Author: Grayson Schultz

Awareness Calendar for June

Posted on by Grayson Schultz

Here are the things the month of June is all about:

  • Adult Sex-Ed
  • Aphasia
  • Cataract
  • Congenital Cytomegalovirus
  • Hernia
  • Hunger
  • LGBTQIA+ Pride
  • Men’s Health
  • Migraine & Headache
  • Myasthenia Gravis
  • PTSD
  • Scleroderma
  • Scoliosis

Specific days/weeks:

  • World Hypoparathyroidism Awareness Day (1)
  • National Cancer Survivors Day (4)
  • HIV Long-Term Survivors Day (5)
  • National Headache Awareness Week (5-11)
  • Caribbean-American HIV/AIDS Awareness Day (8)
  • Cervical Screening Awareness Week (12-18)
  • Men’s Health Week (12-18)
  • World Blood Donor Day (14)
  • Autistic Pride Day (18)
  • World Sickle Cell Day (19)
  • Helen Keller Deaf-Blind Awareness Week (24-30)
  • National HIV Testing Day (27)

Stay tuned for more about some of these amazing topics!

World MS Day May 31 2017

World Multiple Sclerosis (MS) Day

Posted on by Grayson Schultz

It’s World MS Day!

The day was started back in 2009 by the MSIF – the MS International Foundation to raise awareness about MS.

Wait, what is MS again?

MS is a neurologic disorder where the myelin, which protects the nerves, starts disappearing in the brain and spinal cord. Scientists don’t have a cause yet, but this is an autoimmune disease. Essentially, the Immune System is destroying the myelin – AKA a large part of the Central Nervous System (CNS). T cells, the badasses of the Immune System, help carry out the friendly fire.

There are four kinds of MS. I know that I can’t do them justice, though, so I suggest visiting the National MS Society’s page on this for more info. The damage done by the disease can only exist for the duration of a flare-up or relapse. It can also improve a bit when that period is over or become permanent. Some of that depends on the type or the severity of the damage, and some of it seems to be unexplainable.

MS symptoms include fatigue, numbness/tingling, weakness, vision issues, spasticity, dizziness, bladder and bowel problems, pain, speech and swallowing problems, tremors, and more. The diagnosis process is tricky because of how many diseases can share these symptoms and the lack of a defined singular test.

Like in so many conditions, diagnosing MS means taking into account a patient’s history, their familial history, conducting a physical exam, and labs to check for other issues. A B12 deficiency, for example, can mock a lot of these symptoms. Then, of course, there are the bigger tests – MRI, Evoked Potentials, and checking spinal fluid through a spinal tap.

That said, around 5% of people don’t show their MS on MRIs.

Cue my inner screaming at the fact that we don’t know what’s currently going on with me but my MRI looked ‘normal.’

2.3 million people around the world deal with MS that was, more often than not, diagnosed in their later 20’s/early 30’s. It is more common in women, unfortunately.

There is also a genetic factor.

A Chronic Sex Connection

I have a personal connection to MS in that my great grandma Katie dealt with it. We watched her go from using a scooter rarely to relying on it and being unable to go out. I baked with her when I was little and she’d put me on the countertops to reach the cabinets. That is until she got a grabber and I got too big.

In the 70’s and 80’s, there just wasn’t enough information about MS. Doctors didn’t know what to look for and didn’t have the right equipment anyway. They gave Katie the runaround and told her those stereotypical things women are told about illnesses doctors aren’t educated enough on.

A later-middle-aged woman with short dark hair, glasses, and a white dress with black buttons and a black belt plays with a fat baby who has a white headband, white dress, and white shoes/socks on
Yeah, I did just post a picture of baby me and my great grandma on the same site I talk about my vagina

More education and better technology came in the 90’s. Still, it doesn’t do much without better medications which only recently came about. Katie passed away in 1999 as a result of complications from her disease.

What about MS now, though?

Thankfully, there are a variety of treatments for MS now that make it a lot easier to live well. More awareness about MS has been coming about lately, too, because of the willingness of celebrity patients – like Teri Garr, Jamie-Lynn Sigler, Jack Osbourne, and Montel Williams – to speak up.

Jamie-Lynn Sigler (via IMDB)

Jamie-Lynn has actually opened up about how MS affects her sex life and relationship:

First and foremost, [sex] is the last thing on your mind at the end of the day. That’s not where your head’s at. It’s a part of you that you can forget that is still really important. Sometimes pushing yourself to have sex can be like, “Oh yeah, I do enjoy this! I do enjoy this part of me!” You’re laying down, you can definitely make it work for yourself. And then there’s physical things that affect everyone. For me, because I have bladder issues, I have to make sure I always…like, spontaneity is out the window, so I have to make sure I go to the bathroom before. So there’s certain ways I have to manage it and be responsible with it. But you don’t want to lose feeling sexy, and I can feel that sometimes, where I’ll say, “I don’t feel sexy. I don’t feel good today.” Like, I feel dumpy. My husband is wonderful and great at making me feel good about myself—or trying to at least! But, like I said, there’s times I’m like, “I’m going to do this for him,” and then realize it’s actually for me too.

Jamie-Lynn touched upon a lot of issues with sex and intimacy. Fatigue, pain, and body image issues are big ones for sure.

Physical issues with sex are often overlooked for MS patients. That said, this is actually a population that is getting studies around sex done! Vaginal dryness and difficulty orgasming are two big things for vagina-havers. Orgasms and erections become tough for penis-havers as well.

Changes in someone’s sex drive can affect their relationships, too. That’s part of why communicating with your partner(s) is an important part of any sex life, but especially one with illness/disability involved.

Who to Follow

Vibrant Memorial Weekend Sale

Posted on by Grayson Schultz

Our affiliate, Vibrant, is having a sale this weekend! You can save 25% off your entire purchase when you use the code SUMMER2017.

You have through Monday to snag your goodies!

Remember – all proceeds from Vibrant go to support Planned Parenthood of the Rocky Mountains.

With the current political climate and funding issues they’re encountering, they need our support more than ever. They’re closing several clinics, including the one location they had in Wyoming – which is now the second state after North Dakota to be without a single Planned Parenthood. Colorado is losing two clinics and New Mexico is losing three.

#IAmAPreExistingCondition

Posted on by Grayson Schultz

#IAmAPreExistingCondition – it’s a hashtag and a movement.

Many people are flocking to social media and writing platforms to share their concerns over the AHCA. Celebrities, patient activists, and others have been sharing how their conditions or lives will be affected. Groups are even starting video projects in order to help abled people understand what those of us with conditions and disabilities will face.

Hell, you can even get things set up to have your ashes sent to GOP peeps who voted for the AHCA if it becomes law and you pass away because of it. Here’s a breakdown of Republicans in the House that voted in favor btw.

The AHCA is incredibly dangerous. As it stands right now, the bill targets special education, potentially turns sexual assault and C-sections into pre-existing conditions, and affects even those on employer-based plans. It affects the LGBT+ community even more – something we don’t need more of, especially after the latest Executive Order.

Reps have even had the audacity to rule themselves exempt from these changes. The only potential upside is that at least the Senate won’t be voting on this specific bill? But that also gives them more time to fuck us over with worse shit.

I touched on this over at my other site, Not Standing Still’s Disease, but… bills like this one just remind those of us who aren’t abled that our lives aren’t considered as worthy as others. This isn’t new news but brings up a lot of hurt.

It’s important to remember our history. For example, Holocaust killing methods were perfected on us precisely because our lives weren’t as valued. The Capitol Crawl, where so many of our siblings and leaders harmed themselves in order to ensure our rights, was only in 1990 – and it’s still not enforced.

Want to join us?

Use the tags #IAmAPreExistingCondition and #HealthHasNoParty on social media.

Use this awesome photo from Liz Salmi and Hugo Campos:

I am an American with a Pre-Existing Condition #HealthHasNoParty

You can even use free services like PicMonkey to create collages with this photo and others related to your illness journey like I’ve done here:

Tag your representatives, local news offices, and others.

Record videos. Share them.

Write on Medium or other platforms.

Contact your elected officials in whatever way you can.

Remember that you can text RESIST to 50409 to utilize Resist Bot, which will compile your thoughts into a fax. This is far more likely to be read than email – and easier for many of us than calling. You can do it every single day.

May is Masturbation Month!

Posted on by Grayson Schultz

Masturbation.

There’s no better way to learn what we do and don’t like. But what else can masturbation do for us?

Plus, have you ever seen what it does to your brain? Cause it’s kind of amazing {gif alert}.

The problem is that there is a gender gap when it comes to orgasms in general. With regards to self-pleasure, many vagina owners weren’t told that masturbation was okay or natural. This all serves to make us sexual objects for our partners instead of for ourselves.

There is hope! Sweden and other progressive countries are including info on self-pleasure in their hella comprehensive sex ed – and it’s working to help close the gap.

Masturbation May has quite a history – but one that’s already been covered by some amazing writers. Check it out.

Some people like to ‘do it’ themselves while others love to utilize toys. Here is a primer on how to use a vibrator – and what you should know before buying your first one. Make sure to visit our Pinterest board dedicated to masturbation and sex toys for more motivation and information.

Whatever you do, just watch out for toxic and unsafe toys. That’s why I recommend companies like Tantus, Vibrant, and Fun Factory – you know you’re getting safe and quality products!

Grab bags are cool – you choose what kind of toy you want by the shape. Then, Tantus sends you a random-colored toy at a discount. Sweet, right? Tantus’ sale ends on Thursday, May 11, so get clicking!

In case you need some motivation, here are ‘35 Reasons You Should Add Masturbation to Your Self-Care Routine.’ Hell, Jane Fonda of Grace & Frankie does it often! (PS I’ve finally binged on G&F and cannot recommend it more.)

Oh, and did I mention you can masturbate for a good cause? Learn more here.

Survey: Experiences Related to Sexual Orientation

Posted on by Grayson Schultz

Emma – a friend of a friend – is working on her Ph.D. She’s currently researching how our sexual orientation affects our life experiences. This particular survey asks questions about sexual orientation, stigma around that, and health.

I took this and it was really easy. This survey takes about half an hour to finish. It’s anonymous and. At the end, you can enter your email to win an Amazon gift card!

Click here to help out with this academic research.

Awareness Calendar for May 2017

Posted on by Grayson Schultz

May is a large month for awareness fun.

  • ALS
  • Arthritis
  • Asthma and Allergy
  • Bladder Cancer
  • Brain Cancer
  • Celiac Disease
  • CRPS
  • Cystic Fibrosis
  • Digestive Diseases
  • Ehlers-Danlos (EDS)
  • Foster Care
  • Hepatitis
  • High Blood Pressure
  • Huntington’s Disease
  • Lyme Disease
  • Lupus
  • Masturbation
  • Melanoma
  • Mental Health
  • Myositis
  • Neurofibromatosis
  • Osteoporosis
  • Skin Cancer
  • Stroke

In addition to these month-long initiatives, there are days and weeks devoted to raising awareness for things:

  • Asthma (2)
  • Foster Care (2)
  • Barrier Awareness (7)
  • Infertility Survival (7)
  • Stuttering (7-13)
  • Fibromyalgia (12)
  • ME/CFS (12)
  • Neuropathy Awareness Week (second full week)
  • Honor LGBT Elders (16)
  • Hypertension (17)
  • International Day Against Homophobia, Transphobia and Biphobia (17)
  • HIV Vaccine (18)
  • Hepatitis Testing Day (19)
  • World Autoimmune Arthritis Day (20)
  • Pansexual & Panromantic Awareness (24)
  • Heat Awareness (26)
  • Digestive Health (29)
  • MS (31)

Note: I consulted a half-dozen websites for a lot of the data that I didn’t already know. If I missed something, please let me know in the comments!

NIAW Roundup

Posted on by Grayson Schultz

We’re rounding out NIAW. I was hoping to bring some personal stories about infertility up this week. Between traveling, my master’s capstone, and other people living their lives and dealing with their illnesses, that didn’t happen.

In lieu of those, here is a roundup of articles and pieces on fertility:

USA TODAY Partners with RESOLVE to Heighten Infertility Awareness

Infertility Awareness Week Reminds Us That 48.5 Million Couples Worldwide Need Fertility Help

National Infertility Awareness Week: A Chance To Support Those Facing Infertility

Infertility: When adoption is not an option

IVF versus adoption: Why ‘just adopt’ is not the answer

Please, Stop Telling Infertile Couples to “Just Adopt”

Arab Americans, African Americans, and infertility: barriers to reproduction and medical care

Is male infertility a social blindspot?

Slavery Segregation and Racism: Trusting the Health Care System Ain’tAlways Easy! An African American Perspective on Bioethics

What “Avengers” got right about Black Widow: Infertility is devastating — even for superheroes

Most Men Know Surprisingly Little About Their Own Fertility

Fertility options for transgender persons

22 Things You Should Know About Fertility

20 Things Transgender People Might Want To Know About Fertility

Cancer and Fertility

Life, Interrupted: A Young Cancer Patient Faces Infertility

How can cancer affect fertility?

April 23-29 is National Infertility Awareness Week

Posted on by Grayson Schultz

The subject of kids is one that’s hard to talk about in chronic illness and disability communities. Part of it is the infantilization we as adults experience due to our conditions. Part of it is due to how difficult it may be to date. A lot of it has to do, though, with fertility and the ability to carry a fetus to term.

We disabled and ill are judged for trying to have children – and we are judged if we cannot.

Infertility is simply an umbrella term. What it means is that a heterosexual couple has been unable to conceive over the course of 6-12 months (depending on ages involved). It affects one of every eight couples.

Conditions that can affect fertility range from Endometriosis and Polycystic Ovary Syndrome (PCOS) to physical and hormonal issues to medication-related issues. Medications can make it difficult to conceive, whether for a specific time or longer. Many medications haven’t been observed in pregnancy and therefore have unknown risks to both parent and fetus in utero. Others, such as methotrexate, are known to be toxic for fetuses.

Forced sterilization is a reality that too many of us have lived through, from New Zealand to the US and beyond.

There are many ways to deal with infertility ranging from adoption and surrogacy to IVF and other fertility medications to living child-free. If people choose to go through IVF and other fertility treatments, these aren’t always covered by insurance. In fact, only 15 states mandate some sort of infertility treatment coverage. The ACA didn’t expand coverage requirements in this case – which is, frankly, a disappointment.

Living with infertility is costly.

If someone aims to have kids, they have to deal with medical appointments and the charges associated with IVF/infertility treatments.

Surrogacy is expensive, especially as it generally means the family pays for medical care for the surrogate.

Adoption is also incredibly expensive. Depending on illness/disability, socioeconomic status, race/ethnicity, relationship status, gender identity, or sexual orientation, it may be impossible to adopt. Denials are not rare, again especially for those of us with illnesses or disabilities.

Adoption is also incredibly expensive. Depending on illness or disability, socioeconomic status, race/ethnicity, relationship status, gender identity, or sexual orientation, it may be impossible to adopt. Denials are not rare, again especially for those of us with illnesses or disabilities.

The emotional toll infertility takes is horrendous. When we can’t conceive, it can make interacting with family difficult, whether that’s being asked when you’ll have kids or interacting with kiddos you may never have on your own. Hell, even being on social media can be taxing. Everyone posts cute pictures of their children. They don’t mean to trigger reminders of pain but inevitably do.

This can all take a terrible toll on our intimate relationships as well.

This week, Chronic Sex will focus on sharing resources and experiences of people dealing with infertility.

If you struggle with fertility issues, know that you aren’t alone. There are many resources that exist, such as RESOLVE: The National Infertility Awareness Association.