Thursday, April 16, 2009

a second opinion on my mental health, and my grandparents' illnesses

I have a couple things on my mind. One is my appointment yesterday at the University of South Florida psychiatry clinic. The other is, three of my grandparents are doing really poorly and are very sick - two of whom are in a hospital right now.

So I'll start with the clinic visit. The resident I saw there I first met a month ago. You may recall my post about that. I went there, essentially for a second opinion on the medication regimen I am on, and my diagnosis. It has been very unclear whether or not I have Schizophrenia or a form of it that is also known as a separate illness, Schizoaffective Disorder. The resident I saw at USF sent me for bloodwork, and I got a lot of my records from my community mental health center doctor sent to her. So she reviewed that and then we met again yesterday. She believes I have "Schizoaffective Disorder, of the Bipolar Type", meaning that I have the symptoms of Schizophrenia as well as those of Bipolar Disorder. I don't get a lot of mania, but she seemed to think that periods listed in my medical records where I was not able to sleep well were periods of mania. I don't think she is correct about that, but I don't know for sure she is wrong either. I just know I never have periods where I experience manic energy and get a lot of things done, etc. I haven't had that experience since 2003, so I don't think of myself as having mood swings. I get depression, and I don't get manic. That is my experience.

Anyway, Dr. Peace Campbell did have some recommendations for me. She said I should see an endocrinologist because my blood work showed hypothyroidism, so evidently the amount of thyroid medication (Synthroid) I am taking is not high enough. Hypothyroidism is extremely important to deal with because it can contribute significantly to depression, low energy, feeling sluggish, and gaining weight, because it affects the body's metabolism. I already suspected I was still having a thyroid problem, so it was good to have it actually confirmed with bloodwork.

The bloodwork also showed high levels of Prolactin in my blood- a hormone which can become too high if you're taking antipsychotic medications (and also if you have a brain tumor on the pituitary gland). Also, my Triglycerides are too high, and that is bad news as I might need to go on yet another medication, for lowering cholesterol.

I spoke to Dr. Campbell about my weight gain and how desperate I am to find something to help me lose weight, or, at least to not gain any more weight. She mentioned the drug Metformin which is used in people with diabetes to help them lose weight. I had read sometime last year that this drug was being used in people who were taking antipsychotics for Schizophrenia, in some research trials, so that the researchers could see if the people lost weight on that drug. I had asked my community mental health doc then if she would look into this. I read it on Schizophrenia.com, back when that site was still being regularly updated. Since my doctor never heard of it and didn't want to try it at all, I am glad that the USF doctor now has mentioned that it actually might help me.

In addition, I mentioned to her how I seem to have fewer symptoms the week after I get the Risperdal injection, and then I have more symptoms the following week, as the injection wears off. She said that even though there have been no clinical trials to see if this works, sometimes doctors put patients on the injection every ten days or so instead of every two weeks, and they find that this works better. I am sure my conservative doctor won't do that, but Dr. Campbell suggested that it might be helpful.

Dr. Campbell is writing a letter to my doctor with her recommendations. I am really happy that I at least got some information from this consultation. Dr. Campbell recommended that I continue to go to the community mental health center, because I can have therapy (group therapy now), and my case manager there, whereas at USF they have no such services available. She also thought that, since Risperdal is helping me somewhat, I should continue to get the injections, and that, even though I'm on a complicated and rather strange list of medications, it looked in my records as though that was arrived at for specific reasons and it might not be helpful to see a new doctor. I still think I should go to a new doctor though, particularly to get help with the weight issue. I will set up an appointment with an Endocrinologist first, and see how that goes.

So that is my latest medical update on myself.

Most people who read this blog probably aren't aware of this, but back in 1998 and 1999, I lived with my grandparents (my father's parents), in Baltimore, Maryland. Right now both of those grandparents are in a hospital. My grandfather has dementia (or maybe Alzheimer's) pretty bad, and he recently went through two brain surgeries for blood on his brain. My grandmother fell again last night, and was hospitalized. She was told at the hospital that she has congestive heart failure. So things are not going well for either of them. I am worried about them, and I wish that I could fly up to Baltimore to see them. Unfortunately, I do not have the funds to do that, and I do not really have a place to stay there if I did go up, since I don't have much contact with my family members there, and haven't been invited to stay at any of their homes.

This entire situation makes me very sad. I am sad that my mental illness caused me to have to move out of my grandparents' home abruptly. I was delusional in 1999. It was the first time I was in that state. I thought my dad was going to murder me one day when he was there and I was alone in the house with him. He had held his fist up to my face as if to punch me, and I locked myself in a bedroom and dialed 911.

Nothing between myself and my family was the same after that. My dad did not speak to me again for six years. My grandparents kicked me out of their house, and I ended up living in a homeless shelter. I never heard from anyone on my dad's side of my family again until 2005. To this day, I don't have much contact with any of them, and I feel like a total outcast from my family. Nobody in my dad's family talks about health problems much, and they never talk about mental health. I don't think any of them would want to know about my illness, so I am afraid to even let them know about this blog, because I really do not want any of them reading it. This is a space where I feel safe and free to discuss my real life. I don't feel like that with my relatives.

I took a brief trip to Baltimore a year ago, and I stayed in my grandparents' house that I once lived in. They were not in good shape, and I tried to make them understand I was sorry about those past issues and that it was all water under the bridge. I think that my grandfather probably didn't remember it all anyway, and my grandmother didn't seem to care anymore about that history. We didn't discuss it, since we didn't discuss anything. We watched TV together and played Scrabble and ate dinner. After that I had to go home.

I don't know today if my grandmother knows how sorry I am that I brought the police to her house when her oldest son was a high-ranking member of the police department. I still feel badly about it, and I hope she doesn't remember that nonsense now. I have apologized for it in writing, and there is not much more that I can do beyond that. In my family, people don't talk about problems much. My grandmother has never been able to talk on the phone in my lifetime because of her hearing problems, so there aren't many ways to converse with her, other than visiting her in person. Maybe I will have an opportunity to do that in the future. I hope so. I am glad that I got to see her and my grandfather a year ago, before things got so bad for them.

If you could keep my grandparents in your thoughts, I would appreciate it. Thank you.

1 comment:

Aral said...

I think that your case is very complicated and you need a real doctor, not a nurse practitioner or a resident. Doctors with between ten to twenty years of experience are better, with less than ten years they would be inexperienced and with more than twenty years they are not up to date.
I have always had good doctors, not nurse practitioners. The only time that I faced the problem of seeing a nurse practitioner instead of a doctor, was when I had transferred from my previous mental health center to my current one. After admitting me they assigned a nurse practitioner for me. I did not accept it and did not see the nurse practitioner even once. I called all other mental health centers in the city that I live . There were about eight or nine ones in this city and one or two of them told me that they can admit me and assign a psychiatrist for me. But the same mental health center that had not assigned a psychiatrist for me in the beginning, assigned a good psychiatrist for me. I do not know why they changed their minds, but now I see my psychiatrist has always enough free time and he does not seem to be very busy. I think they might even have had a legal obligation after admitting me. A psychiatrist is much different than a nurse practitioner. A psychiatrist has spent at least ten years in a very tough program in the university, a nurse practitioner has been in the university for four years in a much easier program. Seeing a psychiatrist is worth driving a few more miles from home.
Also in the city that I live there is a big university. I talked to them and they told me that they would assign a resident for me, so I did not continue with them.
I am sorry about your grandparents. My grandma passed away last summer from dementia and Parkinson. Dementia is a nasty disease.

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