#tw venting

I just want to love and be genuinely loved so bad. 😞

tomorrow is shot day and i KNOW im gonna wake up tired and achey bc shot days always hurt (i have a weekly medication but im pretty sure my body metabolizes it faster than normal and it only really lasts for six days) and im already exhausted and hurting because of my fibro.

at least i hope its my fibro. i think its my fibro. the other possibility is that im developing a resistance to my medication already and i really dont want that to be the case.

So why do we not hold other people with lesser issues accountable for their actions when they have the same behavioral pattern?

Why is it that my grandpa can get away with breaking boundaries because "oh it's just his autism" when I know damn well I wouldn't be able to get away with the same thing even when I'm autistic too?

Stop the fucking double standard. If you know better, and you're in complete control over your actions, you don't have an excuse for shitty behavior. Even systems take accountability for the actions of other alters in their system when the actions aren't that alter's fault specifically. Why can other people not have that same level of responsibility when their own situation is far less complex?

Again, key emphasis here is 1) knowing better, 2) being in complete control of your actions, and 3) having the knowledge between right and wrong to discern your actions as wrong but 4) doing them anyway. Of course you should still take responsibility for things you do if you don't meet these criteria, but that's in a whole different wheelhouse than what I'm talking about and is much more morally complex and delicate. I have empathy and understanding for someone who's actively experiencing mania (especially when they apologize for whatever happened once they're in a more sound place of mind) than for someone who's just being an asshole and using their mental illness as a crutch to say "but oh, look at me, I'm just mentally ill!"

My ex sister in law, who had otherwise been hiding the fact my ex and her new man live with her and her husband and kids, the same man she was lining up while she was with me and claimed he was her "buddy" she met on the xbox and only her "buddy," finally decided she would post a picture of the entire ragtag gang out and about for 4th of July festivities. Which is odd, because up until this point she had been apparently pretty careful about not posting them and I might be wrong, but it feels like it was snuck in there as a dig at me. Like they're looking for a reaction.

I bit my tongue and I didn't comment or outright say what I would really like to say. I took one from the team and internalized it for now. I have too much going on in my personal life to worry about to get bogged down by instigators. I'm trying my best to protect my peace against people who hold obvious animosity towards me and not give them the reaction I'm sure they want. I don't want to set back my growth over people still doing childish high school crap for giggles.

Yes girlie, I saw my ugly slob of a replacement. Yes girlie, I saw my ex looking smug as all get out because she likely knew the picture was going to be posted and I'd see it. Do I care? No. I'm over the mindgames.

girl what ?

thats like saying its fine for them to treat my autoimmune disease with prednisone or mtor inhibitors bc they both work as immunosuppressants, which COULD technically help with my problem but wouldnt be as effective as the medication im currently on

do we not understand that drugs are targeted to treat specific diseases? do we not understand that diagnosis should ideally come before treatment to ensure that youre treating the RIGHT FUCKING THING? do we not understand that doctors cant effectively treat me for other issues if theyre not aware of the things im already facing? that not having a diagnosis for a physical issue could lead to other misdiagnoses or prescriptions of harmful medications that could interact with my issues?

now, mental health is its own ballpark and foregoing formal diagnosis can be valid in certain situations depending on whats going on and how you want it treated, but when it comes to your physical health, foregoing diagnosis is stupid at best and dangerous at worst. i cannot be treated properly for what i have if my care team doesnt know what the fuck is going on with me. my disease may be primarily rheumatological, but it has other impacts on all of my body systems because of the nature of the disease and the fact that the human body CANT BE FUCKING COMPARTMENTALIZED.

when you treat a disease, you are treating the whole person. medication or therapies for one body system will affect the rest of the body. the human body is a complex and wondrous thing, but it does not, has never, and will never fit in the boxes we assign to it. thats why my anatomy and physiology book opened with a disclaimer about how "this book is only accurate for about 70% of the world population because there are many things that can and do look different from individual to individual that cannot be covered in a book thats less than a million pages long" (paraphrased, obviously).

case in point: if i have what theyre treating me for and not something else, it can cause symptoms like nausea and vertigo, which are not typically considered rheumatological concerns. if i go to my pcp or my gastroenterologist and theyre not aware of how my disease impacts their field, they can prescribe medications or procedures that would have catastrophic effect on my body and they can misdiagnose what they see based on their own specialty instead of understanding that its a complication of my disease. i wouldnt receive proper care because they dont have the information needed to provide it.

and dont even get me started on the other effects of being undiagnosed. i am disabled. i require some degree of accommodations because of my disabilities. in order to get those accommodations, i have to be fucking diagnosed and have paperwork and notes from my doctor and a little sheet that says "yeah, im not faking it". my source cannot be "trust me bro", even if ive earned that trust, because that is not how our society works. its able-bodied until proven disabled, and i am not able-bodied.

theres also the matter of community. if i know what i have, i can seek out other people like me, and thats powerful. thats important. to me, community matters just as much as ada protection. it is so. fucking. isolating. to spend thirteen fucking years not knowing whats going on with your body when everyone else around you is normal and happy and fine. misery loves company, and i love finding people like me. i hate that they had to go through the same things, but i am so glad to not be alone.

diagnosis matters. for my records, for my medical treatment, for my accommodations, for my protection, for my sanity, for my safety, for my mental health, for my community, for my words. it is a tool, and it is powerful.

i know my diagnosis does not define me and that it wont magically make my problems go away, but it will help. being treated for the right disease will help. being able to park in an accessible stall on a day i can barely walk will help. being legally protected from being fired if i use assistive equipment/technology or dare to ask for a few basic accommodations will help. being able to talk to other people like me who have my struggles and understand my frustrations and can give me advice will help. being less alone will help. being validated will help. being equipped with words to explain whats going on with my body and how/why that impacts me will help. being treated effectively for the right fucking thing will help.

yes, my current medication is helping to some degree, but what if it could be better? it is not shocking that an immunosuppressant works against an autoimmune disorder. what i want to know and what i am frustrated with is wondering if its the right autoimmune disorder and the right medication and the right preparation for/projection of what my road might look like going forward. i do not want to try fighting a battle when im on the wrong continent, and it shouldnt be hard to understand that.