Category: theme days

Therapeutic Thursday: link roundup

Posted on by Grayson

Like with chronic physical illnesses, mental illnesses bring up questions of disclosure. For one, should you tell your boss? The author of this article says yes.

If you love someone with depression or anxiety, you should definitely check out these 11 ways to be an effective partner.

My spoon photo project is ongoing. I can only hope that it can have as much of an impact as this project on what it’s like to live with depression.

Also I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

Terminology Tuesday: acute vs chronic

Posted on by Grayson

When you hear acute and chronic what are the first things that come to mind?

Most people think of math when they think acute and of pot when they think of chronic.

Quite simply. acute means short-term and chronic mean long-term in the medical world.

An acute illness would be one that ends after a while. The flu or a cold are great examples. Breaking your leg or similar things are more long-term but still considered acute for the most part.

A chronic illness is one that is recurrent or long-term – essentially a life-long illness. Juvenile arthritis and Still’s disease are examples of this.

Some people lump certain types of cancers in with long-term or chronic illness, like breast cancer. This is definitely fine I think. On the other hand, some people lump some chronic illnesses like Still’s in with terminal illness. While it is likely that my disease will kill me in one way or another, I prefer not to look at it like this.

Arthur, to me, is a lifelong friend. I know that sounds odd, but it is what it is. He’s dealing with me, which isn’t easy either.

Terminology Tuesday: pain

Posted on by Grayson

Defining pain may seem slightly silly. We all have experienced it at one point or another, whether it’s acute like a sprain or chronic like JA. Definitions often cite unpleasantness due to external stimulation or tissue damage or sensory and emotional issues.

The biggest thing to know about pain is that it’s a product of the nervous system. Your nerves, some of which are better at detecting damage or are closer to areas we tend to hurt more, send messages to your brain via your spinal cord to say “HEY! THIS IS A THING AND IT ISN’T FUN!”

That message is a little altered on the way up to the brain, so pain that occurs often or is quite small isn’t as big of a deal. Sometimes it may not even be communicated at all.

Your brain sends endorphins and other pain-killing chemicals out to help lessen the pain. Depending on what you injured, your inflammatory buddies will head to the injured area and cause a little swelling and/or patrol for invaders and germs.

Chronic pain is rough. My fibromyalgia is considered a “lifelong central nervous system disorder.” My brain doesn’t process some signals correctly – some of that could be the spine’s fault – and I wind up feeling widespread pain from things that are not painful… like clothing rubbing against my skin.

We all know pain is so much more than these signals, but I think this is something we have to keep in mind. We can be so angry at ourselves, at our bodies for not working. Oftentimes these signals get mixed up due to trauma or other illnesses or any number of things. Let’s be patient with ourselves and our bodies, as we might be with a sick child.

 

Medical Monday: link roundup

Posted on by Grayson

Starbucks has banned someone for kindly asking those without a handicapped placard to leave the handicapped spots alone. I get that this could be seen as harassment and loitering and so Starbucks may feel as though it’s a justifiable move. However, the fact that it doesn’t seem like they care that much about their disabled customers scares me. When I read this article, I was actually sitting in a wheelchair in the airport debating getting Starbucks… and quickly changed my mind.

At least I didn’t run into this cop.

Did you know that disabled people have worse unemployment rates than their ‘normal’ counterparts?

If you’re tired often, this Buzzfeed post may resonate with you.

Even if you don’t have multiple sclerosis, you likely can identify with the struggles Matt highlights in this article. While he focuses mainly on dealing with the SSA and having a cyclical disease, I think that there is truth in that being a barrier to so much that we do. We’re in this interesting place often where we don’t look sick but we’re not normal; we don’t need help all the time, but often get denied it when we need it; we’re looked at as freeloaders and not people frustrated that they can’t fit into today’s ideas of productivity (as misguided as they are).

Speaking of MS, check out this video where President Obama speaks about Michelle’s father and his MS.

Have you heard the terms step therapy or fail first a lot, but don’t know what it means? Prescription Process has a great and simple page to explain it here.

Autoadapt has created this badass swivel seat for cars that could change how some people with disabilities get around. How cool is that?

Nike came out recently with shoes that are great for people with motor impairment and who can’t do shoelaces. The price is basically what you expect from the company ($100+) but these shoes are getting great reviews.

With my recent trip to the Juvenile Arthritis Conference, it was stated over and over again that we are lucky to have biologics and more treatment options now than others have had in the past. On the other hand, those drugs are insanely expensive and can bankrupt families. Insurance is constantly changing and not covering things as well as before in some cases.

Also, if you love someone with anxiety, check out this post on what it’s like to live with it.

About 1 in 5, or 20%, of American adults have a disability. So many of us have invisible ones. It’s hard on every aspect of our lives to have something that no one can see, and yet we can at least pass for ‘normal’ when we can. People don’t believe us or on the other hand coddle us to feed their ego. The suggest things that can be very dangerous like homeopathy. We often have to change medications in rapid succession, and the realization that you can’t find something that works for you is so difficult emotionally to handle. We either tell everyone we see about our illness or we try to hide it, much like my guinea pigs do with injuries due to being prey animals. Either way we get weird reactions. We’re admonished for not being as active as we maybe once were and yet at the same time we’re treated like addicts when we try to control our pain. It gets to the point where we or our sweet loved ones are fighting others off like emotional wolves… or we spend all our time trying to educate them.

We have GOT to start treating disability rights as a mainstream thing. It’s about basic human rights, and we deserve those – visibly ill or not.

 

Self-care Sunday: struggles with self-compassion and affirmations

Posted on by Grayson

Affirmations can have an amazing impact on our lives.
One of the best things I’ve done for myself is to start reading Blessing Manifesting. I know I’ve talked a bit about the site and Dominee, who runs it, but I just can’t stop.

When I first really started out on the journey to loving myself, I snagged a bunch of her free stuff. I posted a few of the things up on my bathroom mirror, where they still sit.

 

I think a big part of the problem was learning to trust myself. Growing up in my household, I was constantly praised for my smarts and then told that I was an idiot. I became very insecure because I internalized the latter even if the former was true.

In order to truly start knowing myself, I’ve had to treat myself like a best friend. I often think about how I would treat T or Kels if they were going through similar things… or, at least, what I would tell them. Between that and reading these every time I’m in the bathroom, it really started to click.

Instead of pushing myself too far, I am resting when needed and learning to speak up about things. It hasn’t been easy. There are days where I’ve wanted to rip those papers off the wall and feed them to the guinea pigs… because that wouldn’t be as wasteful and they LOVE paper, especially Jaq.

Another thing that seemed to be in my way is patience. I usually am really good at being patient with others but I often feel impatient with myself. I should be able to do what I want, whether it’s cooking or cleaning or building a desk.

It’s been really hard to have to step back and try to be kind and show compassion to myself when my hands don’t work especially. Hands weren’t ever a problem for me until the last few years. As a writer and someone who is on the computer often or doing things that kinda need good motor skills, this is incredibly hard. Give me my limp any day over crip hands!

Anyway, this is where affirmations can really come in handy. They can be really simple or general.

Or very pointed and specific.

Either way, they can really help.

What are some affirmations that you might be able to use?

Terminology Tuesday: heat intolerance

Posted on by Grayson

One of the terms I’ve been asked to explore is heat intolerance or sensitivity. It’s also something that I deal with because of my fibromyalgia, so that’s fun. Issues with heat can happen with a ton of diseases and medications, so it’s a wide reaching problem.

Multiple Sclerosis is one of the biggies with this. I watched my great grandmother deal with MS and it was hard to see her deal with the symptoms. I wish that she was still alive now that I’m an adult because I have so many questions for her regarding illness things.

Sigh.

Temperature is regulated in the hypothalamus:

It’s supposed to send messages to your body to sweat when you’re too warm to help cool you down. Sometimes it doesn’t – or doesn’t send a strong enough signal. Again that can be for a multitude of reasons.

It almost is like that feeling of when you get into a really hot car and your body freaks out yelling at you about getting a black car with leather seats… You may get headaches or nauseous or lightheaded.

I feel bad, but when I get overheated my brain kind of just craps out. I feel like it’s a lawnmower that’s run out of gas – and that makes it hard to get it started again too.

The most important thing to do is get to a cooler place. Turn your AC down a few degrees or sit in front of the fan and hop into a cool bath. Stick a cool towel on your neck or strip down to your birthday suit or lay on the floor since heat rises. I usually do a few of these things at once and it helps a lot. It’s really important to keep these things in mind as we are in the middle of a heat wave in so many places across the globe.

 

Self-care Sunday: traveling with a chronic illness

Posted on by Grayson

As you read this, I’m enjoying my last day in Orlando at the JA conference and working on heading home to Wisconsin. Naturally writing a post on traveling seemed like a great idea… mostly because maybe I can remind myself while I write this of things to do.

The first and biggest thing is to relax and rest. I think it’s natural to get anxious when traveling with an illness, especially if it’s hard on your body.

Make sure that when you are traveling for leisure that you make sure to plan for breaks. Tackle one big thing in a day and maybe leave a flex day in case you’re not feeling well. Pacing yourself is the name of the game, especially if you’re going to a major destination like a theme park.

T and I always try to plan what we want to do and leave a flex day or not finalize things other than out hotel arrangements so that we have more flexibility in what we do.

It can be super tempting to load up on the caffeine, especially if there’s a time difference between where you’re going and where you live. It’s totally fine to do that, BUT you also need to make sure you’re drinking enough water. A good rule of thumb is to have a glass of water for every caffeinated – or alcoholic – drink you have.

I usually try to snag Smart Water when I’m traveling. It has electrolytes which are good but it also comes in a gigantic bottle, which means you get a lot for the money you pay. Since it is a little pricier, you may be more inclined to finish the water too. I know I am!

Make sure you eat enough when you’re traveling too! It’s really easy to get caught up doing something fun and almost forget to eat. Making sure you eat enough will help you have energy to do the other things you want to do.

If you’re traveling, let yourself indulge a little bit okay? I have a potato problem, so when we go places that is often my biggest indulgence… okay, and dessert, but DUH.

That said, make sure you’re eating enough protein for energy and getting enough healthy things in you.

Organizing will make traveling a lot easier. Work on gathering things for your trip early on. My coworker starts a pile in her living room and everyone works off of a list, adding to it every day. They check off the item when it’s in the pile, which helps them keep track of what they’ve already got ready to go.

It may not be as simple to do that, but you can usually start small. Our trip to Orlando had me working on a list at the beginning of the month. It was easy because T was gone for the week so I felt like I had to do things! More than that, a lot of the things that I was working on packing were things that I don’t wear on the regular – crop tops, short shorts, etc.

Don’t worry, the sunscreen will make it into our bags too!

This also includes prepping meds. Making sure you have a pill organizer that can hold your pills or, at the very least, that you can fit the pills you need in your luggage or purse.

This is my pill organizer.

The inside is great because it has more than enough room for up to two weeks of pills for me, depending on how many vitamins and such I’m taking. I may just put those in a separate pill holder.

Some medications really should have a note with them, like biologics. It makes it easier to fly with them. This also means you need to have a cooler and whatnot to keep those items at the best temperature you can while traveling.

Luckily, that means you’ll work on bringing ice packs with you!

The last time I flew, I took advantage of pre-boarding. I am SO glad I did.

I didn’t use a wheelchair, but I could’ve definitely used it at some points! It was so much easier to get on the plane first because I wasn’t having to walk in a different and uncomfortable pattern. I also was able to easily navigate the rows with my bag instead of that awkward aisle shuffle. I was able to get settled into my seat without so much hassle as well.

I don’t think I’ll fly without it – unless we can get the exit seats.

What are some tips you might have?

 

Therapeutic Thursday: I am mentally ill, and that’s okay

Posted on by Grayson

It’s one thing to discuss the limitations of a mental illness and another to stand up and say that I am mentally ill. Mental illness has so much stigma associated with it. It’s easy to pretend we’re okay when we interact with others because they can’t see – just like with physical invisible illnesses.
A couple of times now I’ve engaged in conversations on social media about remembering to be inclusive of those with mental illnesses when we’re discussing or designing things for physical illnesses. Each time I’ve gotten hit with personal crap that didn’t need to be dragged into the situation – and this is from other chronically ill activist types.
Each time I’ve gotten comments about how, essentially, I need to get over what happened, see the great things that I’m doing, and move on to a more optimistic mindset.
I need to point out quickly that none of these things would be said if I was a veteran or had been through a major publicized tragedy. But nah, just grew up being beaten, belittled, and mind-fucked, so no biggie here.
Sigh.

Those of you who know me in real life know that I’m actually annoyingly sweet and optimistic when my mental illnesses aren’t getting in the way. I have to stop myself from running when I have a good day in the middle of a flare because surely I’m fixed now! I have to calm myself down when seeing movies because I get so excited that I bounce up and down like a small child.

I am SO much the heart from the heart and brain comics that it isn’t even funny.

And yet these people who are supposed to be about helping each other attack others who aren’t into optimism or positivity 24/7. It’s so nauseating and I don’t understand why this continues to happen. Suggesting that people remember to be inclusive or stop using ableist language isn’t an attack – and it doesn’t warrant responses that feel like personal attacks. That’s already something that I sadly get in the chronic illness community because I refuse to be inspiration porn or happy all the time dealing with my physical illnesses.

I’ve also had it pointed out to me that I still accomplish cool or big things, as if those things wouldn’t be able to be done with mental illnesses and I must not have it as bad or not be ill. If any of you who are thinking that are reading this, know that some of the best artists and scientists in all of history lived with these illnesses. That does not make them any less ill.

In our big community, people attack each other for a lot of things – positivity, inspiration porn, physical activity level, not being disabled enough, etc. People jump to each others’ aid when this happens, and yet do nothing when the conversation is about mental illness. I guess it would change things if that was something that happened, but it isn’t. Nonetheless when these things happen, it really makes me question why in the world I’m involved with this shit. Honestly.

It makes me question every single thing that I’ve done since 2007 to become more involved in the illness community. It makes me question going back to school, being involved in these orgs and groups, and even blogging. Sometimes this even comes from people who I’ve helped a good amount and it makes me question my decision making skills.

I’m sure some will respond that I shouldn’t let people get to me, that I’m the only person who can make myself feel inferior, and other bullshit.

I have mental illnesses. These don’t make me any less of a person but, unfortunately, they affect the way I interact with others. My brain is wired – literally wired – differently than someone who hasn’t dealt with depression or anxiety or PTSD. On scans, my brain looks different than yours because of the abuse I’ve lived through. I cannot change that any more than I can change my eye color – I can cover it up with contacts and not tell anyone, the truth but it’s still there.

Even as this post goes up, I’m getting ready to spend time with other juvenile arthritis peeps at the JA conference. I’m nervous about who I will interact with and how I will portray myself. I’m worried that I will have an anxiety or panic attack and everyone will know. I’m worried about saying the wrong thing and making it obvious I have shit social skills. I’m worried the abuse that I’ve lived with every single day will pop up and make it hard to do what I’m there to do – interact with others.

I worry about this more than anything – more than lines at theme parks or applying enough sunscreen or hurricanes or delays in our flights or flaring up from going or the humidity down in Orlando.

I worry about this so much that I can barely sleep. The sleep I do get isn’t restful. My body is on edge constantly, which makes my physical illnesses angrier. I worry about it so much I don’t speak so much to my husband as I do to our piggies because I know I’ll bring this all up and I don’t want to talk about it.

It affects work. It affects home. It affects my doctor and therapy appointments. It affects the very little social life I do have. It affects my other illnesses. It affects my self-esteem. It affects how I parent my guinea pigs or relate to my husband or talk to others in my family.

If you want to learn more about mental illness, ask kind questions of others. Don’t attack them or turn conversations about general topics into specific things about that person. If you want to be helpful, use kind and calm words. We all jump to someone’s aid when there is a misconception about their physical illness – why do we jump to the attack instead when it’s about mental illness?

Next time you feel like questioning someone’s illness, please remember how shitty it feels when you’re on the receiving end.

Terminology Tuesday: fibromyalgia

Posted on by Grayson

Up until recently, fibromyalgia could easily be dismissed as a psychosomatic issue by some really sad doctors. The American Pain Society has labeled fibro a “lifelong central nervous system disorder.” But what does that mean?

Literally it means fiber muscular pain.

Symptoms include fun things like:

  • Problems sleeping
  • Problems with temperature regulation
  • Sensory overload or sensitivities
  • Headaches
  • Brain fog
  • Numbness and tingling
  • Irritable Bowel Syndrome
  • Allodynia (pain coming from a sensation that isn’t actually painful like T holding my hand)
  • Anxiety & depression
  • Muscle pain, weakness, and/or tightness
  • Feeling like something is swelling even if it isn’t
  • Irritable bladder
  • Fatigue
  • Muscle spasms
I could go on. There is really a lot that can fall under the symptoms category unfortunately.
Fibro sadly can affect everyone even children. Often fibro is a secondary condition to an autoimmune disease like RA. The vast majority of us are women, but the men that experience this pain are under-diagnosed and often don’t seek help. Also, fibro is a lot older than most people think.
As seems to always be the case with chronic pain diseases, we don’t know what causes fibromyalgia. Some can trace the onset to an illness, accident, or other stressful event (possibly PTSD related at times). Others can’t. The fact that it is now considered a CNS disorder will hopefully help us investigate further and find a cause.
Fibro is diagnosed through these tender points. Some doctors will make a diagnosis based more on the patient’s history than these tender points, but it all depends on their familiarity with the disease. That said, there are often tests to exclude other issues like problems with your thyroid or sleep apnea.
Sadly there are a lot of doctors who don’t believe fibro exists as I pointed out above. That means that people can live in pain for years before getting help. It’s important to bring this disease up directly if you feel as though you’re suffering from it. If your doctor reacts strongly in a way that suggests they don’t believe, get a second opinion.
Treatment isn’t awesome. Like RA and others, it often requires a multi-provider approach. Those on the care team can include your primary care doc, rheumatologist, physical therapist, mental health therapist, and pain management team to name a few.
Medications are often hit and miss.
  • Lyrica can be really effective, but some react poorly
  • NSAIDs
  • Milnacipran/Savella, a Serotonin–norepinephrine reuptake inhibitor
  • Gabapentin, which tends to make people sleep all the time
  • Cymbalta
  • Muscle relaxers like Flexeril
  • Narcotics/opiates
Unfortunately, the last few on the list make you really tired. Even if you felt like doing things due to pain being reduced enough (which isn’t often the case), you’ll be mostly asleep.
Massage can be helpful, but not always due to the sensory issues the body has. They tell you to reduce stress, but it’s so hard to stay calm when you can’t even wear clothing because it hurts to badly. Changes in diet and exercise as well as therapy can help, but do not always unfortunately.
It’s hard to communicate how this all feels to someone, especially if you’re trying to be intimate or accomplish tasks around the house or having to stay home from work. Saying that it hurts to wear clothes sounds silly in our heads. Often we feel unsuccessful – if we can’t do the basics, what the hell can we do?
The good news is that there are plenty of successful people living with fibromyalgia. My favorite is and always will be the amazing Morgan Freeman.
His fibro was triggered by the car accident he had in 2008. The arm that was broken in the crash is the spot most affected by the disease. He doesn’t speak a ton about it, but he is a great advocate.
Others include:
  • Sinead O’Connor
  • Susan Flannery
  • Jeaneane Garafalo
  • Michael James Hastings
  • Rosie Hamlin
  • Florence Nightingale
  • Frances Winifred Bremer
Those may not all be names we recognize, but they do good awareness-raising nonetheless.
The hardest thing for me is how it affects my interactions with the outside world. As I’m writing this I have a fan aimed at my fingers which are so angry from fibro pain. It’s almost like a burning tingle. I know that getting too warm caused it, so I’m trying to cool that most affected part of the body down. I may break an ice pack out shortly here.
I’m a really physical person. I love snuggling with T even if that just means touching feet while we’re on opposite ends of the couch. The pain this disease specifically causes is awful. It robs me of that physical closeness with my husband – or anyone else for that matter. My almost three-year-old niece isn’t going to understand if my hands hurt when she holds them. So I pick my battles. I will power through that pain for my loved ones. If it’s really bad, I’ll say something to T and we may hold hands or connect differently. I worry about what this means for when/if we have children.
I hope that this was a helpful article for those of you either dealing with fibro or wanting to learn more.