Living with Scleroderma

this is nothing but a curve ball

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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