Introductions, please ♥

[Former_Member]

Hey, everyone! I thought this would be a good way to start off. I am a Spoonie. I have lupus and fibromyalgia. And Ehlers-Danlos Syndrome. I forget that one, it's a relatively new diagnosis. I'm happily married to a nearly perfect man, with two stepsons and two very spoiled little dogs. I'm also addicted to crafts.

I have been making earrings, mostly. I'm starting to work with fabrics and branching out with more kinds of awareness ribbons and spoons. I got an anvil for Christmas, so silverware, beware!

Hugs,
Hil

[Former_Member]

A fellow spoonie, I have Incomplete Transverse Myelitis (TM) & a couple tag-ons that we will try to ignore... I was formally diagnosed 7 years ago and it has been an interesting journey.

Crafting has always been a part of my life. My mother was & is an avid crafter, creating decorations out of whatever was on hand. As a result most of my creations are made on a whim. So you never know what you'll find in my store!

Welcome to all,
Susan

[FriendlyWrenJewelry]

Hi everyone!

I also have Ehlers-Danlos syndrome (hypermobility type) and a bunch of stuff that goes with it (Chiari malformation, tethered spinal cord, TMJ, IBS, chronic migraine, lumbar spine pars fracture, RLS, POTS, etc., etc., etc.

Making jewelry and having my Etsy shop is an amazing distraction for me.

Glad to have found this team!

Liz :-)

[Former_Member]

Welcome to the team Liz.

[Former_Member]

Hi! I'm Casey and I have Interstitial Cystitis. It is a chronic inflammation of the bladder and which I was diagnosed with while still in college 3 years ago (playing Division I soccer as a goalkeeper). It was far more difficult to control my pain when I was misdiagnosed with chronic bladder infections and fed antibiotics daily (which makes I.C. even worse!). Those were the worst times..those first two years of college and not knowing why I was in constant pain while working out every day for soccer and dealing with earning my Bachelors in Fine Art at the same time. My correct diagnosis really made a huge difference and I am so thankful to be in a little less pain nowadays.
Thank you for letting me be a part of this wonderful team!
You are all such an inspiration.

[Former_Member]

Liz, Casey, welcome!!!
I have a rather horrid sense of humor and I tend to bust out with things. I suppose I should warn everyone now!
I want this to be a safe place where we can lean on each other when needed, and promote each other for more sales. I would like to spread the word that just because we have a disease or condition that is flying under the radar, it does not mean that WE are invisible. ♥
Susan, you have been doing a most excellent job with the discussion threads!
Casey, I played left and center fullback in soccer until I was 15. It got to be too much for me, though. My lupus symptoms started when I was 13, and the fatigue was just too much for me to push through.
Liz, now that I have the EDS diagnosis, so many things are making sense! Things have been clicking, not only for me, but thinking about my father. I was undiafnosed when he passed in 1994, but I think he had EDS and lupus. There is no way to check now, but I have my theories.
What do you all think about a discussion thread for chatting?

Hugs,
Hil

[Former_Member]

WOW, that is so difficult to push through Hilary...especially in a sport oh my goodness. It's great that you have a nice sense of humor :) Lovin' the empowerment of group spoonies right now! Oh, and this is the first time I've EVER heard of the term 'spoonies'. Hehe, I like it...researched that spoonie love and it's cool. Woo! Go team!

[Former_Member]

Hi everyone! I am Jo. I am a single mother of 5 boys. My youngest is autistic. I have diabetes, Asperger's Syndrome, and MEN1 (no, I did not make up a condition called men lol.) Crafting is my therapy. I have mostly been sewing, but do a little painting and other things when I am inspired. Being able to create something and provide for my family at the same time helps me push through some days. I love nature and try to do what I can for our environment.

[Former_Member]

Welcome Casey & Jo!!! So glad you found us. I'm sorry for the reason we all came together but delighted that we have a place to share our challenges & successes! Hearing stories of both encourage me to push through the hard times and also to know I'm not alone. It's so much easier to share information with people that UNDERSTAND without having to constantly explain why I feel like this today but yesterday I was wonderful!
Hil, I think the discussion thread for chatting is an excellent idea.

Thank you all for being here,
Susan

[Former_Member]

Hi everyone!

I just joined,so glad there's a community like this! I have fibromyalgia and osteoarthritis (amongst other things).

I've found the whole Etsy thing tough. I love my craft so much that it's so easy for me to sit in the same position for hours concentrating on something, and then I suffer for it letter. I need to get better at the whole 'pacing' thing!

[Former_Member]

Hello! I too have Fibromyalgia, Osteoarthritis & other health issues.

I'm so glad I've been able to open an etsy shop that incorporates my love of vintage things with my love of arts & crafts. It's made it possible for me to "work" & feel productive.

[Former_Member]

Hello!! I am an almost 40 yr old wife and mother of 2 (19 yr old and 11 yr old). I was officially diagnosed with Lupus in February 2013 and was originally diagnosed with Sero-negative RA in 2008 (It has apparently been Lupus all along), but have dealt with symptoms since at least 2005. Happy that I have a real diagnosis and am being treated correctly now, but still coping with all the new symptoms that have popped up over the past 9 months.
Joining sites with other Lupus patients to learn all the things and ways to cope that the text books and docs don't know or don't tell you.
Thanks for being here!!

[Former_Member]

Casey, I love your attitude! I think we're stronger together than we are apart. Jo, crafting is about the only thing that makes sense to me any more. ♥ Lels, I had a really hard time with Etsy at first. I still don't have everything figured out, but if you have any questions, please feel free to ask! I find it difficult to learn new things sometimes.

[Former_Member]

Jean, I have felt the same way since I have not been able to work a "normal" job. Marisa, you can always ask me about lupus stuff - I have been dealing with symptoms since I was 13 or so. I am still learning more every day, but www.lupus.org is a good website for reliable information.

[Former_Member]

HI yall, some of yall may know me from Facebook on a little group known as LupieVille. As my name suggests, I am a Lupus Warrior, having fought the wolf for the past five years. I enjoy making handmade beaded jewelry as a hobby, it's a form of therapy for me. I am 27, almost 28 and an online full time student with the University of Phoenix.

[Former_Member]

Jen, welcome! Sounds like you have quite a lot going on! I don't know how you can handle all of that. ♥

[Former_Member]

Lorraine here, fibro, RSD, celiac but I am trying not to let all that define me. I pretty much start out the day without spoons but I am grateful for all the wonderful interactions I find here on Etsy.
I am running a 20% off coupon until July 7th to celebrate all my wonderful team members! Thanks peeps, you make my days brighter :D

THANKSTEAM20 is the code :D

[WendyReadsnWrites]

Hey, everybody - We are having a bad thunderstorm right now and I have already written a post, but it's gone, so here I go again... I'm Wendy and I have had MS about 15 years. I began to notice odd symptoms when my son was born in 1998. I have no pain with the MS just lots of stumbling and falling down along with depression, forgetfulness and loss of interest.

I am selling mostly antique & vintage stuff in my Etsy store and am always adding new things to it. I do have a Bachelor's Degree in Commercial Art and had my own wedding photography business where I also arranged flowers and created invitations. I can't keep up with all of that anymore. I am glad to know all of you ladies in this group! - Wendy

[Former_Member]

Hi everyone! I'm Sarah. I have fibro with stress and panic disorders, osteoarthritis, and hypothyroid. I've had fibro about 15 years now I guess. I just recently had to stop working a regular job and am trying to keep from going crazy by going back to art.

I sell primarily geeky things (handbags with fangirl themes) but hope to get into steampunk costuming as well. I also have some doggie items and hand knits in my shop. Gentle hugs to everyone!

[Former_Member]

Hello everyone!

Wow! A group that knows and understands the Spoon Story! So thankful!

I have complex regional pain syndrome CRPS or RSD and whatever else that is yet to be determined...

Thankful for the distraction that crafting brings, I currently make jewelry (mostly).

Thank you all for sharing your stories; it helps to know that others have similar situations and can "push through".

[Former_Member]

Hi everybody! I'm Lis, I started making jewellery when I was long term sick a few years ago. I was so poorly I didn't think I would be allowed back to work, and I wanted to set up self employed so I could still work. I did get better and go back to work, but I havent stopped crafting things since, I'm addicted. I was diagnosed with Fibromyalgia, after years (about 17 years)of being misdiagnosed and told the pain and tiredness was depression. It wasnt until I spoke to my Auntie about her FM diagnosis, that I realised I was going through the exact same thing, and I changed my doctor, and got the help I needed. I may also have chronic fatigue syndronme, although I'm not sure how you can have FM and CFS at the same time. I am not great right now, just had my meds changed as I'm falling asleep in my office again, and feel like my feet are on fire constantly, but at least I understand why now, and can think rationaly and not panic about it.

My shop is pretty empty at the moment, I make a lot of bespoke stuff for friends and family, mostly jewellery in gemstones and wire. I want to grow this little business, improve my skills and make friends. It's good to read your stories, and know that there are other spoonies, who I can relate to. xx

[Former_Member]

Hi all,
I'm a new spoonie. I'm on the autism spectrum. i have pdd, anxiety, depression, learning disabiities, dyspraxia, low muscle tone, (I'm always getting injured doing the simplest things) and lazy eye, a lot of other health issues, I've had a lot of surgeries. Ive been through a lot. I'm glad to find a special needs adult support group. I've been feeling very alone lately.

I love crafting. I sew and crochet.

[Former_Member]

Hi All,

I am a fellow spoonie and so thrilled to have found this team. I have systemic lupus erythematosus, fibromyalgia, arthritis and a few other conditions. I really enjoy all things DIY, but I absolutely love designing jewelry! It's my meditation and therapy. I believe that being able to create something (anything!) with my creaky hands and foggy mind keeps me alive. Although, I am taking a break from making jewelry because of an exceptionally long flare, I still love to be in the loop, so I created a bead shop :) I look forward to getting to know everyone better. {{Gentle Group Hug}}

Deme

[Former_Member]

<Leah. I have Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome. Began in 1998 when I was hit by a car while on Bus Duty at the school I was once an Art Educator at. It affects the nerves, bones, muscles, skin, tissue and of course ones sanity or lack there of. I have talked about it so much that right now I am finding myself at a loss for words. It has sort of in ways been "controlled" with a Medication called Prialt. Problem is that I can only use an extremely low dose because I cannot handle the cognitive side affects beyond those I have. I had to make a choice between having more pain and less crazy stuff. Which is a contradiction in and of itself. As pain makes one so crazy that it boggles even my mind how I have not gone completely and utterly insane.Very close tho-could go anytime. I have been better and did all kinds of things to have a more quality life. I have to push myself harder than is imaginable, that often I go so far overboard just for one simple thing and then the cycle continues and grows. I broke my femur this Spring and had to have surgery. Now the RSD has come back to the time in my life that I "lived" in a very dark place. I fear that it will happen again with much more vengeance, though it is hard to phantom that it could really be worse than it already has been, as the symptoms continue to re-manifest. Of course my story is much more complex.

[Former_Member]

Hi All,

Just jointed the team and wanted to introduce myself. I was diagnosed with fibromyalgia a little over a year ago and made the tough decision to leave law school when I could no longer manage both. Reading all of your posts makes me feel less alone. In my early twenties, I was a young professional headed for a world of success and now I find myself having to search for a new definition of success and fulfillment. I turned my Etsy hobby into a job and hope it will help me support my family and myself. It is still not what one would consider a living wage but it is getting better and better.

As far as what is working for me . . . I am taking Lyrica and I think it has really helped. I think I may be on too many medications but some of them have really helped. I was suffering from fatigue, brain fog, and lack of focus. My doctor prescribed me with Adderall and it has greatly increased my energy, mood, and ability to function.

I started acupuncture about a month ago and it has really helped with the pain I usually have in my hands and feet. I know it tends to be hit or miss with some people but it really works for me.

Also, I have been doing aquatic physical therapy in a heated therapy pool. I find that swimming is the only exercise I am able to do but I love it.

I am starting to realize that what I eat really does affect my pain and overall quality of life. I am currently trying to decrease the amount of processed foods I eat and eat more fresh veggies. It is hard for me to go cold turkey on caffeine and processed foods. I am taking baby steps as far as my diet and currently trying to lose some weight on weight watchers.

Overall, it has been really hard for me to accept my new life. I feel like the person I used to be was taken away and now I’m just grasping for an identity I can live with. My parents keep asking me if I am getting better but they don’t understand that this diagnosis is for life.

I hope that some of you can identify with my story and find this post helpful. I am going to try and incorporate some of the advice I have read here and I appreciate all of you for opening up.