Looking for Something?

eleven years and counting

Author:
IMG_1895

Greetings! This is a scheduled post because I’ve been away all week at a very special place, doing a very special thing. This is my eleventh consecutive summer volunteering at an overnight camp put on by the American Academy of Dermatology. It’s a week long camp specifically for children with chronic skin conditions and there’s no place like it on earth. Well actually there are several different locations around the globe now but the point is, there’s no place like it for kids (and kids like me) to go where they feel completely “normal” and most like themselves.

IMG_7988

How did I get involved in something like this? Well I was born with a rare skin condition called Lamellar Ichthyosis and I had the pleasure of attending this same camp as a kid. It wasn’t until I went back as an adult that I truly realized the impact it has, and the difference it makes, in the lives of the children (and adults!) that get to attend. It has done wonders for my confidence and self worth, and I’m honored to be asked back every summer to help out.

IMG_8321

Camp is really like my safe place where people truly know me (as cheesy as that sounds). It doesn’t matter how dry, cracked, scaly, or flared up my skin looks, or whether I wear wigs or not. (For the record: Ichthyosis affects all of my skin, but on a good day my hands still look like they belong on a 90 year old lizard – No offense to those with dry skin conditions, or elderly reptiles, I just try to make light of the things in my life that kinda suck sometimes. My humor is my defense mechanism).

When you look at my photos here you’d probably never guess there was anything different about me, and that’s because modern medicine is a marvelous thing. Plus I don’t like taking close-ups of my hands, or any photos at all when my skin is flared up. Not really because of the way it looks, but because it’s extremely uncomfortable and can be quite painful to do ANYTHING during those times, let alone put on makeup, wear clothing other than pajamas, and try to stop scratching long enough to take a photo. It’s just what I deal with and I deal with it quite well. It could be better, it could be worse, it’s whatever. It’s part of who I am.

I don’t have pretty hands, but they make pretty things and I’m quite proud of that.

IMG_9292

It’s nice though to not have to put up a guard or put on a brave face for one whole week out of the year. For this week I get to be totally free among my peers. …and also among dermatologists which is awesome because they understand the need to stay hydrated, slathered in fragrance-free moisturizer, and covered in SPF 1000 at all times. We have a lot of fun (no sarcasm there).

IMG_7492

But you know what? The sewing community has become my safe zone for the other 51 weeks of the year outside of camp. I feel welcome here and my blog is a place where I can express the best version of myself in a way that makes me feel accepted and empowered. It’s pretty awesome and I have you all to thank for that. So thank you <3

I’m sure some of you out there have similar circumstances in your lives that make you feel exactly like I do. If you’re comfortable sharing, I’d love to hear how the sewing community (or some other community) has made you feel welcomed and loved.

It’s nice to talk about that stuff sometimes.

xo
Rochelle

Feedback

88
  • sewcookgardenrepeat

    Rochelle, you are so gosh darn cute and you are such a good person!!!!! Hope you had fun at camp :)

  • Shannon Olden

    awesome that you do this. some of your readers may be interested to know that food oils like olive oil or coconut oil can be a lifesaver. as can pumpkin soap :http://www.rockymountainsoap.com/productDetails/1017201/1015197/1000144

    a friend’s baby had horrible eczema and i suggested the olive oil and it worked like magic.

  • Alicia

    I just recently started reading your blog, after seeing it featured on Tasha’s blog. This was the first post that I read and am so happy to have discovered you. I have had eczema since I was a baby. It was very severe as a child, covering most of my legs and feet. It cleared up during my late teens, only to flare up again after I had my second child. My right hand especially was covered in scaly, red, itchy patches and I was extremely self conscious about it. Shaking hands was a nightmare because everyone would recoil in horror at my “lizard skin”. Even my daughter didn’t like holding hands with me, but only because she didn’t understand that eczema wasn’t contagious.

    Thank you for being a part of such a wonderful camp for kids. You are such an inspiration to people like me and I’m sure those kids look up to you.

  • Lynne Johnson

    Rochelle, I enjoy your blog so much!. You create lovely things that you are willing to share with us in such an entertaining way. But best of all, you have created a lovely, wonderful, gifted person in yourself. You are so generous to let us in on the journey.

  • Rhia

    I never would have guessed from your photos that you have this lifelong illness. You always look so happy and cheerful. So I want to thank you for your trust and honesty and the courage for sharing this to us. You truly are inspiration to all of us and I am thankful that I have found this little vintage and sewing online community, because it is so loving and supporting.

    When I was reading your story I was thinking to myself that I can only imagine what it feels to have a illness like that. Then I realized that I had “forgotten” mine. About 10 years ago I suffered burnout and depression and the risk of getting depressed again is always there and for the past 15 years I have had quite severe migrain which basically paralyses me when the pain attack comes. I realized that even though my illnesses don’t show on my body and they are not necessary affecting my daily life, they are still something I have to live with. They are part of me and have made me the person I am today.

    So with that realization I want to send all my love and best wishes to you and everyone else, with or without illness. You can never know when someone is battling in their lives and illness doesn’t always show. That’s why we all just need love, just the way we are. Hugs!

  • Denise

    So nice that such a place exists and can help kids out. I grew up with dry,cracked scaly hands that were embarrassing and bled when the cracking was severe. At that time, no one in school or anywhere understood anything about it. Although my skin has gotten better today, I still hide my hands. Thanks for talking about this too. You are amazing and beautiful and I wish. I was more like you!

    • Rochelle New

      Thank you so much, Denise. That’s so sweet of you to say! I can empathize with your comment about your hands completely. It’s comforting to know we’re not alone in the world :)

  • Lisa Sharp

    Wow, sounds like such a wonderful camp and I love that you are giving back. Also thank you for sharing, I’m sure it will help other people with the same illness. <3

    • Rochelle New

      Thanks, Lisa. It truly is a wonderful place. I hope these kids grow up and come back as counselors with the same positive experience that I had. …actually I know first hand that some of them do and it’s great to see when that happens!

  • Laura Grabow

    It is a lovely act to care for children with skin disease and it is especially wonderful that you do this and show them how to live with something so serious. I have a birth defect to my hand and I always wished that a child I could have known adults that had my issues but lived with it anyway. Thank you, you are a kind and compassionate individual.

    • Rochelle New

      That’s a huge reason why I go back and volunteer every year – Being a child with any kind of difference is really hard, so seeing an adult like you who’s well adjusted and happy is the best gift you can be given. As an adult I aspire to be the person my younger self might have seen and looked up to. Sounds kind of funny to put it like that, but that’s who I want to be for the next generation of kids.

  • Nnenna

    Thank you for sharing your experiences, to echo the others your confidence is so inspiring and the fact that you are helping others in the way that you were once helped is even more so. Thank You.

  • Juliet

    wow, very inspiring! I have psoriasis and have had since my daughter was born (23 years ago). Skin conditions are terrible-often because of other peoples reactions. I have had people telling me I mustnt be very clean or I wouldnt have it, shrinkiing away from me, but I also worked with very young children and their honesty and compassion was a wonderful thing. Surprisingly, or maybe not so, my daughters partner also has the condition and he can be very ‘aware’ of it and I have heard her telling him ‘its nothing, just use your cream…my mum has it and shes fine’. So maybe my negative feelings arent that obvious and maybe-just maybe they have led to her being able to see past the obvious. Take care x

    • Rochelle New

      I have many friends with Psoriasis who I’ve met through this camp and it’s always great to have honest conversations with them about skin. It’s easy to get down on yourself and remember how others might see you, until you’re among friends who understand exactly what you’re going through. Then it really does become no big deal and it’s fine! It’s just another thing to deal with and see past :)

  • misscrayolacreepy

    You are beautiful inside and out. Those campers are lucky to get to spend the week with you! xoxox

  • Jennifer

    I think it’s really wonderful that you’re so passionate about this cause. For what it’s worth, I think your hands are beautiful.

  • Heather Lou

    So glad you found a place where you feel safe and loved (Outside of our loving digital arms!)

  • Lisa

    These days I’m reasonably “normal” but I’ve been down that road of not fitting in. There is so much negativity and anger in the world, and what I love about the sewing community is that it’s full of people who are fun, interesting and open minded. There might be something about the creativity and patience sewing requires that attracts certain people… It’s a safe place from the nastiness we all encounter sometimes and that’s why I love it. Enjoy!!

    • Rochelle New

      I completely agree, I think there’s something about the type of people who love to create things that makes them more nurturing and accepting by nature. At least that’s what I’ve encountered thus far. It’s pretty awesome.

  • Lynne

    You are such a star for volunteering at this camp, and also for being so honest about your skin condition. I have a skin condition called Rosacea. It just affects the face, so is nothing as severe as yours, but because it’s on the face, it’s there for the whole world to see! I totally agree with you that modern medicine is a wonderful thing to keep it under control, and a sense of humour definitely helps! But when it flares up it is so itchy and looks awful (I have some permanent scarring on my chin) and I’ve found myself apologising for the state of my face. I just wanted to say thank you for highlighting skin conditions, and I hope you can continue to manage yours. Lynne.

    • Rochelle New

      I’m familiar with Rosacea and can certainly empathize with you and what you said about feeling like you have to apologize for what you look like. I wish we never had to feel like that but it’s a true feeling, I’ll admit to that. Here’s to modern medicine and senses of humor and apologizing to no one ;)

      xo

  • Philippa

    I was interested to read about your health issues. I’m ashamed to say I hadn’t much awareness of this condition. I always look at your pictures and think how beautiful you look, so I would never have known. I like the sound of your week away, it appeals to me to take a week every year and go somewhere you can feel so free. I’ll keep this brief, but I caught swine flu a few years ago and it damaged my immune system leaving me with fibromyalgia and ME. This means sewing and blogging can sometimes be a struggle for me (although I am a lot better these days, at least with the exhaustion side), but like you I find it so worth it. Jessica (Chronically Vintage) has been a great inspiration for me in this respect. When I saw what she could do it inspired me to try to do more myself (I didn’t even think I could manage to blog occasionally). So we in this community really do help and inspire each other, and like you I absolutely love it. It has been a lifeline for me at times!

    • Rochelle New

      I agree that Jessica is a wonderful inspiration for anyone with any kind of chronic condition. I love the people I’ve met through blogging and also the person I get to be when I blog. I always try to share my best work and show my best face so I always have a place to remind myself why the bad days are still so worth it. It’s definitely a lifeline! I’m happy you feel at home in the blog world too :)

  • Jessica Cangiano

    You will forever be one of my biggest inspirations, dear Rochelle. Thank you for speaking so candidly about your lifelong battle with this condition and for helping others in similar shoes for 11 wonderful years now. I think your hands, like all of you, are immensely beautiful, because they’re yours and they’ve weathered so many storms over the years, which have made you the wise, caring, amazing person that you are today.

    ♥ Jessica

    • Rochelle New

      You’ve always been such a sweet soul, Jessica. I’m glad that we share a connection with blogging and chronic conditions and even our “hair” ;) You are also an incredible role model for the vintage community and beyond! <3

  • Kimberly Stearns

    I’m going to “second” the accurate sentiment that your hands are indeed beautiful, in themselves (great character:-)) and for what they do. Thank you for sharing!

  • Joanne

    A really lovely post – thank you. You are inspiring on SO many levels.

  • stgilbert

    Your hands ARE beautiful because of what they can do not how they look. You are such a sweet soul, Rochelle, and I am honoured to call you a friend. Those children are very lucky to have you as a role model.

    My grandfather suffered from severe eczema – it covered him from head to toe, literally. I’m lucky to only have small patches on my feet, elbows, and head. It’s my anxiety disorder, although well-controlled, that can be a bear to live with sometimes. But, at least it’s a ‘good’ crazy, right?

    • Rochelle New

      You’re so sweet, Sarah. Thank you. I’ve dealt with my fair share of anxiety too, and on the bright side, it really does help build character, doesn’t it? Haha! Yeah I’d say it’s a good kind of crazy ;)

  • Emileigh R.

    I have psoriasis, so I sort of understand. I get it on my face, neck, etc. and someone commented about it the other day. It makes me want to shrink down and be invisible, but I’ve gotten better at dealing with it (physically and emotionally). Great job on giving back to others and helping others along in their journey to self confidence and acceptance!

    • Rochelle New

      I know many amazing people with Psoriasis that I’ve met through camp and we all know that shrinking feeling. Most of the time I don’t feel comfortable or outgoing enough to be an advocate for my skin, or similar conditions, but sometimes when you open up about it you meet other awesome people who can relate ;)

  • Colima

    Thank you for sharing and doing what you do and being who you are! I just attended a camp for widows! It was an amazing, wonderful experience. My husband died suddenly at 37, not having been sick previously. It has been an isolating experience not just losing my love and best friend but there are no local support groups and I don’t personally know any other widows let alone young ones. So, even though it’s not the same as you I can understand the freedom of being around other people who “get it”. I sew, quilt and knit for my sanity and this community helps me feel less alone.

    • Rochelle New

      Wow that’s incredible, they really have a camp for everything! I can’t even imagine the pain of losing a husband, but I can certainly relate to finding the kind of solace that exists in these special communities. I’m so happy you could experience that kind of freedom and acceptance :)

  • Hayley

    So lovely to hear that you’ve found a haven. In recent years I have developed Psoriasis on my scalp and although it is not severe, it definitely knocks your confidence. I found a passion for vintage and crafts and having something you can focus on definitely helps. As well as the wonderful world of medicine and doctors!

    • Rochelle New

      My skin also affects my scalp quite badly which is why I resort to wearing wigs sometimes. I play it off like they’re a fun accessory but they’re really just as much a necessity. When you can’t change your situation, change your outlook! At least that’s what I try to do. …or buy more vintage and make more crafts. That helps too ;)

  • Victoria

    I’ve worked at a summer camp for the past five summers. Even though it isn’t a camp for something specific like yours, the campers (and staff) always talk about how much they love that at camp they can be their true selves and feel loved and accepted for who they really are. It is awesome that people can feel that, but it breaks my heart that people feel like they need to have a false front at times. It’s inspired me to try to be as comfortable with who I am and let that show as much of the time as possible.

    • Rochelle New

      Yeah I bet all camps have that kind of special power to some degree. It’s awesome that you get to experience that too! I always aspire to be the person I am at camp year round, and every year I come home it gets a little easier to keep that “me” momentum going. Blogging has also helped me out SO much with taking down my shy shell and just being the best version of me that I can possibly be :)

  • zilredloh

    How wonderful you’re able to give your time to help young kids – it’s lovely when things go full circle. Just think how many kids your helping that will probably come back as an adult and volunteer too. Sappy – yes. But still wonderful. :D Cheers.

    • zilredloh

      “you’re helping” not “your helping”. I know better… my hands were too quick to catch my typo until it was too late. lol

    • Rochelle New

      Yeah the full circle is the most fulfilling part. Actually this year I recognized one of the new counselors as a camper that I had several years earlier! She grew up to be such a beautiful, well rounded adult and that’s my favorite thing to see :) Now she’s back to pass it on the next generation of campers and the circle continues. It’s pretty awesome.

  • Lynn

    Thank you so much for sharing. I guess most of us don’t give much thought to skin conditions and the impact they can have on a person’s life. It’s great that there is a place you can go where people understand.

    I am lucky that I don’t have anything like this to deal with myself. I just have hang-ups, leftover from childhood, about being unpopular and in the blog world I’m still unpopular but everyone in the sewing community is so nice that even though they don’t notice me I still kinda feel like I belong.

    • Lisa

      I know just what you mean Lynn! But I don’t mind it now, because all the cool kids are actually cool!

    • Rochelle New

      Everyone has their hangups, some are just more obvious than others. That’s why I try to be nice to everyone because you never know what kind of internal battles they might be fighting. I was a complete outcast for most of my life so the fact that you’ve read this post and left a comment helps solidify that I’m not that person anymore. Blogging is pretty awesome :)

  • spinneretta

    I am glad you get to hang out with others with your condition :) We can be as accepting as all get go, but it is not quite the same as being with people who actually understand what it is like!
    Perhaps you will get to share your love of sewing with some of them, and maybe even bring one or two over to the dark side :)
    I hope you enjoy your time at camp!

    • Rochelle New

      Thanks! You know a few of the girls overheard me talking to a co-counselor about the shirt I was wearing (which I made) and they were like “You MADE that?! That’s so cool!! I wish I could do that…”. Then I explained that anyone can learn to sew and they should try to find a place to take lessons. So who knows. Maybe I did bring a couple over to the dark side ;)

  • gingermakes

    I’m so glad you’ve got the opportunity to go back to camp! I bet the kids really benefit from your confidence and positivity.

  • Chris Griffin

    I think that you go back to camp every year and give kids the same safe-space you have is fantastic. I wish your disease was easier to handle, but I don’t see your disease even when I look at your hands in the photo above. You’re a beautiful woman and it’s evident in everything from your smile, hands and the things you make. Many of us don’t handle our diseases as well as you are and I think you are an inspiration.
    Thank you for sharing, and for being *you*!!

  • sallie

    Oh Rochelle! Thanks for opening up and sharing with us! You’re an absolutely beautiful woman, and I just love those hands! I agree, the sewing community has been so warm and inviting that it has helped me overcome a lot of things about myself that cause me stress, anxiety and insecurity. From acne to weight fluctuations and a body I’m not always comfortable in – sewing has weirdly been a place for me to work through those issues. I’m so glad that you have a place with IRL friends where you can relax and just be yourself. That’s so tremendously important. Have a great time!! And BOO to all fragrance in skincare!! xoxoxo!

    • Rochelle New

      Thank you, Sallie! Sewing has really helped me work through a lot of that stuff too, and blogging has really pushed me to be as confident/happy/outgoing in real life as I am in my posts. Blogging is like my superhero cape haha! …and fragrance in skincare is my Kryptonite.

  • colleen

    You are beautiful inside and out. Bless those hands!!!

  • Maria

    Thank you Rochelle, very much for this beautiful post. For this and many other reasons I enjoy reading and learning about your wonderful attitude toward life no matter what it has to offer. Keeping one’s confidence up is sometimes hard, however you give hope to others that may not have it. Thank you.

  • ShanniLovess

    You are a beautiful person inside and out. And I agree the sewing community is pretty awesome.

  • Lisette

    Bravo on accepting yourself in such a cheerful way! My sister has psoriasis that she’s only just figuring out how to deal with. And yay for camp! I loved being a camper and I loved being a counselor with Girl Scouts.

    • Rochelle New

      Psoriasis can be so hard, I know many who have it (all of whom I’ve met at camp!). Trying to have a good sense of humor about the crappy things in life really helps make it easier to deal with, that and a supportive family ;) I bet Girl Scout camp is so fun!

  • Lauren

    Dude, you’re such an amazing person <3

  • joyfuljumblies

    So inspiring! I have Transverse Myelitis and chronic fatigue and life a daily challenge . Sewing and crochet are my sanity. Love your makes and photos.

  • Meghan

    Aren’t camps wonderful?! :) My sister went to a camp for kids with diabetes (and volunteers now as an adult)…she describes it exactly as you have. A fun place where she is free to be completely herself. I am sure you are an inspiration to those who are attending camp with you; just as you are an inspiration to those of us who follow the blog! And please know, it’s not perfection that inspires, it’s your wonderful honesty. I love when something comes together perfectly, but I have to admit I really love it when you share the stuff that worked out wonky. It’s that stuff that makes us human. :)

    • Rochelle

      Camps really are the best! Especially the ones for children with special needs. Thank you for leaving such a sweet, uplifting comment. You really just made my day <3

  • alexandracuckoo

    I think your hands are pretty. :)

    I’m so glad that there’s somewhere where both kids and adults alike can go and just relax for a week with peers, that’s awesome!

    I have nerve damage in my neck and arm, so I suffer from chronic nerve pain (it’s a beast some days!) so I hear you on the miracle of modern medicine! My daily painkillers are sometimes the only things that keep me going! Still, there are people in much worse pain than I am, so I’m very lucky!

    I hope you have a wonderful week at camp!

    • Rochelle

      Thanks, Alexandra! You’re so sweet :) Cheers to painkillers and modern medicine!

  • Lady Stitcher

    This camp sounds amazing! I hope you’re having a lot of fun, am sure the kids you’re working with each year will look back later at how much it has meant for them too :)

  • Jane

    Well done, you are doing a great job. You make wonderful things; really loving the great shirts you have been making. I am disabled, my arms don’t work very well, I have had to give up work. I can’t sew as much as I would like. But I can paint, as that is quite a gentle movement, and have found great solace in a weekly painting group where we all just do what we love, and disability does not come in to it. Loosing yourself in something you love with others is great. Really enjoying the honesty of your posts, keep it up!

    • Rochelle

      Thank you so much, Jane. I used to paint a lot when I was younger and I really miss it. There’s something so therapeutic about touching a brush to canvas. Even if I wasn’t painting anything in particular I just really loved the motion of adding color and swirling it around. I can see how a painting group could be such a wonderful thing. I hope painting continues to bring you comfort and healing. xo

  • pam

    I love that you attend the camp — and so positive with your condition. I applaud your honesty and admire your endurance and fortitude!

  • Sarah

    I worked at an MDA camp one year and it was life changing. It was awesome to see how happy all of the kids were. I know you’ll have a great time. :)

    • Rochelle

      Thanks, Sarah. Isn’t it wonderful how much impact a camp can have? :)

  • Colesworth

    I love the b+w of your hands holding the mug ;o)

  • Lynn

    I am impressed with the equanimity with which you treat your condition. It takes a lot of courage to reach your level of confidence and assurance. I Agree, you do make pretty things. :-)

    • Rochelle

      Thank you, Lynn. I spent many years of my life being bitter and sad and you can’t get that time back. I still struggle with confidence and assurance but everyday is a new opportunity to have a positive outlook. I try to keep a smile on my face at all times :)

Leave a Reply

A Blog By Rochelle New

I'm a fabric wizard and wielder of needles with a passion for quilt industry cottons, bygone eras, and natural things.

i.e. I mostly do nerd things like pretend I'm a wizard, collect moldy books, and spend too much time picking up acorns in the woods, all with my spirit animal (a dog named Lucille), my personal photographer (a man named William), and a few literal fat cats in tow.

Making magic and messes in the backwoods of New York.

Featured Sponsor

Newsletter

Sponsors and Friends

Affiliates

Give-a-Gift and Get-a-Gift


Read Along with Bloglovin’

Follow on Bloglovin