eventually a day may come when a doctor finally says that they are willing to allow you to take a controlled medication (controlled by gatekeepers) on an ongoing basis for the chronic all over body pain you’ve been experiencing 24/7 for over 2 years now. this, after waiting 14 years for a doctor to take your pain seriously, you have tried everything else you could and could not afford.
twenty hour hours into the new treatment and you are experiencing zero relief (*) so you try to contact the doctor. the online messaging portal isn’t working after numerous attempts so you text the social worker and ask her to relay the message. you call the front desk and leave a message with someone and ask for a nurse to call you back. business hours end and you don’t hear back. you know the whole staff at the clinic goes home and forgets all about you and anyone else they saw that day or who tried to contact them. you wonder if maybe this formulation isn’t working for you, which has happened in the past with topical drug delivery.
it’s the next day so you try contacting the social worker again. it’s friday so this means time is running short for getting to speak to the doctor and finding out what to do next. she responds that the doctor said she’ll try to call on Monday. i respond to ask what i am supposed to do in the meantime and she says she will have a nurse call me. it’s as if no one wants to respond or help. the nurse calls and asks me if i’ve taken otc meds and i explain that i took what my body will tolerate and it didn’t have any effect. she says that if the pain becomes unbearable to go to the ER. i tell her that it is in fact unbearable and thanks for letting me know what the expectations are.
so we turned home into the anti-stanford hospital. my partner listened to me talk about how much pain i was in and then obtained some alternative meds to help me survive the weekend until my doctor is perhaps willing to call me. (**) he ordered us pizza and dessert to be delivered to the front door and carefully picked out clothes and got dressed for our impromptu date. there was just enough room to eat at the dining room table (he made space for me to roll my chair up to) with one cat on my lap and the other napping next to the pizza box. we held hands and talked about the darkness and the light and the tears washed over us. sometimes you may just need to stay home under the purple smoke and the moonlight and order in. spend the night in the nude and light candles. your partner gently reminding you that your body is innocent and it’s special and it doesn’t need what other people think it needs and that is okay. you’re trying out suspenders and ask what he thinks. he likes like you like it but also mentions the cut of the jeans isn’t really working with the suspenders. you’re glad to know this because you want to feel confident before trying this outside the house. you’re feeling pretty grateful that you can find so much to do inside your room, inside yourself. this chronic illness thing might be harder on an extrovert. i soaked my legs in the bath and read the first chapter of a book i haven’t read in over 10 years. i am already thinking about my 20 year high school reunion next year and wondering if i will be alive at that time. wondering who will be lost by then. who will talk to me this time around that didn’t last time and vice versa. how many have unfriended me on FB this year alone? i can only think of one off the top of my head and that one really did in me in. i had just reconnected with him and then he just panicked and cut and run. blocked me even. i can accept now that this will probably always hurt. and that i will always think it was my fault but know that it wasn’t.
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*you later tell nurse/doctor you tried otc medicine but you didn’t because you know your body. and you are tired of being told in the ER to go home and take Tylenol for chest pains and difficulty breathing. not everything (sometimes remarkably few things) can be treated successfully with tylenol or advil. sometimes a person has an allergic reaction to IV ipubprofen and no one knows why this is the fifth drug in two years to cause an allergic reaction in someone who is in their 30’s and had no prior drug or food allergies. these days cleaning supplies, perfume and candles are some of the most noxious odors around and cause instant headaches/migraines, nausea and lately even unremitting vomiting. you do not tell anyone that you are spending food money on prescription medicine you pay for out of pocket. at best it can reduce a bit of pain and help with appetite and sleep. but you know you can’t afford it and this is literally all the money we have. when i say ‘we’ it’s relevant to note that i haven’t been able to contribute financially at all for several years now. the toll that this takes emotionally is something beyond words.
**i will try to rally the energy to type her a message and hope that it goes through the online portal. i need to write the neurologist anyway because i don’t know why she is suddenly interested in seeing me in person in her office — is it because of the ER visits? is she actually reading the visit notes from the several other specialists i have been seeing recently and is aware of my neurological symptoms? is it because i slipped in through the back door and got in to see a neuro-occupational therapist and got a referral to neuro-physical therapy as well? it seems everyone can see something that she just can’t and i don’t want to keep wasting time with so-called care providers who fail to provide care and frequently cause harm and even lasting trauma to their patients.
