#i need a doctor that knows what they're doing with connective tissue issues

[iamnotlookingidonotseeit]

every fucking day it's a new thing with this body. Like girl* how did you manage to strain your fucking elbow

[korya-elana]

Your doctor isn't always right.

This'll be a long one. No tl;dr

I see a lot of rhetoric about "doctor shopping" and "your doctor is obviously right, quit trying to claim an illness that isn't yours" and other such nonsense. So I'm here to tell you why these guys suck and why they're wrong.

I'd like everyone to keep in mind that I am studying brain science, I readily admit that, due to my health issues, I could have died without my doctors. I am firmly pro-science and pro-medicine. However.

I was actually going to type up this post a few weeks back and then the universe smacked me with a relevant situation. For some context, I recently moved back to Ohio. I had lived in NY for the past few years due to traumatic circumstances and had not received any care for my disabilities at the time. Considering one of my issues is Ehlers-Danlos Syndrome (my joints and connective tissue are loosey-goosey and don't work right) and EDS causes me severe pain from constant rib dislocations/subluxations, I went to go get pain management from a specialist as soon as I was back.

This "specialist" (literally the head of the relevant department) told me there was no way that I had EDS despite my relevant testing and family history, started testing me for the WRONG illness (Marfan's, which you can tell by looking at me I do not have) and then, despite his admittance he doesn't know much about EDS, proclaimed I don't have it and it wasn't worth seeking any help. And he obviously did shit for my pain. He also said this about my proven autoimmunity.

Fast forward to two weeks ago. At the ripe old age of 30 and relatively good health despite my disabilities, I had a real stroke. Not only is this highly unusual for my age and health, it was a very, very specific type of stroke that is highly indicative of a much more dangerous type of EDS than my previous specialists had ever thought. And now I need extremely expensive and hard-to-get approved genetic testing. I have therapies several times a week and in a month I see a neurologist. Specifically, a stroke specialist where I will likely be the youngest person in the waiting room by at least 20 years.

This doctor could have killed me. He could have permanently crippled me beyond repair due to his advice. I legitimately thought I was dying. I have lost parts of my life and activities vital to my sense of self that I will never get back and I am very early on a very long road to recovery. Because my doctor was wrong. And I'll sure as shit be suing him.

So if you think your doctor is wrong, I want you to ignore every single asshole tumblerite telling you that your doctor knows best and knows better than you do. Seek that second opinion. Or your third! Or your fourth! I went through five doctors before I found one that actually knew what he was talking about and could help my dysautonomia symptoms for real. There is merit to talking about diagnosis hunting and being more sure than you should be. But doctors are not perfect. Malpractice kills people. Follow your gut feeling and find someone who knows how to talk about it. Shutting up and ignoring that feeling could get you hurt.

[mental-illness-bingo]

CW Health Vent

All of these doctor's appointments are stacking on top of each other and everything's coming so fast and part of it, of course, *is* my fault because I'm deciding I want to talk to my doctors about what I need help with BUT

Consider that I chose to tell them about the POTS 5-6 months ago, waited months for that appointment, and had to wait another 2 months for this next one at the end of the month. So for me it's been half a year or more since I felt comfortable talking about that before I was ready to ask about the EDS (the connective tissue one Idk how to spell the whole thing yet) symptoms.

Consider that I started talking about the last mental health issues I got diagnosed with over a year ago, but my therapist kind of shrugged it off for a while. So it's been well over a year that I've been ready to talk about the ASPD symptoms, and I wasn't ready to talk about autism but it was noticed by my providers (fair), and now I'm ready to talk about the dissociative symptoms/my system.

I went through normal lengths of time before opening up about my struggles with my doctors, but the way the system and specialists especially functions, it's all added up to be happening all at once right now (this month).

The doctors aren't even doing anything wrong! They're great, helpful people now that I've made sure to change doctors if I'm being disrespected. They want me to feel better and/or at least have an answer, and they are working with me as best they can to find that for me. But it takes time and effort that is so hard to have for one issue by itself let alone all of these.

Not to mention the reason I am asking for help at all from them is because I am no longer functioning properly and the issues are going from "ugh I work a lil harder to do what I need to and work is impossible" to "daily functioning even without work is becoming increasingly impossible". So all this effort and extra spoons I need to find are required of me when I have the least spoons I've ever had.

I can't hide it anymore. I am fighting to hold this body together with a bottle of school glue and half a roll of scotch tape./figuratively I *literally* tied my thumb joint into place with ribbon a couple weeks ago because it hurt so bad. My partner is buying me another cane because sometimes I can't even make it to where the first one is.

And now I've gotta make a rheumatologist appointment, too. It's just... so much. SO much.

I know that I am so privileged to be able to get this help and see these doctors all at once like this. It's a huge privilege to be able to access help, let alone to only be stressed emotionally by all the help I am accessing. And it is still really fucking hard...

[roseband]

there’s a graphic/web designer job at a health care nonprofit that i actively care about and i feel like i wanna apply lmao even though i just get my benefits from work on wednesday LMAO like??? it’s in cali/dc only but???????

[aquadraco20]

Things about pregnancy/childbirth/taking care of a newborn that no one talks about (or at least I didn't know until I experienced it)

When you're pregnant, you will be thirsty all the time, and you should be drinking a ton of water. If you think you should drink more water now, your mouth and throat will be bone dry on a regular basis.

If you do not drink enough, you wont have enough fluid in utero and may have to be induced. Think about your baby as a fish in a tank. Gotta make sure there's enough water. They do go to the bathroom in there.

As your baby grows, it puts pressure on all your other organs. That's obvious. What I didnt know is that this starts to impede your ability to empty your bladder and to poop. You will have to pee constantly (in addition to the water drinking bit), but I had to take a laxative/softener because it was debilitatingly painful to poop.

Tale an iron supplement! Good god, this was the biggest thing for me during my pregnancy. I was actually collapsing because I was iron deficient. Listen to your doctor. Take an iron supplement. They're available as gummies.

And while you're at it, take your prenatals, and try to start taking them before you become pregnant. If you have other health issues, like me, talk to your other doctors before you become pregnant. You may need to change your medication.

I worked until one week before my due date. Pregnancy is tiring, but bearable. You'll be going to bed early whether you want to or not, and you will be getting up frequently to pee at night as you get close.

There's multiple youtube series that go week by week. Watch them.

As for childbirth, it is a 12+ hour affair. However, 90% of that time is labor and not pushing. Labor is very painful, but manageable with medication and counter pressure. I did not have an epidural- they have a gas that helps a lot. It doesn't knock you out, just numbs the pain, and only when you put the mask over your face. You feel normal when the mask is removed.

Counter pressure is when your spouse or a member of the medical team puts pressure on your hips to help widen them. Your hips will kind of operate like a hinge. Counter pressure helps immensely.

Contractions happens in waves. You'll experience a wave of pain that peaks and then goes away. In the beginning, you may even be able to sleep while I labor. It will increase in intensity as time passes.

10% of labor is the pushing. It hurts as much as people say (or dont say). But it is over relatively quickly (I was pushing for 45 minutes). When you push, you are using the same muscles as when you poop. It feels like you're taking the biggest poop of your life.

You're going to pee/poop on the table/nurses. This is normal. They expect it.

Afterwards, they're going to want you to stay in the hospital for 2-3 days. You're not supposed to take your own medication (they will provide it for you). I assume this is because you are under their care.

Breastfeeding is hard! Both for you and your baby. You'd think as a defining characteristic of our species this would be easier, but it isnt!

You have to angle your boob correctly in their mouth, and potentially squeeze your areola, all while holding their body and head. It's very tricky. Ask for help, and continue asking for help.

My problem with breastfeeding wasnt just on my end- my baby would connect, then either not nurse, fall asleep, or get frustrated. At one month into childcare, I've kind of given up on breastfeeding. However! That doesnt mean I'm using formula.

YOUR INSURANCE MAY INCLUDE A FREE BREAST PUMP. ASK ABOUT IT!

My life would not be the same without my pump.

Also, your milk ducts may get a clog! No one told me about this. Its painful and it forms a lump. It is not cancer, it's a clog. It happens if you dont nurse enough, dont drink enough water, dont bathe enough, or your bra is too tight. Quite honestly, just go shirtless for as long as you can.

Taking care of a newborn, at least for me, is a cycle of change diaper, feed, burp, sleep. Rely on your spouse or friend. Sleep when you can. You will be up at night.

Dry your baby's butt with a tissue after wiping them. If you dont dry them, they get diaper rash. Use vaseline after drying them. Get your supplies ready before you take off their diaper. Put the new diaper under the old one in case they go while you're changing them.

Babies get acne! This is normal, and there isnt a lot you can do about it.

Ask about gas drops. Babies have very little control over their digestive system. Gas has been the most difficult need to address.

They dont hate you. They cant show you that they love you, but they do. They physically cannot express anything besides distress in the beginning. Do not beat yourself up.

You will experience mood swings. Talk about it, be open about them. They are normal. Rely on others.

Your baby will very quickly drink 4 ounces/125 ml in one sitting. You will feel like there's no way you can produce that much. You will. Pump/nurse frequently and until your boobs are empty, and go a little longer. Your body will meet the demand you present to it. If your baby isnt hungry, pump. Empty your boobs.

Get a PUMPING bra. Nursing bras and pumping bras are different. If you're pumping, get a pumping bra. It holds the collectors so you dont have to.

Most police stations will check your car seat to make sure it's installed properly. You will not be able to leave the hospital with your baby unless you have a properly installed car seat.

Learn about safe sleep and get some sleep sacks! Seriously, sleep sacks are awesome. Get some with swaddle wings and without. Once they start to roll, you arent supposed to swaddle them.

Get a little bouncer/chair that vibrates. They love it. Game changer.

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