Alopecia World
Where acceptance is all there is!
Guilty Crack Head
I have had Alopecia Areata for about 20 years. The first time it fell out I lost most of my hair, eyelashes, and eyebrows. Then some grew back, but not all of it. A few years later a friend who was a nurse told me to try P.U.V.A. which I did and to my surprise all of my hair grew back 100%!!! Of course as you all know there is no cure and when I stopped the treatment my hair would start slowly falling out again, but it usually only gets to about 30 - 50% bald spots and it would take years before I would have to go into “hat mode”. So every 6-8 years I would take this treatment and I would get a reprieve. I could go out into public and not feel like a freak. I was a “normal person” again whatever that is.
I don’t know which is worse spending your entire life being 100% bald with AA and coming to grips with that or taking these treatments only to go through the depression of losing your hair all over again. It was like a rollercoaster of emotions and I was a crack head waiting for my next fix…
My hair is just starting to get bad again so I went to the doctor to take the MAGIC treatment again and I was told that they don’t use this treatment any more because of the threat of cancer. I said “Doc I can give a rat’s butt about skin cancer” and so he said he would give me the treatment, but it’s really hard to find the drug that is prescribed with this treatment. So off I went searching the internet Canada, Mexico, the US. I could not find anyone that carried it. Finally I went to the drug manufacture who said they stopped making it Nov09, they say because of a particular ingredient that they can not get. Here I sit twitching without my fix…I’ve been kind of depressed since then. I don’t think I’ve had a date in about 3 or 4 years. I just loose my confidence and it makes me kind of insecure. I try to keep a positive attitude about the whole thing and make the best out of life, but it just hard some times. Also about 5 years ago I was diagnosed with Crohns Disease and since then I have had psoriasis and this last year or so what seems like fibromyalgia, but that last one is undiagnosed. (You would think I joined the disease of the month club or something) lol
Then once in a while I feel guilty because I read posts about these little kids with AA and also when I was younger I used to do charity work for United Way, things like Meals on Wheels and one day they sent me to a mans house who was a invalid so I could take care of him for the day and his wife could have a brake and get some shopping done. Well, here’s a guy who can’t move from the neck down. At night we had to stuff pillows all around him because if he rolls over he would suffocate and die! You don’t want to know how he went to the bathroom… I lasted one day at that job. It takes a special person that can do that and I aint it! Anyway sometimes I think what he would say to me, something like “Oh you have some hair loss and some autoimmune problems. Isn’t life tough! I can’t walk or hug my wife! I can’t go to the bathroom by myself! I can’t even use the remote control for the TV. It would be easier to say the things that I can do... I can stare! I can wink!”
So I guess I’m doing alright
Signed
Guilty Crack Head
Comment
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Comment by Clara S. on February 21, 2010 at 7:30pm
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I'm think i'm also not ready to be happy with alopecia club but I'm trying to just not let it affect me and my personal life. I guess like many here, for me, I'm not ready to let Alopecia stop me from going out there to enjoy life. There are days where this can be really tough! But I always make it through somehow. I'm still undergoing treatment - DCP to be exact but am not sure if it's really working except giving me a very itchy scalp! Oh and I still see the PUVA treatment being carried out here in SIngapore but am not really sure what that involves.
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Comment by Mary on February 18, 2010 at 6:48pm
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Thanks, Devin. Yes, I did see those Scrubs episodes...really good.
Again, I don't think I'll ever be happy to have AA...I'm just happy to have the health I do have.
Hang in there.
Mary
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Comment by Devin on February 18, 2010 at 6:45pm
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Thanks Joy! I’m going to send you a friend request so we can continue our Fibroalopecianize…That’s the language of the Fibroalopecian in case ya didn’t know :)
Hi Mary I’m glad you have grown so much. It’s an inspirational story. I hope I didn’t insult anyone who is actually in the happy to have Alopecia club. Because I’m all for those people, God bless em! It’s kind of like when I was young I use to notice that a lot of female friends would say a lot of hurtful things if they saw a heavy gal sporting a two piece bathing suit on the beach. I can remember the first time I heard that and thinking that’s not what I see. I see the only secure women here who is confident with who she is. I not only applaud the people in the “happy to have club” I inspire to be someday. The same with the people going totally bald in public, god bless you! I’m just not there yet! I do envy them though. Oh no now I’m the Guilty Envious Crack Head. lol Thanks for your comments.
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So well said, Cheryl.
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Comment by Cheryl, Co-founder on February 18, 2010 at 10:43am
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Hi Devin, like Mary mentioned, I don’t think there is a “Happy to have Alopecia Club”, more of “I am ready to move on club”. When I stopped trying treatments, my mom originally asked me why I was “giving up”; I responded that it was not so much giving up as it was moving on. I was tired of the constant worrying, comparing myself to others, wondering if and when it was going to grow back, what are others going to say and I guess I more surrendered to alopecia.
At first I sank, but then I rose back up again. I think it is that feeling that we are describing. Putting alopecia behind me and just experiencing life again, was so refreshing. Everything that I thought or assumed at this point was then challenged and a lot of it dispelled. The doubt that swirled in my mind such has; Would anyone ever find me attractive, who would want to marry me now, how am I going to work, are my friends going to be embarrassed to be around me. My proof is in the people around me. My employer that I worked and my friends supported me when I made the decision to no longer cover my head. My husband rj met and married me, while I had alopecia areata and was no longer wearing head coverings. I know that rj adores me, finds me beautiful and is proud to walk down the street with me. Granted, we are responsible for the kind people we allow in our lives. But, eventually I realized that nothing in my life really changed. I continued to work, love and be loved all with or without the hair. I think it is that realization, that one way or another nothing has to change that makes you sit back and “appreciate” alopecia.
It is that special moment that you more than “know” what acceptance is, you have actually “experienced” it.
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Comment by Joy on February 17, 2010 at 11:01pm
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you still have a wonderful sense of humor!!...4 auto immune...OK YOU WIN!!!!! ive had my medical stuff a long time so there are days i dont even think of it but what you said was so nice. if my hair doesnt grow back i can get a wig..no problem! i like what you said to Melissa. your point....however you feel is ok. in my opinion accepting alopecia is a process and wherever you are is ok!!!! Micheal J Fox is awesome...have to find those Scrub episodes!! Peace to you fellow Fibroalopecian!!
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Yeah, Mary M.J.Fox is inspirational and I don’t know if you ever watch Scrubs, but he did a couple episodes in 2004 where he played a doctor with Obsessive–compulsive disorder. Funniest thing I ever saw.
O.K. Joy you have two immune disorders I have four…Lets pick up the pace girl! Haha I’m just kidding. It’s great to here from a fellow FibroAlopecian-hey I just invented a word! That sounds like an Aliens name, anyway I don’t think a hair piece is for me, but thank you so much for your support and I hope your pain goes away and your hair grows back, but until then you have been a Joy…Joy.
Melissa thanks and yes it seems like everyone really liked the “but I’m just not ready to join the happy to have Alopecia group yet”, but my real point was that it seems like everyone with this disease is either desperately searching for answers or at piece and I’m walking that tightrope in between. Gorgeous girls in your photo by the way.
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Comment by Melissa Harris on February 17, 2010 at 8:45pm
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Awesome Blog!! Thanks for sharing! It's nice to read something and totally relate to it. You are right, life could be a lot worse for us. It's so hard to come to terms with that sometimes. I go back and forth. I totally agree with you on the part you mentioned about what's worse, shaving and moving on or getting these treatments and dragging it out?! I'm punishing myself with the treatments now, but who knows what tomorrow will bring! I wish i could just have my hair! LOL! Well, guess it's wishful thinking! Thanks for the insight!! Melissa :)
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hey Devin,
i dont think you over sold anything. you were just being open and honest..i also have 2 auto immune disorders so i can sympathize with your feelings. i have fibromyalgia and another one none of you probably have heard of. it is hard dealing with pain day in and day out but manageable and then add hair loss and yeah we will have bad days. i think theres a concensus here most of us arent in the happy to have alopecia club but it doesnt mean we sit around always focusing on it either. its ok to say something depresses a person because it is understood that life still goes on despite that one thing you may be depressed about...of course just as you said!!! just as there are wigs for women there is also a hair system for guys that can start you out with hair that looks like it is just growing and each time you go in the system can be changed to finally get to the point where your hair is full enough for your liking.. its called Virtual Reality hair. its not widely known but i feel if women can have info about and wear wigs guys should know theres something good out there for them too and in telling you thats my way of offering support should you chose to look into it. i dont sell it or have it myself but i know a man who got it and it gave him back his dignity and boosted his self confidence just like women have happen when they wear a wig. look me up and ill be happy to give you more details. in closing i just wanted to say i hope your health problems give you the least amount of trouble from one pained filled person to another and you know that alot of us here arent in the happy to have alopecia club so you're not alone but im sure you have laughter and joy in your day despite your pain and the hair loss just like i do!! Gods richest blessings to you and everyone here.
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I've mentioned this elsewhere on AW recently, but I just finished reading Michael J. Fox's second book, which deals with his attitude towards his Parkinson's Disease. I found the book really helpful, and I'm going to get the first one now.
If you didn't see my earlier blog about an interview he did, here it is:
http://www.alopeciaworld.net/profiles/blogs/inspirational-words-from
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