infused and bruisedd

sitting here getting my second ocrevus infusion and oddly enough i'm feeling sentimental. i have nothing to be sentimental about except for all the things that have changed or been taken from me. the last time i sat here i was shaking and trembling uncontrollably. i was so embarrassed because i ended up peeing twice and shitting once. and like, ya know they know lmao.

but what i remember most is that i felt better than i do now. maybe i'm remembering incorrectly and i should be more than happy with the condition my body is in right now. but either way, i felt better in my heart and mind for sure. i feel like the weight of all of this has started to wear me down. i'm so tired and i'm so tired of being tired and i'm so tired of telling people that i'm just...tired.

i have hope from my doctors and other testimony online that i will feel better and better after each infusion. unfortunately they are 6 months apart and the last month or two, the patients generally feel weaker, more malaise, more symptoms. which is very much in line with the experience i've had. i'm just not looking forward to a cycle where 2-3 months out of the year i just don't feel good. i should have had that damn imaging done!! i rescheduled my brain and spine MRI because i felt like a trash can that day. it just makes me nervous.

i'm just really looking forward to adjusting the next couple weeks toward feeling better than i have. i know theres lots of appointments and avenues, and even things i could be doing on my own, but...this is all so damn much to take in at one time. how am i supposed to be a perfect person on top of all of that? how am i supposed to live by a pristine budget, dieting, eating better, never slip up?? i can barely be a human right now. the amount of help that i've needed could not possibly be understood. i end up feeling so minimized by my parents, esp my dad. because he will remain so fucking disconnected from my situation and then all of sudden stick his head in with some opinions like he has any goddamn right. i mean, he sort of does. but mostly he just sends the checks, minds his business, and doesn't step to a single promise that was made to me this summer.

dad promised to create a trust in my name to support me, to help me purchase a home, and to come down and see me at least once a month. the trust has been completely ditched. talking about buying the house is like pulling teeth, and i've seen my dad one fucking time since i was discharged from the hospital. anyways -

i digress. parents are shitty. ms sucks. fingers crossed ocrevus gives me a few great months!

pn