#teaandspoons

A Holter monitor is a device that sticks onto your chest and measures your heart rhythm for a day or two.  It doesn’t put any electricity into your body, it just measures the electricity your heart makes when it beats.

You’ll usually go to the cardiologist to have the monitor put on- this should be a short appointment, about 15 minutes.  They’ll explain how to take care of the monitor, put it on, and that’s it

There are a few different types of monitor you might be given.  The older kind has between 3 and 6 stickers on your chest with wires on them that connect to a box you wear on a lanyard or clipped to your clothes.

The newer ones have a small box on a sticky patch that goes directly on your chest.  Depending on the style, it might be a square that goes under your left collarbone, or a longer strip that goes up the middle of your chest.

Especially for the newer monitors, they’re super sticky and the person putting it on will have to push firmly when putting it on.  If you have sensitive skin or allergies to adhesives, you can have a patch test done ahead of time to see if you’ll be okay with the monitor.  You likely won’t have to put a gown on to have the monitor put on, they’ll just have you lie back on the table and lift your shirt.  If you’re wearing a tight sports bra or binder, you may need to take that off and change into a gown, but you can put it back on as soon as they’re done.  You can’t get the monitor wet, so I would recommend taking your shower before your appointment.  No lotion though, or the monitor won’t stick well.

Somewhere on the device, there will be a button for you to press when you notice symptoms.  The doctor will look at all the information from the device, but pay extra attention to times where you pressed the button.  You’ll also be asked to keep a record of anything you did while wearing that might have affected your heart rate, like exercising or watching a scary movie.

For the most part, you can just go about your regular day while wearing the monitor.  Just try not to get too sweaty, and don’t schedule an MRI for while you’re wearing it.  If it starts to peel, you can use medical tape to keep the edges down.  A shirt with a high neckline will hide the device pretty well, although if you have a flat chest, the bump or wires will be more noticeable.

Once it’s been however long your doctor wants you to wear it, you can take the device off.  It’s a lot stickier than your average band aid, so it helps to have an adhesive removing wipe or baby oil to loosen it.  You’ll either have to drop the device off at the doctor’s office, or they’ll give you a box to mail it back.

You’ll find out about the results at a follow up appointment with your doctors, unless there’s something urgent, in which case they’ll contact you sooner.  Some devices even send live information to your doctor so they can keep an eye out for anything that needs immediate help.

Hello! This isn't something I personally have much experience with, but I talked to some friends who have, and here's what I've learned:

-Your GP is the one who can write a prescription for custom equipment, and a physical therapist or occupational therapist is the ones who can take measurements and order it. You can ask the geneticist if they have any resources, but they likely won't be the person guiding the process.

-You don't need a prescription or doctor approval to buy a generic mobility aid. However, talking to the providers who know you best is a good idea to make sure you're getting what will work for you.

-Whether it's written down or in your head, come prepared with a list of symptoms you're having and how they're impacting your life.

-If a provider immediately says no and doesn't offer any alternatives, there might be a disconnect between what you and your provider each understand about your symptoms/conditions. I know it might be scary, but you're allowed to ask about alternatives, ask about solutions to concerns they raise, and clarify the difficulties you're having.

thanks :) hope your day is going well!

Yes I know exactly what you're talking about! There are forearm supports that attach to regular walkers, which you might find under any combination of the following names: walker platform attachment, walker arm trough, forearm cradle, forearm walker attachment, forearm platform attachment.

Some of them look pretty pricey, but hopefully you can find some that are still cheaper than a forearm walker. I would also recommend talking to your PT/OT, as they might know where to find discounted ones, and can help make sure the attachments are positioned safely.

so ive been to an OT recently, and have been referred to a PT. OT confirmed i am hypermobile and knows about the leg pain (plus back pain, knee issues that i just whole ass forgot to mention before, etc)

so obvs ill try discuss things with the PT when i get to them eventually but i kinda just wanted to ask for your opinion on some things if thats alright? though ofc no pressure /gen

do you think itd be a good idea to get like. crutches (since a cane probably wont help at all) or a walker, for me? (ofc if youre not sure thats chill its kind of weird for me to expect you to like. Know ig yk?).

do you think its like. reasonable for someone to go for the “easy” route (being mobility aids) instead of the more annoying, difficult route of strengthening exercises and junk (talking specifically about my shitty hypermobile knees here). ik that sounds bad with like. saying mobility aids are like “oooh an easy out” or qhatever, thats not what i mean i just dont really know how to convey the idea. (also yea this concept kinda ties in with the whole thing of autonomy, but im nothing if not a sucker for reassurance lol /lh)

sorry for the second disgustingly long ask from me, and sorry im like. throwing problems at you, theres no pressure to answer or nothing. hope your day is going well /gen. sorry + thank again

-legpain johnson /silly

Hello hello, sorry it's taken so long to get back to you! So glad to hear you're seeing OT and PT, hopefully they've been helping lots.

My recommendation would be, why not try BOTH the mobility aid and the strengthening exercises? I think it's very reasonable to try whatever may help your quality of life, both immediately and in the future. My crutches and my increased joint stability from PT exercises both give me more freedom and safety in different ways.

Hi there, 

I am Tea’s partner and she tagged me in to answer this question, since I am often helping and taking charge during her potential or actual medical emergencies. 

First off, I would like to say that it sounds like you’re doing everything right, and being anxious is totally normal. Second off, I highly recommend therapy and/or practicing emotional regulation skills, because it seems like you’ve got some clinical anxiety and/or intrusive thoughts that should be addressed for your general quality of life. 

In terms of specific tips for supporting a loved one who has medical emergencies, I’m working on an infographic that explains what I’ve learned so far, but here’s my biggest suggestion. Work on building a strong support system of non-disabled people who you can talk to and lean on of things get scary. (Like how you shouldn’t process unlearning racism with PoC, I don’t recommend processing this with disabled people) This can be parents, therapists, friends, journaling, etc. 

so we have a vague cardiovascular condition that seems to be affecting our legs a whole lot. so we get really intense pain in the lower halves of both our legs. rest helps, of course, but its slow and we wont always be in a scenario where we'll be able to rest, yk? so we've been looking in to mobility aids because we kinda like the idea of being able to walk around outside without being in terrible pain /lh

but we've kind of got a few issues with it, being mainly: a) what. do we get. we're looking towards wheelchairs because the sitting will be good for the legs and also the hypertension. we do get a decent amount of activity in to avoid aggravating it (being. we pace around at home A Lot lol)

b) how do we get any kind of mobility aid without our parents knowing. our mother is the type to not really take us seriously at all regarding our health

and c) how to deal with the whole "erm. [xyz] = you cant get a mobility aid". for us its a whole fear that we're the cause of our own physical issues and therefore we arent Allowed to get a mobility aid cause that'd be. "stupid" ig, despite the fact thats a pretty fucking dumb line of reasoning. not like they'll stop making fucking. walkers if we buy one or whatever lol

sorry for the long ask, we're just kinda. desperate lol. and your blog seems nice (though totally no pressure to respond of course lol)

hope your day's going well :)

Hello hello, I'm sorry it's taken me so long to answer you! I hope things have been going okay in the meantime. I also support the idea of being able to walk around outside without terrible pain! Here's what I'm thinking that may help you get a mobility aid:

There are a few places where you can try out different mobility aids to see what you like- pharmacy, medical supply store, even the grocery store should have some scooters and possibly canes in the medical aisle. Nobody should question this, but if they do, you could tell them you're checking the height to see if it works, or shopping for your grandparent.

On a related note, try to make sure that your mobility aid isn't causing you to hunch forwards. If it is, you either need to make it taller, or you need to stay leaning on the backrest while you push a wheelchair.

If you find something you like at one of those stores, great! You might also find a secondhand version for cheaper online. I think you can have things shipped to the post office to pick up there.

Especially if you're not using the mobility aid around the house, I'm wondering about keeping it in your car or locker or a closet at work- whatever applies to you.

I will just put this out there- I obviously don't know your situation, but some people do change their minds about mobility aids when they see how much your quality of life improves.

Honestly I love your response of "it's not like they're going to stop making walkers"! Your physical issues are not your fault, and looking to reduce pain is a good goal. Even if it was your fault, you still deserve to feel better. Mobility aids are for anyone who benefits from them.

Hello! I'm so glad my blog has been helpful so far. It sounds like you were sent to OT because you're having a hard time with your daily activities, so the short answer is that OT will help you find ways to engage in said activities. The long answer is...

-Treat any injuries to your arms, such as a dislocation or carpal tunnel syndrome. This can mean exercises, bracing, ring splints, tape, massage- similar to PT

-Teach you strategies to protect your joints

-Teach "energy conservation strategies", which are ways of pacing yourself and making stuff like chores easier

-Help you explore options for non-medication pain relief

-Get you adaptive equipment (this can be everything from an adapted pencil, to a wheelchair, although not all OT's can do the wheelchair process)

-Figure out how to change the setup of your home/work/school to make it work better for you

-Teach you new, easier ways to do your daily activities. For example, I learned how to fold laundry in a way that took less energy and was nicer to my shoulders

-Work on strategies that support your mental health

-Come up with a plan to work on your overall stamina and balance, although if you're seeing PT as well, they'll likely take the lead on this

-Give you strategies to help with sleep, if you're having any trouble there. They might also touch on nutrition.

-Help you advocate for yourself