May: The Ultimate Awareness Month

Posted on by Grayson

May 1st marks the start of an awareness month practically tailor made for me – asthma & allergies, arthritis, mental health, and fibromyalgia.
My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal… which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.
My arthritis is steady. I’ve come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I’m reminded of my limitations – especially at night, when pain relief just won’t come. My hands, neck, hips, and knees are furious.
Mentally, I’m in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I’m doing. My PTSD is another story, but that’s alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother’s Day in it), I know this won’t be an easy time of year.
My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that’s a thing that’s started and is spreading. I’ll push through cause I have some errands to run, but I’ll be glad when I’m home and can get naked as quickly as possible. I wanted to shower today, but I don’t know that I’ll be able to – the water feels like daggers on allodynia-affected skin.
I always feel conflicted when people say things like “don’t let your disease define you.” My conditions all do – they’ve defined my life from a very young age. They’ve also given me a level of appreciation and compassion that isn’t always a thing for abled people. I’ve gotten to do amazing things, meet the best people, and enact some real change – things that I don’t know I’d be interested in if I was okay.

 

Off to Healthevoices 2017

Posted on by Grayson

I’m heading to Chicago for the weekend for HealtheVoices 2017!
Chicago is one of my favorite places, so I’m excited to spend some time there with some of my favorite health activists in the entire world. It will also be great to see many of my Joint Decisions friends for the first time since our October summit.
Since I’m at the end of my master’s capstone writing, I may not get a recap up as quickly as I did last year. Still, I’m excited to be able to share things I learn with everyone else via the interwebs.
PS: Janssen is paying my travel expenses for this conference. All thoughts and opinions expressed here or on social media are my own and do not reflect the thoughts or opinions of Janssen or Johnson & Johnson. 
 
And, yes, in case you were wondering, I will be binging on Do-Rite Donuts again.

 

How 23 And Me Helped Fill in the Blanks in My Ancestry

Posted on by Grayson

Growing up, I was always told I was Italian. Knowing what kinds of things I’ve been lied to about growing up, I decided I might as well try to figure that out for myself.
So, I snagged a 23 And Me kit and I’m not exactly Italian.
I knew that part of my ancestry on my mother’s side had a collection of the UK and France, but I was unaware of the Scandinavian connection – something that’s likely on my dad’s side. He didn’t know his own father and so knows little of the genetics of his side of the family.
Now I finally know more about my background without having to make guesses or rely on pesky ‘alternative facts’ I was raised on. I know what my background is and I can truly start investigating more about my family’s history, something I’ve wanted for my entire life.
I also apparently have a high number of Neanderthal variants (one of which is associated with my height). From a health standpoint, they did not find me having any carrier status of the conditions they tested, though they do not test all variants of these conditions.
I move a lot during my sleep and additionally get less deep sleep – something 23 And Me picked up on easily. And they did say that I was predisposed to weigh more.
So that’s fun.
The rest of what they tested or showed was stuff that is relevant to the present – what tastes I’m likely to prefer, eye color, freckles, etc. There are some things that weren’t exactly correct – they say I’m likely to have lighter hair or consume less caffeine, for example.
Why 23 And Me?
 
One of the things that drew me to 23 And Me over other ancestry tests was that there was the health component. There was another major reason I chose them, though – research.
They have done a lot of research on chronic illnesses from IBD to lupus and more. If and when they start to do research related to conditions I have, I’ll be able to provide them a ton of already-processed data.
If you’d like to try 23 And Me, click here to use my referral link.

 

Help Me, House – You’re My Only Hope

Posted on by Grayson

Since all my tests thus far have come back negative, I’ve been picking my own brain trying to figure out what in the hell I’m experiencing.
I have great doctors who are willing to help me figure out what’s going on, but it takes so much time and the not-knowing is almost worse than the knowing – at least with knowing comes plans and treatments and the like.
Up until now, I’ve felt very focused on a few differential diagnoses that I found and felt certain these matched. Tests so far have ruled these out (ish – none of these tests is 100% conclusive so there’s that).
It made me wish House, MD was real.
He would greet me and sit with me as we went over my family history, personal health history, and tests done so far. He’d made crude jokes that I’d laugh at because he’s handsome and – well, you get the picture.
Most of all, I wanted his team working on their whiteboard of symptoms, examining things and ruling things out simply by how I’m presenting.
It’s silly to be so dependent, at least in thought, on this fictional character. I mean, House doesn’t exist. This can’t ever happen… right?
Well… On Monday, I bought myself a whiteboard and began listing what I could on there.
The differential diagnoses list has grown in size, thanks to pals across social media offering their thoughts and ideas. Together, we’ve even found some that fit better than those listed here.
It’s also culminated in an ‘asks’ list for me to take back to my healthcare team, from easy stuff like additional blood work to more rigorous tests to even a full spinal MRI and spinal tap. I really would like it to not get to the spinal tap level.
This pain and weirdness is already at 11, know what I mean?
 
Do you have thoughts on what this could be? Here are some things I ask you to keep in mind:
These symptoms have been off and on since 2012, happening maybe three hours here (when overheated) and two hours there but not consistently like it happens at present. This rules out some things like guillain-barré syndrome that would’ve had me kick the bucket in five years’ time.
I have a familial history of autoimmune and autoinflammatory diseases.
My genetic makeup (courtesy of 23andme because of familiar record issues) is heavily European:
  • 58.1% British Isles (British, Scotish, Irish, Welsh)
  • 10% Scandanavian
  • 6.5% French and German
  • 23.8% Broadly Northwestern European
  • 1.4% Broadly European
  • 0.01% North African and Middle Eastern

 

I do not have Ashkenazi heritage which rules out a number of conditions.
There may be symptoms I am having that are not listed on the board as they overlap with other conditions I am currently diagnosed with (fibromyalgia, systemic JIA, etc). This is not a complete picture of my health.

 

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.