Hi
I'm Langston. I've started my blog here called "Planet LUpitor". I have music and art blogs in other places but tribe.net is my "staying healthy" place.
So I'm still getting my page together so come by and say hi.
I am looking to go to Burning Man if I can swing it this year. I am looking for a crew to work with. If there was a crew that had floorspace and wanted me to start working on the pagentage right away in Feb. I would totally be there. With Reynauds I welcome dry temperatures in 100+ range. I can get frostbite at room temperature.
I'm unemployed and I have nothing to do so I can absorb as much correspondence as people can send me right now which is a difference from when I was a high anxiety executive. The diffusing CREST esp the severe Reynauds killed that.
I live on a desert island known as Bodie island off the east coast of north carolina AKA nags head. There is not much happening here. Especially culturally.
People say I need to relax more but I don't know if loneliness is really relaxation.
I'm Langston. I've started my blog here called "Planet LUpitor". I have music and art blogs in other places but tribe.net is my "staying healthy" place.
So I'm still getting my page together so come by and say hi.
I am looking to go to Burning Man if I can swing it this year. I am looking for a crew to work with. If there was a crew that had floorspace and wanted me to start working on the pagentage right away in Feb. I would totally be there. With Reynauds I welcome dry temperatures in 100+ range. I can get frostbite at room temperature.
I'm unemployed and I have nothing to do so I can absorb as much correspondence as people can send me right now which is a difference from when I was a high anxiety executive. The diffusing CREST esp the severe Reynauds killed that.
I live on a desert island known as Bodie island off the east coast of north carolina AKA nags head. There is not much happening here. Especially culturally.
People say I need to relax more but I don't know if loneliness is really relaxation.
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Unsu...
Re: Hello-Former Executive, diffusing CREST, Burning Man
Mon, November 21, 2005 - 10:37 AMI have no idea what diffusing CREST is. I have intermittent problems with Reynaud's and have to tell you - the heat in the desert is nice, but the temperature drop at night can give you quite a chill.
Also beware of your PH balance in your body - I suffered an extreme reaction to the alkali in the dust, so talk to your nutritionist about acid/alkaline and lupus supportive diet.
As far as volunteering at Burningman - um - February is a bit early. There is nobody out on the desert that early. It's a lake! You should join the burningman tribe to get some ideas of projects to work on - I'm sure there are people closer to you who would have something that might interest you. -
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Unsu...
Re: Hello-Former Executive, diffusing CREST, Burning Man
Mon, November 21, 2005 - 11:49 AM"As far as volunteering at Burningman - um - February is a bit early. There is nobody out on the desert that early. It's a lake! You should join the burningman tribe to get some ideas of projects to work on"
Thank you. Yes that's exactly what I meant. Except I also need someplace to go to get off of this island. So some kind of music collective would be best.
Figuring out how to describe what I need has been half the struggle with this.
The CREST is just a list of the scientific names of the effects of my problems that happen to go together. The diffusing means it is spreading and getting worse.
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Unsu...
Re: Hello-Former Executive, diffusing CREST, Burning Man
Mon, November 21, 2005 - 12:01 PMSo, what does CREST stand for? Is this a term you invented or is it one that the medical community is currently using?
What are you doing about nutrition? -
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Unsu...
Re: Hello-Former Executive, diffusing CREST, Burning Man
Mon, November 21, 2005 - 3:00 PMI know I sound cheeky!! I Sawry. Believe me I'm not proud of any of this. I have been experimenting with different approachs to people all year. Finally I decided to localize my art and music content over there elsewhere and be totally open over here on tribe. If that openess means being brash, until I learn ways in which I can tone it down a notch and become more experienced at it. Its just something I have to go through and if you read my thread it becomes something for you to deal with as well.
Background: Patients with CREST syndrome are a subset of patients with scleroderma. CREST is an acronym for the cardinal clinical features of the syndrome in a given patient: calcinosis, Raynaud phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia. In 1964, Winterbauer described a series of 8 patients with calcinosis cutis, Raynaud phenomenon, sclerodactyly, and telangiectasia (CRST), and he noted the similarity of appearance and distribution of the telangiectasia to that seen in hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu syndrome). Although Winterbauer noted esophageal dysmotility in 4 of 8 patients, he did not include this feature in his original description of CRST syndrome. Frayha noted the frequent occurrence of esophageal dysmotility and suggested that the acronym CREST may be more appropriate. Velayos reviewed 13 patients with CREST and CRST syndromes and found the syndromes equivalent.
Several classification schemes for scleroderma have been presented and remain in use. The American College of Rheumatology (ACR; formerly, the American Rheumatology Association) criteria for classification of scleroderma requires either 1 major criterion (proximal cutaneous scleroderma) or 2 of 3 minor criteria (sclerodactyly, digital pitting scars, bibasilar pulmonary fibrosis). Proximal cutaneous scleroderma is defined as symmetric thickening, tightening, or induration of skin proximal to metacarpophalangeal or metatarsophalangeal joints. Satisfaction of 1 major criterion or 2 minor criteria offers a sensitivity of 97% and a specificity of more than 98% compared to other patients with connective tissue diseas
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