Monday, March 11, 2013

Lupus hair loss - what mine looked liked, literally!

For those of you wondering just how short I've had to cut my hair because of lupus hair loss - I found a couple of visual aids.

In the process of transferring all of my data from my old computer to my new one, I ran across these nostalgic photos and thought I'd share, as I don't think I ever have before.  Of all of the emails, comments, and questions I get about lupus, I think the subject that I hear about the most is hair loss. How long does it last? How bad is it? What can be done in spite of it?

I've written quite a few posts on it, because I've dealt with significant hair loss several times in the 12 years (and two pregnancies) I've had since being diagnosed with lupus. And none of them were fun. But these pictures symbolize what was likely the most significant turning point in my life with lupus:
Cutting off all of my hair to minimize the emotional and physical damage that my latest case of hair loss had caused. This was by far my worst bout - leaving me with literal strands of hair left on my head. So, instead of holding onto those strands (and my life before lupus) for dear life, I decided to start over. And this super short haircut was the first step.

You can read about the whole ordeal here - but here's what you should know: the reason I have these pictures is because the moment I walked into the house with my new haircut, Johnny took one look at me, told me how gorgeous I looked, and insisted we do a photo shoot. Here's the excerpt from my book:

After my hair appointment, I went home to show Johnny my new ‘do. He absolutely loved it! He thought I looked like a sophisticated model from a magazine, and immediately insisted that we have an impromptu photo shoot in the back yard. The loving, enthralled look he had on his face as he shot those pictures made me feel like I was the most beautiful woman in the whole world. He was always telling me I was, but I will forever cherish the captivated way in which he embraced me and my new haircut that day. After shooting a few pictures, he proudly sent them off via email to some family members, who all responded with complimentary remarks.

(If you think I might have shed a few tears while writing this post, you're right!)

I can't tell you how wonderfully loving and supportive Johnny was that day, and every day since. Not a day goes by when I'm forced to face this nasty little disease on my own. Surrounded by friends and family, including a husband who loves me, lupus and all, I have no excuse not to do my best to live well, despite it. I owe it to the people who believe in me, who trust me to do the right thing, and who are counting on me to do what I can to be happy and healthy for a very, very, very long time in the future. I promise to do my part...fingers crossed.

10 comments:

Jordan said...

That Johnny....he's a keeper!

Sara Gorman said...

He sure is!!

Katie Rice said...

You ARE beautiful- inside and out, Little Sis.

Sara Gorman said...

Awwwww....thanks, big sis!

Eileen said...

You know - I like that better than the picture on your blog!
There was a picture on FB the other day with a 15 year old who has had to cut her hair even shorter because of chemo - she looked stunning but was worried about being "non-girly" so mum posted to ask people to vote. I used to have very short hair - I loved it!

Sara Gorman said...

Thank you so much, eileen! i'd prefer not to have to go quite this short again...but it sure was fun to experiment with so much product!

MarlaJan said...

I've been reading your blog for quite some time, and I love how you put it all out there. It's inspired me to do the same with my lupus battle. Our stories are practically identical. I was 26, home from my honeymoon for exactly one month to the day when I first landed in the ER starting my SLE journey.

My husband had to buzz my hair off a few months ago due to patchy hair loss (I looked like Miley Cyrus' fat older sister... not cute!) so I know how it feels.

You are BEAUTIFUL!!!! Please keep doing what you're doing!

MarlaJan
http://luckfupus.blogspot.com

The post where I filmed buzzing my hair!
http://luckfupus.blogspot.com/2012/11/im-too-sexy-for-my-hair.html

Sara Gorman said...

MarlaJan-thanks so much for reading along! i'm so glad you started a blog, and i can't wait to check out your video. Congrats on embracing your short new 'do. I'm sure it suits you well! I look forward to keeping tabs on your blog.

Jessica said...

Oh my, this is absolutely one of the sweetest things I've ever read. Not many ordinary people without autoimmune or cancer related illnesses could appreciate the profound significance of this post but man, it's amazing. It seems so punishing to not only have a disabling illness that applies limitations to your daily life but now you get to deal with hair loss?!?! I, like you, cut most of mine off a few years back in an attempt to preserve or enhance any body or fullness I might have left. It's extremely embarrassing to have your coworkers comment on bald spots and having to explain to family and friends why your hair doesn't look like it used to. It's so important to surround yourself with positive people in your life and I'm so glad to hear you have an amazing spouse. I'm remarried because my former spouse bailed out on me not too long after my SLE diagnosis. I was a single mom to 3 wonderful gals starting all over until not long ago. I finally found the one that actually has stuck to our vows (including in sickness and health) and loves me dearly. I guess it's really true that when one door closes another one opens. Thank you again for being so open and honest and sharing so me and others have someone on Earth to relate to. I really enjoy your blogs!

Sara Gorman said...

What a thoughtful comment! thanks so much for sharing--i'm so glad you finally found "a good one" :), and that you now have the support you need and deserve! i hope you're well and know that hearing your trials with hair loss at work brought back memories. i can't thank you enough for commenting!