#chronicliving
the bitter sweet reality of a famous person being diagnosed with EDS/MCAS/POTS.
I’m so glad people will have more awareness & recognize someone can appear to be fine but struggling medically and that somebody they care about and idolize has these struggles so anybody can. The reality is also that even if a celebrity gets all three diagnoses….these are medically rare & isolating conditions that are difficult to come to & in most cases chronic and lifelong. The fear that everyone’s favorite entertainers’ dx’s are publicly known & that may inspire people to think they are now experts on the condition. Our doctors at times have yet to understand so it’s terrifying to think that people may want to start raising public awareness about something still widely misunderstood in medical spaces. The public already thinks suggesting unsolicited medical, dietary, health, and wellness tips are acceptable & helpful. It’s not. As much as it feels good to be able to identify and feel understood….the statistics & understandings are limited & isolating.
Still emotional thinking about the day my EDS diagnosis was confirmed. So many years of medical trauma, gaslighting, misdiagnoses, and learning about my body. It was a difficult journey but I remember crying & feeling so relieved & that everything finally made sense.
tinder with chronic illness be like…….
(he’s a doctor so at least he knows what he’s talking about)
turns out I’m autistic
Trying really hard not to give up right now. Asdfjkl;
doctors constantly talk about the dangers of high blood pressure but there isn’t as much awareness of how equally as dangerous low blood pressure can be.
a breakthrough, maybe?
it felt sooo amazing to have my mother sit down & listen to me talk about why I need to talk about mobility aids & she committed herself to learning & raising others’ awareness of my condition.
painz n gainz
tomorrow I get to reconnect with my long lost physical therapist that first identified my EDS. she moved away & I’ve tried other pt’s but I’ve found my way back & I’m willing to wait & go the distance for the right fit. I just know it’s gonna go so well.
living with a chronic illness is really depressing sometimes. you can do everything right and still hurt. you can make all of your appointments and still be struggling. you can do nothing and feel completely exhausted and defeated. le’sigh..
excited to be reconnecting with my old physical therapist who specializes in EDS/hypermobility. 6 more days until my bone lesion excision & then I can get my health back on track !!
18 days until my foot surgery! I’ve struggled with excess pain for over two years and finally set a date to have the benign bone tumor exised. I’ve never been so happy for an appointment [besides the weed card doctor].
idk what’s worse…
talking myself out of canceling my 4 specialist appointments this coming week coz ik they are important & pushing through my past traumas with doctors… or … dealing with chronic & debilitating physical pains 
personal health update:
I have a benign bone tumor on my foot. I also will be seeing an immunologist & then a geneticist with a special physical therapist who deals with hypermobility to manage hEDS. My rheumatologist wants me to also try to see a dermatologist to possibly look at an HS diagnosis.
ahhhhhhh
nervous for rheumatologist today. appointment isn’t until end of the day but my anxiety is at a high point & I know my day will revolve around getting there and being on time and trying to remember everything I need to say/ask.
wish me luck
this is a big week for me but also kinda scary. tomorrow I have my primary care appointment after physical therapy & then the next day is my rheumatologist. I know it will be okay but I’m so scared. doctors are not always the best experience for me & it’s upsetting to think about all of the ways it could go wrong.
Chronic Painz n Gainz - Group Chat on Tumblr
All welcome !! Accepting requests daily. Ily.
that amazing feeling you get when
you go to a new clinical care professional/doctor & leave feeling validated….maybe even looking forward to going back….to be understood
spoonie tips for my younger self (which still apply to my self & anyone living with chronic illness):
documentE V E R Y T H I N G. some people will listen & try to help you…but the fact is so many health care professionals are dismissive and/or assert your symptoms are psychosomatic. navigating the system is difficult - especially when you call to make an appointment scheduled for 3-6 months out with a specialist to discuss symptoms you are experiencing right now. the referring doctors notes will not be enough. your body chemistry and/or flares could ebb and flow and test results may look normal by then. your condition may affect many systems of your body and be understood differently by different people. don’t let doctors be dismissive of your symptoms and/or experience. keep a journal. take live pictures with time stamps. advocate for yourself the best you can with whatever resources you have if you are able. sending my love to all of those in need. ily.
Also, ask your doctors for paperwork of all of the bloodwork/tests/visits/diagnosis results after every appointment and keep copies!!! Bring them with you when you see any new doctors. Even with systems that are supposed to connect all doctors to your medical records, chronic illnesses get suspiciously lost in the shuffle and not entered in properly. I got a new GP last year and none of my records from my past rheumatologist and neurologist had been entered stating that I had been diagnosed with fibromyalgia. A few months ago, I was diagnosed with POTS, and my cardiologist, who I know for a fact is part of the system that keeps my medical history, never entered it into my records. Having that paperwork on hand really helps, especially with invisible illnesses. Don’t let doctors brush you off.
I also find I forget everything I want to cover while I’m at the appointment. So I keep detailed notes about symptoms, issues, and questions over time, then just before appointment I go back over my notes. While reviewing notes, I make a quick list of symptoms and questions I have. While with the doctor, I use the summarized list to make sure I don’t miss talking about anything, without having to scan the entire collection of notes.
Yess!!!!! I love all of the suggestions in the reblogs. Share to save a spoonie some spoons!
having your loved one shame you for not being able to immediately do the task/activity they requested because of your pain/physical limits is a special kind of isolation…
Shout out to my racist auntie who full heartedly believes pain makes you stronger. Btw thank you for that post that you found & shared on FB about how we all have to keep indulging in toxic positivity so that way our anxiety and fear doesn’t take over. I’m so glad you were looking out for me. Also I didn’t realize you had expertise in the physical and mental health field. Someone with knowledge and consideration at your caliber certainly shouldn’t have been a domestic housewife for the last 30 years. The masses need you.
steps & boundaries I’m currently pursuing to cope with stress & chronic illness
-setting up virtual physical therapy appointments for twice a week
-setting up virtual counseling appointments for once a week
-not checking work emails outside of scheduled business hours
-making time to do something intentional& enjoyable just for myself - at least once a week
-start making lists again
-loving myself
to counter my losses…some things I’m grateful for:
-being able to walk
-being able to drive
-being [relatively] mobile & flexible
-being aware of my body/limits
-being realistic about my chronic illness
-working to set healthy boundaries to preserve my physical, mental, and emotional wellbeing
-being [non-a]cute
