I'm so sorry for all the questions but I'm really struggling to figure things out right now. This will be a long post and I'm sorry. Hopefully a few of you will be able to get this the reading and provide thoughts and suggestions.

I think a little history, while seemingly unrelated is important so I appologize again for the length of this post. When my son was 2 weeks old he developed blisters in his pelvic area. When I brought him to the doctor the doctor said he thought it was herpes. Freaked me the heck out, making me think I had it and was the cause of my son having it. Turned out to be Staph and the local news broke a story about Staph outbreaks at the hospital my son was born in. Why would the doctor say such a thing with no evidence? At age six my son began bleeding from the rectum and it looked like he was menstrating in the toilet. His pediatrician said it was constipation which he confirmed using an X-ray. He prescribed Miralax daily. My son continued bleeding and became very sick. The doctor kept saying constipation ....by age 9 my son couldn't move without nearly passing out and was bleeding cups of blood every hour. His pediatrician wasn't in so we got an appointment with another doctor who looked at the X-ray....said no constipation was present in the X-ray my son's doctor claimed it was. She referred him to a specialist and he was soon hospitalized for over a month because of Crohn's disease. He needed emergency transfusions because he didn't have enough blood to support organ function and life. This was a scary misdiagnosis. He was on several medications to control it. I looked them up and found that the combo of 2 drugs he was on had studies indicating it increased risk of lymphoma. I talked to his doctor who shrugged it off. I worried but felt she must know what she was doing. She called me a few days later, told me she researched the studies, felt my concerns were valid and changed his treatment course. I could go on and on about the misdiagnosis of my family....my mom had colon cancer and they told her it was just stress. Her colon had a tumor wrapped around it which kept stool from even passing, she became toxic, nearly died but they then found the cancer and she is well. Thank goodness. My mom later developed severe panic attacks and the doctors said "stress". My mom called me one night and said "I'm afraid that when I wake up, I don't know who I will be". She went to the doctor and they found that her cholesterol was over 1200.....a stroke waiting to happen and had been like this for years without them telling her. They found the cause which is Graves' disease/thyroid issues and killed her thyroid which improved all symptoms.

Several years ago I started the mental health med go round. I kept having horrible side effects and my doctor said "you react to everything, there is nothing I can give you. Stop looking up side effects". I got a new doctor who said there were many other options of meds to try but told me not to research side effects. I can't complied and thought he might be right but I'd experience side effects THEN check and see and sure enough it was related to the med. I'm already sick and wanting these meds to help with that but instead it's like pouring salt into an open wound. If the meds helped, I'd accept the risk but they do not and make me less functional.

Recently I told my doctor I wanted to treat symptoms as they come and wean off when not needed because the side effects were killing me. He was obviously very pissed at me and demanded basically I stay on meds full time. I was basically strong armed psychologically into trying yet another med. Saphris. I haven't researched the side effect profile and will take and see what happens. But I'm uncomfortable with the demands that I not look up side effects. Some are very serious and I think I should know in advance if I should be looking out for something. What if these meds cause something permanent? Will my doctor who is bullying me into taking them pay the price? NO! When I discuss my concerns which my doctor over long term use and wanting to take only as needed he was noticably angry and annoyed. He told me I'm over inflating the significance of the side effects. My research indicates otherwise.

The doctors have been WRONG on so many things over the years. A lot of guess work is used. I have a right to be skeptical....I know my body and I'm the one who must live with the consequences of anything that happens. I want a say in my care and to get heard. I don't feel I have a med phobia for no reason and the doctors actions over the years have given me good reason to be on alert.

Maybe I just want to be heard on this....but I wold also appreciate advise of experience.

[Moose72]

My cholesterol is 700 from zyprexa so that stood out in your post to me. I hope Rexulti doesn't continue this trend.

[BeyondtheRainbow]

Up until a few years ago I knew everything about every med I took and I wouldn't take meds until I knew about it. Since I worked in healthcare I had a lot of exposure to meds anyway (and I worked in psych for years which gave me even more exposure to things I'd eventually take....this was bad sometimes because of things like the pdoc where I worked used Seroquel to snow everyone. Consequently I refused to take Seroquel when in reality it worked quite well for me without being even close to the most sedating med I've taken. I may have lost years of working to that.). But knowing was important.

Then in 2011 I became very suicidal and my pdoc and therapist were very concerned because I knew what was now too much to be safe. So from then on I've been asked to not read drug profiles. By now I'm ok to do so but am not allowed to read the parts about overdoses and never will be. But mostly since that time (and now during bad times) the plan is that my pdoc promises to tell me everything I need to know and answer my questions and my therapist will look up and answer questions as well without sharing the entire profile with me. So I had to give up a little control but I still have access to the most important stuff, which lets me find out "did my kidney stones happen because of clozaril?" etc.

could your husband or pdoc be your "information keeper" and answer your questions but not give you a (ok, fine, I'll type what first came to mind because it's kind of funny and Freudian) an overdose of information?

PS I'm so sorry you and your son went through so much.

Originally Posted by Moose72

My cholesterol is 700 from zyprexa so that stood out in your post to me. I hope Rexulti doesn't continue this trend.

I sure hope you can get that straightened out! ((Hugs))

Originally Posted by BeyondtheRainbow

Up until a few years ago I knew everything about every med I took and I wouldn't take meds until I knew about it. Since I worked in healthcare I had a lot of exposure to meds anyway (and I worked in psych for years which gave me even more exposure to things I'd eventually take....this was bad sometimes because of things like the pdoc where I worked used Seroquel to snow everyone. Consequently I refused to take Seroquel when in reality it worked quite well for me without being even close to the most sedating med I've taken. I may have lost years of working to that.). But knowing was important.

Then in 2011 I became very suicidal and my pdoc and therapist were very concerned because I knew what was now too much to be safe. So from then on I've been asked to not read drug profiles. By now I'm ok to do so but am not allowed to read the parts about overdoses and never will be. But mostly since that time (and now during bad times) the plan is that my pdoc promises to tell me everything I need to know and answer my questions and my therapist will look up and answer questions as well without sharing the entire profile with me. So I had to give up a little control but I still have access to the most important stuff, which lets me find out "did my kidney stones happen because of clozaril?" etc.

could your husband or pdoc be your "information keeper" and answer your questions but not give you a (ok, fine, I'll type what first came to mind because it's kind of funny and Freudian) an overdose of information?

PS I'm so sorry you and your son went through so much.

This was very helpful, thank you.

After my son was well enough to be released from the hospital that first time , I went back to work. My son required constant blood checks because the meds he's on can be so dangerous. The hospital called me at work, told me my son's white cell count was through the roof and this indicated CANCER and to rush him to the ER . My legs were buckling and the ladies at work insisted I not drive do they drove me to my moms house and she drove. When we got there they apologized and said the increased white cell count was just from the meds and expressed regret for using the word cancer. I could go on and on. I know that everyone makes mistakes but these are pretty big whoppers. I guess the real problem is I have zero trust in my medical professionals most of the time.

My son is now on a medication called a remicade which increases chances of lymphoma.......we had no other option. I had to make the decision for him to use it and it killed me. It's working very well thank goodness. I feel responsible for my son being sick. I worry the drugs they are giving him will kill him and it will be all my fault. I guess I have to admit I have a med phobia and work on that. Perhaps that is what I need to work on in therapy as well as my mistrust of medical professionals.

When my son became sick I developed a death phobia and became certain my entire family was going to die. I can't shake it and I feel like I'm somehow responsible for it.

You mentioned the lost years of employment because of your med fears. I have so much guilt about not working and guilt over not taking meds which might help because there are a few I won't try. But I can't help it. But the guilt of not being able to work and contribute to society is killing me in its own way. I think it's led or at least contributed to a few episodes of psychosis even. But I'm so physically sick and the meds just seem to make that worse. I go to bed every night with sincere hope that I will wake up the next day cured and it never happens. I just hope I can get past this phobia and a med does exsist that will help me.

Thanks for letting me vent.