Living with Scleroderma

this is nothing but a curve ball

About Me

Hello There!

My name is Kristine and I was diagnosed with SCLERODERMA last March 22 (2012).

I started this blog to document the whirlwind of events that we’ve been going through ever since my diagnosis.

It’s not easy being sick, but with the love and support of the people around me, it makes me more hopeful… that everything will turn out ok!

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16 responses to “About Me

  1. ashutosh says:

    you are quite an optimistic person. Must say you have an amazing approach towards this disease.

    My mom has this for close to 20 years now and she has a very severe form of this disease. She has been tested positive for Breast cancer recently and she might have to undergo Chemo therapy as well.

    Does the Chemo approach work successful for you.

    Please let me know the details

    Regards
    Ashu

  2. Jean Hehrer says:

    Hi Kristine,
    I just found your website tonight.
    For the past hour or two I have been reading your entries, listening to your inspirational songs, watching your video’s and wiping up tears. Your story has touched my heart in so many ways and I thank God for leading me to you.
    As I sit here on my couch with my laptop on my lap (duh) I wonder how you are doing. How was your Christmas? How are your beautiful children? How is your amazing hubby? And yes I did read your entry about being asked how you are doing. The difference though between friends or co-workers asking you and me asking you is that I actually do want to hear the answer.
    I was diagnosed with diffuse, systemic scleroderma in 2007.
    But to be totally honest…. if I wouldn’t have caught the flu this weekend…. I would have forgotten exactly how severe the body pain and inability to get out of bed for days felt like. So I guess I should be thanking God for using the flu to remind me of what active scleroderma feels like.
    I won’t use your space for telling my story but I do want you to know how happy I was to hear that Dr. Daniel Furst is involved in your care. He and my doctor (James Seibold) are friends, co-authors, colleagues, and researchers with many years of scleroderma experience. Please continue to allow him to have a very active (if not total) role in your care. My visits with Dr. Seibold involved almost 5 hours of round trip travel. I understand the difficulty of long trips. I believe I am alive today by the grace of God and the aggressive medical treatment I received.
    Please contact me if I can offer any help.
    praying unceasingly… for you,
    Jean

  3. Ann Havelock says:

    You are amazing. I was diagnosed on 3/30/09 after 1 1/2 yrs of extreme pain/suffering with Systemic Diffuse Scleroderma. Dr. Dan Furst is our guest speaker at our annual Scleroderma patient education conference for the last 3 yrs and will be again on 9/28/13. I founded Scleroderma Angel Foundation 501 (c) (3) nonprofit to educate and promote Scleroderma awareness in all media worldwide. We just did a 15 second Scleroderma ad on ABC station KOHD in Central Oregon and KEZI in Eugene, Oregon for three months through end of April and hope for donations to pour in so we can do longer ads and keep them on the air and eventually be on National TV. Go to YouTube under nonprofits and click on Scleroderma Angel Foundation 15 second ad if you want to see it and LIKE it. Ann Havelock

  4. Lisa Wright says:

    Hi Kristin,
    I just read an article on you and I am grateful you shared your story with us. I was interested in reading your story because a few years back, my body was in an autoimmune reaction mode, and my initial blood work showed counts of Scleroderma. I was referred to a Rhuemy, but sought out my friends too. One of my dear friends, felt like she knew someone that had had that…did a little research from her family and confirmed it was a close cousin. Her cousin was told by all the best around the country to get her affairs in order. I’m not sure how…but she ended up at The Arthritis Center of Riverside, where so many patients are sent from Stanford and UCLA as a last resort. These doctors have a design of antibiotic treatments with supplements that stopped the progression of this woman’s disease. It hasn’t progressed in over 12 years. Everything softened, her skin got it’s coloring back. The only sign you can tell are her hands that went through the trauma joint damage. I myself went to them and my autoimmune never developed after I went on their antibiotic treatment. I love these doctors…they are God loving and amazing humans. I am sure you have been inundated with advice…but please…please see them. They will not tell you to stop your treatment. Please see if there is anything they can offer you that you haven’t tried. http://www.thearthritiscenter.com. I swear on my life that they are one resource you will not want to over look. Please let me know if you have any questions or would like to speak to my friend’s cousin. She is quite a resource.
    XOXO,
    Lisa Wright

    • gsojudy says:

      Lisa Wright do you know what antibiotics regiment? Just diagnosed.

      • kcmunda says:

        Antibiotics is for infection I guess. Like when I had a chemo treatment, I had a high fever and had Urinary Tract Infection, they gave me antibiotics.

      • Lisa Wright says:

        m not sure the regiment that would be used for scleroderma, but I was on doxycycline (anti malaria) and z-pack drug. I rotated those daily and took probiotics and lots if supplements. The blood work done is extensive, so they pay attention to how to bring your body back. There is a good website they have published info on called http://www.theroadback.com I hope this finds you well.

    • kcmunda says:

      Thank you so much. I will check them out!

  5. Eric Goldstein says:

    Hello Kristin,

    A dear mine sent me the link to your interview with KCBS from last evening & I wish to say that it was wonderful that you were willing to share your story with “the world”. I myself having been doing the same here on the east coast as much as possible.

    I too have Scleroderma (Diffuse Systemic Sclerosis Sine) and a rarity as I am 2nd or possibly 3rd generation with the disease. And like many of us with the disease I have Overlap Syndrome too (Raynaud’s Phenomenon, Primary Sjogren’s Syndrome, Fibromyalgia and the list goes on). Because of having gone through this with my mother and now myself I have been taking all this public. I am also a member of the Scleroderma Foundation Tri-State Chapter and founded ScleroMen, an outreach programme for men like myself living with Scleroderma.

    Next month I will be in SoCa attending the National Conference and I hope I have a chance to meet you and perhaps speak a bit.

    I live with the motto/belief to: Stand Up! Speak Up! Speak Out ! Be Noticed!….this is to give a voice for myself and those who are unable to do so. Your way of living your life is doing just that and always be proud of what you have and are doing. Despite your scenario you continue to “live life” and to give your children everything possible and you cannot ask for anything more than that.

    Again, if you are attending the National Conference next month…..I look forward to speaking.

    Cheers!

    Eric / ScleroMen

    • kcmunda says:

      What a great idea to start a group for men with scleroderma. I would love to meet you as well. Yes I’ll be there at the conference, God willing. I am looking forward to meet people who inspire and encourage others to keep going in difficult situations. 🙂

      • Eric Goldstein says:

        Yes, you will be there as somehow you will find that strength within you and it gives you something to look forward to …..only 4 more weeks from tomorrow…….

        The Little Engine That Could

        A little railroad engine was employed about a station yard for such work as it was built for, pulling a few cars on and off the switches. One morning it was waiting for the next call when a long train of freight-cars asked a large engine in the roundhouse to take it over the hill. “I can’t; that is too much a pull for me,” said the great engine built for hard work. Then the train asked another engine, and another, only to hear excuses and be refused. In desperation, the train asked the little switch engine to draw it up the grade and down on the other side. “I think I can,” puffed the little locomotive, and put itself in front of the great heavy train. As it went on the little engine kept bravely puffing faster and faster, “I think I can, I think I can, I think I can.”

        As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, “I—think—I—can, I—think—I—can.” It reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, “I thought I could, I thought I could.”

  6. Michelle Roberts says:

    Hi Kristin,

    I’m interested in doing a donation to http://www.gofundme.com/Project10 but don’t have a credit card. GoFundMe will not take PayPal. Can I send to your address?

    Bless you.

  7. Lisa Wright says:

    I’m not sure the regiment that would be used for scleroderma, but I was on doxycycline (anti malaria) and z-pack drug. I rotated those daily and took probiotics and lots if supplements. The blood work done is extensive, so they pay attention to how to bring your body back. There is a good website they have published info on called http://www.theroadback.com I hope this finds you well.

  8. Hi Kristine,

    I was great to have finally met you and your husband at the conference and I wish you and your family the best.

    Please stay in contact and let me know how “your world” is doing.

    Cheers!

    Eric

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