Living with Scleroderma

this is nothing but a curve ball

Follow up from my May 3rd post

on May 29, 2014

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.


10 responses to “Follow up from my May 3rd post

  1. Angela Santamaria says:

    Hi. I just saw your story & wanted to let you know that I’m fighting the same battle. I was diagnosed in Dec 2012. I had symptoms 6 mths earlier. I also like you had lots of pain, a cough that wouldn’t go away. I also have my specialist at UCLA. Only difference is that I do not take traditional medications. I have been doing Chinese medicine for my scleroderma for the past year and a half and it has made a tremendous difference in my life. The Chinese medicine doctor I see is in Pasadena. My mom is the one who found him through a friend. I went from have excruciating pain in my hands, my feet were swollen I would get hot flashes, it would be difficult to wash my hair. Difficult to sleep, I had also lost about 40lbs. I would lose my breathe walking a few steps. Now I have no pain at all, I can go hiking. I go to Tao of Wellness in Pasadena (626) 397-1009. I tell everyone I meet about how it’s helped me to help others. I still see my specialist at UCLA every 3 mths for check ups. The last time I went, in March 2014 my blood work came back normal, which was after a year of doing acupuncture & Chinese herbs. Hoping this helps. Wishing you the best of luck & praying for good health

  2. Jan Fritter says:

    I also have scleroderma & would love to stay in touch with you & discuss your disease related issues. I am at work right now so I can’t take the time right now.


  3. Sylvia Edwards says:

    I will be praying for you & your family. I watched my sister suffer with this terrible disease. I hope & pray they find a cure so you can watch your children grow up.

  4. David says:

    I’ve been studying the biochemistry of scleroderma for 7 years. Contact me if you will?

  5. Sclerogirl says:

    Keep positive!!!! Know that treatment is improving and it doesn’t have to be a death sentence. I too have the same form, although I don’t have organ involvement at this point. I’m under 2 years in & started treatment very early on. Know that support is out there if you need it. Enjoy the compliments as much as possible :). Maybe they see the radiance of your spirit in your smile!

    • kcmunda says:

      Thank you. I definitely feel the treatment helping even though I’m not symptom free, there’s still a big difference. Thank you so much for your kind words and encouragement. Wishing you a great week ahead!

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