Living with Scleroderma

this is nothing but a curve ball

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 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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