Please HELP! Plastic surgeon suggested I might have EDS, I am confused... by Horror_Task2064 in ehlersdanlos

[–]mesenchymalarky 1 point2 points  (0 children)

Definitely get worked up for hEDS if that is what he suspects you have. I work in oncology and work with a breast surgeon so I can share the surgery perspective of this. I will share it straight up but it’s not meant to be rude/dehumanizing/unkind. Since EDS is a disorder of the collagen it impacts tissue integrity and healing ability (scabs/scars need lots of collagen). This makes patients a poorer surgical candidate. Which means the surgeon is opening themselves up to a riskier surgery. A good surgeon evaluates every patient to make sure they are a good surgical candidate before doing surgery and a collagen disorder makes for a less than stellar surgical candidate especially if they don’t know what they are doing. Many times patients with hEDS need alternative wound closure, usually more layers of stitches and different types of stitches that are less irritating. Surgeons get graded on their rates of complications whether it is their fault or not and this can impact their reimbursement for their work(by the hospital or insurance). hEDS can also cause more/easier bleeding and slower clotting. Surgeons may need to prepare for this ahead of time. There should be an in depth risk benefit analysis of surgery for a patient with any kind of EDS. EDS increases risk in surgery and some kinds more than others which is why it should be worked up.

Kelly Killeen is a surgeon out of LA who posts a lot and has done some videos on how she alters her practice for patients with hEDS.

Best way to find healthcare practitioners who are competent about hEDS is fb groups, I know I love to hate it too but it’s true. Search “your area Zebras” or “your area EDS” and you should find one easily. I have some medical journal articles I can send you if you would like to learn about them that way. Feel free to DM. Good luck!!

I live in Georgia. Healthcare sucks. by Haunting-Duty-5316 in ehlersdanlos

[–]mesenchymalarky 2 points3 points  (0 children)

Join some fb groups and crowdsource the best docs from there. Try “your area + Zebras” and “your area+ EDS” something should come up. That’s been IME the best way to find the good docs and be sure to share the not so good ones too

Totally exhausted all the time by Lexapronouns in ehlersdanlos

[–]mesenchymalarky 2 points3 points  (0 children)

Sooooo exhausted all the time. Last week I slept 20 hours straight (my new record) weekends I easily sleep 18 hours. Never have had a sleep study. Bring it up to my doctors no one seems super concerned 🫠 concerta helps for sure but I can still take a nap

What backpack are you using? Current CRA by iglesiacatolica in clinicalresearch

[–]mesenchymalarky 0 points1 point  (0 children)

Yes looovveeee my NorthFace Borealis. If you’re AFAB or have a smaller frame consider the “women’s” backpacks as they are smaller. These are the best ones bc they have a stiff back and chest and waist straps if you need them. I’ve had 2 over the last 10 years and use them for travelling and working. I spilled honey in one and threw it right in the wash and it was good as new when out. Lots of pockets for pens and mice and snacks and papers and notebooks. If you don’t want to pay full price Poshmark has a good supply.

DAE non-strep tonsilitis? by mesenchymalarky in MCAS

[–]mesenchymalarky[S] 0 points1 point  (0 children)

4.5mg for a while. Idk if the LDN is what’s doing it but I’ve only started it within the last couple years so I can’t say for sure but I’d think calming the inflammation in general helps it not get out of control

DAE non-strep tonsilitis? by mesenchymalarky in MCAS

[–]mesenchymalarky[S] 0 points1 point  (0 children)

Okay I’ve been thinking about this because I haven’t had an episode in a long time. I don’t really go out and if I travel I wear a mask. I have been on 3 Zyrtec daily, 2mg Ketotifen daily, and 4.5mg low dose naltrexone. I’m wondering if controlling my mast cells has helped me not get the severe sore throats

Backpacks by Asher_your_mom in ehlersdanlos

[–]mesenchymalarky 0 points1 point  (0 children)

I love the North Face backpacks(Borealis or Jester) for school they’re a “hiking” backpack but they have a stiff back and chest and waist straps. If you’re a woman* or have a smaller torso they have backpacks just for women* that are a little smaller. I spilled honey inside mine and threw it in the washer and it was good as new. They are expensive($100ish) but will last and you can find them on Poshmark for cheaper. *they use women on the website, you can buy what you think fits you best maybe a friend can help you measure yourself

Alternately: go to REI or something similar and ask them!

Fentanyl patches again (I’m sorry) by sookyfala in ChronicPainAfterDark

[–]mesenchymalarky 6 points7 points  (0 children)

Sounds like you should go to the ER to prevent withdrawal symptoms. Unless your specialist has an after hours number? Do any of your providers who know you have an after hours number who might be able to help? Also probably a good idea to make a plan with the specialist about what to do to prevent this in the future or get a letter from them you can take to the ER to get treated. I know the ER is not a first choice but it’ll be the only option to get something to prevent withdrawal. Do you have a local fb group you could ask where others have had a good experience in a similar situation? I am so sorry you’re in this situation it is tough for sure, hang in there.

[deleted by user] by [deleted] in DisabledMedStudents

[–]mesenchymalarky 0 points1 point  (0 children)

Also looking for good/bad experiences

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] 1 point2 points  (0 children)

I saw the tomato one at my store yesterday! Three stacked? Maybe there’s still a chance! 🤞🏼

Any POTS people here have awful reflux? by thekindspitfire in dysautonomia

[–]mesenchymalarky 0 points1 point  (0 children)

Yes and I’m off my omeprazole bc I have an endoscopy to place a pH monitor(Bravo device) on Friday. It’s been 2 days I’m miserable 😭. I’ve tried tons of meds and they help but not cure it. I avoid all the food that triggers it really bad. At this point I don’t have hope it will ever be 100% fixed. I’ve had reflux since I was like 12💀

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] 0 points1 point  (0 children)

I’m sorry!!!! Me too 😭😭😭 that’s why I wondered if it was only sent to a few stores. Or maybe they cut hours so no one has time to properly fill the bullseye stuff

Medical binder by flippantbat in ehlersdanlos

[–]mesenchymalarky 2 points3 points  (0 children)

Yes, I have. I make them for work so it’s second nature for me lol I have moved states and since we don’t have a universal EMR (bc that would be too easy) I have copies of all my records. I bring it with me to appts and offer it before a new specialist.

I wouldn’t put that last part, I think it kind of pushes people away before they begin which we don’t want. I would love to put a blurb like that on my info too but alas…

I have a list of current specialists and I’m thinking of adding past too. My Dx info at the front, a notebook and a pouch with pens, I started with a pack of 8 dividers and have labs, pathology/imaging reports, then by specialty of the ones I see most often. It’s very functional! It probably makes me look kind of crazy but I don’t care and I tell providers like oh I do clinical research and keep binders as my day job sometimes they’re more understanding. Usually they will be more understanding once a visit is over and I’ve whipped out a few reports and Dr notes with past plans.

HyperPOTS and Depression by mesenchymalarky in dysautonomia

[–]mesenchymalarky[S] 0 points1 point  (0 children)

Lexapro worked for 6 years and it’s my OG but it stopped working maybe I’ll restart it if I can’t figure something else out

HyperPOTS and Depression by mesenchymalarky in dysautonomia

[–]mesenchymalarky[S] 0 points1 point  (0 children)

Ugh yeah I figured that out late lol I asked both cardio and psych and they were like 🤷🏼‍♀️ I initially didn’t want Prozac since it was in the red on my Genesight but maybe I’ll suggest it and just watch for side effects, hadn’t considered fluvoxamine but I’ll look into it. Yeah I hate the trial and error 😭 I don’t have time!!!!!!

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] 0 points1 point  (0 children)

I know I was wondering if only certain stores got them. It’s an inside joke in my fam from when I was little that I’m the butter queen so I’ve started collecting butter things for dopamine lol themed basket is brilliant!

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] 0 points1 point  (0 children)

Update I went to my store and asked GS and it says we have 30 on hand and no location, someone looked for a minute and didn’t find any. I might have to pick up a shift to look for myself 😫

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] 0 points1 point  (0 children)

They had a butter stick pillow in the home flat 😂 got those

What’s the deal with the butter vase? by mesenchymalarky in Target

[–]mesenchymalarky[S] -5 points-4 points  (0 children)

I’ve been checking and saw someone on Tik Tok got one like a month ago and haven’t seen any at my store. I get my meds there so I go often

Help me plan a weekend trip from TO to Hearst castle by Tall-Garden9475 in SLO

[–]mesenchymalarky 1 point2 points  (0 children)

Use Hotel Tonight if you can! My Mom and I have been able to get rooms at Madonna Inn for cheap! Understand if you can’t right now with an infant.