Why I’m opening up with you
June 14, 2010
I’ve hesitated over writing this blog for the last few months. Do I really want to put my weaknesses out there on the world wide web for everyone and anyone to know? I didn’t at first because I was job hunting and I didn’t want the fact that I was living with a chronic illness to ruin my chances of landing a job because I know it can be a little off putting.
I’m also ‘chronically single’ haha and didn’t think putting my health issues out there to be googled by potential dates was going to help my single status change but then I thought…who cares, it’s me, they’ll find out eventually and there is a more important reason why I wanted to do this.
You’re not alone
When I was being diagnosed I did ALOT of googling, so did my mum and I didn’t really find many personal experiences out there. Considering how common blogging is and forums etc I really felt as though the only people speaking about this illness were middle aged American women with husbands and families and issues with the American health care system. To an extent it was comforting to know others were experiencing the same but on the other hand, I didn’t feel like I could relate.
I’m 26, I’m single, living an hour from my family, I live in Australia and have not come across any other Aussies on any forums that have this illness. This isn’t actually about where we’re from, it’s more about those people out there who are dealing with being a youngish adult and are dealing with the massive change in lifestyle this illness brings about.
But more importantly, I didn’t want this blog to be all whinge, whinge, whinge. Sometimes MCTD gets me down, severely, but realistically, there are people worse off than me and I’ve gotta keep going. So for those people who get diagnosed and do their research and read all the information that makes them think their life is going to be over…IT’S NOT! I am living proof so keep positive and know, always, you are not alone.
The format of this blog
This blog might jump around a bit. The next blog entry I’ll post is from a few months ago when I was newly diagnosed and I will also fill you in of what it was like before I was on medication….because medication makes a MASSIVE difference. Feel free to comment and contribute.
naomijoyce83
MCTD-The truth, the challenge, the hope 
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Hi Naomi
It’s Tina, Di’s friend. When I was your age I was diagnosed with a tissue connective disease. When we moved to Australia I was diagnosed with Lupus. I understand the fatigue which steals so many precious hours of your life and some of the physical pain.
I no longer have this disease and all my blood tests are normal. I’d love to talk to you about it and just maybe an area that medicine hasn’t considered.
I loved your blog and can emphasise with you, keep being positive and don’t ever give up hope you will be cured
Hi Tina,
Thanks for the comment. It is so encouraging to hear you no longer have the disease. It’s hard to believe I could actually go into remission one day. I’m not counting on it though…but good to hope for. We’ll have to have a good chat next time I visit Di maybe? Or swap numbers through her.
Thanks again Tina.
Naomi
Hi Naomi,
I have read most of your blogs and find it ironic that you are in Australia, as I have just moved back to the US after living in Melbourne for 3 1/2 years. I absolutely love your country and wish I could have stayed longer. Anyway, when I was living in Australia, my rheumatologist there told me I had lupus; upon my return to the US, the doctor here told me that no, I had MTCD. I have only been rediagnosed for three weeks and this MTCD scares me…more than lupus, because when I was told I had lupus, I was told I had only mild lupus. I have so many questions…were you on Imuran and Prednisone at the same time? I am and I am short of breath and my legs and arms hurt…I find it hard to do anything for any length of time. Did you have that? I am pretty sure that these new developments are due to the medicine..what has been your experience?
I know I am writing a lot but it is so nice to talk to someone with this disease. Please write back when you can. Thanks! Charlene
Hi Charlene,
Thanks for your comment and I’m sorry to hear you’ve got MCTD as well. I’m not on Imuran and haven’t been so I’m not sure if those are side effects of that you are feeling. I’m only on 5mg of prednisone.
I have had shortness of breath a bit and fatigue is definitely a part of MCTD. I do always get exhausted if I do any exercise. I would definitely speak to your doctors about how you’re feeling, especially if it got worse once you went on different medication.
I hope you’re feeling better this week, feel free to contact me if you ever want to vent.
Naomi
Hello, I’m Kat. 20 years old and some change, etc., etc. I wanted to say I really appreciate what you have done. And I feel inspired by you, writing and sharing all the experiences you had to share about MCTD. It’s more comforting than the medical sites that basically say the thing. ‘MCTD- Mixed Connective Tissue Disease-… etc. etc.’ It brings color and awareness to the condition and I have to say it’s nice to know someone who’s more experience so I don’t feel like so ignorant. It’s like “Yeah, I have MCTD, so what to do from here?” In the middle of college, and things are changing. Moving left and right, and trying to be consistent in my studying to get my degree and be independent already. Still… It’s nice to know someone whose ‘been there and done that already’. I’m going to write my own blog, too =) Thanks for helping to start off my day right! =)
Hi Kat,
Thanks for your note and I hope you’re doing ok. I look forward to reading your blog as well. And I must write another entry soon!
Cheers
Naomi
You’re welcome. If you could check ’em out that would be great! I think it’s missing something though. Could you give me you opinion of how I could improve? I think my entries are too distant or the style of how I write is too much like a story. =/ I’ll have to improve it overtime. Hopefully =)