Living with Scleroderma

this is nothing but a curve ball

It’s been a tough week

on May 3, 2014

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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3 responses to “It’s been a tough week

  1. Bre says:

    HUGS!!!! I’m so sorry you’re having a tough time right now. I wish I could do something to help. That is really interesting about the bladder though. I have had similar issues with mine. But I totally understand the never a dull moment. If it’s not one thing, it’s another. You’re in my prayers. Wishing you a happier week!

  2. Jonaka says:

    I am a 40 year old mother of two children (4, 7). I was diagnosed with Diffuse Sceleroderma along with Pulmonary Hypertension in 2011. It has been a journey. For the first two years I was in chronic pain. My breast, feet, hands, legs and stomach were painful to the touch. I tried the holisic approach.
    ASEA water, acupuncture, yoga, natural supplements (folic acid, vitamin e c d), fish oil, infared heat therapy and mineral oil cold packs. I did extensive research on holistic therapy. My pain in all areas have gone after three years. My skin is returning to normal from being thick and leathery.
    I am now trying to conquer my pulmonary hypertension. This brief burp in my life has caused major changes. I wear my oxygen most of a 24 hour day. I am currently taking the max dosage of Letaris/ Adcircca. Medications are working 85 percent.
    I pray every day and keep a positive attitude. Know matter what you are going through see yourself healthy and having a positive outcome.
    I am lifting you up in prayer and asking God to heal you from the tips of your toes to the top of your head. Stay encourage. God Bless You.
    Sincerely Jonaka

    • kcmunda says:

      Sorry for the late response. Yes. I will check it out. Thank you do much for taking the time to write to me.

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