"I had to become an expert on the various masks and types of CPAP machines in order to get my insurer to give me the combination that works for me. It took persistence and several months, but I've been very happy and have used it every night for…"
Alopecia World
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ChasingOrion
- Female
- Boston, MA
- United States
- Blog Posts (15)
- Discussions (2)
- Events
- Groups (10)
- Photos (39)
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- Videos
ChasingOrion's Groups
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Art is life; life is art
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Rodeli commented on ChasingOrion's blog post I don't have cancer. Stop asking me"I have sleep apnea too. I tried the cpap machine but it didn't work well for me. I did lug it along on a trip to Central America years ago. I really should look into it again. I hear they have made advancements in the masks since then."
Mary commented on ChasingOrion's blog post I don't have cancer. Stop asking me"Thanks, Rodeli! I love Amazing Race, and have often daydreamed about being on it. I feel absolutely certain that an openly bald woman with alopecia would have a great chance of being cast. (I also loved Margie and Luke). The problem is that I have a…"
Rodeli commented on ChasingOrion's blog post I don't have cancer. Stop asking me"Thank you, Mary. You are one of my inspirations you know. Glad you like the website--it's part of my healing I guess. Anyway, I checked out your links and always enjoy you sharing your experiences. I do think you are not too old to be on…"
Mary commented on ChasingOrion's blog post I don't have cancer. Stop asking me"Here are two of my other short blogs about the cancer question:
http://www.alopeciaworld.com/profiles/blogs/first-time-ive-lost-it-in
http://www.alopeciaworld.com/profiles/blogs/im-a-survivor-too"
Mary commented on ChasingOrion's blog post I don't have cancer. Stop asking me"Also - Rodeli - I hadn't seen your Balditudes website. It's FABULOUS!"
Mary commented on ChasingOrion's blog post I don't have cancer. Stop asking me"Yes, it sucks being asked that, especially when you're out in public bald and NOT thinking about being "different", just being yourself and not self-conscious. Then the cancer question snaps you back and reminds you that you are.
BUT,…"
Profile Information
- Relationship Status:
- In a Relationship
- About Me:
- I am a musician who loves art of all forms! I'm currently living and working in Boston. I tend to be a 'grab the bull by the horns' kind of person, and I try to be pragmatic. I enjoy anything that makes me laugh, reading, adventure (of most any form), running and above all else, music.
A few years ago I was diagnosed with AA, and slowly my body has gotten rid of any trace of hair since. I've been wearing a wig for a little over a year, and enjoy having hair. Since wearing a wig I've ventured outside a few times sans hair, but I hate the stares I get.
- Do you have alopecia?
- Alopecia universalis
- Are you age 18 or older?
- Yes - I am 18 or older
ChasingOrion's Photos
ChasingOrion's Blog
I don't have cancer. Stop asking me
Posted on November 12, 2011 at 4:00pm 27 Comments 1 Favorite
I've heard "I assumed you had chemo" twice already this month. I hate when people assume that I have cancer. I'm not dying, and you don't need to pity me. I can never tell if a new person in my life is being genuine, or if they're talking to me out or pity or fascination. I'm just so tired of it. The worst thing - my health insurance company won't help me pay for wigs.
I have a tiny tuft of brown hairs on the back of my head, solidly in the crown area, and it's the most hair I've had…
Continue Adhesive wigs
Posted on January 2, 2010 at 6:40pm 5 Comments 0 Favorites
Hair club was too expensive, so now I do my own upkeep of my wig from them, and all of the adhesive applying. Their service is simply not cost-effective on a musician's budget.
But I do recommend them! I haven't had any other experiences with wigs that use adhesive...but I'd definitely be interested in branching out once my current wig has had enough.
Does anyone use other kinds of adhesive wigs? If so, from where?
ciao :)
co
But I do recommend them! I haven't had any other experiences with wigs that use adhesive...but I'd definitely be interested in branching out once my current wig has had enough.
Does anyone use other kinds of adhesive wigs? If so, from where?
ciao :)
co
hair
Posted on June 30, 2009 at 12:45am 2 Comments 0 Favorites
So...I'm extremely tired of wearing a wig. and treating my head twice a day. and poking it with an acupuncture mallet twice a day. So I quit doing that.
But, I am *very* attached to hair. I always have been, probably always will be. So I've split the difference. I'll let my immune system do whatever it wants to do (concerning hair, that is), and deal with the hairless part in the meantime.
I'm joining hair club. :) I have an affordable discount and good credit, so I can… Continue
But, I am *very* attached to hair. I always have been, probably always will be. So I've split the difference. I'll let my immune system do whatever it wants to do (concerning hair, that is), and deal with the hairless part in the meantime.
I'm joining hair club. :) I have an affordable discount and good credit, so I can… Continue
Thymuskin + pear blossom
Posted on May 22, 2009 at 12:13pm 2 Comments 0 Favorites
So! I've been using Thymuskin shampoo/treatment and a seven star acupuncture mallet since my last post, and am glad to say that I am having some regrowth. Most of this regrowth is tiny fuzzies, not terminal hairs, but it's progress. I'll post a picture when some regrowth is visible.
:)
:)
Thymuskin
Posted on April 18, 2009 at 10:15am 1 Comment 0 Favorites
So, I'm going to try Thymuskin. It seems to be a worthwhile treatment.
I responded very well to cortizone injections and to most other treatments for Alopecia, and am the only one in my family with any auto-immune malfunction, so I think this might be a good move for me. This move comes from a combination of things, mostly not wanting to wear a wig any longer. But, if I don't wear a wig then people assume that I'm sick and give me pitied looks... I get them even if I'm wearing a bandana or… Continue
I responded very well to cortizone injections and to most other treatments for Alopecia, and am the only one in my family with any auto-immune malfunction, so I think this might be a good move for me. This move comes from a combination of things, mostly not wanting to wear a wig any longer. But, if I don't wear a wig then people assume that I'm sick and give me pitied looks... I get them even if I'm wearing a bandana or… Continue
Comment Wall (32 comments)
- At 8:53pm on January 3, 2010,
Jules said… - Your hair club wig looks just like your own hair...beautiful! Happy New Year!
- At 8:21pm on October 27, 2009, Jules said…
- Hi,
Just read one of your blogs & I wondered if you ever went with hair club & what was your expierience like? Are you wearing any wigs in your phots? You look great!
Jules
- At 6:15am on September 13, 2009,
Tracy and Amanda said… - Hello,
How are you?
Tracy
- At 12:25am on April 26, 2009,
Dotty said… - Hi there,
How's things my friend? I wanted to let you know that we are planning an "Alopecia beauty day" at a boutique in Chelmsford on June 7th as our first official awareness event for our newly incorporated non-profit Alopecia company. They are opening the boutique just for us and we can try on clothes, take lots of pics, and just have fun together. I got at least 40 dress up costumes for the kids. They will look so adorable. We are going to do a buffet brunch at the hotel nearby first and then go to the boutique. I hope you can make it we missed you at the last one!!! I know it will be great!!! Please let me know so we can do a head count for the restaurant reservations.
Love and Hugs,
Dotty
- At 10:09pm on April 12, 2009,
Natalie said… - Hi! Yes, I am graduating this May (insert loud gasp and slight cringe here). I'm so excited, yet am absolutely terrified! I'm applying for internships in India for the summer, but who knows where I will be a few months from now. What are your plans after graduation? I loved reading your profile and especially your blog about shaving your head because I am shaving it all off this upcoming Friday! It's gotten to the point where I am finding myself changing parts of my day in order to accommodate hiding my spots (like I can't go out on a windy day, I can't go swimming cuz too many spots show, etc). So I have decided that I'm sick of letting alopecia control me and I'm ready to LIVE again! :) Your pictures are beautiful and your attitude is inspiring! What kind of wig do you wear? I am getting a full lace real human hair wig next week, so I'm hoping it goes well......Talk to you soon!
Cheers,
Natalie
- At 11:47pm on March 31, 2009,
JeffreySF said… - Hopefully you will be all toasty warm soon.
Jeffrey
- At 8:05pm on January 19, 2009,
Cindy and Samantha said… - Hi there, my name is Cindy and my 6 yr old daughter has Alopecia..I could not help to notice Dotty's comment about wearing a wig. Samantha my daughter wears one and has no issues with it. Please join us and feel free to bring a guest and come anyway that will make you feel comfortable.Please RSVP to me since I am taking care of the confirmation..Cindy
- At 7:26pm on January 19, 2009, Dotty said…
- Hi, just an update for the Boston get together. It is going to be at Vinny T's across from the Prudential at 12:30 on January 31st. There is going to be 30+ people there so I do hope that you can join us. And, please don't think that you will be uncomfortable in your wig. There are people at all stages of acceptance and some gorgeous little ones. Some with wigs, some without. I can't wait to meet you. Can you please confirm that you are going so that we can get a final count. Thank you.
Love and Hugs,
Dotty
- At 8:22pm on January 3, 2009,
Diane said… - Hi there!
Thanks for the friend request! I wish you a happy new year!!
Diane
- At 7:35pm on January 2, 2009, Dotty said…
- Hello there,
I was just sending Lori a message and noticed that you are from Boston. I grew up in Melrose but live in New Hampshire now. My daughter lives in Somerville and works at the Phoenix Newspaper across from Fenway Park. I love your pics and especially your attitude. I wanted to let you know that we are planning an Alopecia get together in Boston on January 31st and we would love for you to join us. We had a very successful one in September and would love to have one every few months. There was about 12 of us who went to the Cheesecake Factory for lunch and then a few of us went to a tattoo convention. We really made quite an impression at the convention and were interviewed by a college newspaper and someone that was doing a documentary. I really hope you consider joining us. I was thinking of having lunch again and then doing something fun afterwards. Let me know if you are interested so we can get a head count. Welcome to Alopecia World and I hope we can become friends.
Love and Hugs,
Dotty
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