Better than all the spoons in the world

Emma's smiles and laughter make everything better! She's better than all the spoons in the world! {look up the spoon theory} so blessed to have such a wonderful child who for two years old is already wise beyond her years. I've never seen a 2 year old worry the way she does, and it sometimes breaks my heart. 

She knows what to do when I'm having a seizure. She can sense when I'm having a bad day and on those days she tends to want to have a Caillou marathon on Netflix in bed with me :)

On one bad day she went to my cousins house so I could get some rest. I was told Emma moped around and finally asked my cousin "is my mommy ok?" When she came home she kept asking if i was ok. A two year old should not have to worry about their parent! I try to be as brave and strong for her as I can be! She's my entire world! 

Shawn & I are so blessed to have this amazing child!!!! I could brag about our daughter all day! Mommy and daddy love you chickadee!

World Lupus Day

Today is World Lupus Day! Let's POP on our Purple and spread awareness! Learn something new and educate! There is no cure for this horrible illness, but awareness is key! Lets stand together and lets get loud! Lupus Sisters Unite!

Spreading the Word

A friend of ours has a team in an upcoming Lupus walk. We said we'd help them out by spreading the word! If you're able to donate anything at all, that is a HUGE help!

Walk To End Lupus:

The walk is June 14th, 2013
Team Name: Livin La Vida Lupie

 As of right now they have had one donation so far. Please if you can donate ANYTHING at all please send it via to Paypal livinlavidalupie@gmail.com, Rosie Thimmes is also working on setting up a donation page, through the LFA's site.
They need everything they can get, even if you can only afford a dollar, it'll help! The money is going through the LFA to OSU for research to help find a cure for lupus! They can always use team members, but we need as many donations as possible. They will be doing raffles and auctioning off goodies to raise money too!

Lupus Sisters Awareness Bracelets

We recently took orders for awareness bands that say Lupus Sisters on them. They look great and all the money that doesn't go towards buying them & shipping is getting donated to The Lupus Foundation!

We will be taking orders once a month for the bracelets. They're $4.50 each. If your interested in a bracelet email us at LupusSisters@gmail.com subject: bracelets. If we're currently not ordering them at that time you can be asked to be put on the waiting list for the next month! I'm currently taking names down for people who would like to be on the waiting list for June.

Stressing and Seizures

Health insurance is sometimes to expensive for a person or a family to afford. So when you're chronicly ill or just sick very often having Medicaid or Medicare are very important things to have. I started on Medicaid in 2010 and had it all the way to January 2013. They turned it off because I was late turning in some paperwork (you can't mess around with Medicaid!) so after jumping through hoops and my husband giving some people a talking to I got my Medicaid turned back on last month! I was so happy I spent the whole rest of the next morning on the phone calling around for doctors that took Traditional Medicaid. After a few hours and a short break I had finally made an appointment with all the new doctors I needed to see. Sadly when you're a new patient you have to WAIT A LONG TIME for you first appointment. I won't be able to see my new PCP until July 31st & my rheumatoidologist until August 6th!

Everything was hunky dory until one day this past weekend... I was taking a nap and during my dream there was an announcement, and then they repeated the announcement except the second time it was different it said, "Melissa Clements is denied Medicaid for the following reasons...." I woke up saying "WHAT THE F***?!" To my husband reading two letters out from Medicaid. One for me and one for our 2 year old both saying we were getting kicked off Medicaid because we weren't Indiana residents!!!! I'll be 25 years old in August and I can truthfully say I've lived in Indiana for all 25 years!

Of course after reading the letters the Medicaid office was closed until the next Monday. My husband works A LOT! I mean seriously A LOT! When he is off his work phone rings 24/7. So we were excited when he actually got a four day vacation this past weekend! And wouldn't you know Shawn, Emma and I all had to go to Urgent Care for sinus infections! So we're all three really sick, and to top it off I was so stressed because of Medicaid that I couldn't sleep and we lost count of the amount of seizures I had in those few days. The seizures varied from petite to grand mal and I was pretty much stuck in bed or on the couch.

My husband called Medicaid today and when he texted me back that it was all fixed and it was just a paperwork mistake I was so happy!

I know doctors tell you all the time to avoid stress. I want to laugh in those doctors faces, and tell them to live a day in my life!

Love & Spoons,
Missie 

Brain Fog

As I sit here at a blank screen trying to figure out what in the world to blog about it hits me. BRAIN FOG! We all have "Lupie Moments" where we can't think, can't remember. Like now I'm still having a hard time trying to describe brain fog!

Brain Fog affects people of ALL ages and is described as confusion. You feel lost, confused, forgetful and even maybe depressed. Not only people with Lupus have brain fog; it's actual a very common problem, and for some reason isn't really recognized by people in the medical field. There are tons of reasons you could be experiencing brain fog, the most common are emotional, biochemical or physical. If you're to weak and can hardly focus thats a type of brain fog.

So how do we try to avoid these foggy moments? Most times it's inevitable, but a lot of people think that if you "exercise" your brain it'll prevent these moments. By exercising your brain I mean do crosswords, puzzles, or even math (ugh I know).

For me I have a hard time remembering the simplest things! The other day I had a ten year old correct my math while playing a game of Monopoly. I have a hard time remembering memories, what I was saying during a conversation, I can't remember math at all (needless to say my husband is going to be in charge of homework once Emma is old enough for school!), I start down an aisle at a store and have no idea why I was going there. I think my seizures, that have lasted for almost 4 years now, are aiding my brain fog. While having countless seizures I'm pretty sure I fried some brain cells.

Brain fog is stressful. Can make you very angry, depressed, or both. I get so stressed some times I feel like I'm going to explode with anger! At those moments I tell my husband I need to seriously be alone and he and my daughter leave me alone until I cool down. I'll usually take a nap or loose myself in a book to de-stress. If it's to bad I take 5mg of Valium, but I don't recommend depending on Valium EVERYTIME you feel angry or depressed. Valium is VERY addictive! Talk to your doctor about appropriate times to take or not to take as needed medication!

Comment below and tell us your most memorable mistakes that have been caused by brain fog.

Love & Spoon dust <3 Missie