Dear Diary,

Mood: apathetic.. But seriously trying to figure out my new life since my body decided to develop an autoimmune disease.

[scolilife]

Raynauds help

To my spoonies with Raynauds: Lately, my hands and feet have been getting really bad, like more purple and red than they ever have. My hands and feet fluctuate from burning hot (like searing hot) to so cold that they are numb. My hands are either bright red or deep purple. My doctor said there isn’t much she can do and it will get better during the summer but even in the hot weather, my raynauds continues to get bad. It’s at the point where my feet and hands constantly hurt and throb. Is this normal for someone with raynauds or should I ask my doctor to refer me to a specialist?

[ravens-cove]

[sailorheart]

Coincidence??

I have felt pretty good the past few days besides my usual pain and exhaustion. Late last night I started to feel super cold, like worse than normal. I had a bunch of layers on and two thick blankets and I was FREEZING. Slept like garbage and when I woke up everything was super achy. Even my muscles hurt to touch and I had a few other symptoms, I also noticed it started raining today.

I don't remember being like this during rain before but this is still a newly devolping thing. I know rain can make joints hurt but think maybe it's just a coincidence??

[crps-chronicpain-ptsd]

Todays affirmation -

Chronic pain problems •

[sailorheart]

My puppy decided he was going run out the dront door today. My legs and feet were already in a lot of pain but I had to try and run after him. Horrible idea because the rest of the day it's been excruciating to walk or even stand. Have to work 9 hours tomorrow and I can already tell it's going to kill me.

[littlemoonfae-deactivated202110]

Don't you just love it when you do one thing and pain keeps you up all night. Like thanks body I know food shopping is hardcore but a girl's gotta eat 🙈

[sailorheart]

I've been missing so much work because my body is throwing a tantrum. I'm worried about losing my medical insurance through work because of it and my bills. I'm just waiting for the Rheumatologist to call me.

Everything hurts, I can't even stand, dizzy, so tired. Stressed..

[sailorheart]

Pushed myself too hard yesterday at work.

Had to train some new hires yesterday so the day consisted of walking back and forth across the store and I probably used the stairs every half hour. Today my entire body aches horribly, no matter what I do there is no relief. Can't sleep due to the pain. I'll be hiding in my room crying, don't mind me.

[spooniestrong]

[sailorheart]

Excited to try out my new cook book!! Hopefully it helps manage my health a little better.

[brieflycleverspoons]

I'm hungry, but I'm also extremely nauseous, so I don't want to eat, but what if I'm nauseous because I'm hungry?

[sailorheart]

Good Morning friends!

What's everyone's experience with the malar/butterfly rash? I think I had my first one recently but not too sure. It looked like I had a light sunburn but had only been outside for about 10 minutes. It lasted for a few days and was only on my cheeks, nose, and a small patch on my arm. It felt kind of weird and warm to the touch, it also felt pretty sensative.

[sailorheart]

Guilt

I feel so guilty for being sick all the time.

I feel like I'm being a bad boss at work, for calling in sick a lot because I can't move or am vomiting. Job quality has been poor because I have to keep stopping because of pain or running to the bathroom.

Feel like I'm a bad friend because I forget to answer messages or space in the middle of a conversation even though I'm trying really hard to listen. Not answering because I'm exhausted and don't have the energy to talk.

Bad pet mom because I don't play with them like I use to, taking my puppy for a walk or to the dog park drains all my energy. Yet I want to do all those things with them.

A terrible wife. I know I've been neglectful and withdrawn, I just don't know how to operate like a normal human. Chores pile up, skipping meals, sleeping constantly, and laying there because it hurts too much to walk around. I'm not fun or bubbly anymore. I feel like a burden to him because of all these things and the medical bills piling up.

I spend most of my time researching everything I can to help me understand what's happening. No one else can see that anything is really wrong with me so they assume I'm faking it, lazy, or that it's all in my head. Not having anyone to really talk about how I feel or having a for sure diagnosis is killing me inside. "All the signs point to this but lets do more tests. I'm sure you have it though."

I want to sleep and cry all the time.

[sailorheart]

Did another follow-up with the doctor again today. I'm starting to show more symptoms towards Lupus so more bloodwork was ordered, need to make sure I'm eating, taking my medicine, and writitng everything down. He also said to avoid the sun but if I do go outside to have a parasol, sun hat, and or sunscreen.

I live in a pretty rainy/overcast area but does anyone have reccomendations? Also how did everyone's journey start out?

[sailorheart]

It's crazy how just in a month so many things in my body have changed. All these symptoms randomly popping up but I don't know if I should go to the doctor again or just wait to see if everything calms down.

I wish I knew someone who is going through this to know if I'm just crazy or if this is real. I feel so alone.

[laurenlassosthemoon]

In my feeling about my chronic illness today. Can anyone out there relate?

[seoulwave]

Me everytime I do hw