Is it possible for her father to put her on his plan? I have Empire also and while the policy may be different, it has been good.
I read that you are in NY. If youāre in Orange County NY, which is where I am, there are resources and being close to Manhattan and research hospitals that will give free treatmentā¦Columbia Presbyterian.
Thank you so much. Your thoughts are appreciated.They dont seem to have too may support groups like I thought. One group, that seems to be for families doesnāt start until March sometime, which is now right around the corner but Ive been looking since October.
I am actually in Dutchess county. There are free services @ Columbia Presbyterian? What do they offer? My daughter just turned 18 and still has her senior year to finish. She was an A student up until all this. She has not been in school since October. She finally went back a about 2 weeks ago, but to to snow and regents, has not been there a full weeek yet, and has now been placed back in the hospital.
How was your school with school/college?
Risperidone was awful for me. I gained 30 pounds despite throwing up constantly. Geodon or ziprasidone was much better for me, starting at a low dose of 40mg at bedtime, then slowly raising it to 60mg twice a day. But you have to eat it with a full meal, or else it will just get you really high and run through your system without helping.
That is another useful side effect of Geodon. It completely wiped out my appetite so I was able to lose all my risperidone weight in a couple weeks. The downside is sometimes forgetting to eat, so I have to wear a watch with a timer that goes off when I should eat.
You need to go to the social security office and apply for disability and Medicaid. It takes time so donāt give up keep trying, itās so important to have this. You will get a lot of help with this. This is a life illness with no current cure. You need to think about healthy living, a better life for you and your son. Proper medication is very important, vitamins, therapy, support groups, reading books on Sz, watching movies on sz, take walks get help from NAMI.org they are everywhere. Eat healthy, sleep is important. People with sz need family support, caregivers that take care of people with sz need therapy, music, art, gardening and lots of help from your city and county. Do a little research on help for caregivers. Take breaks, have a daily planner for meals, household management, chores, for everyone. A weekly management planner does help where everyone is a part of helping. Brain games, music therapy, pet therapy, having a journal. Everyone should be a part of this.
For your daughter. You need a lot of help for her to get her to recovery
Alexis:
Iām new to this forum but I have found help through NAMI and wonder if you have taken the Family-to-Family classes NAMI offers to Family members?
Hi, Iām sad to hear your daughter has all of that. I was diagnosed psychotic NOS, PTSD, and depression, and it has never gotten any easier with my family. Try to see things how your daughter might see them, it causes understanding between you. I know it is frustrating, but keep holding on, youāre doing great. Try getting Medicaid or insurance like that for your dauhgter. They will pay the entirety of her medical bills for you.
Thank you. Everyone keeps telling me about NAMI. I think they have session staring in March in our area. I hear it will be very helpful.
She finally got approved for Medicaid on Friday, Thank God. It was a huge weight off my shoulders. The next trip is to social security to try for SSD. Hopefully that wil offset some of her personal bills, as she is on FMLA from her job for the time being. She has so much going on between therapy, regulating her meds, making up 3 months of school work, and her current school work, and now her regular doctor told her she is pre-diabetic because she has gained over 40 lbs since her last years physical. due to the meds, and not being very active I am assuming. Its hard to motivate when the drugs make you so tired, all you want to do is sleep.
I wouldnāt worry about āliving off the governmentā. Your doctor is right. This could be the beginning of a long road ahead. You are going to need every resource available.
that is good. well, not good being pre-diabeticā¦but its good she has medicaid.
There are other topics here on having a second med to help with the weight, itās suppose to help possibly with reducing and maintaining healthy weight. Ask her doctor.
Being over weight with sz is very hard and makes life difficult
Hi Alexis: I feel for you going through all of this. It is extremely draining on a family when our kids become ill. I know you are going through story after story to this one and that one and it feels as though no one communicates with anyone else, the same experiences that you are going through with your loved one has to be repeated over and over to the point where as you say, you feel that no one hears you. It is indeed exhausting and painful. You want to wake up in a normal environment and not deal with this. It is new and it is very frightening to deal with. All I can say is to look at it as though it was any other illness that has arisen . It is difficult to deal with because it has to do with the mind. It is a roller coaster for sure, but try to believe in the professionals. It took a long time to diagnose our so and his doctors kept changing constantly, he was sick of telling āhis storyā and so were my husband and I. However, it is important that you learn all that you can about your daughterās illness and continue to be her advocate, no matter how tiring it becomes. Try not to fight the results and take care of yourself, you deserve it.
Is there something that you like to do that you have not had time for? Bring it back into your life and take care of you first. It will get better. Our son is a happy person with a mental illness. We continue to love him - the illness, not so much. Through my parental support group, I met up with a family who had a son who was the same age as ours. We had dinner at their house and brought our son who did absolutely not want to come but he did. The result is that they have been friends for over five years now, both have schizo affective disorder. They lost all of their past friends but seem to find comfort in each other. At these support meetings, I could fall apart and share my grief with others in the same boat, it really did help. I also started painting again after stopping for a year and a half. I hope you get the help you need for her and yourself. Our son writes a lot of music, calls his friend daily and sees his brother whenever he can. he will live with us until we breathe our last breath, but he is okay now. Take care.
arisen. It is because it has to do with the mind that it is
Hi Summer.
It seems like things are getting a lot better with her new meds. I try not to get too excited because you never know how long it will last. Itās been 4 months since her last hospital stay, so I sm hopefull. The new issue is now her weight. She had gained close to 50 lbs and is now pre diabetic. Although it should be as easy as going to the gym and watching what you eat, itās hard dealing with an 18 yr old on meds, who is sometimes just too tired. I donāt buy junk in the house, but where there is a will there is a way. She does want to lose the weight but often becomes frustrated when immediate results are not seen. Weight was never an issue for her. She had been doing cheerleading since she was 7, among other sports. Now sheās finishing her senior year, there is really no school sports left. She pretty much missed 1/2 of her senior year from being in and out of the hospital, she feels so out of touch with things. This is not how I pictured her senior year to be. Iām glad your son has a friend he can relate to. My daughter met a few on her trips to the hospitals, but none that she really stayed in contact with.
after my son was diagnosed we got social security (i filed for it online it took weeks to hear back but finally got approved and it was pretty easy actually) . Medicaid pays his medical and RX (he once was on depakote shot which was NOT covered OF COURSE by my insurance that I pay $400 a month for) so I was in a panic to get him approved for medicaid the day before they wanted to give him the shot. after a couple days of crying and begging on the phone he got approved for an emergency situation. (I almost collapsed when they told me he was approved for it, I was that mentally exhausted from crying and begging plus handling him in the hospital) . Heres what I have for him and heās 22. btw: He was also very bright finished high school in 2 years had a full grant to Ohio State for Physics engineering etc. I had to take 2 months off work FMLA to even keep myself together . its hard to have a kid that seems like they have it all made and then suddenly its like you are starting from the beginning with another child and still mourning where the child you raised went. No one is ever āpreparedā for mental illness.
He has a free government phone (just looked it up on the internet one day !)
He has Soc Security - when he did work I had to report what he earned. without working at all he gets about $620 a month which I handle -otherwise he would spend it in 20 minutes on hats that rappers sellā¦
Lives in an Assisted Living apartment.- I LOVE it. he has his own apartment that is inside a building , its like a hotel for old people but he got in because he has a disability. there are emergency pull strings in case he needs help.
Its very safe and quiet. I dont have to worry about someone breaking in if he leaves the door unlocked etc. Its just down the road from a grocery store which is handy. His rent and utilities are $203 a month. So I dont have to worry about utilities being paid each month.
Medicaidā¦ its a godsend. He always thinks something is wrong with him from high cholesterol to sprained ankles. We drowned in hospital bills until we maxed out in 5 months.
Your story sounds just like ours. We are currently waiting in SSI. They told us when we applied it would take at least 5 months to hear anything. We FINALLY got Medicaid. That alleviates the prescription issue, as her new prescription was going to cost us $100 per month with our insurance and that was only 1 script, she has 3. Do you have an issue with obtaining his prescriptions through Medicaid? Every month we seem to have an issue because it needs to be preauthorized each month. Last month we had to pay $890 for a month supply because it was a Friday, the doc office closed at 5, and there was no preauthorize done. She took her last pills on Thursday, and I needed this for that night and weekend. Luckily I had 10 days with Riteaid, to get the preauthorize all set, and they reimbursed me. But literally was the last second to get it done. Sometime I just canāt stay on top of her and her care because I have a sick 6 yr old with heart issues. Currently Iām in the childrenās hospital with him now. Iām just afraid weāre going to miss an appointment or paperwork that needs to be sent in that may be time sensitive and Iām going to miss it. My daughters 18, and not very reliable.
Her case manager I havenāt heard from in well over a month. Iām just so frustrated with this system for the mentally ill, it drives me crazy.
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