Jays Back Slide with Medications

You may not have noted that Jay will not be hosting this blog with me after all. He is doing his own blog instead. When I get his URL, I will post it in the blog lists. So I will write what I have seen happen with him instead.

I had last given my testimony to what happens when you go off your medications. I will share Jay's side now. It is a mistake to go off of medications without the aid of a doctor without a doubt. Jay had decided to take a leap of faith and go off of his pills. He felt he was ready for it, and in complete control. Big mistake!!!

At first all seemed well when he stopped his medications. He hadn't told us he was doing it. I finally realized and approached him about it and asked him if he was taking his medication. He finally fessed up to it. I asked him to please get back with his doc, but he refused. He was unable to see the changes in himself. I tried reasoning with him, but by that point it was too late.

Eventually he became moody. His mood strings were like being on a roller coaster. He was indecisive often. One minute he would seem happy, the next just blatantly mean and cranky. No patience what so ever. It's hard to live with someone like that, but when you've lived with the ups and downs, and you love your children, you learn to deal with it. We did get in a few squabbles though.

This went on for a while until finally he agreed to go talk to his doctor. By this point he had become so paranoid. He was going to hang foil over his windows, do something to his door, and make himself a foil hat to block out all the enemies. He was terrified. He didn't even trust us any more. When he sat and told us later on what he had been going through, we were shocked.

So as you can see. From both of us, we've experienced what it is like to go off your medication cold turkey and not be under the care of psychiatric doctors. If you feel you can make it without taking medications anymore, Please, Please, Please, reconsider this step. Talk to a physician first. It could mean your life. A person can suffer a heart attack when going it alone. You can anyhow, but at least you are under the care of a physician.

Jay knows what it is like to go off of them, on them, off again, back again. It totally messes up your systems. Each time the effects worsen. Your disorder worsens each time as well. Suicide is high here on the list as well. Jay had made that attempt once a few years back when he went off his meds on his own. It's frightening for them, and ever more so for us who are watching. Hopefully Jay will write more on this subject on his blog, as it is a very important message to hear.
Thanks to all of you. Much love and blessings sent your way.

Lesson Learned

Well, we learned a very important lesson today. When you see a loved one slipping, or having a bit of a set back let them know that you see it. Jay had a bit of a slip, but it was fairly minor thank heavens. He will right all about it I'm sure. Thankfully he was able to get in and see his doctor today. He seems to be getting back on track already. Yeah!!!
We also decided--his idea!--to keep a journal of how he is each day--each one of us will do this--to see if we can connect anything to what may be setting him off. So as you can see, as long as you stay on top of things, you can go on with a fairly normal life.

Aspergers Syndrome

We recently found out that our future step grandson has apergers syndrome. I had never heard of it until now, but do know about autism and ADHD (attention deficit hyperactive disorder) which is a combined disoder that makes up aspergers.
I've always known there was something wrong, and finally his birth mom took him in and had him checked out. I'm glad he is finally getting some help.
As stated, this is all new to us. So if there is anyone out there that can give us some tips on how to work with him and help him, it would be greatly appreciated. I've started researching and found some great information from it. I'm going to add a link to the side bar where I have gotten my information from so far. Anyone knowing of other good reading material on this disorder, we sure would appreciate you sharing it with everyone. Thank you!

Comments Section Changed

I apologize if anyone has tried to comment. I hadn't paid close attention to the selections. It has been fixed so that comments can be received with word verification. Comments are very welcome, just keep them appropriate and nice. Thank you.

Delima of Ending Medications

I'm going to give you two accounts as to what can happen when you go off medications for mental illnesses. This post will deal with my account. The following post will deal with what happened with Jay (not his real name for obvious reasons).



Not all that long ago, I had decided to talk to my doctor about going off the paxil which I had been on for a few years. I felt like I had control and would be able to handle it. I was gaining so much weight which is one of the side effects of paxil. I would get shaky, break out in a sweat, and eventaully get to the point where I couldn't function from being so hungry and then gorge myself. I hated it!



I talked with my doctor and she agreed to give it a try. We had a back up plan if it failed. I was going to go on a more natural medication called cymbalta if I had any problems. I was to contact her immediately if I was experiencing any problems, as when one comes down off their medications it can have drastic effects. You have to be weened from the medications. Just stopping them can kill you. My sister almost lost her life. She felt like she was having a heartattack and rushed to the hospital. You simply can not just stop it.



So she slowly brought me down from the paxil. I felt funny in the begining which is normal. I had feelings of diziness often. I tried real hard to ignore that feeling. At first all seemed great. I felt like I was on top of the world. I felt like it was going to be okay. I took a leap of faith, believing that God would take it away.

See, where I went wrong is I did not pray about it. I did not ask for help with it. My family saw me changing, but I did not. Then I began to realize something wasn't right. I was no longer able to pray, I couldn't read the Bible. This was all literally taking place. I began to panick. One day I just cried and cried, and didn't want to be around anyone. I felt alone, I wanted to isolate myself from the world. I became angry with my husband. He was flustered. It was cold that particular morning. I thought to myself, the enemy has control of me. If I'm consumed with the devil, then please Lord take me now. Get rid of Satan and take me now.

I grabbed my I-pod and ran out the door. I thought, I have one shot left at Salvation. I walked and walked, getting colder and colder, having a hard time breathing, my lungs gasping for air. I didn't care. I wanted to hear God speak to me and if He didn't then I wanted to die. I had no coat on. It was dark, and I was alone, unable to hear His voice. My life was over. I didn't want to go on any more.

I made it back home, sat in a dark room and cried and cried, thinking of what would the grandkids think, what about our kids, my sisters, parents, husband? How could I leave them like this? But then how could I put them through living with a devil woman? My head was spinning. I couldn't stop crying. I felt like life was totally out of control.

I heard my husband come down stairs and thought, please don't find me. Leave me alone. I can't see you right now. He came in and asked me what was going on. All I could say was, "I don't know. I'm scared." He then placed his hand on my shoulder and started praying out loud. I cried even harder. Then low and behold, I saw this big hand reach down and saw myself literally being pulled out of this deep dark mirey cess pool. He hadn't left me!!!

I reached up and he said, "Child, I never left you. You never came to me. You never asked me what you should do. I placed doctors there for you all for a reason. You must see your doctor and get back on medication. It's okay to accept help. There is a reaon for everything. Now go child, and always remember to come to me first. Don't try to do it on your own. I love you."

I can not begin to explain the feeling that gave me. It was beautiful. There was hope. I made the appointment and my husband went with me. Thank heavens. I had a hard time telling my doctor, as I had become so emotional. My husband, bless his heart stood by me every moment of the way. He never gave up on me. Had this happened before we came to the Lord, we probably would not be together, and I perhaps would not be alive. I'm now on Cymbalta, which I had requested. I absolutely love it.

I've learned to never go it alone. Never just go off the meds on your own (I had tried that before as well), and to be very cautious. When you go off the meds and back on and off and on, you continue to make the sypmtoms worse. We learned this with our son. It's not worth it.

I had said at the begining I would write about two situations. This turned out to be longer than I thought it would, so I'm going to make them two seperated posts. In fact, I'm going to try and get my son to talk about his experience verses coming from myself. He has so much to offer for you all.
There is so much to share and tell right now, that my head is spinning. So I must take a break and think this through. I really want to start at the begining and walk you all through the experieinces we have had with our son and what to look for. The signs that can be confusing are all so important. They are NOT TO BE IGNORED!!! Trust me. So many want to think it's too embarrassing, or awww, it's just all in their mind, or they are just bad kids, and on and on the excuses go. It can cost you the loss of a child. A child that can go on and live in society with no threat to society.

Stigma and Society: A Mother's Plea

I was talking with my son last night and told him about the start of this blog. I took him to the link from Amber and asked him if he would be willing to listen to the part of the voices. He agreed as he wanted to see if what he experiences is like others. We didn't get far into when he said to turn it off. I have to admit, I was worried about it bothering him and perhaps being too much. I wanted to know if it was what he goes through.

As we talked, I learned more about what it's like for him. The voices were like what he hears. What an eye opener that was. The only difference was he wasn't able to hear what they were actually saying, it was muffled, which is a blessing.

Despite the fact that he is on medication that is working wonders finally--it's taken years to find the right "cocktail" (that's how it's described for the mixture), that he needed to get him on track--he still on occasion hears the voices again. They aren't as bad as they had been, but when he experiences this, it wears him out and the next day he has a real hard time staying awake, feels drained, and has a hard time focusing and functioning.

For those of us that don't experience this type of thing can be thankful that we don't have to live like this. It's very real. They aren't making this stuff up. It's a real life experience that they live with on a daily basis.

I have had people tell me that it's all made up, they make themselves think these things, that they use it as an excuse to get out of having to work and live the easy life, what they need is a swift kick in the pants to get off their lazy butts. It burns me to hear these things, as they have no clue. They only hurt those suffering from the diseases more by talking like this way.

I can tell you that it drives Jay nuts. He wants to live a normal life. He wants to be able to hold down a job, but his phsychosis creates a fear of people for him. He is improving bit by bit, but can not handle being around a crowd of people. On occasion he is able to cope, but far and few between times. He wants to work like everyone else. He hates getting assistance, as he feels he doesn't deserve it. He's struggling and trying hard to get somewhere in life.

This is a true and real delima that schizophrenics deal with. They can be really hard on themselves thinking "they" should be able to control it. Often times they will go off their medications thinking they don't need it anymore, or they should be able to make it go away on their own. Not the case. We as parents living with him can testify to the fact that by going off the medications only makes things worse. I'll do another post on what happens when doing so.

I just ask that society starts to open their eyes to mental illness. Realize the delimas they go through. Realize that it's very real. Realize that it is hard on the individuals to go through life feeling like failures, feeling worthless, feeling like a burden. I'm just thankful we were able to get ourselves to get information concerning what was happening with him. To realize that it is a disease that occurs in the brain ceptors that we can not control.

We must stop throwing stones at these people, as we only make matters worse for them. We cause them to withdraw into themselves even more. If we want them to become beneficial members of society, then we need to except them for who they are and work with them. Pushing them away isn't the answer. So please, I beg you as a parent of someone who watches what happens to a loving person keep tucked away because of the stigma society places on those with mental illnesses, stop the stigma, be kind, and accept them with open arms. They need us!

Please go to the link I have posted on the prior message. When you go to the site with the pictures with audio, click on the second link, it explains a few things and then plays the voices that they hear. You will be shocked. It's not an easy thing to listen to. Thank You.

More About This Blog

Although my son and I deal with schizophrenia (him) and bi-polar (me), I am open to information and discussions on any mental disorder, as I want to learn about each one. Feel free to bring any type to the table. It’s all about helping one another through something that isn’t so fun until you learn more about them and how to live comfortably with them. Any one with information (accurate) they want to share, please do. Let’s spread the wealth of information, support, and love to one another.

More Help

I’ve recently met a woman with a great site that has pictures with audio on schizophrenia that is very beneficial to those that haven’t a clue as to what they go through, or are trying to learn about it. It helps one understand the problems they face and live with.

She also has a blog that talks about various items on the subject. There is also an article to read.

The following are the links to visit. They are well worth checking out. The first one is the pictures/audio; the second one is her blog; and of course the third one is the article. Hope this helps.

http://www.gaining-insight.com/ http://gaining-insight.blogspot.com/ http://timesunion.com/AspStories/story.asp?storyID=750776&category=LIFE&BCCode=LIFE&newsdate=12/17/2008

Brief History

I'm going to start this blog with a brief history of what has happened so far.
Our son was born a happy child with no problems. He was the promise of a bright and cheerful future. Until one day the life of a happy child changed. Gone was the constant smiles, the upbeat happy little boy we once new.

The boy before us changed. He became irritable, agitated at the world, and at times hard to control. Our first thoughts were he's just going through a phase. Then came the question as to what we had done wrong. We became frustrated ourselves as teachers were complaining about his behavior, his disconnection to school, his lacking in participation. But they all had one thing to say, "He's a bright young man with great potential, he just won't apply himself."

Unfortunately at the time, we were stationed in Germany. No one had any ideas for us. He was labled a bad child at school. We were labled as bad parents who didn't know how to control and discipline our child. The longer this went on, the more frustrated we became. The more frustrated we were, the worse the sitution became.

Finally we headed back to the states. He seemed to have improved some, but not enough. This continued on up until 7th grade. He started getting into trouble at school. 9th grade he ended up having to do community service when he was caught smoking. He dropped out of school in the middle of 10th grade. We finally talked him into going back. The school prinicpal was awesome and willing to work with him. But this did not last long. He had two strikes against him. The third dropout he would not be allowed to try again.

He then tried the alternative school. This started out really good, but did't last long. At one point between the 1st dropout and going to the alternative school, he came to me and said he needed help and no longer wanted to live. I had a feeling it was a mental disorder a while before this came about, but his dad was in denial and said no way would he put him through that.

I took him to see our family physician who was wonderful, contacted Intermountain Hospital and asked to have him seen there. Our son was committed to there for a week while they checked him and diagnosed him as being in the middle stages of bipolar. He seemed so much better by then. The down fall was he was always groggy from the medication. When his dad saw the change in him he was so happy that we had gotten him help. He seemed to be normal again!

Let me tell you, if you aren't watchful and real careful, chances are, they are going to end up right where they were. He did not stay on his meds. His friends talked him into not taking them. He would lie to us by saying he was taking them, but I knew better. We ended up back at square one. Eventually he became suicidal again, and back to Intermountain we went. By this time he had become Bipolor with schizo effective tendencies. Oh, and before this trip to Intermountain, he tried H.S. one last time. This did not last long at all. Before we knew it, he had dropped out again.

By this time he decided he wanted to move out. He had a job with a car dealership, detailing vehicles. Eventually he quit going to work, hooked up with a gal who was pregnant. He was drinking and doing other illegal things at this point. We didn't know what to do, as he was now an adult. Our hands were tied. We tried talking to him, but to no avail. He would act like he was listening and cared and then do just the opposite.

One night the tough love came into play. He had been partying with friends at an apartment our daughter & I had gotten--my husband and I were separating--and ended up out of control. Apparently something was slipped into his beer. Of course with a bi-polar combo, this can create a volatile situation. He started busting up the place. I was called and rushed out there. I tried to calm him down, but to no avail. The police showed up and I had to have him taken into custody. That was the hardest thing I've ever had to do.

This was his wake up call. He started getting his life under control. Joined a group therapy through Intermountain that was to help him find some self respect and stop all the garbage he had been doing. Wow! What a change, there was hope for the future after all!

Soon our bubble was busted, he became suicidal again. This time I took him to St. Al's hospital emergency room. They were fantastic. They had him committed to one of their mentally ill facilities. What a difference in him. He was placed on different meds. He seemed so much better. It's been uphill with some back sliding here and there, but nothing really serious.

He has since been put on SSI, as he is unable to hold a job no matter how hard he tries. He has a hard time being around people. So he is living with us. He has a hard time sometimes remembering to take his pills which causes some problems. This is why we decided to keep him with us. He's been grateful to have the support, but on the same token would like to have his freedom. He has a lot to learn and deal with first. He is working on becoming a private computer programmer. We sure hope he can pull it off. It would be good for his self esteem.

Since his dad & I have been back together, life has been looking up. We all recently--a little over two years ago--quit drinking and smoking. Every once in a while our son will give into pressure and start smoking again. Thankfully that phase does not last long. We have become church goers as well which has been a tremendous help to us all. We have become dedicated Christians. Our son is doing much better. He has moments where we worry, but he comes through it. He still has a very hard time being around people. Even at church. Hopefully someday he will be able to get past all that.

I too am mildly bi-polar which I found out a few years after our sons diagnosis. Thankfully mine has stayed controlable. At one point I had hoped to go off the medication, but ended up very depressed and no longer wanted to go on living. Once getting back on medication, I improved greatly. Thank the Lord!

So that is the jest of things in our lives. We have been through a lot. I'm hoping to reach out to those parents who are living with children of mental illness and are experiencing a hard time comprehending, understanding their child, and wondering how they are ever going to get through it. I'd be happy to discuss situations and perhaps be able to help in some sort of way. Also for kids if they feel they need to ask questions and/or just need someone to talk to. I'd be more than happy to listen and perhaps be able to help in some sort of way. Good luck and God Bless!