Category: resources

Financial Resources for Chronically Fabulous College Attendees

Posted on by Grayson
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Are you a current high school student starting to look at college next year, but wondering how to financially pull it off while living with health crud? Do you know one?
Here’s a great collection of financial resources for chronically fabulous students looking at or attending college.

General

Of course, FastWeb is one of the largest sites talking about college funding. Visit their page around illness and disability scholarships.
The College Grants Database has a large selection of grants and scholarships for disabled students. They even have some for graduate school.
Iowa Compass: Center for Disabilities and Development has a comprehensive list of scholarships for both general disability/illness and specific conditions.
Of all places, Needy Meds has a large list of scholarships for various college and graduate levels.
Gabriel’s Foundation of Hope gives out several $500 scholarships each year.
The Patient Advocate Foundation has a scholarship for students who are patients or have patients in their family.

Specific

If you live with a mental illness, make sure to check out these 25 Great College Scholarships for Students Living with Mental Illness.
Have an inflammatory disease like Still’s Disease or Colitis? Check out the Abbvie Immunology Scholarship. They give away 45 scholarships each year of $15,000. (I wish I had this in college!)
You can snag a $500 scholarship from Lupus Inspiration Foundation for Excellence (L.I.F.E.) if you have lupus.
The Michael Yasick ADHD Scholarship is awarded each year to undergraduate students living with ADHD.
If you have ADHD or a learning disability, make sure to check out the scholarships available from the National Center for Learning Disabilities.
Do you have diabetes? Check out the Diabetes Scholars Foundation’s college scholarship.
If you currently have cancer or have survived it, you should definitely check out the scholarship from the Cancer Survivors’ Fund.
Cancer for College has a number of scholarships for cancer patients and survivors.
Regardless of if you’re a cancer patient/survivor or have lost a parent to cancer, the National Collegiate Cancer Foundation has a scholarship for you.
The National Children’s Cancer Society has an Ambassador Scholarship Program which gives 40 scholarships of $3500 each out.
The Michael A. Hunter Memorial Scholarship is offered to patients who live with leukemia/lymphoma or have a parent who does.
Legally blind? Make sure to visit the Lighthouse Guild to learn more about their $10,000 scholarships.
The Elaine Chapin Fund gives out scholarships to students affected by Multiple Sclerosis (MS), either personally or in their family.
The National MS Society has scholarships for first-time college students affected by MS, whether it affects the student themselves or a family member.
The PDSA (Platelet Disorder Support Association), which focuses on people with ITP, gives out $1500 scholarships in addition to free passes to their yearly conference.
You can find a list of scholarships for bleeding disorders at the National Hemophilia Foundation’s site.
Have a Primary Immune Deficiency Disease? Check out this scholarship from the Immune Deficiency Foundation.
Shire offers two scholarships – one for ADHD patients ($2000 and coaching) and another for rare disease patients ($5000).
Have alopecia? Check out the “This Is Me” scholarship.
The Aplastic Anemia and MDS International Foundation offers a couple of scholarships.

Location-based

If you live in Washington or Oregon, visit Incight to learn more about their scholarship.
Live in or around Washington DC? Project Ascend is a non-profit that provides community support and scholarships for students that are marginalized, disadvantaged, and disabled.
If you have lupus and live in Florida, check out the Michael Jon Barlin Scholarship.
Have T1D and live in Ohio? Check out the Thomas J. Seefred Trust Scholarship.
The Diabetes Hope Foundation provides scholarships for Canadian students.

Tips

Make sure to apply for as many scholarships as you’re able to.
Always check with your intended college(s) on what funding opportunities they may have as well as what requirements you must meet to receive and maintain funding.
Talk to your campus’ disability representatives as well on what accommodations they’ll be able to provide for you. Don’t forget that this might include housing, meal plans, moving courses to more accessible/centralized buildings, and more.
Check with your guidance counselor at school as well as on sites like FastWeb for scholarships in your community.
If you need to write an essay for an application, ask others to look at it and review/edit. (You can always reach out to me as well!)
Good luck!!

 

CBD Resources

Posted on by Grayson
thickly black outlined square photo of greenery with white text at middle "CBD Resources" and at bottom middle "not standing still's disease"
With how much many patients have been utilizing CBD (Cannabidiol) oil, I wanted to list some resources here for people to learn more about it.
Sites:
In addition to listing various ways you might find CBD, they’ve pulled together a large list of conditions and what CBD does for them. They’re also super nice.
This site has a great collection of information on all things CBD. From their beginner’s guide to videos to a clinical journal, they have a lot to offer as well.
Other popular sites about CBD (and marijuana itself) include Leafly Medical Jane, High Times, The Cannabist, and NORML.
Get CBD:
Canna Treehouse offers the lotions I mention below from The Fay Farm in addition to a variety drops, mints, lotions, and other items.
Liberty Lotion is one of the first affiliates I’ve had on this site. I’ve tried their tincture (see below for review) and their lotion, and love both. They have lip balm as well that I’m dying to try. If you use the code NSSD, you can save 10% off any order!
My Reviews:

Bonus: Me discussing using edibles (and pot) for the first time

Research:

Make sure to check on laws for your state if looking at CBD oil containing THC or marijuana.

Last updated Sept 2017.

 

Self-Care Sunday: resources

Posted on by Grayson

Whether you’re a caregiver or caregivee – or neither! – self-care is integral to living a quality life. I’d like to give you some very basic resources on self-care here.

 

Next week, we’ll talk a little bit more about exercises and ideas on self-care.

News Story Roundup & #cassandrachemo Twitter Chat Tonight!

Posted on by Grayson

If you’re not following the facebook page, you’re missing out on some great stories – and even better commentary!

 

There are also a couple of exciting things going on tonight! Obviously, the Oregon Ducks are going to win the National Championship.
There has been a story in the news recently about a 17 year old girl being forced to undergo chemotherapy by the state for her cancer. This girl is 8 months shy of 18, and her parents support her decision to go with alternative treatments. However, the court says Cassandra is not capable of making her own decisions due to having run away the first time she was forced to undergo treatments. You can read some of the back and forth on this over on my personal facebook page. There are also a few different links in the comments about this story.
Tonight, myself and Kelly Crab of Purple Project will be doing a Google Hangout at 5:30 Central time (6:30 ET or 3:30 PT) to discuss Cassandra’s case. If you want to join in, you can also find us on Twitter. Kelly is at @girlsgotguts and I am at @kirstie_schultz. Please use the hashtag #cassandrachemo (it’s long, but also not in use!).

July is Juvenile Arthritis Awareness Month!

Posted on by Grayson

I have had a few people ask me about what people and organizations to follow in order to help share their awareness posts so without further ado please check out these wonderful people!

Thanks to everyone who pointed me towards these resources, and all of you who continue to fight for kids with types of autoimmune arthritis. If you have any to add, please do so in the comments!

Day 9: Caregiving #HAWMC

Posted on by Grayson

Today’s post centers on tips and advice to the caregivers out there. Over the past few years, I have posted several things focusing on caregivers that I felt needed reposting. Take a look!

  • A review of Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness by William Collinge, PhD.
  • An interview with Carla Jones, author of Death by Rheumatoid Arthritis
  • A review of After the Diagnosis: Transcending Chronic Illness by Dr Julian Seifter & his wife Betsy
  • A study showing that partners of those with RA and like diseases suffer as much emotionally as the patient themselves
  • A post from last year’s HAWMC focusing on my support system
  • Two posts on sex and chronic illnesses:
  • An interview with my fiance about the difficulties of being in a sometimes caregiver role, and tips/advice for others doing the same
I hope that this lovely collection of links can help to add to the knowledge that you, as a caregiver, are not alone – and that relationships can survive and even thrive through these chronic illnesses. It took living my own life to realize that, as bad of a third wheel as Arthur can be, he can’t ever severe the relationship I have with my fiance. I refuse to be another one in a long line of statistics proving that love loses in the chronic illness game. But that takes understanding the difficulties that come along with A) dating me and B) dating Arthur – realizing that it is just as hard for my fiance to live with Arthur as it is for me, and maybe even emotionally more difficult because he knows there is nothing he can do to fix this for me.
Just as a final remark to all my fellow spoonies – please remember that you’re not angry with your significant other, but with your illness. It makes a huge difference when you stop taking out your anger on the people who are there to support you.

Day 4: Sharing Resources #HAWMC

Posted on by Grayson

One of the best resources ever for me was my dear late friend Laura at Still’s Life. Many of the pages and sites she shared got me through a lot of pain, worry, and frustration. Using her as a guide, here are some really great pages, sites, and blogs to help you cope and learn more about Still’s Disease.

There are many other resources out there to explore, but these are great places to start no matter if you, your child, or someone else dear in your life is dealing with Still’s Disease.

Where does the time go??

Posted on by Grayson

Apparently when you’re planning a wedding with active fibro, you don’t blog a lot.

Oops.

For those of you wanting more of a fix, be careful what you wish for! The Health Activist Writers Month Challenge (HAWMC), from Wego Health, is coming back beginning April 1st and you’ll get posts daily. Now that we’ve got the dress, venue, and cakes settled for our wedding in a year and a half, it’ll be a littler easier to post here anyway.

If you want more interaction with others dealing with this and like diseases, or you just want to see me post more things, I invite you to head on over to the facebook fan page for this blog. I post pictures and articles that I might not have a lot to say about a few times a week, and you’re certainly invited to email or FB message me questions to ask others using that page.

Here are some interesting articles you miss by not liking that page:

And that doesn’t even count the fun pictures of me and witty sayings you get!
If you feel the need to listen to me rant more often, I do have a twitter page too.
I hope this didn’t come off as an ad. I just get stuck on words blogging sometimes, especially with a lot going on, and tend to focus more on the social media aspect of health activism. I hope you’ll join me!

Day 26: I’m a #rheum pimp #NHBPM

Posted on by Grayson

But only for my friends! Today, I wanted to take time to share with you my favorite blogs, facebook pages, and twitter-ers regarding juvenile arthritis, Still’s, and the #rheum or chronically ill community in general.

Laura is an amazing resource for information regarding Still’s and she has done a lot to help me on my journey. She recently got engaged as well and we are both at very similar points in our lives. It is really great to have someone so supportive and understanding as she is. You can follow her blog here, Twitter here, and facebook here.

Mia is the cutest toddler I know and she has been dealing with Still’s for too long. Good news is that she just came off of steroids too!

Parker has been dealing with his Still’s for coming up on three years now. It has been really neat to watch him grow up though obviously I wish it was under better circumstances.

Natalie hasn’t blogged in quite a while but she’s pretty active on Twitter. She is an OT living with Still’s, anemia, and fatigue – which is nice to see! I feel like if I lived in the UK, she would be the OT I’d want because she would now how these things affect our bodies.

Trish over at PhyzzEzee was diagnosed with Still’s in 1949 and still continues fighting it today. She is a great resource for information and you can follow her on Twitter here.

Sally over at King Arthur & the Creaky Knits of the Round Table has Still’s and plays the ukulele too! She also knits if you couldn’t tell. You can follow her on Twitter here.

Emily over at Chronic Curve is a college student on Remicade for her Still’s. You can follow her on Twitter here.

My friend Joanne made an awareness video a few months ago and is now blogging! She’s about the same age as me and I think it’s incredibly important that young adult chronicle their battle with rheumatic diseases. There just isn’t enough information out there on young adults with RA. You can follow her on Twitter here.

Speaking of, Joesph is in a similar situation. His RA battle has included being diagnosed with Raynaud’s as well. He’s from across the pond so it has also been interesting watching him handle the NHS. You can follow him on Twitter here.

A to the A over at Wanton or Wonton is engaged like me and trying to navigate the addition of lupus to her numerous health issues including RA.

My friend over at Secret Raindrops is amazing. She has recently gone through a divorce and is working on the boundaries of still living in the same household (Hurricane Sandy put a squash on her moving plans) and dealing with her ex’s family – all of whom doubt how serious her RA is. She is one of the strongest people I know. You can follow her on Twitter here.

My friend Stacey is likewise amazing. Not only does she deal with multiple illnesses including RA and fibro, her sweet daughter Jordan has shown symptoms of JRA since age 2. They are some of the first friends I made when I did finally reach out into the RA/JRA community and they have become dear friends. They live near where the JA conference will be held this next summer and I’m hoping we can all make a trip out to Disneyland. You can follow Stacey on Twitter here and Jordan’s Pink Angels here.

Emily over at Mama Sick chronicles how difficult it is to be chronically ill when you have no insurance and no money 🙁  You can follow her on Twitter here.

Britt over at The Hurt Blogger recently got a gig writing for Creaky Joints! How cool! In the last year, she has done a lot to further understanding of patients with rheumatic diseases including speaking at the Med-X conference. You can follow her on Twitter here and facebook here.

Here is a list of great people to follow on Twitter:

  • Sarah is on Humira and plays college softball. She’s pretty cool.
  • Kary lives in the UK with RA…
  • So does Katrina…
  • And Barb who also blogs at Walking in My Shadow
  • Heather is the first Twitter friend I met in real life and she’s like a sister to me. And she knows just about everything about getting a 504 plan for kids set up!
  • Dawn is a gluten free, paleo chick with spondylitis who loves baseball and the Detroit Tigers. We totally have a lot in common.
  • Sporks is a RA fighter who loves NPR, video games, and cooking. She also shares the most hilarious things I’ve ever seen.
Here is a list of awesome people and groups on facebook:
If you made it to the end of this post, you deserve a damn treat! There are just so many resources out there available to us and so many dealing with illnesses that, even if they’re not exactly what we face, know how we feel – the loneliness, helplessness, and prednisone munchies. I could have included so many more people here than I even did but had to restrain myself so if you’re disappointed you aren’t on here don’t be sad!

July is Juvenile Arthritis Awareness Month!

Posted on by Grayson

Ahh, I have had a lot of craziness going on you guys! I’m so busy this summer. It’s great, but it also means my fatigue monster is super strong so I’ve been letting things slip over here. I’m sorry 🙁

But hey! July, huh? Did you know it’s juvenile arthritis awareness month? Well, you do now!

At 24 years of age, I know I’m not a juvenile anymore… at least physically 😉 That still doesn’t change the fact that I have a form of juvenile arthritis. So understandably, this is something that I really support. The word arthritis entered my life before I even had a chance to learn names of bones or even my colors in Japanese. It is very tough to grow up with one of these illnesses and not know how to explain how it feels to others. I still find myself running into this problem, often making up ridiculous (though accurate) descriptions like how it feels sometimes that my bones are filled with gel they use to make ice packs instead and it can’t decide if it wants to be a hot pack or an ice pack. I know how it is to get teased through school, to be bullied because you are different and physically otherwise capable. And I know what it’s like to transition into the grown up world – finding your own healthcare, navigating employment options and collegiate activities. It sucks. But you know what? The other kids that I know that grow up with these diseases too… well, they’re the toughest bunch of kids I know.

The rest of this month, I have some great things to share with you guys. All that time on hiatus hasn’t been exactly spent not thinking of you 🙂  Coming up, I want to focus on children dealing with juvenile arthritis – posts on dealing with schooling, with bullies, etc. But I mostly want to focus on the awkward transitiony stages – transitioning from child care to adult care, navigating insurance on your own, explaining your illness to jobs and professors, etc. I’ll also be posting tips on how to do every day things easier, like dry shampooing instead of hopping in the shower on high disease activity days. And I’m even working on a video! Or maybe a few. Whoa!

For now, I’d like to share some great books and further sources of information on arthritis in case you are interested. These might not just be juvenile centered, but I have found them to be helpful for me.

  • A Primer on Rheumatic Diseases by the Arthritis Foundation – This book covers essentially every disease in the rheumatology field as you might expect. It has some great information on Still’s diseases as well as other forms of arthritis that I didn’t even know but that made so much sense. Very very helpful, but keep a dictionary handy. Plus, um, did you see you can buy it for like a cent used? Seriously, get it.
  • A book on anatomy – Just find a generic classroom copy, preferably one that focuses on the whole body and not just the skeleton. Did you know that your tonsils are a part of your lymph system? I didn’t until I did my anatomy research and now I know why I get sore throats!
  • Out of Joint – This book is about the journey of a young mother who falls ill with rheumatoid arthritis. Her story is not only comforting for its honesty and truth but also inspiring for her strength and character.
  • Partners in Healing – This book can be very helpful for those who need care as much as care givers. It offers care givers a unique peek into our minds though, and helps them to understand what they can and cannot do in order to help us on our journey with chronic illness.
  • This website has a few documents on making the transition from a child to an adult when it comes to healthcare.
I’m going to try to keep things more generic this month instead of focusing so much on Still’s just in light of JA awareness but I will probably have a post specific on Still’s research I’ve done and a comparison between AOSD and SOJRA.