Bad ass post for the newly diagnosed

Posted on by Grayson

So you’re newly diagnosed with autoimmune arthritis eh? Or know someone who has been? You’ve come to the right place!

It can be really difficult to navigate the world of autoimmune arthritis, whether you’re newly diagnosed or not. There is a lot that happens with this group of diseases – and with chronic illness in general – that is unpredictable and unknown.

The first thing I’d suggest doing is to learn as much as you possibly can about the disease you have. I can’t even tell you how many times I’ve been the one who basically orders an x-ray or something because the pain I was experiencing seemed benign to the doctor but wouldn’t to an expert on the disease.

This goes triple if your disease is considered rare.

Below are some terminology definitions that can assist:

If you really want to be an engaged patient, you have to have a certain amount of self-care and self-love under your belt too. It’s hard to fight for yourself if you don’t think you’re worth fighting for. Check out the self-care/self-love page above and the resources page for help with this.

Another thing that many people find helpful is connecting with others who have the same/similar diseases. If you utilize twitter, you can do this somewhat anonymously using the hashtags #chroniclife #spoonie #rheum and more. There are tons of people and groups and pages all over social media to help you, so search away!

I can’t count the number of times my life has been saved or symptoms have been explained by fellow sickies instead of doctors… then of course you take that information to doctors and they totally agree. Social media is a great place to share, rant, and find help.

If you don’t know what a spoonie is, read the spoon theory. It’s about to become integral to your life. Oh, and join cool organizations like CreakyJoints and Arthritis Introspective!

You can check out the resources page for more ways to connect with others.

That brings up another (related) issue – support. Some people will accuse you of faking your illness or acting like you’re far worse off than you are. One of the things about loving yourself is knowing when to fight to keep those people in your life or when to dump them. Sometimes illness helps you learn who your real friends are.

And sometimes the spoon theory helps them figure out what you need out of a friend right now.

Now that you have a somewhat firm base for fighting for yourself, we can look at what you need to do to get the best care.

First of all, you need to work on assembling your A-team.

Your primary care doctor is about to become your best friend in the whole world. A lot of medications for rheumatic diseases cause your immune system to lessen which helps the progression of the disease… but also helps you get sick a lot. Make sure you have a primary care doctor that believes you are ill and knows enough about your disease to help. They also need to be team players. A great way to approach this is to tell them that you need a care team and ask if they’re comfortable being a part of it.

Your rheumatologist is probably the most important decision. You need a doctor who knows your disease (or is willing to learn), who is a team player, and who is up to date on current research and medications.

Other members of your care team could include:

  • Eye doctor
  • Physical therapist
  • Occupational therapist
  • Psychologist
  • Dentist
  • Orthopedist
  • Dietitian
  • Allergist
  • Immunologist
There are more people that this list can include depending on the severity of the disease and other factors, from cardiologists to gynecologists and more.

Also, please think really hard about the psychologist thing. It is SO important. I think everyone could benefit from someone like that, but things can get especially heavy and rough with chronic illness added in. Connecting with others via social media can be really helpful, but it doesn’t replace therapy.

Now that you’ve started to build your care team, it’s time to decide what medications you’re interested in. This is a conversation that needs to happen with the rheumatologist and any other doctors who treat you for major life issues.  I would encourage you to look through this page on juvenile arthritis basics because it includes information about the medications generally used to treat any type of rheumatic disease.

You may not want certain medications because you may be trying for a family soon. Drugs like methotrexate, cellcept, and arava all stay in the body a while and have very harmful effects on babies and fetuses.

Make sure you know what medications are covered in your insurance formulary and what you might have to do to get access to certain medications. Knowing what your insurance covers will also be important for tests and access to certain doctors.

No matter what you are on, if you find it isn’t helping or feel like it is losing effectiveness, SPEAK UP! Your care team will not know that something is wrong unless you say something (or your labs show it super obviously)!

 

Investigate any accommodations you may need for work like FMLA or for school. One of the hard things is that FMLA is unpaid unless you utilize paid time off to cover it – and that’s if you’re lucky enough to have that. It also doesn’t become available until you’ve been with a company for a year. Always check in with HR to see if they can think of anything that could be helpful for you. Likewise if you’re at school, please check in with disability services on campus.

In any case, make sure your workstations and where you spend the bulk of your time is as ergonomic and joint-friendly as possible.

If you are in college, I strongly suggest you check out Chronic Curve. Emily is amazing and incredibly helpful despite working and going to school full time with Still’s disease and other illnesses.

If you’re in a relationship or into having them, this can affect many things in regards to intimacy from sex itself to comfort levels and more. Check out the page titled ‘let’s talk about sex‘ above. It’s about everything from sex to relationships and more in the way of intimacy.

Do you need something not listed here? Let me know!

Terminology Tuesday: what is a spoonie?

Posted on by Grayson

I had an opportunity to Skype with Rohan, who created the app Buddhify, last week. We were talking about how helpful meditation is and he was getting my take on it as a chronically ill chick for his upcoming book, This Is Happening.

First on his list of questions was what in the world is a spoonie?

If you don’t know what it is, I highly recommend reading The Spoon Theory by Christine Miserando of But You Don’t Look Sick. Here’s the quick version though…

Spoons are a way to measure the finite and sometimes changing energy it takes to do things. Sometimes just being awake eats up your spoons and other times you can work out hard or nap and gain spoons.

People with chronic illness identify with this for many reasons – Christine herself is a lupus fighter. This theory helps to explain how different fatigue stealing energy is than just normal people getting tired at the same time every night. That isn’t to say that things don’t fluctuate for normal people but, to be honest, it’s a whole different ballgame. Y’all are playing T-ball compared to the murder/death/scary-words ball we got going on.

My brain fog couldn’t think of a great phrase. Hooray!

I see a lot of people ask blogs and health activists if their illness counts to make them a spoonie. Sometimes people get really negative reactions. Guess what? If you have a chronic illness, whether physical or mental, you are a spoonie. Get you some!

Hey – this week I’m documenting how much energy (or spoons) daily tasks take me. Come join in on Facebook!

Happy birthday Laura ♥

Posted on by Grayson

I miss you much lovely.

For those of you who don’t know – in December of 2012, I lost one of my dearest friends to Still’s. We’ve both been sick since childhood and she was running out of medication options when an infection wasn’t treated correctly for her suppressed immune system and it turned into sepsis… which was also treated incorrectly. This event across the Atlantic uprooted my entire life, not only from losing one of my biggest sources of love and support but from being forced to face my own mortality. She did so much to help me grow, in life and in death, and I miss her every single day.

Today is her birthday, fitting for July being juvenile arthritis awareness month. Sadly she is not the only person that I’ve known who has passed away from this disease, and many others I know of were children.

Sometimes you meet someone who completely changes your life for the better. Laura was that kind of person.

Laura Jayne, I freaking miss you. I can’t thank you enough for everything that you have done for me. You still push me to keep fighting, to keep working on being a better person and a better activist. The passion you’ve given me has led to me starting to kind of be a big deal in the arthritis and chronic illness communities, but it’s also reminded me to live with a zest for life and take chances. You’ve given me friendships in the wake of your death that will last forever. You’ve also given me a reason to eat a ton of cupcakes this week – and to bake the most adorable cupcakes I’ve ever made.

You taught me the beginnings of self-care when I didn’t feel worthy of it. You were my mentor, my first sick friend with Still’s. I still remember the first time you responded to me on twitter and I lost it because you were such a big deal for me. I miss our fun conversations during odd times because of the time differences between England and here – and our painsomnia. I miss talking wedding things… and the thought of having been involved in each other’s weddings. I miss your silly sayings, sharing resources, and the intimate conversations that you can only have with someone who is practically your twin.

I know that you’re still here for me. I know that you’re still around, and that at least makes it easier. I also know you popped in for my bachelorette party, my wedding AND me honeymoon, you sneaky goose. Every time I see a butterfly, I know it’s you… mostly because you’re pretty obvious about it by landing on me or sitting by me for a long while.

Happy 33rd babe.

Self-care Sunday: getting started

Posted on by Grayson

I’ve talked a little bit about getting started on my journey to self-care and self-love. It hasn’t been an easy one for sure but it’s been a worthy one.

Not everyone has the support system or the access to care that I do. It’s upsetting because all life is equal and I wish that our society at large reflected that belief instead of capitalism but I digress.

Since not everyone has these things, I thought it would be good to share some resources on how to get started in the self-care/self-love game.

First up is this amazing starter kit page from the School of Social Work at the University of Buffalo. Here you can learn more about what self-care is, develop a plan for yourself, and have tools to check in with yourself on how you’re doing. They even have this great self-care worksheet you should totally look into! This was originally developed for their students I think, but I’m really glad that they’ve taken the time to share this with others.

The University of Kentucky has a very basic PDF here as well. One of the things I like about this is that they include examples of self-care in the various sections. East Carolina University has a checklist that’s pretty handy.

Sometimes it’s more helpful to figure out what something is by learning what it isn’t. This site suggests that you develop an absolute no list, which can be very helpful.

If you’re someone that needs research and science behind things you do, this page has 25 things you can do that are proven to help enrich your life and take care of yourself at the same time.

If you need something a little more concrete and immediate, this is a great weekly planner.

Sometimes self-care just means watching some Netflix in the tub with the lights off and candles lit. Find something funny and let yourself laugh your ass off.

In any case, today I want you to do something good for you. Maybe it will be filling out one of the worksheets above and learning more about self-care and self-love. Maybe it could be dancing in the shower or laughing in the bath. Maybe it’ll be baking blueberry muffins and eating half the batch because they were delicious. I definitely wouldn’t blame you… mostly because I did the same thing like three weeks ago!

And blueberry muffins are legit amazing.

Therapeutic Thursdays: mental health edition

Posted on by Grayson

If you’re an introvert, you may feel very out of touch with the world around you at times. I definitely am what I’d call an extroverted introvert (yes it’s a real thing) but I’m still an introvert nonetheless. I’d rather go out to eat and then watch Food Network or Netflix with y’all than go do a ton of things. One of the biggest things that always reminds me of my introverted nature is that I HATE talking on the phone unless I’m super close to you. Even then, it’s not always my most favorite thing… unless you’re my sister really.

If you’re an introvert, it’s likely you’re also a fixer like me. We tend to keep running and running until we’re out of gas. In the last year I’ve gotten better at that and I hope that it has helped to remind you – fixer or not – of how important it is to set boundaries and take breaks.

The movie Inside Out has a lot of people thinking about emotions and how we teach our children about them. Emotional education could be the most important that we can provide. I didn’t get that and I can say that it would’ve helped immensely.

If you haven’t experienced an anxiety attack, check out this brave video. Casey wanted to record himself during an attack so that he could raise awareness of what it’s like. Kirsten King with Buzzfeed recently did a project with drawings about anxiety as well. Check out this piece on Smart Girls as well. Sometimes anxiety comes off as overthinking.

Demi Lovato has opened up recently about living with Bipolar Disorder, the mental health stigma, and how important it is to have a great support system.

If you need a break after that, check out these cool motivational posters for people who hate doing stuff.

Celebrating 25 years of the ADA

Posted on by Grayson

At the end of this month, we’ll be celebrating the 25th anniversary of the Americans with Disabilities Act.

A few years ago, I watched this great documentary on the fight for ADA called Lives Worth Living. That PBS link contains not only the trailer, but more information about the film and an interactive timeline of the ADA.

This documentary really hit me hard. I didn’t realize the magnitude of what people had gone through to secure rights that, honestly, are either not well known about or not well enforced or used. People got out of their wheelchairs despite needing them to move to crawl up in the steps of buildings in DC and demand rights. People sacrificed a lot to get these rights in place. It’s only fitting that on the 25th anniversary we remember that fight.

I think it was also hard to realize that I was alive when this was all happening. Granted I was a baby, but still… Somehow to know that rights I actively use weren’t in place when I came into the world is humbling. I am beyond grateful to the amazing people that fought – and continue to fight – for our rights.

If you need to catch up on what the ADA means, check out this collection of publications, this Q&A, or this FAQ. If you don’t have time to go through all that, this link will give you the top ten things you need to know. And if you think you know everything about the ADA, here’s a list of ten things you may NOT know.

In my state, Wisconsin, about 53,000 (6.6%) of people 5-15 have a disability. About 392,500 (10.8%) of those 16-64 do the same. (stats)

Did you know that there is an annual conference about the ADA?? This year’s just happened. You can also check out this piece on disability in America from the Smithsonian. I really like it because it goes through so many things in great detail from vision issues to ‘crip is hip’ to how those with disabilities are often looked down upon.

There are still many hurdles to tackle, so let’s not get comfortable. In celebrating the advances made, we can be comforted in the fact that children aren’t being shipped off to terrible sanitariums by parents who just can’t handle their needs only to be treated horribly by orderlies and others. We can be comforted in the fact that the disabled are not used like lab rats any longer.

Therapy and education has gotten so much better in the last 25 years. My mother-in-law has worked to help those with vision and audio impairments for most of her working life. Her daughter, my awesome sister-in-law, helps children on the autism spectrum. Despite the rough things they’ve each gone through with students, they still work hard to help these kids in their various tasks. I think that’s awesome, and it makes me proud to be a part of their family. The ADA wouldn’t be anything without those that help to enforce the laws and help those of us who need a little more assistance, so we also need to honor these people during this time.

Plus they have the best senses of humor

To find ways to celebrate in your area, please check out this events site. You may even be lucky enough to have the ADA Legacy bus come to your area! You can also sport gear to celebrate acceptance from 3E Love here. I snagged a sweatshirt at the Abilities Expo in the Chicago area a few weeks ago and I LOVE IT.

Terminology Tuesday: fatigue

Posted on by Grayson
I put a call out for some terms y’all would like to see defined further and one of the first responses I received was fatigue.

Despite the above, fatigue is hard to define. We might say we’re tired but that doesn’t quite cut it does it? Sometimes I’ll tell T I’m tired and he’ll tell me to lay down. I rebut with some iteration of ‘well, it’s not sleepy tired though.’ I might go on to talk about my lack of spoons.

It can be hard to recognize what is fatigue versus things like drowsiness for some. Personally it isn’t, but it can be hard to distinguish drowsiness for regular sleepy tired.

Monsieur Fat-i-gue doesn’t come to a party alone. He usually brings his pals like muscle soreness or weakness, joint pain, headaches, sore throats, and more. He’s really a popular guy. The fact that he has so many friends makes it hard sometimes to get to the root cause of the issue. Sometimes it’s just that we’ve spent our spoons. Other times it might be a sign of a flare up or worsening disease. For others still, this could mean a new diagnosis is on the way or that medications are having more side effects than they used to.

It can be easier, depending on what’s causing the fatigue, to get help. If it’s a thyroid issue, starting on medication for this will help. Some of us are anemic or vitamin deficient and bumping up those levels can really help. These are all things that need to be discussed with your doctor though, as vitamins and that fun stuff also have interactions, contraindications, and side effects. If it’s a medication issue, you might discuss starting a different medication or changing dosages.

There are a lot of things that can aggravate fatigue, from alcohol to caffeine dependence to weight to inactivity or working out too much to depression and grief to our medical conditions and medications. It’s important to learn how to take a step back and check in with yourself to see if any of the non-medical things could be the cause to your fatigue.

For some, fatigue is its own disease. Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or by the new name, Systemic Exertion Intolerance Disease) can be really devastating.

Generally this is a disease of exclusion where your doctor will make sure things like fibro, lupus, other autoimmune arthritis types, diabetes, and more aren’t the culprits. That said, many with CFS/ME/SEID do have a lot of overlapping conditions like fibro so it’s a hard one to diagnose.

Unfortunately CFS/ME/SEID is like fibro in that there are many doctors out there who don’t believe these are very real and concrete medical conditions. They think, instead, that there is some psychosomatic issue at play. It’s unfortunate because you then wind up with a lot of people who need medical attention and help but aren’t receiving it either because their doctor hasn’t brought up the disease due to their beliefs or because they refuse to treat a patient with anything more than therapy.

If you or someone you love has fatigue, it’s important to fight to find the root cause. If you already have an autoimmune disease, that may be the culprit but isn’t always. Track how you feel, especially if things like weather play into it. Track your medications and physical activity so you can see if you may be overusing your spoons or having a reaction to meds. Most importantly, seek second opinions if you run into a doctor who isn’t listening to you.

As always, you really have to be your own advocate with these things. Know that myself and others are here if you need help.

Medical Monday: link roundup

Posted on by Grayson

You guys should totally pick up this awesome shirt and donate towards Megan’s ride!

I wish that so many people weren’t mean about handicapped parking. Sometimes it seems to throw others off if you’re nice. I’ve noticed I don’t get as many pissy looks now that my hair is so short. Speaking of disabled things, I’m really not sure why therapy and service are both being used to describe this kangaroo. I thought you could only be one or the other.

Vermont just removed their philosophical exemptions for vaccines! You’ve probably heard by now that CVS is buying Target pharmacy. I’m a little concerned what this might mean for me, as Target is my go-to, but we’ll see what happens. Apparently RA has been linked to solar cycles?

Dude, badassery on crutches here and more in the form of like this cartwheeling turning into a split here.

Make sure you always stay engaged in your care. Push when you don’t think something is right. Don’t be afraid to say no or to get other opinions. It may just save you from pain – and worse.

If you use wheelchairs or other assistive devices, you may want to avoid using Uber. If you need accommodations at work and the like, you can check out this site on Accommodation Information by Limitation.

Singapore has a new card that will let those with chronic illnesses skip to the front of the line for the bathroom. Do you have issues with staying hydrated? Soon there will be a water bottle that reminds you to drink! I think I definitely need to get this. Would you like to start a business but don’t know how to get started? This new program at the University of Illinois-Chicago can help! It’s all about entrepreneurship for those with disabilities.

Have you heard about people who want to be disabled? I feel like they should read pieces like this on living with all the pain or this one on feeling like a junkie. Maybe if they knew diseases like fibro carry a 48 hour recovery period, they’d reconsider.

If your caregiver or loved ones need a little more of a peek into what you deal with, please have them read this. It addresses some issues both in chronic and terminal illnesses – and many of these things overlap. Another thing that is always good is to have an ID card with you medical information on it. Other people like having more electronic things like RoadID. I personally have a handwritten ID card in my wallet along with emergency contact info that scrolls along my phone’s lock screen.

Don’t forget to breathe.

Self-care Sunday: embracing the weird that is me

Posted on by Grayson

My word for June was ’embrace.’

I’m excited to say that I think I have done that on so many levels for myself.

Over Memorial weekend, I went to the Arthritis Introspective National Gathering (G8) in Milwaukee. I got to hang out with good friends – and finally MEET some of them!

I’m still reeling over meeting Britt! LIKE OMG

That gathering was amazing. It felt like home to me and that was something that I’ve been looking for for a long time.

It also has gotten me started on some really exciting projects that I can’t wait to tell you about – but I have to for now! GAH. As a preview, one of them has to do with the sexytimes.

Oh yeah.

I also embraced what my true calling is and made the decision to go back to school this fall for my MS in Health Care Administration with a focus on Health Care Advocacy and Navigation. What can I do with that degree? Move up in my current workplace or even be a professional patient advocate and go to appointments with people!

Part of why June was about embracing for me was because I needed to embrace who I really am. I still haven’t figured it all out, but I don’t think any of us do before we shove off this mortal coil.

In order to really embrace myself, I’ve had to deal with some hard things in therapy. It’s going to get worse I know, but it’s worth it. I’m not going to let go of my past, but I am going to OWN it.

I will no longer be a victim to my disease or my mother or anything else. I am what I make of myself, shitty past or not. I am a funky ukulele playing guinea pig parent who had a baseball wedding and believes in ghosts – and talking to them. I am a bomb ass wife, learning how to really be a sister and a daughter. I am a chronic illness patient and volunteer who loves talking openly about silly subjects.

Most of all, I’m a silly optimist.

 

June 27th is National PTSD Awareness Day

Posted on by Grayson

Tomorrow, June 27th, is National PTSD Awareness Day. You can learn more about what you can do to help raise awareness here.

There are, unfortunately, so many of us living with PTSD. Sometimes we don’t know it, or we do but can’t access resources we need.

If someone tells you that they don’t like certain things and are very reserved about why, please be patient with them. It could be PTSD related and you could be triggering a bad memory. Be kind and ask them what things you can avoid doing or what you can do to help them feel safer. Oftentimes, it’s just being around, caring, and being aware of triggers.

One thing you can do is wear teal (one of my favorite colors btw) in solidarity tomorrow.