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Hot Mess with Grace
Hot Mess with Grace

Life's a “Hot Mess” – Let's Do it with Grace

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  I Promise I'll Spill the Tea . . .

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Smoldering MS —> What the heck is that ?! 🔍 Smoldering MS —> What the heck is that ?! 🔍 At my most recent appointment, The concept of “smoldering MS” was introduced to me as an answer for my flare up of symptoms outside of a clinical relapse. It’s a new area of research that is investigating why some have symptoms but no textbook relapse evidence. What they’ve been finding is that at the site of current lesions (areas of damaged brain matter), MS is still active 🔥 in a burning/ smoldering way. 📑 Think of it like the edges of a piece of paper after you light it on fire. This smoldering MS can also be attributed to subtle enhancements in lesions (ex: my recent post how mine are active at the old sites… but it cant be counted as a technical relapse, even though they’re a bit bigger). ♿️ Research is also finding that disability from MS is no longer tied solely to relapses and active periods of inflammation, But that this “slow burn” is actually just as debilitating— possibly even more so since it’s always present (and flys under the radar of textbook relapse). More studies need to be done- but a lot of internet papers seem to want to swap focus from just treating isolated relapses, to quieting the entire pathological process. 🔀 🔍 Where we go from here? I have no idea. BUT — I think it makes a whole lot of sense. 🤔 What do you guys think?? #thesmolder #smolderingms #smoulderingms #hotmesswithgrace #theawkwardflamingo #multiplesclerosisresearch
My sexiest OOTD yet 😝 MRI day hit different thi My sexiest OOTD yet 😝 MRI day hit different this year. . . I lay there in the tube with the same thoughts that ran through my mind when I was diagnosed: “Please find the answers to my troubles.” 🙏🏻 A silent plea with the big man. I’ve been operating these last 5 years since I was diagnosed on autopilot. —> Take Ocrevus twice a year —> Eat good foods —> Move my body more —> Drink lots of water —> Supplement the vitamins I cant possibly eat enough of Wash. Rinse. Repeat. I honestly haven’t thought too much about MS. It had moved into the “fact of life” territory for me: something that was just THERE. But not in your face. Until this year. This year was ROUGH. And my drs brushing me off made it even harder. So when that notification came through that my results were up — I’ve never been more thrilled for some not so great news in my life 🤣👏🏼 . . . Well except maybe when I was diagnosed lol. 🖐️ 5 of my lesions show enhancement —> All of which correlate with the symptoms I’ve had flaring up. And as a bonus round of fun 😜 I get an extra sexy T10 lesion in the vertebrae itself (at that point isn’t MS related). ⬇️ Which as crappy as that is >> completely explains the leg cramps, contractures, claw feet and drop foot, bladder, digestion… all the cute stuff that was “all in my head.” 🎀 To slap a bow on this gift and call it a wrap . . . The one dr (remember the one who has been telling me I cant possibly be having a flare up, then sent me to tens of thousands of dollars of specialist appointments, all for them to find NOTHING, so they concluded it was MS), Yeah— she reported that my scans were great and had nothing to report 🤣👏🏼 Thank God for MyChart & Second Opinions ✌🏻 💕 ✨ #hotmesswithgrace #theawkwardflamingo #mymsjourney #myms #mymslife #sicknotugly
"But You Don't Look Sick." ♿️ "You're not hand "But You Don't Look Sick." ♿️ "You're not handicapped - you can't park here." "There's No Way You have MS." "You're fine - it's all in your head." The list goes on and on of all of the things those of us living with Multiple Sclerosis hear on the reg. If I had a penny for every time someone told me I don't look sick - I would be happily retired on a tropical island by now 😏 My mission here @hotmesswithgrace is simple: To change the way the world sees Chronic Illness. We're sick. We're not ugly. And we sure as hell don't owe anyone any apologies. ✌🏻 ✨ 🫶 😎 💕 #hotmesswithgrace #sicknotugly #invisibleillnessawareness #multiplesclerosiswarrior
#mugshotmonday ☕️ is back & fiercer than ever- #mugshotmonday ☕️ is back & fiercer than ever- let’s chat Catch 22’s and insurance 🫠 Have you ever dealt with ridiculousness like this? What’s the most infuriating thing you’ve run into with your MS? Or chronic illness? #msjourney #mswarriors #mswarrior #chronicillnesslife #spooniesisterhood #thingsthatmakeyougohmmm #ocrevus #ocrevusinfusion #ocrevusjourney
Of all the things that have been cancelled in the Of all the things that have been cancelled in the last 3 years — this still isnt one of them??!! 🤯 I’d like to talk to the manager . . . #millennialmemes #mommemes #mommeme #hotmesswithgrace #daylightsavingstime #daylightsavingstimesucks
Probably one of the funnest transitions to make 😝 Vegas was AMAZING 🤩 Like I would move there in a heartbeat (I’m jelly of all you Southwesterners). Heat is a trigger for me and my MS, But it’s got to be something about this wet heat on the East Coast, Because it was 90* every day in Las Vegas ☀️ but felt like 75* It was G L O R I O U S 😎 10/10 recommend for any MSers who love some sunshine but cant tolerate the heat well. Alexa told me it was 27* here this am. ❄️ I guess I’ll go hibernate now. #hotmesswithgrace #lasvegasnevada #mswarriors #chronicillnesslife #travelingwithchronicillness #travelingwithdisabilities #momcation #parenttimeout #multiplesclerosissupport #spoonietravels
When your “brain eating disease” isn’t a t r When your “brain eating disease” isn’t a t r i c k or a t r e a t 👻 #zombiedisease #multiplesclerosisawareness #multiplesclerosis #chronicillnessmemes #spooniesisterhood #autoimmuneawareness #mswarriors #hotmesswithgrace #theawkwardflamingo
The Internet Gods reigned down some fun on my girl The Internet Gods reigned down some fun on my girlies this past week with some gifted products Fromm @geyiie_toys 💕 We were sent their at home nail salon & hair braider/beader sets (both available on Amazon) And here’s what we found: • The nail dryer was a luxury for the girls —> they thought they were fly as heck and said it was as cool as the nail salon.

The color variety was good - pink, green, yellow, purple 💅🏼 
and the glitter tool kept the mess from getting all over the table.

 • The hair beader was a lot of fun. Definitely some retro 90s/ y2k vibes✌🏻 
 The girls loved the bead shaped clips for the end of their hair the best (little do they know the things we did to the ends of our hair to make the beads stay — did anyone else’s Mom do tinfoil ??!! 💀🤣) 📦 Both of these awesome products can be found on Amazon,
AND are on sale right now - so double the #momwin 🙌🏼 I definitely would repurchase for a special little girl in my life for the upcoming holiday season 🎄 I 🔗‘d it in my stories to make it easy! #geyiie #geyiietoys #hotmesswithgrace #hotmesswithgracekids #millennialmomlife #millennalmomapproved #monfluencer #holiday2023 #holidaytoys
Traveling with sunglasses has always been the deat Traveling with sunglasses has always been the death of me 😖 No matter what I do — I always seem to catch the nose pieces on something & break them 😑 I’m thankful for accessories like this one that are sturdy & compact enough for travel ✈️ •••••••••••••••• 💝 Download the Temu app & search code: afv10170 for a coupon bundle from me! 😎👉 https://temu.to/m/upl49ixx8mw #productreviewer #productreviews #travelaccessories #travelaccessory #travelaesthetic #momfluencer #momfluencers #temufinds #temufinds2023
My toxic trait is burning the candle from both end My toxic trait is burning the candle from both ends 🕯️ 🫠🥸 What’s yours? #spoonielife #spoonieproblems #msawareness #chronicillnesslife
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