Meeting Emily of Chronic Curve!

Posted on by Grayson

If you follow me, you’ve no doubt heard of Chronic Curve. She’s amazing.

She also just happens to live a few hours from Orlando, meaning T and I made the gorgeous drive out to visit her while we were down there for the JA conference. We didn’t get to spend as much time as I wish we could’ve because of the drive, but it was well worth it.
Em and I are so similar. It’s insane. Well, except that she’s met Snoop Dogg and I have not.

Insert sad face here.

The amazing thing about Em and I, though, was that, while we had vaguely heard of each other in passing before, it really took Laura’s death to bring up close together. I have no doubt that we would’ve figured out how awesome we both are sooner or later, but the fact that our friendship was cemented in such grief and sadness I think makes it that much cooler. The three of us honestly are all similar and I wish that Laura had been able to physically be there with me and Em.

I also got the distinguished honor of being the first person that Bruce the Boxer has immediately warmed up to. I think I smelled like his slobber for like two days, but I wouldn’t have changed it a bit!

Me and mah new BFF

It was so fun to meet Em and drown in Bruce slobber. The latter was definitely therapy, but so was the former. Meeting someone you admire and care about is pretty cool, but it’s elevated to new heights when it helps fill a void from a loss.

 

ePatients & health care decisions

Posted on by Grayson

The biggest thing you have to learn is that you matter and, therefore, your opinion about your care matters. In fact, it can be the most important opinion there is. After all, you’re the one stuck in your body. While a doctor may know how the body works, you know how you feel.

Learning to be your on advocate or a partner in health care is what the ePatient idea is all about. The idea of a patient as a potential expert and someone who should be involved in their care is growing in popularity but still hard for many to wrap their heads around.

In the past, health care has been paternalistic – rules by a lot of old white guys who, in their white coats, tell you what to do and you follow their instructions. You don’t ask questions and you don’t stray from the path – at least, you don’t tell them you have.

Now it’s all about working together, with the patient as a part of the team. There are usually two ways this can go – shared decision making (SDM) or informed decision making (IDM). Neither is better than the other in general, as their success really depends on what type of person you are and approach you want to take.

Share decision making is where you and your health care team would review options and make a decision together. There is back and forth and a discussion.

Informed decision making is where your health care team presents options along with information about each path and you choose one that might best fit your life.

In reality these two are very similar to each other. Again it really depends on your personality. If you like to be a little more guided or work on a team, SDM may be better as you’re not the only one really involved in the decision. If you’re very independent, IDM may be better.

I prefer a shared decision making process. As a rare disease patient, I have become an expert in my own diseases and how they affect my body. My current rheumatologist recognizes that and we speak much more like equals than a top-down approach you might get in other scenarios.

Something else that I love about her is how involved she is in the greater rheumatology community. She’s active with the local chapters of the Lupus Foundation and Arthritis Foundation. She’s also SUPER STOKED to see what I’ve just learned from the JA conference and what I will have learned from MedX after September.

What type of decision-making process do you enjoy? Have you tried multiple approaches?

 

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.

 

IQ Massager Pro V review

Posted on by Grayson

A few weeks ago, my awesome friend Melissa and I took a trip to the Abilities Expo in the Chicago area.

 

Gah my moon face is killing me

We were accosted by a salesdude who was great at schmoozing. We’ve decided that he thought we were mother and daughter. Anyway, he was selling this IQ Massager Pro V dealy and basically like slapped them on us before we could run away.

After sitting there for a few minutes and playing with the device, I did a complete 180 on everything I’ve ever felt about tens units. My mom had a shitty one when I was in high school and college that would zap you. It wasn’t easy to control and didn’t have different settings. The contacts were not stable and no one ever should’ve been using that thing. This little guy though was like heaven on my angry neck.

We got a deal on two and split the cost thanks to the schmoozer.

After an almost two-hour drive home from the expo, I needed for sure to use this device again. I was able to play with the settings more and really enjoy it. I’ve found a few settings that are the go-tos depending on how I’m feeling or what type of pain I have.

The nicest thing is that this has really helped the area where my neck and shoulder meet, which has been a problem area that nothing really helps. My former rheumy thought it was tendinitis, but did nothing for follow up or a confirmation so who knows? From my own investigations, it seems like tendinitis in my trapezius muscle area which runs from the base of your head/neck to your shoulder.

My faces are ridiculous I know, but I had it up too high!

It’s not an area that is easy to deal with. Having my left arm in a sling can help, but isn’t always the most practical – especially if I’m at work. This little guy can though. It’s also an electrical muscle stimulator (EMS) which means it’s an FDA regulated machine so that’s always nice. It charges via USB too which is great! And you can use two sets of pads at once.

There are a few things I do dislike here. This particular model didn’t come with literature on where to not use the machine so googling that was frightening and caused anxiety. The pads don’t hold a lot of stick for a long time – I’ve only had it a few weeks and I’m started to kill the adhesive. The intensity of the machine seems to grow the longer you use it on a certain spot. Maybe that’s just because of how it’s working or something that it’s supposed to do but it can be surprising. It also can make me feel a little woozy from the vibrations in addition to the occasional zap when it’s up too high. I also wish it had come with a little carrying pouch!

This kinda works so it’s good I kept this I guess?

I would definitely buy this again and plan to keep using it until I kill it. It has more than covered its cost for me in how much I’ve used it since getting it. I’m able to use it at work or driving or watching TV easily and that really helps. It’s lightweight and portable, but packs enough of a punch to help. As with any electronic thing, it’s a little scary to read some of the things you shouldn’t do or people who shouldn’t use it and all that.

I joked the other day that I wish there was an easy way to set my relationship status on facebook to married to T but with this machine as my lover. It’s silly I know, but an indication of just how effective it’s been for me.

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.

Medical Monday: link roundup

Posted on by Grayson

Ever want to cleverly get back at someone who parks in a handicapped spot without needing it? Here’s an idea for you – post-it notes.

If you’re on tumblr, go follow ‘Arthritis Humor.’ It’s pretty awesome. Hey, while you’re at it, follow me there too! I don’t always post things about chronic illness, but you’re more likely to see pictures of my piggies there or on instagram than anywhere else!

With the recent awesomeness regarding marriage equality, it’s worth noting that our work isn’t done. Unfortunately there are many more civil rights issues out there, even regarding marriage. Many people with disabilities have to forgo marriage because it would lose them disability benefits or Medicaid and the like. Even more than that, if the government thinks you’re basically married, then they could take away these benefits. Sadly, I know many in this boat.

Sadly, flying with a wheelchair really, really sucks… But there are wheelchair accessible beaches out there so there’s that. Hopefully with this wheelchair that can climb stairs, everywhere will become more accessible! And hey, if that’s not cool enough, check out how this dad made an accessible swing in his backyard!

Speaking of, the 25th anniversary of the ADA is this month!

We all encounter those who don’t think we’re sick. Now you have a guide for how to handle them!

If you’re living with someone dealing with a chronic illness, or just want something to show friends, check out this post on helpful things to say to someone in chronic pain and this one on 29 secrets of being a caregiver. And if you’re in a relationship with chronic illness? Check out this article on lessons a partner has learned and this one on intimacy.

Often, those of us with disabilities face issues with parenting. For some, it’s fertility or disease activity-related, but it can be a mental crapshoot as well. We wonder if we’ll be effective enough parents – helpful enough for our partners but also active enough for our kids. This isn’t limited to humans either – sometimes pet parents have these issues too… though I don’t have to worry if my piggies will be sick like me.

There are pretty cool toys to help children with JA and other diseases with joint strengthening.

If you’re looking to break up with your doctor, make sure you do it the right way… maybe it’ll be because he uses the Figure 1 app and that creeps you out.

Speaking of doctors doing things, check out how a clinic in Yakima, Washington, is utilizing social media.

The INTERCEPT system, used in Europe for some time already, is coming to the US! It helps rid donated blood of pathogens.

Check out this rare disease toolkit set!

Ever curious about how medications get approved? Novartis has your back!

If you’re able to work out a lot, check out the Charity Miles app. You can donate to your favorite charity via your workouts!

They are working on tricorders you guys!

Here’s a cool article explaining how to go about conserving spoons. Speaking of, check out my recent photo project!

Like many states, Kansas’ state health care isn’t really helping people with disabilities. Unfortunately that seems to be a direction we’re going in the country. Here in Wisconsin Scott Walker has made so many cuts that he’s kicked thousands of deserving and needy people off of government assistance.

Medical debt isn’t exactly a fun topic, but one we need to discuss. Here are some ways to battle that debt. The people over at RIP Medical Debt have a good plan too – one that allows us to erase a ton of medical debt. See, debt is often sold to third parties who conduct collection calls and such. This company is looking to be one of the third parties – and erase debt. That’s pretty awesome.

If you need a laugh, Dr. Oz has to go back to clinical practice as punishment for being a quack. Or you can watch this video from Buzzfeed on what it’s like to date a med student… which may or may not also describe living with me.

Toni Braxton has opened up more on living with lupus and what she finds is hardest about that. Oh hey, Daniel Radcliffe has cluster headaches so the spoonie community just got that much cooler. And Dominique Easley from the Patriots is helping his sister battle fibro. Did you know Amy Schumer is a HUGE MS advocate? Perhaps the coolest information as of late? Serena Williams has been studying pre-med after her sister Venus’ Sjorgen’s Syndrome diagnosis.

 

Therapeutic Thursday: Juvenile Arthritis Conference

Posted on by Grayson

It’s almost time!

This Saturday Theron and I will board a plane to Orlando to spend a few days exploring before the JA conference!

We plan to spend a few days at Universal because HARRY POTTER YOU GUYS.

I can’t wait to try butterbeer and all the fun things. Oh and we’re going to Busch Gardens too!

I can’t wait to see how the little cats they had a few years ago have grown. Watching Wildlife Docs is making me even more excited.

Then I get to meet up with this hottie, Emily of Chronic Curve, who is practically my galentine soulmate. Just saying.

Honestly this already is so much coolness that I’m freaking out a little bit.

But THEN…

I get to go hang out with JA families and cool peeps from Arthritis Introspective again!

Honestly I just hope I can keep up with all this! I tend to get overexcited and fill my plate a little much with these types of things.

When I get back, I’ll be starting kineret. We didn’t want to start it before I went in case I had a bad reaction or someone didn’t get the memo about not bringing sickness to the event with kids on chemo and biologics.

I’ve written up a ton of blog posts so you won’t have to miss me when I’m galavanting around and enjoying more Harry Potter land than you!