Category: gif

I’ve Pissed Off Lucille Ball’s Family/Licensing Agency

Posted on by Grayson

I just got off of a phone call with a man who works with the Lucille Ball estate. It was a phone call I could have gone without, mostly from his demeanor unfortunately. It was your standard older-male-to-younger-female-who-clearly-doesn’t-know-anything-at-all type of call.

Oh, yes, it was that pleasant, complete with the interrupting cow syndrome. Finally, the third time he interrupted me I called him on it and he at least was cordial in that regard only for the remainder of
the call.

How did we get here?

This all started when, on Thursday, the local ABC affiliate where I live put up an interview they had filmed with me in early October discussing my petition. MeTV also picked it up. By 4:30pm Friday, both the stories had been taken down and I wasn’t told anything.

I contacted MeTV via Twitter and I was told the family asked them to take down the story. They direct messaged me with some further information:

“Due to continuing discussion over Lucille’s condition, her family asked us to remove the post.”

“The specificity of her condition has not been confirmed by medical professionals.”

The phone call with the individual I mentioned earlier though came from my local ABC affiliate who kindly asked this person to contact me. They had received the following:

Please tell everyone this: there was no confirmed diagnosis of Lucille Ball ever having rheumatoid arthritis. She had some sort of condition when she was in her late teens but it did not continue throughout her life and she never had any symptoms nor did she take any medication for this debilitating disease.

They were also told that this is an “internet rumor” they’ve been trying to address… though they would be in support if Lucy did have it.

Below is an excerpt from Lucy’s autobiography Love, Lucy where Lucy shares in her own words what she went through:

One winter day, I came down with a bad cold that turned into pneumonia. I stayed in my room restlessly for several days, tossing with fever, but then hurried back to Hattie’s. I needed that thirty-five dollars a week.

I was standing on the dais for a fitting when suddenly I felt as if both my legs were on fire. The pain was excruciating. Hattie kindly sent me to her own doctor, around the corner on Fifth Avenue. He told me that the pains were arthritic, possibly rheumatoid arthritis. This is an incurable disease which becomes progressively more crippling until the sufferer ends up in a wheelchair for life.

“You must to to a hospital at once.” Hattie’s doctor told me.

I did some rapid calculations. “I only have eighty-five dollars to my name,” I told him.

He then gave me the address of an orthopedic clinic up near Columbia University. That night I was waiting my turn for three hours while the city’s poor, some of the horribly crippled, went in and out. It was ten o’clock before my turn came.

The clinic doctor examined me and shook his head. I was by this time crying and half fainting from the pain. He asked if he could try a new and radical treatment, some kind of horse serum, and I said yes, for God’s sake, anything. For several weeks I stayed in my room, and he came and gave me injections; finally, when my money ran out and my legs still were not better, there was nothing left to do but go home to Jamestown… Daddy was back home again, thank goodness. He lectured me on taking better care of myself, and DeDe, although still working all day long herself, devoted evenings to massaging my legs and cheering me up.

For the first few months I was in such pain that time passed in a kind of blur. We kept up the horse serum injections, which were then considered a highly experimental, even last-ditch experiment. I was a guinea pig who survived, and the pain gradually subsided. Finally the day came when, with the support of Daddy and the doctor, I shakily stood up. We found that my left leg was now some-what shorter than my right leg.

It also pulled sideways, and to correct this, I wore a twenty-pound weight in one of my ugly black orthopedic shoes. The metal weight felt cold against my foot, and the pain as I clomped around was like needles…

In the late spring from 1930, I was still convalescing at home, my legs thin as matchsticks…

[Ball, L., & Hoffman, B. (1996). Love, Lucy. New York: Putnam. pg 46-48. Bolded parts are my own and not Lucy’s.]

Lucy modeling for Hattie Carnegie

This was not osteoarthritis in nature due to it disappearing. I don’t expect the family to know everything Lucy went through but when one of the children wrote the forward to the book, I expect that they address the contents.

I asked the gentleman I spoke with about why there had not, instead of completely removing the stories, been a comment made on the story from the family, as they apparently let the local ABC affiliate I interviewed with know that they would love to have included this if only Lucy actually had it. I got a canned response on how he would pass along my input for future use.

This could be a great PR piece, showing that the estate cares about representation of chronic and invisible illnesses, that the family listens to people even if there isn’t agreement on what happened. Instead, I get to write this scathing blog post about how very rudely I was treated.

I was told that the stories won’t be allowed back up by any means, comment or no.

I know I can’t really change their minds on any of this.

I obviously have a few problems with all of this.

  • Why was I not contacted about this initially? The person I spoke to said first that my contact information was nowhere and then, once I said that it would’ve been easy to find, that contacting me wasn’t the priority but that getting down the stories was. Still, once that happened, why wouldn’t you go to one of the sources of the ‘misinformation’ you’re trying to correct?
  • I brought up that, regardless of whether or not it was rheumatoid in nature, Lucy herself has said this was arthritis as you see above in Lucy’s own words. The person I spoke to apparently didn’t know the autobiography existed, which is strange, but also was still adamant that Lucy didn’t have arthritis at all without looking into it at all.
  • Let’s pretend the above excerpt from Lucy’s autobiography didn’t exist and this was an internet rumor… Why would the family not use this opportunity to address it as such? Why is having this illness so bad that they can’t just issue a statement one way or another?
In any case, you would think that the estate and/or the family would want to clear the air about all of this. I challenge them to do so. If Lucy didn’t have arthritis, staying quiet is not going to do anything to stop this. If she was, a confirmation would do a lot for a lot of people. If the family doesn’t think it’s anyone’s business, then they should say that too.
Normally I would say that children shouldn’t be involved in this type of stuff, but knowing that Lucie chose show business like her mother, I’m a little less sympathetic. She knows what it’s like to have fans and to need to address issues in public right? You would think she’d clear the air.
I would hope that the family will listen to the outcry from myself and others in the chronic illness community and clear the air in a way that isn’t creepy and doesn’t involve being scoffed at by some old dude that doesn’t even know enough about Lucy to be running the estate.
I hope to stir the pot enough to get some kind of statement. 
I’m not going to be silenced on this subject I can assure you.
I will let Lucy speak for herself until such a time comes that the family actually issues some kind of statement on this issue instead of censoring websites and requesting that organizations take down content that the family doesn’t agree with… Honestly the fact that they swooped in and did so is a scary commentary on our media – one that I won’t go into, but that certainly needs to be addressed because I want to sit in a dark room with a tin foil hat on right now.

 

Do you love Lucy? Click to find out ways to help her!

Posted on by Grayson

Last week, we found out that there is a Lucille Ball biopic in the works. And why not? She’s AMAZING in so many ways.

One of the awesome ways she stands out is her ability to be hilarious despite her rheumatoid arthritis.

Her battle with RA was quite intense in the beginning as she remarked in her autobiography “Love, Lucy.”

I was worried that her battle with RA would, yet again, be swept under the rug. I hoped that Aaron Sorkin and Lucy’s children, Lucie and Desi Jr., would listen to someone and figure out a way to depict what happened in Lucy’s youth.

I realized that, instead of waiting for someone else to decide this was a worthy task to take on, I needed to head up the effort. After all, Lucy has helped me nearly all my life as I share in my latest post over at CreakyJoints.

I hope that you’ll join me in signing and sharing this petition asking for Lucy’s rheum battles to be included in the upcoming film. I’m sure that Cate Blanchett would do an amazing job of portraying the pain we all face every day.

 

How chronic illness is a bit like Jurassic Park

Posted on by Grayson

When you’re first diagnosed, you think that you can handle anything still. Instead of taking advice to be still and rest, you try to attack things head on. You have something to prove to yourself.

But then you learn what it’s really like from Mr. DNA.

Having this thing that is so intent on causing damage is scary, even if it’s just breathing into the glass.

Most of the rest of the time, I think we’re more like the dinosaurs than the humans… When you learn about what the illness can do, you get into attack mode.

You’ll start on a medication and feel great.

But then…

You feel like you’re being torn apart…

And you quickly realize you need to move to a different medicine because you wake up too stiff to move. But you decide maybe the medicine is what’s making you sick, so instead you decide to go all natural…

Against your doctor’s thoughts…

You think things are going well until the humidity changes.

And you’re fucked again… So you go back to your doctor.

You learn about all the medicines you can take. You read the side effects and what these drugs are made of. You pick one and start running with it.

You don’t get too scared when you have a minor flare up.

There ends up being a pretty good fight between you and this flare. Luckily your monster friend prednisone is here to help.

You beat it.

You know the cycle will likely continue. You’ll have to gear up for more changes and future fights.

For now, you’ll give yourself a break on the bad times, enjoying the good times maybe a little too much.

 

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.

Movie Review Monday: Inside Out

Posted on by Grayson

Over the fourth of July weekend, T and I went to see Disney & Pixar’s latest venture, Inside Out. It’s about a girl named Riley whose family moves to San Francisco from Minnesota and how she copes with the change… but in a unique way. See, they show the primary emotions that guide us – fear, anger, disgust, sadness, and joy – as tiny little people inside our brains.

It’s a great film. It’s silly but endearing and teaches you something. Joy and Sadness don’t get along well and Joy basically controls Riley. After the move, Sadness goes a little haywire… and she and Joy wind up lost inside other parts of the brain.

I found myself connecting a little too much with Joy.

And T found himself identifying with Sadness.

My internal reaction to that?

 

Nah, I figured it out when he did mostly.

Joy learns by the end of the movie that Sadness has a place and strengths too – and that Riley needs Sadness so that she can have Joy. It was an awesome movie, and you should definitely see it like yesterday.

It was a great way to explain the necessity of all our emotions and how important it is to let yourself feel them. It wasn’t a bad way to explore depression either. The coolest thing about it is that there is science to back a lot of this up.

I get overly emotional at the movies, especially kids ones for some reason. I don’t like it, but I let myself feel the sadness throughout this movie. It very much helped me to quickly process the things I’ve been through in the last few years. I used to deny my sadness, then I let it take over causing horrible depression and anxiety (thanks Fear!).

I recognized that always using joy for me was a coping mechanism for what I grew up in. I needed to be super positive or I wasn’t going to survive. Now that I’m an adult and on my own, I can allow myself to process each emotion. They each have their place.

Disgust helps me try to look good and fit in.

Anger helps protect me. Honestly, so does Fear.

Sadness… She helps me process what I’ve been through.

And Joy? She helps me be me. I still probably need her the most, but each of these emotions is important in their own way.

What emotions do you feel are in charge of you? And which do you need to work on allowing?

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.

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.

 

Terminology Tuesday: cytokines

Posted on by Grayson

Cytokines are crazy little buggers.

Basically, cytokines are molecules or proteins that help communication in your immune system. If you scrape a knee, for example, the pro-inflammatory dudes say “HEY YOU GUYS” and get cells moving to help protect and heal the area.

Cytokine is basically the umbrella term, with lymphokines, interleukins, TNF, and chemokines included among others as more defined types.

This could get very technical very quickly, but I want to keep it basic. These terms aren’t easy to understand sometimes and, to be honest, it could take a long time to really learn everything there is to know about cytokines.

These are cells related to an inflammatory response, so if you have certain diseases these guys aren’t always helpful. However, they can and have been manipulated to create some of the medications to treat autoimmune or autoinflammatory diseases. For example, we have TNF alpha inhibitors like Enbrel and Humira that suppress that specific cytokine to help lower inflammation in the body. Actemra similarly suppresses IL-6.