A Little Tea POTSie

Hi there! My name is Blythe, and I'm a eighteen-year-old with Dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome. I also have chronic headaches, Benign Hypermobility Syndrome, insomnia, anxiety, and dysthymia. This is my health-only blog; my main is aceprouvaire. I also have a fashion blog called amiafairyprincessyet, which is by definition a disabled fashion blog.

kaninchenzero:

stimmyabby:

Can we talk about *you need to learn to advocate for yourself* being used to blame disabled people in inaccessible environments?

like when advocating for yourself as a patient often results in worse care from medical professionals annoyed that you want treatment on your terms

(via livewithintentionandgrace)

tw: disgusting

agirlcalledcaptain:

heartfilledminds:

theiredepartment:

So, for all your other EDS type III/hypermobility folks out there:
anybody else manage to “floss out” actual chunks of gum tissue when you floss too vigorously?

eta: nope, not gingivitis or other dental issues. just wondering if this is an EDS thing and the medical literature is not always terribly specific

Yep

I’m not type 3 but YES.

OH GOD NO BUT NOW I’M TERRIFIED

Get Heather the Lyme Treatment She Needs by Heather Neuner - GoFundMe

blue-ten:

thecatsfootiepajamas:

llamadeus:

thecatsfootiepajamas:

It’s been six months and I’m not even halfway to my fundraising goal. I’m incredibly grateful for the donations I’ve received so far and it might get me through a few weeks but I need closer to $10K for my entire treatment plan. Please help me get the IV drugs, testing, and medication I need! If left untreated, Babesia is crippling and often fatal!

i reblogged this a couple of days ago and for some reason literally all my followers ignored it.

i know everyone hates being guilt tripped into reblogging something, but this isn’t some vague goalless campaign to raise awareness, it’s about a real person who needs treatment for a life-threatening illness.

so many people on my dash like to go on and on about how useless 99% of the disability/chronic illness “activism” on this site is (and i agree), but here’s something concrete and legitimately helpful you could do! i would likely be dead by now if i hadn’t been lucky enough to get my own condition diagnosed and treated in time. that’s how serious this kind of stuff is.

could you all please at least signal boost this?

God bless you all! I’ve posted this dozens of times and have been lucky to get a few persistent reblogs from the same three people but this has seriously restored my faith in humanity (or at least Tumblr). Tick and mosquito-borne illness is no joke but the gov’t seems to think it is so not a penny of my treatment is covered by my insurance. After five years I finally have the attention of Social Security Disability. I have an assessment next month but my hopes aren’t high and I still have bills to pay. Like she said^^ Every penny and reblog goes to help a real disabled person that could die without treatment. The kindness of friends and family over the past few years has been nothing short of a miracle but my inner circle can only give so much. Lyme alone is a nasty illness that can, and has already, infect the brain causing everything from mild light sensitivity and migraines to full blown tremors, gastroparesis (paralysis of the digestive tract), muscle weakness, chronic fatigue and even memory loss and seizures(I’m at the point where I can’t even stand in the shower for fear of seizing) Babesia on the other hand is almost identical to Malaria and literally destroys my red blood cells causing dangerous anemia that no amount of supplemental iron can fix. Please help me reach my goal so I can get the treatment I need! It’s been six months, I don’t think i’ll last six more!

I was asked to reblog this and when I read through the story I could not ignore it. I’m shocked that it only has 74 notes. Let’s change that! Please help spread this around! 

(via lammergeist)

destieldamnit:

OKAY FOLKS HERE’S THE SITCH

The Wife and I have been trying to become moms for over six years. Horrible, depressing, frustrating struggle. Why? I have PCOS and a blocked right Fallopian tube (that x ray up there is yours truly during a very painful second HSG). We were lied to for four of those years by a doctor who chose to not diagnose me with PCOS despite obvious signs and offered only one solution out of over a dozen I later learned of. The only reason we can think of for his neglect was homophobia since we are a same-sex couple. 

THE GOOD NEWS

I am now being assisted by a wonderful fertility clinic. They are going to unblock my fallopian tube finally and have a plan to do an intrauterine insemination (IUI) with the help of fertility medication. This is our last option and we are so willing and eager to try an IUI.

THE BAD NEWS

Our insurance will not cover a single cent related to the procedure. The longer I am forced to wait the weakened fertility shrinks. This is still a viable option for me, but I do not know when that window will close forever.

OKAY, AND?

I’m asking for your help. I would deeply appreciate if you, dear Tumblrer, would consider helping my wife and I make a tiny, nerdy mini fan of our dreams through a donation. There are even perks available, which I plan to add more to as well!!! Regardless, a dollar or even a reblog would mean a great deal to me.  

ENDS CHRISTMAS, DECEMBER 25TH - 90 DAYS!!!

DONATE HERE 

YOU’RE THE BEE’S KNEES, CUTIE! THANK YOU FOR BEING YOU!

(via little-smartass)

Hi Everyone :)

justapunkrockloser:

My Mum suffers from Postural orthostatic tachycardia syndrome (POTS), also known as Dysautonomia which means she can’t work, so it’s just my Dad working.

What is PoTS? i hear you ask.

Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition.  Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down).  Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing. 

there is no cure, just ways to manage the symptoms.

I’m posting this because i wanted to help raise awareness for PoTS and to get some more cash flow into our household. we recently purchased an electronic wheelchair for her so she doesn’t have to walk around (walking majorly affects her) and we have money to pay off, so if you can, please donate to us by clicking the above link!! if each one of you donate $10 we could reach $18190 which would be AWESOME. 

thankyou for reading this and i hope you can donate, and if not, reblog this to get the word out! thankyou!

-Petaa

You’re broke, don’t have coverage for a wheelchair and need one?

fogwithwheels:

That’s an unfortunate place to be.  Unfortunately, that’s a place that far too many disabled people find themselves in.  

So, this is Aeryn’s unofficial post on helping you to find the best wheelchair given the circumstances.  

Now, before we begin, please note the following things

  1. I am not a medical professional of any sort.  This is not medical advice, this is not actual official advice on how to measure or any of that.  I have done all of this myself, as a wheelchair user, and I want to help other wheelchair users avoid mistakes I have made and take advantage of things I have learned.  That is all.  
  2. This is not going to get you a 100% perfect chair.  If you’re really, really, lucky, it might.  But as much as I love my chair, and I do, there are small things I have problems with.  Wheelchairs are fucking expensive and this is the how to be cheap but also helpful post.  You’re going to need a lot more money for the perfect chair, depending on the situation
  3. this is still going to require a fair bit of money.  My chairs have cost me around $800 each with shipping, so yes, this is a huge amount of money if you’re poor.  HOWEVER, If you are able to do this, there are benefits that I will talk about.  I do understand that not everyone can afford this though.  

Okay, 

now let’s talk about Wheelchairs!!!!

(under cut because length)

Read More

(via wheeliewifee)

generic-art:

5-Year-Old With Autism Paints Stunning Masterpieces 

Autism is a poorly-understood neurological disorder that can impair an individual’s ability to engage in various social interactions. But little 5-year-old Iris Grace in the UK is an excellent example of the unexpected gifts that autism can also grant – her exceptional focus and attention to detail have helped her create incredibly beautiful paintings that many of her fans (and buyers) have likened to Monet’s works.

Little Iris is slowly learning to speak, whereas most children have already begun to speak at least a few words by age 2. Along with speech therapy, her parents gradually introduced her to painting, which is when they discovered her amazing talent.

“We have been encouraging Iris to paint to help with speech therapy, joint attention and turn taking,” her mother, Arabella Carter-Johnson, explains on her website. “Then we realised that she is actually really talented and has an incredible concentration span of around 2 hours each time she paints. Her autism has created a style of painting which I have never seen in a child of her age, she has an understanding of colours and how they interact with each other.”

Much better version of the same subject matter I posted earlier.

(via magicalsweaters)

it’s been over three years and I still fail to grasp the concept that it’s better to do my homework when I’m high-spoons

Autism and Race Anthology

nailthatsticksup:

chavisory:

Okay, literally everything and everyone in my life needs attention or money. 

But the first-ever anthology of writing by autistic people of color needs money within the next two days to meet its fundraising goal.  Please give if you are able!  And, like, want to read this sure-to-be-amazing book, which I do.

Now there’s a day left (it closes at 11:59 tonight).