Thread by @Rosavecchia

#CPP #IPP #PAIN
@LelenaPeacock
@TheRebelPatient
@JETAR9
@cshel0607
@Mary86802059
@SpicyPurritos
@fightpaindaily
@cathy_kean
@hope411adcock
@DanLairdMD
@Irishbrat1966
@JoeAllenNewman
Wish cld add EVERYONE? Don't be offended if not added. Below's WHY I feel #PainKILLS 1/8

Been saying for many yrs even decades that pain does kill. I felt very close 2 death just 5yrs ago when I couldn't lift my head, take noise, light etc. Went 2 dr + said if he can't help me I'd hv 2 call ambulance f/his office. He increased patch 12mcg 'n changed 4 better! 2/8

Fast forward to last mos. Hv had 1 crisis aftelr another 4 many yrs now. Most disturbing was my body runs away on me + am 99% crippled + bedbound. Nobody would listen + I didn't have co-pays 4 many needed tests! Cldn't get help f/anyone 4 many diff conditions + needed tests! 3/8

Finally got out of financial difficulty and was all prepared to get all the tests I needed. Then #COVID19 hit. That's just my luck, always! Plus I was too sick to leave the house let alone have grueling tests, bt was now ready + willing in spite of declining rapidly! 4/8

Then my caretaker + partner (at the time) of over 12 years was in no-fault car accident so now even my caretaking went down by 90%. Their pain was/is so bad I've sacrificed. Am very accepting, yet naturally my health kept on worsening to scary levels! 5/8

Body continued 2 run away on me bt now started 2 deeply affect my #brain in ways I keep saying "is just not normal." I didn't tell my Dr bcz he only treats me 4 pain + didn't hv a PCP. The female I chose was AFRAID 2 even put me on table 4 a female test, so I nevr returned. 6/8

Finally saw neurologist Apr 6th. Told him EVERYTHING going on inside my brain as well as showing video of body running away. He tells me I hv LewyBodyDimentia. Is same disease #RobinWilliams had bt misdiagnosed w/Parkinson's. There's no test 4 LBD only symptoms + autopsy! 7/8

I knew I wasn't crazy yet never imagined I had something #worse than early onset Dementia or Alzheimer's, which are scary enough! I truly believe all the yrs was under/unmedicated is WHY this happened. 14yrs #CPP + 50yrs #IPP. #Gaslit til 4.5yrs. But 2 late. Imo, #PainKILLS 8/8

Am SO terrible at trying to make a thread! Took 4 times to do this correctly and because I didn't add the first tweet w/it; when pinned, it would have All been detached. My apologies that I suck at this, BUT can laugh at self AND DO! 🤣🤯

I'm not even going to ask to blame my brain for these incompetencies. The moral of the story is, however, that I am #dying .. Unless the Neurologist is badly mistaken YET still told me I DO hv LBD? Didn't mention how horrible the add'l pain is that comes w/this disease! It's bad!