Tuesday, August 15, 2017

Latest MRI Results

a photo of a one lane road in the middle of a body of water; white text at bottom middle "Latest MRI Results" and "Not Standing Still's Disease"

In my last health update, I shared about how I had an MRI coming up on what was last Friday. In reality, it was two MRIs scheduled back to back (HA!) - one of my thoracic spine and one of my lumbar spine. 

The MRI team was great. We talked about tacos, guinea pigs, and fun things to do in the area. More than that, they were incredibly caring and very helpful.

I took a Valium before the MRI and it worked much better than the last time. I was incredibly groggy and wound up sleeping for a good amount of the time I was in the machine. To be honest, I don't even remember how much of the time I was awake.

That was perfect - exactly what I needed since my head got to be in the most narrow, coffin-like part of the machine for nearly the whole time.

T and I went out for tacos at our favorite local place, and then I came home and slept for a few hours, waking up incredibly alert and ready to do things. In the middle of writing my last paper for my masters, I got an email about my test results.

My thoracic spine MRI came back completely fine. This part of the spine, for those unfamiliar, is between the neck and the lower back. My lumbar spine, though, did not.

"At L5-S1, mild broad-based disc bulge results in mild to moderate foraminal narrowing on the left."

Yeah, I had to look that up too, but I knew it wasn't great. The note said that these were 'degenerative' changes, though knowing my body this may not be entirely true. The short story is that I have a bulging disc, causing stenosis that is smooshing some nerves.

Now, the note from the radiologist in my test results says this isn't causing my symptoms. After doing my own research, I feel like this could be, though. Everything I've found discusses how back spasms can be a part of this - something I've had since 2012-ish but was told this was due to scoliosis that my physical therapist at the time and I found on my X-rays.

Anyway, the symptoms can include pain (duh), muscle weakness, pain along nerve paths, pins and needles or hot feelings, numbness and tingling in the extremities, and more.

The symptoms that worried my neurologist as I explained them were bowel and bladder incontinence that came up during my last big neurological thing. It's important to note, though, that having IBS can explain that in conjunction with all this. Think about it - muscle weakness and an already-upsettable GI tract?

My back pain is becoming more prominent. I think part of it is because I know this isn't something to dismiss as I was told to when it was 'just' scoliosis-related pain. Thinking back, the summer of 2012 is the first time I also had some of the neurological symptoms I've complained of recently, including issues with temperature regulation.

It could certainly be coincidence, but I don't know. We shall see. I haven't heard directly from my neurologist's office. I suspect I will sometime this week, though. If not, I know that my EMG coming up on the 30th is with him so we can talk more about things then. 

Monday, August 14, 2017

Review: THYNC Relax Pro #THYNCrelax

a photo of the THYNC box (black rectangular box with a white slash in the middle) against a light blue sheet; photo has been darkened and colors other than B&W aren't distinguishable; black text at top middle "Not Standing Still's Disease" and at bottom middle "Review: THYNC Relax Pro"

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.

When I got the chance to try the THYNC Relax Pro, I nearly jumped for joy! I had been looking at it already and was very interested in giving it a try. It's tricky to make things work when you're not working more than freelancing, though.

Earlier this year, I learned about how the FDA doesn't really regulate medical devices. It's a scary thing to think about. The nice part about THYNC is that they've done studies themselves. In fact, this device has undergone testing over the last FIVE YEARS. Throughout that time, it's been proven to be both safe and effective. 

All the testing makes sense when you learn that neuroscientists from universities like MIT, Stanford, and Harvard created THYNC. Check out some of the positive press they've gotten:
How does THYNC work?

THYNC box opened against a light blue sheet; cover is black with a white slash in the middle; next level has a white manual and the golden kinda-triangular THYNC device; bottom level has a soft carrying case packets with the gel pads for use

THYNC comes with the kinda-triangular THYNC device itself, this nifty connector that clicks into the device, and gel pads that go between the connector and your skin. Once you put it all together, it looks like this:

two pics together; on the left, the front of the device with a black tab coming out from the bottom attached to a gel pad, and you can also see my 'believe' tattoo with the L replaced with a blue awareness ribbon; on the right, the back of the device showing the connector attached to the THYNC and both gel pads; in both pics, I'm holding the device and the background is a royal blue Doctor Who Tardis fleece blanket

You then open up the app, make sure the two connect via Bluetooth, and select your mode. There are two modes - deep relax and deep sleep. 

Deep Relax

This mode should be used for at least 10 minutes at a time. It's great to use once daily or whenever you're feeling stressed. This is a very light vibration.

Deep Sleep

This mode should be used for at least 15 minutes at a time as you're nearing bedtime. When you start to get sleepy, take it off. This vibration feels a little harder to me, though that could be because of my personal adjustment needs.

Regardless of mode, the app keeps track and will provide you with trivia on stress and sleeping habits.

What's the verdict?

Remember as you read this that your mileage may vary. My body isn't your body, and my experiences may not be yours.

The bad:

I have a bit of a prominent neck hump from my health crud and years of not having a real bed. Because of that, it wasn't always easy to get the pads to stick well without asking for help. You should hold still when using the device, but also not be laying down, so that can be tricky as well. I have to stretch every few minutes or my neck and shoulders freeze up.

It isn't always as easy to use as I'd like, especially knowing that it doesn't always stay on my neck as easily as it might for others. When flying the other day, I wanted to pop this on. However, I was aware that, if I fell asleep using it or just moved the wrong way, I might lose the device. Again, this could be a just me kinda thing, but it's something to keep in mind if you have a neck hump as well.

There are times when the vibration is a little too much if my fibromyalgia is acting up, simply because it is a vibration-based tool.

If you close out of the app, you can't just go back into it to control the device again. You have to turn off the device and restart it. In fact, everything with the device's power is manual, which can be tricky with a small on/off button. I hope that future versions will have the ability to start the device from the app so that it's more accessible for those of us with hand dexterity issues.

Really, these are just things that need some tweaking - or things that would be helpful to know as you get started.

The meh:

I don't know that the sleep mode really helped with my sleep at all. My sleep tends to be sporadic and I usually wake up in pain several times during the night. This didn't change at all with using the THYNC, nor did I sleep longer in general after using it.

The good:

The relax mode is wonderful. I feel more relaxed and definitely more present. I suppose that's made easier by the reminder that this is what I'm doing right now, trying to relax. It has an added benefit that the vibrations also help my neck pain somewhat (as long as I have the settings right) which definitely helps with relaxation.

I breathe more deeply and focus more intently on the things I want to do.

Overall, I'm really enjoying using the THYNC Relax Pro. I think next I'll pair it with some of my favorite meditations from Buddhify and see what happens. We all know I need to relax more, so it can't hurt!

Want to snag one of these for yourself?

Visit THYNC's website! It's currently $49 for a 30-day trial. Note that you have to use an app with this which is currently available on Android/Google and Apple devices.

Monday, August 7, 2017

5 Ways to Avoid Getting Regular People Sick with a Chronic Illness

A few years ago, I was on some treatments that resulted in my picking up nearly every sickness going around. Of course, that means I've also turned those illnesses from regular-people-sick to antibiotic-needing-sick. In the last few years, though, I've made some changes and now the only thing I tend to get are colds! 


Today, I'm sharing some of my tips. 

1. Hand sanitizer

I have been traveling a good amount. When I do, hand sanitizer is a major go-to. 

I don't do well with washing my hands in a lot of public places. Don't get it twisted - I wash my hands. The problem is that I have temperature sensitivity. If I can't control the temperature of the water, my hands have some major problems. The same if there is only a dryer instead of paper towels.

I like saving the earth. I get why many places have dryers only. The problem is that this isn't accessible and then I pay for doing what I should and washing my hands.

Solution: hand sanitizer. 

It definitely helps when you're touching parking ramp door handles, taking public transportation, and tons more in public too.

2. Medical masks

Now, I don't always follow my own advice on this one, but I try to use medical masks when I fly for just that reason - especially during cold and flu season.

Let's be honest - we'd all hope someone super sick wouldn't be on a plane BUT flights are incredibly expensive. If I'm not well, I certainly can't afford to miss a flight. Even rescheduling is hard, especially if you're traveling for business reasons. It's silly to hold others to higher standards than we hold ourselves.

There are tons of medical masks out there. Vogmask is one company that people just love with cute designs that make it feel less... medical.

3. Get your shots

Get your shots to protect against the flu, pneumonia, etc. Make sure that you stay on top of these. I haven't gotten the flu once in a few years since I started getting immunized - despite working at a university and being in a clinic all the time.

4. Get some rest

One of the easiest ways to get sick is to avoid taking care of yourself. Stress plus hygiene issues plus chronic illness fun? It's a recipe for disaster.

Go practice some self-care. Unwind. Relax.

Visit this Pinterest board for some self-love and self-care ideas.

5. Don't share

If you commonly share things with loved ones (especially kids), it's always a good idea to limit that when there are sicknesses going around. It's not easy, I know, but it's a good thing to get out of the habit of doing.

What are some of your tips for not getting 'regular people' sick?

Wednesday, August 2, 2017

Health Update: Yet Another MRI

blue-ish pic of a window with raindrops on it and the moon is seen through it; white text: "Health Update: Yet Another MRI" middle and "Not Standing Still's Disease" bottom

Back in March, I had seen a neurologist in one health system. The entire department left and I got a referral to the department in the other system. Unfortunately, my initial appointment wasn't scheduled until the end of August.

I woke up Monday morning at 8 am to a call from neurology, though, to offer me an appointment at 8:30. I got up, took meds while on the phone, and sped over to the clinic. My primary doctor only referred me for my migraines, leaving out the weird neurological stuff I've been dealing with all year.

I made sure to share what was going on, though, on the off chance he would be as concerned as I was. And it paid off.

We honestly didn't talk very much about my migraines. I wish we had a treatment plan there, but I also understand that my symptoms would be more alarming. Doc ordered an EMG to test my nerves for the end of August. I also have another MRI on the 11th to check the rest of my spine.

I didn't even need to bring it up, but doc was upset that this hadn't been done before. He might've been more worried than I was, which was a nice change. Various illnesses and nerve problems can be found further down the spine and not always sit in the head and neck... including MS which keeps popping up as a potential.

We will see what the MRI shows and go from there. Since the EMG is done by the neurologist himself, that will be a follow-up appointment with him and I can bring up a treatment plan for the migraines.

These are all tests I asked my previous neurologist for before he left, and there just wasn't time or he didn't think these were necessary. It was so validating to have someone new share my concerns without me even having to state them. I'm really grateful that I was able to get in early and get things moving more towards a differential diagnosis.

For now, though, I'm off to D.C. to present on chronic pain and sex!

Thursday, July 20, 2017

Scary Movies Help My PTSD

a photo of a white femme in a white dress with tattoos on her arm holding an ax; a blue old timey overlay with black text: "Scary Movies Help My PTSD"

Triggers discussed in this post include abuse, neglect, animal abuse, and death. If you need to avoid these triggers, please scroll down to the next picture.

Growing up with abuse & neglect has long lasting effects, including horrible fucking nightmares. Waking up in PTSD mode fearing an abuser and wanting to protect my babies is not something I'd recommend. Ever.

I woke up from a nightmare this morning. While mostly based in fiction, it was very real and rooted in a lot of real abuse I went through.

I was living with Mother again. They told me one of the piggies was dead. In reality, they moved him to the basement & were starving him in a clear tote. I yelled and screamed at them, crying and holding him. I took him and we went to the pet store and got things he needed - and then I moved all pets into my room and locked us in.

It reminds me of how she would adopt animals, make me their keeper, and brag about what a good person she was to take them in when she did almost nothing for them. I mean, fuck, she made me dissect one of my hamsters 'for science' after Teddy died from cancer. No, let's not take Teddy to the vet and be humane, but watch her endure horrible pain as a tumor grows and impedes her ability to function and then kills her. Let's not have a kind little moment for Teddy, but cut her open to 'explore' what cancer looks like.

I can still see, hear, and smell it all. I cried the whole time but she made me go through with it. I held Teddy afterward for as long as I could, crying and apologizing for everything before she made me just toss Teddy in the trash.

There are so many similar stories in my past - Mother forcing me to do things I would never do, letting pets 'go' outside instead of rehoming them once she got tired of them, etc. There's the hypocrisy, too, of donating to organizations to save some animals while you neglect, abuse, and abandon others.

If nothing else so far has told you what an evil person Mother is, I think that can highlight it pretty fucking well. There has to be a special place in hell for abusers like this. I wish I believed in comeuppance happening, but I doubt it.

It's so bad I didn't want to get up and take my meds cause the piggies would be out of my sight for a few minutes. I finally did so, but only because my pain was overriding the fear and hypervigilance that comes with PTSD.

Jaq was the piggie in question, probably cause he recently had an infection so I've been extra worried about him anyway. He was very patient with me needing snuggles this morning, as was Gussy. I'm just grateful they know when something is wrong and when I need extra love.

photo of a red wine bottle lying down on a table with the neck facing the camera
It's too bad drinking gives me migraines lately cause fuck
It's really hard to come down from all that.

One of the trickiest things is that I simply can't stop everything I need to do because of PTSD. It's certainly easier to practice self-care now that I work for myself, but still. 

I know this was a nightmare. I know it wasn't real. It felt very real, though, and was related to such gross things I've experienced. Coping afterward is hard, partially because I don't know how to put into words what has happened.

My reaction, once I was able to calm down just a little bit, was to put on a scary movie.

I tend to watch scary things often. I never really caught on before to why that may be, but I think it helps my PTSD.

It's no secret that I've always liked scary movies. I watched Child's Play and Tales From the Crypt as a child - they were some of my favorites.

Now that I'm analyzing it, I wonder if part of my interest in scary things is because it's almost like a return to normal. I haven't been chased by a murderous doll or anything like that, but certainly feel at home in the fear that others avoid in avoiding these things.

In peeps with PTSD like me, our brains are kind of always set to 'on.' We're prepared to face anything because of what we've been through. There are significant changes in the brain, for example. The hippocampus, which helps with memory retention, is smaller in size than in people without the condition. This also means it can't help control how we access the memories, which helps cause flashbacks.

The amygdala controls our fear, stress, and emotions. Thanks to PTSD, that area becomes hyperactive and even enlarged. Combined with how the condition affects the prefrontal cortex, This means my emotional responses to things aren't always what they should be. Most importantly, though, my brain is constantly in a state of fear or stress. It's part of why I think I do really well with high-pressure deadline type situations, for example. 

Basically, PTSD is a giant gateway to living in fear and stress - much like the situations that have caused the condition in the first place. It also keeps me in a state of hypervigilance. 

I've mentioned that word a bit, but basically what it means is I'm ready for action. I'm ready to defend myself or fight for someone else or punch an attacker, etc. It's like having a ton of potential energy, but only for defense.

I think this is part of why I like scary movies though. 

T avoids scary movies. He doesn't like the jumps or gore or any of it. For me, though, anticipating those things helps to utilize my PTSD in a positive way. That doesn't guarantee that I won't face an issue after watching horror movies all day, but my mind is more focused on the puzzle aspect than the scary one if that makes sense. It's more about how horror theory will play out or what scares are used or the plot line.

From an emotional side, though, it also uses my fear reactions for some sort of enjoyment. I do so much better after watching scary movies or shows than I do even in therapy. The fear gets out through the emotions we feel as we watch these things.

It's a weird therapeutic use of horror, but it works for me.

Wednesday, July 19, 2017

Cure Evangelism and Crummy Medical Advice

photo of people's legs as they stand in line for coffee; the upper corners have orange on them diagonally and the bottom has an orange line across it; in the middle of the pic in bold white middle-aligned text: "Cure Evangelism and Crummy Medical Advice"

I really love being on Twitter. It's been the easiest way to find my people - usually disability rights peeps who are also a part of the LGBTQIA+ community.

Sometimes it can really suck butts, though.

Many people don't understand how they have privilege despite being a part of a marginalized group. The lack of tone in text can confuse people, especially when trying to decide if someone is being hostile or merely assertive. There are the trolls who treat people awfully simply because they can, too.

The worst people, in my opinion, are those who mean well but cause harm anyway. As a society, having conversations about intent versus impact can be helpful here. 

A subset of this group practices what is called Cure Evangelism, or giving unsolicited and unwanted medical advice.

Lately, those of us who do disability justice or illness awareness work have been bombarded by tweets or messages or even emails trying to sell us snake oil, tell us how to 'heal' ourselves, or similar things. This often happens after something we've said about ableism or health goes somewhat viral because we're not allowed to have nice things.

Well, that and arrogance masking itself as sympathy. I mean, I have a team of nearly a dozen doctors working with me - some of the top doctors in the United States - and y'all think eating more yogurt is going to do the trick.

dark starry background with the white text "how about NO"

Anyway, here are some ableist gems:
  • "Who gave disabled people access to the internet?" (literal quote)
  • "I'm gonna fake being disabled and start a gofundme" (literal quote)
  • "Get fucking cancer" (literal quote)
  • "You're too young to be disabled"
  • "Disabled people are nature's way of thinning the herd"
  • "You're not disabled - you're differently abled/special needs!"

And the Cure Evanglist kinds:
  • "Literally every single body can process plants. You need to go vegan like me and you'll be cured."
  • "Veganism is accessible and cures a lot - you just need to try it!"
  • "No one actually needs to be gluten free - it's all a trend and probably making you worse"
  • "My [weirdly related person] had that and they ate two raisins and now they're fine"
  • "If you just did yoga more..."
  • "Your medicine is what is causing you to be sick - stop relying on Big Pharma!"
  • "If you stop relying on your wheelchair, you'll be able to walk."
  • "You're never going to get better being so negative all the time"
  • "You just need to focus on the positive - I mean, you're alive, right??"

I could go on and on. I've seen so much - and then the responses once we stand up for ourselves bring in racism, sexism, and other forms of bigotry, too, reminding us that discrimination relies on discrimination.

What are some pieces of bad 'advice' you've gotten?

Monday, July 17, 2017

Upcoming: SJIA Family Education Day at Cincinnati Children's Clinic Saturday, July 22nd

I was hoping to head out to Cincinnati at the end of this week for an amazing event. Because of some health stuff, I'm having to stick at home... which sucks because this event is SO important.

The SJIA Foundation was started by parents of an SJIA patient to work on improving information, education, and care for SJIA/Still's patients.

On Saturday, July 22, they have an awesome event that brings together parents, adult patients, providers, and more to discuss and learn more about SJIA and other autoinflammatory conditions.

Make sure to check out the schedule, featuring awesome presentations from some of the coolest SJIA parents AND doctors (including Dr. Alexei Grom!).

Sunday, July 16, 2017

WEGO Health Activist Awards: I'm Nominated

purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'not standing still's disease' in white text

I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards - Best Kept Secret, Patient Leader Hero, Best in Show: Blog, and Advocating for Another.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities - but often do so without recognition.

I'll be honest - I'm not sure who y'all are who nominated me, but you're beautiful. It's been a rough couple of years and I'm not always sure anyone is listening, watching, or paying attention to the work I'm doing. Don't get me wrong - I'm not doing it for accolades, but it's nice to get a pat on the back once in a while at the very least.

purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It's a big deal and would be a great thing for any of us to be able to attend. If you'd like more information about the summit, you can learn more here.

I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badges located to your right on the sidebar 

2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo

If I have ever supported you, made you laugh, or inspired you to keep fighting - please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

Wednesday, July 12, 2017

Check Yourself Before You Wreck Yourself

'check yourself before you wreck yourself' in yellow; 'not standing still's disease' in white below that; set against a blue filter over a photo of my feet in black flip flops against a brown clinic floor

I saw the rheumy today as planned. I was a little concerned that she would chastise me for not adhering to a Mediterranean diet.

To be honest, I was more concerned that she would be upset that I wasn't really eating due to a lack of appetite, but I forget how awesome she is sometimes.

"It's okay to just snack. Who says you need full meals all day? Just get something in there."

That eased a lot of concern I had around my diet stuff. We talked about my shoulder, too, and how I need to let her know if it's still bad by the end of the month. She'll plan on injecting it to help stop it from going full frozen shoulder again.

Otherwise, I don't have to see her again until January... though, knowing my body, I'll need a more urgent visit sometime in the fall at the very least.

me in a reddish-purpleish shirt in front of a brown clinic wall with boring art behind me; a snapchat filter has turned me into a unicorn with a white horn, white ears, and white glasses, as well as adding a bit of rainbow to various parts of the photo

I've had a really busy schedule this week - so busy that I've been ignoring pals to do self-care. It makes me feel rotten, but I also needed to do it. I had a boudoir shoot yesterday (which was SO FUN!) and, while prepping for that, found a scary mole change on my pubis.

While I talk about this kind of stuff more at Chronic Sex, it's worth mentioning here, too - check things checked out.

I've always had a mole there. Hell, when I had chicken pox, one grew under the mole! I honestly thought it was a cute thing - until I looked down while grooming and saw that the pinprick mole had turned into something the size of the end of my pinky.

*Cue internal screaming from a sexuality educator*

I decided that it would be good to call my primary care doc's office to see when I could get in. There's usually a fairly long wait and, while this didn't hurt, I wanted to try to get there as soon as I could. It turned out that she had a midday appointment today so I made my way from one appointment to another.

It turns out that I have Seborrheic Keratosis, which is just a fancy term for a benign (but scary-looking-to-newbies) skin growth. It can itch and get waxy feeling, so I have to be careful not to scratch it off!

While I was there, I brought up some pelvic pain that's woken me up in the middle of the night. The pain is intense and often feels similar to the spasms I get in my back, but they're in my bladder or somewhere in my reproductive system. 

Right now, the thought is this is indeed bladder spasms, but we want to make sure there are no other issues going on. We did an impromptu pelvic exam today as well as tests for a variety of things - sexually transmitted infections, bacterial growth, etc. I also go for a transvaginal ultrasound on the 24th to rule out any growths or cancer within my business.

It feels weird to be a sexuality educator with 'pelvic pain' listed as a health issue in her chart. That said, I'm glad I brought this up today. It's been an off-and-on thing for a while and, combined with the skin thing, was enough to scare me at the very least.

Get yourself checked out anytime you think something isn't right. I would never have known my giant mark was Seborrheic Keratosis otherwise. Like the article I linked to above states, it's scary for people to see this randomly and is often mistaken for a cancerous growth.

Friday, June 23, 2017

The Fight Ableism Prayer

Sometimes I get really tired in my fight against ableism. 

It's hard especially when our government makes it clear they don't care whether we live or die. One of the biggest ways they show this isn't just with the AHCA, but with how we are treated when we try to stand up for ourselves.

In the fight against bigotry, we may lose sight of why this matters and why we need to fight for ourselves and our future. People without chronic conditions or disabilities generally aren't prepared to hear about the issues we face, especially because equality can feel like discrimination when you have privilege.

I developed the prayer below based on the Lord's Prayer to help reinforce my inner strength to fight the ableds. I hope it helps you, too.

O, universe, all around us,
Help me fight the ableds.
Help them to listen more than they talk.
Let them learn how to be allies,
instead of harming, assuming, and speaking for us. 
Give us this day our daily meds, physical therapy, and grounding exercises.
Help oppressors understand our tone,
As we don't tone police ableds and other perpetrators of oppression. 
Lead us not towards ableism and harm in our communities,
But help us identify the -isms and -misias therein. 
Disability is a naturally occurring state.
The future will be accessible.
Nothing about us without us.

Monday, June 12, 2017

Mental Health and Chronic Pain in Childhood

Before I start this post, let me mention a few things - there's a lot of talk of dying early, suicide, abuse, etc, in this post. I am fine - simply describing much of how growing up with chronic pain conditions can be and, indeed, was for me.

One of the things that I've struggled with, starting as a child all the way up to today, is the combination of chronic pain and death. Indeed, it's one of the big issues in the chronic illness world - we often fail to address how mental health can play with chronic illness and pain. 

About a year ago, I came across the Tumblr post below:

Tumblr post from user Bakrua (black text on a white background): Being mentally ill + suicidal at a young age (before 18) is. strange, because you grow up with this idea that one day you'll finally snap, turn off, be brave enough to kill yourself, so you don't really plan-for the future. adulthood - further life, it isn't for you, nor do you feel included within the future of it. it isn't.. it isn't part of your life plan" new paragraph: "and then before you know it you're 18 and you're an adult but you never thought you'd get this far and sure it's great that you're still alive you guess but also. you feel so alone + lost in a world you never expected or planned to be a part of."

It really hit home for me.

When I was young and we didn't know what was going on with me, I made my peace. I was sure that I was going to die soon and I was somehow less scared of it than I am now. 

I think I was also more at peace with the idea that I was in no way in control of my destiny. I certainly wasn't a godly child but understood more about how my physical body is more in control than my brain. Obviously, I would have been sad about passing away so young. I would've missed all the time I've gotten to spend with my sister, the people I've come to know, and all the animals I've loved and taken care of.

Since I was so prepared to die early, I didn't really plan for later in life. Even after the SJIA diagnosis, - I knew that this was a scary disease from what I had read as a seven-year-old with a dictionary beside me. Hell, I figured that if my SJIA didn't get me that my abusive mother somehow would. She certainly was good at pushing buttons to help people make decisions that weren't the best for their health. But that's a story for a different time.

I knew that other people didn't deal with exactly what I did. Still, I felt as though I was handling this very poorly compared to how others might. It's a very common thing for kids with chronic pain to think. A few years ago, I read a book that discussed fibromyalgia in children and nearly every kid expressed being 'bad' at handling pain they thought everyone dealt with.

It's one of those initial ways we experience ableism - we think we do poorly at handling issues.

In reality, just like with people of any age, children are just trying to make sense of what's going on in their bodies and their lives. We can't control what's happening to us in a lot of ways, both because of our ages and our illnesses. Many adults don't take what we say seriously, either, which can further issues like depression - especially if we're isolated and abused in our youth as I was.

Now I'm nearing 30 and I have no idea what I'm doing. Sure, some say that's what being an adult is like, but not in the way I feel it. I have few plans because I just never thought I'd get to be this old. Because of T's struggles with depression, he's in the same boat. It's not easy for either of us - and can cause issues within our relationship.

See, the way I grew up affects everything in my life - how I handle my health fun, how I treat others, relationships, etc.

If you have a child who deals with chronic illness, it's imperative that they begin to see a therapist to work out their feelings. They need validation outside of the family as well as a safe space to vent. They also are going to need a lot more help than any parents, no matter how awesome, can give them. A therapist can be a wonderful person for further mental health referrals.

If you live with chronic illness, whether diagnosed in your childhood or later in life, please see a therapist or other mental health professional. It can mean the difference between life and death.

Tuesday, June 6, 2017

Review: Liberty Lixir 1000 mg CBD Tincture

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.

Today I'll be reviewing the Liberty Lixir Ultra 1000 mg tincture from Liberty Lotion.

This tincture is an isolate which means that it's gone through a very rigorous process to remove anything other than CBD from the oil. Like with just about every CBD-only product, there is no THC in this.

According to the Liberty Lotion website, each pump from the bottle gives you close to 7 mg of CBD oil - 6.7 mg to be exact. They talk about how the most effective dosage is different for everyone but mention that around 3-5 pumps every 4-6 hours seem to be about the average.

What you do is pump the oil under your tongue and wait as long as you can for it to absorb. In addition to CBD oil, this contains Vitamin E and coconut oil. I don't really like the taste of coconut oil, so I'm not always able to wait the recommended ~60 seconds. It also means I don't necessarily love to swallow the remainder of the oil that doesn't absorb.

I remedied this by following up the oil with a non-water beverage. The oil you swallow has to travel through your GI tract anyway and it likely won't give too much benefit... so I'm not worried about following it with soda or anything else really. 

Okay, with all that out of the way... how did this work?

Generally, when I'm dealing with a fibromyalgia flare-up like I have recently, I can't even wear clothing. I sit in a fleece blanket on our soft couch and try to make it through the day. I'm lucky if I can shower maybe once a week, depending on how long this flare-up goes. Everything hurts from head hair to pubic hair to anything touching my skin. I'm unable to sleep so I'm up at all kinds of weird hours instead of sleeping in bed with my husband.

I really freaking hate not sleeping by T when we're both home. It's something that is so out of my control and something that my diseases dictate. I always worry about resentment or loneliness. For a while, I just couldn't even try to sleep in our old bed. I would come in and read him a story or listen to a podcast and then head back to the couch once he was asleep.

After starting this tincture, though, I don't want to go anywhere without it.

I have slept in my bed next to T every single night. I'm crying writing this because it's been a long time since I made it through a week sleeping in our bed.

The fact that I've been able to sleep at all has contributed to this flare being less severe than those I usually experience. 

On top of that, though, I'm being able to go do things. Maybe wearing clothes still isn't the most comfortable, depending on the dose I've used, but I'm able to do it instead of breaking down in pain and crying. I've been able to keep lunch dates with friends and plan others because I have some semblance of a life back.

CBD, in general, is something that I love, but I have not ever tried something that impacted my life as much as Liberty Lixir.

I mean, I'm crying writing this right now. I have control over more of my life than I've had for years. It's no surprise that this, then, is pretty much my favorite product I've ever tried - EVER.

Oh, and did I mention they also have a reward system? There are so many things you can do to earn rewards, too!

You can redeem 500 points for $10 off, 1000 for $25, and 2500 for $75.

I've already ordered a few of their topical products and am super excited to try them out soon! I'll definitely report back.

Want to snag something from Liberty Lotion for yourself? If you use code 'NSSD' you can save 10% off your order at Liberty Lotion!

Make sure to check out Project CBD's Beginner's Guide to CBD.

Tuesday, May 30, 2017

Review: Premier Biomedical CBD Patch

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.

Today I am reviewing a CBD pain patch from Premier Biomedical Pain Management Solutions.

In addition to CBD oil (which, for this product, is derived from hemp), the patch includes coconut oil, lecithin, aloe vera, almond oil, shea butter, and various extracts or essential oils.

The patch is latex-free which my skin appreciated! It is similar in look to a band-aid, with the actual CBD contained in a reservoir where the cottony part of the band-aid would be. The reservoir contains 48 mg of CBD oil that gets released over a longer period of time - up to 96 hours!

Via Premier Biomedical
The corners of the patch are rounded which I appreciated a lot. It made it a lot less likely to catch on my clothing or try to pull off in my sleep. It was also water resistant so I was able to shower with it on!

The first thing I noticed when opening up the pouch was the smell. It was pleasantly floral, but not too much so - probably from the eucalyptus, sage, and citrus oils. The next thing was how the CBD oil was reddish in color because of the red palm oil used.

I was really excited about trying this out. I use CBD oil a lot in lotions, so this was a good next step for me. I had a fibromyalgia flare-up and thought it would be a good time to try the patch out... That may not have been the best idea, simply because I generally don't handle things on my skin well when I'm flaring. 

That was my own fault.

Since my left shoulder and neck are my worst spots right now - and you should place the patch as close to the source of the pain as possible - I had T put this on a trigger point about halfway between the two.

My fibromyalgia pain was untouched. It hardly responds to much and, again, I should've picked a better time to try this patch.

That said, my neck and shoulder pain has been fairly constant over the last 13+ months. Wearing the patch over the span of a few days, though, has really helped clear it up. Even now, a few days later, the pain isn't nearly as bad. It also isn't as constant. It isn't here when I wake up.

It's so weird - good weird, obviously!

We've tried a lot for this pain - other patches, gels, heat, ice, massage, trigger point injections, acupuncture. Nothing has worked as well as this patch has. Acupuncture is the only thing that comes close, and that isn't necessarily very comfortable.

The other thing is my acupuncture isn't covered by insurance. That means we have to pay over $80 a visit for me to get that. This patch is only $20. Four patches with shipping and I'm saving a bit of money and getting better pain relief.

I definitely recommend this patch, especially because I've been able to be so much more active lately as a result.

Interested in snagging your own? Head over to Premier Biomedical!

Make sure to check out Project CBD's Beginner's Guide to CBD.

Saturday, May 27, 2017


T is away for the weekend, which means I'm working on getting a lot of things done around the house. It was already my plan but definitely became a necessity after the fibro flare I was dealing with earlier this month.

I've been behind on so much from cleaning to putting things away and more. It's really hard to do those kinds of things if your body doesn't want to even wear clothes, ya know?

I've been keeping some of my cleaning plans under wraps - AKA not telling T everything I plan to accomplish - because I don't know if I'll be able to do it all. If I don't share those things, maybe I won't feel as guilty if I don't accomplish them.

One of the big things on the list was to pay the $650+ in medical bills I had sitting around.

[gradient photo from yellow (top) to purple (bottom) of me with the back of my hand to my mouth and looking away from the camera]

So many of those bills are from trying to figure out what these new symptoms are from. It stings to have to pay over $400 alone for my MRI - a test which didn't find anything. Don't get me wrong - I'm glad that there isn't any obvious brain and neck stuff, but I want answers.

I wish that we knew what was wrong - then, I would at least feel justified in paying so much.

Oh well. Off to soak my woes in guinea pig laundry, dishes, and cool things.