel super tired.

So let me catch you guys up with our little crazy last few weeks…

First of all, thank you, thank you, thank you for all the love, support, prayers and encouragement that I’ve received since the CBS segment went on.
CBS June 22,2014

I am humbled and blessed by each one of you. Thank you for taking the time to reach out to me, to reconnect , make friends, and share your stories, encourage me and ask questions. I am happy to be a part of spreading the awareness for scleroderma 🙂

We’ve participated in 2 walks last June. It’s always a new experience each time. Thank you to our friends and loved ones that came out to support.

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The hubby and I were also privileged to attend a golf tournament that was a fundraiser for the Scleroderma foundation. We donated some of my prints for the silent auction.

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I’ve also met more people with scleroderma lately and I feel great knowing that people understand what I’m going through. I haven’t attended a support group yet but I think I’ve built enough courage to attend one soon, yay!

Now let’s give you an update about my health. My lung capacity is down to 32%. I was coughing so hard a few times that I was blacking out a few seconds each time. My rheumatologist got worried and talked to my pulmonary doctor about possibly getting into the lung transplant waiting list.

They want me to drop to 30% BMI by my next appointment on August 27. As of now I need 13 more pounds to go, eeeek!

I’m still coughing but I’m learning to pace myself. I try not to exhaust too much energy. I always have my oxygen around me and I use it more often now when I’m starting to lose breath.

I’ve been keeping myself busy. I still go to work, enjoying the company of people who support me and see me everyday as just Kristine 🙂

At work, I’ve been very active in improving team spirit and building strong team relationships within my group with the help of my manager and mentors.

With the trust of my higher management, they have allowed for me to come up with creative solutions to everyday challenges. I love my job!

And you wouldn’t believe what I do for my job if you asked, lol

Outside of work, I’ve been trying to explore my artistic side a lot more, along side with my two amazing children. Thank you hubby for being our enabler 🙂

Ok now for not so fun details about me…
The skin on my face is starting to lose pigmentation. Hypo pigmentation due to the hardening of the skin with my diffuse scleroderma.

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My skin on my hands and feet are so dry and I notice them darker than the rest of my body.

I get tired easily still, so I’m normally sitting down a lot. And when I’m home, always lying down.

I still have fibromyalgia that is very annoying especially at night. It hurts on the side of my knees the most making it difficult to sleep. My fibromyalgia has been aggravated by being upset. It’s amazing how sometimes when people can’t understand you, the only way to deal with it is by trying to understand them.

Having scleroderma has thought me a lot about living everyday making the most of it, loving people you care about as much as you can, appreciating every thing no matter how small they are, staying strong not for anyone else but myself first, and keeping my faith in God stronger everyday.

I thank God for constantly giving me ideas on things I can do. I’m grateful that I feel even braver to take on new things than I did before.

I’m blessed.

And I declare blessing to each one of you as well! Have a happy day!

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