Sunday, June 7, 2009

My woe is me post

Please bare with me, I need to vent and I need to whine.....

I mentioned a few posts ago that I had had 2 biopsies done on my scalp because I have been losing hair, particularly in the front bangs area, for the past almost 3 years (since Ella's birth.) I had been told be a couple of different dermatologists that this was simply from stress and that my hair would come back. Well, after 3 years that is not the case, and I found a doctor, actually a PA, that took me seriously. So on Monday I got a call from the nurse with my results, she tells me I have "non-scarring, non inflammatory alopecia." Holy shit, I FREAK out. Really I just start laughing, you know the I'm laughing hysterically because it is the only way I can prevent myself from bursting into tears.
I remember watching a show on TLC years ago about children with Alopecia, they were totally without hair on their scalps. So, immediately I start searching the Internet and find out that there are several types of Alopecia. So, I calm down a bit. There is a form of it that has a possibility of new hair growth by getting steroid shots into the scalp, so I prepare to go to my appt on Wednesday and demand shots to my head.
So Wednesday comes. I take Ella to school from 11 to 1, then head to my appointment with Ella in tow. The nurse takes out my stitches from the biopsy. I ask to speak to my PA and she says he isn't there. I tell her why I want to talk to him, probably with desperation in my voice, and she goes out and gets one of the doctors to come and talk to me. Well, apparently Alopecia simply means hair loss. I have premature Female Pattern Hair Loss. Meaning that I am not a candidate for shots and basically my only hope is to try Rogaine. There is no pill for women. I really freak out. The doctor asks me if my parents have thinning hair, um NO. He says it is hereditary, hmmm. I inform him that I AM 29 FREAKIN YEARS OLD. My hair should NOT be coming out. He also informed me that this is often kick started by a traumatic/extremely stressful event, aka Ella's birth/diagnosis. But the kicker for me was that the doc informed me that the follicles that were biopsied had thinning hairs and that the hairs were in the catagen stage (the resting stage) which is what they are in right before they fall out. Fabulous. I of course break down and start crying in the exam room. He attempts to comfort me a bit and then books it out of there, not before saying that I can come in and to talk to them anytime, why so they can tell me there is nothing they can do? Urgh.
I know that it is not the end of the world for my hair to fall out, I really do. I am not sick and I am very thankful for that. HOWEVER my hair is all I've got. People have commented on my hair my entire life. I vividly remember ladies coming up and touching my hair when I was a little girl. I was told probably thousands of time as a little kid "has anyone ever told you look like Annie???" My elementary school music teacher would stand at the entrance to the school every morning and every morning when she would see me she would begin singing "The sun will come out, tomorrow...." You get the point. Of course it was mortifying, but it's all I've ever known. I still get compliments on my hair quite often, "Is that a perm? I would kill for those curls." "Is that your natural color?" etc. I even got "most recognizable hair" in high school. I really am not vain about it, it's just the way it has always been. I'm not very good at accepting compliments and of course blush profusely. I have horrible self esteem, but at least I know people think my hair is beautiful. It seriously is all I have (besides extremely beautiful kids : ), I don't have a nice body, I'm not exceptionally talented at anything, the thought of not having my hair is so depressing.
So I have started the Rogaine, it is a bit smelly and I have to put it on twice a day, it makes my hair hard (it's applied like a mousse) and a bit greasy looking. But I'm doing it. I'm desperate. I've searched and found vitamins that are supposed to help so now I am loading myself up.
What really bothers me I guess is when is enough, enough? I have had a good life, I have a great family etc, but I have had some really rough spots throughout there. I feel like my life is just finally calming down. Ella is getting older, all of her medical testing is tapering off, she is doing fabulously, my accepting and understanding of her having Down syndrome has become more normal to me (if that makes any sense.) Hunter is doing great. Chris and I did a lot of work on our marriage this past year and are doing better than we ever have. We bought our first home. I just got the job of my dreams. And then this. It's just always something. I can't ever just feel secure and enjoy life. (oh yeah have I mentioned on here that I am medicated for depression and anxiety, not really helping...) I feel sometimes like I have done something to piss off God, that he is testing me and obviously I must be failing because it happens over and over again. It's just how I feel, when you have so much happen in the past oh 17 years you can't help but wonder what you have done wrong to deserve all of this.
Anyhow, has anyone out there experienced hair loss????

Well, enough of that. I'm heading to bed. I am starting my job in the morning and am really excited about that, so that's a good thing. If you made it this far, thanks for reading : )

22 comments:

Pam said...

Awww....I am sooo sorry about your hair, and I so know how you feel about it **always** being something. Sigh.

I just wanted you to know that we love you, and you will always be beautiful to us!!

I could sit and stare at Ella Grace all day long. She is getting so big, and turning into a little girl. She has nearly lost that toddler look!!

(((HUGS)))

Tricia said...

I'm so sorry to hear about this and wish I had more information. I've lost hair after both pregnancies (and of course it has only been 7 months since Rainer was born, so who knows if it will continue), but I FEEL like there's got to be something out there to help besides Rogaine. Can you get a second opinion?

I can relate to how you feel about it "always being something". You've done nothing wrong, friend. That which doesn't kill us...and all that. Not much help in the midst of things all the time, but let me just say....

Your HAIR is NOT all you have. Not by a LONG shot. And this coming from someone who only knows you online. If I knew you in person I am sure that statement would only be compounded!

TUC said...

Dang, Kacey, you need a break. It's time you won the Mega-millions or something.

If you haven't found it already, you may be interested in this website, http://www.womenshairlossproject.com/

Wendy P said...

((((hugs)))) Kacey!

Clh03uga said...

not all you've got at all! I do know it's still hard...mine fell out after I had Hudson, and I freaked out. It has grown back though but it is a LOT thinner than it was!

Molly C said...

biotin!! and something else. and Prenatal vites. My roommate in college had an issue like that, stress induced. She takes biotin now and she said it really made a difference.

Hang in there!And also, you, my darling, are SO much more than your hair.

Shannon said...

Kacey, I don't have any amazing suggestions or ideas (though my mom has alopecia, and I can ask her...), but I wanted to comment anyway. I don't want this to sound like it's minimizing your worry (which would freak me out too), but you DO have SO much more going for you than "just" hair. You have an amazing sense of humor, an incredible heart to help people (and a clear calling specifically to families with or expecting special needs kids, which is AWESOME and you're so good at it), one of the most magnetic personalities and senses of humor I can think of,...I could go on, but won't for fear you'll think I'm too gushy. :)

Secondly, though my situations, frustrations, and stresses are decidedly different, the tone (and the questions and the when-will-things-just-be-normal feelings) are things I completely relate to and have been thinking a LOT about lately. Your post was an encouragement to me, even just in knowing I'm not alone when the future is scary and uncertain. Thanks for your transparency and for sharing your heart.
Love ya!!

Kristen said...

Kacey, I wish I could give you a big hug, brew some tea, and sit beneath a beautiful, blue sky with you and talk for hours.

Life is hard...no life just sucks sometimes! I get that! I've had those thoughts before. When I was a kid I was good at sports. No, I'm going to brag here a bit...I was awesome! The best in my school. Then when I was 12 years old I was in a car accident that broke my back, I lost my left kidney, tail of my pancreases, and part of my liver. I was in the hospital for a month, and after that rehab for a over a year. My spinal cord, in the accident, was pinched between my broken vertebrae. The doctor said it was a miracle that I could walk. But I had permanent nerve damage and no longer could play sports like I use to. I didn't know who I was without that ability. I was depressed. Then came along a great christian guy and we dated in high school for 2 years before he died in a car crash. Then the hardship of receiving Cayman's diagnoses. I know none of that is all related to each, but it feels like all that tragedy runs together when you're going through it. Oh boy, do I understand pleading with God for a break in life!

I encourage you to keep searching and finding different modalities that might help. I always brag about Cayman's Naturopathic Doctor because he's so great! He has helped us tremendously. I wish you could see him. I have no doubt he would be able to help with your hair loss and your depression. And just a thought, this hair loss, could it be a side effect of the depression medicine?

Anonymous said...

Hi Kacey, it's Christina I am so sorry to hear about what's going on. I would probably be the same way since I just love my hair. When I was reading your story I rmembered an episode of John and Kate Plus 8 where John was having thinning hair very early, and he was able to do a hair restoration treatment. I know this sounds gross but it may work...They take a pc of your skin from the back of your head with so many folicles on it, then they transplant it int the front and your hair continues to grow and such...I would look it up, maybe that's something you could do...

Cate said...

Ah, sheesh, that's hard. You DO have gorgeous hair. Although that's hardly all you have!

I don't know anything about alopecia, but I'd bet there's something online.

Mommy to those Special Ks said...

(((Kacey))) I wish I could give you a big hug. I don't have any words of advice, I wish I did, but hang in there, this too shall pass.

Anne and Whitney: Up, Down and All Around said...

Kacey,
As all of the other people who left comments have said, you do have so much more than your hair, but that does not make it any easier at all to hear that (but hopefully hearing it enough will help) you are the BEST mommy to Ella and Hunter, so happy to hear that you and Chris are doing so well and it is awesome that you have a new house and an exciting new job, but your hair is important to you, as it would be to any girl (or guy for that matter) and you are right to be checking into it. i would probably try to get a second opinion or see if there are any hair or scalp specialists for women. it looked like someone had a link for something like that in one of their comments. maybe the vitamins and biotin will also work. my hair fell out after i had anne and then came back, but not as curly and not as thick and then after having whitney, i lost a TON of hair and slowly some tiny baby fuzz is coming back, but certainly not like it used to be. if you find some vitamins or something that make a big difference, i would also love to know about it (i could use it too).
i also hear you on the "when is enough, enough???!!!" i think everyone goes through this kind of thing at some point, but for some reason, it does seem like some have it harder than others - i felt the same way when we were just 6 months 1 day out from whitney's open heart surgery and my mom had to have open heart surgery to have her aortic valve replaced (she is going home today, thank God!) would you believe (i didn't put this on the blog) that the day my mom had her open heart surgery i was caught in my car in a hail storm and when i got home that night, i saw that my house and our entire neighborhood had been hailed on and some of the houses look like a machine gun was taken to them... it turns out our neighborhood was on the news because the hailstorm hit us the hardest (baseball size hail)!!! seriously???!!! i couldn't believe it and just thought, why of all days does this have to happen today?
anyway - just wanted to commiserate, hopefully hearing that other people are feeling the same way a lot of the time will help! i am sure by being proactive and looking into your hair issue early, you will be able to do something about it, and maybe like one of the comments said happened to their roommate in college from stress, it will turn out to be a stress issue that will continue to get better over time - maybe a naturopathic doctor can help too???
thinking about you!!!!

Laura

Cammie Heflin said...

Oh my goodness you have had a lot of stress lately, moving, a new job, etc.! Hopefully this will work. This will give you a smile. If you haven't gone to this blog, do it's worth the read:

http://urbanfunnyfarm.blogspot.com/

Their daughter was adopted from Ukraine with DS and has been diagnosed with Alopecia, she is beautiful!

Flee said...

Do you take Zertec? I recently looked up the side effects because of problems we were having with our daughter and at least two people mentioned hairloss. Just a thought. I never would have looked it up if Tricia hadn't mentioned the problems she was having with Claritan.



http://www.askapatient.com/viewrating.asp?drug=19835&name=ZYRTEC&page=2

Adrienne said...

Hi. I just wanted to let you know how much I love your blog and how seeing the wonderful pictures of your precious kids always lifts my day. We have several friends who have had DS babies in the last year and your blog has been an amazing source of information. Thank you for being so honest and open.

Hang in there on the hair stuff. I would be totally freaking out too (and my hair is nowhere near as beautiful as yours!) Hope you can find effective treatments!

Adrienne in Texas

Laurie said...

Kacey,
I don't have anything else to add, but wanted to show my support and give you giant hugs.

You are in my thoughts.

Leah said...

Hey! I have the same thing! Years ago, I was in a study for Rogaine for women. At the time, they'd just approved 5% for men, and were trying to get 5% for women approved. (at that time only 2% was available.) Anyway, anyone who wanted to participate in the study had to go through a whole battery of tests first to make sure their hair loss wasn't hormal or had other causes. They had to just have alopecia or female pattern baldness. Anyway, I got into the study! I DID regrow quite a bit of hair with the rogaine, but they did find out that the 5%, while it worked great for men, didn't make a difference for women. Well, it made their hair grow, but there was no difference in growth between the 2% and the 5%. At that time (12 years ago) I couldn' afford Rogaine, so all the hair I regrew fall out, which is what happens when you stop using Rogaine. I've been wearing my hair super short for years now, and hated that you could see so much of my scalp. Really, it looked like I just had plugs. I decided to grow my hair out again, then I realized how thin my bangs have gotten. HOLY COW! So I started using Rogaine again, as it's very affordable now. I get the off brand at Target, and I've regrown a lot of hair. It's been 4 months of Rogain and even my husband can see the difference now. I can't even pull my hair back because all the new hair growth is at the stage where it's standing straight up and makes me look a little like a porkupine. LOL I've also heard great things about Nioxin, but I'm afraid to stop using the Rogain to try it. LOL

Aunt Tami said...

Sorry to hear about the hair loss...that sucks to say the least!!! You do have such beautiful hair, no matter how much you have! One thing to be thankful for is that you already have really thick, curly hair to begin with...that is going to minimize the looks of the loss as opposed to if you had thin straight hair. My suggestion is to keep using the Rogaine. It isnt a cure, but it does help. Also find out if your doc checked out the meds you are taking to see if this is a horrible side effect. You need to listen to that song by India Arie "I Am Not My Hair"...because YOU are not your hair!! You are so much more than that and you know that!! You are finally starting the best part of life...got a great family, great NEW job, great NEW house, no more military life...Enjoy all that is to come!! This is just a speedbump!!! (PS..you could look at it this way you will always have more hair than my bro!! Ha ha!!) Love ya's--Aunt Tami and family

amy flege said...

i just wanted to stop by and say you will be beautiful no matter what! i have always had thin hair on top... i use nioxin. it does help!!!!!
hugs!

Bethany said...

Aww girl, I'm sorry! :( I totally understand how you feel and I am praying the vitamins or Rogaine work! I know vitamins affect my hair big time, so I know that works!

Pallavi said...

Hey Kacey,
A tight Hug to you.
I just want to say, continue trusting god. I am sure a way will come out honey.

And wish you all the best for your job. :)

Love

Colleen said...

Sorry to hear about the hair loss. If it makes you feel any better I've had premature grey hair since I was in high school and for some funny reason I've gained a ton of grey's over the past 2 years. Hmmmm....wonder what could be causing that?? (: