My new “normal”: life with Rheumatoid arthritis and fibromyalgia

It’s been about two weeks since I was diagnosed with Rheumatoid arthritis and Fibromyalgia however I was looking through medical records and I’ve actually had arthritis for sometime and I just honestly “worked through” the pain and flare ups.

You see I’m a disabled veteran. However that’s not something I like to talk about because awful things happened to me in the military and I like to forget that time all together.

When I came home from the Army I could barely walk and I didn’t want to talk about what happened to me.

My grandfather helped my to benefits and I was just grateful that someone believed me.

I didn’t really read the ENTIRE package had I done so..

I would had saw that part of my disability which is 40% is BONE INFLAMMATION.. THERE WAS PROOF IN MY BONES!

I was just happy to be having benefits for me and my child forever!

I was happy to have HEALTH CARE.. I really didn’t understand my diagnosis at the time.. I wasn’t even a nurse myself.

I honestly had no idea what the giant packet delivered to me meant.

No one called to explain that I had Rheumatoid arthritis and I probably should be more gentle with my body.

No called to find me a Rheumatologist.. nothing.

No one told me my body was aging rapidly… nothing .

I wasn’t told about the effects of stress on my young body.. I was simply given a packet and excited about the new “benefits”

I can be honest, I spent the better part of Friday bitter at the Army and the V.A for not explaining to me that I had a serious medical condition, or at least having a doctor follow up and explain.. but I suppose that’s my job as the disabled veteran but hindsight is 2020.

I honestly only have myself to blame.. they did inform me and I didn’t read all of my mail entirely.

I was a kid.. with a kid.. who recently lost my dreams but this time.. I didn’t just wallow in my sorrows.

I did something about it.. my “New normal” doesn’t mean I’m a bed ridden lump.

I got up and reopened my v.a claim and this time I plan to 🗣READ THE WHOLE PACKET.

A lot has changed since my time in service I even spoke up about my assault because.. who am I protecting? No one protected me🤷🏾‍♀️ I decided to use my voice.

To speak up for myself, to get help, to stop the nightmares. There is only so much mental weight a person can handle.

After losing an organ to stress you realize internalizing stress is toxic and dangerous and I just don’t want to feel that pain anymore.

I’m in physical pain 24/7.. I don’t want to be in emotional pain anymore as well.

I couldn’t believe I just kept marching…. not this time. I fought for myself and I was proud.

Medications arriving made it real

As I was Healing from surgery medications for my newly diagnosed Rheumatoid arthritis and Fibromyalgia began to arrive and it everything started to sink in.

I chuckled to myself because I was about to smell like menthols and I didn’t even care because the creams felts so good!

I locked myself in the room and began to just watch YouTube videos of young women sharing journeys with rheumatoid arthritis and fibromyalgia.

I felt so many things.. some people weren’t believing that was my diagnosis but it was in my charts, in my bloodwork and several doctors had called the house saying it so..

I felt like I was constantly trying to prove I was sick but I mean I was hunched over, having surgery, vomiting everyday, constantly in pain, positive test and X-Rays but I digress.. I got to the point where I told myself

“No one is in your body but YOU! If no one believes you but YOU.. that’s really all you need”

I had to repeat that myself CONSTANTLY

I decided to create a support group on Facebook for young women with Chronic illnesses that just wanna bitch about their aches and pains.. and everything else because I began to realize in the two weeks I’ve diagnosed and couple months I’ve actually actively taken time to be still and listen to my body and have flares it’s hard.

I created “The Angry Unicorn Society”

So far it’s just me.. but I figure there has to be more young people with chronic illnesses that are moms..

I realized I didn’t have “the flu” those were flares!

I just been pushing myself to keeping going… but why though?

I swear I’ve been trying to please my parents (RIP) and I need stop or I’m going to join them. That’s facts.

Hard facts but facts.. I’m too young to have all these health problems and I need to take better care of myself.

I finally realized that about a month ago.

I’ve been so stressed out, I’ve allowed so much abuse to occur people do understand that stress can kill you and people with fibromyalgia and Rheumatoid arthritis have to rest and relax.. so that’s what I’m doing lately…

Or at least attempting to do…

It’s hard.

I can admit. I’m a recovering workaholic.

I’m addicted to jumping when EVERYONE says jump and I need to stop for my own good.

I’ve started to pamper myself more..

I kind of have to, I only have enough energy to like shower or make a meal..

I used to wonder why I was tired all the time, why my body hurt.. now that I know and I have a reason to rest and take care of myself I do and I decided to treat myself like a damn golden girl!

It’s not my fault I’m a young person with an old person body.

I now have the responsibility to take care of myself the best can and keep myself comfortable.

I do have like a billion doctors appointments now, I have a rheumatologist now, several creams, I’m way more serious about yoga.

My doctor from the v.a, my outside insurance and psychiatrist had to compare medication list

(I only take 3 pills I don’t want to be a zombie.. I have babies and as it is I’m all ready in bed a lot, I don’t want them to see me popping pills so I make sure every pill has a purpose.. so every Dr has to get to know each other so I have to sign releases it’s a battle)

Anywayyyys my they all decided I should try Cymbalta to get out bed..

I was like “I’ll try anything to get out of bed… I’m sooo tried”

I feel like there’s sandbags on my arms after I shower and there’s someone beating my tailbone with a baseball bat when I stand longer than 10 minutes.

Then when I stand too long.. tingles shoot down my arms and legs.. oh and I can’t turn my head side to side without the tingling sensation shooting to my tailbone and heels and hands.. it was a small thing at first I could ignore it then it became like FIRE and I had to tell and seriously I woke up one day

And I could NOT WALK!

I was like I should go to the hospital.. but I was so scared my blood work was going to come back normal I didn’t want to go… but I had to 😅

I have serious PTSD about hospitals because I was treated poorly at a hospital due having pancreatitis.

I was probably having a flare!

I went to v.a Loma at first I admitted. My white blood count was almost 20!

But they assumed my pancreatitis was due to alcoholic pancreatitis not because of rheumatoid arthritis and they sent my home to suffer… they didn’t even give me any pain medication because they assumed I was an addict.

I ended up having to go to a civilian hospital for treatment. That experience made me feel like no one was going to believe me.. even if I had labs to prove I was sick.. doctors still would do what they wanted.

It was so messed up..

That night they could have diagnosed me with rheumatoid arthritis and fibromyalgia.

Instead they judged me.

They asked my husband if I was an alcoholic over and over instead of sending me for proper testing.

I sat outside in the cold vomiting on myself with a temperature of 100.2 texting my friends who were nurses and nurse practitioners what could make my liver, pancreas and gallbladder swell.

None of use thought of Rheumatoid arthritis because “I’m only 35.. I’m too young to have arthritis!”

That was the last thing on our list!

It was right there.. dancing in faces!

These couple weeks I have thought about the moments in my life where I have thought I was sick and it has in fact been flares and I realize.. I’m going to be just fine.

My new “normal”

I have to face the facts.. I need creams.. Epsom salt baths (in 2 weeks.. gotta wait till my belly heals) slower walks… that cart at Walmart (no shame in my game)

It feels likes a grown man is doing the cha-cha slide on my tailbone if I stand too long 🤣

I’m not big on narcotics… I’m a herbal girl

I’ve been fighting my pain with ibuprofen and weed.

I don’t want to be different.. I just want be who I was prior to waking up and feeling like I was in a car accident without being behind the wheel.

I can’t even drive right now.

I’m in too much pain and I’m far too tired. Even my skin hurts sometimes.. it’s so strange.

My husband has to drive me or my nana has to pick me up.. it’s kind of embarrassing, I hate feeling like a burden on everyone.

My entire life feels life it changed and all I did was wake up.

I’m trying to fight for every bit of normalcy I have left and I’m going to win!

I realize I will never be who I was and I think that’s great. I want to be better.

I have to put myself first, my health is a priority now, it wasn’t before because I was young and indestructible.. I was “superwoman” well I guess my bones have proven I’m just a woman and that fine too I do some super fuckin things and it’s ok to rest.

We don’t have to be “Super-moms” or “super- wives”

“Super-people” don’t exist Hollywood created them because our regular bones and dreams needed to escape our lives and play.

We needed to “Super-people” as a fantasy we didn’t have to become them forever.. it was meant to be a goal! Just something to look at while you’re bored.. like mental masturbation.. you weren’t supposed be it.

Remember that… we don’t have to “super” regular ass is enough 🤷🏾‍♀️

If you’re looking for a some cool pages to follow that are young women with chronic health issues I found these last night when I couldn’t sleep 😬 I found @thespooniesisterhood it’s an Instagram for young women with chronic illnesses it’s very colorful and inspiring!

I spent a couple hours just reading the stories and looking at the pictures interacting with the brave young women in the post. It was really awesome to see these women are NOT held back by their diagnosis honestly.. neither am I..

It’s an adjustment. I learned from @colourblind_zebra

And many of the other sites it’s all about finding support and people who believe in you..

if you find any more sites let me know but these two were really neat.. anyway.. Godzilla is waking up

Thank you for reading.. light and love to you ✌🏾🌈

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