Shock, pain and raw emotions...the good the bad and the ugly

I have been losing the most hair ever lately. One shower episode lead to two full handfull of hair plus two brush fulls. It was strange I didn't cry. But...my husband took a look at the back of my hair the other day. He was pointing out where all the spots were. I asked him to take me up to the mirror to show me...I was shocked and devastated. The back of my head looked as though a lawn mower had attacked it...awful. I bawled...I mean just bawled. It was a down to the bottom of my toes bawl where you have no more tears to cry...I can't remember the last time I've done major crying like this. The top of my head is bad. I have a spot the size of a baseball followed with it's little sisters sprouting up everywhere. I am officially hat, scarf and soon to be wig bound. I'm scared at these possibilites, sad about it, and sometimes down right pissed off that this is happening to me!
I am pretty controlled for the most part. I don't obsess in the mirror anymore. Instead, avoidance of looking in the mirror for bald spots has helped me cope. But...I'm getting into the "can't hide it anymore" stage. A stage that you think of and try to prepare for when you first get the diagnosis...it's HEEEERRRE. It sucks. I still have a majority of great days. I smile, laugh, play and go out...life goes on. It's just the anxiousness of preparing to go in public. I was slightly anxious about this when I had hair and now...sucks.
I have a plan in terms of wigs, but I still have the butterfly, sick to my stomach feeling, when I think about going to the pool with the kids...what do you do? Camping? Working out? Going to bed with the hubby? UGHHHHHH. There are solutions I know. Acceptance is key. Most days I'm okay with acceptance...but there are moments...like the nightly routine, or the wind blowing, etc.
I am finding in all this and after even some bad moments that I'm still me, sometimes it shocks me...I'm stronger than I think I am.
Jesus is my rock in all of this although he has heard some nasty comments thrown at him during the "why me" times. I still have gained a better relationship and trust in him that was lacking before the AA hit. He has a plan for me and I am listening. I still will be me regardless in the end...whenever this will end.

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Comment by Jeff W on April 26, 2009 at 11:47pm
Hi Jenn,
So sorry to hear that your hair loss continues. As you know I've been going through this on a very similar timeline to yourself. I have been fortunate to share in your blogs as well as both your frustrations and victories in dealing with this. I am absolutely certain that you will find a way to continue to enjoy all of the things that are important to you in life. The way you've worked through everything so far is admirable shows just how strong you are. Belle of the Ball no matter what!

Jeff
Comment by Erin on April 27, 2009 at 12:02am
I have had so many of these feelings.. oh where to start.. I used to bathe and there would be balls and clumps of my hair all over the tub after, it was heartbreaking. I am so sorry you are so sad.. it is not fair it is true. And you have the right to feel angry and sad and even empowered hopefully.
Your husband will love you. your kids will love you, you will be self concious, I have done this for a long time and still and self concious but you slowly feel better and better and it is normal..
Swimmming... You won't go under water.. at least I can't in my wigs, you will have an old one eventually you can wear and not worry about wrecking it, just pull it into a bun and go.. it will be fine. or go bald, I still only do that rarely, it is all how comfortable you are. Working out.. I work out at home, I agree, wearing a wig is to hot, I quit all sports in high school for this reason, it sucks.
Camping, again use an old wig, they hold in camp fire smell haha. you will adjust. you are strong, we all are.
sometimes it is a joyus thing, for me anyway, not all bad, for me the strentgh the knowing i am more than my hair and am fine without it does outweigh having it. maybe that is just because I have had it for so long. anyway.
i hope you feel better soon, i am sorry it is happening to you. if i can help you with wigs or anything let me know. :)
Comment by Natalie on April 27, 2009 at 12:29am
Hi Jenn- When I was readying your blog, I felt like I was reading a page from my own journal. It saddens me to hear about your alopecia, but please know that you will come out of this on top and absolutely beautiful and stronger than you ever imagined! I literally DREADED showering because of the handfuls of hair that would fall out, and I also tried to avoid looking at my bald spots as much as humanly possible. When my dermatologist prescribed a steroid cream for me to apply on my spots twice a day this past January, I no longer could remain in denial. Looking at my worst enemy every day was enough to throw me into panic attacks. I would cry all the time- in the car, in the shower, at mealtimes. I actually had to go to the doctor to help me deal with my panic attacks- I felt like NOTHING in my life was in my control. When I was trying to describe my grief to my boyfriend, the best way I could think of it was that it felt like I was truly losing a part of myself, or a best friend. I grieved. And after almost 9 years, I have finally accepted it and am the absolute happiest I have been in a very long time. You will get there too on your own time, but I want you to know that you are not alone in your journey :) It is very courageous of you to even write this blog and talk about your emotions- that is really difficult to do, so I know that you will get through!!! Please let me know if you ever want to chat or have any questions :)
Take care,
Natalie
Comment by meg on April 27, 2009 at 12:03pm
I feel as those who have written already... there is no simple answer to make you feel better, I wish there was because I would say those soothing things. The words fear, grief and frustration are the things that we have to go through before there is surrender. This is the rough of it all, what is our attitude as we ride the down of this phase of the life wave. Maybe too esoteric... our life is like the ocean with continual waves (the ups and downs) and surrendering implies that we ride the waves like a surfer not battle them like the drowning man. The attitude we bring toward whatever life wave comes our way differentiates between the surfer riding the wave and the drowning man battling his way to the surface of the wave. It is o.k. to yell, scream, cry, hate, ask why me... but do not sit there too long or you will drown.

My motherly advice is this... wanted or not: 1. Shave your head if the areas are too large to cover. Have the kids help and your husband... there is something about ceremony. Expect to cry a lot since we have attachment. We all have been conditioned to "love our hair". 2. If the shaving off of your hair is too much, and it may be at this time, try some hats. If you have enough hair, put it up in the back with a clip-on-hair piece/wear a fall. You can wear it like this camping, it may be different than you have ever worn it before for camping but oh, so elegant! When I lost most of the back of my hair, I wore scarves, and wigs when I really had to. When I shaved my head and now that I have no hair at all, and I am at the beach, on vacation touring and it is too warm to wear a wig, or at a resort pool, I generally wear a scarf with a sun hat over. When I swim in the ocean it means I am in public so I take the hat off and either swim with a scarf or bare headed. Now at a resort pool, I always wear a scarf in the pool... too many eyes even for me. We have an in-ground pool at home, so I am as I am but I always wear a big sunhat... vain enough to not want wrinkles! Actually, my eldest son (who is 23) bought me a great vintage hat from the 30's for my birthday to wear around the pool. 3. If you shave your head, get ready for the winter indoor hat... or the funny wig since the slightest breeze is felt and can make one cold all over. Working out, again wear a scarf like a dew rag ( not sure how it is spelled) or when and if you shave your head, just take your wig off and work out. I have been hugged, told I would be prayed for, and even congratulated for working out in my condition... I never set them straight unless they ask more. I thank them and bless them for their thoughtfulness! Generally one of my friends or the instructor tells them. Recently after gaining ten pounds, when a woman approached me in yoga class about my condition, I instinctively went into a long explanation on how I thought this weight gain was due to me starting menopause or just due to the long winter and eating things I generally don't eat ... you get it. 4. A Truism: Sex is sex with or without hair. See what your husband thinks about it... wig or no wig?

Loving ourselves as we are is a never ending story unless we just do it. Now,I give great advice and sometimes I even take my own advice and feel just fabulous, sexy, and all of that, but there are the other times when I doubt all of it! These are the days I fight the wave and start to drown and everything around me capsizes as well... so I find my surfboard and challenge myself to the next wave because if I am sure of anything it is that the next wave will come! Be Blessed.
Comment by Joshua on April 27, 2009 at 1:04pm
Hi Jenn,

I'll probably be repeating as what others have said earlier in their replies to you. I am sorry to hear about your alopecia. Yes it is true that we will have our ups and downs, and I have some very down times...probably even too much for a guy but I am glad that I was never alone eventhough I do still feel lonlely sometimes.

I do hope that alopecia will go away for you just as much as the "pain" it has caused but I am inspired and encouraged by the strength of you faith...! Thank you for your inspiration despite a cloudy day for you.

Joshua
http://joshuablogspace.blogspot.com
Comment by Paula on April 27, 2009 at 7:53pm
hi jenn, i'm with ya. i have a lot of good days, but every few days i just get so sick of wearing this stupid hat! it can be so frustrating. hang in there - you are doing great.
Comment by Stephanie on April 27, 2009 at 8:25pm
Hi Jenn
Sorry to hear about what you are going through. Reading your story brought tears to my eyes as I know what you are going through. I can't say I have any new words of wisdom for you because I still struggle daily with this. I am surprised though that when I finally had to shave my head, I didn't cry. But I still go through the "why me" phase. I am single and would LOVE to get into the dating scene, but who wants to explain this to someone, and who wants to be dumped for being bald? Just try to stay strong. You have a family who obviously loves you. Hold onto that--its priceless!
Comment by Nicole Mosley on April 27, 2009 at 8:58pm
I can't write because I'm crying right now Jenn. This is EXACTLY what I went through, same thoughts, same emotions, same issues, same way my hair fell out. Be strong and I am praying for you, for all of us!
Comment by Jennifer Krahn on April 27, 2009 at 11:04pm
Thank you all for your encouragement. I'm sorry to vent. I'm not one to usually share my emotions with anyone, let alone complete strangers. I've never experienced such a rollercoaster of emotions that this aa has brought about. There has been nothingI haven't been able to control in my life in some manner thus far...this is the first. This site and everyone on it has brought nothing but support and comfort to me. I visit it often to look at how everyone turns out to be so beautiful and strong both on the outside and inside. It gives me nothing but hope and a positive outlook as I sign out each night. Thank you.
Comment by Tuesday on May 3, 2009 at 6:57pm
Jenn - just wanted to say you're not alone. I have alopecia universalis - it's been almost 9 years. Everything you describe I can relate to, as I (and many others here) have felt similar emotions as our hair has shedded. I had all those questions you mention (camping ,swimming, working out, sex etc. ). You know - it's really really true - time will pass and you will grow stronger and the pain, the anger, the fear and frustration - not to mention the questions about the unknown - it will all heal. I still struggle with acceptance but the intensity and frequency of my bouts is not the same as it was when my hair first fell out.

I used to wear wigs all the time. I still wear them as I feel (it's fun to have pretty hair) but I also wear headscarves as I feel. The scarves seem to be easier when it comes to sweating, swimming or just being active (in my mind). I still have pangs of jealousy when I see some women obsessing over their new hair cut or fluffing their long curly hair. But - life goes on. I am glad you mention Jesus as your rock - that relationship will serve you well and much longer than your hair! :0) I'm going to sound trite but I have to say it if only to give you a bit of light - I feared so much losing my pretty hair and in some ways I'll always mourn that part of me. But - the alopecia has also given me strength and insight and compassion. Wearing scarves out in public - has opened so many people's hearts to me. I have a lot of people share their own personal stories - they see the head scarf and figure they can let down their guard. It's really been amazing. But in the meantime, I wish you all the best and hope the tears grow less in the coming months. :0)

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