life-as-summer - Tumblr blog

[life-as-summer]

this user is professionally diagnosed

[life-as-summer]

[life-as-summer]

As Promised… My Spoonie App Recommendations

Flaredown:

This app was designed by patients for patients and so far im really enjoying it. It allows me to input and track the severity of specific conditions on any given day, the severity of the symptoms im experiencing as well as what types of treatment or aid ive used in a day. All of these catagories are personalized upon set up, which granted does take a bit to do if you want to get really intense with your data, and you can continue to add any new symptoms or conditions as time goes on. You also have the ability to track foods that you eat (especially helpful with trying to narrow down allergies and reactions) and tag the day. The app then presents all of this data in an easy to read and exportable chart that i plan to print and take to my next doctors appointment.

For those that have trouble remembering to fill out things like this every day, i have it set up to send an email at a set time reminding me to input my information for that day.

When you open the app after set up, you are prompted to check in with your info for that day. The first page after the prompt looks like this:

As you can see, the first page deals with conditions and asks you to rate your condition’s activity that day from innactive to extremely active on a color coordinated sliding scale. On this page you are able to add any new diagnosis at any check in and, unlike many similar apps ive seen, the number of conditions and symptoms you are able to input is unlimited.

This second page is for symptoms. As I said before the number you’re able to input is unlimited and you can create your own new catagory if one isn’t exactly what you’re looking for. The rating scale is the same as the conditions page and the chart is similarly color coded for easy visualization.

This next page deals with treatments used in a day. For me this is where i would input data on any assistance device or human assistance ive used in a day as well as track any heat and cold pack useage or rest my body has forced me to take. This section also is really helpful for tracking medications as well. You can either check off that you’ve taken your meds that day or input specific dosages of medications which, I imagine would be very helpful in the case of pain meds that need tracking.

The next two catagories share a page and deal with foods eaten in a day (though keep in mind it does not have a calorie counter so if that’s something you’re looking for you would need a separate app) and tags that i use to track home im feeling emotionally on a given day. Like the other categories you are able to personalize the selections and the app does remember youre most recent ones for easy adding.

The last two photos are of the charts that are produced from all your input data. Each dot represents a separate day and is clearly plotted on a line graph to show daily change in condition or symptom activity. Both the symptoms and conditions themselves are represented on the line graph whereas in my experience the treatment just shows whether or not that treatment was used on a specific day.

Flaredown does also have a journal function and a pattern function to help you track whether specific activities or foods have an impact on your condition. I havent used either of these functions yet or the connect function that allows you to chat with other users but if you do, let me know what you think!

Tally:

This app is very straightforward and simply keeps tally of whatever information you want to count. Personally i use the app to track twitches and muscle tremors and how many times i lose balance/ fall in a day.

My set up looks like this and is very simple however, this app would be great for tracking water intake, any symptom occurrences you may have in a day as well as helping to keep track of any medications you may take. This information, is also presented in a simple color coordinated graph that you can view in a week window in a bar graph format that can be downloaded or emailed and printed. Unfortunately i seem to have hit my photo limit and am unable to show you what the graph looks like.

In the IPhone this app does have a widget available from the lockscreen though im not sure if android has a comparable feature. Ive found it very convenient to keep track of occurrences throughout the day without having to go through my phone.

Both of these apps have functions that ive found to be very useful and i hope you will think so as well. If you have any other recommendations I’d love to hear them!

Searching the Stars ✨

Kenna

For those who showed interest or requested to be tagged:

@silverloveless @magicmoon65 @overexcitedneurons @sleepyhoneyy @oversensitivebrat

[life-as-summer]

FUCK this disability and FUCK this society and FUCK all these gaslighting miseducated doctors and FUCK society for being this way. I feel so goddamn isolated and worthless and incapable and i have no idea what im supposed to do or how im supposed to get the support that I need. My life is crumbling to pieces and it feels like nobody really notices or cares or wants to do anything about it

[life-as-summer]

[life-as-summer]

[life-as-summer]

My eyes haven't been able to focus properly for the past several days (it takes considerable conscious effort and adjustment so I've just been focusing enough that I can read) and it's getting really annoying especially since I have a job interview tomorrow and just the fact that I spend a lot of my time reading.

I got new glasses recently and I really hope that's not the reason this is happening. But either way I have to get the new glasses adjusted so I can mention it to them when I go in.

[life-as-summer]

Being disabled isn’t political, it’s our existence

Being disabled isn’t political, it’s our existence

Being disabled isn’t political, it’s our existence

[life-as-summer]

Read this

[life-as-summer]

[a screenshot of a tweet from username: skye doesn’t want advice 🏳️⚧ @disabilisaur

tweet text: “what gets me about my disability isn’t that I can’t do stuff.

it's that I DON'T KNOW if I'll be able to do stuff.

doing a thing can either put me in bed for days,

it can be totally fine, no big deal,

or randomly make me feel BETTER.

24 hours later the rules change again.” end image description]

[life-as-summer]

Can someone turn of this fuckin' hot weather? I actually need to get some shit done and it isn't compatible with my POTS. System keeps crashing!!

[life-as-summer]

POTS got me like.

[life-as-summer]

Why does my throat hurt sooo bad? :((((

[life-as-summer]

every EDS expert: EDS is a nuanced illness and often requires a lot of testing because patients can have symptoms or problems that don’t present obviously or are flat out hard to diagnose. several of these issues can stack up and are ultimately disabling.

Professionals who are only marginally familiar with EDS: you don’t have this obvious and extreme and deadly comorbidity, so no further testing or examination is necessary. :)

[life-as-summer]

i_did_something_bad.mp3

[life-as-summer]

fuck your doctor’s feelings. this sounds harsh but it needs to be. i cannot count the number of times i have encountered people who were not being adequately treated by their doctors, often not even diagnosed, often not even being believed, but were too afraid to switch doctors because of their doctor’s feelings. people are suffering and sometimes dying because they are afraid of hurting the feelings of someone who is failing at their job. not all doctors are equally qualified to treat all conditions, not all doctors are going to be good for every patient, and not all doctors are good at their jobs at all.

your doctor’s job is to treat you and if they suck at their job, get a new one. get as many as it takes. their feelings are not more important than your life and well-being.

[life-as-summer]

Well she hadnt made any referrals or anything so I directly asked my primary care for a referral to Rheumatology so I can talk to them about EDS; turns out that Ka*ser has a dumbass policy where you need to have a diagnosis before seeing a rheumatologist. Lmao.

If anyone has got an EDS diagnosis with Kaiser pls hmu if u have advice or just to share ur story bc im fuckin. Pissed off at my pcp and at my body and life in general lmao