Living with Scleroderma

this is nothing but a curve ball

Chemo # 5

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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My Awesome Glasses

After the news story aired I’ve been asked where I got my oxygen glasses. They are from a company called Oxy-View, based in Engelwood, Colorado. We had to order them online since they were not available at our optometrist. My husband actually surprised me with them on Valentines day, sneaking behind my back and talking to my optometrist to get the measurements of my lenses and consult with Theresa from Oxy-View to get the right ones. He made sure they had Transition lenses so they turn into sunglasses as well. And I have to thank all of you who bought my artwork because the money raised from the sales paid for the frames and lenses. They have been a life changer. I can use them at work and no one even notices I’m on oxygen. I don’t have a cannula (oxygen tube) covering my face when I have conversations with people. It is definitely worth the investment. Unfortunately it’s not covered by insurance yet but hopefully it would be for others that need it. Please check out their website: http://www.oxyview.com and consult your physician, optometrist, and the wonderful people at oxy-view to get the right one for you.
oxyview

oxyview kristine

 

-KCM

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News Coverage

My story on the news.

 

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Follow up from my May 3rd post

Remember about me feeling terrible from my May 3rd post? Well, guess what happened?
At 4am on May 5th, I woke up with chills. I texted hubby to come home (he was working a graveyard shift that night). I checked my temp and it was 106 degrees. He rushed home to take me to the ER. It was one crazy morning!
I ended up having an infection. They gave me 2 bags of hydration and an iv of antibiotics. I was sent home later that day. The antibiotics that was prescribed to me also worked really well. I felt a lot better by that evening-whew!
Cytoxan #3 went fine. I felt a great deal of pain as my iv was getting set up. I toughed it out and lasted my 6 hours.
So far not much nausea and no significant hair loss yet. I have however noticed my taste buds acting funny. I can no longer taste soda. At least that’s a good way to end my diet coke addiction.
I’m still coughing a lot which has been taking so much out of me. I manage my cough by not exerting too much or walking or working too hard, but sometimes these lungs of mine are just too sensitive, lol.
Also, getting ready in the morning is so exhausting. It’s becoming a challenge to dry and brush my hair because my arms get tired easily.
And about my friend fibromyalgia.. My fibromyalgia has been on overdrive in the last few days, especially at night. I normally have a very high tolerance for pain but even I couldn’t ignore this particular one. I would end up crying till I fall asleep because nothing helps with the pain.
But I’m ok. It’s just pain, I can deal with it. I’m still smiling, still being productive and happy.
We went to UCLA last Tuesday. My doctor said that my skin score went down meaning my skin got softer. He’s hoping the same for my lungs.
I wonder how my results always show the opposite if how I feel, cause I should be better but I’m coughing so much. Well, I have a pulmonary function test next week and I’ll find out when my current diffusion rate is.
I told my doctor about my crazy hot flashes and brain fog. The brain fog is so bad that I forgot how to do certain parts of my job and I’m constantly forgetting the words I wanted to say. He thinks I’m over medicated and decided to lower my next dose if chemo, fun! Lol
May was super busy with work and getting sick and all, but being busy has been a good distraction from feeling bad.
By the way, the walk is next week… Come walk with us at La Mirada Park on June 8 if you’re not busy, I’d love to see you.

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Team Kristine Promo Video

It’s that time of the year again when we walk to support the Scleroderma Foundation. They have been great at providing patient support, research funds, and caregiver information.

 

please go to: http://www.scleroderma.org/goto/teamkristine to join or donate.

 

Thank you!

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It’s been a tough week

Even though most of my symptoms from the chemo was pretty much nausea in the first few days, I started feeling a lot of fatigue. Not that waking up in the middle of the night 3-4 times from coughing was helping either.
So during the last week, I’m always tired, coughing and having a hard time to breathe. My body has been hurting so much with my arms and legs being swollen. The pain was getting so unbearable that I start crying at night because no pain medication was helping. Every part of my body that gets touched or pressed on hurts so bad. It’s so exhausting and painful to be me.
During the last week, my nose has been bleeding at least once a day. I understand, the Weather is hot, but sometimes my nose bleeds even when I’m cold. Last night, my nose bled for about an hour. Hubby was so worried that he wanted to take me to the emergency room. Me on the other hand is so used to getting nosebleeds that I just waited until it finally stopped. It was no fun.
With everything I’ve been going through, my fibromyalgia is acting up. My legs, arms and back get so stiff and painful several times a day. I’m trying to make sure to be on top of my meds. But nothing seems to work.
During the last few days, my bladder’s been acting funny. I always feel like I need to use the restroom, but nothing comes out and it’s very painful. I looked up what it could be and I found out it’s IC interstitial cystitis. It’s very common with scleroderma. It’s when your bladder gets swollen and it sort of makes your bladder smaller making you want to use the restroom more often. I also read that IC can be triggered by fibromyalgia which would make sense because my fibro has been sooo terrible.
I’m trying to get my fibro under control by thinking about pleasant things and doing things that make me happy.
This morning when I woke up, I didn’t feel so stiff and my Bladder didn’t hurt until I went to the bathroom. I missed two events today because I was feeling tired, my bladder felt swollen again and my back hurts so much. I stayed home and tried to rest up, but I woke up with a fever.
This is crazy. So much is happening to me. Never a dull moment with scleroderma , haha ! I’m thankful to my hubby, kids, family and friends for always being so supportive and understanding.
Praying for a better day tomorrow. :)

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Cytoxan #2 update

I had my cytoxan treatment last Wednesday. I’m feeling a little nauseous and dizzy and my tummy feels queasy. My body feels sooooo tired. I’m so frustrated not being able to do things I normally do. Taking a shower, brushing my hair and dressing up is such a difficult task for me nowadays. I have to get ready a little earlier just in case I’ll need to lie down to rest.
I haven’t been able to sleep good lately either due to my cough attacks waking me up a few times in the middle of the night. My coughs are coming back. I’m trying to see if some prednisone will help, but so far, no relief.
I only took 1 day off work after my treatment, I’m trying my hardest to manage my sick days, but everyday is just getting harder and harder. I’m probably pushing myself too hard, but I’m glad I have options if I can’t push myself any further.
On top of my coughing and breathlessness and fatigue, my nose has been bleeding everyday, sometimes more than twice a day, boo. I blame the crazy weather who can’t make up its mind if it’s gonna be hot or cold.
Today was pretty hard. I missed church coz I was up a few times from coughing last night. I managed I take a shower and get dressed in about an hour. My body is so heavy and I’m hurting everywhere. The hubby had a show and work tonight which meant , I’m taking care of the kiddies myself. I don’t mind of course, I just don’t know how much I can do for them with me feeling the way that I do. I try to still be the same mom to them I’ve always been, the involved, the silly, the tough but loving and the helicopter parent. I want them to always remember me as their mom who spent time with them, no matter what.
What else? Hmmmm, I really miss my hubby. I’m sad when he leaves for work. I pray God will bless him with the work that is willed for Him that will give us more time to be together as a family. :)
Anyway, with all of these things happening to me, a friend of mine told me that my life is something he envies, with scleroderma and all. He said that even though I’m not well, my life is peaceful and people around me get along.
I’m so amazed with God’s faithfulness. I know we all have our own mountains before us, and I won’t know how I would deal with other people’s problems, but we are all given our own. I guess I can always focus on the bad things, but there is always so much more to be thankful for. This mountain I face is smaller than my God who can move mountains :)

God bless you and your week!

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Hello hot spring of 2014

So, here I am back at the hospital on my second cytoxan treatment. My doctor recommended me to have another round of 12 treatments. The first 6 will be 1000 mg and the last 6 will be 750 mg. I haven’t had much side effects yet, just the extreme tiredness for now. My rheumatologist said I probably won’t feel the effects until after the fourth one. Yeah, it figures since I am back to coughing again. Once the cytoxan starts working, it will decrease the inflammation in my lungs and that should lessen my coughing. I’m a little anxious about possible bad side effects. Please pray for me that I may endure it.

It’s interesting how some people are only prescribed a 6 month cytoxan treatment, while I was not only prescribed a 12 month one, but even a second round as well. I appreciate my doctors for being aggressive with my scleroderma. I will also be having monthly echocardiograms and regular pulmonary function tests (PFT) every four months.

So, aside from these hospital stuff, let me update you on other stuff about me and this “chronic illness.” I go everywhere with my oxygen concentrator. Although I’m glad I have it for emergency, I feel as if this machine gets heavier by the day. I appreciate my hubby or my friends at work volunteering to carry it for me.

We went to a kids party a couple of weeks ago, the air was a little bad, and I was playing with the kids when I started coughing and the hubby told me to sit down and take my pulse Ox. It showed my oxygen level was down at 83%. That’s no bueno. I relaxed, drank some water, and just enjoyed the party. I was happy that my breathing went up to about 93% without having to use my oxygen tank :)

The doctor also recommended a higher wedge pillow for me for my acid reflux. I had an 8 inch wedge and hubby got me a 10 inch one. I have to get used to sleeping on it. It’s pretty high that I sorta feel like I’m sitting up. Hubby said there’s even an 18 inch one. Oh MY! Anyway, I just realized that I need to be SUPER careful on what I eat and how much and when I eat. Last night, we had KFC, I had 2 pcs of chicken as opposed to my usual 1. I guess I got a little greedy. That night, even with my 10 inch wedge pillow, I felt my reflux come up from my stomach. Arrrrggg. Then I started coughing quickly right after. Hmmmm, so yeah, 1 is my new limit for fried chicken, no matter how yummy it is.

I’m currently taking dexilant for my acid reflux and domperidone for my motility. My doctor says that the food is still not going down quick enough to my stomach so if I continue to have this issue, I’ll have to start taking another medication that costs a dollar a pill, twice a day. Sigh. That’s another $60 a month on top of my other medications. It’s so expensive to be sick. But I’m super grateful for God’s provisions.

Here’s a short story about that by the way….
I ran out of some meds so the hubby went to the pharmacy to pick them up for me. He texted me and told me they were $70 dollars. I was like, “well, you know, I need it and God is our provider , so we’re good.” That same weekend, I received a $76 dollar order for my artwork. God is so amazing. He did not only pay for the $70 but gave us an extra $6. I never doubt the faithfulness of God :)

Oh yeah, I have an etsy store. Take a look if you have a chance kcmcreations.etsy.com who knows, you might find something you like. Proceeds from all sale help in my medical expenses. :)

Well, I hope you’re all having a good week so far. God bless!

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First UCLA visit this 2014

We arrived a little early at the UCLA Medical center that we were actually able to speak to a representative from the Scleroderma Foundation. She informed us about upcoming events that we should try to attend to get further information and resources.

Dr Furst asked me what has happened in the last 8 months since I’ve seen him and he wasn’t very happy. He reviewed my medical records, my PFT results, Barium Test and CT scan and said my scleroderma is actively progressing.

Dr Furst says they want to treat this condition as aggressive as possible. He’s recommending to go back to cytoxan chemotherapy for a year. I have to see if my Kaiser Rheumatologist will approve another year of chemo.

He said the good news is that most of the damage looks like it’s mostly inflammation which is hopefully reversible. And he wants to see me more regularly, at least every 3-4 months .

*sigh*

Today ‘s doctor visit didn’t turn out exactly how I thought , but I believe God has placed these doctors to take care of me and do their best to treat my condition.

And tomorrow , I’m heading back to Kaiser Sunset for my 2nd Rituxan infusion. Looking forward to some relief from my symptoms.

Goodnight, tomorrow’s another day!
Never stop fighting!

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Rituxan round 2

I had my first Rituxan infusion (round 2) last Wednesday. The day was long but I was very happy with my nurse. She knew what she was doing and she even found my vein right away.

Hubby stayed with me as always and I’m grateful he always keeps me company. We watched a lot of court shows, smacked our heads and laughed at the cases. I ended up stayed awake the whole time and I was exhausted but at least I was entertained.

I almost forgot how having chemo felt like, I couldn’t get up the next two days. My body felt like it was being pulled down into my bed. It’s been 6 days since my treatment and I’m barely starting to feel nauseous. I hope it doesn’t go through, since I only have over a week till my next treatment.

Until today though, I have to say I’ve been feeling the best I’ve felt in a long time. I think outside if the side effects, the treatment lasted me about 6 days symptom free.

Looking at the bright side of things, today is not over yet. There is still enough time to turn this day around. I’m looking up to God and just relying on His grace for strength and endurance for today.

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