Blood Clot Scare Part 1 : A Day in the Life (Having Behçet's)
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- Опубликовано: 3 окт 2024
- Part 1 of my Blood Clot Scare (May 2015; I've had more than one). Just showing a "typical" day in my life; dealing with appointments, doctors, and symptoms; talking about how even medical professionals who deal with these kinds of diseases on a daily basis still don't really "get" what it is like to have chronic disease (more on that to come!). Behçet's (Disease / Syndrome) from a more personal perspective.
Please excuse my horrible appearance in this video; I was dealing with a few hours of sleep over 3 days and was having some "prednisone puff" issues out of the blue ... plus I wanted not to wear makeup to ask the doctor about my face ... which never even happened! And I was too exhausted, too beat down, in too much pain, and too scared afterward to even think about that stuff. This is the tip of the iceberg of reality with Behçet's. (Please also excuse my poor singing!)
Please subscribe, give me a big ol' thumbs up, and comment! I would love to hear about your experiences with Behçet's or any other chronic disease as well as your experiences dealing with doctors who still don't really "get it" (even after years of treating you!)!
I am making these videos for International Behçet's Awareness Month (May) and in "preparation" for Behçet's Awareness Day (May 20).
In memory of all the amazing Behçet's warriors we have lost far too young and too soon over the past few years. I think of you every day of my life and I will keep on fighting for you!!! We will always remember all you have done to help raise awareness for this insidious disease and for all you have done for us as a community. Thank you!!!
Uhg I feel you on a lot of things here. I have to commute 30 minutes to any appointment, and often end up busing, which is a ton of fun with crohns *sarcasm* My doctors know how far I commute, and still end up making me wait forever, and don't have any bit of understanding for lateness. I've been forced to reschedule for showing up 5 minutes late...I feel that that is just sheer stubbornness! Also, crying after/during/before appointments is so normal with chronic illness. I swear I leave wanting to find a new doctor 9 times out of 10. Really says a lot about how lacking the medical field is in compassionate doctors. Now I'm going to watch the rest of your blood clot series journey >.> because insomnia.
+Marvolo that's awful. thankfully things have been rectified between this doctor and me, but it was tense and i was PISSED that's for sure. like you say - even if you have to wait 30 minutes after your appointment AFTER you've traveled there and you know you have to get back and you're not feeling well ... that's tough. yesterday i had to get up at 3:30am to make an 8:30am appt (yeah ... too long of a drive, that's for sure!) and i got there at 8:20 but i didn't get OUT until almost 10 ... and most of that time was waiting, having people called in before me, etc. i really can't complain because i have some AMAZING doctors who i can call/e-mail and have emergency meds within 5 minutes, but it is frustrating when you have to deal with this situation and especially when the doctor knows how sick you get. i'm sorry you have to deal with this - for your wanting to find a new doctor 9/10 times, i probably have! that's one of my biggest pieces of advice to anyone with chronic illness - if you don't feel your doctor is being helpful or compassionate enough, etc., FIND A NEW ONE (and like in the situation in this video, thankfully my doctor and i worked it out so this was a one time thing because i would have gone out and found someone else)! but it is difficult enough having to go through all the things we already have to go through EVERY DAY that doctor stress and not getting the right medical treatment/attention is just bs - which is tough too because i know finding a new doctor can be 100x more difficult. phew. rant! and oh insomnia! i've had terrible insomnia since this whole strep fiasco started, so i'm with you there too! i hope you're having a better day today :-)
Yeah I don't miss strep throat, I hope it clears up for you soon. I used to get it 6+ times a year until I got those pesky tonsils out. I'm glad you worked things out with your doctor. Sometimes it just takes a good cry and a long conversation to get back on the same page. I think one of my big issues is just a lack of options due to my insurance and location - just a few more reasons our medical system is failing us lol. But doctors that are willing to communicate and prescribe medications via phone or email are a serious blessing in my life. I just wish medical teams worked closer together for illnesses other than cancer. Does that make sense? Like a cancer team of doctors actually communicate with one another to give the best treatment. That'd probably make life a lot easier lol.
you're so right about the medical system failing us - it terrifies me. TERRIFIES ME like keep me up at night legit. yesss! oh my god i have said that FOR YEARS because i have always gotten my infusions at the "cancer center" and just by default the cancer patients get a naturopath, a nutritionist, a pain management doctor, etc. like ... i know cancer SUCKS and i'm not by any means saying they shouldn't have those things, but we should definitely have access to those things as well, especially because 1. we're on a lot of the same meds with the same bloody side effects, 2. the meds we take that are different PREDISPOSE us to cancer in various forms, and 3. for the most part, someone who is going through a battle with cancer isn't doing so for his or her ENTIRE LIFE. i mean i am lucky that my doctors communicate more now than they EVER had in the past, but you are so right.
Thank you for making these videos, for others in your situation and for people like me who had no idea.
Robert Clyde thank you! part 2 (hopefully the last part ... although i STILL DON'T KNOW!!!) is up now!!! please check it out ... i think it's better :-)