lost-spoons - Tumblr blog

[lost-spoons]

So I had a small mental breakdown while listening to this in the car. I wasn't sure why I started cry-laughing the lyrics (in my false vocal-cord voice), but I did. I think it's cause if you listen to the words, it describes (at least for me) the life you live and the exhaustion of having a chronic illnesses and disabilities, with the whole happy toon going in the background, while also having nothing to do with anything medical. The song doesn't single out any medical issues, it's just a song, and I like that.

Anyway, I just wanted to recommend it for my fellow POTS, EDS, VCD, migraine, chronicly ill, disabled people.

🎵 🎶 Music Therapy 🎶 🎵

[lost-spoons]

“ew thick water gross and weird” ITS NOT FUCKING FOR YOU!!!!! “ew why buy pre-cut vegetables when you can cut your own” ITS NOT FUCKING FOR YOU!!!!!! “I don’t need a device to help me put my socks on I’m not lazy” ITS NOT FUCKING FOR YOU !!!!!!!!! “Why drink liquid meals when you can cook them” ITS!!!!! NOT!!!!!! FOR!!!!!! YOU!!!!!!!!

[lost-spoons]

¿feeling disabled by my own disabilities? a tragedy. never could've seen this coming.

[lost-spoons]

Guess who's dropping out of this semester of college because I'm too far behind due to missing 4 weeks and then being hospitalized for an additional 3-4 days because of a migraine?

It's me!

I just heard back from the last of my teachers, cause I was hoping I could keep a class and not have to drop them all, but I also didn't want to file the paperwork multiple times, so I held back on filling till I got conformation from all of them, and I'll be filling out and sending in the paper work this week. Which sucks- but I'm luckily, still early enough that I can get a withdrawal marked instead of a fail, so there's that?

[lost-spoons]

So, I've switched to this thing called the anti-inflammatory diet or the mediterranean diet. The hope is that I'll be less nausea with it and maybe get some other good effects cause it's called anti-inflammatory for a reason. But does anyone have any good recipes for it?

Specifically bready things and sweet things. I usually have a lot of those two, but it's not really recommended so alternative or approved versions would be appreciated!

[lost-spoons]

Update!

So I was hospitalized for a bit over 80 hours so that the medical people could run something called dhe protocol in order to break my migraine that lasted bout 4ish weeks. Not fun at all, the meds themselves bring the pain up a notch then a few hours later it drops below the original number, like 9 to 9.5 or 10 then down to an 8.5 or 8 on the pain scale.

Funny story i got out of this/an odd way to learn something.

I also have a medical condition called POTS syndrome, and one of the times the nurse gave me a iv injection of Benadryl I had just gotten back from using the bathroom so my heart rate was going fast so the meds ran through my system faster, which caused me to feel like I just woke up for anesthesia. Literally, as I've woke up from a different medical thing where they had used anesthesia and it felt the same as the Benadryl in that moment.

Anyways- I'll be seeing my neurologist soon for a follow up and have a referral for a psychiatrist plus need meds to try if I get another migraine so we'll see how this goes

I have a question for others who also have POTS and EDS. Is it common to get long lasting migraines? Cause I've gad the same one going kn 3 weeks. This is a verg neq symptom/medical condition for me. The worst part if it js the light sensitivity. Lights caue my brain to be stabbed very sharply in the front kf my head. It's horrible and has made jt so I ant actually look at any electronics for more then a quick glance on the dimmest setting. I've never been do happy to have the keyboard memorized. It means i cab write stuff like this with my eyes clsoe after I get to the webpage I need to be kn.

Is there anything to get rid of the migraine? Or at the very least to get rid if the sensitivity issue, cause I already have enough issues with my vision, and the additional one is make me unable to do anything not ro mention that it's making my brain not functioning properly. I do sudoku to hell my brain stay focus and cause it's fun, j like minding the patterns, but since week 2 started of the migraine. I can't thing enough to do any of the puzzles.

Thatvs not even mentioning the other new medical thing that I've been trying to ignore. A lot of the shadows in the conor kf my eye or in the black spots that invalid my vison, have been Turing into monsters. It's like I'm hallucinating or gone insane but thats not right. It doesn't line up for the family history. There not much else to aff update wise as my appointment with my neurological specialist isn't until April so we shall see how this goesa

[lost-spoons]

I have a question for others who also have POTS and EDS. Is it common to get long lasting migraines? Cause I've gad the same one going kn 3 weeks. This is a verg neq symptom/medical condition for me. The worst part if it js the light sensitivity. Lights caue my brain to be stabbed very sharply in the front kf my head. It's horrible and has made jt so I ant actually look at any electronics for more then a quick glance on the dimmest setting. I've never been do happy to have the keyboard memorized. It means i cab write stuff like this with my eyes clsoe after I get to the webpage I need to be kn.

Is there anything to get rid of the migraine? Or at the very least to get rid if the sensitivity issue, cause I already have enough issues with my vision, and the additional one is make me unable to do anything not ro mention that it's making my brain not functioning properly. I do sudoku to hell my brain stay focus and cause it's fun, j like minding the patterns, but since week 2 started of the migraine. I can't thing enough to do any of the puzzles.

Thatvs not even mentioning the other new medical thing that I've been trying to ignore. A lot of the shadows in the conor kf my eye or in the black spots that invalid my vison, have been Turing into monsters. It's like I'm hallucinating or gone insane but thats not right. It doesn't line up for the family history. There not much else to aff update wise as my appointment with my neurological specialist isn't until April so we shall see how this goesa

[lost-spoons]

I use mobility aids such as forearme crutches and braces on my ankles and knees. The ankle ones hold up well (they're a wrapping type with a single point of velcro at the end of the wrap) and I've only had to replace them 1 time so far, but my knee braces have been replaced 3 or 4 times already, due to over working the velcro.

The type I currently use is a Moxita knee braces with side stabilizers. It does what I need it to do but needs to be replaced often. The reason for the velcro stripping that happens to them is because I have to take them off when I'm sitting or have my knees bent for a long period of time, and anytime I want to stand I need to put them back on.

I use the braces for patella instability. My crutches help to lessen the amount of weight I put on them, but without the brace stability, I can't stand without my knees buckling and the knee cap sliding out of place.

I refuse to get surgery for this as the issue will reappear over and over due to the genetic condition.

So, does anyone have any recommendations on knee braces?

[lost-spoons]

I'm honestly not sure if I've mentioned this on here before, but here we go.

I've been looking into getting a service dog for a few years. What breed would be best for the tasks I need, if I should get a program trained dog or if I should owner train, what it costs to get said service dog and anything they need or would like, how to take care of a dog, what are the laws around service dog prospects and housing, what are the laws for service dogs, etc. etc.

Up until now, it's all been more of a thought experiment than anything else because my father established a "No Dogs Under My Roof" policy a long time ago, and despite a service dog being medical equipment, the answer to if I could get one is a hard "Not Under My Roof"

But! We're finally down to the last year or two of community college before I transfer to a 4 year where I'll be living on my own and can thus get a dog. So I'll be looking into breeders to see what their wait lists are like and check to make sure the breeder I decide to go with is actually an ethical breeder.

I've debated on breeds for a while. Poodles are hypoallergenic but require a lot of hair maintenance and will matte up fairly quickly if I forget to brush them due to a flare-up, so they're a no. Doberman seemed like a good fit as they met most of my requirements. However, I was informed that they're a velcro breed that are very protective, which makes sense since they are breed to be guard dogs, but that doesn't work if i need a strangers help. Goldens and labs are quite similar in most things regarding my list of requirements but didn't end up being my final choice.

I've decided to go with German Shepherds for the breed, as I need mobility, medical alert, and psychiatric tasks. That's quite a bit for one dog, but German Shepherds are breed specifically to be working dogs with varying jobs, so while I'll need to be careful with training to keep them from burning out as a puppy, they're my best bet.

I've decided on owner training supplemented with a professional trainer's support/assistance.

The mobility tasks in question aren't weight bareing, and even if they were, I'm aware that type of training doesn't start before the vet okays it around 2 or so years old. Sometimes, my vision stops working, or I'll get horribe brain fog making me very confused, and I can't bend down to pick things up off the floor unless I'm sitting, so think along those lines for mobility tasks.

The medical alert is for POTS and maybe migraines. I'm not sure how migraine alerts work yet, i still need to look into that one, but I know how to do the POTS ones.

The psychiatric tasks are to tell me if I'm displaying anxious habits cause I don't notice them and can't feel when I am due to a disconnect in my brain from physical reaction and emotional reaction. I react physically but can't emotionally, which means i can have the bodily reaction of a panic attack and all the issues that creates but I think im perfectly fine. Which is oh so fun to deal with (can you hear the sarcasm?) Plus a few other things I don't feel like sharing that I need help with.

If anyone has anything helpful to add, please do. I've looked into things, but research can only get you so far

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I'm once again in the emerging room after taking a surprise ambulance trip because of an over reaction of the people around me when I collapsed.

I'm honestly not sure what to do, cause I found out why they overrate, but there not really a fix for it. The reason is that my episodes look bad. They look way worse then it actually is.

I collapsed to the floor, and I walk with forearm crutches so it's loud when I do. Then I'm immediately dry coughing and I can't stop, so I'm wheezing, which is another loud thing that sounds bad. I move to a recover position which it pretty much the fetal position to help with my blood pressure and heart rate, it tightens the arteries in the hips a bit which helps.

So you have this girl curled up on the floor, coughing harshly, wheezing, can't talk, eyes half closed from exhaustion.

Not the best picture, I know, but I tell them no ambulance and call my mother as medical proxy to speak on my behalf, but they convince her it's bad enough for an ambulance.

So I'm not sure what else I can do.

[lost-spoons]

I'm going on a plane trip that around 14 hours with connecting flights- wish me luck!

My father will be coming with me, seeing as Im visiting my Mémère, who is my father's Mom, so he'll be helping me, but flights with POTS hEDS VCD sucks. I'm also going somewhere that's quite cold this time of year, as in snow everywhere cold, so I'm not to excited about that but am excited to see my Mémère since I haven't seen her in person in a while.

I'm taking IV hydration, my portable nebulizer, inhaler, epipen, and emergency meds in my carry-on. I also use forearm crutches, so we've asked for accommodations. Hopefully, that all helps, but I suppose we shall see.

[lost-spoons]

I just realized that I never informed you guys that I finished all of them.

I got an 'A' in ASL, and a 'C' in the other 2 classes

This school semester ends around the first week of December, and I have around two dozen missing assignments times three (number of classes) that I need to do before December first.

Medieval Art History

ASL 1

Statistics

The goal is to get a 'C' that it, I don't have higher hopes then that.

Stil, wish me luck.

[lost-spoons]

Every time I go to acupuncture, the same nurse checks me in and does all my blood pressure, heart rate, oxygen checks, so they know I can't talk but can hear and talk to me the whole time about whatever they have to say for medical purposes or just asking about my day or telling me about theirs.

Today however, I was checked in by a new nurse. She talked at first, but then I signed that I couldn't speak, just so she knows I wasn't ignoring her when I don't answer. The signs were quite obvious as to what I'm saying, by the way. So after I tell her i can't talk, she gets quite as she goes through the checks, and I realize my mistake. So I stop the nurse and grab her attention with a wave of my hand and point to my ear then both signed yes and nodded my head, then pointed to my mouth and shook my head.

She was a bit flustered at that fumble in communications but recovered well and we both had a laugh about it. The nurse cares on with her tasks, talking this time, and we have a conversation about her tattoo, because they were beautiful.

[lost-spoons]

Add your username into the picture and you’re practically a kitchen cabinet.

Oh my God- that's hilarious! And I thought my joke was good!

[Image: I'm pan, demiromantic, ace. That's right, I'm someone with POTS who is pan.]

[lost-spoons]

THIS^^^

I fainted in class at my college, and everyone freaked out and overreacted! Stuff like this is important for everyone to know, or at least have a vague understanding of it!

FAINTING 101

As someone who faints pretty regularly I’m writing this so people have some accurate information and know what to do if someone faints.

First off: there are many reasons a person may faint.

It can be due to a medical condition or as an emotional response to something distressing like seeing blood.

Fainting usually does not look as pretty or romantic as it does in the movies and TV shows.

I’ve had my parents explain that when I faint it looks like a rag doll falling to the ground or me slumping over.

Usually when someone faints, they lose control of their muscles causing them to fall to the ground, unconscious.

This can result from not having enough blood flow to the brain, so the body is trying to fix this by getting you to be horizontal.

Some people might only be unconscious long enough to lose control of their muscles and gain consciousness as they’re falling.

Someone who has fainted should “wake up” within about 30 seconds. They may be confused and it may take a bit for them to orient themselves in the space.

The important thing is to remain calm and assure them that they are safe.

If someone takes longer than about a minute to two minutes to rouse from being unconscious you should call local emergency medical services. Especially if you believe this person has hit their head or they are having seizure like symptoms.

While you’re waiting for help to arrive and the person is unconscious:

Check their pulse

Check to make sure they’re breathing and their airways are not obstructed

Don’t leave them alone, and make sure they are protected until help arrives.

Note: You should take someone to emergency room if fainting is not a regular occurrence. I would exercise caution because some people faint frequently because of a medical condition (like me!) so I’d wait before immediately rushing them to the hospital.

(this is important: I am not a medical professional but I do faint pretty regularly.)

[lost-spoons]

Sometimes, being disabled means being locked in a car with the little pet mode thing on while your partner runs into the store to grab you a snack. /j

All jokes aside, have I mentioned that I love my partner very much 🥰

(Thank you for putting up with me being a simp)

[lost-spoons]

I love my partner very much. They are so amazing🥰

That's it- that's the post.

(I'm Pan, Demi-romantic, Ace)

That's right, I'm someone with POTS and I'm Pan