Category: tips and tricks

9 Helpful Gifts for Your Disabled Loved One

Posted on by Grayson

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

a photo of a person painted gold in the background with white text: "6 Things I Wish I'd Known About Endoscopy and Colonoscopy Prep"

6 Things I Wish I’d Known About Endoscopy and Colonoscopy Prep

Posted on by Grayson

A fewweeks ago, I had an endoscopy and colonoscopy. While the IV bruise is finally healed, I’m still wishing I’d known more going into the prep stage.

Hydration

The suggestion to chug Gatorade and water is more than a suggestion.

Buy wipes

Yes, butt wipes. I already use them but, if you don’t, get a travel pack. Your butt will thank you.

Skip the broth

Look, chicken broth was on the pre-approved okay-to-drink list. After one glass, I don’t think I’ll be able to have chicken broth again for a long time.

Invest in Jello

Do it. As soon as your procedure is scheduled. Don’t be that person making a last-minute Target run when you’ve not eaten in a day and you’re having chicken broth burps.

Don’t try to catch up on podcasts

You’re going to be incredibly tired after your procedure. Skip the podcasts you love and trade them in for a nap watching Bob’s Burgers. If you’re like me, you’ve seen every episode anyway.

Take a deep breath

Just because you’re having a medical procedure doesn’t make it scary. More often than not, it’s just to rule out big stuff – and it won’t find anything.

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

Posted on by Grayson
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!
YAY!
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?

 

10 Arthritis Myths and the Facts to Dispute Them

Posted on by Grayson
Let’s explore the wonderful world of myths and misconceptions about ‘arthritis.’
 
1. Arthritis is for old people.
2. Arthritis is just wear-and-tear.
3. All arthritis is the same.
I thought it best to address the top three here together since they’re so interrelated.
Often, people think of osteoarthritis (degenerative/wear-and-tear arthritis) or osteoporosis (porous bone/low-bone-density) when they hear ‘arthritis.’ This is a misconception.
‘Arthritis’ is actually an umbrella term for illnesses in which ‘arthritis’ or inflammation/stiffness in joints is a symptom. What diseases fall under the arthritis umbrella? Lupus, Rheumatoid Arthritis, Juvenile Arthritis, Ankylosing Spondylitis, Bursitis, Chronic Fatigue Syndrome, Gout, Fibromyalgia, Psoriatic Arthritis, Vasculitis, and more.
These types of arthritis can hit anyone, from infants to the super-old.
4. Arthritis is easy to diagnose.
Wear-and-tear arthritis can be easy to diagnose, but many other types – Rheumatoid Arthritis, Lupus, Juvenile Arthritis, etc – are not. There is no one test that fully confirms which type of arthritis a person has. Some tests may indicate whether or not you’re heading in the right direction, such as a positive ANA may indicate Lupus, but isn’t a for-sure thing.
These diagnoses are made by exclusion and symptoms.
 
5. Yoga cures arthritis.
NOPE.
While physical activity can be very helpful for types of arthritis, it isn’t always the easiest thing to undertake. I have actually been banned by my rheumatologist from doing yoga before due to how detrimental it would’ve been on my health at the time.
We patients, in conjunction with our doctors, know what is best for our bodies. Please don’t recommend types of physical activity to patients unless we ask for your input.
 
6. Rum-soaked raisins cure arthritis.
ALSO NOPE.
There are NO CURES for ANY TYPE of arthritis. Just no.
Again, we patients, in conjunction with our doctors, know what is best for our bodies. Please don’t recommend ‘cures’ to patients. EVER.
 
7. Arthritis is a minor inconvenience.
Arthritis causes excruciating pain that cannot be expressed with words. Aleve doesn’t do it to kill the pain – oftentimes even opiates only minimize the pain enough for people to be kinda functional.
On a good day, my pain sits on a 3-4 on the pain scale. On a bad day, I jump up to 7-9… mostly because I am reserving my 10 for whatever will wind up being my stubborn butt’s first hospital stay. When I hit those bad days – and that is at least half of the week – I cannot focus on anything. If I absolutely have to accomplish things, they’re done with less attention and care than they would be on a better day.
 
8. Treatments halt damage and pain.
Even people in remission (no active signs of their disease – this is not the same thing as a cure) still have pain from their illnesses. Treatments or no treatments, there is still pain.
 
9. Damage only happens when there’s pain.
Pain isn’t an indicator of damage. Damage can happen whether or not pain is an issue. This is why it’s so important to be on medications to treat arthritis types, no matter your pain levels, unless your care team believes you are in remission.
 
10. It’s not like arthritis ever killed anyone.
Um, it has. So many people, including children.
I mean, the reality is that the medications we take have side effects – not all of which have truly been studied yet – and, thus, effects ripple through various parts of our lives. The disease itself causes major issues that, again, aren’t fully understood by healthcare providers yet.
We live in pain every single day in a society that doesn’t get us, leading to depression and higher rates of suicide in the general chronic illness community, too. This is important to remember as we look to revamping mental health care in the United States (I hope).
 
These are just my top 10. What would YOU add?

 

9 quotes to inspire you to bounce back

Posted on by Grayson
One of my favorite words in the English language is resilience. Merriam-Webster defines resilience as:

1:  the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress;

2:  an ability to recover from or adjust easily to misfortune or change

When I think of resilience, I think of myself and other patients facing lifelong illness-related issues. Resilience is the perfect word to describe what traits we possess without using words like strength, which are too commonplace and far less meaningful.
Here are a few of my favorite resilience quotes – enjoy!
“I am not what happened to me. I am what I choose to become.”
-Carl Jung
“My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present.”
-Steve Goodier
“Resilience is, of course, necessary for a warrior. But a lack of empathy isn’t.”
-Phil Klay
“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going.”
-Yasmin Mogahed
“Toughness is in the soul and spirit, not in muscles.”
-Alex Karras
“Though she be but little, she is fierce!”
-William Shakespeare, A Midsummer Night’s Dream
“You may have to fight a battle more than once to win it.”
-Margaret Thatcher
“The greatest glory in living lies not in never falling but in rising every time we fall.”
-Nelson Mandela
“It takes courage to grow up & become who you really are.”
-E.E. Cummings
What are some of your favorite quotes?

 

How to act to have your doctor take your pain seriously (sarcastic post)

Posted on by Grayson
how to act to have your doctor take your pain seriously
Physicians are supposed to be able to navigate around emotional situations and decisions to solve issues and provide care for people. Sometimes the way we act can, apparently, still influence thoughts regarding our health. This is especially true for those of us dealing with chronic health issues and invisible disabilities.
 
This post is, in part, a sarcastic piece but also a piece in which we discuss the often ridiculous experiences patients have due to looks, actions, and assumptions.
 

1. Do not smile. Ever.

I went to my a former general practitioner knowing, essentially, that I had a dental abscess. I was looking for antibiotics to help treat the issue or some guidance on what to do. When I arrived, my doctor was less than compassionate. Because of the fact that I’m a bubbly person who is polite and smiles, I wasn’t taken seriously. He literally laughed in my face and said it was a pimple when my reaction upon him applying pressure to it (which, btw, is a no-no) wasn’t as horrible as he expected. I replied that I deal with very high numbers on the pain scale fairly often and that it’s pretty ridiculous to expect every person to react the same. Long story short: it took my (now-former) rheumatologist’s office seeing me two weeks later for someone to treat me for the abscess.
 
Tip: Always look pained while at the doctor for a pain-related issue.
 

2. Do not be fat.

I have so many stories I could share here. One friend had tonsillitis that a physician refused to do anything about, despite the obvious diagnosis, because she was overweight and that would eventually cause breathing issues. He also did no actual exam to look at the tonsils. Another friend was told that her rare neurological headache condition was caused by her weight. The most frightful thing about this situation is that the physician seen is one of the top experts in this type of condition. One of my favorite patient people was told that her abnormally heavy period (menorrhagia) would be solved by losing weight. She was told this at 15 and then was instructed on ways to lose weight, especially withholding food from herself, by the doctor. I could keep going, but then I might break my laptop out of anger.
 
Tip: Don’t be a part of 36% of Americans within the overweight or obese guidelines, even if that’s due to muscle or an issue related to your illness, disability, or pain.
 

3. Do not be poor.

Not only do those living in poverty have to deal with issues related to access to food and medical care in the first place, but when they do see a healthcare professional, they’re basically dismissed. One friend, also dealing with Still’s, was told that his abdominal pain was being caused by a horrible diet – a diet that one keeps when one is poor, by the way. In the end, his gallbladder had to be removed via emergency surgery with a long course of antibiotics. Another friend’s specialist asked if she had an exit strategy to get off of welfare. She’s not on ‘welfare’ as she works, but does receive some forms of public assistance. If you’re uninsured or underinsured, you can expect to not be fully treated or even fully evaluated for an issue… even one as fairly obvious as a staph infection in a patient with a history of them.
 
Tip: Pick yourself up by your bootstraps and stop being poor already.
 

4. Do not be a woman.

There is so much to say here – especially for those of us who fall into additional marginalized communities such as those with disability or people of color. If you suffer from any pain related to your reproductive organs, you may be misdiagnosed with sciatica, not even treated, or told to ‘suck it up’ because all women have pain ‘down there.’
 
Tip: Struggle to be more masculine to please HCPs.
 

5. Do not have a mental health issue (or fibromyalgia).

If you have a mental health issue, real or perceived, you can expect for misdiagnoses to follow you around. One of my favorite people in the entire world was being treated for some thyroid issues and depression with the thought that the vast majority of her issues were related to her depression. Fast forward almost ten years and she has been diagnosed FINALLY with Hashimoto’s Disease, an autoimmune condition. Fibromyalgia is often seen as a mental health issue due to the lack of belief by many physicians in the disease. This is despite the fact that it’s been proven to be a malfunction in the Central Nervous System. Many women are diagnosed with fibromyalgia to shut them up and give their perceived hypochondria a diagnosis.
 
Tip: Do not ever wind up with a controversial illness that has a stigma associated with it.
 

6. Do not dress up for your appointment.

I have learned the hard way that dressing nicely when I say I’m in pain is only beneficial is I have come straight from work. Doctors do tend to take other ‘professionals’ seriously. That said, if I dress up too much, then there are questions about how I would have the energy while in pain to do so. This isn’t the case anymore but has been in the past.
 
Tip: Rags are too dressed-down, but high heels are too dressed-up. Try sweatpants with a minimum of one hole but no more than two to illustrate that you’re not poor but you also hurt enough to not give a shit about looks.
 

7. Do not let your pain control you.

Be in enough pain for the pain to be more obvious, but not in enough pain that it alters how you talk to or interact with healthcare peeps. They’re trained to deal with these emotions. It should not be that hard for them to look past the emotions related with, say, a cluster headache in order to ask the right questions to provide the right treatment.
 
Tip: Learn to be a Vulcan.

 

Medical Monday: Medication Tips

Posted on by Grayson

Before we dive into more medication tips, make sure you’ve entered this contest for a pill organizer (it ends tomorrow!) and have checked out the tips I have for managing your medications.

Some of the medications that we have to take aren’t pleasant, from infusions to shots to nasty tasting pills.

I’m looking at you, prednisone.

Here are some of the tips I’ve acquired over the years regarding medications.

1. Don’t try to take all the pills at once.

Oh, it seems like fun when you get it right, throwing the eight pills you take in the morning in your mouth in one go.

When it doesn’t work, though, you can actually choke.

Personal experience.

Please don’t.

2. Do consider taking pills with not water.

Some pills are easy to get stuck in our mouths. Drinking something slightly more viscous than water like moo juice can really help.

3. Prednisone should basically be taken with yogurt.

I’ve been on pred enough to know how nasty it tastes when it gets stuck in your mouth or throat, which it almost always seems to do.

Taking prednisone pills inside yogurt will help eliminate that while giving enough viscosity that the pills don’t get stuck.

4. Ice your tumtum while letting a refrigerated injection warm up…

So hey, let’s talk biologics.

When they’re cold, it hurts like all get out to inject them, so most docs recommend letting the injection sit out around 15 minutes to warm up.

This gives you perfect timing to gently ice the injection spot beforehand which will help lower the pain from the needle going in.

5. And ice right after you inject.

Injections hurt. Your body is already pretty full of body stuff, so piercing the skin and adding more goop isn’t always comfortable.

If you ice for a few minutes post-injection, it can help with any bruising AND pain.

6. Just rest during infusions.

Many have great ideas for being productive during infusions, bringing work or homework with them.

A lot of that anticipated productivity goes out the window, though.

Infusions suck. They make you tired, even if they’re just saline.

Please just rest. Bring a blanket and your laptop so you can watch Netflix and chill.

7. Take a deep breath.

It can be really easy, especially when starting a new medication, to be very worried and anxious. While it’s important to watch for potential side effects, it’s also important to try not to freak out too much.

Yes, I do realize the hypocrisy in my saying that.

I thought Enbrel or Humira were going to turn me into a hamster… and there’s a video on my youtube channel of me basically having a panic attack pre- and post-injection.

Try to do some meditation beforehand.

Take a shower.

Do whatever calms you, and remember that you’re not alone.

 

Therapeutic Thursday: life changing tips and thoughts

Posted on by Grayson

Sometimes we initiate change and sometimes change decides to pop in. The beauty is it really doesn’t matter how the change in your life occurred, but more how you handle it… because everything changes.

For some, it takes a major illness to make changes for the better.

Others find out ways to change their lives to work towards their dreams. Do you ever wonder what it would look like if you did that? We may not know for sure the path we choose is the right one. We may not feel we’re worthy of the change. We may not be able to make our changes full time. If we embrace our fears, we can make it through – especially if we live with more intention.

If you’ve made changes, maybe you’re feeling stuck or ready to quit. Just remember that you can do this. You may have to stop expecting so much of others, which I know is SO hard. You may need to keep your assumptions in check.

Embrace the tough times.

Let go of the healthy things other seem to require.

Take some time to nurture yourself, to take time to do nothing, and remember that this is your life.

What changes are you having a hard time with?