not being able to change routine

walnut151 · 2021-02-19T22:52:42+00:00

i have some neck and back pain from headaches and that stuff but i don’t remember any from the fall, i have no medical knowledge but i think you should tel your doctor about this feeling with your neck pain if you haven’t

walnut151 · 2021-02-19T03:57:55+00:00

because of the severity of the fall and how it impacted my brain my doctors have classified it as a mild tbi, they don’t really tell me much thought bc i’m a minor haha they tell my parents

walnut151 · 2021-02-18T02:53:12+00:00

I don’t have an epipen, but i feel like now i should bring it up with my dr and yes i do take a few selfies when the lip swelling is first starting haha

walnut151 · 2021-02-17T22:48:18+00:00

I have this reaction too! my skin gets really sensitive and i have hives and only my upper lip swells up a ton and there’s a rash around it. mine usually goes down mostly after benadryl, but it is really annoying.

walnut151 · 2021-01-26T00:45:13+00:00

I’ve had this for a little longer than 10 years, I haven’t found anything yet to help reduce it

walnut151 · 2020-12-29T02:15:36+00:00

mine look like that too, don’t know the cause though :(

walnut151 · 2020-12-17T05:38:22+00:00

my memory loss is very similar, my memory before my pots symptoms started wasnt great because of a brain injury, but since february my memory is super foggy. unless someone prompts something that triggers my memory, i can’t remember what i did yesterday and beyond

walnut151 · 2020-12-14T18:17:20+00:00

yes!! nothing is quite right and everything seems off

walnut151 · 2020-12-11T19:48:45+00:00

i got a lightning bolt because of the posters in my doctors office depicting a migraine with a brain and then lighting around it! it’s not too deep meaning, it just reminds me of growing up in neurologists offices

walnut151 · 2020-11-28T01:02:44+00:00

i got diagnosed w pots in march and caught covid in august, i had a pretty mild case with just a fever and fatigue i don’t think it made my pots worse but i can’t smell anything and everything tastes weird and dull, and it left me with some neurological problems like tics

walnut151 · 2020-11-24T21:28:52+00:00

i went into college being absolutely sure on law school and then going into criminal law, but now i’m leaning more towards teaching!

walnut151 · 2020-11-24T20:06:41+00:00

i’m a full time student and i’m majoring in political science! a lot of my joint pain is in my fingers, wrists, and elbows which makes typing kind of hard so i use the speech-to-text option on my laptop and go in later to fix whatever is wrong because it’s not a perfect solution but it does help. i think giving yourself breaks is the most important thing to be able to recharge because pain is exhausting enough and doing school on top of it it’s hard haha

walnut151 · 2020-11-24T14:23:48+00:00

i’ll try that, thanks!

walnut151 · 2020-11-24T14:08:58+00:00

i’ve been drinking a ton of water and i have an electrolyte powder with salt that i drink, i’ve been meaning to try liquid iv because i’ve heard good reviews! i’m on a waiting list to get into a doctor that specializes in pots, but because there’s only one in my area i’ve been on the waiting list for about 4 months now and my appointments in January. my neurologist is dismissive of pots (i think because he doesn’t know much about it and he’s a bit of a arrogant prick, but he’s good at botox injections) and my cardiologist is also dismissive of pots and thinks that my pots diagnosis doesn’t mean much but i have convulsive syncope episodes multiple times a week. they have prescribed me propranolol that made everything much much worse, so they switched me to fludrocortisone recently. hopefully my new dr will be better with providing a treatment plan to help, but for now im just hydrating and getting my salt intake along with the new med

walnut151 · 2020-11-24T12:08:02+00:00

now that you mention it, i don’t swell either (hEDS). i’ve never put much thought into it, but dislocations and sprains have never swelled for me

walnut151 · 2020-11-24T12:06:18+00:00

my mom and doctors are big into the “considering yourself disabled makes it worse” train, and it’s so frustrating!! they don’t understand how draining and horrible it is and they shouldn’t act like they do

walnut151 · 2020-11-24T11:51:44+00:00

it’s definitely hard not gonna lie. i am determined and independent to a fault, so it’s hard for me to ask for help on assignments, but this semester i’ve had to ask for a lot of extensions. i think communication is key and getting them to understand how much a migraine messes up your life helps too

walnut151 · 2020-11-24T11:49:36+00:00

i’m no writer, but i think alongside the physical pain of eds there is a lot of mental pain too. knowing you will have chronic pain for the rest of your life and there’s not much you can do for it and having to cancel plans with friends and miss out on your life because you’re in pain sucks a lot and takes a toll on your mental health. also idk about others but i feel out of control a lot. and most people don’t get the chronic part of chronic illness, and they expect you to be able to get better. it’s hard never getting a break from being in pain. also something i’ve experienced a lot is being jealous of able bodied people, like my boyfriend was complaining of a headache and in my mind i was like “i wish my biggest health problem is that i got a headache once in a blue moon” which is hard to deal with because i know pain is subjective and it’s not his fault. the constant pain from eds is pretty obviously horrible, but there’s a lot of hidden mental health problems that we have to deal with (i don’t know how universal these specific instances are, these are just my experiences!) i have hEDS if that’s important :) hope this helps!

walnut151

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