Lizzy | Life with EDS & POTS

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Taking your medications is self care! It means you care about yourself and your well being. It shows love and compassion towards yourself.

Whether the medication is antidepressants, pain killers, muscle relaxants, nausea meds, stimulants, etc, you deserve to take the things that help you.

I used to be totally opposed to taking any sort of medication. I am now best friends with the pharmacist ?. I do have to admit that I definitely get embarrassed at the amount of times I see my pharmacist.. again.

I try to remind myself that since I started taking medication, my quality of life has improved SO much.

I just started stimulants for ADHD and OH MY GOSH there is a night and day difference. I have no idea how I functioned at all before.

I take a mood stabilizer for depression. I take anxiety meds. I have sleeping meds. I have antihistamines for MCAD. I have Uribel and bladder relaxants for Interstitial cystitis. I have nausea & diarrhea meds. I have meds for POTS.

When I’m leaving the house now, I always try and take some of my medications with me. I get embarrassed that I need them.

But they help me. I’m in way less physical and emotional pain now. I can function. I don’t feel as sick. My symptoms are more manageable and under control.

Take your meds today, and be kind to yourself. If you’ve been putting off getting the help you need, just remember that you deserve to feel better, and if medications are a way that help you feel better, there is no shame in that. ❤️

Taking your medications is self care! It means you care about you Read More

It’s #rarediseaseday2021

Only around 5% of people with EDS are actually diagnosed, so we don’t know how “rare” it actually is.

But my experiences with doctors and EDS... is that no one knows about it. I have to spell it out for them so they can google it in front of me, and get a blank stare back.

I think that so many of the “rare” diseases that exist are not actually... rare. I think that they are just under diagnosed. Overlooked.

I know this is sorta a weird post for rare disease day. Right now EDS is *technically* considered a rare disease.

Is that accurate? Probably not, but we also don’t know for sure how rare it actually is.

I guess my point is... maybe the rare diseases really aren’t that rare. Maybe they are not well researched. Misunderstood.

So here are a few of the “rare” diseases I have.❤️

For instance, POTS was thought to be rare; but apparently it’s just as common as MS. It’s just rarely diagnosed.

I think that rare disease day is a great time to bring awareness to medical conditions that need more attention, research, funding, & awareness.

❤️❤️

It’s #rarediseaseday2021 Only around 5% of people with EDS ar Read More

How the hell is my life less important, because I have health issues I can’t control? Why are disabled & chronically ill people being told that we are disposable?

I can’t believe the crap things I have heard this year about people with health issues. I honestly don’t think I can ever forgive some people from the things I’ve heard.

No, I shouldn’t be expected to stay home just because you can’t. No, I shouldn’t be expected to wait this out because you can’t. I shouldn’t be the one trying to fix your stupid decisions.

To not wear a mask. To not social distance. To pretend we are not living in a pandemic and expect that the vulnerable do this all by themselves because you’re too selfish to care.

I want to be living my life, too. I hate being at home 24/7, too. MY LIFE IS JUST AS IMPORTANT AS YOURS. DISABLED PEOPLE ARE NOT DISPOSABLE.

How the hell is my life less important, because I have health iss Read More

I feel like I go through the same cycle. I tell myself that I’m used to this, that I’ve been doing it for so long, that it’s not that bad. I try to convince myself that I’m fine and handling everything okay.

Probably about once or twice a month, I have a mental breakdown. I get extremely overwhelmed. It feels like I’m drowning in the pain. Drowning in the fact that this is my life, and it means I’ll always have some level of chronic pain.

It’s so hard to function at all. It’s so hard to keep going. It’s so hard. I’m exhausted, but I can’t get a break.

I feel like I go through the same cycle. I tell myself that I’m Read More

I think the hardest thing about being in chronic pain is that people... seem to think I asked for this? Or that I’m actively choosing to be in pain?

Chronic pain is not just a decision you decide to have. And if you do... that doesn’t make sense. ? The people j know that have chronic pain would do anything for it to go away.

I didn’t ask to be in pain. I didn’t ask for life to deal me these cards, but I have them. I didn’t choose this.

Stop making chronically ill people feel like they are choosing to not get better.

I think the hardest thing about being in chronic pain is that peo Read More

I’m honestly so confused how yoga became the universal recommendation by ableists.

Any thoughts on why?

Yoga won’t cure my genetic connective tissue disorder. Yoga won’t make any of my chronic illnesses disappear.

Please stop telling chronically ill people to do yoga. The next time someone tells me to I might lose my mind. ?

I’m honestly so confused how yoga became the universal recommen Read More

It’s hard enough to have no one understand. It’s hard enough to have doctors repeatedly dismiss you. It’s hard enough to get unsolicited medical advice. It’s hard enough to go through all of this.

You are ALLOWED TO BE UPSET ABOUT BEING SICK. It sucks. It really does. People need to be better at sitting in other people’s heavy emotions instead of minimizing their pain because they are uncomfortable. Over time it sends the message that we aren’t allowed to be sad about being sick.

You never get used to it. You never get used to having chronic illnesses. It gets more exhausting. Isolating. Lonely.

You’re allowed to be upset that your body doesn’t work the way you want it to. You’re allowed to be upset that you have chronic pain. You’re allowed to be upset that your life looks different from your friends.

You are allowed to feel it all. All of it.

I’m so sorry if people have convinced you to think otherwise. Everything you’re feeling is valid. Don’t listen to the ableists. Don’t listen to the internalized ableism that says otherwise.

You are allowed to be upset.❤️

It’s hard enough to have no one understand. It’s hard enough Read More

I can’t even imagine how hard it is to be a doctor. I’ve heard that it’s a guessing game. I don’t expect them to have all the answers.

However, I DO expect them to try more tests when everything comes back normal. I DO expect them to believe their patients when the tests come back normal. I DO expect them to take their patients seriously, and to stop gaslighting them.

I DO expect them to send a referral to someone else if they don’t have other ideas. I DO expect them to tell their patients that they believe them.

You lose absolutely nothing by telling your patients that you believe them.

I am finally getting a really good team of medical professionals who validate me, and believe me. It’s so nice to know that they are on my side, fighting with me, instead of against me.

It shouldn’t have taken 14 years to find this. It shouldn’t have taken this long to just be believed. It’s really not that hard. Even if you don’t know what’s wrong, you can still validate and believe your patients.

Doctors need to do better.

I can’t even imagine how hard it is to be a doctor. I’ve hear Read More