Friday, January 31, 2014

I Thought I Was Losing My Boy (Medication Interaction)

For those of you who caught my "tweet"/post last night about Thomas, I am sorry I didn't respond. I know I must have scared you but I was scared myself so I tweeted this out really fast and then sat vigilant by Thomas' side for a good part of the night.

All I wanted yesterday was a quiet day. Just one of peace. Things went along pretty decently until Thomas' therapy. I got called in to it with Thomas to do an update and as we went through the session I was painfully aware of how much I am losing my boy. I can't even put into words right now what transpired because I can't breathe right now because of what I learned about his state of mind and then what happened afterwards. Someone mentioned to me the grief we feel as we lose our loved ones to schizophrenia and I think that is something that I will have to address here again sometime soon.

After therapy we went home and Thomas got ready for work. He hadn't eaten a thing all day so I wanted to be sure to get a good meal of spaghetti and meatballs and a big salad in to him. Before eating he took his meds. He has just recently gotten propranolol to help with his anxiety but what that drug's first use is for is lowering blood pressure. Doctor's prescribe it now for anxiety also because it blocks some of the anxiety response and they have found it a safe, useful drug for that. So, Thomas took his 200mg of clozaril, his propranolol and a lorazepam (an anti-anxiety pill) to help his over the top anxiety about going to work. He was suffering so much and after therapy I just wanted him to have a little peace going in to work. That was not to be.

He took his meds, ate his dinner and was fine for a few minutes and then he got up complaining of dizziness and that he couldn't focus his eyes and so he went to get his reading glasses. When he came back in the living room he was stumbling and holding the walls and door jambs for support. He said he felt dizzy and that he couldn't see straight and as he was telling me about this his words began to slur. He could barely get himself sat on the couch because he was so dizzy and uncoordinated. I watched him as his eyes would roll back in his head and his head would fall and he would pick it back up again and try to focus on the TV or his phone. He got up again to go use the bathroom and came back still stumbling, still (now worse) slurring his words and he said he was nauseated. I got on the phone with the pharmacist and asked if his meds were ok to mix and he said they were but that Thomas must have been having an uncommon reaction to them mixed together. This gave me zero comfort but because I know he hadn't O.D.ed I continued to keep an eye on him. He decompensated rapidly but insisted with slurred words that he had to go to work. He tried to stand up again and fell back into the couch and his head crashed to the arm of the couch. I told him I didn't think he should go to work and he didn't answer me so I reached for his face and turned his head and he was out cold!!! He had passed out!!! I shook him and he opened his eyes and I asked him what he was feeling and he said with slurred words,

"I'm exhausted."

Then guys, honestly, I didn't know what to do. I knew he hadn't taken too many pills, I had called the pharmacist and he had said it was ok to mix the pills and yet here was my boy laying passed out on the couch. I went and got our blood pressure monitor and checked his blood pressure and it was 96/58. He's been low like that before so I didn't consider it too scary but it still concerned me. I got him up and helped him to bed and sat with him for a while. I continued to monitor his blood pressure which continued to drop a little as the time went on.

At this point he was late for work. He had already missed a shift earlier in the week and now this. Luckily the manager that knows Thomas has schizophrenia was there when I called and I told him everything that was going on and he was so understanding. He was simply amazing in my eyes because Thomas had already missed a shift and now here I was, Thomas' mom, calling in for her boy and explaining that he was overmedicated. The manager told me Thomas could work tomorrow if he wanted and I told him that would probably be ok and then I hung up.

I took up vigil beside Thomas on his bed for a good part of the night, waking him every 15 minutes and checking his blood pressure. I was frozen in that I didn't know if I should call 911 but I just pictured over and over my boy slipping away into death.

I got a little sleep last night but woke very early this morning to check him and he is ok.

He is ok.

Thank God.

So, let me tell you this. Clozaril has the effect of lowering your blood pressure. It's why there is a warning label on the bottle about dizziness. It's why Thomas stands up too fast sometimes and has to sit back down because he's dizzy.

Lorazepam (the anti-anxiety pill) has the effect of lowering your blood pressure and upon further investigation online, I discovered it has a major interaction with clozaril and should be monitored when taken together.

Propraolol (the blood pressure/anti-anxiety med) has the effect of lowering blood pressure and has a MODERATE interaction with clozaril.

Taking them all together like Thomas did essentially caused a major drop in his blood pressure hence the dizziness, stumbling, slurred words, passing out and other symptoms. nobody told me this. Not in the way that I ever was able to put 2 and 2 together. I had gotten no warning paper from the pharmacy saying this could happen and (embarrassingly) I'll admit that I hadn't Googled the mixture of those meds. I had trusted Dr. N. in prescribing them in tandem, I had trusted the pharmacy but I had dropped the ball myself with my research.

That, I can promise you, will never ever happen again.

So, needless to say, yesterday and most of all last night was a pretty awful night. I try to picture my life without my boy who is already lost to me because of schizophrenia and I can't.

I won't.

I fight daily to keep him with me emotionally and psychologically and in the last few weeks I have been losing him. For now though, for today, even if schizophrenia is eating him alive, he is alive and he is with me. I will never again not research to death medications and their interactions. I will never again trust another professional to decide if something is good for Thomas.

I almost lost my boy last night and I am forever changed.

Thursday, January 30, 2014

What A Difference A Day Makes

I hope you guys can forgive me for being so reactive about Thomas WBC test and all that the pharmacy told me. In the moment I was in a complete panic because I'm desperate to get Thomas well and after finding out about his counts I just lost it. I did end up taking him in to get the tests redone. I practically dragged him out of bed to go which he wasn't happy about but I couldn't sit on this for even a moment. After the test the waiting began for the results. It's amazing how slow a few hours can pass as you wait for important news. I had planned to have a relaxing day doing nothing but things that make me happy (I'm currently having tons of fun with Facebook slot machines) but after the call about Thomas WBC's I couldn't relax, I couldn't do anything but worry. In time, I heard back from the pharmacy and it was good news. His levels were back above the line but still low but we are able to continue through another week of clozaril. All I can say is thank God because doing anything less than that was going to kill me.

When I got to the pharmacy, which by the way is a new one for me because I had to switch to them for Thomas because they are the only ones in my area that dispense clozaril, the pharmacist met with me. I'll probably say this a lot but I'll start now with this. These people are absolutely amazing. They know their stuff about meds (especially Thomas'). Anyway, the pharmacist talked to me about the clozaril and asked how Thomas was doing on it. I told him that things weren't changing and he told me to be sure to let the doctor know about that. I told him I did but that I was desperate for it to work because I was watching my son slip away. This man, this pharmacist, took time away from his work to talk to me about clozaril and how it works and how long I can expect to have to wait for it to begin working. He was dismayed to learn that it had been 6 weeks with no good results but he reinforced that this drug takes a long time to work. There it was again, someone else telling me I have to wait this out. I have heard it a thousand times now but I am unable to draw any comfort from that at all. The pharmacist, though, was very considerate of my feelings and tried so hard to comfort me. He didn't have to take the time to do that but he did. He and his employees are to be commended for their amazing kindness and abilities to go FAR out of their way to educate me and help me get things orchestrated with this medication.

Apart from all of that, I have to say that Thomas had a pretty decent day yesterday. He's obviously still struggling, I see it in his face and movements but he did have the curtains in his room opened yesterday, he was patient with me when I popped in and when I texted him from my living room chair little things here and there and sent them to his room (LOL yes, texting from one room of the house to another) he answered them right away albeit with an "OK" but he answered immediately which made me happy. He ate dinner out with the family and even managed to laugh a little bit at the show we were watching so for yesterday I felt I had my boy back a little bit. He said he is now going to bed at a decent hour after a talk I had with him about that and this is at least reflected in his social media postings which all now take place before 10pm.

Once again, today is a new day. I slept last night, my husband has brought me my fruit and coffee this morning and there is nothing on the schedule to get done today. My goal is to attempt to have the day today that I wanted to have yesterday and that is a quiet one. It's amazing what a difference a day makes. Here's hoping today is a better one.

Wednesday, January 29, 2014

Fresh Start

Yesterday was something pretty close to hell for me personally. I don't know what the heck was wrong but I was cycling through every negative mood a person can dream up. I had had a rough day the day before and couldn't wait till the new day and then I got what I got. Hopefully today will be better.

Thank you to all of you who responded about Thomas missing work. You helped me so much especially because I was pretty crazy yesterday. I'm not entirely sure Thomas was as anxious about missing his job as I was. That's not to say he wasn't worried but after calling the manager and finding out that the problem couldn't be addressed until today, he went right back to playing on his computer. Meanwhile I sat in the living room crying. He will call his manager today and this guy is the one that knows he has schizophrenia and is going through meds changes so I'm hoping he'll just write Thomas up but will leave it at that and get him a spot somewhere on the schedule. Thomas has been a model employee up to this point except for one time he didn't catch a box coming down one of those rolling ramps and everything broke in it but I figured when that happened that they should chalk that up to him being a new employee.

Yesterday I was all over the map with my thoughts and feelings concerning Thomas. He has started staying up till 2am doing God knows what on his computer and then he sleeps until 1 in the afternoon. He's been in a rotten mood and I have stood by and watched as he has gotten worse. I sat down with him yesterday and talked to him about the importance of keeping a normal sleep schedule and that it was imperative for him to do so with his illness and he sat there the entire time and glared at me. He argued that he wasn't staying up late except that I check his social media religiously now and I can see exactly when he posted things and he's doing it all after midnight. I was trying to find a way to let him know that I KNEW he was up past midnight without using his social media as an indicator because I am wanting to keep him feeling free to post what he wants to it without feeling like I'm keeping tabs. He denied staying up late nonetheless and continued to glare at me so I left his room, again in tears.

The thing is, I was never excited for him to have his new computer built and up and running because I knew that this would happen. Along with that, I knew that I would have virtually no control over his life where that was concerned once he got it going. I miss the days of being able to do things like take away his TV because he stays up too late watching it or even going so far as to pull the cable back through the wall so he couldn't connect anything to it. There was such power I held over him when he was a kid and it helped him stay healthier than he is now because he was forced to keep the schedule I set out for him. Taking his computer away now just isn't an option but admittedly I could secretly disconnect his internet access but I'm just not prepared to do that right now since I think it's more important that he learns his limits. Right now him learning them is a colossal failure.

So, today is a new day. I'm pretty heavy hearted but hopeful that I'm going to see his face before 1pm. My wish is that it will be a bright face but that hasn't been the norm lately. He's wracked with side effects from the increase in clozaril so he's really not feeling all that great--which is why I would like him to go to sleep at a decent hour. We'll see. As for his job, I will let you know when I hear about what the result of his call to his manager is.

Thank you everyone for being an amazing support to me. ♥ It does not go unnoticed. Not even a little bit.

Tuesday, January 28, 2014

Dueling Doctors

On Sunday night I sent a copy of Thomas' most disturbing posting to his therapist and his psychiatrist. I did that because I was worried about how depressed he sounded and even though he stated that it wasn't a suicide note, I was worried about him taking his life. He had told me he was fine but from past experience I know that oftentimes you say you're fine to get people off your back and then you attempt to take your life. I also sent along another posting of Thomas' to his therapist because it showed that he's still very much delusional and I thought he needed to know about it. It's funny, I know I need to be patient with this clozaril and I am told it can take up to 3 months to work but in the mean time, it seems like Thomas is getting worse. I was/am worried so I sent those things off.

I waited all through Sunday (even though I was fairly certain I wouldn't hear from either of them on a weekend) and all through yesterday to hear from both of them. As the day wore on, I began to wonder if either of them cared and I wondered who would come in first with their thoughts. It became a race, of sorts, in my mind with the two professionals opinions of what to think or do, as I waited for something...anything from one of them.

While I waited yesterday I hung out in my support group and talked to people about their experiences with their loved ones on social media and I read your responses here and overwhelmingly everyone told me to leave it alone and let Thomas express himself. I was thankful for this because I was starting to feel like a bad mom because I wasn't putting a stop to it immediately. My argument for not doing that was, and is, that I now have a window into his mind and lately I have needed that. So, to all of you who supported my keeping my mouth shut about it, I thank you. The threat about his life was not ignored though hence the emails to his therapist and a talk I had with Thomas as I took him to his blood draw for his clozaril.

You see, he SAYS he's fine but yet again he hasn't showered in days, he sits in his room on his computer in the dark watching YouTube videos and playing video games and he is sullen and very short tempered with me. I tried all day yesterday giving him space but as the day wore on I began to wonder if this was what life was going to be about. Was my child going to spend the rest of his life living with schizophrenia, anxious, depressed, angry, dirty from not showering and isolated from the world? He IS 19 now so it's not like I can ground him from his computer or take it away from him. I am now a powerless mom forced to stand by and watch her son sink further into insanity. This isn't what I want for my boy and I am scared as I watch him disappear. This is not a life. Not for me and most certainly not for him.

Then at around 5pm my beloved Dr. N. wrote me back about his thoughts on Thomas' social media postings. It seems he won the "duel" and came through for me. The amazing thing is that not only did he come through, but he came through with a very long email full of ideas of what we could do to help Thomas. I will tell you that he agrees that Thomas needs some medication augmentation and is hesitant to increase his Wellbutrin since it has a tendency to increase paranoia and Thomas is not free of that yet but he did say that clozaril has an anti-depressant effect to it so he was hoping that would help Thomas soon. He also said that he felt we needed to increase the clozaril and in lieu of an increase in Wellbutrin, add another anti-psychotic to help with the delusions. Beyond that he told me in a very sweet manner how much he appreciated the information that I sent him and he liked that he has that ability to get a better view of what is going on with Thomas. Then the topper for me was that he signed the email with his first name. I know...no big deal right? Well, I have always felt doctors, especially good ones, were worthy of being called by their hard earned title of "doctor" but him personalizing the email made me see him in a much more friendly light. As if I didn't already love the guy. ♥

So, for now, we continue to keep an eye on Thomas. I thanked God this morning when I checked Thomas' various social media outlets that I didn't find anything that worried me. I don't think I could have spent another day in the state of worry that I was in yesterday. Apparently though, waiting is going to be the name of the game so my getting right with that needs to happen soon or all of this is going to kill me.

Monday, January 27, 2014

Social Media And Schizophrenia

This morning I am a little bit choking back nausea because some things happened over the weekend with Thomas that concern me a great deal. It seems he has become prolific on his social media, freely sharing his views on world issues and feelings about himself. It turns out he has been staying up till 2am playing on his new computer and feels compelled to write things that he truly feels and believes. I think the late hour and the fact that he's alone with himself is giving him some sort of freedom in his mind to let loose.

The problem is, as I well know from writing this blog, the minute you put your feelings out there they are PUBLIC. Oftentimes you can't take them back or even delete them and you pay the price for that when your views are extreme or polarizing. What Thomas is saying is of grave concern to me because he is saying things that are extremely unpopular about world history and then also his own current view on politics. I'm extremely concerned about him and his state of mind. You should see him though during the day. After the first posting about how he's feeling, I checked in with him and he said he was ok but there was nothing about his posting that said he was ok. Then this morning, after last night's posting, I haven't gotten a chance to check in with his mood but I know from past experience on this particular subject that he has denied to me believing in this stuff and yet there it was in black and white this morning, a statement so gruesome about an event in history that clearly shows that he believes these things to be true contrary to what he tells me. His illness is becoming clarified over this last weekend and it isn't good.

I worry even more because of the most recent story in the news about the young man (19 years old like Thomas) who went into a mall and shot 2 people. I listened to the national news last night and they talked about how the police searched the home of this young man (who incidentally lives with his mom like Thomas does) and found things in his room that showed that he was obviously a disturbed young man (wouldn't the police find similar things in Thomas' room and on his social media right now given what I've seen over the weekend?). I'm not saying Thomas is going to shoot anyone, I fully believe he never will since in his life he has only been self destructive but that news story brings to light some of my greatest worries and concerns about Thomas over this last weekend. Here he is putting concerning information out on social media and he's setting himself up for scrutiny not just from his friends but from family and anyone else who might look into his presence on social media.

Needless to say, I have forwarded all of his postings to his therapist and psychiatrist and I have now placed it in their hands as to what to do with this stuff. In my humble opinion the clozaril is far from doing it's job and I believe Thomas continues to sink further into his illness as the days and weeks pass. I am worried for him. I was worried before based on what I knew to be true about him and I worry even more now because he's going public with what's really in his mind.

What is a parent of a young man living with schizophrenia supposed to do in this situation? It became evident to me a while ago that I am powerless to change Thomas' views on things so in the absence of my influence on him, what can be done?

Friday, January 24, 2014

The Results Of Therapy Day

What a day we had yesterday (and for me, last night too). We had 3 appointments to get to, one was mine and two were Thomas' and all of this entailed an hour's drive both ways. Poor Thomas was wracked with anxiety about getting to all of them and since mine was first on the list I tried to lighten him with the fact that if we were late, that it would be m...y appointment we were late for so he didn't have to worry. That didn't work. Since he's now completely obsessed with being on time to everything, any scheduled event anywhere elicits his sky high anxiety. I'm hating that he has to deal with this level of anxiety on top of all of the other stuff.

I have got to say that I really really love Thomas' new psychiatrist (I'll call him Dr. N from now on). He really seems to love his job and even better he seems to care about Thomas. He called Thomas in alone and spoke with him for 20-30 minutes and then he called me in. After being in on all meds appointment's for a year, not being called in for the whole session has been surprisingly difficult for me. I had to remind myself that these appointments are about Thomas and he needs to learn to speak up for himself. What he did leave out though I was able to fill in when I finally got in there. I emphasized that I was concerned about his anxiety so Dr. N. added propranolol to take regularly. It's actually a blood pressure medication but it apparently helps anxiety too so we'll see. Thomas was grateful to take on this new medication as I discovered in session that he suffers much more deeply than I knew. He is now also on a therapeutic dose of the clozaril. He is at the low end of it but it is finally at the right dose. I feel like I can breathe a little bit now. Just going up a half a pill last night though caused quite a few side effects for Thomas which surprised me. He has not been hit with much since he began this drug. I expect he'll sleep most of today though.

Then came his therapy session back in town and he went into that alone. I was secretly grateful I didn't have to go in because I'm sick and tired of hijacking his therapy. He came away from that session with a 3x5 card of tips on how to manage anxiety that he has to memorize. I have to wonder if he'll actually follow through on that. They were in there together well past the normal time so I feel good because I know that was quality time for Thomas with his therapist.

As for my own session with my psychiatrist, I spent an hour with her and since I hadn't seen her in 8 months I had a lot to tell her about. She was shocked and told me that I'm an amazing person for still being on my feet. I took this as a HUGE compliment because this lady is someone I HIGHLY respect and if she sees something good in me then it means the world to me. After hearing about my life she asked me what she could do for me. She wants to help so badly but there's really nothing anyone can do to "help". What she did offer was a change in my medications which I reluctantly agreed to give a try. As it turns out my reluctance was well founded because the medication given to me to help me sleep and calm me down (Zyprexa) actually instead amped me and made it so I couldn't sleep last night. What I did do was fall asleep long enough to have a horrible nightmare and then wake up to see the clock and that only a half hour had passed. I did that lovely cycle all night long. Needless to say I am not a happy camper this morning and I won't be staying on this new drug. I needed something to help me manage my bipolar agitation/anxiety/OCD-like qualities and instead I am 10 times worse.

So, when all is said and done, it was a decent day for Thomas which is what is most important here as far as I am concerned. We'll see how the next few days go with the propranolol and the increase in clozaril. I know that a part of me is expecting miracles but the truth is what is ahead is more waiting and watching. Dr. N. reinforced (as did my own psychiatrist) that this is going to take time to get him better and that we have a lot longer of a wait in front of us yet to go.

Thursday, January 23, 2014

Therapy Day

Today is a big day mostly for Thomas but for me too. I will be seeing my psychiatrist for the first time in 8 months to see if I can get my own meds straightened out. What's very cool is that her office is in the same office as Thomas' psychiatrist so we've got a little bit of a two for one going today. Thomas' appointment is at 1pm and he has regular therapy at 3pm and it's an hour's drive between the two so this will really test his anxiety. Quite frankly, for some reason, I am nervous about all of this myself so I have been working to get that under control so that it won't rub off on Thomas. I haven't told him how big the day is yet and I know he's hoping for a burger from his favorite place up there too so I'm hoping I can squeeze it all in. We shall see.

As for everyone's meds being adjusted, for me, I'm nervous about it. My meds have a tradeoff (well, I guess they all do) and I don't know how much I'm willing to trade off to feel better. For one, they help me sleep and probably 60% of the time help me get through my day with very few symptoms but they give me nightmares and make me sleep like the dead so I have back problems every single morning from sleeping in the same position all night. Not to mention the always fun weight gain (which I don't need at all) oh and let's not forget the raging hunger pains about 2pm that I have to fight like crazy not to indulge (because if I do I eat a lot and that adds to the weight gain). So, we shall see what happens. Maybe she has some other trick up her sleeve for me that might be worth entertaining.

Thomas' meds will be a different story. His blood tests are reflecting a drop in white blood cells but nothing to worry about yet. The pharmacist read me the warnings on the drug and it said that the first 6 months of the meds are when, if they're going to drop, they'll do it pretty rapidly. Knowing that, it's kind of looming over me that Thomas may not be able to stay on the Clozaril. If that's the case then I'm interested to see what's next. Since I don't have to worry as much anymore that this is a "drug of last resort", I have to wonder what could be done next for him. As for side effects he is dealing with excessive drooling at night and it's starting to get to him but we've worked out a plan of changing his pillowcase all the time so at least he's clean as much as possible. The other thing he's dealing with, and I feel horrible for him because of it, is constipation. I finally got him to agree to take a natural laxative to try to help the problem but as always he is wary of new pills. He's pretty miserable though so something has to be done. On top of that, his dosage increases tonight which won't help matters much so we've got to get a handle on this A.S.A.P.

So, we're on our way out in the next hour. It's an hour long drive through pretty country and luckily the snow stayed away so it should be a pretty nice drive. I'm going to let Thomas be the D.J. on the trip and he gets to pick the music so he brings his mp3 player and plays me songs. I'm really coming to love this because I get a little window inside of him. He plays a lot of songs filled with anger and talking about insanity to name a few. There's nothing like a song to bring out our true feelings and beliefs. It always opens up a conversation between the two of us and he gets a chance to talk about his feelings. I couldn't ask for a better situation.

I'll let you know tomorrow how things went with the meds and therapy. I'm praying for a good day today.

Wednesday, January 22, 2014

The Neighbors

I have griped a lot about my new neighbors over on my regular Facebook because for me personally they are very annoying. They talk very loud, they drink and smoke out on their back deck and their back porch light is like a massive stationary search light that floods my back yard with light making it difficult for me to go out there and get some fresh air and decompress. They always want to talk and my most favorite thing of all was the conversation I had with them where they had all kinds of nasty things to say about mental illness. I stood silently as they went off about "crazy people" and I laughed to myself because if they only knew, they have a regular asylum living next door to them.

In addition to that, our houses are pretty close together and they have a big picture window that the previous neighbor would keep the curtains closed on so we would feel like we had some privacy when we went out our back door or stood in our kitchen. Well, that is just not to be anymore. They love to open that curtain and keep the lights on and best of all, if they are looking out the window when we go by, they want to wave and be friendly. I guess you could say I'm a pretty anti-social person, at least when I'm home and I am most interested in my privacy and in avoiding any conversation with anyone. All of this I can survive though. I'm annoyed but I'll survive.

The problem lies with what their moving in has done to Thomas. That curtain they leave open that I mentioned? Well, that window looks directly into Thomas' bedroom window. Take my annoyance and his paranoia and that is what he now lives with. I feel terrible for him because he's trying so hard to get better and then these people move in and invade his world making it harder for him to keep his paranoia at home at a manageable level.

Then yesterday, the worst possible thing happened. They had workers of all kinds there but the one that caused the biggest problem were the Dish Network guys. They milled around between our yard's and I avoided the whole situation, again because I didn't need to have a conversation with a bunch of strangers but after they left, I went out my back door and was stopped in my tracks. Right outside my back door, right directly and just above Thomas' bedroom window, they had installed a massive satellite dish. No big deal right? I mean it's just a dish and aside from, for me, it being an eyesore, it's no biggie.

For, Thomas, his first fledgling delusions came when he looked to the hills surrounding our town and somehow decided that all of the antenna's and dish's up there were there to track him. For years, and even now, he believed that. Now, outside of his bedroom window there is this massive dish beaming God knows what, in his mind, to God knows where (probably the government) and now his paranoia is increasing again. You should see him when we walk out the back door of the house. It's as if their is an evil, living gargoyle perched on the roof just above his head. He side-eye's it and tries his best to circle around it which is just about impossible given that there is probably 8-10 feet between our houses. I feel horrible for him.

Naturally I would love to tear that offender off the roof of the house and if Thomas gets sicker I may seriously plan it's demise but for now, I'll leave it alone. My mom told me I should say something to them and see if they will move it but when I repeated to her what I would have to say (my son has paranoid schizophrenia and is quite sick right now and that dish you just installed is making his paranoia worse. Could you please move/remove it?) can you imagine THAT conversation?

So, for now Thomas has his curtains closed. He is now locked in a cave which I hate for him and leaving the house has now become a true test of his resolve.

Tuesday, January 21, 2014

You Win Some & You Lose Some

I read over everyone's comments yesterday about Thomas not showering and I gave a lot of thought to what everyone said. I thought I'd begin trying to get him to shower by doing it in the most cowardly way possible and that was to leave him a note. I was going up to my dad's to visit him and Thomas wasn't awake yet so I thought I'd toss the idea of showering into the note in the hopes that I could avoid any arguments. I wasn't sure it would work but I thought it was worth a try.

As it turned out, I got back home before he woke up so I decided to take page member Barb's suggestion to tell him that we had things to do today and that it was a shower day for both of us so he should do that and get ready to head out to do those things. He slept until 12:30pm though so I finally stopped avoiding the inevitable and went in to wake him up. He had his blood tests for his clozaril to do that day and he had half-heartedly agreed to go shopping with me afterwards so I thought I would throw in that we were going those places and it was probably a good idea to shower for that. To my amazement, it worked! It actually worked! (Thanks Barb!!!)

So with my sparkling clean young man by my side we headed out to do errands. I thought, since he agreed to go, that he would have a decent time. I had planned to bribe him with being able to pick out something special he wanted to have around the house to eat but as we shopped I watched as he slowly decompensated. It's funny that after all this time I still think that his negative reactions to things are just "typical" but by the time we were in line at the last store (and it was VERY crowded) he was going out of his mind with fear and frustration. I offered him the keys to the car and told him he could go sit in it till I finished up. He refused stating that he wanted to stay with me and help. I knew that he didn't want to be there but it dawned on me that he was afraid to leave my side and weave his way through the crowds on his own. I felt absolutely HORRIBLE for him and willed the customers ahead of me to hurry up with scanning and paying for their things so that we could get done and I could get Thomas to the safety of the car.

By the time it was our turn he waited at the end of the belt to grab the groceries and put them in the cart and he stacked everything up neatly at the end of the belt and waited till I could get the cart down to him. When I did he began loading it. As I paid and walked towards him I could see that he was in a panic. He had put the biggest, bulkiest items in the cart first and left no room for the HUGE amount of little things still to go in. I was somewhat taken aback by this inability to get the cart loaded right but I realized that he was so anxious and pressured to get the cart loaded and get out of there that he wasn't taking the time to do it properly. To make matters worse, when I got there I had to unload the whole thing and start over and when all was said and done he was a wreck. What was meant to be a kind of fun mother/son day turned into a nightmare for him and I felt terrible.

Needless to say, when we got home, he helped me get things in the house but then bailed to his room before things got put away. I couldn't blame him at all. When I went to check on him later he barely looked up from his computer and said that he was fine but it was apparent that he wasn't.

So, you know? There was triumph in my day because I got him to shower but for him the entire day turned into one of his worst nightmares. The old adage "you win some and you lose some" was never more true than yesterday. I had "won" by getting him showered but we lost a little piece of him in the checkout line of the last store we visited.

Monday, January 20, 2014

Is It Worth The Fight?

I'm in a really strange place right now because what's happening is worrisome but it's also confirmation to Thomas' doctors that something is going on. I never know quite what to do in situations like this.

In the last 3 weeks, I have noticed that Thomas has significantly slowed down on his showering schedule. For a while there, I was kind of letting it go by because my mind has been occupied with so many things having to do with him and my dad and my mom. Here and there I would notice his greasy hair or that he looked scruffy and I knew that this was a sign that he's not doing so well but I let it go. I did think though that since he worked Saturday that he would shower beforehand because he usually does.

I came home from visiting my dad on Saturday and found Thomas in his room and initially he looked clean to me. I commented on that it was nice that he had showered and he looked down and he quietly said that he didn't. I told him he looked clean but then realized it was because he had shaved. Well, at least he had done that! He told me that he would try to shower later but he said it in such a dejected tone that I felt bad for him. Then I hugged him tightly and while I did that I said to him,

"You don't feel much like showering lately do you?"

To that he said "no" and he just sounded so beaten down so I told him that I understood but that I wanted him to shower sometime soon. Well, here it is Monday and no showering has happened for days. We have done the run around before, countless times, both my husband and I trying to get him to shower and it's been met with resistance just about every time so I have kind of given up fighting him on it but will offer gentle reminders. The problem is, none of that is working anymore and now we've stacked a lack of self care on top of everything else that is going on.

Needless to say, since I don't want to fight him about it, I have left it alone but inside, part of me isn't fighting a little harder because I want his doctors to see for themselves how he's doing. There's nothing more striking than a flat-mooded kid looking disheveled. I wonder though, am I doing the right thing? In the past week I have answered back to myself that it wasn't like I hadn't tried to get him to shower, it's just that I hadn't launched into a lecture that would generate a fight with him.

I don't know....I guess I've just been beaten down so much lately with everything going on, with his worsening symptoms and my dad changing into a delusional, hallucinating, agitated, depressed person himself. My dad is a whole other flavor of heartbreak to deal with right now. Between the two of them, I feel like I have been assaulted by the "psychosis God" who is tossing everything at me in order to test my resolve. I've got to say, I feel like I'm fighting a losing battle right about now.

So, I don't know. Is it worth the fight to get my 19 year old kid into the shower? I'll keep up with my gentle reminders but since they don't seem to touch him enough to make him shower then I am at a loss.

Friday, January 17, 2014

Wow, Really?

Yesterday was Thomas' therapy session and I was once again lucky enough to get to sit in. It was not my intention to be there but lately his therapist has been wanting updates from me too so, in I go.

To begin with, Thomas has been fighting SERIOUS anger issues in the last few days. They've been sneaking up for a while but have never been as bad as they are lately. The anger is centered around the set up of his new computer and while I understand and I totally relate to being mad at a computer that doesn't work, the concern with Thomas is his level of anger (an 8/10) and the fact that he gets locked into it and nothing and no one can get through to him when he's like that. I have tried taking him over to throw glass in the recycling bin and that hasn't helped and I have walked miles with him trying to help him calm down. I've tried to offer perspective on the situation to no avail and now it's come to me just trying to stay away from him more out of fear for my own safety and because it's become obvious that I can't calm him down. We tried to work on that in therapy yesterday but it didn't work. I could tell his therapist was concerned when even he couldn't touch it. I don't know what I'm going to do for him and feel even more worried because the professional wasn't able to help either. Now what?

Next we talked about Thomas' increasing anxiety. As I described to his therapist how it's been ramping up and as Thomas confirmed the high levels he experiences and the fact that his anti-anxiety med doesn't touch it, I watch as his therapist became very sad. I'm always watchful about his reactions because I like to see when a light bulb goes off and I can relax for a minute because I know he's about to come up with something great. Instead, at one point, I looked at him during the anxiety talk and his eyes were welled up with tears. This broke me down but I managed to keep my emotions under control. What do you do when the therapist is overcome with emotion? While I think it's really sweet and shows his humanity, I wished more than anything that he had something to offer. He sadly told Thomas how anxiety can be a bully and that he didn't want him to give in to it if that is at all possible. I told Thomas later about my own experiences with anxiety and how it had won against my valiant fight against it and I told him I wished for him to not have to deal with it. I promised him I would try to help him cope but the truth of the matter is, I know that nothing touched mine and it's apparent that nothing is going touch his. It's very hard to see him suffer like this and I'm especially in tune with this particular kind of suffering because I've been there myself and know how it can downright own you. I don't know what's going to happen but I know that this just can't go on like this too much longer. Neither can the anger. The dam will give way eventually and I'm not sure what's on the other side of that.

Finally, and what amused me the most for some strange reason, his therapist brought up that chapter he had given Thomas to read. I looked at his therapist then at Thomas and then back at his therapist. Thomas piped up that he hadn't read it but that I had and he left it at that. Then I waited and gave his therapist "the look" and wondered what he was going to say next. Honestly, inside, all I was thinking was, "wow...REALLY???" After all that I had said to him in my email (which I went back and read before session and decided it had been well worded and fair) I couldn't believe he was broaching this subject with Thomas. He sat there for a minute saying nothing and I smiled to myself and his therapist came back with, "Well, never mind. Let's leave it be." TRIUMPH!! I was so happy that he was smart enough to leave it alone. The real truth of the whole moment was that Thomas said he had not read it and I knew that I had done my job and remained, to Thomas, indifferent about the chapter and he had chosen, on his own, not to read it. All I can say is that what I wanted prevailed and with it left to hang in the middle of a quiet room filled with an awkward silence on mine and his therapist's part the subject was left to flicker and go out on it's own.

So, the real take away from Thomas' session yesterday is that his anger and anxiety are HUGE problems that need solving and with no help available and another week ahead of us before we see his therapist again, not to mention Thomas' new work schedule, I don't know what we're going to do. I'm very worried about my boy and as per usual lately, feel completely helpless.

Tuesday, January 14, 2014

Recovery From 'Psychosis'

A couple of weeks ago Thomas' therapist gave Thomas a chapter from a book to read. Before giving it to him he asked me if I thought it was a good idea given Thomas' "suggestability" but I couldn't figure out how the story might be a problem for Thomas if it was about a woman recovering from schizophrenia psychosis so I approved of him giving it to Thomas. Thomas didn't read it and yesterday I asked him if I could take it and read it. What I read completely ruined my ability to sleep last night because what I discovered within it's pages was something that I believe Thomas shouldn't touch with a 10 foot pole.

For starters, the chapter was titled "My Recovery From 'Psychosis'". Yes, the word psychosis was in quotations and right away that struck me as odd. When people put a word in quotes, sometimes it means it's because the meaning is different than what it usually means without the quotations around it. I should have known what was to follow because of that but I didn't so I dove into reading the chapter.

What followed was a story about a woman who had been through unimaginable trauma in her life, terrible abuses that caused her to view her world in a skewed manner and rely on dissociation to cope. She heard voices and was paranoid and because of those two things it made me catch for a second on that this story was about schizophrenia. But as I read further, I realized this woman's story was about her recovery from D.I.D. For those of you not familiar with it, D.I.D. is dissociative identity disorder (known in the past at multiple personality disorder). This woman had been through hell in her life and had become a cutter and a chronically, seriously suicidal person. Her story was sad to read. What was even more familiar was the essence of the story which rang true to a loved one of mine's struggle with D.I.D. also. Her story is even worse than what I read because her abusers were cruel and methodical and their intention was to create in her a system of alters that would perform certain functions in her life, not the least of which was to carry out acts of smuggling, espionage and even sicker, sex acts for an audience of sick, bad men. Her life was horrific and who she's become as a result is a shattered soul, pieces of a person not cohesive and able to cope with life in the way that most of us do. So like my loved one, the woman in the story was an almost textbook example of D.I.D.

So, that begs the question, why is Thomas' therapist giving this sort of reading material to Thomas?!?!? Even further questions are that of what does this man think Thomas has? What does he think that Thomas has been through in his life that created his 'psychosis' and does he believe Thomas is D.I.D. and not schizophrenic? I am enraged because MY child never went through the things that this woman did. MY child is not chronically suicidal, MY child is not a cutter and MY child just flat out does not identify with this woman in any way other than as far as I could glean from the story that he suffers from paranoia and delusions both of which are born of an inability to see government and politics in a rational manner. Nowhere in his life were there people telling him that he was being watched by the government or that he needed to be looking over his shoulder for agents just waiting for the right opportunity to abduct him and imprison him. His world is completely his own creation reinforced only by schizophrenia's cruel march through his brain to tighten a noose of paranoia and delusions and hallucinations around him, crippling him for the rest of his life.

Needless to say, I am extremely angry about this choice by Thomas' therapist for reading material for Thomas. Thomas does not suffer from 'psychosis' (in quotes) he suffers from genuine psychosis and actively fights through it every day of his precious, sad life. I couldn't sleep last night because I couldn't fathom why his therapist would take things in this particular direction. Surely there are stories out there of people with schizophrenia who are working to find remission for a time. Those are the stories to read. Those are the stories of inspiration and hope. Those are what I would encourage Thomas to read so that he could find hope and encouragement too.

Ultimately, after reading it and processing it and checking with a couple of rational people (since my anger and anxiety were piqued) I fired off an email to his therapist asking him exactly what his intentions were by giving Thomas this story to read. If in fact he believes Thomas is D.I.D. then that is a VERY SERIOUS conversation that he needs to have with me to further explore why that might be. D.I.D. is not a diagnosis to throw around lightly nor are stories about it ones that should be given to a suffering, depressed, flat, anxious, withdrawn young man concretely diagnosed with schizophrenia by not just one but SEVERAL professionals. Neither is schizophrenia to be tossed out cavalierly as a diagnosis. These two things are very frightening diagnoses and if we are going into D.I.D. territory with Thomas then there will be some serious time taken with me to further explore this as a possibility for Thomas. Personally, I think his therapist got it wrong, way wrong and I await his response to see what his original intentions were for giving that chapter to Thomas.

Monday, January 13, 2014

Here We Are Again

I know. I know so many of you are going through the same thing but oh my gosh this is just not easy. I'm in the weirdest place in my opinion because I feel quite powerless to change things for Thomas and all I want to do is everything to make him better, bring him back to the kid I knew a few weeks ago.

Yesterday was a particularly rough day for him. Thankfully he sleeps in quite late but he woke with one of his bloody noses. I don't know why I walked into his room yesterday morning but when I did I found him leaned over the trash trying to stop a bloody nose that literally looked like water coming out of a faucet, only it was blood. A lot of blood. I sat down beside him while he rolled up some Kleenex to put in his nose as a plug to stop the bleeding and I rubbed his back. I said so many things to him but mostly just told him that I wished I could make all of this, all of the things he's having to go through go away. He sat there holding the trash can in his lap staring at a fixed point in front of him and he looked so mad. He gets in these zones where he seems to check out and go somewhere else in his mind and I sat there in silence with him for a while and then he asked me to leave him alone. I left him sitting there lost in his world with his trash can on his lap looking so beaten down.

He's completely lost his appetite lately too so I shored myself up to try to find a clever way to get food in to him. I could tell by his attitude that wasn't going to happen so I went outside to see my husband and I told him all that had gone on in the short time Thomas had been awake. We talked for a bit about how Thomas has been doing and we agreed that he was really struggling. My husband went in the house to use the bathroom and when he came out he peeked into the living room and very casually said to Thomas,

"Hey, there are 4 tacos left over from my dinner last night so if you want one of those you are welcome to them."

Thomas jumped on that and said that he would like one. I was overjoyed. So then I casually looked in the living room and asked him if I could pour him something to drink with that and he agreed. I went into the kitchen and took a chance trying to add something healthy to his meal he was building and I casually cut up a green apple and set it next to the taco I had taken from the fridge. He said nothing and took everything in to the living room to eat. Somehow, thanks to my husband, I got some nutrition into Thomas and I felt like I could breathe a sigh of relief.

As the day wore on Thomas seemed lost to me and he looked like hell. As work time for him was nearing I looked over at him and noticed that his hair was out of place. I went to him and asked him if I could fix that spot and he agreed and when I touched his hair it was so greasy and gross and I remembered that he hadn't showered in days. This has become a pattern again with him. Over a week ago he had started not showering and managed to get it together to shower for his visit with the psychiatrist but since then has not taken another one. In the car on the way to work I noticed that he didn't smell very good and I prayed his employers wouldn't notice. Also in the car he was filled with his now very typical anxiety that accompanies him being anywhere that he feels he needs to be on time to. He had taken an anti-anxiety pill and it wasn't touching the anxiety at all. He got out of the car at work and when I told him to have a good night at work he said that he would try to and he walked into the store with his posture that I've come to recognize as his "schizophrenic posture" where he walks hunched over and not moving his upper body and arms as he walked. It's such a striking way of walking because he just LOOKS like someone who isn't well.

When I picked him up at work he reported that his anxiety had been a 6 out of 10 and he said that he had been nauseated for most of his evening and he began to blame the nausea on the anti-anxiety pill. I explained to him that he had never had a problem with it causing anxiety in the past and that it was the anxiety itself that would cause the nausea and he argued with me that it was the pill. There he was, yet again, working on a new delusion. When things need an explanation that he doesn't have an immediate explanation for, he begins to make things up in order to make what is happening make sense. I know these are delusion formations because I've seen it happen a hundred times before and had to unwind them, most times without success. I needed him to continue to feel like the anti-anxiety pill is a positive thing because the alternative is something I just don't want to have happen. Without that pill, he won't be able to work at all, without that pill he won't get through difficult nights alone in his room when the walls are closing in, hallucinations rear their ugly head and he is scared to death.

It's funny, as I write this it might seem like nothing, all of this may not seem like something but as the day came to a close and I looked back on it all, all I could see was that Thomas is getting worse. He admits that he's getting worse, he says he doesn't think the clozaril is working and he's miserable with anxiety. My plan for the day is to call his psychiatrist and let him know what's going on. We aren't supposed to see him for 2 weeks and right now that seems like forever to me. Thomas can't go on like this much longer and I'm getting tired of picking up the pieces of my shattered heart.

Saturday, January 11, 2014

Another Day, Another Dollar

I've said it before and I'll say it again now and will say it a thousand times in the future and what that is is that I am very proud of Thomas. This young man is suffering terribly right now and I am amazed every single time he gets himself ready for work and goes. Perhaps the clozaril will be his saving grace some day but for now it's not doing a whole lot for him. He is on only 200mg which according to his new psychiatrist is not a therapeutic dose (300-450mg apparently is) and for the next 2 weeks at least his dosage will not change. Also according to the psychiatrist, clozaril can cause anxiety and may very well be the culprit of Thomas' exponentially increasing anxiety. What troubles me is that that darn anxiety fuels the paranoia and most likely (at least in the past) fuels his delusions but quite honestly I'm a little afraid to ask him where he is where his delusions are concerned. Selfishly right now I just cannot take another worsening symptom, not to mention I'm so tired of everyone being sick in one form or another around me so I'm only focusing on the anxiety and paranoia and trying to help Thomas cope with those two things.

Here's the deal. His anxiety about work, about getting there on time and about the paranoia that greets him at the door, is through the roof. He is now completely dependent on his anti-anxiety medication which, by the way, doesn't really touch his anxiety which is very sad. His anxiety about getting there on time starts a good 3-4 hours before he has to go and it ramps up from there. He even begs me to get him dinner by 3 or 4 when he doesn't even work till 6 because he doesn't think he has enough time to eat. I try to rationalize with him and tell him he has plenty of time and I beg, in return, for him to trust me to make sure he gets there on time and bless his heart he tries but fails every time. I have tried so hard to use my clout as a mom who's been there for him his entire life, to reassure him that I won't let him fall but even that doesn't hold weight for him anymore. So needless to say he's a wreck and getting worse.

Then at work those damn security cameras are increasing his paranoia exponentially also. As we drove the long drive home from his psychiatrist the other day I asked him how he felt about remaining at work and he sounded so beaten down about it but he insisted he wanted to keep working. I still refuse to force him to leave because he wants this for himself and a part of me wants to let him live his life as much as possible in case there comes a day when he can't anymore. I want him to be able to look back and say, "yeah, I worked and I made a paycheck and I built my own computer with the money I earned." So every night he goes to work and faces down those cameras and fights a valiant fight against their probing "eye."

Beyond work he is improving in that he is not sedated anymore. The slow titration on clozaril has made all the difference where that is concerned. He's still pretty much a zombie with little glimmers of the real Thomas every now and then but for the most part he's become a bit of a shell of his former self. His main complaint about the side effects has been the dizziness, headaches, constipation, and occasional drooling a lot at night. All in all, compared to starting the Geodon, I think he's doing good. Since we're waiting to see what the psychiatrist does with his dose in 2 weeks, at least he won't have to deal with more sedation in the mean time. That anxiety though, there has GOT to be something for that.

So as I said, I am very proud of Thomas. Schizophrenia and anxiety are kicking his butt right now and somehow he's finding the strength to go on fighting it. I have had crippling anxiety myself in the past and I finally gave in to it so each day Thomas fights through it to the end, I consider him my hero. I worry about how the anxiety will cement the delusions and paranoia but we can only work with what we have and right now that's some lorazepam, bravery, prayers and immeasurable strength on his part.

Friday, January 10, 2014

The New Psychiatrist

Thomas saw his new psychiatrist yesterday. This is good, this is so good that he has this new psychiatrist to follow his meds. He has agreed to take Thomas on as a patient which gave me some peace of mind and Thomas likes him. Without my asking he even told me that he was going to call down to the pharmacy and let them know he was taking over prescribing the clozaril and he said he'd call the lab and tell them he was the one ordering the blood tests now. I loved his assertiveness as far as that went but that assertiveness began and ended right there.

Now, I liked the guy too. He's young, probably my age and he has an accent. After a little digging I discovered that he's from Brazil so that makes things interesting to me. He went to school there but did his residency here in the states. I very curious what his education taught him. His reputation preceded him in that I knew he does ECT and I was left with the impression that he liked to prescribe cocktails of medications. He mentioned neither of those things, in fact, he's taking meds away from Thomas and he's not touching the clozaril dose even though he admits that Thomas is nowhere near at a therapeutic level. I'm baffled. I guess I went in there thinking this guy was going to wave his magic wand and meds of all shapes and sizes were going to rain down on us but that didn't happen. The opposite did. So, right now I am still trying to process the whole visit. Why take a young man who is obviously psychotic and under-treated and take away one of his meds and do nothing with the dose of the "last resort" med that he so desperately needs? Remember? He is on this med because he's treatment resistant and was close to hospitalization, for God's sake he is psychotic and we're leaving him on an extremely less than optimal dose of the one medication with promise in it's tiny pill to make my son better.

Needless to say I am needing to process what's going on and I need, now, to keep an eye on Thomas since he's so under-medicated and is suffering terribly right now. Oh yeah, I forgot to tell you. This immense anxiety, the crippling anxiety that keeps Thomas from being able to go to or if he goes he cannot stay at work, according to the new psychiatrist, the clozaril causes that anxiety. So, ok, is clozaril even the right choice for him and if the drug of "last resort" doesn't work for him, then what? THEN WHAT???

Well, so, there it is. We see him in 2 weeks so we'll see what happens then. I'm shaking my head and extremely curious what the plan is here. In the meantime, I'm going to keep an eye on Thomas. I feel terrible for him and how much he's suffering. There must be some help for him out there somewhere.

Thursday, January 09, 2014

Family Therapy

Well, we did it, we survived family therapy. I'm still trying to decide if family therapy is healthy especially when we walk away from it feeling worse than when we went in.

It started well enough, a typical session where we went through what Thomas was feeling (paranoia still there, delusions still fixed, increased hallucinations but no depression or anxiety). I was happy that my husband was there to hear these things because I felt like it was a safe space for Thomas to be honest about his feelings without getting attacked like my husband has a tendency to do to him.

Then the fun began. My husband got to be heard. Don't get me wrong, the point of therapy is to be heard and a part of me was happy for him to be able to tell a professional how he feels but so many of the things that he said were the things we argue over all the time. That of course left me wanting to, yet again, defend myself and Thomas and I did just that. I am frustrated because the world my husband sees just isn't the world that it is where Thomas is concerned and where my relationship with Thomas is concerned. He works a lot and when he's off he's not around very often so he's so quick to say that I over-mother Thomas. I have heard this my whole marriage and have worked extremely hard to curtail that in myself and I am proud of the mom I have become as a result. There's no doubt that I used to consider myself one of those dreaded "helicopter parents" but I am not that person anymore. Yes, I'll admit, I am very watchful over Thomas but I am just not the person that my husband claimed to Thomas' therapist that I am. With or without therapy, I believe that will always be an argument of ours and I will go to my grave defending Thomas and our relationship.

One important thing that did come out is that the therapist believes my husband and I need to carve out some time for ourselves, without Thomas, even if it's just a dinner out alone or even better, an overnight trip to the city. I wholeheartedly agree with this line of thinking and want the same for us but when the therapist asked Thomas how he would feel about us leaving him home for a night he readily admitted he would be terrified. This type of thing from Thomas is exactly what keeps me here with him a lot of the time and somewhat unwilling to leave. What was more heartbreaking was as the therapist worked to paint a picture of normalcy for our marriage it became even more evident how not normal it is. Thomas' therapist asked Thomas if he would be ok if his best friend came to stay with him that night we were gone and he stated that he would still be scared. I know that kind of thing happens all the time in the real world. Two teenage boys normally practically beg to be left alone so that they have time to be teenagers and raise some hell but that is just not meant to be for Thomas. His normal, our normal, just isn't in the cards for us. Ultimately my husband and I promised ourselves that we would at least go out for dinner together sometime soon.

One thing that we did take away was the good doctor's diagnosis of our family's individual diagnoses. Thomas, of course, has schizophrenia, I have anxiety and bipolar II, and my husband is depressed. Of course we're all suffering from mental illness. It's what my family does and that fact causes me great humor no end. As a side note, I stood outside and talked to my new neighbor the other day and she went on and on about the guy that used to live there and how mentally ill he was. She said it with such venom in her voice grouping all mentally ill people into this box to be kicked to the curb. I had to laugh as my sullen, expressionless, schizophrenic kid came out of the house in the middle of that conversation to tell me that the meat on the counter was thawed. For as much as this new neighbor hated this mentally ill tenant that used to live in the house, she would be shocked to hear she has a gen-u-ine, vilified, violent, sick, scary schizophrenic living next door to her (read sarcasm here). I didn't say anything, of course, but people like that, who are closed-minded, crack me up because they are so shut off from the truth and a willingness to learn the truth that they live in such a narrow, and in my opinion, sad world.

So all in all I guess family therapy went well. None of us hate each other but old and current wounds were opened up raw and the dynamics of our family lay bare for a professional to see. We survived, Thomas was the most unscathed, and hopefully we will make some changes in the near future to better our marriage and family.

Wednesday, January 08, 2014

Thomas' Song

Yesterday Thomas got in the car with me to go to the bank and he put this song on repeat. I wiped away tears as I listened to it and prayed he wouldn't look over at me. He says that this song is about him.

------------------------
"World Behind My Wall"...

It's raining today
The blinds are shut
It's always the same
I tried all the games that they play
But they made me insane
Life on TV
It's random
It means nothing to me
I'm writing down
What I cannot see
Wanna wake up in a dream

[Chorus:]
Oh
They're telling me
It's beautiful
I believe them
But will I ever know
The world behind my wall
Oh
The sun will shine
Like never before
One day I will be
Ready to go
See the world behind my wall

Trains in the sky
Are travelling
Through fragments of time
They're taking me to parts
Of my mind
That no one can find

[Hook:]
I'm ready to fall
I'm ready to crawl
On my knees to know it all
I'm ready to heal
I'm ready to feel

[Chorus]

See the world behind my wall
See the World behind my wall
See the world behind my wall

[Hook]

Take me there
Take me there
Take me there
-------------------------------------

Tuesday, January 07, 2014

Wait And See

It has been a rough few days lately so I have been away from here. It seems I just don't have the energy left right now to manage too many things. I know that you have been wondering how Thomas is so I wanted to share a little about him with you.

As the days have passed he has improved some as far as his mood and what I attribute it to and that is the clozaril. We had a couple days there where he was being downright rude to me and was barely talking to me. It came to the point where anything that came out of my mouth about any topic elicited a negative reaction in him and I realized I was watching my son turn into the kid in two of his hospitalizations where he hated me and hated the world. The truth is, there came a point that I decided that I wasn't going to take it anymore from him and after weighing how much of his attitude was medication/schizophrenia related and how much was just a bad mood, I confronted him and told him that he can feel rotten and I understand that because of the meds changes but he just can't be rude to me anymore. Since then he has been more patient with me and has started opening up about what he's feeling again.

He seems to take his worst symptoms in stride yet they are the ones that are most disturbing to me. His vacant expressions, his flat affect and his lack of words for anything seem to go right over his head, at least as far as reporting that they are uncomfortable to him. It is those signs that break my heart the most. I hate seeing his spirit disappear. Physically the side effects of clozaril aren't as bad as I thought they would be, including the sedation, but he's quite disturbed by one in particular. When he stands up too quickly he gets dizzy and has to steady himself before he moves. The only warning sign on the side of the prescription bottle is a big blue sticker that says, "may cause dizziness" so that side effect doesn't worry me. At least not until it changed. Now when he gets up he gets the dizziness but then also gets a flash headache that stops him in his tracks and causes him to grab his head. They are extremely painful to him and they scare me to death. He says the worst of the pain passes within seconds but then he's left with a dull headache for a while afterwards. I worry that he's going to have a stroke though I'm fairly certain my worry about that is grounded in the symptoms of my dad's stroke when he had it.

We are quickly nearing the first appointment with Thomas' new psychiatrist which will be this Thursday and I am so nervous about what this man is going to want to do to help Thomas. He is known around the area as being someone who uses a cocktail of medications for schizophrenia so I'm guessing he might do that with Thomas. More upsetting than that is a couple of paragraphs in the copious paperwork I received to fill out for that first appointment that talk about how he sometimes uses ECT (electro-convulsive therapy) for psychosis and depression. Apart from writing this here now, I have shoved that very quickly to the back of my mind because I just can't face that that might be put on the table as an option. I am of the mind that if a person chooses to do that then I support it but when it's my own child, it scares me to death. I am not going to dwell on that though until we meet with the guy and see what he thinks about how Thomas is.

Beyond Thomas, my dad is doing horribly. For the sake of saving space I won't say much about that now but it has taken it's toll on me emotionally and physically. The slow, excruciating death of my dad's essence is painful to watch and I have been breaking down in tears a lot lately in random places as reality hits me about the fact that I may lose him soon. Between him and Thomas it has been so hard.

So, there you have it, a summary of life lately. Tomorrow is family therapy (which is causing my husband great anxiety as he has never been in therapy before) and I think the goal of that is to have one of THOSE talks about the truth about what to expect with Thomas in the future. Like my husband, I am anxious about the appointment but not for the same reasons. Nothing good ever comes of meetings with the therapist as a family in that historically they, more often than not, hold bad news. As in all things lately, we will have to wait and see. Life lately is a lot about "waiting and seeing" and I am at the point now where I want just to "see" and knock off all of this waiting around stuff. I want some answers.

Sunday, January 05, 2014

The Jingling of the Tag (A Poem)

He is lost inside himself
his brain is dead he says.
His life's become an empty void
his zest for life is gone.

We took a drive at his request
to find a place of peace
We rode along in silence, music our company
but underneath the 40's tunes I heard a jingling.

With each silent moment with each bump we hit
the sound grew louder in my mind.
And there it was the reminder of
the reason we were on that drive.

The dog tag that I had bought for him
worn around his neck with words of truth etched in.
I thought about the reason it was there
and felt the pain creep in.

His silence in the car, his expressionless face
his anxiety that could not be reigned in.
I wanted to forget for just a moment
but the jingling wouldn't let me.

Schizophrenia robbed my son and I
of a life we'd dreamed for him.
The meds to treat it, the side effects
are too much for him to bear.

A sunny day along the river
a silent ride for peace.
An attempt to run from insidious illness
was futile in it's plan.

We rode along in silence with the jingling of the tag
the glaring cruel reminder
that escape from this monster is impossible.
My son is a shell, he's lost inside and I miss him terribly.

by Melanie Jimenez

Friday, January 03, 2014

Tomorrow's A New Day

It's funny, after yesterday's optimistic post you would think I would have been able to hang onto some of that hope. It's not that I've lost it but while I was writing it I thought I felt like I was so excited for the future. Yesterday made that a little harder for me as the day wore on after Thomas woke up.

For one thing he slept about 13 hours which I was happy about. I was careful to keep the house quiet so that he would sleep. I know that the clozaril is causing him sedation but it also appears to be causing something else that I just can't put my finger on. I hate when that happens because I always try to find words for my feelings and try to figure out what the people around me are feeling but I had no words for what Thomas was feeling. If I had to guess, I would say it's a cross between anger and depression but I don't know. He reported that he was "fine" yesterday but nothing about him seemed fine to me. He was rude to me (which is fine but out of character) and he was distant, barely speaking to me in the car on the way to therapy and then over to the pharmacy. Usually he accompanies me in to places especially when it's dark outside but he chose to remain in the car while I went into the pharmacy. He appears lost somewhere else right now and I'm hating it.

I know it's way to early to even say this but to me, it appears that the clozaril is making him worse. I don't know if it's that he's titrating off of the Geodon and going up on the clozaril and that's some kind of perfect storm or what? I keep telling myself that I've been through meds changes before and that I should be used to everything by now but I can't get myself to be used to this. I'm in a scary place too because Chad is gone and Thomas' new doctor isn't available until next Thursday at 1pm. I suppose I could call over to Chad's old office (there are other PNP's there) and let them know what's going on but I don't even know what I would say. Nobody but Chad and Thomas' therapist knows our "language" so if I say he's "off" they aren't going to see that as important, I don't think. We'll see how Thomas wakes up today.

By the end of the day yesterday, after working like crazy not to trigger what ever is lying underneath Thomas' outer mood, I went to bed early and told myself that "tomorrow is a new day." It's all I had to cling to but I'm painfully aware how often I say that to myself and when tomorrow comes it's not much better. I hope that yesterday was a fluke and that I'll get an improved, fresh-faced Thomas when he wakes up this morning. As I wrote that last sentence I remembered that he works tonight. That is a guarantee that he's not going to be in a good mood again.

Terrific.

In therapy yesterday Thomas reported that he still had his paranoia but what caught my attention was that on a scale of 1-10 he rated his feeling of being trapped a 5. That's high for him especially since he's reported that at a 0 for a while now. In the car after therapy I told him that if he's feeling like that at any time to let me know and I'll get him out of the house or take him wherever he wants to go. He got all weird and stuttery saying that that wasn't what he meant about feeling trapped and then he said, "Oh never mind." and I knew to leave it alone. He does this thing that I consider a form of delusional thinking where even the tiniest things are met with a flash of anger. It's hard to put into words but it's like he wants his world a certain way and any step outside of that makes him mad. One of the best examples I have right now is that he's clearly sleepy and I caught him drifting off to sleep the other day and when he woke up I told him that he should just lay down for a little bit and get some rest and he blew up at me and said,

"I'M NOT SLEEPING!!! I'M NOT TIRED!!"

So I left it alone like I'm leaving everything else alone right now because that's what I'm up against.

Hopefully as I write this this morning that I am merely reliving a bad day yesterday and that all of this anguish will be for nothing and that my wish that "tomorrow's a new day" will have been enough to make today better. I guess I'll find out in a few hours but in the meantime I'm going to pray that he wakes up feeling better. My gut tells me he won't be though.

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