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Contact: lizhenry@gmail.com   I'm a writer, literary translator, and long-time computer geek. I'll be writing here to give BlogHer readers...
 
 
 
 

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Your blog about illness, pain, or disability means the world to me

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Blogs about illness, medical troubles, or disability have been central to my life in the last few years and have helped me more than I can say. It's Invisible Illness Week for people with non-obvious disabilities or chronic illness. So, this week I'd like to highlight a few bloggers, including people in caretaking or support roles, who share their thoughts on chronic illness, cancer, or disability along with all the other things they write about! It's especially good to look around and think how medical difficulties don't make you suddenly a one-trick pony. These bloggers write about everything. Their lives and the beauty of their relationships shine out through their stories. Even when they're cranky!

Aimee's mom is battling cancer. And Aimee's battling it with her, caretaking, being her mom's support through all the visits and bills , pain, exhaustion, and difficulties.

From diagnosis through treatment and recovery, fighting cancer is harder than anything I’ve ever known. It’s not any one thing, it’s everything.  Every blood test, rude staff member, doctor’s visit, and new medication just adds to the strain.  It takes a toll on your body which forgets how to sleep or eat normally.  It wears out your heart, which feels like it’s shattering into thousands of pieces, and just when you think you’ve collected all the shards to put it back together, it breaks again. 

How hard it is to have people ask how you're doing - routine, friendly greeting - and not to be able to say, "Fine". In Aimee's case the answer might be more like, "Enduring." Her strength and her love for her mom really come through, as she explains exactly what it's so hard to tell people when they ask how it's going.

Wife of a Wounded Marine

Wife of a Wounded Marine is written by another person whose life is affected by medical troubles you can't see when you look at her. I like how she sees her life, not denying the difficulty or her own fallibility but facing life head on and looking to the future.

After many hospitals, leg salvage, amputation, miscarriage, overdose, trips, celebrities, love, and borderline hate, we've made it and are finally entering into the next phase of our lives. I am not perfect and sometimes stress gets the best of me but I am human (and a young one at that) that is going through very serious things. I'm just doing the best that I can to juggle being my husbands backbone and still have time for myself. I write this blog to vent, to get away, and to share my story.

What a blog. Karie has a gift for telling it like it is. In her sidebar you can trace the story of her and her husband's last year, through the moment when she learns he was wounded, to photos of the daily care of his leg wounds, their battle to save his leg, dealing with the Veterans' Administration, and on through amputation and a long, long rehab. She sees and can't look away from the terrible trauma of having been a soldier in war. Physically, emotionally, and the way their buddies are also dealing with trauma.

The crazy part is more often then not terrible things like this act as a domino effect on these guys. The grief of their friend dieing in turn causes them to go have a drink or take that extra pill to get away from it. These guys are broken in a lot of ways and just don't know how to deal with this stuff anymore. They can't bear any more pain.

The ripples of our loved ones' battles spread through all our lives. Like Karie all we can do is hang in there and be supportive. Being there, witnessing pain and difficulty, and providing companionship is amazingly important.

MLOKnitting

I always enjoy MLO's book blogging and comics blogging! Lately she has also blogged a lot about ovarian cancer and what it's like to go through chemo. I thought her post on being on the wrong floor of the hospital was a good bit of patient advocacy; because she had to be in the wrong ward, she ended up with nurses who didn't understand proper pain management for people with cancer. In MLO's case, her husband stepped in and watched

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Dbl Bass Player 5 pts

I'm Sensitive......BACK OFF!!
When you do seem to be starting to care again...the good and the bad comes.
AGGRAVATION!!
That car stopped in front of my house...WHY? Aggravating. That person just walked through my yard. Aggravating. Why are you breathing so loud?!?!?!?!
OK...way too far! LOL but true.
Chronic Pain can make you CRAZY!!
http://dblbassplayer.blogspot.com/

Della

JustJayde 5 pts

Great post :)

I have a blood gene mutation called Vleiden (or factor 5 Leiden) which caused half of my body to clot (DVT - deep vein thrombosis) which has left me in a wheelchair. I also have Crohns disease. I do talk of my issues now and then but overall I try to blog about everything else in my life. :) This was a great blog to read.... thanks.

She Who 5 pts

http://disabledfeminists.com/

It has a number of regular contributors, looking at their own experience and societal expectations in a really moving way. I wound up over there after having read at

http://meloukhia.net/

 which I also recommend.

http://www.blogher.com/blog/she-who

neurons789 5 pts

It important to exercise to reduce PTSD.  Exercise increases oxygen and nutrients to the neurons and help them function properly.  I hope to set up a blog in the near future to help address this.  Meanwhile my Amazon Associates Store list a few exercisers that you can used to help you increase the cellular nutrient level of neurons.

http://astore.amazon.com/1b1r1b1r-20

jhanson555 5 pts

hey,

great comments here. i also wanted to recommend a resource i like a lot. it's a site that talks about traveling w/ disabilities ...it is so important to be able to travel ...to feel like you can do things and be active... here is the link...

http://factoidz.com/helpful-tips-for-traveling-wit... ( http://factoidz.com/helpful-tips-for-traveling-wit... )

Karoli 5 pts

Last week my son was diagnosed with ulcerative colitis after weeks of suffering mounting pain, losing 30 pounds and generally feeling miserable. This week in connection with his diagnostic procedures, we discovered he is likely diabetic as well. The latter was a far deeper shock than the former. Diabetes is a scary disease, and it has to be managed so carefully to not do damage...now we learn. At 20, he should be a carefree college kid. Instead we're working on diet and pain management to get these conditions under control. Reading this blog post and others like it reminds me of how lucky we all are, including him.

karoli

odd time signatures ( http://www.drumsnwhistles.com/ ) (life)

( http://politics.drumsnwhistles.com/ )

LMAshton 5 pts

I'm surprised you've heard of EDS. No one has heard of EDS. :)

I hadn't checked out that blog before, but I am now - thanks for the link. :)

That blog, though, highlights one thing I do NOT want to do, and that's focus on the EDS. Yes, I'm disabled (although not by any legal definition by any certifying body), yes, I'm chronically ill and in chronic pain, and yes, my life is filled with all those things. But I don't want to focus on them even more.

For me, blogging is more of a distraction to get my mind off the pain and the illnesses. It's a way to have something, anything, that is separate from all of that. It's a way for me to still be something even remotely resembling a human, a real human, and not just a broken body.

I think this might be why I've resisted a full-on this-is-what-I-have, this-is-how-broken-I-am post.

On the other hand, other than my husband, no one really understands or has even the remotest clue how this thing really affects me. No one has a clue just how limited I really am. No one has a clue how much pain I'm in all the time. The last time I wasn't in pain was sometime in the early 1990s. And that was for perhaps a few hours or a day.

On the other hand, because this thing is so unknown and, really, so confusing, even with a diagnosis, I still get a lot of "it can't be that bad". Well, actually, yes, it really can. I'm still labelled a hypochondriac, a lier, someone who's making things up.

I don't know. I'm also indecisive when I'm like this and I think I might be having a more-so-than-usual emotional day.

I think the bottom line has to be, for me, what will do me the most good and the least harm? And I don't know the answer to that, yet.

Laurie in Sri Lanka

Chilli & Chocolate ( http://food.laurieashton.com ) | A Canadian in King Parakramabahu's Court ( http://srilanka.laurieashton.com ) | LMAshton on Twitter ( http://twitter.com/lmashton )

maevele 5 pts

and I was hoping to see what mental illness disability blogs you'd rec.   not that the blogs you linked aren't wicked, I'm just stuck on MI disability after my post today

Liz Henry 8 pts

Your comment made me realize that I left out bloggers writing about depression, emotional problems, or mental illness. Though I had plenty to write about, I'm embarrassed by that oversight.  Thanks for bringing it up!

----------------

Liz Henry ( http://www.blogher.com/haystackprofile/viewprofile... )

Composite: Tech & Poetics ( http://liz-henry.blogspot.com/ )

lizzard@bookmaniac.net

Liz Henry 8 pts

Hi Laurie, I know what you  mean about being seen as a hypochondriac. That's so horrible! And I've heard of Ehlers Danlos Syndrome - mostly through all the bloggers who write about it. Have you read <a href=http://brilliantmindbrokenbody.wordpress.com/>B... Mind, Broken Body</a> ?

-----------------

Liz Henry ( http://www.blogher.com/haystackprofile/viewprofile... )

Composite: Tech & Poetics ( http://liz-henry.blogspot.com/ )

lizzard@bookmaniac.net

LMAshton 5 pts

So, does that mean I should get off my butt and write that blog post that I've been putting off that explains what the heck is wrong with me (the medical stuff, not the personality stuff ;P) and why? I've been toying with it, partially to have something to point my relatives to so they can learn about it (it's genetic, which means they can have it,
too).

While I talk about the pain I'm in or the cursed problem
I'm having, it's usually only the very bad days that I bring it up or
in occasional conversation. In reality, I'm permanently affected by it
and fall under the umbrella term of invisible disability. If I were in
a country like Canada, the US, the UK, or the like, I would, in all
honestly, quality for disability. Here, I'm viewed as a typical white
person who can't handle pain. *sigh* I've been called a hypochondriac pretty much my entire life by pretty much the entire medical community.

It doesn't help that I have a relatively rare condition called Ehlers Danlos Syndrome, a genetic collagen defect, which most doctors have never heard of and that affects my life in so many wildly varied ways simply because collagen is everywhere in the human body except in the bones themselves. Everywhere. Which means it can cause hundreds, if not thousands, of other diseases, syndromes, and such, and also means that it is extremely difficult to diagnose unless you have one of two distinguishing features. I have one, my sister has the other. Until...

Yeah, maybe I do need to write that blog post. ;)

Laurie in Sri Lanka

Chilli & Chocolate ( http://food.laurieashton.com ) | A Canadian in King Parakramabahu's Court ( http://srilanka.laurieashton.com ) | LMAshton on Twitter ( http://twitter.com/lmashton )

zoedoom 5 pts

I have a handful of autoimmune disorders (Hashimoto's thyroiditis, diffuse alopecia areata, and either lupus or CFS...having trouble with diagnosis on the last), and polycystic ovarian syndrome on top of that. Lucky me! I started getting sick when I was 10, and have even had doctors mock me. I also have Complex PTSD from years of extremely high-level stress. I don't write about my illnesses all that much, but I'm writing a memoirs that will go into my detail. I'm going to start blogging about body image, which has been strongly impacted by my health.

Modern Poverty ( http://modernpoverty.wordpress.com )

I Look Just Like You ( http://ilookjustlikeyou.wordpress.com ) (under construction)

Catherine Morgan 5 pts

Great post Liz. Here is a Chronic Fatigue Syndrome PSA...

Contributing Editor Catherine Morgan

at Catherine-Morgan.com ( http://catherine-morgan.com/ ) and Women4Hope ( http://women4hope.wordpress.com/ )

spikes_mom 5 pts

My husband has (suffers from?) PTSD and severe depression - while my blog is not dedicated to that, I find that it permeates a lot of what I write, because so much of how we deal with that truth affects me. There are not (or at least I have not found) any blogs that specifically deal with what it's like to be the caretaker for someone suffering from mental illness - I would love to see that. It is often very lonely, plus there is such a stigma still attached to mental illness that it is only recently that I have started being candid about it, writing entries about it.

Thank you for this post - it reminds me that we are none of us alone and that we all need to tell our stories.