And this is why I started the blog…

July 2, 2010

I was so touched when I logged onto Facebook and checked out the MCTD group where I had posted my blog and found a bunch of messages from women who are going through the same issues as me. This is why I write the blog, I want people who are dealing with MCTD to know they are not alone.

As I made my way to work this morning I kept getting teary thinking about the people saying they felt they were reading about their own lives. It upsets me that others have dealt with the same pain as me but I love that we have made that connection across the globe.

Of course….still looking for fellow Aussies who have MCTD…anyone out there?

Here are a few samples of what people have shared with me on Facebook:

Sharon:
Naomi, thanks for sharing your blog. I was diagnosed around the same time you were. It helps so much to read about other people’s experiences.

Diane:
Naomi, I read your blog and felt like I was reading my own experiences with MCTD. I was diagnosed about 8 months ago and it has been a roller coaster ride. I’m beginning to think the emotional trauma of this disease is almost as bad or worse than the physical part. It is sadly reassuring to know there are others out there experiencing the same symptoms and dilemmas. Thanks for sharing with us. Wishing you more good days than bad.

Jamie:
TKs for sharing… I was diagnosed over a year ago & am still in denial most days.

Mary:
thank you so much for sharing your blog with the world. Reading it I teared up, because I too, have shared so many of those same experiences. It is so hard for some people to fully understand what we experience day to day with this disease. Thank you for being brave enough to share that and helping others in the process. 🙂

Marie:
Just read your blog and as others have said here it really does reflect what we experience with MCTD. Hope you’re doing well at the moment and keep that positive outlook.

Thankyou again for your comments. Feel free to comment or contribute to this blog.

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5 Responses to “And this is why I started the blog…”

  1. Bev said

    baaad that other people are suffering. but, good that you’ve connected with others, so that between you, a problem shared, is a problem halved? more power to you all………….. :O) bev.

  2. Louis said

    Hello. I am a male who is in the early stages of an autoimmune disease. The doctors are monitoring me closely, but not sure yet whether it will develop into lupus or mctd.

    Over the past 4 years, my wbc’s have been bouncing around, between “in range” and slightly “out of range.” My ana titers have always either been “equivocal” or at the highest, 1:80 with a speckled pattern.

    Besides that, my blood work has been has for the most part been normal.

    Now my ana titers are negative, but I have cold hands and feet–sometimes for hours at a time. But because there is no color change (white, blue, red, etc.) they do not say that it is Raynaud’s.

    About 3 months ago, I begun to experience shortness of breath but not while exercising. When I went for a ct scan, it revealed lymph nodes on my abdomen.

    Most recently, I had a blood clot in my right leg. I also had a urinary stricture a few months ago.

    Still no diagnosis, but hopeful (and perhaps in a way in denial) that whatever is going on, is “minor” as 2 rheumatologists have told me. One of them is a top rheumatologist at a prestigious NYC hospital.

    I am just in need of an emotional boost, and it is goof to know that this website exists, so that it can give hope to others.

    Thank you for letting me share.

    Louis

    • Hi Louis,

      Thanks so much for contributing. I’m sorry that it is taking so long for you to get a diagnosis. I really hope you get some answers soon and definitely keep us up to date with your progress. No matter how alone you can feel at times with something like this….trust me….I have learnt we are not alone. Goodluck Louis and I look forward to knowing your on the track to good health.
      Naomi

  3. Danni said

    Hi Naomi, I’ve only just discovered your blog, I am also mctd challenged and recently considered doing exactly this, giving people an idea of what it’s really like to live with this condition but I see you have it under control! Everything I’m reading is exactly what I’ve been through, although I’ve never been on the cocktail of meds that you’re on. I’ve researched ‘alternative’ therapies and I’m taking my annual pilgrimage to New Zealand next week to bathe in their therapeutic waters. While I feel good now, it’s not to be taken for granted! I don’t let this illness control me, I don’t have a choice, I’m on my own with very little support. Thank you for writing, I’ll keep reading now as I started from scratch – obviously have a few posts to go!
    Cheers, Danni

    • Hi Danni, good to hear from you. I’m glad you could relate to what I wrote (well sort of glad…would be better if you were well!)

      Are you an Aussie? Just coz you said you’re going to NZ for a visit, thought you might be close. I’m in NSW.

      Naomi

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