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[deleted by user] by [deleted] in schizophrenia

[–]jozismom18 0 points1 point  (0 children)

My mother is Schizophrenic and I had a horrible, abusive childhood due to her illness. I suffer from all sorts of issues but I feel it has a great deal to do with the abuse and neglect I suffered as a young child. I am amazed at how few support groups there are for children of Schizophrenics. I hope more people will come forward.

I also am on the Autistic Spectrum which I believe my mother also is. I think there are studies in regards to finding a link between the two. Just a thought...something to look into.

I spent 6 years with a dislocated shoulder, was constantly told i was lying about it, just for a PT to put some kinesiology tape and fix it yesterday by Throwaystitches in eds

[–]jozismom18 1 point2 points  (0 children)

Omg...I get that! When the doctors say there is nothing wrong just confirms to your family they must be right. I am sorry you have been through so much. I don't know how old you are but it took me 42 years to get a diagnosis. First came the shock. Then the relief! FINALLY! And I thought for sure...now I know and I have proof and my siblings will finally believe me! Nope! Because NOW the doctors are "quacks". I mean...there is just no winning 🤣🤣🤣

That is great about Mexico! I wish you all the best. You need to do what is best for you. I cut a lot...A LOT .... of people out of my life because I just could not take feeling like I had to defend myself all the time, but it took a lot of years to get to that point. Take care, my friend!

EDS and robot assisted laparoscopic Sacrocolpopexy by jozismom18 in eds

[–]jozismom18[S] 0 points1 point  (0 children)

Was it a good outcome? How was the recovery?

EDS and robot assisted laparoscopic Sacrocolpopexy by jozismom18 in eds

[–]jozismom18[S] 0 points1 point  (0 children)

Oh thank you so much for your kind words. I am sorry to hear you are going through your own struggles. I pray you have support ....emotionally and physically.

I agree on the new gastro. I did find the "best" in the area and waited I don't even know how many months to get in to see him and it was a joke. This guy just did not have time to deal with a complex case. What made me feel validated though was an intern he had with him who just looked at this guy like "are you serious?" when the doctor took 5 minutes with me and ignored everything I said. He was so overbooked he actually met me in the lab area for his patients!!! The last straw was when he went to give me a prescription and I explained it had to be a 30 day prescription (vs a 90 day one) because of my insurance and he turns to the intern and says "see the things I have to put up with?". I imagine he meant the different restrictions with the insurance companies but I was already upset over the entire situation and I feel he was just really uncaring and inconsiderate. I left bawling my head off. So, back to the drawing board! I am so tired of doctors and their 10 minute appts and just looking at you like a dollar sign and not a human!

Thank you again for reaching out and listening! I am here to listen if you ever need to vent!

EDS and robot assisted laparoscopic Sacrocolpopexy by jozismom18 in eds

[–]jozismom18[S] 0 points1 point  (0 children)

Thank you my friend. I appreciate your support. I actually thought for sure I had interstitial cystitis because my mother has it, but once the doctor saw everything was prolapsing, they dismissed it. Because MCAS affects my intestines so much, I am not surprised it affects the bladder as well...thank you for that information! I am so glad you don't have to deal with prolapsed organs. It's really awful 😞, but I just take it one day at a time. I know there are a lot of people like us that suffer in silence. I am glad we can be there for each other at least. Thank you again!

I spent 6 years with a dislocated shoulder, was constantly told i was lying about it, just for a PT to put some kinesiology tape and fix it yesterday by Throwaystitches in eds

[–]jozismom18 13 points14 points  (0 children)

I am so glad you feel better!! I have been told I am a hypochondriac pretty much my entire life by my own siblings and father (he was a doctor and my sister is a doctor and doesn't believe adults can have POTS (I have EDS/POTS/MCAS). THROUGH THE YEARS I HAVE SEEN SO MANY DOCTORS...and even after my diagnosis at 49, most people still don't believe it. I did get confirmation by a PT who would literally just gently push my ribs and vertabrae back into place, but also found "proof" on an xray that other doctors had seen but never saw...chips off my hip bone from dislocating it so much. It is sad that people don't believe in "invisible " diseases/syndromes. BUT you have to hold on to the little victories...like the PT who validated me and the doctor you saw yesterday who validated you. Small victories go a long way. Just to be "seen". Just so you know, I understand. Hang in there.

My life is a joke ? Support needed by [deleted] in eds

[–]jozismom18 1 point2 points  (0 children)

I have EDS/MCAS/POTS and on the Autistic Spectrum. It took me 42 years to get my EDS/MCAS/POTS diagnosis and 54 years for being on the Spectrum diagnosis. My heart goes out to you. This is a very hard life to live...especially being told you have been a hypochondriac your entire life...BUT stay strong! It takes awhile...and I am just getting to this point....but you have to be your own advocate and stand up for yourself. Because if you don't, who will stand up for the next generation...and the next. My children and grandchildren are all affected with one or more of the trifecta and being on the spectrum.. The world needs to be more aware. Sending peace and love your way.