Alopecia World
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Am I still an Alopecian????????
ok, I have had Alopecia Universalis since August 2001....not a hair from head to toe! Last March 2008 I started methotrexate for my Rheumatoid Arthritis, and 6 months later (sept 08) my hair started growing back, I now have what looks like a cute pixie cut, and was able to stop wearing my wigs in April. I have to shave my legs again, I have almost all my body hair back except for under arms and bikini line( yeah) I have eyelashes (sparse) and eyebrows. I have on tiny spot of AA over my right ear, but other than that my hair is filling in and getting longer. People that didn't know I wore wigs, have been telling me what a cute hair cut I have for summer. LOL....HOWEVER I now have an identity crisis------ am I still an Alopecian?? After living bald for 7 years, it is almost just as weird to now have hair. Believe it or not, once I accepted (tolerated) my condition, I felt unique. Now I am just another person with hair....LOL...
Yes it is nice not to have to bother with wigs, especially in hot weather, and going swimming etc. Or trying to find a bandana to match my clothes. However now I wake up with messy, greasy hair, I have to wash everyday and some how sort of try to style this fine baby hair. It came in very dark and drab. Nothing like the beautiful hair in my freedom wigs. My daughter gave me some highlights (left over from her highlight job) I do like it better now. But I must tell all of you that it is sort of bitter sweet. I never thought I would have hair again ever! and if it all fell out again tomorrow, I know I would be ok. Hair is not all it is cracked up to be. I had learned to live as a confident bald woman, who's husband and children loved and made feel special and beautiful. People admired my strength dealing with AU and always having a smile on my face. I felt strong and liked to help and encourage other people in difficult situations. I loved talking to other "bald" people and understanding exactly what they were feeling. But what am I now?
Has anyone else ever gotten their hair back after 7 years? and kept it? Do you think it will stay, or should I get ready for it to all fall out again? I feel like I shouldn't be on this site anymore, now that I have a full head of hair. I was always jealous to hear or read about other people who got their hair back, and now here Iam.
Thanks for listening, and if you have any advice, I would love to hear from anyone.
Thanks Kim Culberson
Yes it is nice not to have to bother with wigs, especially in hot weather, and going swimming etc. Or trying to find a bandana to match my clothes. However now I wake up with messy, greasy hair, I have to wash everyday and some how sort of try to style this fine baby hair. It came in very dark and drab. Nothing like the beautiful hair in my freedom wigs. My daughter gave me some highlights (left over from her highlight job) I do like it better now. But I must tell all of you that it is sort of bitter sweet. I never thought I would have hair again ever! and if it all fell out again tomorrow, I know I would be ok. Hair is not all it is cracked up to be. I had learned to live as a confident bald woman, who's husband and children loved and made feel special and beautiful. People admired my strength dealing with AU and always having a smile on my face. I felt strong and liked to help and encourage other people in difficult situations. I loved talking to other "bald" people and understanding exactly what they were feeling. But what am I now?
Has anyone else ever gotten their hair back after 7 years? and kept it? Do you think it will stay, or should I get ready for it to all fall out again? I feel like I shouldn't be on this site anymore, now that I have a full head of hair. I was always jealous to hear or read about other people who got their hair back, and now here Iam.
Thanks for listening, and if you have any advice, I would love to hear from anyone.
Thanks Kim Culberson
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Comment by Jenna Mills on June 24, 2009 at 3:36pm
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You mention arthritis- have you tried going n a gluten free diet? Have you been tested for celiac disease?
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Comment by lynne on June 24, 2009 at 5:12pm
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wow wat a great story, i am so pleased for u, i lost my hair in april and have hair growin bak already, i havent gotten used to havin no hair n dont think i ever could, i cant wait to the day i can go out with out a bandana or wig on, but u sound like a very strong person who could deal with havin hair or not, anyway congrats to u, hope ur well, x
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Comment by Kim Culberson on June 24, 2009 at 5:57pm
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Thanks everyone for your replies. I'm not holding my breath that this hair is here to stay, but thank I will enjoy washing it for now..LOL..
Jenna- it is funny you mention celiac disease, because I do seem to have a problem with wheat. Belly aches etc. and my liver function test came back out of whack with quite high numbers -150 normal is 30. When I researched it, I did come accross the mention of celiac. I will have to check it out...Thank you.
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Comment by Nikki Mans on June 24, 2009 at 6:47pm
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i beleive your still a alopecian. i am and i have lost all my hair and its growing back(thank god!!)but alopecia will always be a part of me and it will always be a part of you!!!
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Comment by Mary on June 24, 2009 at 7:32pm
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Wonderful story, Kim! I think you're still an Alopecian. It seems like this disease is so unpredictable that you'll never know for sure whether your hair will stay. Please stay part of Alopecia World, no matter how much (or little) hair you have!
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wow. you guys are great.....yes I am still proud to call myself an alopecian! We sure are a special group of strong people! I don't get much time to spend on line....Farming is a never ending job!
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Comment by Joshua on June 24, 2009 at 9:30pm
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Hi Kim,
Once you're an alopecian, you'll always an alopecian. To me, the alopecian status is not defined as how much or how little we have on our body. Being an alopecian, it a journey/process of life when we redefine our life values and priorities, simply just without hair. Generally, people see people from the outside in and alopecians see people from the inside out. As you have mentioned (so as others have replied), there are certain experiences whether physical, emotional or spiritual that once an alopecian has gone through, all these will never revert back (or be forgotten) even if that person recovers completely from alopecia areata.
However, some people who recovered from alopecia chose to cease being an "alopecian" because of the bad experiences, thus even to a certain point where good experiences, relationships are often being "abandonded" rather than "forgotten".
In short, it is a choice that people make. For you, I am sure that you want to retain all the good experiences and pay all these forward to others through support, awareness and friendship. For that, once you're an alopecian, you'll always as alopecian. Thank you for all your continous support.
God bless
p/s: If I have to abandon my friends here and also the support sites once I have all my hair back, I may as as well vowed that my hair should never return.
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You are so true! Talking to everyone on this site has opened my eyes to the fact that hair or no hair I am a different person because of what I have been through the last almost 8 years. The old saying that God will not give you more than you can handle is what has helped me keep a positive attitude and when I pass from this life I want people to remember me for my strength and how I used this to help others who found themselves in difficult situations.It is amazing that you mention "paying it forward" I just spent 4 days driving to North Carolina and back (1100 miles each way) and the last movie I watched with my 12 year old son in the back seat of our Avalance was "pay it forward"
Thanks again everyone "I am ALOPECIAN FOR LIFE" and proud of it!
talk to you all soon
Thanks again Joshua
Kim
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Comment by panuelo girl on June 25, 2009 at 6:40am
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I don't know what I'd do if my hair started growing back! Good for you...enjoy while you can. As for the alopecian question, I say YES YES YES, always an alopecian. I ran a marathon in 1999 and I'm still a marathoner even though I can't run around the block now. Addicts are still addicts even when they stop drinking. Even in remission, cancer survivors retain the title. With alopecia, I think the identifier comes from having some sort of gene that predisposes us to hair loss (IMO)...and we'll always have that, in good hair times and bad hair times and no hair times. So, yes, I think you will always be an alopecian!
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Another question: I'm no longer AU, but I don't know what to say I have now. After a year of being completely AU - not a hair anywhere - I've begun to grow back hair but ONLY on my face. I have some eyebrows, eyelashes, nose hair and peach fuzz. It's slowly spreading to my whole face, but not a single hair on my scalp or anywhere else on my body.
So, I'm not AU, but I'm not AA or AT? Oh well...I'm an Alopecian.
Anyone have any experience with this kind of regrowth pattern? It's kind of messed up my emotions.
Mary
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