Monday, July 17, 2017

Lessons from my Chronic Illness


Living with a chronic illness means your life might not be how you thought it would, maybe not even how you want it to be.  It takes time to adjust but here are some of the things my chronic illnesses have taught me.

1. Doing nothing is a perfectly fine way to spend your time.

I always used to feel like I had to something "productive" every day, even when I was sick and it always just ended with me getting worn out and, consequently, even sicker.  I have learned that sometimes the best thing I can do for myself is rest and relax for a day, or even a week, instead of overdoing it.

2. You have to take care of yourself before you can take care of others.

I love to help people.  I want to do everything I can do in the world to make it a better place for everyone to live in.  Even without a chronic illness that is too much work for one person.  I have learned that I can't help every single cause in the world and that I can't help any cause if I'm too sick or tired.  I take care of myself first and then use extra energy and time to help others with chronic illness and/or mental health issues through my handmade jewelry.

3. Self care is wonderful for your mental health.

When my depression starts creeping in, despite my anti-depressant medication, I make sure to do some small act of self care.  Sometimes I even have to force myself to do it, or have Jordan get me to do it because I just don't want to, but after I do I feel a little bit better.  If I can notice as soon as the depression starts creeping in forcible self care helps me chase it off instead of sinking into the pit of despair.  If my depression goes too long unaddressed I'll feel like I don't even deserve to be happy or feel better so it's way harder to make myself do things to make myself feel better.

4.  Make the most of each good day and they will help you make it through the bad days.

The good days help the bad days more bearable.  I look for the good in every day because there is some good in every day, no matter how sick or tired you get.

5. I am so much stronger than I ever realized.

I have been through so much and I'm still here.  I have been through days, months, years that healthy people could never dream of.  I keep going because it's that or sink into depression and then still be sick anyway but feeling even worse because of depression.  So I make the best of each day and remind myself of all of the things I've made it through in the past.

6. There are going to be hard times but I'm not going through this alone.

The chronically ill community on Twitter and on Instagram have helped me through so much.  I feel so much support from everyone who is going through their own stuff and I hope I can help them through their hard days too.  We are stronger together.  Chronic illness is not a competition.  Everyone's pain is valid because they feel it.

7.
To accept my life with its ups and downs without feeling like I got ripped off or it's not fair.

I can still have a good life, and a happy life, even though I have a chronic illness.  Chronic illness is so tough but I wouldn't trade my life for one without it.  My chronic illness has made me the person I am today and I don't want to know who I would have been without it.


Sunday, July 9, 2017

I Don't Have FND?

So on June 26 this happened:



And now I'm thinking that I definitely don't have FND, functional neurological disorder for those of you who haven't seen my last post.  Basically FND is caused by stress and your symptoms get worse when you're more stressed.  I was extra stressed on the day that I started being able to walk again and I've been able to walk ever since.  I definitely overdid it on the day I started being able to walk again, but I don't regret it.  My legs were so sore the day after that.  I've been walking just a little bit each day and using my wheelchair the rest of the time so my leg muscles can get built up slowly.

As far as what I have that makes my legs stop working sometimes?  I don't know for sure but it seems like gluten ataxia could be the culprit.  I thought that I just discovered gluten ataxia on June 26 of this year but a look back at my Facebook page showed me that I learned about it last year and then I completely forgot, because brain fog.  As far as brain fog is concerned that lifted too when I started being able to walk again.  If you've seen those Claritin clear commercials it's kind of like that.  The world was just in a fog all of the days that I couldn't walk and then on the worst brain fog days it was more like being underwater.  So now I am relearning how to walk and trying to get my stomach nonsense figured out.  I have a gastric emptying test on Friday and have been eating mostly only liquid foods for a month because solid foods haven't been digesting.

Sunday, May 14, 2017

Processing my New Diagnosis

I have a diagnosis: Functional neurological disorder

"Functional neurological disorder (FND) is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts. The brain of a patient with Functional Neurological Disorder is structurally normal, but functions incorrectly." - Wikipedia

Basically what's happening, as the neurologist explained it, is my brain stopped sending messages to my legs for some reason. She said it's like if your computer freezes and you have to reboot it. I will be going through a process of both cognitive behavioral therapy and physical therapy to identify stress triggers and learn how to respond to them and also to learn how to trick my legs into doing what I want them to. It may take a very very long time but it is possible for me to get better. I am definitely willing to put in the work required.

I've had this for at least 6 years so it will take a long time to get better, maybe even years.  And it's weird to me because I should be happy that I can get better, and I am, but at the same time I had accepted the fact that I may never get better and I even believed that I would never get better but I was okay with that.  And I was used to it.  I connected with other people like me who have illnesses that there is no cure for.  And we supported each other and helped each other through the tough times.  And I still have a chronic illness but I kind of feel guilty because I can get better but so many of my friends can't.  It's almost like I don't know who I am anymore again.  I have gotten used to being sick all of the time and as weird as it sounds a future where I'm healthy seems a little bit scary.  I guess that's my anxiety and my difficulty responding to change.  I think that what scares me more is that if I don't get healthy then it's kind of my fault.  I'm honestly still processing everything and there are a lot of emotions involved and I don't understand all of them.

I am very grateful for all of the people who support me no matter what happens, for the community of chronically ill people who include me despite the specifics of my illness.  One of my first feelings was that I don't know where I fit in anymore but they assured me that I fit in there no matter what happens.  My immediate future holds a lot of pain, ups and downs, but also hope.  And all of the people who are happy with me during my ups and encourage me during my downs will help me get through this.

Monday, March 6, 2017

Easy Ways to Practice Self Care

If you've been on the internet and have a chronic illness or mental health difficulties (or even if you don't) you've probably seen people talk about self care.  There are all these lists of things you can do to take care of yourself and help yourself fell better over time.  And they're good suggestions and they do work, but here's the big issue: you have to be motivated enough to do the things.  When you have a chronic illness and you're having a low energy day or when you have mental health issues and you're lacking motivation it's really hard to actually do those things on the lists.  Real life example: yesterday my depression was pretty bad and my anxiety was really bad.  In my head I knew that self care would help me but I also lacked the motivation to do any of those things, such as make myself a cup of tea, do a face mask, turn on my favorite music, so I didn't do any of it.  The other huge problem is that when you're really depressed you might feel like you don't actually deserve to feel better so you just won't do anything that might help you feel better.  For these situations I have come up with a sort of self care cheat sheet.  This is a list of the easiest possible things I could think of that can help you feel just a little bit better.  It's great for low-energy days or days where you're lacking motivation.  I am personally going to try to do at least one of these things every day.  Some days you might be able to do every single one since they're things that don't require a lot of energy or motivation, and none of them cost any money!  So here it is, my list of small ways to feel a little bit better every day:

Drink water, go outside if even for just a minute (if you can't bring yourself to go outside, look out a window at outside for even just a minute), do something nice for someone else (even if it's just sharing someone's post online with your friends), take deep breaths when it gets difficult, rest when you need to. If you didn't do so well today try again tomorrow. Remember you're not alone.

Wednesday, February 15, 2017

Life Lately #1

I'll be posting these every so often as a sort of check-in post to share what I've been up to lately.  These photos are mostly from my Instagram.


sketches of my crystals


new fashion: damask Nightmare Before Christmas long sleeve shirt that is so soft, and wheelchair gloves

my "office", love these big windows

bookshelf! still waiting to find the perfect bookends

one of my woven projects; originally made this for a friend but I tied it too tight at the ends, after taking this photo, and it squished the feather so I kept it instead

new products in my Etsy shop: spiral end hair pins and bracelet helpers

organized my stones and re-discovered some real beauties from before I knew stone names, including some on my wishlist: ocean jasper and crazy lace agate

one of my favorite decorated spaces in our new apartment; don't you just love the brick walls?!  This is my woodland animals corner with a ceramic owl, metal deer, sculpted wire bird and a rabbit skull

We moved in October and I love our new apartment so much.  The natural light makes taking product photos super easy, and I love how there is actually a space for all of our stuff.  We have so many cupboards and closets!  And the bathtub has made my life about 1000% better every day that I have super sore muscles.  I need to get more bath bombs though because I have used up just about all of the ones I had.

Tuesday, February 7, 2017

Makeup Favorites

I rarely wear makeup because certain conditions have to be met so I can.  In order to put make up on for the day I have to be staying at home and not planning to do a whole lot that's productive.  I have very little energy on a daily basis and most of it gets used wheeling myself around the house throughout the day in my wheelchair.  Most days I save the extra energy for working on my Etsy shop.  On the rare day that I have to leave the house I save my extra energy for riding the bus and interacting with people.  But on a day where I have nothing to do but relax and watch Netflix I like to play with makeup.  I don't have a whole lot of makeup.  I don't have any blush or bronzer, but I do what I can with what I have.  On those low-energy days it's always nice to look in the mirror and see my made up face and not feel quite so worn out.  Since I don't have a lot of makeup I don't have a lot of favorites but I do have a few, so here they are.

Brija Cosmetics:  a small business where all of the makeup and skincare products are made by one hardworking lady; everything is 100% vegan, gluten free, cruelty free, and dye free

The first thing I purchased from Brija Cosmetics was the blogger pack, which included four mystery products and one full-size eyeshadow of my choice.  I was immediately in love with the products.  They are so pigmented and wear wonderfully.  They never make my skin break out worse which is super important to me.  I purchased the Halloween Heroes(ish) Eyeshadow collection next and it is amazing.  First of all, the products are all based on characters from some of my favorite movies like Coraline, Hocus Pocus, and The Nightmare Before Christmas.  Second, the shadows are super unique shades but very versatile.

If I had to choose my favorite products from Brija Cosmetics that I've tried so far I would have to pick Lace Dresses eyeshadow, Glorious Morning Magic eyeshadow, and ESPN highlight.  I highly recommend all of three of these.  They're the ones I reach for just about every time I wear makeup.  Brianna is always coming out with new collections and her new Glamour to Go 2 collection is definitely on my wishlist.  I'll definitely blog about any products I buy from her in the future.

Glorious Morning Magic


Moon Glimmer Cosmetics: This is a cruelty-free makeup brand on Etsy.  Jordan's mom bought me a really pretty highlight from this shop and I love it.  It's the Persephone shade from this listing.  They also have it as a pressed highlighter if you like that better than a loose powder.  It is an absolutely gorgeous color.  It's super pigmented with great reflect and lasts all day.  I love swiping a little bit on my cheeks and feeling just a little bit magical when I see my reflection.  This shop has so many gorgeous shades of eyeshadow and highlighter and I definitely want to try more.  I am all about a good color reflect.  There's even a shadow that reminds me of my favorite stone, labradorite, with a grey base and stunning blue reflect.  That one is definitely on my wishlist.  Seriously, is it not stunning?


So those are really my only makeup favorites at the moment.  Some of the things on my wishlist include a good liquid foundation, the Real Techniques diamond makeup sponge, and Tarte lipstick, as well as pretty much any blush and bronzer.  I just signed up for Glambot so I have my eye on a few products there.  If you don't know about Glambot it's a site where you can sell certain kinds of makeup as well as buy makeup.  The makeup they receive is thoroughly sanitized before they sell it and it's a great way to get some cash if you clean out the makeup you don't use.  You can use my referral link to get $10 to use when you sign up.

Thursday, February 2, 2017

Online Shopping for Special Diets

I was going to talk about Vitacost in my post about my favorite discoveries of 2016, but it really needed its own post, so here it is!  I actually learned about the amazingness that is Vitacost.com through the Youtube channel of the girl who makes Brija Cosmetics.  She had a video with a gluten free Vitacost haul of some really yummy looking foods and I had to check out the site.  I had heard of Vitacost before, but I thought it was an online drugstore type of site and it is that but so much more.  If you have any kind of specialty diet you can sort their groceries by those, and even more than one at a time!  For a few months I went without dairy entirely because it seemed to be upsetting my stomach, but then I learned that it's really just everything upsetting my stomach again (but that's not really important here).  During those months I loved being able to go to Vitacost.com and filter the food so I was only seeing things that were gluten free and dairy free.  They have the most specialty diet filters I have ever seen on a website, including Chemical Free, Soy Free, and Yeast Free.  There are so many products and they're always a lower price than anywhere else.  They also have sales all of the time, and every time you order you get a 10% off discount code for your next order.  I am not sponsored by them in any way; I just seriously love their site and know others can benefit from it too.

I think I've ordered boxes of food from them six times since discovering the site halfway through last year and I have also ordered my vitamins from them.  If you're gluten free these are my must-try products from Vitacost:

Vana Life Foods legume bowls, Pamela's Whenever bars, Seapoint Farms edamame snacks, St. Dalfour French Bistro beans and corn, and Daiya dairy free mac and cheese.

if I had to choose just one favorite this would be it

Tuesday, January 31, 2017

How I Spent My Christmas

Jordan and I had a nice little relaxed Christmas.  I had been sick and in bed with a cold for the previous two weeks and my parents' house had tons of snow so we didn't travel.  We didn't really do anything for Christmas other than opening presents.  We didn't have a tree either but did hang the few ornaments we had on our coat rack.  I got some amazing Christmas presents from my parents and from Jordan's parents.  Jordan and I exchanged gifts way before Christmas because we just can't wait when it comes to giving each other presents.  He got me season 1-6 of Adventure Time and I got him some chapsticks, including pizza flavor which he adores.  They're from Etsy and the scents on these are seriously so spot on, it's amazing!  Check out all of their chapsticks in their shop.  The peanut butter and marshmallow fluff and the strawberries and champagne are also amazing scents.  Besides that I only had enough money to get my little cousins handmade blanket scarves and none of the adults in my family presents, because I am forever broke.

I got a lot of presents and only photographed a few but here they are:

the cutest fleece lined leggings from my mom, love them so much!

an aragonite crystal for my collection from Jordan's mom, so pretty!

These adorable buttons from Etsy; they didn't open and close properly but after some fiddling with my jewelry pliers they do.  They are honestly so cute and maybe this was just a bad batch but I'm not going to link to the shop because of that fact.

Sunday, January 29, 2017

My 25th Birthday and Etsy Sale

Yesterday I turned 25.  For my birthday I got dressed up and did my hair and makeup and then I stayed home and relaxed.  I was going to watch Tim Burton movies because that's pretty much my birthday tradition/favorite special day activity but Jordan and I got about halfway through Ed Wood, which we had never seen, and then fell asleep.  I just wasn't feeling movies a whole lot yesterday.  After our nap I watched a whole bunch of 2 Broke Girls and finished season 1.

My mom sent me a bag full of Christmas (haha, I mean birthday) presents and I opened them all yesterday morning.  She got me some jewelry supplies, 2 king size Pay Day candy bars, and an amazing adult coloring book (by this great artist lady, it's the Lost Ocean coloring book) with a pack of twist up colored pencils.  Jordan got me the new Dropkick Murphy's CD for my birthday but I got it the day it came out as a great surprise from him, because he pre-ordered it for me.

I intended to have pork chops and dairy free gluten free Daiya mac and cheese for dinner, but the pork chops hadn't thawed so I'll cook them today instead.  I had mac and cheese for dinner and treated myself to a Toblerone bar.

All in all, it was a pretty laid back birthday but it was great and exactly the sort of birthday I like to have.  Here are my pictures from the day:


I had Jordan take photos of my hair since this hairpin is a new item I'm making to list in my shop.
The thing that I was most excited about my birthday for is my annual birthday sale in my Etsy shop.  Every year I have a sale for the percent off of the age I'm turning, so this year for five more days everything in my Etsy shop is 25% off.  Here are some of the things on sale, all handmade by myself: