A Few Things...

This post is just gonna be all filled with a bunch of stuff. So get ready for a fun ride with my ADHD brain. :)

First off!!! I am excited to announce that my first guest blog went live on Wednesday!! You can find it at Riot Against...

I am incredibly excited to be apart of the Riot Against... team and writing with them. I am honored that they thought I would be a good fit for their team and that I get to join them on sharing our experiences, journey's, and awareness for our conditions. I am truly blessed and honored.

Alrighty! Moving along... Next stop, Thanksgiving!

I had a WONDERFUL Thanksgiving!!!! For those that celebrate the most amazing gluttonous holiday of all time, I hope you all enjoyed it too. :) I had lots of family and great food! I made my homemade pierogis (which takes roughly 4 hours to make... So I'm pretty much doing a lot of nothing today to recover). My family even did the dishes! I didn't even ask them to! It was amazing. They said because I hosted, they would do the clean up. Which let me tell you... I super appreciated! If they hadn't done it, it would still probably be a huge mess today.. And I honestly don't even know if I would get around to cleaning it up. So YAY!! It's done, and it was great. :) We fried our turkey and it was DELICIOUS!!

I ALSO wanted to say that the Ehlers Danlos Awareness shirts and hoodies have been sent to the printer and should be arriving with you all soon!!! I'm so blown away that you all like my design! It is seriously super awesome to see people wearing a shirt/ hoodie that I designed. Thank you all for your support! I cannot express enough how honored I am. You make me smile. :)

OOOHHHHHH!!! I was recently contacted via facebook from a fellow zebra... And she told me how much she loved my blog. It seriously made my day. She was soo sweet (and obviously knows good writing when she reads it) and it really made me feel like I was making a difference. She said her whole family reads it, and she is able to relate. It also shows her family that she isn't just crazy because I go through this stuff too.

I started this blog in hopes of relating to others that may feel alone, AND so that I don't feel so alone. Knowing other people experience the same weird shit really just makes it easier to go through the weird shit..

Anyway.. I know this post is kind of just a bunch of points. But I promise, I have a normal post in my mind I will write out later..

Gotta get my littles outside and burn off some energy before make my head explode!! That would be a huge mess and "Ain't nobody got time for that."

Makes me laugh every single time...

Here We Go Again!

Well.... The t-shirts and hoodies have been requested again! I have reopened the original campaign and created a new one also with the same design but in different colors.

The links are (for the original colors/design)

Fight Like A Zebra

Same design, new colors are Here

I hope you all like them!

They have all passed their minimum and all will be printed. So don't worry about not getting it if you order. :) only a few more days!

Ship US, Canada, and International.

(Here are some of the colors available. More available than shown!)

Let's Add Another To The List!

So I met with my gastro the other day.. We talked about my EPI (exocrine pancreatic insufficiency) and my other symptoms..

First off I must explain, I stopped taking the enzymes for a while because I was getting SUPER bloated! And gasp!! Constipated!

And I mean it was so bad to the point to where I couldn't even breathe or lean forward or sit comfortably... Or really anything...

It was just super uncomfortable and I just didn't want to do it anymore.

But! The enzymes were working in the beginning. So I wasn't really sure what was going on. So I talked to my doctor and he said that now that they fixed the enzyme problem and I'm actually absorbing nutrients now that part of my digestion its fine. But, if I'm experiencing more symptoms, then there is ALSO something else afoot. Blast!

So...... We talked and he diagnosed yet another disease... Gastroparesis.

Ugh. Adding another to my list.. Which is already long enough that I forget some of the things on there.. I should really write it all down in my phone or something.

In the beginning, I remember getting so upset about new symptoms or diagnoses.... But now. I think I don't even care anymore. I mean, my whole body is slowly breaking down... So what is another thing, really?

Now I have a new pill to take.. I set my phone alarm to remind me when I need to take it (because I'm super forgetful.) throughout the day.

It's been a few days now and I honestly have seen a huge improvement!!!

I didn't even remember what it was like to NOT be bloated.. And now, I can breathe when I eat and lean forward (which I have to do because my back is too weak to support to my body for long periods of time.. like the 20 minutes it takes me to eat..)

I'm actually a bit relieved to have this diagnosis. While it's just another on my already long list, it's something that can be improved and I'm grateful for that.

It's been tricky planning out when I take my enzymes and the meds for gastroparesis, but the alarm does help. I even wrote in as a "title" which one I take and what I need to do when it goes off. Especially since I now need to change the times I eat and have to eat around different meds and what not.

It will definitely take me time to get used to, but I'm getting there. And honestly, the improvement I've already seen is enough drive to keep me going!!

Anyone else get something new added to their list lately? How are you handling it? Are you upset or just indifferent about it? Let me know in a comment below! :)

Will You Stop That DAMN Tapping!!

First off!! Exciting News!!

Soooooo!!!!!! I have been asked to be a guest blogger for another website! How freakin exciting???!!!!! I mean.. I've only had this blog like a month and a half!

It will take about a week before I am up on the site.. But I am excited about the opportunity. I feel honored. When I am introduced and my blog is up on on the other site, I will post it so you all can go and read more of my rantings.. I know you're all super excited. It's okay. Let it shine!

Anyway.. On a less exciting note.. My oldest daughter got a stomach bug... She was up all night throwing up.. And because she is only 5, that meant I was up all night.

I know for some people, sleep almost never comes. I had insomnia when I was younger.. So I can sympathize with you all.. But I don't have it anymore..

Actually... My sleep study doc thinks I may have narcolepsy. Lol. Who has narcolepsy?! I laughed when he told me.. But then I looked it up and it actually doesn't seem so far fetched an idea.

So obviously.. I need to sleep. A LOT! I am ALWAYS tired!!! Always!

And I'm usually in bed and alseep by like 10-10:30. So not being able to sleep last night till like 3 in the morning... And then waking up at 6 something with my youngest.. I'm seriously sleep deprived and exhausted..

Which of course, my Chiari is angry with me about.. Chiari likes sleep... She's a bitch that way. She is getting back at me with a crazy intense headache, horrible neck pain, more intense tremors, weakness (especially in my legs) and more dizziness.

It's been a fun morning.. I have a mountain of laundry to do because my daughter didn't know she was gonna hurl all over the fucking room.. Or her bed.. Or herself.. I still haven't gotten the smell out of my nose... :( It's horrible. She is still very tired but hasn't thrown up today so I think the worst is over..

I would still take all her pain away if I could though. That's what moms are for, right?

Well.. I should probably be going.. I'm not even sure if this post makes any sense at all... And I' starting to hear things... I hate hallucinating! It's creepy.. Too bad they couldn't be cool hallucinations like smelling fresh baked cookies.. I get weird creepy auditory ones that sound like tapping, bagging, knocking, and scratching sounds. Super annoying to say the least!

I keep looking around the house thinking I'll find some serial killer ghost or something.. Ah the things a sleep deprived mind comes up with.. Maybe it has something to do with the fact that I was watching "See No Evil" and "Saw II" last night to help keep me awake...

I hope you are all having a good and stable day! :)

(At least my yesterdays make up still looks pretty decent. Ah, the silver lining....)

I Think I'm Dying....

That's how I feel anyway. After last night (Halloween) and walking through the ENTIRE neighborhood, I'm exhausted!

The kids had a ton of fun!! It was worth all my pain!

I really should have brought my cane though. I meant to, but forgot it in the rush to get out the door.

My kids were soooooooo excited and I was getting frustrated because they weren't listening very well. So I was just trying to get out the house and get everyone in the car so we could go to my mother-in-law's neighborhood! It was a lot of fun though. A couple of their friends went with us. It was a lot of fun!

They were so darn cute! But I am definitely paying for all the fun today..

Isn't it a bitch!? You go out to do something you rarely do, knowing you'll pay for it, but do it anyway. Some things are just worth the "been run over by 5 trucks" feeling.

Sometimes though, it wasn't worth it... And then you're just mad that you did because it wasn't worth feeling death for days after..

It's sometimes really hard to judge out if it will be worth it or not.. But usually, I'm pretty good at knowing. Learning your own limits can be challenging though. Especially in the beginning... But it gets easier.

It's weird for me and often confuses other people because some things are still easier for me to do than others. Like standing. Standing HURTS SOOOOO BAD!!! I don't know why... But I would rather be walking or pacing or something rather than standing. But then I can't walk too much or that hurts too..

There is a fine line. But then sitting hurts also. I can sit for about 10 minutes and then I need to move or readjust the way I'm sitting (if I'm not allowed to get up or recline, like in class..)

But I went and did this zip lining course with my mom a couple weeks ago (which was SUPER fun by the way) and it had all these obstacles to get through up in the trees. We took our time and I made it through the entire course with relatively minimal pain... (I mean.. it hurt a little, but not too badly that I was angry I did it.) It was a little sore for the 2 following days, but overall, I did well and it was well worth it!

But I actually have more pain and discomfort today from walking around trick or treating than I did from the zip lining course..  

And it's hard to explain to people that know walking is painful for me, that I can do that course and feel pretty okay. It's hard to explain how different it is..

It's also hard to explain that I really don't know how I will feel from minute to minute. I knew my legs were weaker yesterday than they were the zip lining day also. So I knew it would be worse. But to explain that to someone that doesn't experience it.. To have them understand that I just know I'm not going to feel well after doing something.. It's hard for them..

And to be fair. I get it. It seems like a cop-out for things you don't want to do.. Like cleaning the house.... Or grocery shopping.. Or really anything that just sucks.. I understand how others that have never felt what I feel don't believe me 100%.

I mean, honestly, if I were a perfectly healthy individual, and someone told me they couldn't do the dishes (which seriously suck for me because of the standing) because they are hurting; but wanted to go bowling.. I would a little skeptical also..

It's all about balance and honesty with your loved ones.. But there is a line.. It takes time to learn for everyone involved. Chronic illnesses don't only affect the patient. They affect everyone in the patients life.

Anyway.. I hope you are all able to rest up today if needed and that you are all enjoying your weekend!

What are some of your "run over by a truck" activities? Do you ever experience skepticism from others? How do you handle it? Comment below! :)