Sick and Scared

I have some rare anomalies from the birth, which led to misshaping and misplacing of some of my internals. I don't want to talk about it much, but it lead to a lot of inconvenience (you can guess!) and is one of the reason of my chronical problems with health. I don't want to specify for now; maybe I'll want to talk in more details later, or maybe not.
Also I had 34 teeth-with-roots instead of 32, which made my teeth very misshapen and very vulnerable to illnesses. So during my life, I spent an enormous amount of money to dentists, and now all my teeth have a seals. I still have no brackets, because they cost like hell, and there always were another things around, which required money. I know, that eventually all lesser expenses of current treatments of teeth cost me more than brackets in sum. I know... I just rarely have so much money at once and I don't like to take a payment by instalments, because my income is unstable (again, because of poor health in general, which prevents me from having a good full-time job more than for several months in a row). I hope I'll be able to afford a brackets after working at my current work.

You aren't alone in fighting nasty chronicle problems with health. But you see, we can live with it. Not all people can be healthy, but I want to believe that unhealthy people can at least minimize bad consequences of their state and be happy, too.

I’m so sorry to hear all this and I wish that I could support you with more that my best wishes.

I also like to thank you @tired_programmer for sharing. This tribute to the trustworthiness of the forum and the community.

It also hurts me to hear about these problems around the world where people don’t get their proper help because of finance.

Best wishes from me to all of you out there.

Sorry to hear that. I always say health is the most important thing ever. As soon as it is taken away, you suffer gretly. I personally suffer from IBS and misophonia. Both are not deadly, but have had severe impact on my life (and doctors/people in general tend to take it not seriously, awesome...).

Mmm... no. In my opinion, the most important thing ever is the ability of your brain to produce serotonin, dopamine and - most important - endorphins. And you also should have a ways to kill a pain, of course. If both are possible, you can be happy (well, theoretically).

I'm so sorry to hear about your ongoing medical issues. My mom also needs an expensive medication for an ongoing problem and the best they could do was give her a coupon for a good discount but it was only for so long. I don't know if she is still using it or not though haven't talked to her about it recently.

I don't really have an ongoing issue. My health issues have been from when I was trying to get pregnant and that hasn't gone well at all. It caused a lot of emotional, mental, and physical pain. I don't even know if I really want kids anyway so I've given up. It's much less stressful.

Up until last summer I didn't know chemotherapy could be used for things that aren't cancerous. Apparently, it can also be used for removing embryo cells? I guess? from where they shouldn't be. I got to learn that the fun way. Luckily one shot was all I needed.

I am so sorry to hear the struggles you're facing! It's incredibly frustrating having something that can possibly help you be just out of your grasp due to bureaucracy. If it's something this rare, it's not like your doctor's making sh*t up to dole out pills. Our system in the US (I'm assuming you're in the US) is so messed up and needs a major overhaul (yeah, I'm rehashing what tons of people have said.)

I really do wish I could help in some way. When I was a kid, Mom had ulcerative colitis so bad she had to have her large intestines completely removed, and there was a period of time between the "rehook" surgery where she had a stoma and a...I think it was "g pouch?" She was in so much pain, and I was like in 3rd grade...but we tried to help the best we could. No one ever understands her dietary issues now and her current doctor apparently doesn't understand the concept of digestion issues with no large intestines.

It was hard trying to explain the whole thing to people who didn't know what it was, and what's worse is the State's insurance company folded during all the operations and my parents got stuck with the bills. It took them a long time to crawl out of debt, and they really still haven't.

Long and the short, I wish there was more besides voting that I could do to help (I have no money myself.) I hate it when people trivialize someone's suffering just because it's rare and they haven't heard of it or don't understand the specifics. I truly...truly wish the best for you in the future, and hope you're able to get what you need without incurring massive amounts of debt.

I have 2 rare chronic diseases.

I also have Lupus, which in it's rampage of my body triggered and started up another autoimmune disorder called Sjogren's Syndrome, which in IT's rampage of my body caused Arthritis (which is common but still fking frustrating cause I already have to deal with the other 2, I don't need another).

I've been on and off meds and trying all kinds of things for YEARS. One of the most frustrating things about constantly switching meds is the fact that a lot of them I have to be on for a least 3 months before the doctors can figure out if it's working or not. Currently on 7 different pills I have to take daily (sometimes 2 - 3 times a day) and one weekly injection and I hate it. (which is actually a lot less then what I used to have to take and also doesn't include vitamin supplements)

In addition to all the meds there's an over abundance of doctors appointments. One of the things sjogrens syndrome causes is dry mouth because I can't produce saliva, saliva is what helps fight bacteria and keeps your teeth clean. I have to go to the dentist monthly to get my teeth repaired because they will rot or break so quickly.

One of my meds has a chance of giving me liver failure. So I have to get monthly blood tests done.

Another med has a chance of permanently damaging my vision, so I have to go to the eye doctor every few months.

One of the meds I'm on to help with the nausea from my other meds is apparently not always in stock, so sometimes I can't take it. This medication causes me to go into extreme withdraw when I'm not taking it. Which is a painful, horrible and worthless experience. Throwing up from the increased nausea and migraines so bad that I usually end up locking myself in the bathroom to avoid all the lights and sounds in the house so I can try to sleep in the bathtub.

The only advantage I have compared to many other people that have these disorders is the fact that I live in a country with free health care. So I don't have to pay for any of these medications or doctors appointments and as a result avoid the crippling debt these diseases are known put people and their families in.

The feeling that there is NOTHING that I could do to fix this / make myself healthier or that there is nothing I could have done to prevent it just makes me feel absolutely helpless. I don't like feeling like I can't do anything to fix what's wrong, and the fact that things will be like this for me for the rest of my life is painfully depressing and constantly keep me up at night. Combine that with the thoughts that I take so many meds and resources to attempt to keep around when I contribute nothing really important to society, I'll start to get thoughts/debates in my head on why at this point I'm bothering to keep being alive.

I do not relate to this, but that sounds dreadful. I hope you quickly find something that works so you can feel better. And don’t stop searching!

My mother has a neurological disorder that still hasn't been given an accurate label. It causes her terrible migraines and headaches, and messes with her ability to think critically/logically a lot.

She's deteriorating, having migraines more and more frequently whenever she encounters ANY stress. On top of that, she's becoming paranoid and erratic. She can't handle confrontation without getting very, very emotional and she can't form reasonable opinions half of the time.

She's not even 40 years old yet and she's basically wasting away mentally with some kind of neurological condition that the doctor doesn't know how to treat. She's been in for all kinds of tests and scans. It's hard to work with her brain, too, because she's hormonally intersex (has a high level of testosterone compared to the normal amount for women) and as a result it's hard to understand her brain's hormonal levels.

It's scary seeing her get sicker over time. She's become very difficult to handle sometimes, because her migraine episodes cause her so much pain and suffering. The fact she's starting to develop the mindset of a conspiracy theorist doesn't ease my nerves any either.

I also have PTSD that's very erratic. I know what it's like to have a chronic condition that causes you a great deal of physical and mental strain. Sometimes my triggers are so weirdly specific, people will say a normal phrase or word or even just touch me in a certain way and I'll have a very exhausting and sometimes painful panic episode.
It's caused me heart palpitations before, as well as blunt force injuries from losing muscle control... I also crash really badly and become very sick sometimes after a panic attack.
Whilst PTSD isn't that rare it is unbelievably painful and the stigma that "only veterans have real PTSD" harms me too because it makes me afraid of being judged all the time.

It's really good to talk to someone with a similar struggle... Because it becomes hard to even mention trauma without somebody misunderstanding and being totally rude about it.
I have PTSD from an abusive parent, and unfortunately RTS as well. I can be triggered by a phrase one of my abusers said during a violent situation, or a flavour can bring back a memory of being force fed, a sudden raise of voice can get to me or even the wrong kind of physical contact can immediately get me. I tend to avoid physical contact on specific areas like wrists and neck, except with those I really trust. Even the most harmless touch can be really anxiety inducing for me, since my body immediately responds with fear that I'll be hit or dragged or worse.

The stigma that only combat violence can cause PTSD is tired and it only puts down people who suffered abuse, been attacked or even just accidentally injured. Trauma can come from anything that really shakes you up and I wish more people understood that.

I totally dig the found family vibe that name has, too. Its great to see people making a difference for each other.

Hey there other PTSD survivors! I knew I wasn't alone. (I'm actually writing about that, to help with the stigma and all).
PTSD, while far from deadly and overall liveable, came with a bunch of other issues for me. I have allergic reactions to water on my skin (including sweat, tears, rain...), endometriosis, anxiety disorders, sciatica, mood disorders, social phobia, depression (of course) and other minor stuff that makes life hard without needing particular medical care.
The stigma is real, the guilt is real, existence is pain, but hey I'm alive, might as well try and make the best of it, right? Even if it means I can't spend more than 30 minutes in bus or train, need to wear earmuffs even in summer and can't go to the movies. Who needs the movies anyways, I read books.

Venting is necessary from time to time.