RedHeadedBitch's avatar

RedHeadedBitch

The Most Positive Influence
294 Watchers355 Deviations
37.2K
Pageviews
I love you guys.
        being here is hard.

        Still alive, just struggling
-See you sometime
Join the community to add your comment. Already a deviant? Log In
Philly was in the heart of the snowstorm over a week ago. It was a blizzard and we got over 3ft. I was outside during it and did not sleep over the course of those 3 days. My father worked down at the firehouse, and I had to keep his parking space (so he could get in and out while dealing with emergencies) cleared, along with sidewalks. This was EXTREMELY difficult due to the snowplows dumping the snow BACK INTO the parking space, which made a barrier TWICE, that was 4ft high, 9ft long of COMPACTED SNOW. The wind hit up to 40mph and I was actually knocked over when walking thru the snow, using a shovel as a walking stick (this I find hilarious). After shoveling more than 4x a day because our entire area has barricaded inside of their homes, the snow finally ended. However the day BEFORE the snow started I threw out my back carrying wet laundry. So doing all of this pretty much resulted in not moving for a week. I still feel awful now, things have only gotten worse, not better. I am still keeping up with my meds, however the corticosteroid inhaler affects my vision. Everything is blurry and extremely hard to focus on. Even for typing on this screen, or trying to read off my ipod. 

To add to the problem, my newest primary doc is out on leave, and my only option is seeing a temp, who after a very rushed visit, seems to not take me seriously. Even after showing her the PFT results directly (the test that shows my lungs function at 26%), and the chest xrays, she still seemed skeptical saying: "Your lungs sound clear." Yes yes of course they do, hence why my xrays are fine and I just explained everything the pulmonology specialist diagnosed, which is why I'm here because I need a pre-cert. I felt like I was being interrogated and taken for a joke, which wasn't very comforting, especially when she offered mediocre ideas that would be suited for an eight year old asthma patient, not someone struggling with restrictive lungs. I'm hoping she was just having a busy day.

I have a new CT scan scheduled and an appointment to speak with a rhuematologist about my bones/joints. I've been having a horrible time with everything. Every piece of me feels like it's being sawed into, and my toes/hands are especially problematic for the dislocations. I am hoping to get glasses this/early next month for distance, and later a second pair for "computer distance".  I do have a pair of reading glasses for up close, which seems to help a lot. My depth perception has also become worse (for those that didn't know I had barely any to start hahaha). 

Despite all this awful drama, I have managed to buy a box of new red hair dye (: I have some pictures to post from November, dec, and then after I dye it. (I've dramatically cut back on dying it due to these problems, but I cannot live in a world where roots are allowed to be showed, so I make sure to still bleach it monthly. It is currently blonde up top, with purple tails that have been there since October :P )


I wanted to give my few followers another update (because I don't speak with anyone in real life or anyone on here outside of here) so this is the only place to really keep in contact with you all.

I've been back and forth between visits again, however the majority of my time seems to be spent in bed. There are days I get up maybe once for a drink, and that's about it. I don't have the energy to do things (besides what HAS to be done), and I don't have the mental energy to do anything. I clean my room, I clean the kitchen, clean the bathroom, wash some dishes, and go back to my hibernating. I am still keeping up with guitar practice, but it is limited. I leave the house about twice a month. Ideally I would like to have at least a new diagnosis and meds before summer starts. I would like to have at least one good part of the year. 
Join the community to add your comment. Already a deviant? Log In

Hopeless.

3 min read
A letter came saying my insurance company will no longer cover my meds starting January. Not like I need them to LIVE or prevent esophageal cancer or anything.... OH WAIT! (obvious sarcasm).

I tested negative for everything tested on the blood test. Fucking NEGATIVE. This is the shit that pisses me off. You can have a 100% full diagnosis by MULTIPLE specialists for autoimmunity, and guess what? Your blood work says fucking negative. Why? Because medically it's 100% able to NOT SHOW ON BLOOD TESTS. Whoop de fucking do! (At least the lungs ordeal has been proven... that's one progressive step. But I still haven't gotten my CT scan thanks to the insurance and the script will expire soon).

It did show extremely low potassium. So with some supplements that might help lessen some of the pain that's been going on. "Some". "Some". As in, might help with the headaches and dehydration (but not the cysts ruptures or flares, or the plates shifting in my back), "SOME". 

BUT COME THE FUCK ON 

I can't get a mother-fucking goddamn break. God only fucking knows if I'm being taken seriously anymore. Not to mention my eyes are so damn bad I can't even read text-message sized posts, or focus on ANYTHING. (But can I get glasses? hahahaha nope!)

Pissed? No. I'm goddamn FURIOUS.

Going to see my DO doc next week hopefully.. only spoke to a nurse on the phone today.

I haven't been able to actually sleep in MONTHS due to this pain severity. 14gauge open-hole needles? No problem. Tattoos on bone? No problem. Keloids? Whatever. High pain tolerance? As high as it gets.
BUT:
The most I can sleep for is 2 hours. This shit is overwhelming. If I get in bed at 10pm, I'm awake till 10am. Get in bed 8am? Awake till 10am. I can't stand for longer than 4 hours. By 4 1/2 I'm seeing black and on the verge of passing out. By 4hrs 45mins I'm no longer able to stand. By 5 hours, I'm not able to STAND (or sit without elevation!!!) the FOLLOWING DAY. Do you realize how impossible it is to work like this?
I can't do anything. Guitar? Hands dislocate. Tried to cut my hair, hand dislocated. Laying down, toes dislocate. Muscle spams nonstop. Vision? So blurry I can't read, drive, concentrate, or focus on anything. (And I keep getting random allergic reactions from everything and anything, and have bulging rings in my esophagus).

I'm looking up therapists and the cost of them in the area. The gender dysphoria is to the point I wish I never knew this was even a thing (we're going on 6 years since I've learned the term here).
(And if I need to hear "GET A JOB" ONE MORE TIME I SWEAR TO FUCKING GOD)

Merry fucking christmas to me. Enjoy another goddamn year being a resident of hell.

Sincerely,
A chronically ill, gender dysphoric kid, who has 2 friends, no aspirations, zero things going for them, and is constantly faking it to 'make it' yet never leaves bed unless it's to clean or do laundry, and leaves the house once a week or once every other week at most,
Join the community to add your comment. Already a deviant? Log In
I had another set of blood work done on Tuesday, and my doctors office called today to let me know they received the results. Since I missed the call I have to call back tomorrow morning to see if they could fit me in for an appointment tomorrow or Thursday morning. The appointment will be about results, other medication (the current might be causing me issues with my sight), and some of the recent problems that have worsened/started. I'll post another journal about how it goes.
Join the community to add your comment. Already a deviant? Log In

Glass Hearts

2 min read
These are the hardest four years of my life,
They walk right by me heads turned with closed eyes.
They don't even see me.
At night in my house I'm still all alone.
This is not a home.
They don't even see me.

The scars on my body, they don't even bleed.
I never do this for me.
The scars on my body, they don't even bleed.
I only do this for you to see.

How am I supposed to see through your eyes when you never saw the stars were falling at your feet?

Is it a song? Is that what they need?
For so long I've tried to get them to hear me.
Picking and stabbing, their words feel like knives.
Tearing and ripping the seams of my life.

I've tried to convince them
Their words hurt like stones.
I just wish they'd just leave me alone.

I am on my knees.
I need you to hear to me.
I am on my knees.
Hear me, please.

How am I supposed to, to hear what you hear when you never heard the sound of our glass hearts breaking with every tick of the clock when you are gone?

(How am I supposed to see through your eyes?)

I know what you've been through,
This hell was my life.
You have to keep pushing,
I've seen through your eyes.

Your days are like pages,
The chapters unread,
You have to keep turning
Your book has no end

Glass Hearts - Of Mice and Men

Join the community to add your comment. Already a deviant? Log In
Featured

Devious Journal Entry by RedHeadedBitch, journal

Blizzards and appointments by RedHeadedBitch, journal

Hopeless. by RedHeadedBitch, journal

Devious Journal Entry by RedHeadedBitch, journal

Glass Hearts by RedHeadedBitch, journal