I recently had a friend who passed away after a long battle with stage IV breast cancer. She was an amazing woman and a true fighter, and though she was very much not ready to go (nor were any of us ready to lose her), sometimes cancer just doesn’t care about our own desires.
My primary way of dealing with grief has always been to just keep as busy as…
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The name is Felicia, but I generally go by Sammy. I’m 31 and I have Ehlers Danlos Syndrome, the Hypermobile type. I’m also disabled beyond that, with Post Traumatic Stress Disorder from a violent assault/break-in in 2015, ASD, and Bipolar Disorder. I have worked since I was 19, quite hard honestly, but never have I managed to be able to hold down a full time position due to the level of pain I was in on a daily basis and my inability to sensory process things on a level that wasn’t overwhelming (and depression/mania cycles and anxiety also played a role, too, honestly.)
Eventually, I got my mental health under control. Mostly. Things were going good until a break in sometime in mid-August 2015 and nearly being strangled to death by a complete stranger traumatized me to the point of near agoraphobia and constant flashbacks. I have been working with several medical providers to get better and have made strides, but it’s only so far. Pain makes it, as you imagine, more difficult. And when you’re constantly getting sick and dislocating things, getting to appointments is further complicated.
I had to drop out of college a few years ago due to this pain and haven’t been able to afford to go back. In the meantime I work as a mentor to at risk and homeless K-4 youths. I love my job and I love my kids, and I’d never change it, but it’s hard to put my game face on a lot of days. And I can’t do any amount of lifting, and need to be in a chair for intensive days.
I also, as of six months ago, take care of a 60 year old mother who has serious health ailments and has not been able to work. It is a full time occupation in and of itself, and two months ago a care facility utterly neglected her care to the point that septic shock set in and she nearly died. With an 80% chance of not surviving, a miracle happened, but things are tough. Especially when none of us are working, now, and rent and bills are due. She gets LTD but it’s only 66% of what she earned before.
As for me, after ten years of being told I was a hypochondriac or that I have Multiple Sclerosis or other disorders that made no real coherent sense, I saw an amazing pain specialist this year who diagnosed me with Ehlers Danlos Syndrome and it has changed my life. I’m finally getting supports I need in order to flourish and not struggle. The downside is that on state insurance, only a certain number of medical supports can be approved per year. I was furthermore denied a CADI waiver because I ‘dress well’ and am ‘intelligent.’ I don’t feel that if a corpse during an open casket is capable of fulfilling one of these, that it should be used to be denied people services they need, especially if they require complex care. Because they certainly can’t work a full time job, and neither can I, intelligent or not. Yet here we are, and here I am, out of a service that helps pay for bracing for complex and rare conditions like mine.
Which brings me to my point: Custom pieces are expensive. Thumb splints are $200+, easily through SIRIS. I had to order five today (one is a non-SIRIS brace for wrist dislocations), with only four covered, so I’m already $160 in the hole, as a disabled person not working for the rest of the summer. And I need to order more splints. Two for thumbs, and to cover one of my fingers that won’t be paid for by insurance. What about my other two fingers?
As someone who makes like $100-$300/month while waiting for SSI, this is *very* expensive. And I hate begging, I truly do, but anything helps. Especially because these fundamentally change my life by reducing my pain significantly.
I made a plumfund to help with the extraordinarily horrific costs of affording all my braces and care this summer. So uh, if you could chip in even a couple books or share this it would be incredibly fucking appreciated. Like please. I am begging. You can’t see me, but trust me, I am on my knees right now.
Hey everyone, here’s an updated on the fifth of June. I appreciate every and any reblog this gets but please, if you can afford even $5, I would love you! I’ve only raised $20 out of my $700 goal so far and I’m getting a bit nervous. I still have to order the other braces and don’t know where the money is coming from! I furthermore dislocated my right wrist and my right ring DIP joint today and was not having a good time in physical therapy as a result.
This is my birthday month and literally getting this partially to fully financed would be an amazing gift that would change my quality of life drastically. Thanks much! ❤
Since joining up with the Chronic Illness Bloggers Network ran by Julie Ryan of Counting My Spoons, I can’t tell others experiencing illness enough about the benefits of being a chronic illness blogger. In less than a year, my membership connected me with a number of brands offering premium products to help manage the woes of my Chronic Illness Life with Ehlers-Danlos Syndrome. Not only that but my website stats steadily increase each month ticking by since joining. I connect with a number of Chronic Illness Bloggers via the network and enjoy working with Julie on campaigns as she is always ready and willing to help as needed. it is an absolutely phenomenal experience!
Chronic Illness Blogger SUPER MASSIVE Holiday Giveaway | OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome | [Image Description: Photo of a rectangular present wrapped in red paper with accents of golden and green leaves. There is a yellow bow on the top of the box. The background is white. The article and blog title overlay the article. Noted are four stars with text written over: 1. Runs 11.21.2016 to 12.03.2016 – 2. Free to Enter – 3. 11 Different Prize Packages – 4. Packages valued at $400-$600 USD. Underneath the present in black text reads: Details & Entry Inside.] Click the picture above to enter the Giveaway via Rafflecopter!!!
Improving the quality of that chronic illness life is always the goal and these products shine when it comes to bettering the day-to-day! With sponsors and prizes included in these packs donated by Chronic Illness Blogger Members, this giveaway a precedent benefit to the community I am overjoyed to share with my readers!
Entry is simple and free! Like all things in life should be!
This event is only available everyone; however, packages ten and eleven are only available to US-based participants. Winners are chosen at random via Rafflecopter.
Click through the gallery below to view available packages and feel free to share these photos across the online chronic illness community to get the word out on this colossal giveaway offering extreme value to winners!
The giveaway starts November 21st, 2016 and runs until December 3rd, 2016 so enter to WIN today!
If you’ve been following me for the last few months or more, you know that back in December 2015, I dedicated 31 days to illustrate “The Hávamál.”A lot of folks have been asking me to collect all the drawings into a book, so I did!
Signal boosting a fellow artist’s really cool book project!
Some of you know Larissa, some of you don’t. For those of you who don’t, what you need to know is that this world needs her. This is her story and why she needs your help.
Larissa is a young, charismatic, adoring, extraordinary, and very younique single mother of Violet. She is no stranger to hardship, pain and disease. In fact, Larissa has had and beat cancer twice. She is and has always been a fighter. Just as Larissa cusped adulthood, she would begin her career as a fighter. Not the kind who wins belts, sees her name in the paper or faces an adversary of equal weight and size; but a fighter who learned quickly, the value of life and each inherent breath. At age 19, Larissa began her 2 year battle with Hodgkin’s Lymphoma. With unfettered tenacity and courage, she brawled and beat it. But this wouldn’t be her final or easiest fight 15 years later, as a new mother, Larissa would find a lump in her breast. With the support of her family (former husband, stepkids, and Violet) she would endure several rounds of chemotherapy and radiation, but the battle would wage on and on. After many rounds of chemotherapy and radiation, Larissa bravely opted for a double masectomy, more radiation, underwent almost a dozen reconstructive surgeries, and watched as the foundation of her family began to crumble around her. In the next years, she recovered as her marriage fell apart, she healed from her radiation burns, multiple surgeries and chemo treatments. Attempting to embrace life alone with her sweet Violet, she actively worked toward strengthening her ravaged body by taking up Krav Maga, finding financial footing, and establishing mental peace in her new life. Five or six months ago, Larissa started becoming concerned that she was feeling overly tired again. She began experiencing unexplained pain in her body. She seemed to not be able to keep up at her Krav Maga classes like she used to. Blood tests revealed little, however, a trip to the ER this past Thursday 11-19-15, revealed that Larissa isn’t just fighting breast cancer again. Her oncologist is 95% sure that this is Terminal Mestatic Breast Cancer. When the medical community says that cancer is TERMINAL, it means they do not have effective, approved medical answers to fight or cure a disease, but it does not mean that there are no other means by which to fight. Larissa is not ready to give up. She is not willing to die and leave Violet alone. Neither insurance, nor her meager income will allow for her to afford a nonconventional medical fight for her life. We, her friends and family, are asking for your help to give her a chance to beat this, to fight for life, for time with Violet. We are asking for support so that Larissa can receive nonconventional medical treatment and not have to stress about making ends meet while she battles to survive. Most of all, we are asking for peace of mind and a quality of life for her during this time. Thank you for your help, love, support and many prayers.
Update: Larissa is currently in the hospital with fluid on her lungs. The need for help is emergent
Actually friendly reminder that the author of Chameleon Moon (me) is a disabled, chronically ill, neurodivergent, queer trans person with selling books as their sole source of income, and any bit of support you could give, even reblogging this post, would be incredibly appreciated. ❤
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #1
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #2
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #3
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #4
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Holding the Bowl 