For the last 9 months I've been living in denial that my alopecia may be getting worse, progressing from Areata to totalis or universal (These are the 3 my Dr and many dermatologists have told me my case could progress to)

Maybe I should restart. I've been away because my lovely son has become mobile (crawling and assisted crawling) and most of my day is chasing him around, making sure cupboards are locked and what not. It's a wild ride! For those who have read my posts before and know my mother is no longer with this world, I would just like to say, I think she would be so proud of her grandson! How I wish she were here! (Although, she'd spoil him rotten.. haha!)

Anyway, last April and, I think July? I finally got some referrals to new dermatologists to discuss future medication. I asked about this new allergy pill thing, that kind of reverses what the immune system does? I can't remember, I think somebody messaged me. Anyway, the 3 Dr's I saw all said that they could not prescribe me with this new medication because I was jumping to conclusions, my hair loss is not alopecia, but post partum hair loss (Really? Because I've had this since I was 3!!!) So they said I had to wait until a year after birth. Now that that has happened I've been trying to get an appointment with my doctor, but her schedule is a little chaotic in the winter so it's been difficult. She tried to get me in to see my previous dermatologist, who was so positive and just really great. When I was getting the Chortozone injections we'd take breaks (often because I was going on holiday anyway) and when I'd get back my bald spots would be getting severe again, but he kept positive telling me about research for new medication and hoping we could stop the injections soon. Then I got pregnant and had to stop getting the injections and eventually stopped seeing him altogether in preparation for the baby. Then got busy learning to be a mom and now here I am. Last time my doctor tried to get me to see my dermatologist, she was told he was no longer seeing patients, however one of the other dermatologists I spoke said otherwise. I have I feeling my doctor called the wrong dermatologist. If you are in Calgary and area, you may know him, Dr. Todd Remington. He and his father share a building, one half for laser surgery and beauty mods and what not, the other for Todd and his dermatology practice which INCLUDES alopecia patients. Now, to my most recent update...

My son was down for the count, to bed sleeping like the dead (and most definitely NOT like a baby!) and I was bored. I'd read I don't know how many pages in my book, and needed a break, tv was boring, my house was actually respectably clean for once. So I went to practice make because well, I never wear make up and am definitely out of practice. So I was putting the final touches on, throwing on some mascara when I noticed half my eyelashes are missing. There is almost nothing on my bottom lashes. Now, I know it doesn't seem like that big of a deal and I'm just being a baby and should grow up and shut up!
But I'd dealt with my hair since I was 3. That had never been traumatic or anything for me because it's just who I was. All I'd ever known. Then my eyebrows went when I was about 12 or 13, and I didn't notice until somebody whom I thought was a friend pointed and laughed about it (I think I've mentioned that before) but my eyebrows had been blond before and barely noticeable so, while I was a little shaken and sad about it, I got over it eventually. Most people don't realize until I point it out (mostly when they stare and I go all defensive). My eyelashes however, have always been dark, thick, and long. People ALWAYS comment on my eyelashes and now I don't know... I don't know if anybody noticed today or even how long they've been gone for, but it was quite a shock... I noticed this summer that I'd gone a few months without shaving my legs, and only shaved a SINGLE hair the other day. My armpit hair grows, but it's thin and patchy. Like I said, I haven't had eyebrows in about 7 years or so I've gotten used to some things, and been elated about others (Trust me though, if growing leg hair meant I could have my facial and head hair back, I'd do it in a split second!) Now that I'm losing hair everywhere, I feel a little sad inside. I hate brushing my hair and seeing how much hair I've lost - I avoid brushing my hair sometimes and just let it get knotted and messy to tie in those loose hairs and keep it a little thicker a little longer. Knowing there are people out there that have universal or totalis, I feel kind of selfish being all down and out about half my eyelashes. But I think it's not just that, it's that PLUS everything else falling out too. It's wondering, what if my doctor did call Dr. Remington and he really isn't alopecia seeing patients anymore?

For my 21st birthday this year I've asked for tattoo eyebrows. My daddy gave me a choice, I could have something small for my 20th birthday, small present for Christmas, and if I got my learners a car (used obviously) or a 'medium' present for my birthday. I decided to say no to anything but a big 21st birthday present. I had been going back and forth between a couple new kitchen appliances and eyebrows. While not having eyebrows doesn't really BOTHER me so much, I do miss them. And I suck at drawing them on. My daddy isn't big on tattoos, but he knows it's cosmetic and something that would be cleansing for me. It's just something that this disease can't take away from me forever. While I know I could just sit here for however long and let my hair fall out completely and either get a wig or hair implants (although, I think you need other bodily hair for that? Of which I have very little) implants look weird, at least the ones I've seen and don't want to chance a botch job. Wigs feel too heavy, require too much maintenance for me and are itchy.

Despite all this I'm trying to stay positive, or will try to be positive again soon, once I get over the shock of the eyelash attack. I hope that if Dr Remington isn't seeing alopecia patients anymore that I can start seeing somebody just as amazing, just as positive, just as encouraging. I did get some injections last summer and spring, but noticed no progress happening just more hair loss. A lot more hair loss. This has happened before. My body either begins to reject or become immune to whatever medication I'm prescribed or if a long enough break is taken, it stops working and I either need a stronger dose or a change in medication. I'm hoping I can find something new.

I know that the few times I find myself on here I spend most of it complaining or whining about my own problems, but I don't know anybody near me to share what I'm going through with. I can talk to my friends but they can only sympathize so much, they aren't going through this. I'm so happy I found this place, even there are few people who reach this blog, I'm glad I have at least somewhere to vent in peace. Facebook most of my friends and "friends" get annoyed with me going on and on and well, that's really the only other place I go. This website feels like a place where, when I get to wound up with alopecia, and I can just unwind, let it out and know that tomorrow is another day!

For those who get this, thank you for taking your time to read about my problems, any advice or sharing is welcome. If anybody is in the same area, I'd love to meet up and maybe talk about everything in person? Or just on here in PM's! Thank you for listening.

Views: 252

Comment by Tallgirl on January 27, 2012 at 9:25am

Dear, I have been there. After AU and being told by some very professional dermatologists that at my age (then in 40s), after the degree of hair loss (AU then AT, after years of AA off and on), and the number of years of loss on top, that it was unlikely I would grow hair on my head again. You know, they were right. I am 59 now, and have been saving on stress, Guinea Pig feelings and out-of-pocket money for appointments, shots and creams for about 15 years. That means money available for nice wigs and make-up. You are right in that only other alopecians get this. You are in the right place to talk...and I think you need to also start doing the self-talk about the realities of alopecia. Also see www.naaf.org to find support near you. Good luck!

Comment by BTB (John) on January 27, 2012 at 2:54pm

To say how your feeling is not whining its just what it is trying to let someone who should care and understand why you are in the state you are in. When we are like that we don't want advice or pat answers we just want someone to listen. I don't have AA but have learnt if I just listen to my partner and I mean really listen and hear what she means and not just hear what she said, helped Pat feel so much more appreciated. This should be a place to say what are feeling and not be judged for it, there are many here who will listen and support,fantastic post showing honest feelings. John

Comment by Davis McConney-Goode on January 29, 2012 at 12:23am

Tallgirl, Thank you so much. Luckily my dad's healthcare covers most of the costs of medications and I don't like wigs so not a lot of saving involved. And luckily because I'm still in University I'm covered by his healthcare! I have had some people come to me with very mild almost non-existent alopecia (more of just thinning hair than actually hair loss like what I've seen on here and experienced myself) so they can't really understand what it's like.

John, thank you. Sometimes I just get so worked up about everything, and not having a special someone to vent to this is the only place to go! And sometimes I do feel like I'm whining, but I just need to vent!!! Your partner is very lucky to have you!

Comment by Anne Vanderlaan on July 4, 2012 at 1:15pm

I read your story and I understand how you feel. I so wish I could just have eye lashes. I have had the tats for my eye brows and around the eyes but it just fades off and you have to have it redone. The first time I went to a real tat place and talked the guy into doing it. His tats have lasted the longest. I have then paid out of the nose to have them redone but they just fade. I have found an eye liner that will last about a day that is water proof.I often have to talk to myself and tell me how beautiful I am. I try and stay positive.
I hate explaining why I have lost my hair.Little girls always like to ask me why I don't have hair and I now tell them I was a bad little girl and did not obey my Mom.The Moms always look at me and whisper thank you. Bratty kid haha. We have to have a sense of humor.

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