Urgent Research Opportunity on Sexual Education with Disabilities

Posted on by Grayson
 
URGENT!
 
One of my pals Sarah is currently working on her dissertation at the University of Cambridge. She put together a great study centered on sexual education for people with disabilities in the UK. Unfortunately, a ton of people haven’t responded and, with a deadline already gone by, she’s without data.
But, guess what? YOU CAN HELP!
For more information on the study, please click here. Note that originally Sarah was limiting her research to the UK. However, due to a lack of responses, you can respond regardless of where you live or were educated.
If you can help, please download this Word document and email it to Sarah.

 

NASH: The silent and often forgotten cause of liver problems

Posted on by Grayson
Nonalcoholic Steatohepatitis, or NASH, is a more severe form of Nonalcoholic Fatty Liver Disease (NAFLD). It results when fat builds up in the liver causing inflammation, and it’s a growing health problem that is already the second-leading cause of liver transplant in the U.S. By 2020, it’s expected to be first. Over 12% of Americans are affected by NASH making it the second most common cause of liver transplant.
While I don’t deal with NASH myself, my mother has it. As I’ve said before, we don’t talk, but I think it’s important that I’m educated about it and help raise awareness of it among others. I’m not going to ignore that there is a genetic link – those that carry a certain gene have a greater chance of getting NAFLD and NASH.
There isn’t really one specific cause for NASH, but if you have type 2 diabetes, prediabetes, obesity, high cholesterol or high blood pressure you may be at greater risk.
In some cases, NASH patients might have pain in the upper right side of their abdomen along with fatigue. Symptoms like an enlarged liver, insulin resistance, and cirrhosis may lead to further testing. However, NASH can go undetected for decades because symptoms are often minimal until the disease has advanced, so if you’re at risk it’s critical to have regular blood function tests during your annual physicals. Blood tests, ultrasounds, CT scans, MRIs, or biopsies are other common types of testing for liver disease.
To me, the scariest thing about NASH is that over time, it can cause serious complications like cirrhosis (severe liver scarring) and liver cancer.
With no FDA-approved medications yet available to treat NASH, options for managing the disease are limited to diet and lifestyle modifications. If you or a loved one has NASH, talk to your doctor about participating in a clinical trial – you can learn more at www.NASHStudy.com. But for now, maintaining a healthier lifestyle is the best way to help control NASH and reduce some of the top risk factors like obesity.
Look, losing weight and eating healthy aren’t easy. Trust me, I know. It doesn’t get any easier the less active we are, though.
In the past, I have tended to overdo things when I’m feeling well from my various invisible illnesses. A few weeks ago, I went from agonizing pain to relief overnight and decided I should go running.
This was not a good idea for me.
Still, that doesn’t mean that I’m not active. Since finally getting the release from my rheumatologist to be able to do yoga again, I’ve been keeping up with stretching every single day. I try to do a bit every few hours.
Right now, that’s all I can do – and that’s okay. I know I can build up to being more active, especially as the weather outside becomes less full of ice and snow.
As far as eating goes, I just had a visit with my rheumatologist. Since I’m not able to be maybe as active as I’d like, we discussed supplementing some of my activity with a bit of a better diet. We talked about the potential benefits of a Mediterranean diet for those of us with autoimmune/autoinflammatory diseases and decided to head in that direction.
It makes the most sense for me anyway. When I cook, whatever meal it is tends to have an Italian spin on it.
My rheumatologist’s nurse always comes in last and we went over her tips and tricks for eating well – high-quality olive oil to dip bread in or fry up lean meats, a handful of nuts like almonds every day or so, and getting those fish-supplied Omega-3s.
The trip to the grocery store afterward wasn’t necessarily the cheapest, but the subtle changes I’ve made so far have, at the very least, helped me feel a little healthier. The nice thing is that we are giving it time. I have until my next appointment with them in July to fully adopt this diet.
Thank goodness, because I don’t know how I’m going to give up tacos… maybe I’ll just make them Italian.
Disclosure: This post was sponsored by Intercept Pharmaceuticals, Inc. a biopharmaceutical company, and should not be construed to constitute medical advice. My personal story and opinions are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation, including whether enrolling in a clinical trial, such as NASHStudy.com, could be the right option for you.  

 

Diagnosis: Nothing

Posted on by Grayson
I woke up way earlier than I have in a while to head in for an MRI this morning. It went pretty well and very quickly. I was told I should hear something by tomorrow.
But, surprise, my neurologist shot me a note just now! Unfortunately, the results really don’t help do anything but rule out some stuff.
Everything looks fine in my noggin and neck. I do have “prominent lymph nodes noted within the upper neck and submandibular regions” AKA the lymph nodes I’ve always had swollen for approximately 23 years. Of course, the left side is generally worse on a day-to-day basis in regards to the lymph nodes.
There are no lesions, hemorrhages, stenosis, or really anything.
Real talk? I’m glad this isn’t MS. I’ve talked about how that scares me just because of my experience with my great-grandma passing away from related complications. Yes, this was in 1999 and there have been great advancements since then, but it’s still a scary thought. I had kind of made peace with the fact that it might be and steps to take afterward and all of that.
The fact that I have no answers after all this testing kinda sucks.
At least I know that this neurologist is ready to stay by my side and figure out what’s going on. And, hey, maybe we can get my migraines under control, too.

 

New Post on Healthline

Posted on by Grayson
I’ve been writing a few pieces for Healthline like a real writer and getting paid and all that? What?
Surprise!
I’m writing about health fun, most specifically on relationships, sexuality, sexual health, and all that good stuff. You know my niche.
Check out the new post – In Sickness and in Health: Making Love Last While Living with Chronic Illness. It also features hella cute drawings someone did of T and me!
If you missed my first piece with Healthline, here’s that one too – Let’s Get Intimate: 8 Tips for When Chronic Illness Gets in the Way of Your Sex Life.

 

The Quest for a Diagnosis

Posted on by Grayson
In one of my most recent posts, I brought up how I am fighting to get a diagnosis for what’s going on with me.
I had a consult with neurology on March 10th. We agreed, because of my already illness-ridden body and familial history of neurological disorders, that we needed to run a battery of tests. On my way out of the appointment, I stopped and we ran a ton of blood tests.
As of today, they’ve all come back normal with no abnormalities.
It’s relieving to know that I don’t have some of the issues we’ve tested for – myasthenia gravis or protein in my blood or any of that… but it also really sucks. I wish that things were a little different. As of right now, the idea of Multiple Sclerosis and my great grandmother keeps sitting in the back of my mind.
Again, I know things have come a long way and I have doctors that don’t and won’t dismiss my symptoms as hysterics. I know that I have a support system that will allow me to fight my hardest, including awesome people in my life with MS.
My MRI on the 21st is coming closer and closer.
I know it has the ability to show me what is going on – MS, Cancer, Chiari, etc. I’ve been focusing on the MS equation because of PTSD from watching Katie Mae deal with it, but also I think in part because I don’t necessarily want to think of other options.
you can buy these at www.katemccombs.com/teaandempathy/
I’m not letting myself feel my feelings as much as I should. If I do right now, frankly, the depression will get me. I’m in denial a bit but also simply can’t allow myself to go there. If I do, I won’t have the fight I need to get shit done.
It’s not easy to get used to what’s going on right now.
Within three hours of waking up, my arms start to lose feeling. My legs are doing it now as well. Everything is still sensitive to a point but numb in a sedated, not pins and needles, way. My fingers, though – the fingertips – are the only things that seem to truly feel when this happens. Well, and just above my elbows on the back of my arms. My toes aside from the big ones are consistently non-feeling on each foot.
Even my throat is getting in on this numbing action. I feel most of the time like I need to yawn or throw up.
When my neck isn’t ‘numb’ it’s hurting.
Nothing I seem to do makes things better or worse. The way I see it, I can either do things and get slightly worsened symptoms or not do anything and still deal with the same stuff.
In the meantime, I’ll keep hoping this MRI holds the key to what’s been going on.
If it doesn’t, I know that I can keep working with this incredibly amazing neurologist to figure out what’s going on.

 

Review: The Fay Farms’ Rejuvenation Lotion

Posted on by Grayson
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Everyone knows I’m not a sucker for natural products. Having had a lot of that pushed on me as a child in lieu of treatment proven to work has given me some trepidation on all that stuff. Still, there is so much to be said for items that help us cope.

 

For me, the CBD oil containing lotions from The Fay Farm are some of the most helpful things I’ve ever found. I’ve already reviewed a few of the products they sell – their Healing Hemp lotion and their Serenity lotion which both have CBD oil. When the opportunity came up to review their Rejuvenation lotion, I was ecstatic.

This lotion is made with organic ingredients such as Purified water, hemp oil, grape seed oil, apricot kernel oil, emulsifying wax, stearic acid, argan oil, magnesium, white sesame oil, jojoba oil, essential oils, 200 mg. CBD oil, fennel, licorice, turmeric, valerian, gluconolactone and sodium benzoate (certified organic preservative).

 

It smells fantastic. It seems to be appreciated around the house by guinea pig or human more than even the other Fay Farm lotions I have. The mixture of different oils and ingredients make this a unique smelling lotion that just cannot be recreated from any other store-bought stuff. It’s a gentle smell that I can handle even during the worst migraines. It also smells a heck of a lot better than any other thing I’ve ever put on a sunburn.

 

Oh yeah, the sunburn thing.

 

You might recall that, back at the beginning of February, I took a friendship trip to Mexico with my best friend from college. It was very lovely and full of me making decisions that didn’t necessarily keep my health in mind, like not doing enough sunscreen.

 

 

I got one of the worst sunburns I have ever had. When I got home, all I could do was sleep on the couch, wear a blanket, and lotion lotion lotion every five minutes.

 

When I pulled out my Rejuvenation lotion, I figured that this would sting my sunburn and that I would still have to apply the lotion really frequently.

 

I was so happy to be wrong! 

 

It wasn’t like using aloe vera gel where I stick to everything for days and it definitely wasn’t like greasy lotions that make me slip on the bathroom floor.

 

Rejuvenation is soft and gentle on even the most painful – and scarred – sunburned skin. It also absorbs really quickly into the skin and does an amazing job actually bringing moisture to the area.

 

This lotion saved my skin.

 

 

I’m really tan for me, especially in March in Wisconsin. I don’t have any scarring or scabbing leftover from my sunburn which, six weeks later, is usually somewhat common for me given the severity of this burn.

 

The only reason that my skin healed up as quickly and as nicely as it has is this lotion. Instead of scars, I have these gorgeous freckles like I used to have all over when I was younger.

 

Rejuvenation is definitely a part of my warm weather survival kit. Want to add it to yours? You can snag this in 2 oz or 8 oz.

 

You can visit Project CBD’s Beginner’s Guide to learn more about CBD.

 

 

Now We Play the Waiting Game

Posted on by Grayson
I had acupuncture bright and early at 8:30 this morning. I had to bring up the symptoms I’ve been having lately. My pain rehab doctor said he thinks this sounds nerve-related and we got to the needles in my back bit.
After stopping and getting labs done for my rheumatologist, I called her office and left a message to have someone call me back. I rely heavily on my rheumy because, as great as my primary care doc is, she is extremely busy and can’t usually see me on an emergency basis like my rheumy can.
When her nurse called back, I explained what’s going on. She practiced great reflective listening and said she was concerned about my cervical spine.
I am, too.
I then explained my familial history of MS and she knew exactly where my mind was going.
Neither of us were happy. She said she’d talk with the rheumy and call me back. The nearly-four-hour wait was really hard to sit through – so much so that I slept for part of it. The nurse actually woke me up when she called, but I was more than happy for that.
“Let’s start with X-rays.”
I popped to the clinic near my apartment and got the highest number of X-rays done on my neck that I’ve ever had.
My biggest wish right now is that the X-rays show something, some hint of something at least. I don’t want this to be an issue of my disease affecting my neck, but I’ll take that over MS because of my history of watching that take a life before the breakthroughs made in the last twenty years.
Now we play the waiting game.
 
This is an update kinda to the last post.

 

I Spent Rare Disease Day on the Couch

Posted on by Grayson
I had to sleep on the couch last night. I’ve spent 99% of my day on the couch, too.
I hate doing that.
My pain the last few days has been higher than I’ve wanted to admit, even to myself. Today, this pain sits in my left knee and hip. I wanted to run errands and clean and do enough today that our apartment wouldn’t feel so cluttered.
On Sunday, some of my newer or more newly-worrying symptoms returned.
Since the summer of 2012, I’ve had a symptom off and on that I never was really concerned about until now. It’s what I describe as a whooshing of sleepiness down my arms from my neck. I say sleepiness as it’s not exactly numbness (though it’s similar) and I get very tired when this happens.
The first time I can remember this happening was at a museum. Hubs and I were walking around looking at collections and I got overheated, very lightheaded, and had this arm-whooshing.
I nearly passed out.
Understandably, I decided it was probably a fibromyalgia thing — something I would be diagnosed with a few months later after breaking down in front of a previous rheumatologist’s nurse practitioner. I knew I had either fibro or multiple sclerosis. The latter led to my great grandmother’s death and I just couldn’t handle the not-knowing.
Between the arm-whooshing recently growing in intensity and newer symptoms — intense leg twitching, slight slurring of speech, etc — I’m not sure that MS is off the table.
The allodynia and other symptoms I have of fibro are things I always believed to be fibro-specific… but I recently learned they overlap more with MS than I ever knew.
I’m honestly very scared and devastated — scared because I know that I might have MS and devastated that my great grandma lived with so much of what I’m dealing with on a day-to-day basis.
She was always so supportive of my and my health issues. When I first got sick at age five, she was the most supportive person in my life. She tried to make me less afraid of the possibilities that systemic juvenile arthritis can bring, like wheelchair and scooter use. She relied on her scooter and tried to make it fun, racing it around our backyard. That part didn’t exactly stick for me, because I knew she hated being confined to it, but that’s okay. I was always around to help get things out of cabinets so we could cook together (as long as she let me stand on the counter tops).
I take so much of my personality from her, the good and the not-so-good. She was blunt, even to us kiddos, but always made sure that we knew we were so very much loved by her.
It isn’t the end of the world if I wind up having the same thing as her. I’m just scared because I watched it take her body and then her voice and mind. That gradual wasting away is what scares me… even though I know that medications and other treatments have come a long, long way since she passed in 1999.
Hubs and I have discussed it and we would handle this like any other diagnosis: taking it one day at a time.
Still, I’m scared.
Thursday morning, bright and early, I see my pain rehab doc. I have to tell him about this and see what else we can do, see how he and the rheumy want to evaluate these symptoms.
I’ll do labs and see if my inflammation levels are down at all, since they were high in January.
And I’ll wake up on Friday ready to head to Minneapolis for the weekend, hug some of my favorite people, eat some amazingly delicious Parkway Pizza, and watch some collegiate women’s hockey.
This post originally appeared on Medium. You can read an update in the next post.

 

Acupuncture saved my life

Posted on by Grayson
In the last half of 2016, I began seeing a pain rehabilitation doctor I was referred to by my rheumatologist. My neck has been just god awful for me lately.
For a long time, I hadn’t been sleeping in my bed but on the couch. Even then, I was barely sleeping.
We started with trigger point injections. This is where lidocaine (a numbing agent) is injected directly into very tight muscular points. It relieves the tightness and allows you to move in ways that will help work that knot out. These were really effective at the start, but began to very quickly lose effectiveness past the first few days.
Our plan b was to start acupuncture and see how that went. It isn’t covered by our insurance and y’all know how I feel about ‘alternative’ medicine things, but I was willing to give it a try.
 
I can honestly say right now that I don’t know if I would be alive without acupuncture.
People may think I’m being melodramatic in saying this but, for me, it’s a reality. I can deal with pain in a joint on a normal basis – heck, I lived and worked with bursitis for several months. This neck pain is something that is just demoralizing and awful in the worst way.
I can avoid using a joint like my knee but not my neck!
We’ve only done the acupuncture a few times, but this last time I went for three weeks until having real neck pain again this past Wednesday. And, when I say this, I mean little-to-no breakthrough pain to manage as well – no TENS unit, hot packs, ice, ointments (aside from those to ease my sunburn), etc.
This is practically a miracle for me.
I’ve been able to sleep! And in my bed next to my husband at that! Tuesday night was the first night since I got back from Mexico that I didn’t sleep in my bed once my sunburn cleared up enough.
All that said, this has been also a practice in self-care. For example, I can’t be upright all day. It’s just not something I can do and survive. That’s actually been part of what’s wound up causing me more pain this week.
The amount of time I’ve spent upright the last two days, though, has been productive and amazing. In addition to publicly speaking out again sexism and sexual harassment that pervades our patient communities, I’ve also been working on some great things for Chronic Sex and related projects. I won’t talk too much about it here, but it’ll advance a lot of research and information on sex/intimacy and illness/pain/disability.
I get acupuncture next week Thursday and I couldn’t be more excited.

 

Sometimes you just need a reset

Posted on by Grayson
The last few weeks have seen me having a lot of good days which I desperately needed.
It all started with a trip to Cancun, Mexico with my college roommate. It was a great way to take a break from social media and work. I mean, I did manage to get a horrible sunburn because we were drinking margaritas in the ocean, but that’s beside the point.
It’s hard to not rest and want to soak up as much sun as possible when you’re around this instead of frozen tundra Wisconsin life.
It was nice to get a sunburn honestly. It was a good reminder that pain usually comes to people after they do something.
Katy and I also just really needed to spend time together in the wake of all the political ick going on.
Despite having a sunburn when I got back, I really felt like I had a fire lit under my ass. For the first time in a while, I had really just taken a legit break and felt ready to attack things.
A week later, T and I got to go see one of my favorite bands – Boyz II Men!
I’ve been listening to them ever since I was little and I have always enjoyed their music. Seeing them in person was amazing.
It also got me thinking about other things from my youth that I really enjoyed… like albondigas soup… which all connects back to Mexico, funny enough. I talk about it in my latest piece over on Medium.
Hey, and I lost like five pounds within a month!
It’s not that things are all going right. My inflammation levels are high. My fatigue is being a butt. I have a million things I want to do and not always enough energy to do them.
Still, things feel better. Rest is incredibly important, especially in times of resistance. Make sure you’re taking care of you.