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Spoon Levels: Critically Low

9/24/2018

5 Comments

 
Hey everyone. I've been falling behind on some things recently, and before I go into why I've faltered I'd like to apologize to you all.

You folks spend your time and hard-earned money on the pretty things I create here at Lucky 13, and I'm sorry there are times when it takes too long to ship out or I don't respond to messages quickly. I want you all to know I appreciate all of your continued support and understanding so much more than words can say.

Secondly, I'd like to apologize for not being as honest about why I've fallen behind as I'd like to have been. It feels weird to talk about my disabilities, but since it's recently heavily impacted my ability to work I think it's time to stop feeling embarrassed for silly reasons.

I've been experiencing chronic joint pain for the last 7 years, since I was 23. I've seen over a dozen doctors and every one of them has said there's "nothing wrong" with me and sent me away to wonder if it was all in my head. I'd spend hours looking for something that explained my seemingly random symptoms, but nothing fit 100%. In January 2017, I was diagnosed with Fibromyalgia, and I began trying to accept that pain is simply a part of my life now. I've talked about this before, and having friends who understand is helpful, but I still wasn't satisfied with the answer so I kept looking.

Earlier this year, I came across another explanation that really made sense. It explained some of my "silly human tricks" I've been doing since I was a child, the weird way I've always sat (until my pain caught up with me), even why I bruise so easily and my scars look different than other peoples'.

I have Ehlers-Danlos.

What that means is that my joints don't know where the hell they're supposed to be hanging out, so they can partially dislocate (called subluxation) or even fully dislocate at any time. Also, my collagen doesn't heal well so my joints wear down faster than they should. This is a really painful thing to experience in one joint, let alone half a dozen across my whole body. On the up-side, my skin is as soft as a baby angel's buns. While my body feels like I'm 200 on the inside, I'll look like I'm in my 20s for decades to come. Silver linings!!

However, the pain on top of anxiety, depression, and bi-polar mood swings can make it a struggle just to want to keep going every day. Some days I just feel like a hopeless and broken human. I've had a lot of those days recently.

Waking up after a restless 6 hours, stuffing myself to the eyeballs with coffee, working in pain all day (and only achieving partial efficiency because of it) before collapsing to start the cycle again the next day has been driving me insane. I'm trying to maintain a better balance of efficient work and rest, and I'm learning.

I can honestly say that getting to "play with glitter" for a living is not something I take for granted, nor is success something I inherently deserve. But I want to continue working hard for it, every day that I can.

​Thanks for reading all of this <3
5 Comments
Leslie S link
9/24/2018 02:13:36 pm

I have hyper mobile joints too! It's mostly in my hands. I've held a pen with my thumb bent backwards my entire life and a few years ago it finally caught up with me. My son has inherited this from me. Thankfully, I don't believe I've ever had dislocated joints or anything that severe. Being in pain sucks so bad. I can't imagine dealing with the kind of pain you are experiencing. 🌷

Reply
Anya
9/24/2018 05:21:42 pm

I also have my pen weird, it should've been a bigger red flag IMO. I'm sorry you know the feeling, and that your kiddo does too. Knowing makes it easier to be careful, at least!

Reply
Heidi Mattos
9/24/2018 04:58:18 pm

Girl, I totally get you! I’ve had joint pain for years which affects all parts of my life, and I had the same experience doctor after doctor. Last month, a rheumatologist noticed that my joints hyperextend, which is something I’ve always noticed but I guess no doctor had or had given it importance until this one. After reading and doing lot of research, everything just fits and makes sense. What sucks is that both of my children also have hyperextending joints, my son’s being more extreme. At least we know what we can do to prevent the damage that I’ve caused my joints, so that they don’t experience the pain, or as much pain, as I have. Hang in there, Anya! Just know that I understand and know some of what you’re going through.

Reply
Christine
9/26/2018 08:31:48 am

I don't have any chronic pain but do have a crappy neurological condition. Living with daily assaults on your body is exhausting. And I also suffer from depression and bipolar. I think that is worse than just about anything else. It makes coping darn near impossible. And the icing on the cake is that all of yours and my illnesses are invisible, which makes getting support and understanding next to impossible. Hang in there girl. You are not alone. Bless you.

Reply
Sandy Lewis
10/11/2019 01:09:14 pm

Like you, I was diagnosed with fibromyalgia in my 20’s; actually fibromyocitis. Unfortunately, it was actually Rheumatoid Arthritis, which went undiagnosed for 30 years. RA can affect tendons and ligaments as well, and I don’t gave “RA Factor” present in my blood. Know your body, symptoms and be your own advocate always!! The depression symptoms got MUCH better for me after menooause, altho that will be a while quite a while for you. Still take antidepressants every day, but am extremely stable at 63. Absolutely love your”Lotions if Immortality” and make sure that I never run out! I think you ate amazing and creative and incredibly productive considering what you are dealing with. I also look 20 years younger than I am(😁), but sometimes that makes it more difficult for people to understand the inside battles.

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