Alopecia World
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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
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Comment by Dominique Cleopatra on February 17, 2010 at 2:16am
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It's cold comfort to feel better because someone else appears worse off, but it's always important to keep everything in perspective. Did you read the post Susan--a nearly life long alopecian and successful wife and mother--recently wrote regarding not using hair loss as an excuse for why one's life is unsatisfying.
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Comment by Devin on February 17, 2010 at 7:25am
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I did read her post and I agree with what she says in theory, but my problems have never been what people think about me its more what I think about myself and I know its just hair, but I’m just not ready to join the happy to have Alopecia group yet. Although talking about it and reading other peoples posts really helps. Thanks for your comments.
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Comment by Robert on February 17, 2010 at 9:38am
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Hi Devin
I've been dealing with AA in various forms for around 18 months now. I refuse to accept it or be "happy" to have it, and I can definitely relate to your comments about needing my next fix of treatment. I didn't realise that PUVA had such serious side effects. It has never been offered as a treatment to me, but I would always have said yes.
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Comment by Tracey Tiznor on February 17, 2010 at 6:15pm
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Disease of the month club.......Hee Hee Hee I understand Devins story ,you went the medication route looking for the answer and im addicted to the wigs as the answer . I dont leave the house unless im in complete drag (Eyelashes, wigs ,and eyeliner) . By the way i tried all the medicines before i decided to fake it!!!!!!!
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Comment by Mary on February 17, 2010 at 6:52pm
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Great comments, everyone. I'm certainly not in the Happy to Have Alopecia Club - I don't think I'll EVER be! But, I'm firmly in the Happy to Be Basically Healthy Club!
More and more friends and family seem to be getting cancer or becoming limited by injury or other illness or age-related problems. Even with no hair, chronic TMJ pain, sleep apnea, and a few other nagging aches and pains, I'm able to do the things I love to do. Hair would be wonderful, but I'll take the hand I've been dealt.
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Comment by Tiffany P on February 17, 2010 at 7:05pm
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I am also not ready to be in the "Happy to be alopecian club" but like others have said when i go to work at the hospital i see so many people have so much worse that even though i'm not happy with my situation i can adleast function. I also have psoriasis and tmj and those are a pain in the butt in itself. But as people are losing legs, their lives and there minds i take comfort that if being bald is the worse that can happen then so be it.
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Thanks for your post Robert and you have the right to feel any way you want brother!
Susan I know exactly what you mean about “coming here levels the playing field” I feel like one of the little people from the wizard of Oz movie. Back in the old days they said when all of them got together to make that movie they might have been 30,40, or 50 years old from a small town and never had meet another little person in their whole life and all of a sudden there are hundreds of them. That’s how I feel! I’m in the world of the bald. I’m with my Peeps!
I really don’t think that this is the end of the world. I guess I over sold it with saying I have been depressed since then. I’m just a studier of human nature and over the past few years with all my new diseases I wake up in the morning, having to take six pills that day and for the rest of my life because of Crohns disease, I begin to put on the lotions and liquid solutions for psoriasis depending on what part of my body its at that day, I then stumble to the shower with (some days) chronic pain from fibromyalgia that can be so severe that I wont be able to sleep, a good day can be 4-5 hours, but you know what every day I put on my happy face and go to work joking and happier it seems then most. However I find out that I will not be taking my P.U.V.A. treatments like I thought and that’s what depressed me??? I guess it’s like what they say about people can be taking Chemotherapy and worry more about the hair loss then the life threatening disease. Anyways thanks for your support Susan it was great to hear your comments and I will work on it.
CaliforniaGurl I’m glad I made you laugh, it’s my medicine and don’t kick and scream just let it happen. Just make sure to save your pennies just incase there are fees…I wonder if they take Visa?
Tracey I guess I can try the complete drag way, but something tells me you can pull it off a lot better then me:)
I have to say Mary your comment sums it up for me. If there is one thing I have learned from AA is appreciate what you have because it might be taken away from you.
Amen Tiffany P I can still run and play tennis. Life is Good!
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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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Comment by Joy on February 17, 2010 at 8:14pm
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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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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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