May 10th: Wear Blue & Gather in Memory of Laura

Here's what you should do:

First off, you should wear blue in honor of May being Arthritis Awareness Month. Paint your nails or dye your hair or whatever you want to do with it.

Second, what are you doing at 4pm UK time? That's 11am ET in case you're confused.

On May 10th, a bunch of us who knew Laura of Still's Life are getting together on a page dedicated to continuing Laura's mission of raising awareness that her fiance's mother runs called For the Love of Laura. We're getting together for 10 minutes in memory of Laura being gone five months. If you were touched by Laura in any way, please stop by even if it isn't during that 10 minute time frame.

It seems like every day is both harder and easier to deal with the grief of losing Laura. How does that even work?

Day 29: Congratulations #HAWMC

Today I have to share three things I love about myself, things I'm great at, or just want to share.

Damnit! This is hard!

1. I like my eyes. They're gorgeous and would be on anybody. I like that I don't often have to use mascara because I have great lashes. It clumps up too much to be comfortable and aggravates my eyes anyhow. I love that I can just slap on some brown eyeliner and go and look pretty, even if it isn't as gorgeous as my full on retro makeup look.

Um...

2. I love that I can tell I've lost weight. Technically it is only a few pounds, but I know I'm building muscle at the same time. I've lost space. I catch myself in the mirror and think that I look sexy and attractive for the first time in a long time. My style sense is getting better too. I'm sure part of it is actually buying clothes that fit me better now instead of always resorting to XL baggy tees. I'm moving down to the L range and I intend to stay here for a while.

And...

3. I'm not too shabby at being there for people. I might not always physically be there but I'm more often than not a text/tweet/phone call/email away. It may take a bit for me to notice you need me, but then I'm all like BAM! Tell me your problems!

And just to add another one, I'm not bad at taking pictures. We have a bunch of them up on our wall that either the fiance or I have taken. I love taking pictures and editing them to get cool effects. Want to see? Of course you do!

The fiance took this in 2010, Oregon coast

Summer of 2009 taken by a friend, me & my sister

A random grave in Western WI or IA

The confederate graves, Forest Home Cemetery, Madison WI

Abbott's grave, Forest Home Cemetery, Madison WI

Day 27: A book a book! #HAWMC

I don't think it is any surprise that my book would share the title of my blog.

Oh, is this the first you've heard about the book?

I am going to be working on a book that is a collection of stories of kids and adults living with this disease in Laura's memory. We have to find ways to raise awareness and help those dealing with this disease, so what could we do better than to collect these stories to help others?

Are you interested in learning more or being a part of this project? Feel free to email me at kirsten -at- notstandingstillsdisease -dot- com.

Day 26: Pain-free pass #HAWMC

There are many days where I fret over the consequences of any actions I may take. The pain from Arthur and the house guests he's brought along has caused me to miss family things and special events not to mention the pains and emotional effects of being in pain so much. Out of every single day in my life, there is one that I need to be pain free.

I'm getting married August 16th, 2014. It is my great grandmother's birthday, though she died due to MS over a decade ago. She was strong and feisty, and I wish she would have been around as I grew older. But I digress.

I've already put 6 months of planning into this day, with 16 months to go. We have a venue, a dress, and the cakes chosen with deposits paid. We have so much to do, but we know I have a lot of time to do it in. The day before we will have to decorate and get things set up and ready to go. I don't even have any idea how I'll sleep the night before.

I just want to be painless, just for this one singular day. I want to be able to enjoy my day and my wedding without having to entertain Arthur like the drunk uncle no one wants to invite but does because he's family. I want to run around and visit with everyone, instead of sitting and having them all come to me. I want to dance like there is no tomorrow and stuff my face with cake without worrying about how I'll be able to walk the next day.

I just want, for the most special and important day in my life, to be normal. Just that one day is all I ask.

Day 25: Enjoy some knowledge #HAWMC

Today's post is short and sweet, about something I learned from another health activist. It comes from Laura - who else?

"Life with Still's can still be life."

It is so simple but I catch myself forgetting it often. We can get so wrapped up in our hurts and our trauma/depression/anxiety and all the other issues that come along with a syndrome like this that we forget we are living life right now and that there is no pause button while we get better.

No matter your health issues, you are still alive. As much as life can suck sometimes, it truly is beautiful and we should all embrace it.

Day 24: Wordless Wednesday #HAWMC

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

Come check out the board here.

Day 23: Home Lab Meters #HAWMC

Dear blood glucose test meter creators, I have a new project for you!

I hate when I have so long in between rheumy appts and I'm pretty sure I'm flaring but it takes so long to get appts sometimes. There are other times where I don't think it is bad enough to involve docs, but I'd love the ability to track my flares so when I do have appts I can say 'I had x flares' and it could help determine when meds need to be changed or altered.

In order to measure inflammation and other markers, we'd really need something akin to a blood sugar testing meter able to take blood and interpret the results. It would be perfect if the device could measure ESR (elevated sed rate), CRP (c-reactive protein), a CBC (complete blood count), albumin (plasma protein/liver function), creatinine (muscle metabolism/measure of kidney function), and ALT/SGPT (liver enzymes).

It would be great if the results could be sent to your doctor (or if your hospital participates in an online health management program then there). This could allow us to save money on labs (uh oh!) and to monitor our health more closely ourselves and really be a partner in our health management instead of simply just a patient.