Welcome to My Brain

These are my thoughts on a variety of subjects. So welcome to my brain!

Saturday, February 25, 2017

Open Letter to Republicans

Dear Republicans,
My name is Susan Spann. I am 38 years old now. My life started as a pre-existing condition. If not for my mom’s service in the military, I would have likely been uninsured most of my life. But when I aged out of ChampVA coverage under her in college, it was the craziest scariest expensive time of my life so far not counting the years 2003-2014. 
In 2003, Blue Cross Blue Shield opened what they called a special open enrollment plan open to anyone not employed and insured through an employer. By the time that plan ended in 2014, the premiums for just me were $298 per month with an out of pocket that was around $10,000 per year. There was never any way that I, as an individual, would have ever been able to meet such an outrageous out of pocket unless ALL of my expenses were calculated. 
The problem with that plan? It was never insurance. It did not cover preventive care services. It was essentially only a catastrophic plan. And while it covered some surgeries I ended up needing, it was never enough. Because preventive care was not covered, I had to use the ER a lot. And I couldn’t afford that. Which meant I had to apply for charity care a lot. Which drove up the costs for the insured. 
I voted for John McCain in 2008. Why? Because he proposed doing the ACA. I was disappointed when Mr. Obama won that election, but ecstatic when he picked up the ACA. With its passage, the first effects were felt: no more worrying about hitting a lifetime cap. I should have never worried about that, but at the age of 32 when it passed in 2010, face it, by that point, I had a growing list of what are now considered PECs. With its passage, I no longer had to worry that if I got sick again the next day (immune deficiencies do that) that I would be dropped in the middle of treatment or care. And with its passage, I looked forward to the next big step: I was going to get proper insurance for once because I would not be denied like I would have been had I applied for the individual plan BCBS rolled out in 2008. I was tired of being that underinsured person who needed charity care to pick up the majority of my tab or faced bankruptcy just for needing care. Thankfully, this year, my credit history should be wiped clean of that lingering medical debt that could never be collected because of consumer protections that prohibited debt collection agencies from doing some crazy illegal stuff. 
Fast forward to today. We have since had the following issues arise:
  1. CVID is my new diagnosis. And after a recent hospitalization for IV antibiotics due to numerous drug allergies because I had a triple infection, my doctor has now built the case for me to receive IVIG. This is answered prayer because with this treatment on the horizon, I might get well enough to return to the workforce part time.
  2. Mast cell disease: suspect probable smoldering systemic mastocytosis. Treatment at present with cromolyn oral ($1000+ per month without insurance and I only have $735 in resources and my mom only has just enough for the house payment and utilities, barely enough for medicine for me from her veteran’s benefits). 
  3. Autism diagnosis finally.
  4. Congenital rubella syndrome.
  5. Agent orange baby - first generation. Who knows what that entails exactly. This goes to the VA.
  6. Ulcerative colitis and diverticulosis with diverticulitis flares and colon perforation (the chief reason for the recent hospitalization.
  7. Hypothyroidism, feminine issues that may require surgery, mitral valve prolapse syndrome, ADHD, colon polyps, etc. 
At my age, I should not have to worry about losing access to healthcare I need that can restore some quality of life for me, that can restore the hope that I will get to return to the workforce again even if it is just part time. 
Having real insurance for the first time in my life has meant less out of pocket expenditures which has allowed us to do something I would have never been able to do before and that is look into moving again as an adult to a state where the air quality is such that my whole entire immune system resets and my allergies are less aggravated. Having real insurance for the first time in my life has meant that we can pursue proper diagnosis with an out of state specialist. And it has meant only having charity care assigned at ONE facility for expenses not covered by both BCBS and Medicaid. But we have been able to utilize more primary care and clinics than hospitals. Since having proper insurance afforded to me on the individual market outside of the exchange through BCBS, I have only ever needed two hospital level visits outside of a colonoscopy/endoscopy and that has been for an out patient surgery and the most recent triple infection treatment. 
Republicans, to the extent that I have received any respectful communication from any of you on other matters, you seem like you could be reasonable people. So prove to me that you are in fact reasonable and work with us here. We need assurance that we will not lose insurance coverage during the time of which our country utilizes insurance to have proper access to healthcare. The most obvious solution to our problems in this country is not a repeal of the ACA. It is universal care. And I think our country could afford a hybrid version of that where we all pay maybe $50 into the pool and all get care we need. Some will need more while others will need less, but no one should have to worry about losing access to care or going bankrupt for needing care. You claim to be pro-life. So why would you take away access to care for anyone needing it? I want our country to have more negotiation power to bring down the costs of medicines (Auvi-Q and epipen have literally committed the price gouge and the Auvi-Q gouge is of epic proportions from $300 to $4500 charged to insurance companies!). I want our country to have more negotiation power to bring down the costs of healthcare itself. And I want our citizens to have more power between them and their doctors to decide what’s best for their care. If we had universal care, I would not have needed to wait until a hospital visit occurred to get IVIG treatment. My doctors would have been able to try it out with me sooner to see if it would work so that we would have a definitive game plan now and I would be back in the workforce already. But insurance said no. Because I am too borderline and it’s a subclass deficiency with frequent infections. 
Did you know that off the exchange, we have a minimum of 180 million people who benefit from protections provided by the ACA? Counting those on the exchanges, we have 200 million people (all of Clinton’s voters and all of Trump’s voters plus even those who did not vote at all) who benefit from the ACA. Many don’t realize it because they have never bothered to look at the benefits they do have. They just parrot what they have heard from fake news. But that is a substantial number of people that would be hurt if you repeal the ACA right now and don’t replace it with something equally as good or better. 
What provisions do we get?
  1. Lab tests
  2. Diagnostic imaging services
  3. Colonoscopies
  4. Women’s care and men’s care equally
  5. Birth control is covered (it doesn’t need to be free, it just needs to be covered)
  6. Preventive care services including vaccinations 
And I even have dental insurance now as well (I was told I did not qualify before the ACA). 
So please slow your rollers on the ACA ideology your party has adopted and take a good long look at my picture. I was on track to become a college professor before my health sidelined me. Now I have aspirations to become the first known autistic president of the country, but will settle for working for Disney or for a library if they will accept me while working on a book on the side. 
Sincerely yours,

Susan Spann

Sunday, June 5, 2016

A Very Open Letter to the Disqus Bully "AutismDadd"


You must think you are something special by trolling a two month old post and its comments and bullying an autistic. But get this, you are not special and you are a troll and a bully.

You attacked me by saying that I cannot be autistic and that the diagnosis that I do have is "rubbish."

Well, no. YOU are the rubbish. Not my diagnosis.

Here is the official report:

Gilliam Autism Rating Scale (GARS-2)
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Raw Score
Standard Score
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Stereotyped Behaviors
Social Interaction
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Autism Index: 94 (35 %ile) 
Probability of Autism: Very Likely

On the GARS-2, Susan was in the highest possible category for the probability of having Autism. This is consistent with the observed behaviors, and her difficulties with work and social interactions.

Diagnosis is therefore:

299.0 Autistic Disorder

I cannot make that up. So if you still wish to bully me, let it be hereby known that you will be brought down by the justice system. 

Also, readers, if you wish to report AutismDadd, feel free to go to his profile at the above link and do so. Any help would be appreciated. 

Never let anyone try to invalidate who you are and always be yourself. 

Sunday, May 29, 2016

My Story and An Open Letter to the Bully Calling Himself "AutismDadd"

First, my story so far, and this will not be all of my story because I am working on a book. I have had the opportunity to share more of my story and experiences in the past few weeks as another disabling medical condition that is life threatening in nature was discovered through some testing that is nowhere near over yet.

Whenever appropriate, I do share my story. So that hopefully others will learn from it. It happened over here: http://www.pbs.org/pov/blog/docsoup/2016/04/andrew-wakefield-vaxxed-documentary-autism/. While I will give props to the author of the blog post for having the bravado to attend a controversy bogus film and then write a review about it, I wish that the film would quit being shown. It is dangerous at best and further perpetrates the myth that autism is damaged at worst.

My own story is that I was born with congenital rubella syndrome. My mom was exposed in early term when she was pregnant with me. Early enough that I somehow survived despite the fact that she had a very complicated pregnancy in the months that followed the exposure. As for the woman who exposed her? She lost her baby shortly after birth.

Congenital rubella syndrome is often lifelong with clinical manifestations that can occur later in life. I am just fortunate to have lived despite the exposure.

Mom always knew something was different about me. Always. Long before the first vaccine was given. Mom, like me, was diagnosed autistic late in life. She was diagnosed after me. Her autism is level one - mild. My autism is level two-three moderate-severe.

But what is autism you may say? Because you're so smart and you can communicate. Yes, I am smart, and yes, I can communicate. But that's not autism. Although I did have clinically significant speech delays and do have trouble with functional communication. Autism varies from person to person, hence the reason it is a spectrum disorder. It impacts social skills, imaginative play, and can be comorbid with sensory processing disorder which can lead to a lot of meltdowns.

Here's the response to AutismDadd who had the audacity to try to invalidate my diagnosis today (two months after I shared my story with the writer of that post linked above):

AutismDadd, first you cannot spell. So what right do you have to try to invalidate anyone? You're not a psychologist. Only psychologists are allowed to diagnose. Only medical doctors are allowed to diagnose. As long as stupid people like you exist, autistics will never have acceptance in society. Acceptance. Acceptance means that autistics like me are accepted as the people we are and allowed to attend church and school and be gainfully employed as long as they are physically able. They are not judged for being different or told to stop their fidgets or to be something they simply cannot be. AutismDadd, I am clearly a threat to you somehow because I clearly don't fit in your little preconceived box of what autism should be. And that's good because it means all the hard work my mom put into me getting therapy paid off. It means that those who invested in me had a return on their investment because I don't fit your ideas. And that's wonderful. I am clearly also more intelligent than you will ever be. Because I don't insist on trying to bully and invalidate people or their diagnoses. And I definitely have a lot more compassion than you ever will. But maybe that's because I am sick and tired of idiots like you who think they have the right to try to invalidate people. Am I sensitive? Yes, but it's because of idiots like you who falsely judge people and try to invalidate them that I am now an advocate for those same people and a self-advocate. I may not get paid for my work in advocacy, but I love what I do. Because hopefully, one day, there will no longer be idiots like you trying to invalidate people or their diagnoses. Oh, and you have been flagged and reported to Disqus using their form, something I wish Facebook had when reporting. I looked further into your comments. You're always an idiot and a jerk from what I could tell. And guess what? After this, I am done with you. Period. So say what you want, but you get no sympathy from me because I don't have time for that crap.

Anyway, like I said, I am not sharing too much of my story beyond this on here because I am trying to work on a book. And here's something I do know. If AutismDadd tries to come at me on my blog, I can ban him.

If nothing else, I hope more people learn from my experience and learn how to better advocate for autistics and autism acceptance.

Sunday, July 19, 2015

Why I Refuse to Use "People First" Language

1. It is insulting. It makes it sound like our disabilities are diseases when they are not. I have asthma. Yes, it is a disease. Of the lungs. But I am asthmatic. I have autism. Although a processing disorder, it is not a disease. I am autistic. 

2. It is degrading. People first language feels degrading because the people who insist that we use it are belittling us for using identity-first language.

3. It strips away my identity. Again, it makes our disabikities sound like a disease. It doesn't recognize that many of us have accepted our disabilities as part of who we are. I have autism, but I AM autistic. I identify my autism as an ingrained part of what makes me WHO I am; therefore, I identify as autistic. The Deaf identifies themselves as a culture. When you insist on calling the deaf "people who are deaf," you steal their cultural identification. They are Deaf, deaf, or deaf people. I am hard of hearing or a hard of hearing person. 

4. It is clunky. Just as it says. People first language uses too many words. This is worse than our cultures. 

5. It is awkward. Refer back to number 4.

6. It is not being used by those who actually have disabilities. If you ask most of us who actually have these disabilities and have found our way of communications, we will all tell you first hand that "people-first" language, though originally well-meaning, is the most offensive language we have ever encountered. We will often correct you and tell you what we want to be called and it is usually always identity-first language. He is autistic. She is deaf or she is a deaf person. He is a cancer patient. She is an ADHDer. Do you call an artist a person who has artistic abilities or a teacher a person who teachers or a musician a person who has musical gifting? No? Then stop trying to do it to us in the disability community. We don't need that.

Saturday, February 28, 2015

This Blogger Will Not Be Threatened

As I was checking on another blog, I found a threat posted to this blog because I blew the whistle about some nasty things that I have observed continuance of. Thank goodness, Facebook has finally allowed people to block pages. It was past time since one can no longer see page administrators. I marked the threat as spam so it could be deleted. I will not be threatened by anyway for anything when it comes to journalistic integrity and reporting the truth on any blog that I write. Anyone who threatens me will be considered a spammer and a threat to the principles of freedom of speech and expression. 

Tuesday, March 4, 2014


It is time that I take serious action about something. And I have just done a level three escalation about the situation to my local authorities.

First, I am going to explain something.

Healthcare.gov has a Facebook page. When it first began, the administrators were very diligent. People seeking information could go there. People who managed to have success with the website could share their stories there. Everything was going well. 

UNTIL some of the so-called "conservatives" began harassing and bullying these people. Yes, you read that right. Harassing and bullying. 

Now what do you do if you are being harassed and bullied? You block the person right? 

So that has been happening. 

Only problem - these people that are being blocked are turning around creating FAKE pages so they can't be blocked, and their pages are being created with one purpose: HARASS and BULLY. 

It is a violation of the Facebook Terms of Service. They know it and they don't care. It is illegal. They know it and they don't care. 

Report the page. Facebook does nothing. 

Report the comments. Facebook might ban the person behind the page for 12 hours and then the COWARD behind the FAKE page is right back at it.

And it is TARGETED.

Here are some of the page names:

Society for the Real - comments on just about everything and is the one that warranted the escalated report today due to the fact that guess what, I wasn't even on the Healthcare.gov page today except to like the story they posted about an individual who was saved from bankruptcy because she got insurance his year. And when I looked at it again, I found that he had high jacked a post that was made in a group and reported over there. I will provide the photo evidence. The post asked how it was even legal for them to be doing what they are doing when what they are doing is in clear violation of the Facebook Terms of Service.

Other FAKE pages that have been set up for the sole purpose of bullying and harassing include:

Tea for America
Truth Seekers
Women Against Obamacare
Demorrhoid Freakfest
Hoolio Mastigo, M.D.
Big Girl Panties
Not voting for Monica Lewinsky ex boyfriend's wife
The Well-Armed American
Affordable Health Insurance
Hairy Reid
Reality Check
Mrs Darcy
I Love My Country, Don't Trust My Government
Tabatha Travares - resurrected herself as a page after being blocked as a person - still harassing me
Non ACA Compliant - using the same exact language as Society for the Real
Blondes United - Suspect this was created by the THREE Anna Blondes
Society for the prevention of liberal lunacy (absolute lunacy itself)

There are many others as well. I challenge anyone to go on the Healthcare.gov page and see what these "conservatives" are doing and then seriously ask themselves why on earth would anyone with a brain or compassion ever vote conservative again after all of that bullying and harassing going on?

Blocked people from that page include THREE profiles under Anna Blonde, Leigh Lajaunie Wilkerson, Shelby Mustang, Daisy Apple, Marianne Ashton, Kane Roberts, John C. Kirsch, Malika Holmes, Peggy Politics, Andy Doyle, Mary C Michaels Ceo, Greg Romane, Barb Schaub, Valarie Murphy, Jessica Neveton, Kathie Church, Happy Ascanbee, Pamela Weishuhn, Tim Sanders

That bottom comment is the proof. Sorry but if you got blocked, it was because someone felt they were harassed by you. This new page form has already harassed me when I wasn't even active! 

Wednesday, August 22, 2012

Coming to Terms

Oh my word! The last several months have been a whirlwind for me! You see, I learned I have autism spectrum disorder, more specifically Asperger's or high-functioning autism. And I still have a lot to learn! As do those around me. Acceptance. Awareness. Education. Understanding. Inclusion. Those are the words that I am challenged with right now. Social skills. Something that is challenging. Communication. Something to be improved in some ways more than others. That's all I really have to say right now.