u/Ambitious-Shift-5641

A weird title, isn't it. Now let me explain. I had this Fibromyalgia diagnosis for a long time, because everything escalated and I was getting diagnosed with Ehlers Danlos Syndrome (txnb mutation) in a human gentics laboratory.

I do not even want to go into the details too much, while there is a strong connection between EDS and Fibromyalgia, I do not really believe that I have it, because besides of the EDS I also got diagnosed with Lipedema (had surgery), osteoarthritis (more sugeries), a heart issue, hashimotos and many more crap.

Surely you read the Lady Gaga news, that she got a surrogate, because of her Fibromylagia and hip problems. I clicked on the news article and fell into a social media rabbit hole. There are thousands of comments and many many posts where people literally just talk absolute nonsense about women with Fibromyalgia, EDS, POTS and all of the comorbid chronical problems. They invalidate like every single case of women who even have a diagnosis like this and throw them together into a pot with people who have BPD and depression. That us chronically ill women just want the benefits and mobility aids. I was baffled. So is this the world we live nowadays? A world where thousands of people trash disabled people because they are either misinformed or because they want to get tird of their hatred against women? You would also be surprised, how many other WOMEN wrote comments like this.

Sometimes people ask me, about my life and what happend till I got my diagnosis. Or in rehabilitation clinics they often ask you about how you feel of all of this and what hurts you the most or makes you depressive. And honestly, I am in pain 24/7 and exhausted since I was a little child, I wish this life to noone because of how much help I also need, it is degrading to me. But the WORST part of my whole life, is the gaslightning from the medical system (not anymore, but it used to be like this) and the opinions I read from other people on the internet. It is unbelievable hurtful to read all of this. It is also insane because it does not matter how many diagnoses or MRI pictures or proof I have apparently. Because I am just a hypochondriac still in the eyes of most people?

I did not know where else I could write this and I have noone to talk about these thoughts. I am slo sorry for my English, it is my second language. I would love to hear how other people cope with things like this.

I tried a Grok roleplay a long time ago and it was pretty good actually. Now I started one again, a few weeks ago, a Westeros roleplay. Actually it started out of a porn roleplay idea lol, but then I added more and more details and I became addicted to it.

Let's not talk about what Grok good is at, I want to tell you about a few problems I have. I did it as a project and I added plenty of source material, pictures, texts, rules. I even added a Fire&Ice PDF, so it knows about the writing style I prefer.

As soon as the chat goes on for a while, Grok is writing like a retard. I do not mean it in a funny way, it is writing in a suuuuuper weird way, in a super weird telegram style. It is forgetting important infos and instead it is repeating a lot of even weirder words. The only thing that helps for a short time is to start a new chat within the project and to remind it to write in a normal way.

It is taking all if the immersion away. Honestly the best way I can compare it: do you know when you watch a documentary in a foreign language and you use subtitles? And then you understand the subtitles but it is not your proper native language? This is it.

I swear it was not like that when I used it for the first time ages ago. I do not know a lot about A.i and I hope that you guys can give me some tipps :(

Thanks

I am a 40 year old female, living in Germany. I was a sick child, growing up to be an even sicker woman. I was diagnosed with everything under the earth, besides what I really have.

My former diagnoses were:

-Fibromalgia

-Anxiety disorder

-Psychosomatic pain

-Hashimotos (ok, this was right at least)

-Adipositas

-Being a hysteric young woman

At the age of 37, I went to a new orthopedist, as a last try.

At this point my pain was umbearable, they said it is because I am fat.

I had episodes where my heart was racing with a bpm of 240 on and off. They told me it was anxiety and send me away.

I was falling because my joints just folded away, they said I am clumsy.

I had constant blood sugar crashes, no matter what I was eating, they said It is because I don't lose weight enough.

I could not even keep myself sitting up anymore and was fighting to have some quality of life with this exhaustion, they said I am too lazy to work.

I lost a lot of weight, my legs became bigger and deformed and burned like fire, they said it is because I don't do sports.

I was getting super high puls with just standing up, they said I am dramatic.

I told the orthopedist everything. He looked at me like I am indeed crazy but he started to examine me. The look on his face changed. He ordered like 1 million X-rays on the same day. I was there for quite a long time. He came back and said he will send me to the university hospital close by, into the human genetics laboratory. He also sent me to the MRI for the knees.

The human genetics guy diagnosed me with 2 mutations: 1 that causes colon cancer and 1 tnxb mutation, that caused Ehlers-Danlos-Syndrom. What followed was more MRI visits, countless of specialists who now all of a sudden did all what they could, including a heart catheter.

The Result was:

Ehlers-Danlos-Syndrome

Insulinresistance

Lipedema and Lymphedema

The electric stimulus of my heart is fucked up

Me/cfs

Pots

Hypermobility (obviously)

Chronic gastric issues

osteoarthritis grade 4 in both knees

osteoarthritis in most joints

Swan neck deformity all fingers, also osteoarthritis

Snapping hip Syndrome

Chronic Piriformis-Syndrome

Polyneuropathy in feet and legs

Hashimotos (we knew that)

I am living in an assisted living. I have a 90% disability card and care level 2 (we call it Pflegegrad in Germany). I have to wear braces on both legs, feet and the whole right arm. Outside I am using an electrical wheelchair. I had several surgeries and many longer hospital stays.

They "fixed" the heart issue and I am taking Metformin for the Insulinresistance. I am taking around 15-20 pills each days. I have a disability assistance 3x a week and need lifelong physical therapy twice a week. I never really sleep.

I am over all of it. I am over the system, I am over everyone who was invalidating my feelings and pain. I will tell this story to the day that I die. So everyone will hear what they do or don't do to people, especially women in the health care system.

One year ago I was in a pain clinic. They helped me a lot. They listened, looked at everything and really tried. This whole clinic was full of people like me. None of them had EDS, but all of them were very sick and all of then went into the "psychosomatic" corner of the german healthcare system, before they got diagnosed. Unfortunatly, lots of these people where there for palliative pain treatment. May this be my indictment.

If you have any questions about this, go ahead.

I sometimes sell fry to a guy. Recently I sold him some Labidochromis Yellows. When he picked them up he asked if I could keep the Pseudotropheus Saulosi fry for him. I put the female with her mouth full of eggs into my breeding tank, she had 25 babies. The guy said he does not want to take them, great. I am moving in 1 week. I only have a 240 liter tank for my malawis, with around 16 fish.

I posted the fish everywhere, no one wants them. One person even said they are hybrids?!

I did not know what to do. I am too soft to cull them, so I wanted to give them a chance. I caught 10 of them and put them into the big tank. Like 7 of them got eaten within seconds. The rest is hiding. I feel like a fucking monster. Now I still have 15 left.

Hallo,

Ich (f40) stehe vor einem Problem bezüglich meiner Betreuung durch die Behindertenassistenz. Ich werde schon Jahrzehnte betreut und hatte nie überhaupt ein Problem mit den Kräften der Diakonie. Vor ca 1,5 Jahren gab es allerdings mal wieder einen Wechsel und mir wurde Frau A. zugeteilt.

Frau A. und ich, verstehen uns grundlegend erstmal gut. Allerdings kam es in dem Zeitraum zu verschiedenen Vorkommnissen, die mich mittlerweile psychisch belasten. Auch merkte ich mehr und mehr, dass wir sehr unterschiedliche Ansichten haben, zu Dingen wie Spiritualität, Medizin, Impfungen.

Ich wurde erst vor 3 Tagen (mal wieder) aus dem Krankenhaus entlassen, habe Schmerzen, bin psychisch eher geschlaucht. Sie hat mich zu einer Wohnungsbesichtigung begleitet. Danach waren wir noch kurz einkaufen und es kam wieder eines dieser unliebsamen Gespräche. Ich habe über die letzte Zeit eine Liste mit den Vorkommnissen dokumentiert:

-Unterstellung, Menschen machen Tattoos unter anderem, um sich lebendig zu fühlen und Schmerz zu spüren (als ich mein neues Tatto bekam, eine meiner letzten Freuden im Leben übrigens).

-Ein freundschaftlicher (von mir nicht unbedingt gewollter) Verkupplungsversuch mit einem anderen behinderten Klienten, der sich daraufhin ekelhaft sexuell geäußert hat.

-Die Aussage, manche Menschen würde Lebensenergie aus Krankheiten ziehen, was so weit führen kann, dass sie Krebs bekommen oder tot umfallen. Das quasi jeder Mensch seine Krankheiten selbst verursacht oder so ähnlich.

-Immer wieder winzige Anmerkungen, in dem meine Empfindungen bezüglich Behinderung/Schmerzen heruntergespielt wurden.

-Mir würde es "immer schlechter gehen", ich solle dies und jenes tun, meiner Meinung nach Abwertung von Fortschritten (sie kannte mich noch gar nicht, als es mir wesentlich schlechter ging).

-Vorschreiben wollen, ob ich den Elektrorollstuhl (ambulante Nutzerin, Rollstuhl dient Schmerz und Erschöpfungsreduzierung, oft nutze ich den Rollator)mit zu einem Besichtigungstermin einer Wohnung mit nehme oder nicht. Als ich dann sagte, dass es mir schlecht geht mit meiner Gastritis, wurde gesagt "Ich streite nicht mit Ihnen, wir können den Besichtigungstermin auch einfach lassen".

-Zu oft das einbringen von pseudopsychologischem Wissen, was bei mir leider mehrmals zu Flashbacks und Zusammenbrüchen geführt hat, die nur mit Diazepam in den Griff zu bekommen waren.

-Allgemein eher dominantes Auftreten (fühle mich an meine Mutter erinnert)

Falls es wichtig wäre: Ich bin jetzt 40, diagnostiziert wurde ich erst sehr spät mit diversen chronischen Erkrankungen und einem Gendefekt. Ich habe einen GDB 90, mit B und G Märkchen und Pflegestufe 2. Mein Lebensweg war traumatisch, bis nun letztendlich zu der Schwerbehinderung.

Ich bin konfliktvermeidend und möchte eigentlich immer nur, dass alle zufrieden sind. Aber es setzt mir zu. Ich habe mittlerweile schon Ängste vor den nächsten Assistenzterminen. Auch habe ich Angst, dass ich irgendwie übertreibe und ihr damit Unrecht tue, nur weil sie halt so naturheilkundlich/spirituell unterwegs ist und ich eben nicht... Denkt ihr, was ich schreibe würde einen Wechsel rechtfertigen?

Würde mich freuen, Meinungen von anderen Menschen zu hören.

They took me to hospital. Waiting since 3 hours, but they gave me an infusion with pantoprazol and pain killers. Felt like I was dying. That's all.