Rising From The Ashes

Women who suffer bad cramps are told cramps shouldn't affect school/work/etc, but no one ever investigates further because no one can possibly know if what someone experiences is just typical pain or something much worse.

Well after 15 years of stage 4 treatment-resistant endometriosis that came with pain as bad as, if not worse than, actual labor contractions every month, all the while being told I was 'typical' and 'just had bad cramps', I've finally been healed (another post for another time). I have had what everyone describes as the elusive 'normal period pain' for several months now, and I am begging you to look me in the eyes and listen because I need everyone who can hear this to hear this.

I have been on both sides of this. I have the hard-earned knowledge of what a period 'should' feel like.

If you have to put in any effort to hide your cramps, you need to get help.

Even during of the PEAK OF CRAMPING (i.e., as bad as your cramps possibly get), you should still be able to stand, speak, walk, eat, work, and sleep with no problems. These tasks should require very-little-to-no extra effort beyond what you would normally do when you aren't on your period. When you do these things, you should feel grumpy and a little bit icky and maybe a twinge of nerves and NOTHING MORE.

If you have to sit in the corner and hope no one approaches you because you can't speak or stand without showing pain, even slightly, you need to get help. If your pain is showing on your face, you need to get help. And most importantly, IF YOUR PAIN DOES NOT RESPOND TO 1-2 TYLENOL OR IBUPROFEN, YOU NEED TO GET HELP.

Your period cramps should make you grumpy. Your period cramps should make you feel a little icky and tired. Your period cramps should make you feel your insides existing/moving a bit and a twinge of nerves that makes you groan slightly then the "pain" should stop there, NOTHING MORE.

If your cramps put you on the floor but you make believe you're the captain of a ship who has just been stabbed and has to hide it to fight on, and you force yourself to power through the day, please understand: you are not okay, that does not make you okay. Just because you can power through the pain doesn't mean you aren't sick. If you have to force yourself through any basic task beyond the effort it takes you to do when you aren't on your period, and I am holding your face and looking you in the eye as I say this because I need you to hear me: You aren't normal. You don't 'just have bad cramps'. You are sick and you need to get help.

Now most people will tell you if your cramps are beyond a 3 out of 10 on the pain scale, you should see a doctor. While this is usually true, you have to consider chronic pain CAN AND WILL BREAK YOUR PAIN SCALE. Most people will only compare pain they currently feel to pain they may experience one day but probably never will. "Sure these cramps feel bad now, but if I had a leg amputated with no anesthesia, that would hurt WAY worse, so this pain can't be that bad-" No. Your pain is what it is, objectively, full stop. My cramps were at a 10 out of 10 every. Single. Time. And nobody told me claiming they were a 6-8 because I thought to myself 'what if I lose a limb one day?' was completely wrong. 10 pain is 10 pain. And if there's something that hurts worse than that, guess what. The thing you are experiencing right now is still a 10 out of 10 on the pain scale. Just because you experience it every month doesn't mean it's magically not as bad is it is. And if your pain is worse than a 3 out of 10, you need to get help.

Now when I say get help, I mean find the root cause of your pain. You can't just throw drugs and hormones at it without knowing what it causing your pain. Endometriosis, fibroids, pcos, cancer, adenomyosis, polyps, thyroid issues, there is always a cause. And if you leave it untreated, it will grow and get worse to the point where it resists treatment and the drugs and hormones you've been throwing at it for years don't work anymore. You have to find a doctor that will investigate. If your doctor tells you you 'just have bad cramps' get a new doctor. I know you've been told that but please hear me: no one ever just has bad cramps. A healthy human body doesn't spontaneously cause itself pain so bad you can't stand up; there is ALWAYS a cause.

I was sick for more than 15 years. My entire life was put on hold and now I'm in my late 20s trying desperately to play catch up for everything I missed. I want to pick up 12yo me, spin her around, and tell her she doesn't have to die before she finally stops hurting. I don't want anyone to suffer the same fate I did simply because everyone told them they were normal. A little twinge of pain here and there is normal, suffering is not. I promise you your pain is real, it is not normal, and dear heavenly day I am begging you you need to get help now.

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

I've just gotten an email from a new "self-publishing platform" called Written (written.app), which is making suspiciously extravagant promises about the benefits they offer to authors. After further research, this is just "upload your book with us and we'll make it an NFT :)"

Source

If you haven't already heard the sad news, ALL JoAnn stores are closing (it was previously reported that only some stores would be closed).

Not because of the vet wrap, it's great stuff and I keep some at home myself for first aid purposes.

I believe in the shooter who killed that CEO.

I do not believe they are the same person.

I believe the NYPD is lying to us and putting it on an innocent man to prove a point.

To ignore the reality that Hitler got all of his ideas by following the US's blueprint on Indigenous and Black oppression.

Trump is copying Hitler who was copying Andrew Jackson and Jim Crow laws. It's all extremely US American and always has been.

This is literally who we are. If we want to be something else, we have to accept that we've been doing a lot of things wrong and start organizing around better ways to do things.