Whether you’re newly diagnosed, in treatment, or caring for someone with myelodysplastic syndromes, this is your space to connect, share, and feel understood.
💬 What’s one thing you wish more people knew about living with MDS?
4 reactions Hi, my name is aintgettinanydeader, AKA Jim
I was diagnosed with MDS-EB1 in 2020 and received an allo stem cell transplant in March of 2021.
Still beating the odds, and hoping everyone else is doing great as well!
6 reactions Hi, my name is Radioman70c1. I've been diagnosed with mds
I had my second reblozyl injection. Y'all, I am laid out. I can't. Nada.
I need to go grocery shopping, do laundry, put gas in my car to get to work next week. I need to email parents, post assignments online, and lesson plan for the week after. #distra
And yes...as the picture indicates, I don't like asking for help. It's not that I don't appreciate it or are grateful when it comes. I literally don't know how to ask.
These are the moments I can't stand being sick...when I need to hustle but my body physically can't. I see these beautiful stories of other teachers with cancers teaching from their hospital beds and I really, really don't know how they do it. #MyelodysplasticSyndromesMDS #RareDiseases #BloodCancers #DistractMe
This is my own class motto: This year, we are going to do common things in uncommon ways.
I can't tell you how scared I was when the news alert popped on my phone that said we had new covid cases in the triple digits. Uncommon indeed. Reflecting on my decision to continue teaching is complicated. My health puts me into a very dangerous, very narrow category of people who would struggle with fighting this disease; my financial situation requires that I work. I haven't even met my students yet, but I'm anxious for their safety too.
So...I'm going to try to focus on what I can control. I can control the cleanliness of my classroom and the protocols in place there. I can control my transmission risk by not going out to other stores, restaurants, places when not absolutely necessary.
I'm wishing all teachers and those involved in education (looking at you PTTs, PPTs, EAs, TAs, office/clerical staff, and custodial staff and anyone else I've missed) a safe new school year. #RareDisease #ChronicIllness #Anxiety #MyelodysplasticSyndromesMDS
This came in my dog's BarkBox today and, well...obviously it was meant for me and not my dog.
If people every wonder what teachers could possibly do during the summer, I spent most of my day cleaning out closets that had old curriculum from before I graduated high school (while back y'all) and sitting through professional development that could bore you to tears, but is required.
So yeah, today was not a day I could give my all. Today only got my some. Tomorrow's looking that way too.
#MyelodysplasticSyndromesMDS #Spoonie #ChronicIllness #COVID19 #sendfunnies
I woke up utterly exhausted this morning. Can't raise your arms up exhausted. Dealing with a moody teenager and a husband on a deadline a day before a holiday. Send hacks. Send coffee. Send prayers. #senditall #ChronicIllness #MyelodysplasticSyndromesMDS #exhasted
I wont be terribly far from home, about 2 hours, enough that it's not always going to easy for people to visit me. I'm sure there will be times during the transplant process that I wont be allowed visitors too. The stress of having MDS has already aggravated my #Anxiety & #Depression and I know it wont get any easier. I will have pictures, things to do, a phone, access to social media, ect. Any other suggestions?
#MDS #MyelodysplasticSyndromesMDS #Loneliness
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