Saturday, August 30, 2014

Back In The Game

I wasn't going to do a blog post today but something happened yesterday that it totally worthy of a post. I got a call yesterday that changed everything having to do with applying for and appealing Thomas's SSI.

My phone rang and I looked on the caller I.D. and saw that it was from his disability advocates, you know, the ones who seem to have abandoned us? I ignored the call and waited for the voicemail to roll in. I was mad just waiting after all, what, really, had they done for us in this whole process?

Well the message was one of hope so I called her back. Here is what she told me:

The girl, Kim, who was handling my case had kept terrible notes so the lady I was now talking to, Jess Anne, said that they were trying to sort through what Kim had been doing with her cases. I told her how someone had told me that they couldn't help me file the appeal and she was so mad at whoever told me that and very apologetic to me. It turns out that they WERE supposed to help me with that but Kim had just written us off. Guess what? Kim had been fired for being a horrible employee, along with her supervisor, and now the new hires were trying to sort out the mess Kim left behind. Jess Anne went on to tell me that not only were they supposed to help me with the appeal but there was a whole laundry list of things they should have been doing for us. Get this, all of these things I needed them for, I didn't know they existed therefore would never have gotten them turned in to Social Security.

So she asked me if after everything if I still wanted them to represent us and I told her if they were going to do their jobs that I would love their help so we discussed what had to be done next.

The first thing, which will happen next Thursday, is having Thomas do an ADL (activities of daily living). This is the first I have heard of this. So, this form, of course, asks about his activities during the day but it goes several steps further and asks things like, "Does he need to be prompted to do chores?" among other little detailed things like that that I didn't know they used to determine if Thomas has a disability. After going through a couple of questions with her I realized just how "disabled" Thomas is. All of the things his dad and I take for granted, that either we have to ask him to do or that we do because he doesn't do them, are things that help determine a disability. Without this call from Jess Anne, I would never have known about it.

The other thing she brought up was an R __ __ form which I can't remember what it was called but it's a form that they send to Thomas's therapist for him to fill out that talks about his limitations at home and at work and asks for his personal, or rather professional, opinion on Thomas's life skills. Again, another form I would never have thought to send. I didn't even know it existed.

Beyond that there are other things they are going to pick up. She did assure me that Thomas would be paid back to 4 months after his disability was determined which would be October of 2012. I had been told by Social Security when we filed the appeal that they were opening the case back to July 7th. I thought the back pay that Thomas would get would only go back to then but that is not the case.

So, all is well now with our advocates. They cleaned house and they are in control again and I am happily handing it all back over to them. I am actually excited again about the disability process which, yes, is easy to do since I now no longer have to do the run-around work that was ahead of me. Luckily Jess Anne called me and to her credit she let me complain a lot about Kim and how their company had abandoned Thomas and I. She was very apologetic and promised better service from this point forward.

We're back on track. Now, Social Security just needs to approve Thomas. Only time will tell.

Thursday, August 28, 2014

A Ride In A Time Machine

Well, here we go again. I know Thomas would tell me it's nothing at all but my "spidey sense" tells me something's up. It seems we are going back in time again to a much simpler age--or was it? I suppose it could be because of what the era brings to Thomas.

It is the 1940's right now in my house. WWII is happening, the catchphrases are cute, the music is jolly and simple in its message and it all seems to have grabbed Thomas in a bigger way than before. You see, he's been here before. He'll get in the car and tune the XM radio to 40's on 4 and a different era of music fills the car. He says it relaxes him. That's good and I'll listen to that infernal music until I'm blue in the face--it's not my favorite, in fact it really bugs me-- but I'll listen to it because it makes him happy. Somehow, though, it and the era have captured him yet again.

On Tuesday he came to me with a new drawing. I love how this happens because it's like a present to me. He comes in to the living room and asks,

"I have a new drawing, do you want to see it?"

Of course I do!! He's drawing, he's expressing himself through art, of course I want to see what he's come up with. When he handed it to me it took me a second to process. Written across the picture of a man in a suit was something in a strange font. I studied it and finally it came in to focus. It said, "40's Man". It was written like he's a superhero and instantly I loved him as Thomas explained to me how he had done research and found how the suits were styled back then so he could draw an authentic suit on his character. Above the man's head was a saying, something like "don't pop a cap......" I don't remember the rest but it was obviously some slang saying from the 40's. That, too, he had researched and added to his drawing. Well, 40's Man was immediately scanned and put up on all of his social media. Thomas is very proud of him. With 40's Man, though, has come a couple other things that puzzle me a bit.

Now, I have no complaints about the fact that he listens to that era of music, it's not that, it's that he is now sitting in front of the computer staring at a screen with what looks to me like a Pandora Radio screen only it's not Pandora, it's something else. Anyway, he's just staring at this screen and wearing his headphones. I couldn't just let it go because it was odd. His screen is always filled with YouTube garbage so this new thing is odd. It turns out, it's a 40's music radio station and he's mesmerized. Go figure. Again, all of this is fine, I have zero complaints because anything's better than that obnoxious "devil music" I hate for him to fill his head with.

Then, and this is the most puzzling of all, there is his lopsided, a now almost permanent smile, on his face like he's heard a joke and he's the only one who heard the punch line and he's amused. I asked him probably 3 times yesterday what was so funny and all he tells me is that he "heard something funny."

Huh.

"Heard something funny."

Where exactly? Which I don't ask him and I don't push for details. So he hears something funny, well, if he's going to hear something then something funny is the best thing to hear. But what the heck is SO FUNNY?!?!? In actuality the whole thing makes me smile too. I tell my husband "he's doing it again" and I laugh a little bit. It's cute! And I love it, but I'd sure like to know exactly where he's hearing the funny thing from.

So here he is again, caught in the 40's. WWII is going on, the catchphrases are cute, the music is jolly and simple in its message and something there in this new world of his is endlessly funny. I love my new Thomas, my "40's Man". Anything that makes him smile makes me smile and with him, I am happy to jump into the time machine and travel back in time.

Wednesday, August 27, 2014

"I Have Nothing To Hide"

I mentioned this yesterday but I will again just for context. I was asked by a national online news magazine to write an article for them. My choice was to chronicle Thomas' life from his birth to current times. I worked hard on that article and told the whole story leaving a few details out to protect Thomas. I do that here on my page even because I think that some things people just don't need to know. Thomas knows that I write here and he chooses not to read it so I haven't ever really TRULY known how he feels about it. My one concern hasn't been how I portray Thomas rather I think it would be hard for him to read the pain that I go through sometimes trying to deal with what he's going through. I have offered him countless chances to read this blog and always he refuses. So what does that have to do with the current article I am writing?

Yesterday I got my first draft back from the editor. I read through everything and it became more and more apparent that she wanted details put in that I had deliberately left out in order to protect Thomas. My heart sank a little bit because I was nervous to go to Thomas and ask him how he felt about me adding in details about things that, to me, seem deeply personal. One such thing was his experience with his first psychotic break. I more or less talked about it from my point of view but left out the ways in which he coped for the days afterwards because the things that he did, to me, were sad and showed how very terrified he was at the time. I just didn't think it was right to reveal those fear of his.

So, I gathered my courage and I went in to his room and I asked him to come sit with me in the living room. I told him I needed to talk to him about something. I explained to him that I was writing this article, I explained generally what it was about and I asked him what he thought about me writing it. He really didn't care all that much. I asked him to sit with me and comb through the article and its edits and help me decide what I could put in where and what I should leave out.

I asked him about the time that I discovered he had been pulling out his hair. I asked him if I could talk about it in more detail. His response?

"Yeah! That's fine!"

Then I asked him if I could talk about his first psychotic break and explain to everyone what I saw during that time that were behaviors of his. He said,

"Yeah! That's ok with me!"

Then I asked him if I could talk about other things and each question I asked him his response was a resounding "Yeah!" I was surprised. VERY surprised.

So I sat with him and explained to him that he really needed to think this through as far as what the general public would think. I told him that the overwhelming majority of people would be extremely supportive but that there might be some people who will have nasty things to say and might even make fun of him. I explained to him what happened to another mother and son with schizophrenia who did an article for the Washington Post and how they got such amazing support but that they also were attacked for the choices they made about his life and his mental healthcare. Thomas seemed completely unfazed.

I stopped and studied him for a minute and then I asked him,

"Why are you okay with me telling so many details about your life?"

He shrugged his shoulders and said,

"Because I have nothing to hide!!"

Nothing, I thought. Really? I asked him how he would feel if for some reason a friend of his read the article and came to him and made fun of him and he said,

"Mom, my friends already know. And remember I told you before that Cole and Patrick have always understood and supported me. Remember, mom, what I told you? Remember the times I thought I was hallucinating and they checked for me and let me know what they saw? Mom, they're supportive of me and I don't mind if they know this other stuff."

I had forgotten that and I could see that he had a strength in him about this whole article thing that I'm doing.

I

was

in

awe.

I was in awe of this kid who has been terrified so many times in his young adult life and he was being beyond brave now and allowing me to write openly, more so than I have done here, about his life and his feelings.

Then the final big question came. The editor asked me if I could interview Thomas and let him make some of his own comments in this article. This is where, to me, it became more beautiful than I ever thought possible. I asked Thomas that, if he would mind being interviewed, and he beamed from ear to ear and said he would like that. I was overjoyed. I told him how good it was that he wanted to do that and I told him that he would get to have a voice in the big deal article too.

He would get to have a voice!!

So, there it is. Right out there naked in the wind (sorry for the graphic thought). The thing is, that is exactly where we'll be though. We are going to lay our lives bare for all the world to see and we're going to do it together and face whatever comes our direction, together. My boy, my young man, is an amazing, strong, candid, big hearted kid and our future looks amazing. A mom and her son, fighting schizophrenia and it's ravages on each of us, will do this, and as it has always been from the time he was put in my arms for the first time, we will do this together. He will have a voice and most importantly he "has nothing to hide."

Tuesday, August 26, 2014

Who Do You See?

I was just recently offered a chance to write for a national online news magazine. I was ecstatic to be able to do it. I sat yesterday and proceeded to write Thomas' story and mine since he was born. Each story was attached to a photograph in my mind of the moments of his childhood and youth. It was, needless to say, in many ways, a difficult journey to take. From seeing my baby boy in my arms after him being born to him playing with his Thomas The Tank Engine trains, to flying kites on the beach, to now the moments that pointed toward some indicator that he was getting sick. I know I have said this before but there did come a point when I watched Thomas disappear. He grew out his hair pretty long, he grew a mustache and beard, he had dark circles around dark haunted eyes and the clothes he wore became strange ensembles of solid white head to toe. Time was passing by and I was watching as he disappeared.

Since then he has gotten his hair cut short, he will still only wear certain clothes, his eyes are still haunted but tired now from the anti-psychotic sedation and a smile out of him is a rare anomaly most often only coming when he laughs to himself in random moments where no outside stimuli warrant such a reaction.

I write his life story and I remember my boy from the ages of birth to 12 and I see an average (but unique--after all he is my special one) kid and then suddenly...the change into someone I don't recognize.

What happened?

I often ask myself, "who do you see?"

Well, I see Thomas, I see my son who stands before me each night and asks for a hug. The thing is, though, I see schizophrenia too. Now I'm the first to say, "you are not your label" and I do not mean that Thomas is his label however who I see most times is akin to a bullet riddled body, a young man with holes punched through him by schizophrenia's unrelenting march to consume what is left of the boy I once knew. Who I see is a kid who rarely hangs out with friends, who is glued to his computer, who just downloaded a video game he loved as a 4 year old child and is playing it even though he is 19, I see a kid who switches from one love of something to another love of something, to adamant distaste for another something then to nothing at all, just a kid sitting on the front porch listening to music and staring at the neighborhood. Who I see is a stranger to me in many ways even though I know with every fiber of my being that he is my son and I love him.

The thing is, I think all of us here have lost our loved ones. I think we all asked "who do I see?" pretty often and I think coming to terms with the "familiar stranger" in our home will be something we will never get used to.

I write Thomas' life story for a magazine and I miss him terribly. Inside, though, I feel blessed that I have him still, that his essence remains, sometimes buried, but I have him.

Monday, August 25, 2014

Who Or What Is Taking Him Away From Me?

I often wonder about Thomas and what goes on in that mind of his. When he comes out of his room with his mp3 player and headphones on and just stands at the end of the couch (which is weird) or some other thing about him changes for a day or two after months and years of things being EXACTLY THE SAME WAY only to return to the old way a day or even hours later, I really wonder what is going on in that head of is. I am most plagued by one thing in particular and I have seen it a lot lately and he hasn't been like this for a while but he's been this way again recently.

He's now back to glazing over and checking out of conversations. I don't know what it is but it appears he is responding to something else in his environment including, perhaps, in his head. I wonder about what he "hears" inside of him, what thoughts are going through his head. I watch this drift off into Neverland and I try to make eye contact with him and he's literally like a blank slate. Where is he? What is he thinking?

I liken it to something I watch occur in another family member with D.I.D. (multiple personality disorder) who will often drift away like that before turning into someone else entirely or who will drift away and I'll feel like I'm shouting down a dark hole trying to get their attention.

Now, I'm not saying Thomas has multiple personalities, in fact, I see just one kid in him and that is his usual flat self. What I do see though is someone disappearing somewhere down a similar dark hole and no amount of the usual ways to get his attention works. So what is it? Does he hear voices or sounds that aren't there? Is there another person standing there behind me that isn't really there? Or is he just drifting away, zoning out, bored with what people are saying?

Most recently I watched this happen in Dr. N.'s office. I had the luxury, if you will, of being able to be a casual observer instead of the one a part of the phenomenon. I watched as Thomas went from being engaged in the conversation to just nodding v-e-r-y slowly and his expression glazing over to a flat expression and no response to what Dr. N. was saying. Now, it wasn't like Dr. N. was saying anything that might be above Thomas' head that he might not understand, in fact Thomas had been fully engaged just a minute before and then suddenly,

poof!!

he was gone. The thing is, if you look at him, he is obviously SOMEWHERE...but where?!?!?
In the past I have asked him where he was and he brushes it off or he does rarely admit to something like a voice taking his attention away but since he's been doing better with the new increased clozaril, I have been wondering who or what, if anything, is taking him away from me. He said last night on the drive home from work that he is doing good but can I believe that? I mean, really? Can I?

Friday, August 22, 2014

Number 88

After three weeks of gathering pertinent information together to argue Thomas' case with SSI to get it reopened, Thomas and I finally went to the Social Security office yesterday to turn it in. We walked in and immediately stopped. The reasonably small waiting room was completely filled with people. All of the seats were taken and there were people standing everywhere in every corner and down the hallway. I thought to myself and commented to Thomas, "This is going to take a while, brace yourself."

Our number was 88 and they were on 72 so we settled in for a long wait. Thomas managed to find us some chairs way down the hallway but he and I began to get nervous that they'd call our number and we'd miss it and have to start all over again. Poor Thomas couldn't sit still in our little corner of Social Security. He wouldn't even play games or check his social media on his phone so I knew he was stressing out. He kept getting up to check the numbers and finally, after about a half an hour, he found us 2 chairs out in the waiting room.

We sat there for another hour and a half and I felt horrible for Thomas. He'd shift from sitting with his elbows on his knees and his head in his hands to sitting bolt upright and resting his head on the wall behind him. I was playing slot machines on my phone so I could have sat there forever but I was painfully aware of Thomas' unrest.

After an excruciating (for Thomas) hour and a half our blessed number 88 was called. We went up to the window and I began my spiel as I unloaded my folder of it's contents which included the application to reopen his case and all of the receipts and his bank statement that I had collected. I knew how overworked and frustrated the Social Security lady was so I wanted to be on my game so she wouldn't have to riddle me with questions and fight with my lack of knowledge about what I was requesting. She had been doing that with people for the last hour and a half and I wanted to be THE ONE who got it right.

After laying everything out and finishing up my speech, she asked just one question then took everything to the back where some mystery person sits and makes the valuable determination on our case that we needed. I wanted so badly to see this mystery person just so I could make eye contact and show her/him my desire to get his case reopened but instead we stood at the window and waited for about 4 minutes.

When our lady came back, she handed me all of the things that I had given her and my heart fell before she ever got a word out. She proceeded to tell me that she took copies of everything and that she was returning my originals. I held my breath. Then...then she said,

"Okay, we have enough information and we will be reopening Thomas' case back to July 7th."

We did it!!! Yay!!!

So we put everything back in the folder and walked out of the building. I was overjoyed!!

So, Thomas' case is reopened and now we wait the 60-90 days she told us it would take. There hadn't been a medical determination made on his case and the lady was surprised we had been rejected so soon so I got the feeling that if we could get through the medical determination that we would be on our way.

I know. It's not going to be easy and there's a chance we'll be denied again but for right now I have hope.

It was totally worth being number 88 and waiting 2 hours in a cramped waiting room.

Thursday, August 21, 2014

A More Proactive and Thoughtful Thomas

A somewhat perplexing thing happened at Thomas' meds appointment on Thursday. When it was my turn to come in, I talked about how good Thomas has been doing since the clozaril increase. All of the delusional thinking and work-related depression had just about disappeared. But in the car on the way up to Dr. N.'s I asked Thomas again (we had discussed this a lot lately) if he wanted to take another antidepressant. He readily agreed that he did and we went back to listening to music.

When the session was wrapping up, I was asked if I had anything else to say and since Thomas forgets things, I brought up a couple of things including the anti-depressant. Dr. N. asked Thomas if he wanted to try out a new one and Thomas said yes. So, Dr. N. rattled off a couple of names of meds one of which I didn't recognize. The option both Thomas and I recognized was Cymbalta and Dr. N. was choosing it because it had energizing properties. We sat in that room and batted around thoughts about deciding to go on another anti-depressant (Thomas is already on Wellbutrin). Here are the issues.

-Adding more Wellbutrin is known to cause more paranoia so that's probably not an option

-Adding Cymbalta seems like a good plan but the "energizing properties" worried me a bit because Thomas is finally getting decent sleep for the first time since his clozaril was lowered a few weeks ago and I was concerned that it would interrupt his sleep.

--If we're going to add Cymbalta then do we take the Wellbutrin away immediately or do we get the Cymbalta rolling pretty good and then remove the Wellbutrin?

--If we add the Cymbalta and try to remove the Wellbutrin and Thomas gets more depressed then do we keep both of them in the mix?

--If we do decide to keep them in the mix then that means that Thomas will be on 5 medications and we all agree that seems like a lot of meds to be on. Then again, if it takes 5 meds to keep Thomas stable then perhaps 5 meds are what we should stick with.

There were so many thoughts and questions and finally Dr. N. dumped it in Thomas' lap. He asked Thomas what he thought and he seemed really unsure. I think all of our debating scared him. So, Dr. N. asked him if he wanted to wait to try them and read about the Cymbalta first and shock of all shocks, because this has NEVER happened before, Thomas said that he did, indeed, want to read about it first and then make his decision.

Huh.

Okay.....

It's not that I don't think he should do exactly what he's choosing to do, it's just that he's actually choosing to be so proactive. To me, this is a good sign.

I think.

Well, I'm going to choose to see it that way.

It's funny how as a caregiver of someone living with this illness your brain gets used to taking something seemingly small and running with it in 20 different directions. One of my thoughts was, is he wanting to read about it first to make sure it doesn't poison him? I know, I'm sounding like a crazy person because what normal person would go to that place (or the many others that I went to) but this is what I'm talking about. Thomas' mind is a labyrinth and each turn of a corner in it, from the outside looking in, is a strange journey and after a while my mind gets used to that and proceeds to concoct all sorts of scenarios.

At any rate, when all is said and done, if things are exactly what they appear to be, then I am thrilled that Thomas is being so proactive about choosing and reading about his meds. In the past I have handed him the information that the pharmacy gives with each of his pills and he has refused to read them so this turn of events is a good thing in my opinion. I wonder what he'll end up choosing. Personally I'm not entirely sure he needs another anti-depressant but that's not my decision to make. I am proud, though, that it appears that Thomas really cares about his body and his mental health.

This is a good sign.

Wednesday, August 20, 2014

It's Fading. Thank You Clozaril (Who I Used To Hate)

I am getting a late start today writing because I wanted to read through the comments from the last couple of days. I want to say thank you all for your support and for "showing your faces" here so I know that my audience is out there. I am honestly so honored to have gotten the responses and support from you all that I did. It means the world to me. I know that one person's opinion shouldn't shape a person's actions but this person did make me think and while it was easy to brush off her comments, it made me think about the rest of you and how I might be affecting you with what I write. With all of your support now--having read it all over--I am going to forge ahead and keep writing just like I always do. I have only ever had a few sporadic doubts about what I am doing here in the past but they didn't stick around and I chose to believe that this blog is making a difference.

Now, on to the whole entire purpose of my postings. My young man Thomas.

Yesterday was medication day so that entailed a 50 minute drive to see Dr. N. On the way up there Thomas played D.J. with his music and I got an earful as usual. I really do consider his choices in music an indicator of who he feels he is at the time and what he's feeling. Over all the music was fun with only a couple angry ones thrown in. I really have to bite my tongue a lot of times with his music (especially driving back yesterday when the tone changed to screeching, angry music) because, like yesterday, I was a bit stressed and someone screaming anger in my ear does not help my stress level at all.

Anyway, back to our drive up there. I tried to have a talk with him about a few things. He was very moody and closed off. Usually our drives are time for us to talk and for me to see if I can learn anything about how he's feeling but yesterday it was like pulling teeth though in the end I got the best news of all. I managed though, not intentionally, to come up with questions in the middle of his songs and I'd ask them and he'd begrudgingly turn off his music, look out the window and simmer. He did answer my questions though.

I won't drag you through the whole conversation in that 50 minute drive but what I do want to share with you is what has transpired for him and his feelings about work. He told me that his strong feelings of wanting to quit had faded and he felt that he no longer wanted to look for a new job. Ever the "Pollyanna" (this annoying character from a movie---she always looks for the good things in life) I said to him:

"Being at work should be a lot of fun in the coming months because the holiday season is coming and you'll be surrounded by all of the festive decorations." I said, "It's a lot more fun to drive up to a store with giant inflatable Santa's bopping around in the window than it is lawn chairs and BBQ grills."

He smiled and agreed and said he was very much looking forward to the Fall and Winter. He has a real attachment to those seasons and I have only been able to discover that the reason for that is that he likes the cooler weather. I think that it's also because he gets to be a bit of a kid again by handing out candy at Halloween and being the center of attention and tons of presents to open at Christmas.

The take-away from the whole conversation is that I have a new and improved and finally mellowed Thomas on my hands concerning his job. He realizes the value of the flexibility he is afforded at his job and recognizes that most jobs wouldn't allow him to leave in the middle of the shift because of medication side effects or panic attacks.

So I sat back last night and I breathed a sigh of relief and one of confidence that I had been right about the lowering of the clozaril being the culprit for his newfound "depression" and anger about work and his over the top desire to leave home for good. It's such vindication to know that I am recognizing this beast that is schizophrenia and how it manifests in Thomas and while I'm not a doctor, obviously, I do have a handle on what works to keep him stable.

His hatred of work is fading, his desire to leave home is fading and best of all he is mellowing out. Thank you clozaril (who I used to hate). You are my friend now and you are taking good care of my Thomas.

Tuesday, August 19, 2014

If You Are Here On My Blog And Live With Schizophrenia, Please Read This.

It has been made known to me in spectacular fashion through a private message that I need to remember that there are people living with schizophrenia here on my blog and that I need to be more sensitive to their feelings. This broke my heart to read because I didn't realize I was hurting feelings with what I was writing. I would like to take today to address those of you living with schizophrenia who are here on my page and most especially those of you who are hurt by my words.

I began this blog in May 2013 because I wanted to get the message out there about schizophrenia and try to share some of the truths about it so that people who didn't understand the illness would hopefully learn something and ideally seek more information and most importantly change their views of it. I'll admit I began this page with a great deal of naivety but a lot of heart and determination. At that point Thomas had only been DIAGNOSED 7 months but we had been living with schizophrenia far longer without knowing exactly what was going on. From the get go my heart was always in the right place with this project and it was never my intention to hurt anyone.

By the end of May 2013 Thomas had a major psychotic break and without thinking it through much, I posted a sentence or two to the page that he had just been hospitalized having had a psychotic break. What came of that was an outpouring of people that cared about Thomas and cared about me and wanted to hear how everything turned out. From that point forward I began to mix Thomas' story and MY story into the page along with information I found about schizophrenia. My blog took shape very quickly and with the exception of a couple of stumbles along the way, it has become very successful in my opinion.

Along the way I heard from many people with schizophrenia that they appreciated what I was doing because it helped them understand what their caregivers were going through. This was an unexpected benefit to my blog in my opinion and with many more similar blessings from people living with schizophrenia about what I am doing here since then, I kept writing.

I will be honest though. I didn't fully think through my entire audience. I wrote with my heart and soul about what Thomas goes through and my feelings about it. I know that oftentimes my feelings felt like facts to many of you but what I tried to get across was that for today, for that particular day when I was angry or hurting or joyous, those were my FEELINGS for that day and they were guaranteed to change and are still from this day forward going to change. I realize I don't always paint a pretty picture and I realize that my thoughts and feelings might not be what people want to hear but this is my personal blog and I write and will continue to write about MY perspective of this illness and my perspective of this illness as it manifests itself in Thomas.

Now, again, the part of my blog that is me writing, like right now, are my feelings. They are not facts. I don't believe that in any way, shape, or form that I tell everyone's story by telling my own. There are people in much worse situations and there are people who have lost their loved ones to this illness in irreparable ways. Thomas and I are blessed in that regard because so far, for the most part, Thomas has been what I term a "quiet schizophrenic" meaning that his illness, while strong in it's manifestation at times, is manageable because he doesn't act out by hurting me or his family or society and he doesn't leave home searching for answers, peace of mind, or an escape from his demons. But he is still living with schizophrenia and I will continue to tell his story along with mine for as long as people care and want to learn.

Now, I want to address Thomas' role in this blog. He is not a writer of it nor is he a reader of it. Oftentimes I share with him what I write or what you guys say so that he feels supported by society and so that he doesn't feel alone. I have asked him repeatedly both when he was his sickest and when he was his healthiest if he minds if I write our story and he has been extremely supportive of it every time I asked him. To add a little perspective, we were offered a chance to be on Dateline (A nightly television news magazine here in the U.S.) and I explained to him that there would be TV cameras in our house and people asking questions of him about what he thinks, feels, and deals with. He was excited about the project and ready to get started on it. Since then, after that fell through, I have written articles or have had articles written about us and

every

single

time

I have run them past Thomas to see what he thinks and he has supported them completely.

All of this I direct towards those of you on my blog here that are living with schizophrenia that worry about Thomas. He is ok. I am not so arrogant as to believe that I am alone in this journey, in fact, he is my ONLY (when it comes down to it) fellow traveler and his heart and mind are my responsibility when it comes to this blog and to life itself, as his mother, to protect and love. I've done it since the day he was conceived and have done it all of his life and will do it in to perpetuity.

I also want to say to those of you living with schizophrenia that are here on my blog, that I am sincerely and deeply sorry if I have hurt you with my words throughout the time you have been here. That has never EVER been my intention and I will make it a point to pay attention to your feedback if you choose to give it to me. From day 1 your contributions to my blog have been very much appreciated and I have always considered them priceless because you give me and everyone else yet another perspective to consider. Your stories and thoughts will always be welcome here and I can guarantee you that they will be received with appreciation, with love and with compassion. While there are many who do nothing but lurk here on my blog, there are many more valuable people who do speak up and who do care and who do want to hear you.

While this blog is my PERSONAL blog and while it is MY OPINION and MY FEELINGS, I have never placed blocks on this page or on people so that they wouldn't be able to speak freely. I am an open book which is made apparent every day that I write and share my story and as such my heart is wide open to take in whatever anyone has to say.

So to those of you who live with schizophrenia who feel lost or ignored or insulted by my blog, I hope that this post has helped you better understand my intentions. I care about each and every one of you as a part of me because you are here. I know that oftentimes your lives are a struggle, that many of you have little to no support at all from friends and family, and that you feel alone but right here and now I offer my support to you and will always be here. If you don't want to speak out on the page, private message me. I will read what you write, I will give it wholehearted consideration and I will do what I can to offer you what you need.

I hope that today with this posting, I have given you a better understanding of my intentions. My love and support does not discriminate. It may be naïve at times but it is all backed with the best of intentions.

Monday, August 18, 2014

A Mother And Her Baby Boy

There is a special population of people here on my page made up of mother's with son's with schizophrenia. It seems that more often than not, they are the ones that I hear from in private messages asking me for support and advice. Beyond the private messages, out in the general population of those living with and loving someone with schizophrenia, there are these same mom's trying to cope with losing their child, their baby they once knew. I don't use the term baby boy to be cute or minimizing in any way. I use it because I know, just like me, there are so many mom's of sons who look at their now twenty-something struggling, sick, child and wonder what ever happened to the little boy they once held in their arms. I have a picture over on my regular blog of me holding Thomas in my arms the day that he was born. I held him and looked into those eyes and wondered what his future would hold. I looked in to those eyes and thought about how much promise he had but when I looked in to those eyes I never once, not even for a second, thought he would end up with schizophrenia.

I watched my baby boy grow into a toddler with a great curiosity and together he and I laughed at the bubbles in his bath or the kitty cat chasing a ball filled with catnip. I saw promise and I had hope and still I didn't know the darkness that awaited him. There were times that now, with 20/20 hindsight, I could see that something wasn't right. What I now understand as hallucinations, I once wrote off to a child's imagination. Never once did schizophrenia enter my mind but I began the now long battle that has since stretched out behind me, of helping Thomas deal with the demons around him.

By grade school my once happy, curious, lighted little boy became someone different and while he had good times and met many milestones shared by his "normal" peers, he still struggled with a monster I didn't understand and couldn't name. As grade school wore into junior high and then in to high school, the baby boy I had held in my arms in November 1994 slowly disappeared until finally the beast that is schizophrenia finally made itself known in bold and undeniable fashion. It was out and we found Thomas diagnosed with acute paranoid schizophrenia. The journey we have taken since is the same one all of us mother's with sons with schizophrenia now take together.

Then, for me, a private message or two come in to the page. Desperate mothers full of questions about their twenty-something sons begging for help and hoping to understand what happened to their once handsome, clean, cognizant, happy boys they once held in their arms and had hope for. Some are fighting with "the system" just to get rights to get some sort of information about their son locked behind psychiatric hospital doors and some are like me, living day to day watching the ebb and flow of this illness make it's way through their (once) baby boy.

We are mother's of sons with schizophrenia. I do not intend to discount the other relationships out there by singling out my fellow mom travelers but there are many of us standing here, rooted in one spot after having gotten another denial for information about our son's locked away or rooted here in one spot watching as our son displays some behavior that troubles us. We are mother's of sons with schizophrenia and we stand here or sit here bewildered at what has become of our baby boys, who our young adult son's are now. We are mother's of sons with schizophrenia who hope against all hope that the "better days" that we are promised by our sons' doctors and our peers in our same situation and our family members searching desperately for a way to help us feel better, are somewhere just around the corner. And, in the end, when there are good days, and they WILL come along, we are mother's of sons with schizophrenia and we succumb finally to a peace of mind that what we thought was once lost, is found again in a smile, a hug, a milestone met and a vision of what we had hoped possible for our sons from the very day we first held them in our arms just after being taken from our bodies and handed to us crying and bewildered or peaceful and wide-eyed.

Saturday, August 16, 2014

A quick note for this Saturday morning.

First of all I want to answer page member Malena's question about how to get an advocate. I found mine in the next town over and their sign said something like "Disability advocacy" and I went inside to see what they did and this is the kind of thing they do. They are a non-attorney representative so theoretically they can't be paid out of the "winnings" from Social Security. Malena, perhaps check your telephone book for something like this or for an attorney or go online. If you live in a small town it might be a little harder. The only attorney I found that I liked and trusted was 50 miles away and he wouldn't do anything to give me help until Thomas was denied and then he makes it his life's mission to get approved. I hope you are able to find someone to help you that didn't turn out to be the pain that mine is. Good luck!

As for me, I have got to say this first. TRUST ME, me, more than any of you, is tired of writing about, or reading about in your case, the trials in my life that seem to be thrown my direction a lot. The thing is, though, I feel a responsibility to tell you because you come here to the page to learn about what it's like to love someone and care for someone with schizophrenia but sometimes (more often lately apparently) things happen that get in my way of doing that.

This time around I haven't been on my page much writing because Monday I injured a ligament in my neck and it's made my head and neck virtually immobile so sitting at a computer for too long hurts very badly. I have been through the wringer trying to get help which included dealing with some pretty nasty healthcare workers and ultimately I find myself with very little help for my situation. It seems I have degenerative disks on my c5 and c6 bones in my neck and then also the torn ligament and muscle spasms to top it all off. The "cure" for this......well... there isn't one. Because it's a ligament injury, any chiropractic care, any physical therapy, any massage therapy will further injure my neck so all I can do is keep my head and neck in a comfortable position for the next 4-6 weeks until the ligament heals which entails me basically, as best as I can understand the instructions given to me, I can't really move my head, tip it, nod it, you name it. As a result of all of this, sitting at my computer hurts so I don't know how much of that I'll be doing for the next few weeks. So, please bear with me. I will try to keep the page lively but it may be sporadic

Thursday, August 14, 2014

The SSI Advocate

Since Thomas was denied SSI I went ahead and contacted his advocate and asked what we should do. She gave me instructions to contact Social Security and fill out an appeal. At the time that she told me that I, then, went through Social Security and took care of getting that form. I then called the advocate back.

I called.

Then called again.

Then called again....

Each time I left a message with her and I got no response. Nothing. It went to voicemail every time and even after telling her that I had called multiple times and had not heard from her, she still didn't call me back. So, I decided to go through other channels at that office and I spoke to a manager. Of course she told me that she had "just had a conversation with Kim" and that she "was about to call me and fill me in" but I didn't believe that for a second. You see, the deal is, because Thomas was denied, they said that they couldn't do anything to help with the appeal, that it was all in my hands.

Huh.

Okay.......

Isn't that your job?? To advocate for Thomas and get him through the entire process of securing disability?

She did tell me that when the appeals process was over and the process moved on that they would pick up and help from there. After her saying that I thought about just exactly what they had done for Thomas. To make this post short I will narrow the whole mess down to that they basically filled out the initial application. From there, everything else has been in our hands. Every form, every meeting with Social Security, every question I needed answered, all came from my initiative and all were dealt with through Social Security.

Not the "advocate".

So, if they can't help me through the appeals process and if Thomas sails through that fine, then why am I going back to depending on the "advocate" to help? What burns me up is that they will get a cut of Thomas' back pay when he is approved and that potentially could be quite a chunk of money, a least a couple thousand, and somehow I just don't see how they deserve to get anything more than probably $100 for filling out the initial application.

Interestingly when I had one of the meetings with Social Security they looked at who was "handling" the case and they told me that these people cannot take any part of his disability because it would be illegal.

That

Was Interesting.

So, with everything that has gone down with this whole process where the "advocate" is concerned, I am going to see about letting them go. I'm comfortable with the process of acquiring disability now, I have been a pro at all of the meetings with Social Security and frankly, if all there is left to do to determine if Thomas can get SSI is Social Security themselves pulling Thomas' medical records then what exactly is the advocate going to have done for us in the end?

Needless to say I am irked (to say the least) and I think I need to get control of this whole process and toss the "advocate" to the curb where she belongs.

Tuesday, August 12, 2014

Taking Just A Moment (A Post About Robin Williams' Suidcide)

It's probably all over your social media and maybe you're even a little sick of it by now but I'm not. I'm heartbroken on so many levels. The death of Robin Williams was such a shock and I was left stunned when I got that CNN alert that he had died. Now, I know that his death has nothing to do with schizophrenia but what it does have to do with is severe clinical depression, something many of us suffer from. His death has brought the conversation about depression to the forefront where it should have been all along. This amazing, funny, loving man brought so much light with his almost manic performances and appearances but as in all things in life, the yin and yang was at work here. His light shone so brightly when he was performing for us but his darkness waited for him when the applause had stopped and he was back home. It is utterly tragic that his death had to happen but if one thing can come of it for those of us in the mental health community, it is that we are now talking about depression and the toll it takes on a person living with it, not to mention the family members affected by it too. It is almost irresponsible for someone like me, who writes about schizophrenia, to not write about this. I have an audience and all of you have audiences of your own and together we have to talk about the effect depression has on so many people.

I think about this beautiful man and his wife and his 3 children he left behind and I read his daughter's tweet in remembrance of her dad and I think about how this wonderful man was just 63 years old. I then think of my own dad who suffered from depression also and while he died of a heart attack and complications from dementia, he suffered much of his life with depression. He fought those demons valiantly throughout his life and many times didn't find success and would sink into an even darker place. Robin Williams was 63 and died of an apparent suicide and my dad was just 71 and died too young. These two men's death are different but they are the same to me as they are both tragic and the leave behind grieving families.

I sat this morning and watched the "Today Show's" tribute to Robin Williams and I cried tears of grief for the loss of him, for his wife and his children and I cried for my own loss of my dad. Death is inevitable but when it is brought to us suddenly and unfairly it is that much harder to bear.

I indulge myself in comparing the two men, my dad and Robin Williams only because my heart is broken today because we lost a great comedian, a bright shining light, and a gift to this world and just recently I lost my dad. The real story today, and it is not lost on me despite my indulgence in comparing the two, it that Robin Williams is dead. I guess after all of what I have written here today, my one hope is that his death opens up a conversation with people today. Perhaps it will be just from one friend to another where one tells the other, finally, how hard they have struggled. Or perhaps the conversation will open up inside a family where the dad admits that he's hanging on by a thread and he can't last much longer and he begs for his wife's help. Or maybe even it'll open up an even bigger conversation to a larger audience in a forum somewhere where perhaps in the crowd there are people with depression who will find the strength to get some help finally.

Robin Williams, you will be missed beyond all measure and I for one will spend today watching a couple of my favorite movie's you were in (Dead Poet's Society and Good Will Hunting). In your death though, you have brought a gift to others. We will talk about depression and we will save others today. Your life is not in vain, not by a long shot. You made us laugh but even as the stage fades to black for you, your light will shine on us all forever.

Monday, August 11, 2014

Happy Halloween!!!!!!!!!

Okay, yeah, I know it's a little early for Halloween but I have a really good reason for bringing it up. It seems we have found a kind of cure for Thomas' work night blues.

Saturday night he got in the car after work and I was prepared for the usual low mood from him but I asked anyway,

"How was work tonight?"

What came out of his mouth next was such a shock to me that I almost slammed on the brakes. His reply?

"It was good."

Good. Yes...good. Said with no sarcasm, moodiness, no nothing. It was a genuine and to my ears it was the most beautiful sound. I had to ask him again to see if his answer would be the same and it was. I asked him why he had had such a good night and this is why:

It seems that the store has finally brought in some Halloween decorations. They are stocking up (WAY too early in my opinion but that's beside the point) and Thomas gets to be around it all and peruse all of the different things. This fact, these Halloween things being there, seems to be the thing that has helped him feel better about work. He is so excited! He then went on to tell me this,

"There is a skeleton laying in a hammock. Do you want to know what his name is?"

Omigosh (I thought) "YES"! (I said) Tell me what his name is since he obviously makes you happy. (I thought)

"His name is "Lazy Bones. Get it? He's a skeleton and he's laying on a hammock so he's a lazy bones!" He told me as he laughed a little.

Okay, so I'm not going to hide the fact that right now I really love Mr. Lazy Bones and have half a mind to go buy one and hang it in my house in August. Could it be? Could the impending holiday season be the thing that is going to keep him happy and remaining at work for a while longer? I know he REALLY loves Christmas so he has to at least stick around for Christmas.

Right?

I hope so.

So, from out of left field (or left graveyard if I am trying to be funny) Lazy Bones came in and saved the day. At the 11th hour when all hope seemed lost, some silly decoration strung between two poles has saved the day and helped Thomas feel better. So, for 2 nights now he has gone to work fine and come home stating that he had a "good" night at work.

I couldn't be happier right now.

Sunday, August 10, 2014

Good morning everyone!

I haven't been around for a couple of days because I have had some family issues to take care of. My mom went on a 70 mile bike ride and somewhere far from base she fell very hard and hit her head and bruised up her entire body. She has a concussion and is hurting pretty badly so I have been spending time with her like the doctors asked. She wasn't supposed to be alone for a couple days so I stayed with her.

Thomas is doing well, not much different but is tolerating the increase in his meds. His WBC's fell significantly though so we have to get his blood retested tomorrow to make sure he's ok. I expected this to happen since we doubled the amount he was taking. It's funny how calm I have become about the whole low WBC issue. Now, I just say,

"Eh, okay, let's run over and get it tested again."

Just like the world isn't coming to an end...which is isn't.

As for the rest of today, I am going to work here on my blog and I am coming up with some new things to share and then Thomas works tonight so that's pretty much how the day is going to go.

I hope you are all doing well today and that your loved ones with schizophrenia are doing okay or at least have some peaceful moments today. I will be thinking of you all.

~melanie

Wednesday, August 06, 2014

A Collective Effort

Just like we do every other week, Thomas and I drove up to see Dr. N. I was in fighting mode once we got to the waiting room anticipating being told I needed to wait in the waiting room while Dr. N. talked to Thomas. It wasn't that I didn't want the two of them to have time together but I really wanted to speak to him and tell him what I had noticed as Thomas' mom. I hadn't seen Dr. N. myself for 6 or 8 weeks so I felt like this appointment was important.

When Dr. N. peeked around the corner to invite us back I made solid eye contact with him and asked him if I could come too so that we could all talk together. He easily agreed and I was relieved. Once back there he and Thomas went through the usual questions and then, just as I thought would happen, Thomas completely downplayed what had happened Saturday night and Sunday. This pretty much confirmed for me what had happened in the 6 or 8 weeks I had missed. Because Thomas' memory isn't the best, he doesn't give an accurate picture of his health. At any rate, after he said what little he said about Saturday, I put up my hand and got Dr. N's attention. I explained to him what REALLY happened and how Thomas was struggling that night and the next day and I saw that he was really listening to me. I also told him that I felt that there was some delusional thinking going on. He heard me.

We went on all of us together talking about Thomas' depression and how to solve it. The idea of adding in a different anti-depressant came up but was dropped in favor of other plans. I was glad about that because for some reason I felt bad that yet another pill would be thrown Thomas' direction. I don't know, there's just something about Thomas right now that I feel like I need to protect more than usual and adding another pill to the pill case just seems kind of cruel to me. It's very hard to sit in on appointments where we all decide what pharmaceutical concoction to throw at Thomas. I surmise that this comes from that little corner of my mind and heart that doesn't want Thomas to be sick after all.

Then the clozaril came up. Ah the clozaril. This is the med we've--or rather they--have been reducing for a while now. I can't say that I have been much of a fan of it from the start but once the Latuda was added in, clozaril (and Latuda) seemed to be the magic combination that saved Thomas. Clozaril is also the only one that has been messed with and it has been, after the reduction of it on several occasions, that Thomas had breakthrough symptoms. Now, because of all of that I felt that adding a little of it back in might help Thomas. It's what I personally believed wholeheartedly and it was what I was going to fight for.

I was pretty straightforward with Dr. N. letting him know that I felt that the COMBINATION of the two meds was what was keeping Thomas stable and he seemed to reluctantly agree that that was true. His plan had been to remove one of Thomas' meds (the clozaril) as fast as possible once he got stable. Contrary to his reputation that I heard about before Thomas ever saw him, he is not a doctor that wants to throw a pharmacy of meds at his patients and as such he wanted the clozaril out of the pill box.

In the end though, after listening to both Thomas and I, he doubled Thomas' clozaril dose. Doubled. Yeah, even I was a bit surprised. He must have heard me though and decided that Thomas needed it and Thomas agreed to it hoping that it would help his depression.

So, last night we were back to square one. A VERY sedated Thomas greeted me at his bedroom door when I came to say good night and my heart broke seeing him like that. That is one aspect of the treatment of schizophrenia I will never get used to. We said good night and we all went to bed.

Today is a new day. Today we start the march forward and we wait to see what the med change will do for Thomas. I fear that he will hate the sedation and will want to reduce it again. Right now all I want is his psychological suffering to be minimized though so the next few days are going to be ones of cooperation between Thomas and I as he gets used to and accepts this change.

Tuesday, August 05, 2014

Who's In The Driver's Seat?

You know how it is when you say things, or in my case write things, and you know what you're talking about but then someone repeats it back to you from their point of view and what you've said takes on a whole new meaning? Well, that happened to me yesterday.

As I said yesterday (I think), I emailed Thomas' therapist. The poor guy got a long email full of my desperation for someone professional to listen to me and take me seriously about the things I see in Thomas. I explained to him everything that had transpired since Saturday and towards the end I talked about how I feel like all of the meds decreases might be the culprit. In it I mentioned that I had not sat in on any meetings with Dr. N. for weeks so I really didn't know what was being said but I did know that Thomas has been requesting decreases because he hates the sedation.

I had said that last few words about Thomas and his meds a few times lately but my context was just different than what Thomas' therapist repeated back to me. His response to me was literally 2 sentences with the most important one being that he "had no idea that Thomas had been in the driver's seat with his meds." Right then and there it hit me. Thomas has been in the driver's seat about his meds. His reasoning for reducing them was that he didn't like the sedation.

Bam!!
Isn't that pretty much the #1 reason why people stop their meds?

So all this time, right under my nose, albeit gradually, Thomas had been choosing to decrease his meds heading I don't know where with his plan. Now, I'm not saying that Thomas even fully realizes what he's been doing by requesting the meds decrease and I obviously agree that it's his body, his life to do with what he pleases but he has run unchecked, in my opinion, for weeks now. My own meds appointments have coincided with his so I haven't been a part of his not to mention, as you know, I have been struggling myself lately so I haven't seen the signs of relapse in Thomas until recently, but in missing those appointments and in missing the signs of a relapse, I have now found my kid in an increasingly unhealthy situation.

Needless to say, today is our meds appointments day and thankfully mine is after his so I will definitely go in and talk with Dr. N.. I'm already prepared to be dismissed and if that's the way it goes then so be it but then in my opinion we'll be waiting two more weeks till the next appointment and I'll be watching as Thomas struggles more and more.

It's not easy being the mom of or caregiver for my son with schizophrenia. I think most of us here that are like me would agree with that. The thing is though, while it's not easy and it is sometimes heartbreaking, I wouldn't trade it for the world. I mean, if this is the plan for Thomas' life and mine as well, handed down from the powers that be, then I will do it with love and understanding until the day I take my last breath. Hopefully today will go well though and together we can come up with a plan to help Thomas feel better.

Monday, August 04, 2014

What Thomas Did To Plan His New Life He Dreams Of

Let me first speak to a couple people's answers about me letting Thomas go and do this thing on his own--meaning (at least that's how I heard it) that I am holding him back with my own agenda. Here are Thomas' realities:

--he forgets his meds all the time
--he wants to quit his job which will mean no income
--he has a very very small savings, hardly enough to fund 3 days away from home and hardly enough to fund a new way of life.
--where he goes he will have zero support including finding places to get meds and medical care
--every time in the last 24 hours that he has told me about some opportunity he found, I broaden his vision with the realities of the job he wants to take.
------------------------for example: He wants this job in Alaska where he does housekeeping. HE DID NOT KNOW WHAT IT MEANT TO BE A HOUSEKEEPER. I told him that he'd be cleaning hotel rooms and his excitement dissipated as he realized there was no way he wanted to clean up other people's messes.
--His dad and I WILL NOT be funding this getaway of his so he's on his own financially
--Yesterday when I handed him the list of websites to check out and made a big deal out of his possibilities with my excitement for him and his future he LITERALLY TOOK THE LIST AND WENT TO HIS ROOM AND SAT DOWN AND WATCHED IDIOTIC YOUTUBE VIDEOS. No researching, no nothing until his frustrated dad went in and reminded him that if he wants what he says he wants he will need to do the research on the websites I gave him.
--He doesn't know how to do laundry, doesn't care to learn and I would put money down as a bet that if he were alone there would be no clean clothes or showering for that matter.
--He doesn't know how to prepare a decent meal

and finally,

--he does not see that he has schizophrenia. He knows that's his "label" but he doesn't grasp what it really means to have this illness which includes the fact that right now, what he's feeling, how he's thinking, what he's doing, is BECAUSE OF his illness.

I could go on but I won't. I think you get the picture. I was really excited for him and did what I could to help him. I set MY fears aside to encourage this "dream" of his. I, in no way, discouraged this endeavor of his.

By the time he left for work he was intensely depressed, he was fighting or flat out ignoring the things I asked him to do that I ALWAYS ask him to do. And in my efforts to help him set goals so that he can move away, he and I made a list titled "How I Can Change My Life" and by about the 3rd reasonable goal I watched as his mood sunk so low, his expression glazed over, he got fidgety, and he stopped helping come up with ideas. I will post the list tomorrow so you can see what we worked on and see that what that list was about was the simplest of things that anybody, with goals like he says he has about moving out, could and should put together to help plan for their future.

I want so much for him and for his future. I WANT HIM TO HAVE THE WORLD!! I would do just about anything to make that possible for him. I AM DONE (AND HAVE BEEN FOR A WHILE) CODDLING HIM AND FORCING MY DREAMS AND IDEALS ON HIM. He is 19, it's time for him to grow up and I know that and I see that.

Ultimately though, if yesterday is any indication, he is not going anywhere any time soon and I watch, again, as the light leaves his eyes and his expression as the big wide world he dreams of closes in around him as he learns what it REALLY means to become independent and move away.

Sunday, August 03, 2014

A Call For Action (Help For Thomas)

Okay guys, I need your collective brain power to help me with something concerning Thomas. Here's the thing:

Last night at work Thomas had THE WORST panic attack that he has had in a long while. When I picked him up he admitted that the reason he had the attack was because he was basically trying to muster courage to quit his job right then and t...here. The problem was that the more he thought about doing it and the more he thought about the consequences, the more panicked he got.

When he came home he took a lorazepam and calmed down and then asked me to come talk to him. What he said is that he doesn't want to work anymore. He wants out of his job. Not only that, he feels hopeless about his situation and life and he said he was considering leaving here and going somewhere else. He wants out of this house and understandably out from under me and his dad and he wants to go someplace new and see something wildly different than what he knows now here in our little city. I talked to him about some ideas of what he could do but explained to him that wherever he goes he is completely in charge of his life which includes his meds and eating right and getting enough sleep along with a few other things. I am not an adventuresome spirit myself. If I were him (and I was a 19 year old girl at one point--obviously) I would be scared to go anywhere. In fact, when my time came to leave the nest I went about 4 towns over and went to college but never left home completely.

He, on the other hand, thinks he wants out of here and to go far away and to somewhere strange and different. He's pulling on the reins and fueled by his hopelessness about his life so he's willing to do anything.

Now, I want this for him so bad. He's relatively stable and is now just a 19 year old kid like every other 19 year old kid who wants out of their small town and wants to see the world. I want this for him and gave him a couple ideas but I'm worried about him taking his meds. The rest of it I think it would be good for him to go out and make a thousand mistakes and triumph when he solves them. I think he needs to try and fail and try again and become something more than just a 19 year old kid with schizophrenia who hates his illness and wants to be free.

This is where I need you guys. I need suggestions for places he could go. I suggested Outward Bound to him which is an (average) 21 day trip into the wilderness where he would learn survival and navigation skills to name a couple things. It would be structured and, I think, relatively safe and stable for him to do that. I also tossed out the idea of going to live with his aunt and biological dad and their family and he seemed to like that idea though I personally have a few reservations about that. But guys, I need you now. Does anyone know of any programs he can get into that would let him see the world or even just the U.S.? Is there something out there for stable but mentally ill young people where they learn independence and/or see the world so-to-speak? I need ideas. I don't want there to be any limits set as far as ideas go with, of course, at least taking into consideration his illness and the meds thing. Whatever you've got though, I want to hear.

So, please, help me brainstorm this for Thomas. He's young, he's pretty stable and he WANTS OUT. Where can he go?

I look forward to your answers.
Thanks guys!!!

Friday, August 01, 2014

Valuable Insight From Someone With Schizophrenia

After my post yesterday about wishing I could understand Thomas' moods, page member Heather C. left this message to me and to all of you. It helped me immensely and I thought it might help you too.
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I cant speak for Thomas about how he feels but I often get exactly the way you describe Thomas and for me it is usually the illness that causes this anger and not wanting to talk and it is almost impossible to put into words what is causing it. we often don't know. it is just one of the things schizophrenia does to us. When i give the curt one word answers it is almost always because that is the best i can do at the time. There are times when I am just absolutely incapable of having a conversation with anyone. It is physically and mentally impossible. The anxiety is so high when that happens so when people ask me a bunch of questions or how i am feeling it is just overwhelming and anxiety provoking. There have been times when I think if even one more person says anything to me i will just implode.

I know in my heart that when people constantly ask me how I am and what is going on that it is because they love me and care and are frightened but I just cannot talk sometimes. It is not personal. it is purely a schizo thing. we dont handle sensory input well and there are times when we are just completely overloaded and even a simple conversation for me can be harder than the most herculean task. when i am like that i dont always understand what people are saying to me and often everyday, normal stuff that other people talk about, though it is important to them, just seems so trivial and unimportant compared to the constant turmoil going on inside me. For me to talk when i am so overloaded and anxious and really unable to do so, depletes every last shred of reserve I have in me. It is very stressful to be like this and have people constantly analyzing me and asking me how I feel. Like I said I dont know why and it is often impossible and draining to come up with answers for people.

Going out into the world for work or shopping or whatever is also completely draining. We have the turmoil going on inside and from all the stimulus we are receiving plus we have the added pressure of trying to appear normal in public and for those around us. sometimes after being out for even just a few hours I need downtime by myself with no one talking to me or demanding anything of me. I have to build those reserves up again.

As I said I am only speaking for why I get like that sometimes. It may be something completely different with Thomas. I hesitated to write this because I know you do so much for Thomas and are so great with him and my parents are the same. I only wrote because I can tell you are scared and not knowing what is going on and it is possible thomas is going through the same thing I go through, and maybe this will give you or someone else some answers. I just hate to see people get so worried. I also want you to know it is never anything personal it is just that some days or weeks living with this illness just takes every ounce of strength and will we have just to get through and there just isnt anything left over and we are not capable of more than grunting out one word answers. It doesnt mean we are any sicker just that we have hit the wall in coping that day or few days.

I hope this helps and didnt offend anyone who is a caregiver. Also if you are a caregiver or parent please know that we know and appreciate how much you all do for us and we know we couldnt live without you. I feel guilty when i feel like that and cant talk but I am just simply not able to at times. I often think it must be harder to be the parent or caregiver than the person with the illness.

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