Author: Grayson Schultz

#ChronicSex Featured on Mashable

Posted on by Grayson Schultz

In Katie Dupere‘s latest piece on Mashable, she shared “14 hashtags that are helping people with disabilities share their stories.”

Guess what made the list? US!

Let’s talk about sex — and disability. It’s an intersection that’s largely ignored, with assumptions that people with disabilities can’t have fulfilling or successful sex lives.

The weekly Twitter chat #ChronicSex looks to give people with disabilities the space to talk about chronic diagnoses, disability and sexuality. Users also share tips and tricks from articles and resources around the web that make sex with a diagnosis or disability more pleasurable.

YAY US!

Definitely make sure to check out the other amazing hashtags featured in Katie’s piece here.

#ChronicSex Chat Questions Oct 27, 2016

Posted on by Grayson Schultz

It’s chat day!

Q1: Please introduce yourself in a way you’re comfortable sharing

Tonight, we’re going to talk about lube since we have a giveaway!

Q2: Do you feel like you know about different kinds of personal lubricants and which might work best for you?

Q3: Do you know the potential dangers of some ingredients in lube?

Q4: Do you know all the potential uses of lube?

Q5: Do you have a favorite type of lube?

Q6: What are your Halloween plans?

Make sure to join us at 7 PM Eastern on Twitter using the tag #ChronicSex – and don’t forget to enter our SYLK giveaway!

SYLK: a fun lube AND a contest!

Posted on by Grayson Schultz

You may have noticed that several of the posts in the last week have been about the wonderful world of lubrication.

There’s a reason for that!

Earlier this year, I was introduced to SYLK.

photo of a SYLK lube tube with water splashing at the bottom

SYLK is a lubricant made from a natural kiwi vine extract of the New Zealand kiwi. This ingredient means that SYLK is able to mimic the lubrication of the body thanks to polysaccharides. SYLK is made in the US, despite the location of the plant.

Remember some of the icky things we talked about watching out for in lube – parabens, silicones, harsh chemicals, and scents/flavors/dyes? Of those, SYLK only has glycerin and, even then, natural glycerin from the vine. This means it’s safe to use with just about any condom, dental dam, sex toy, and more!

It’s been being sold in New Zealand and Australia for over 30 years, and in Europe for 20. It’s also sustainable which is pretty badass.

why

After receiving positive and rave reviews on Amazon and elsewhere from people struggling with illness-related sexual issues, the company began to learn more about what we all go through with illnesses and sexuality. Recently, SYLK reached out to a number of people in the chronic illness blogging world across disease types from Lupus Chick to the Sjögren’s Syndrome Foundation and more.

I struggle with vaginal dryness. It’s like my body doesn’t respond to natural turn-ons anymore, like the connection between my emotions and my vagina is non-existent. Therefore, sex isn’t always comfortable for me simply because I don’t always practice what I preach and utilize lube.

Why?

Well, one of the problems that I have with lubes is that they get sticky. It may not always bother me, but definitely always bothers my partner.

It’s not sexy to feel like you fell into a vat of wet cotton candy.

When I got SYLK to try, then, I was excited to see how things went.

Real talk: it was a surreal moment to realize having sex was totally a part of my job, but I digress.

We really enjoyed the consistency of the lubricant and how effective it was. It also was more similar to my body’s own lubrication and didn’t leave the same sticky residue. In fact, any leftover stickies were easily taken care of with a wet washcloth or bathroom wipe.

As I went through the rest of my day, my vagina wasn’t sticky and it also didn’t feel like there was a glob of incompatible goo jammed up there.

a Rafflecopter giveaway

Winners will be chosen at random on Halloween by Rafflecopter and then contacted for their information, which will then be shared with our contact at SYLK for shipping. We do have samples of SYLK that will be included in future giveaways so stay tuned if you don’t win this round! Please also note: While I received SYLK for free in order to evaluate it, I received no other compensation for this post.

Will2Love: Advice on Breast Cancer

Posted on by Grayson Schultz

Today, we’re talking with Leslie Schover, the founder of a company called Will2Love. Will2Love focuses on “empowering cancer survivors and their loved ones, with expert guidance on the journey to sexual wellness and parenthood.” Leslie is a clinical psychologist who has been recognized internationally as an expert on sexual problems and infertility related to cancer treatment and other chronic illnesses. I had the pleasure of meeting her at Medicine X this year.

What is Will2Love and how did it get started?

Will2Love is a digital health startup company that offers online help to men and women struggling with cancer-related sexuality issues. Free content at Will2Love.com includes blog posts, moderated online forums, webinars (to start soon), and an extensive section of resource links. Starting in January 2017, we will also be offering online self-help programs for men and women for a modest monthly subscription fee. We will also have patient advocates providing coaching by videoconference and are working on building a network of expert psychologists. Currently, the law limits psychologists to counseling patients only in a state where the psychologist is licensed.

Will2Love grew out of my frustration that over a 35-plus year career at MD Anderson Cancer Center and the Cleveland Clinic. I still saw so many patients not get the timely, accurate help they needed with sex and fertility. We had three small business grants from the National Cancer Institute to develop our self-help programs, so we actually did clinical trials that demonstrated they helped people improve knowledge, distress, and sexual function/satisfaction.

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What are some of the self-worth or self-esteem issues that many breast cancer patients may experience?

Breast cancer patients sometimes feel like “damaged goods” if they are having trouble enjoying sex because of pain and loss of desire. Women are socialized to be caregivers and often have difficulty when they, themselves, need help. Changes in appearance are also common, but I think “body image” issues are not as devastating as some of the other physical damage directly to sexual function, memory and attention, long-term fatigue, and fear of recurrence.

We know that each person is different, meaning their experiences of illness are infinitely more different than we can imagine. With Will2Love, do you see differences in how people of different sexual orientations and gender identities experience their breast cancer?

LGBTQ patients very commonly report experiences with rude and homophobic health professionals. Many simply conceal their sexual orientation to avoid the hassle, which can compromise trust and good medical care. We need a lot more research on how sexual orientation and identity affect coping with cancer. Some small studies in the lesbian community suggest few differences in sexual outcomes from groups of heterosexual women. Many lesbian breast cancer survivors believe their partners to be more empathetic and supportive than a man would be. This week there was an excellent piece in the New York Times about a trans man who was diagnosed with breast cancer at 27 and is struggling with concerns about continuing testosterone therapy and whether to have an oophorectomy. His account highlights how little we know.

Contrary to what many believe, men and other penis-havers do get breast cancer. Do they face special issues that those with vaginas do not?

The main complaint unique to men with breast cancer is feeling there is not a special place for them, and having trouble fitting into clinics designed for women with breast cancer. There are some special advocacy groups for male breast cancer and, with the internet, it is easier to find information and support. It also appears that a large minority of men who take tamoxifen as part of their treatment experience problems with their sexual function.

What do you see as the biggest issue related to sex and quality of life for breast cancer patients in particular?

I think the biggest sexuality issue is genitourinary atrophy—better known as vaginal shrinkage and dryness, and consequently, pain during sexual caressing and intercourse. For younger women, these symptoms come when chemotherapy damages the ovaries causing menopause at a much younger age than normal. Some women resume periods for a while, and may also have fewer symptoms, but will still be at risk for an early menopause before the average age of 51. Women at high genetic risk who have prophylactic removal of their ovaries also experience these problems unless they take replacement estrogen (which may be a safe option until age 50 if they also have had both breasts removed). Women who have pelvic radiation therapy (for example if they also had ovarian cancer) have even more severe problems with vaginal size, dryness, and pain. Unfortunately, taking aromatase inhibitors causes all of these problems, often tipping a postmenopausal woman who was able to enjoy sex without pain (maybe using a little bit of lubricant) into a state of total inability to have intercourse. Many women who notice a loss of desire for sex are reacting to the fact that having sex hurts!

What are some of your favorite resources for breast cancer patients?

Will2Love! Honestly, I created Will2Love because at least for sexuality, I thought existing internet and book resources were really inadequate—superficial, repetitive, limited just to personal stories rather than giving practical advice, and often wrong! I also think our programs do a better job of addressing the emotional aspects of infertility than anything else out there. However, I think that support groups and advocacy organizations are extremely helpful to women. For breast cancer, there are many specialty groups – for example for women diagnosed during pregnancy, women considering fertility preservation, women of color, gay/bisexual women, men with breast cancer, etc. It can be very helpful to discuss questions and concerns with someone similar to you. Large groups like

Large groups like breastcancer.com, Living Beyond Breast Cancer, and the American Cancer Society provide lots of high-quality, up-to-date information on all aspects of breast cancer. The Cancer Support Community and Cancer Care are two of my favorites because they provide free or low-cost counseling and support for cancer patients, online, by phone, or in person.

What are some steps that breast cancer patients and survivors can take in order to take back their sex lives?

First of all, start on your own, without the anxiety of worrying about pleasing a partner. Find ways to view your body positively, and to get pleasurable feelings. If you do not have religious objections, try self-pleasuring with hands or vibrator, and read some erotic stories. Once you see that you can have sexual feelings, teach a partner how to give you pleasure, despite the changes in your body. Try not to buy into our cultural expectations of sex as a performance, with “foreplay” as the first act and “intercourse” as the finale. Instead, work on sex as sharing of physical pleasure, emotional intimacy, and erotic fantasy. If you are not in a relationship, work up to meeting new people. Try online flirting or role-play with a friend on how you would tell someone new about your cancer history. If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest

Once you see that you can have sexual feelings, teach a partner how to give you pleasure, despite the changes in your body. Try not to buy into our cultural expectations of sex as a performance, with “foreplay” as the first act and “intercourse” as the finale. Instead, work on sex as sharing of physical pleasure, emotional intimacy, and erotic fantasy. If you are not in a relationship, work up to meeting new people. Try online flirting or role-play with a friend on how you would tell someone new about your cancer history. If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest

If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest ways to stretch and lubricate your vagina and prevent vulvar irritation. Start with nonhormonal options, but if they do not help enough, consider the risks and benefits of using medications like ospemifene or low-dose forms of vaginal estrogen. Keep your oncologist in the loop, but do not be surprised if your gynecologist is less concerned than your oncologists about the risks of any type of estrogen treatment.

Make sure to check out Will2Love for more information on the amazing work they’re doing for all types of cancer.

Lube 101: Types and Things to Think About

Posted on by Grayson Schultz

Last week, we talked a little bit about the awesomeness that is lube. This week, we’re talking types of lube.

Oil-based

These lubricants can be pretty fun, but also pretty messy. Some kinds you might know are vaseline, mineral/baby/coconut oil, and lotions. Perhaps the biggest pro to these lubes is that they are long lasting and can be really great for people who have extreme genital dryness.

The biggest downsides:

They can break down latex condoms and rubber toys! Make sure to utilize polyurethane condoms with these kinds of lube.

They can also make it easier to get infections. If you have any issues with your immune system, I’d stay away.

You feel pretty sticky or slick afterward.

Silicone-based

These lubes . Some brands you may know include Überlube and Astroglide. One of the biggest perks here? These lubes are waterproof AKA they’re great for water-based sexy activities. These also tend to feel pretty silky, which many people enjoy on their own or with others.

Drawbacks? These stain pretty well and are not compatible with silicone sex toys.

Water-based

Lubes in this category tend to be the easiest to utilize in a variety of situations because they’re compatible with all sex toys and generally can cause less irritation than the two above categories. Brands you may be familiar with here include KY and Liquid Silk. Clean-up is a breeze with these as all you need to do is rinse, unlike the two categories above which need soap to really leave.

The biggest downside? Some can contain glycerin or, if flavored, sugar which can promote yeast infections. These can also dry out pretty quickly, meaning that you may need to add water or a little spit to reactivate the lube.

These can come in liquids, gels, and creams, so don’t think it’s all liquid-only.

Some good things to know

If you have sensitive skin, it may be good to stay away from lubes that contain extras like parabens, glycerin, or various flavorings or scents. Glycerin can also cause an uptick in yeast infections – and can be commonly found in water-based lubes – so make sure to read the label.

Allergies and reactions can happen to just about any lube. It’s always important to know your allergies as well as the allergies of others you may be intimate with in order to be completely safe.

There are also hybrid lubes, combining the above categories. Make sure to read the label.

Your bum does not really have natural lubricant of its own, so ALWAYS use lube with bum fun.

The lubricant that is right for you will depend on the activity, how many people are involved, where this is taking place, allergies/irritations, and what your end result may be. If you are looking for a lube to aid with everyday vaginal dryness, for example, you may want a different lube than if you were involved in sex with a group with an armory of sex toys at their fingertips – which will be different than lube you may want to use for masturbation, mutual or on your own.

Please make sure to join us next week when we will be discussing one of the best lubes out there. You will have a chance to enter to win a bottle!

World Arthritis Day

Posted on by Grayson Schultz

Many of the resources you’ll find on our Resources page actually come from arthritis-related organizations and writers. There’s a good reason for that.

Both Mariah and I deal with types of arthritis. We began writing on our personal sites about our lives with arthritis and how it affects everything from bathrooming to sex. We are incredibly lucky to travel in many of the same illness circles, leading us to be able to see each other a few times a year in a world where we’re lucky to see our siblings that much in person. We even presented at the Juvenile Arthritis Conference for the Arthritis Foundation to discuss relationships and sex with the 18+ young adult crowd this year! (Looking for the resource sheet we used? CLICK HERE!)

kirsten, mariah, and stephen keegan presenting at the 2015 juvenile arthritis conference east

World Arthritis Day is a day to raise awareness of all things arthritis, from our medications to how it affects our lives to more.

Did you know that ‘arthritis‘ is an umbrella term? Over 120 diseases that have arthritis (inflammation and/or stiffness in the joints) as a symptom. These can include things like degenerative diseases of the spine, Fibromyalgia, Rheumatoid Arthritis, Crohn’s Disease, and more.

While we may more commonly imagine osteoarthritis when someone says ‘arthritis,’ infants can even be stricken by forms of arthritis. Types of Juvenile Arthritis affect over 300,000 children in the United States and even more worldwide.

Some types of arthritis have been shown to have genetic links or to be hereditary like Ankylosing Spondylitis. Others, like Fibromyalgia, have been shown to have ties to trauma and injury. An interesting study examined the rates of Fibro in those who survived the Holocaust and their peers, finding that those who went through the traumas of the Holocaust had far higher rates of Fibro.

If you deal with one or more types of arthritis, please know that we are here for you.

National Coming Out Day: Kirsten’s Journey

Posted on by Grayson Schultz

Today is National Coming Out Day.

In our heteronormative society, the expectation is that we are all straight until we feel comfortable asserting that we are not. The trick with this is that sexuality doesn’t fit into labels. It’s more of a spectrum.

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Personally, I used to consider myself bisexual, meaning that I was attracted to both males and females. As I grew and changed, I began to identify more with pansexuality. Pansexuality is very similar to bisexuality but, instead means gender of who I fall for doesn’t matter at all.

My journey as a bisexual person was not easy, though, and changing labels was hard. As a college student, I watched a family member come out to my abusive mother as bisexual. They received those age-old responses such as this is just a phase or you’re confused. The same evening, I told my mother that I often felt like a dude instead of a woman. Her response was, essentially, I don’t have time for this. She told me to never bring that up again.

I knew then that she could never know about my sexual orientation. I held onto it and hid it.

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Coming out isn’t always just about our sexual orientation, though. It can also be about our gender identity.

Again, in our society, it is assumed that we all fit into the gender assigned to us at birth. Like sexual orientation, this can change throughout our lives.

I have always been a tomboy. When I was 12, my uncle left for military service and I would wear some of this more manly clothes from time to time while he was gone – suits, etc. Aside from my gigantic chest, I made a decent looking dude.

It wasn’t until recently, though, that a conversation with another sex educator helped to highlight what I somehow had always known – I am gender fluid more than I am one specific binary identity.

This means that some days, I feel more male than female or vice-versa. Other days, I am something all completely my own. I now have a packer which is a penis that I can choose to wear on those days I feel more male.

awww

It isn’t always safe to ‘come out’ to others. Whether or not you’re able to do so, please know that you are loved for exactly who you are.

Breast Cancer Reality: Debbie

Posted on by Grayson Schultz

In April of this year, we lost my partner’s aunt to metastatic breast cancer. She dealt with BC off and on for the bulk of our relationship. She hated the pink-ribbonized version of BC thrown about, the organizations ‘raising awareness and funds’ for BC and yet, in the end, doing more harm than good. To honor her and the many women I know living with BC during BC Awareness Month/Pinktober, I wanted to do something special. I’ll be featuring a few stories from amazing peeps about their BC battles.

Today, you’ll hear from my friend Debbie, a purple-haired badass.

Greetings! My name is Debbie. I was diagnosed with Breast Cancer when I was 43.

Two years ago during Breast Cancer Awareness month, I found a lump and multiple tests later confirmed it was BC. I was told by my doctor in an almost mechanical way what my next steps were. I was going to have a mastectomy, speak with another doctor about reconstruction, and discuss treatment after pathology reports are in. Insurance would not allow the removal of the “healthy” breast.

I knew instantly I wanted no reconstruction and just wanted to have the surgery and get the cancer out! I was questioned about my decision to reject the offer for reconstruction and all I can say is it was a personal choice. I would be scared to go through with that procedure with a healthy body!

debbie with words that say 'i am a woman regardless to breasts'

So fast forward, it’s invasive and they found 3 tumors, estrogen and progesterone positive. A suggestion for chemo is quickly turned down. Again, a personal choice. I agree to Tamoxifen, a drug I will take for the next five years.

Fast forward to the next year – new insurance, new doctors. They recommend I have my ovaries removed to decrease hormones I produce. I agreed, full hysterectomy was optional (I’m 43 no more babies for me). I find a doctor who is willing to take my other breast at the same time.

For many reasons, I felt unbalance – the other breast now was a worry to me, a reminder of happened to the other one. 

So I have both procedures on the same day.

By now the meds have affected my libido which should be the last thing a cancer patient thinks of… not.

I’m still me and want that physical connection with my partner.

We have both been through this together and, thank goodness, he is patient. After the final surgery, things got drastically worse in that department.

No desire – none, it was gone.

I had to try to mentally build myself up to engage with my partner, not to mention the surgery left me with unwanted muscle spasms and get ready for this… a shortened vaginal canal.

Yes, there is such a thing!

They even sent me to Vagina PT – strangest doctor visit in my life but what we won’t do to try to feel “normal” again…

I share my intimate details after breast cancer to let other women know they are not alone.

Pink ribbons could never bring awareness to the multiple surgeries, sickness, pain, body modifications, scarring, medications that make you sicker, etc. Breast cancer affects us all in more ways than the fact that we no longer have one or both of our natural breasts.

Thank goodness for pages like Flat and Fabulous, Stupid Dumb Breast Cancer, and Chronic Sex! We are able to talk about these things. This is the real awareness.

If you would like to share your illness story, especially during an awareness month, please let us know!

Why Movements Like #PatientsNotAddicts Are Ableist

Posted on by Grayson Schultz

The website Stop Ableism defines ableism as the following:

Practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities — OR — a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

With the recent conversations about the abuse of opiates in the chronic pain community, I find myself thinking about this definition a lot. There are patients who use hashtags for other movements to show their battle with pain instead of creating their own grassroots movements, watering down support and resources for patients like those of us with mental health struggles.

The biggest offender lately is a recent movement that has begun to try to normalize the need to take opiates and other controlled substances to handle chronic pain called #PatientsNotAddicts.

I understand the need to utilize something to share how chronic pain patients do not experience a buzz or high from these medications but instead some semblance of pain relief. I understand the need to help share that these medications allow us to play with our kids or cook or clean or go to work.

As someone who takes multiple controlled substances, I certainly know how important they are to my day and to my overall quality of life.

We forget something integral when we use tags like #PatientsNotAddicts though — addiction is a disease with clear genetic components to it. Like my invisible chronic pain related illnesses, you cannot see addiction. Like types of arthritis, addiction can affect your internal organs and skin. Like PTSD or fibromyalgia, addiction can be triggered as a result of trauma and insufficient help.

We are simply adding to the stigma facing others by using this phrase in addition to making patients feel uncomfortable enough that they leave patient communities and lose desperately needed support. At what point is it okay to take down others struggling with illness in order to make us look better? Would we allow this in, say, the fibromyalgia community if the rheumatoid arthritis community did something similar?

I’d like to think not, but I didn’t think we would have a conversation over this with addiction, either.

I have received countless messages from other patients frustrated with how this movement depicts others or themselves.

I had one patient who has faced addiction issues in the past tell me they cannot follow some of the amazing leaders within the greater patient community because these leaders share articles or pieces that make them feel like garbage. This person has had to leave groups and stop doing work on activism because they continually run into these hurtful ideas.

And that’s not the only negative aspect of these issues I’ve heard.

We need to take a note from intersectional feminism and acknowledge that we have biases. We need to discuss that these biases make the movement less relevant and more harmful in dividing the greater patient community. We need to talk about how access to care and education impact how patients are seen and heard. We need to desperately address how racism affects pain relief and the diagnosis process for many patients.

Aren’t patients with addiction issues still patients? Do they not deserve pain relief or to be included in these conversations?

While there were good intentions with this movement and others like it, they have unintentionally removed humanity from our fellow patients. We have become no better than the stigmatizing pieces that CNN and Fox News run on opiates.

I don’t know about you, but I don’t think that’s something to be proud of.

Originall published on Medium.

You Can Help Stop the Reduction of Opiates in 2017

Posted on by Grayson Schultz

In case you haven’t heard, the latest tactic to fight the opioid overdose epidemic – and, concurrently, screw us chronic pain patients over – is here! For next year, 2017, the DEA is going to reduce the supply of Schedule II drugs.

Way to go, buttheads.

Chronic pain patients aren’t taking this sitting down, though.

My pal Anita is a badass. Clearly, she and I are trouble together.

Because of her chronic pain illnesses, she has started a petition on Change.org to ask the DEA to reconsider the reduction of the opioid supply. She’s been through a lot but asks that I not necessarily go into details about her life because “I want this to be ours all of ours.”

She goes on to say:

I have been a little aware of this restriction of Opioids for some time. I was sorta scared but also ignored it as I am in the process of applying for disability and that is stressful in itself. It wasn’t until my pain doctor, who I thought I had a great rapport with, said some ableist things and tried to stop my opioid meds all together… As upset as I was, it sorta woke me back up that relying on the system without keeping it in check, the system will always choose their own best interest. Though it was reading the article in the petition [and linked above here] that really just fired me so up that I had to do something. Being that I was an activist by way of physical protest and was used to doing things my body can no longer do, this was the only thing I could think of to do. I hope to at least create some awareness on the issue, get some people fired up and hopefully help people understand we aren’t addicts we just want to be able to live.

So, what can you do?

Sign Anita’s petition. Share it. Put it on Facebook and Twitter and Tumblr and other social media. Email it to your friends and family members.

Help us stop the ridiculous treatment of chronic pain patients here in America.