The Upsetting News Thread

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honeybee
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Re: The Upsetting News Thread

Postby honeybee » Wed Jun 09, 2010 4:40 pm

Oh dear! That sounds just awful. :hug:

I hope it goes into remission again soon.
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Re: The Upsetting News Thread

Postby justTripn » Wed Jun 09, 2010 4:41 pm

:( Oh that's terrible. Any chance you can wear one of those old fashioned rubbery bathing caps and still swim? Or . . . pony tail pulled back to cover the bald spots? YOU MUST SWIM!!!!
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Re: The Upsetting News Thread

Postby Aikiweezie » Wed Jun 09, 2010 4:51 pm

justTripn wrote::( Oh that's terrible. Any chance you can wear one of those old fashioned rubbery bathing caps and still swim? Or . . . pony tail pulled back to cover the bald spots? YOU MUST SWIM!!!!


Nope. No swimmin' for me. I wouldn't wear one of those caps and my hair is too short to put in a pony tail. The powder I use to cover my spots (a couple a very large) would come off in the water.

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Re: The Upsetting News Thread

Postby Alelou » Wed Jun 09, 2010 4:54 pm

Prayers and good vibes and hugs :hug: :hug: :hug:

Have you tried any nontraditional medicine? Even just a therapeutic massage could help you cope with the feelings, if not the actual disease. (It could be that it's just the sheer luxury of having someone else willing to focus on you and your needs for a full 50 minutes that feels so good -- especially when your hubs is not being as supportive as you could wish. At the risk of sounding cynical, I think that's pretty common.)
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Re: The Upsetting News Thread

Postby Aikiweezie » Wed Jun 09, 2010 5:03 pm

Alelou wrote:Prayers and good vibes and hugs :hug: :hug: :hug:

Have you tried any nontraditional medicine? Even just a therapeutic massage could help you cope with the feelings, if not the actual disease. (It could be that it's just the sheer luxury of having someone else willing to focus on you and your needs for a full 50 minutes that feels so good -- especially when your hubs is not being as supportive as you could wish. At the risk of sounding cynical, I think that's pretty common.)


Insurance doesn't cover non-traditional medicine. If I could afford it I would do just about anything. I bought an aroma therapy/essential oil that had a positive effect in clinical trials, but it is impractical. Rubbing oil on your scalp is MESSY!

I AM getting a massage at a lovely spa next weekend while we are in Wisconsin.

Thanks for the support.

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Re: The Upsetting News Thread

Postby crystalswolf » Wed Jun 09, 2010 5:45 pm

:hug:

I'm hesitant to bring it up because of a recent thread but do you meditate? I ask because I believe I've heard that stress can aggravate immune disorders and a little meditation each day may ease some stress.

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Re: The Upsetting News Thread

Postby honeybee » Wed Jun 09, 2010 5:51 pm

Obviously not a doctor (and I know nada about your particular condition Aikweezie) but I did a big article on MD Anderson Cancer Center awhile back.

They do everything in their power to reduce the stress of their cancer patients - from trying to paint the walls comforting colors to offering good food to offering meditation classes. They have hard research that indicates that stress does have an adverse affect on many patients' immune system - and cancer treatment is by nature stressful
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Re: The Upsetting News Thread

Postby Aikiweezie » Wed Jun 09, 2010 6:06 pm

Crystalwolf - I don't meditate. Not because I have any kind of issue with it, I just haven't really explored it fully. I've done it as a part of my martial arts training, but that's it. And the goal for THAT type of meditation is to clear your mind so you can smash your opponent more effectively. ;-)

My first experience with alopecia was when I was 16, and then just a single bald spot again when I was about 27 or so and now. The other episodes were very brief but this has gone on for 3 years. I must say I don't fully understand how stress affects this. There have been times where I have under MAJOR MAJOR MAJOR stress and didn't have it. I am a very social type, a go, go, go person and I am often very lonely and bored. I had no idea being a full time stay at home mom could be so stressful. No sure if that's it or what. Or maybe it has nothing to do with stress. Even the National Allopecia Areata Foundation has no idea what triggers this.

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Re: The Upsetting News Thread

Postby bluetiger » Wed Jun 09, 2010 6:22 pm

Aikiweezie, sometimes when things are bad just knowing there are people that care and send good wishes helps. I hope that is a least some comfort for you because we do care :hug:
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Re: The Upsetting News Thread

Postby Asso » Wed Jun 09, 2010 6:40 pm

Bluetiger is right.
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Re: The Upsetting News Thread

Postby Alelou » Wed Jun 09, 2010 7:00 pm

Aikiweezie wrote:Crystalwolf - I don't meditate. Not because I have any kind of issue with it, I just haven't really explored it fully. I've done it as a part of my martial arts training, but that's it. And the goal for THAT type of meditation is to clear your mind so you can smash your opponent more effectively. ;-)

My first experience with alopecia was when I was 16, and then just a single bald spot again when I was about 27 or so and now. The other episodes were very brief but this has gone on for 3 years. I must say I don't fully understand how stress affects this. There have been times where I have under MAJOR MAJOR MAJOR stress and didn't have it. I am a very social type, a go, go, go person and I am often very lonely and bored. I had no idea being a full time stay at home mom could be so stressful. No sure if that's it or what. Or maybe it has nothing to do with stress. Even the National Allopecia Areata Foundation has no idea what triggers this.


Absolutely. In fact, since alopecia is an auto-immune disorder, it doesn't follow that reducing stress to boost the immune system will help. Maybe Aikiweezie actually needs to load up on stress. Maybe she needs some of those worms they've researched in Britain for treating asthma... ( :shock: !!!)

I suffer from excema, Aikweezie, and I can tell you that heat and sun are my main triggers, or some residue on fabric, or the wrong kind of latex, or God only knows. It's really unpredictable. And once a flare up gets out of control (I can usually nip it with strategic use of steroids if I notice it starting) it's very hard to stop the runaway train. At least I know that steroids eventually will work -- as long as I don't drop them too quickly and get a rebound effect. Your issue sounds a lot harder to deal with.
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Re: The Upsetting News Thread

Postby crystalswolf » Wed Jun 09, 2010 7:30 pm

I really don't know much about autoimmune disorders. I've only known 2 people (friends of friends) that suffer from them and reducing stress was something they spoke of.

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Re: The Upsetting News Thread

Postby Alelou » Wed Jun 09, 2010 7:40 pm

Who knows, maybe it helps. Auto-immune disorders sure as hell CAUSE stress, so getting rid of them usually helps reduce it. I also wouldn't be at all surprised if the brain gets involved displacing anxiety onto something external so that you can worry about that instead of whatever it is you're really worried about.

When I was under the worst stress ever with a terrible awful boss from hell, I felt like I couldn't swallow anything, that pills and food were was always getting stuck in my throat, where I could feel them just sitting there, especially at night when I was trying to sleep. That was definitely one of the most unpleasant periods of my life. But that was just a plain old classic psychosomatic symptom. My boss was literally sticking in my craw.
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Re: The Upsetting News Thread

Postby panyasan » Thu Jun 10, 2010 4:25 am

Aikiweezie wrote:I had no idea being a full time stay at home mom could be so stressful. No sure if that's it or what. Or maybe it has nothing to do with stress. Even the National Allopecia Areata Foundation has no idea what triggers this.
For a woman hair is important and I can imagine losing hair is very stressfull. My husband, who is a stay at home-dad said he never thought it would be so busy and sometimes stressfull. He is suffering from a immune disorder as well, causing pain and now to a lesser degree skin problems. I know that sunshine helps in many of this cases and I read also with allopecia. Any way, big hug for you. :hug: :hug: Know that we care. :hug:
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Re: The Upsetting News Thread

Postby Aikiweezie » Thu Jun 10, 2010 4:33 am

You folks are the best. Thank you! :wave:


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