Tuesday, October 7, 2014

Check this out: Blackbird at Night Blog


I've only recently discovered a chronic illness blog written by Jane Waterman. It's entitled Blackbird At Night  and in it Jane discusses her experiences with Sjogren's syndrome, depression, and other invisible illnesses. Her most recent post is excellent. Check it out:

Beginning With Chronic Illness 
I feel like I’ve waited my whole life to begin. In my young life, there were smaller obstacles: a lack of confidence and encouraging remarks, as well as the feeling of being different and sensitive in a noisy, overwhelming world. In my twenties, there came other challenges like physical and mental illness. Sometimes, just being alive felt like a challenge. I’ve been waiting to begin this post for months, as if waiting for the correct alignment of the stars that will make it ‘right’. 
The problem is, life never feels quite right – not for a perfectionist in recovery – much less one who never knows on any day whether I’ll be able to get up and shine, or if I’ll be lying in bed feeling unfulfilled and miserable that I’m not beginning what I’m sure I’m meant to begin. 
The problem, especially when you’re ill, is finding the time to begin – knowing that within an hour you might have to lie down, and your life work will be interrupted for the millionth time (In fact, I had to lie down and rest in the process of writing this post). So, you get used to not beginning, as you figure that whatever you start will surely be interrupted. So you don’t begin...continue reading here

5 comments:

Bubble Girl:Navigating the world in a bubble said...

Thank you for sharing, I bookmarked her blog and will add it to my following list on my blog.

Jane said...

Hi Julia,

You made my day! I've been reading for a long time and I opened your newsletter today to see my blog. What a thrill! :) I haven't seen that much interest on my blog in a long time.

Thank you for visiting, and I hope you might find things you enjoy in the future. I have been in a flare lately, but hope to get back to more writing soon.

Many blessings,
Jane

Kathy said...

I've been diagnosed with Sjogren's for many years. I found your blog when looking up info on decreased sweating and came upon your post on this from 2011. Everything you described fits me- I don't sweat under my arms, I sweat profusely around my hair line. I get clammy a lot and flushed from eating or doing minimal activity. I'm not glad another person struggles with this, but it helped me to read this to know what I'm dealing with and why. I have horrible temperature deregulation too.
You might be interested in this- I've been diagnosed with over a dozen AI diseases, the main ones being Myasthenia Gravis, Multiple Sclerosis, Anklyosying Spondylitis (another greatly misunderstood disease, it can be far more severe than anything you read about), and ulcerative colitis to name a few. I'm waiting on lab results to see what next one they decide I have (enter sarcasm here).
I have what is called a "primary immune deficiency" (PIDD) and I get monthly IVIG for it. This has been the most effective treatment for me by far.
A PIDD can result in multiple autoimmune diseases because often times one part of the immune system may be deficient so other parts may try to "help out" (simple explanation is that one guy is missing what he needs to do his job so other guys from different parts of the immune system try to help him out but they have a different function and instead of helping him out they over produce).
I thought you might be interested in PIDD's and you can read more about them at www.primaryimmune.org I believe it is.

Julia Oleinik said...

Jane -- Keep up the good work! Hope our flare resolves soon.

Julia Oleinik said...

Hi Kathy -- I have not heard about PIDD before, so thanks for the heads up. I'll check it out!

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