#ra warrior

[acheybreakyjoints]

Made a shirt for RA awareness. This comes in a bunch of diffrent shirt styles, stickers, bags, pillows, etc. Please consider purchasing it! Every little bit goes to making sure me and my child have a comfy life while I fight this illness!

It can be found here on my redbubble!

[major-artery]

February 2nd - Rheumatoid Disease Awareness Day

TW: Medication, needles, blood, pain.

<I actually made this post last year on Facebook, but have updated it for today.>

Today is Rheumatoid Disease / Rheumatoid Arthritis Awareness Day. You are in for a long read; feel free to skim through, read the entire thing, or skip it entirely. There are times it may be “TMI”, but I feel it’s all a necessary part of my journey. 

A lot of people know, a lot of people don’t. I’m sure my people knows at this point, but I have this “invisible” disease. I have been officially diagnosed for... wow, how long has it been? At least five years. I tested borderline for JRA when I was young, but drastic measures / hard medications were not encouraged because I was a kid, maybe it was a phase, maybe it would pass. 

It didn’t. I’ve been suffering with it silently for most of my pre-teen to adult life.

When you get sick, you go to the doctor; you’ll get some antibiotics, maybe a cough syrup. They’ll tell you take it easy, and in a few days you’ll be better. You will never hear those words as someone with RD/RA – or most invisible illnesses, for that matter.

At my first Rheumatologist appointment, I didn’t know this. I had come to see the Rheumatologist after a hospital visit; I’d had debilitating pain in my knees and ankles – they were so swollen I couldn’t move and the throbbing was agonizing. As I sat in the office, the doctor assessed me the best she could – asked me all the personal questions, gave me a physical, squeezed my joints, and checked my blood.

There was no immediate diagnosis. She didn’t want to assume until there was nothing left. I was sent for more blood work, x-rays, and thrown on prednisone. We discussed the possibility of other medications that may be needed down the line – their positives and their negatives. It mostly went in one ear and out the other side. All I kept thinking was that it would be over soon, I would be “normal.” 

While I was on the prednisone I felt like I could bench a tank, but it also made my sick to my stomach. My next visit to my doctor did not go as I planned. Far from it, actually… I felt I had made progress, but my blood work showed degradation. There was more inflammation in my blood than before – even though the prednisone felt like it was helping, I was getting worse. By this point I had been tested for many different things, all coming back negative.

The official diagnosis came – I had Rheumatoid Disease. I had done some research on it, and through work I had learned a lot about it and the different types of drugs that are on the market. Everything I had ever heard didn’t matter though. Now I was the one wearing those shoes.

My Rheumatologist asked me if my husband and I were planning to have kids. “One day, I’d like to, sure.” The whole reason why she was asking was because she was going to put me on Methotrexate (MTX.) It’s a drug that is used in the treatment of patients going through chemotherapy – it takes your immune system from “hero to zero.” What I learned was the real truth about RD/RA – that your immune system has gone “haywire” and it views your joints (and at times other parts of your body as well) as an infection, something that needed to be illuminated. This is what causes the swelling and painful joints. You can’t have kids while you’re on these powerful drugs.

All of a sudden, in the span of ten minutes, I could no longer have children (unless I came off my medications for at least six months, would mean I would be in pain,) I could no longer go to hospitals to visit sick friends and family without it being a detriment to my health (or be around anyone sick for that matter), that a common cold could actually land me in the hospital (and has). Hand sanitizer, religious hand washing, and birth control were absolute musts.

--Medication Rant Here--

Bi-weekly visits to the Rheum began with repeated blood-checking. The small dose of MTX was not working efficiently. I was bumped from 4 pills a week to 6, then from 6 to 8 (a “maximum” dosage.) More visits, more unfortunate news. My doctor started me on a combination therapy of MTX and an injectable medication – Humira.

Six months passed, things seemed to be working well with Humira. My poor husband – as much as I was suffering, I put the pressure on him. I found that when it came time to give myself the injections I just couldn’t do it. I couldn’t bring myself to press the plunger on the auto-injector. (As an aside –the auto-injectors look like really thick pens. You push the trigger button on top, and it plunges the needle into your skin and automatically administers the entire dosage. Pictured above.) The loud click scared me, and the pain of the medication being administered so quickly by the syringe scared me even more. Like clockwork when it came time for the next dose, I’d go into a full meltdown and anxiety attack. I found myself literally biting onto pillows, crying my eyes out, and begging him to not do it. It sometimes took hours for him to talk me down. I was hysterical and inconsolable. 

Almost a year after starting, I was taken off of MTX and left on Humira. Blood work throughout these passing months showed there was no real improvement. Once my prescription ran out my Rheum wanted to move me onto a different biologic / DMARD (disease-modifying anti-rheumatic drug). She wanted to move me onto Enbrel. I had heard nothing but positive things about Enbrel, and was excited to begin the treatment.

My doctor’s office called me while I was at work – my insurance would not cover the Enbrel, and I had to come in to discuss other treatment options. I was heartbroken. I remember going into an empty office in my building to cry it out. I had finally convinced myself that even though the idea of being on another auto-injected medication scared me, finally having peace from pain overtook it. Onto the next medication, I guessed.

The next time I saw my rheumatologist, we discussed something a new drug I hadn’t heard of but had been on the market for a long time. I was beginning to feel like a lab rat. I started Cimzia soon after – which was different than the auto-injectors I had been used. This was a manual plunge-syringe. The syringes come pre-filled and capped, I just needed to remove the cap, stab, and inject.

I actually took a liking to the Cimzia. I gained a lot of confidence in giving myself the two doses, one in each leg, because I could control how I “stabbed” myself with the needle, I could control how fast I pushed the plunger down and administered the medication.

But like the Humira, the Cimzia worked for a short amount of time then became ineffective. I was switched to Xeljanz – a twice a day pill instead of a bi-weekly injection. I’d found that I’d become more “tired”, lethargic even on this medication. It helped keep the swelling and the pain away for the most part. Just as with the MTX, Humira, and Cimzia, after almost a year the symptoms were becoming worse again. I was taken off of Xeljanz, and switched back onto an autoinjectable medication. 

I had to fight my insurance for Enbrel. This time I was going to get it. I spent hours on the phone, hours in my doctor’s office. I cried, I got angry. My insurance was still insisting I hadn’t “failed” on enough medication to “qualify” for Enbrel. 

After much perseverance, I am on Enbrel today. I have been on it a few months. It’s another auto-injector. My husband has to do my shots for me, because I have an uncontrollable twitch reaction to rip the pen away when the pain starts. But I don’t have the panic attacks anymore. It’s like I’ve become used to knowing it’s going to hurt, and it’s going to suck, but that’s just the way it is. My thighs are covered in bruises from the harshness of it. The injection sites swell and itch. More than once I think we’ve struck a vein because of the amount of blood that seeps out when the needle is removed. That always sucks. 

--End Medication Rant--

I was so angry with the world when I got my diagnosis. I was angry that some people didn’t seem to understand what I was going through was serious. “Oh, at least it’s only Rheumatoid Arthritis.” “You can’t have that – you’re not old…” I exhausted so much time and my precious energy being upset at things that were out of my control. Suddenly everyone was an expert in my illness, everyone know what could “cure” me – miracles.

When someone asks me how I’m feeling, I have to go through an internal monologue of “Do you actually want to know how I’m feeling? Do you want me to put that burden on you?”

I go through periods of guilt when I feel helpless; it makes me upset and makes me feel lazy when I ask my husband to grab me something from the fridge, to cook and clean up afterward, or sometimes (which hasn’t happened in a long time) to cut up my food for me. There are times where just putting on pants is a challenge and I have to ask someone to do the button for me. It’s embarrassing, and it’s heartbreaking.

I recently wrote a letter to myself – and I think a lot of people with invisible illnesses can relate.

“Dear Jessi,

It’s not the end of the world, I promise. I need you to take a deep breath, and really read what I’m about to write to you. Wipe your tears – wipe them off on your sleeves if you can’t reach the tissues, maybe even a pillow. Get comfy, because shit is about to get real.

This isn’t your fault. There is nothing you could have done to prevent this; your body was basically on a self-destruct timer with no wires to cut to stop it. You did not do anything to deserve this. People have crosses to bear – this is yours.

There will be people in your life who won’t understand what you’re going through. You can try to educate them, but sometimes you have to just turn the other cheek. You will make plans, and just as quickly you will cancel them. It is out of your control. Stop being embarrassed. Ask for help. Let people think whatever they want to think, and fuck’em if they don’t want to be compassionate.

They’ll still see you as the loveable weirdo, a little ditzy at times, maybe a klutz who obsesses way too much about RPGs. None of that changes because of your RA.

I mean what I’m about to say in the most positive way possible: you will -never- be cured. I’m going to be blunt about it because no one else will be. But you’ll persevere – you’re a boss-ass bitch. Your pain will be managed for most of the time. I’m not saying it won’t get bad, because it will. And you’re allowed to cry.

You are not the person you were a few years ago. You have all these rules to live by, and you’ll be worried that you won’t be able to go through with plans. There will be tools to help you, even if it’s a wheelchair.

IT IS OKAY TO NOT BE OKAY. Do NOT let anyone tell you otherwise. There will be days where you will roll over to turn off your alarm and you can’t. Don’t panic – take the time you need to get mobility back in your joints. When you’re out, use your handicap placard. You’re suffering. Do not let the dirty looks or comments sway you.

Appreciate your husband a little more every single day. He’s there for you – even if he’s pestering you about your medication, when your next doctor appointment is, or where that bruise came from (followed shortly by poking it.) You may not be able to keep up at times, and he will always change his pace for you.

Have you used all of your spoons today? I think you did; you probably over-extended yourself, and you’ll regret it tomorrow. But are you happy now? Then it was worth it.

Most importantly – at heart, you’re still you, even if your body is weird as fuck. You are not your illness. You are not any less of a person.

I love you. You should love you, too.”

So, this is me. Today I do my best to educate people on what I live with. Welcome to my world. Please, ask me questions, I may not have an answer, but I may have an experience. I’m a member of the #cureArthritis squad – and my goal is to spread information about my disease.

Thank you for taking the time to read; please consider making a donation toward RD/RA Research. It is one of the least funded research topics in the United States. And please feel free to share this post. <3

https://www.curearthritis.org/sponsor-specific-research/

[rawarriorprincess]

Fingers

My fingers are aching, bone deep and sharp, tonight Gotta love winter

[major-artery]

Brian tried to help make me feel better by covering me in blue-ish stuffies. Ps. It helped a little. The flare settled.

[major-artery]

Dear tumblr

I did not have a favorable visit with my rheumatologist today; please send me Chocobros, Squallies, Trash Granpas, corgis, and birbs. They help. :x Much love.

[major-artery]

So - warnings, I guess. If swelling bothers you, go away? I've been struggling since this past Friday. Most of my friends know I suffer with an invisible illness - Rheumatoid Disease. Friday I was hit with a painful flare up and it has gotten progressively worse each day since. I actually have very nice ankles and feet, and meaty calves from dance. But the swelling has become so bad that it's consumed my entire left leg, ankle, foot, and spread to my toes. You can see the top of my foot has domed. My right leg is bad, but not as much as my left. (It is so swollen it jiggles. Fucked Up.) My hands are also swollen and aching. I had to take off my wedding bands to be quasi comfortable. I'm fortunate in having a strong will. I will myself to get out of bed, to wash my hair, to button my pants, to fasten my bra, to drive to work and take notes in a meeting. But it exhausts me so much to do these things, and then I get depressed when my husband has to help me take my clothes off, brush my hair at night, and help me get into bed. So to my friends - I love you. Please stick with me. I'm trying my best but I haven't felt social. I've been in bed except for when I've forced myself to go to work or I've tried to be out in public. I'm unhappy but I'm trying to get through each day hour by hour. I ask for your patience and understanding. And I ask that you not judge people who use their disability placards - especially when you can't see anything wrong.

[major-artery]

Today is Rheumatoid Disease / Rheumatoid Arthritis Awareness Day. You are in for a long read; feel free to skim through, read the entire thing, or skip it entirely. There are times it may be “TMI”, but I feel it’s all a necessary part of my journey. <3 

I’m sure everyone knows at this point, but I have this “invisible” disease. I have been officially diagnosed for a few years at this point, but tested borderline for JRA when I was young – I believe I’ve been suffering with it silently for most of my teenage and adult life.

When you get sick, you go to the doctor; you’ll get some antibiotics, maybe a cough syrup. They’ll tell you take it easy, and in a few days you’ll be better. You will never hear those words as someone with RD/RA – or most invisible illnesses, for that matter.

At my first Rheumatologist appointment, I didn’t know this. I had come to see the Rheumatologist after a hospital visit; I’d had debilitating pain in my knees and ankles – they were so swollen I couldn’t move and the throbbing was agonizing. As I sat in the office, my doctor assessed me the best she could – asked me all the personal questions, gave me a physical, squeezed my joints, and checked my blood.

There was no immediate diagnosis. She didn’t want to assume the worst until there was nothing left. I was sent for more blood work, x-rays, and thrown on prednisone. We discussed the possibility of other medications that may be needed down the line – their positives and their negatives. It mostly went in one ear and out the other side. All I kept thinking was that it would be over soon.

While I was on the prednisone I felt like I could bench a tank, but it also made my sick to my stomach. My next visit to my doctor did not go as I planned. Far from it, actually… I felt I had made progress, but my blood work showed degradation. There was more inflammation in my blood than before – even though the prednisone felt like it was helping, I was getting worse. By this point I had been tested for many different things, all coming back negative.

The official diagnosis came – I had Rheumatoid Disease. I had done some research on it, and through work I had learned a lot about it and the different types of drugs that are on the market. Everything I had ever heard didn’t matter though because now I was the one wearing those shoes.

My Rheumatologist asked me if my husband and I were planning to have kids. “One day, I’d like to, sure.” The whole reason why she was asking was because she was going to put me on Methotrexate (MTX.) It’s a drug that is used in the treatment of patients going through chemotherapy – it takes your immune system from “hero to zero.” What I learned was the real truth about RD/RA – that your immune system has gone “haywire” and it views your joints (and at times other parts of your body as well) as an infection, something that needed to be illuminated. This is what causes the swelling and painful joints.

All of a sudden, in the span of ten minutes, I could no longer have children (unless I came off my medications for at least six months, would mean I would be in pain,) I could no longer go to hospitals to visit sick friends and family without it being a detriment to my health (or be around anyone sick for that matter), that a common cold could actually land me in the hospital. Hand sanitizer, religious hand washing, and birth control were absolute musts.

--Medication Rant Here--

Bi-weekly visits to the Rheum began with repeated blood-checking. The small dose of MTX was not working efficiently. I was bump from 4 pills a week to 6, then from 6 to 8 (a “maximum” dosage.) More visits, more unfortunate news. My doctor started me on a combination therapy of MTX and an injectable medication – Humira.

A few months passed, things seemed to be working well with Humira. My poor husband – as much as I was suffering, I put the pressure on him. I found that when it came time to give myself the injections I just couldn’t do it. I couldn’t bring myself to press the plunger on the auto-injector. (As an aside –the auto-injectors look like really thick pens. You push the trigger button on top, and it plunges the needle into your skin and automatically administers the entire dosage.) The loud click scared me, and the pain of the medication being administered so quickly by the syringe scared me even more. Like clockwork when it came time for the next dose, I’d go into a full meltdown and anxiety attack. I found myself literally biting onto pillows, crying my eyes out, and begging him to not do it. It sometimes took hours for him to talk me down.

Through the months, almost a year, I was taken off of MTX and left on Humira. Blood work throughout these passing months showed there was no real improvement. My prescription ran out for it and my Rheum wanted to move me onto a different biologic / DMARD (disease-modifying anti-rheumatic drug). She wanted to move me onto Enbrel. I had heard nothing but positive things about Enbrel, and was excited to begin the treatment.

My doctor’s office called me while I was at work – my insurance would not cover the Enbrel, and I had to come in to discuss other treatment options. I was heartbroken; the idea of being on another auto-injected medication scared me, but the idea of finally having peace overtook it.

The next time I saw my rheumatologist, we discussed something a new drug I hadn’t heard of but had been on the market for a long time. I was beginning to feel like a lab rat. I started Cimzia soon after – which was different than the auto-injectors I had been used. This was a manual plunge-syringe.

I actually took a liking to the Cimzia. I gained a lot of confidence in giving myself the two doses – because I could control how I “stabbed” myself with the needle, I could control how fast I pushed the plunger down.

But like the Humira, the Cimzia worked for a short amount of time then became ineffective. I was switched to Xeljanz – a twice a day pill instead of a bi-weekly injection. I’ve found that I’ve become more “tired”, lethargic even on this medication. It helps keep the swelling and the pain away for the most part. We’ll see where it goes in the next few months.

--End Medication Rant--

I was so angry with the world when I got my diagnosis. I was angry that some people didn’t seem to understand what I was going through was serious. “Oh, at least it’s only Rheumatoid Arthritis.” “You can’t have that – you’re not old…” I exhausted so much time and my precious energy being upset at things that were out of my control. Suddenly everyone was an expert in my illness, everyone know what could “cure” me – miracles.

When someone asks me how I’m feeling, I have to go through an internal monologue of “Do you actually want to know how I’m feeling? Do you want me to put that burden on you?”

I go through periods of guilt when I feel helpless; it makes me upset and makes me feel lazy when I ask my husband to grab me something from the fridge, to cook and clean up afterward, or sometimes (which hasn’t happened in a long time) to cut up my food for me. There are times where just putting on pants is a challenge and I have to ask someone to do the button for me. It’s embarrassing, and it’s heartbreaking.

I recently wrote a letter to myself – and I think a lot of people with invisible illnesses can relate.

“Dear Jessi,

It’s not the end of the world, I promise. I need you to take a deep breath, and really read what I’m about to write to you. Wipe your tears – wipe them off on your sleeves if you can’t reach the tissues, maybe even a pillow. Get comfy, because shit is about to get real.

This isn’t your fault. There is nothing you could have done to prevent this; your body was basically on a self-destruct timer with no wires to cut to stop it. You did not do anything to deserve this. People have crosses to bear – this is yours.

There will be people in your life who won’t understand what you’re going through. You can try to educate them, but sometimes you have to just turn the other cheek. You will make plans, and just as quickly you will cancel them. It is out of your control. Stop being embarrassed. Ask for help. Let people think whatever they want to think, and fuck’em if they don’t want to be compassionate.

They’ll still see you as the loveable weirdo, a little ditzy at times, maybe a klutz who obsesses way too much about RPGs. None of that changes because of your RA.

I mean what I’m about to say in the most positive way possible: you will -never- be cured. I’m going to be blunt about it because no one else will be. But you’ll persevere – you’re a boss-ass bitch. Your pain will be managed for most of the time. I’m not saying it won’t get bad, because it will. And you’re allowed to cry.

You are not the person you were a few years ago. You have all these rules to live by, and you’ll be worried that you won’t be able to go through with plans. There will be tools to help you, even if it’s a wheelchair.

IT IS OKAY TO NOT BE OKAY. Do NOT let anyone tell you otherwise. There will be days where you will roll over to turn off your alarm and you can’t. Don’t panic – take the time you need to get mobility back in your joints. When you’re out, use your handicap placard. You’re suffering. Do not let the dirty looks or comments sway you.

Appreciate your husband a little more every single day. He’s there for you – even if he’s pestering you about your medication, when your next doctor appointment is, or where that bruise came from (followed shortly by poking it.) You may not be able to keep up at times, and he will always change his pace for you.

Have you used all of your spoons today? I think you did; you probably over-extended yourself, and you’ll regret it tomorrow. But are you happy now? Then it was worth it.

Most importantly – at heart, you’re still you, even if your body is weird as fuck. You are not your illness. You are not any less of a person.

I love you. You should love you, too.”

So, this is me. Today I do my best to educate people on what I live with. Welcome to my world. Please, ask me questions, I may not have an answer, but I may have an experience. I’m a member of the #cureArthritis squad – and my goal is to spread information about my disease.

Thank you for taking the time to read; please consider making a donation toward RD/RA Research. It is one of the least funded research topics in the United States.

https://www.curearthritis.org/sponsor-specific-research/

[artofemmanation]

3 Things

I have been tagged by @justadram to prattle on about “Three things about myself...” so here goes...

- I was diagnosed with Rheumatoid Arthritis last summer, just a few months after we all disappeared into Lockdown.  I had been having wrist pain and frozen shoulders for months prior to that, but I think the stress of working full-time while home-schooling during an intensely scary period of time is what caused my RA to seriously manifest itself.  I don’t like thinking of myself as an “RA Warrior”, but I can see how that would be helpful to some people.  Personally, I prefer the term “Rheummates”.  ;-)

- Although being a Lead Animator is how I pay my bills, I have a Fine Art background, and I’ve been thinking about getting back into that.  This is totally ironic because my experience in Art School was thoroughly discouraging and is what made me pivot into Animation in the first place!  I’ve enjoyed doing Fanart, and my IG account is filled with fun but non-comital experiments, but it’s time I got serious about this.  My dream is to one day have a cohesive body of work and a professional-looking artists’ website, if for no other reason than to proclaim to the Universe “I’m treating myself - and my art - with respect”.  

On to less weighty matters... 

- My new Celebrity Crush is Douglas Fairbanks Jr. in “Our Modern Maidens”.  Watch it and tell me you don’t see shades of Dan Stevens as Matthew Crawley  in Downton Abbey!  I await your reviews...!

To follow me down this rabbit hole, I nominate: @the1920sinpictures, @arabellabeaumaris, and @womeninarthistory.  Cheers!  :)