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Comment by Kasey on May 5, 2013 at 7:03pm

Happy Cinco de Mayo or Happy Sunday, whatever.  How are you doing out there?  any updates.

I've been neglectful again.  I dropped a lot of online activities because it was hard to do stuff (long story) but I have a tablet that makes it easier now. 

I'd love to hear how you are doing, so please post and let's get ths group going again!

Comment by Kasey on March 27, 2013 at 5:03pm

Collette

Welcome.  I am sorry to hear about your recent diagnosis.  It is a shame that so many support sites (and sites in general for that matter) are awash in religious sentiment.  I find that a real turn off and it keeps me off of a lot of sites.  You have a lot of courage to keep looking for a site that will support you without weighing you down with a lot of religious baggage. 

I'm afraid I don't have any particular insights into your condition, but I have a lot of experience with chronic illness and pain.  If you're comfortable doing so, please share more about your condition.  Twenty-four is so young to be diagnosed with a serious illness.  How are you holding up?

Kasey

Comment by Colette Duncan on March 24, 2013 at 10:40am

I'm 24 years old and I was recently diagnosed with the autoimmune disease Myasthenia gravis.  I have joined a lot of support groups online but god and prayer is mentioned in almost every post. It makes me feel even more alone and isolated which is not what I'm looking for. I just want to be able to get support for this awful disease without having people pray for me and tell me god will heal me. 

Comment by Jacklyn Marianne Land on July 28, 2012 at 7:37am

I am 24 years old. I just discovered this group. I have Fibromyalgia with chronic migraines. I recently left school because the pain is too unbearable. Medicine doesn't seem to help. My mother is taking care of me. I have been denied insurance, so I can't see a doctor. I had insurance through the university as a student. Not anymore, as I am no longer a student. I have applied for disability, but it may take up to 4 months to receive an answer. I have no way of seeing a doctor. My mom keeps pestering me about my atheism. She keeps telling me her christian god is punishing me and that I can't be that sick if I am unwilling to pray to her god or any god or goddess. This adds to my stress of not being able to finish college. I need help dealing with my mom and my illness.

Comment by Lisa Chan on June 5, 2011 at 8:58pm

Hello, friends! My background involves systemic inflammation with a diagnosis of ulcerative colitis (for 20 yrs), psoriasis, tendinitis, and mystifying vascular events. I'm currently a Remicade patient (11 months or so).

 

And I recently started blogging about my journey http://www.freethoughtfiber.com - creativity through fiber arts, freethought, and essays of interest to those with chronic illness.

 

Looking to meet other friends to talk about art and expression through creative hobbies and work.

 

 

Comment by Kasey on February 7, 2011 at 2:28pm

Welcome Jack.  I've been a very neglectful group owner.  Good to hear from you.

 

Regarding your feeling of guilt about mass prayer, it is not like you could stop them from praying for you.  Allowing it doesn't mean you believe in it. 

 

Praying for someone is an easy thing.  Much easier than actually doing anything like helping with expenses or bringing by a meal or volunteering at a hospital. 

 

It is odd for me to think of these large groups of people praying for someone they don't know, but if they chose to do it, what can you do about it?  Asking them not to seems a bit childish.  I equate "I'm praying for you" to "I'm thinking of you." and try to appreciate the sentiment.  Empathy is a natural response when hearing of another human's bad health.

 

Kasey

Comment by Jack Harkness on December 4, 2010 at 2:24pm

It's been about 16 months since I survived a stroke. I wrote the following shortly after my stroke and did not publish it till now.

Hi, my name is Jack Harkness, I am a 59 year old Scot living in South Africa and have been a Bright for some years. I lost my “faith” in my local indoctrinated religion at about 12 years old, and when I eventually encountered the Brights movement it was “natural” to join.

Less than two months ago I had a stroke, which caused me fairly severe, mostly physical, impairment. Far from sending me reeling towards Supers, the fact of losing permanently a part of my brain has reinforced my Atheism. I can rationalise death as being a very big stroke resulting in losing permanently one’s whole brain.

I have had so many people “praying” for me, some who have never even met me, that I’m beginning to feel a little guilty! All my close family, friends, colleagues, etc, are very predominantly Supers of one sort or another and many have reached out to their respective churches to pray for me! My atheism is no secret! Am I being hypocritical or just polite when I allow a group of strangers to “pray” to their god to help me while standing round my bed?

It probably would be nice to be able to melt into that fuzzy, warm, supernatural utopia that is the comfort of the majority of our species but I’ve got too much of my brain still working!

Comment by Kasey on July 2, 2010 at 5:45pm

People are always surprised when I say that I'm never going to get better and that I just hope to get worse as slowly as possible. It seems that people aren't used to it when someone faces reality about their illness.

I have degenerative disk disease now and narrowing of the spinal space, etc. It doesn't get better in time...ever! I'd rather be realistic about it than to expect some magic cure.

For all of you in the US, have a happy holiday weekend. Everybody else have a good weekend too!

Comment by Kasey on June 30, 2010 at 12:20pm

Welcome Jasmine. I know exactly what you mean about chronic pain forums. I once made a group very mad at me by asking them NOT to have a Sunday prayer. I'd put up with all the prayer requests and blessings, but when they decided to have a formal prayer on Sunday I couldn't take anymore. Boy did my "friends" turn on me!

Comment by Tori on December 2, 2009 at 4:03pm

Welcome Ronin. I'd never heard of Inclusion Body Myositis before. Thanks for telling us about it, though I'm sorry it has to be from having to experience it.

I totally agree with you about the 'You're handling it so well' statement. It's kind of like people asking me, 'How's your back today?', as if the after-mass of what happened to me is like having a backache. It's nice they care enough to ask, I suppose, but that one just really bugs me.

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