Thursday, April 30, 2015

Mental Health vs. Mental Illness

Photo Credit: NAMI


Tomorrow begins Mental Health Awareness Month. I like that...the mental health part of that. Yes, we should focus on mental health. So much is said about the mentally ill and mental illness and we forget this other side, that there is hope and health waiting for us all somewhere along the road. Whenever I talk about mental illness it feels kind of dirty to me. It's like dunking something in mud and pulling it out and letting the gunk drip off of it; that gunk, in this case, being the illness. Why can't we talk about mental health?

-Recovery
-Medications that work
-Therapy that changes lives
-Caregivers and the work they do to help keep their loved one healthy and happy
-Advocacy for those that have a certain illness
-Sharing our stories so that others can find some hope

I could keep going listing things that are in line with mental health.  That is what May is about and that is what I am going to work on bringing to light as the month goes on. I am a bit behind the eight ball as far as planning what I am going to do but I promise to make a real effort so that you all have something to share to your timelines during this very important month.

Even more exciting for me is that towards the end of the month there will be a Schizophrenia Awareness Week.
 

This is my week to shine. My week in that I get to do a lot of things to try to change the perception of schizophrenia and to educate people on just what schizophrenia is. It has passed through my awareness in the last couple of days about the James Holmes trial. For those of you not familiar with it, this man came in and opened fire on a full movie theater in Aurora, Colorado in July of 2012. The media, of course, is now reporting, almost with zeal, that James was in fact a man with schizophrenia. Oh yes, let's be sure to get that fact out there. I don't know why it angers me necessarily but I guess it comes back to why I started this blog and what it is I write about and post articles about. Schizophrenia is not all of those violent acts we hear and read about. If anyone with any power in the media would take some time to do some reporting on someone like Thomas or one of your loved ones who is just simply trying to get through the day, then the world would see that it isn't all about bullets, tear gas, blood, carnage and terror. So, I remain on my mission to educate the public about schizophrenia and during that very special week of schizophrenia awareness, you can bet I'm going to fire my cannons fast and loud. I will not let this go. I never will. The world needs to know the truth and that is my one-woman mission.

On another front, Thomas is working on his next blog post. He's come up with a new title for his blog and he's calling it Tom's Corner. Doing this will make it so that his post doesn't have to be on a specific day. We are also working on trying to figure out what to write about. The other day he had his headphones on and he was typing furiously something about a riot. I asked him what he was doing exactly and he said he was listening to a song with a title something about a revolution and he was writing a story to go with the song. Never have I seen him type so fast and furiously. It gave me an idea, though, for his blog. I told him he needs to find a song that touches him and to write a post about himself and that song. I saw so much passion in what he was doing and I'm thinking he could parlay that skill of matching a song with a story into something good for the blog. He did show me some of his other works using music and story telling and I read through them but I felt they were........

......perhaps too violent, too polarizing......

.....too delusional.

I complimented him on the work he had done and how well he had matched the songs with the stories but I wasn't sure those types of things belong here on the blog. I'm hoping that what he does come up with eventually is more a showcase of his heart as opposed to his head which is clearly still fighting delusional thinking. I can't say for sure he'll do the song/blog thing so we'll see where he finally ends up.

Now, just a reminder, as far as commenting on this website, when you go to comment there is a drop down box that gives you choices of how you want to be known as the author of the comment and "anonymous" is one of the choices so feel free to use that resource to comment. I know some of you are still fighting with this but I've looked things over and can't figure out why exactly there is a problem other than that you need to choose "anonymous" from that drop down box. As always, however, you can comment under the post of this blog on Facebook. I'll see it in both places. Oh yeah, also, if you comment here on the website and don't see it, it's because I have to moderate the comments and manually post them. That always takes a day or so.

I do hope to continue to hear from you all how ever you choose to comment. It makes me feel less alone behind this computer screen.

Wednesday, April 29, 2015

It Is My Fault After All


I got an American Psychiatric News Alert yesterday in my email about a study titled "Anxious Parents Can Transmit Anxiety to Children, Twin Study Shows". It said:

"In summary, the association between parental and offspring anxiety remains after accounting for genetic transmission. These results are consistent with a direct, environmentally mediated effect of parent anxiety on offspring anxiety or could reflect anxious adolescents eliciting anxiety in their parent."

You will have to read the study I have linked to above to fully understand it (it was pretty complicated to weed through) but my personal takeaway was that the anxiety I exhibited as Thomas grew up, shaped how anxious he is now. Yes, there are genetic transmissions of anxiety but there is also environmental and I'll be the first to tell you that the environment that Thomas grew up in was a highly anxious environment.

I suppose you could have called me a "helicopter parent" though I tried so hard not to be like that. He was my only child, though, and the fears and anxieties from my own childhood no doubt bled through into my parenting style. Because he was my only child, he was my focus and all I wanted, more than anything, was to protect him from the world. I may have made a mistake in doing that.

Then there was me. Just me. I was anxious. All the time. I had regular panic attacks, I holed up in my house, often with the curtains closed, I couldn't go out grocery shopping without feeling like everyone was looking at me and judging me. The list goes on and on. I'm sure, at the time, I felt like I hid it well. I tried but failed because my anxiety was more powerful than my strength to stop it. All of this, no doubt, shaped Thomas into the young man he is--anxious and afraid.

So, this begs the question, if it's my fault, if I passed on the genetic propensity for anxiety and then I reinforced it by exhibiting anxious behaviors in front of him, how much of who he is today, the anxious side of him, is because of me?

After reading the study, I'm feeling pretty guilty right about now. The problem is, hindsight is 20/20 and Lord knows, if I could go back, I would certainly do a lot of things differently. As I type this, fresh in my mind are times when I exhibited anxious behaviors around Thomas and no doubt caused him anxiety. Oh yes, I will own my part in who he is today but that doesn't change the guilt I feel about what I've done to him. Without serious anxiety, his paranoia would be lower, he'd feel more brave to go out and experience  life, he could go to work without worry, he could make phone calls to get an appointment to get his haircut...

...he could do so much more.

The question is, though, what can I do about it now? The damage is done. To some degree it still gets reinforced in him by me too. I am far less anxious than I used to be, for sure, but it still affects me from time to time. This is the million dollar question that all of us parents ask ourselves as we raise our children and now when they're grown. What could I have done differently? Why couldn't I have been a better parent? Both of which are loaded with a healthy amount of guilt and remorse.

I don't really have the answer to this. I do, however, have a study that implicates me as an anxious mom and points a finger directly at me and who I was and how I treated Thomas as my kid. I feel horribly guilty because I wish I had done things differently for Thomas knowing what I know now but what's happened has happened and now my job is to try to make it right for him. I'll keep him in therapy, I'll model better behavior, I'll give him strength in his times of anxious weakness and when all of that fails I will be by his side if he chooses to take an anti-anxiety pill. I love him to death and I can't fix the past. I will, however, do everything I can to make his future more promising.

Tuesday, April 28, 2015

A Spectacular Show Of Sympathy


Yesterday evening there was a moment I was both proud of and felt pain about with Thomas. He did something that was spectacular to me because I saw my son, who is so quiet and introverted, come out of his shell to help me.

Yesterday afternoon my mom was at her boyfriend's cleaning out his garage where she had stored things that belonged to my dad when he was alive. These things, to me, embody my dad. They were his tools, his yard work equipment and a few other things. Growing up I spent so much time with my dad helping him fix cars and work in the yard. My favorite memory, though, was of waking up on Saturday mornings when my window was open in my bedroom and hearing my dad mowing the front lawn and smelling the scent of fresh cut grass. To this day I smell fresh cut grass and he is immediately by my side in spirit.

My mom called me from that garage and asked me if I wanted anything and I chose a couple things for Dan and I asked about my dad's tool boxes that I can still see sitting on his tool bench in the garage of the house I grew up in. He had stuck racing stickers and other things all over them and to me, they meant everything. When she and I got off the phone immediately I felt the grief of losing my dad wash over me. Here we were again getting rid of pieces of my dad.

When my mom finished she said she was going to drop some things by and since I had just gotten out of the shower and couldn't go outside to open the garage I asked her to just leave them beside the garage. When I walked outside I stopped short; there were my dad's tool boxes sitting on a pile of a few other things. I couldn't even wait a second before I hurried over to them and began opening every drawer to see what surprises lay inside for me. Everything in those drawers my dad had handled and I wanted to hold them too. I found many things I loved instantly and I put the tool boxes in a special spot in the garage.

Later in the evening Dan came home and I was in a rotten mood. Somehow I had become angry with my mom for allowing her boyfriend to have anything to do with my dad's things. It just didn't seem right to me and I was hurting. I changed into comfy clothes along with Dan and I fought back tears as I told him about how the day had gone down. I begged him not to touch my dad's tool boxes in the garage because I wanted them to stay exactly where I had put them. I needed them exactly in that  spot to somehow maintain my sanity about having to face, yet again, that he is gone.

We went into the kitchen to cook dinner and I lost it completely. I broke down in tears and talked about how these things were pieces of my dad, the things that represent his life, and I hated that his amazing life had been reduced to just things in a garage. There would be no more dad to hug and tell him I love him.

Then...then I walked into the living room where Thomas was and he jumped to his feet and asked me if I was okay. I thought about trying to hide my tears from him but I knew he had just heard me crying in the kitchen. He looked at me and asked me if I needed a hug and again asked if I was okay and I went to him and looked at him with tears rolling down my face and I told him that grandma was getting rid of grandpa's things and that it was hard for me because they are pieces of grandpa and all that is left. He put his arms around me and held me while I cried. I felt horrible for burdening him with my pain but I decided in the moment that he knew I was sad and all he wanted to do was comfort me. I felt it would be unfair of me to tell him I was fine when I wasn't and refuse the hugs.

I stepped away from him and I saw such worry in his eyes and he couldn't take his eyes off of me. He, again, asked me if I was okay and I told him that I would be just as fresh tears rolled down my face. He reached for me again and I hugged him and let go and he looked at me again with those eyes. I could see such love and such concern in them and I was grateful for this beautiful young man who stood before me and who stood outside of himself for a minute and found a way to comfort his mom. For his sake I wiped away the tears, swallowed the grief and told him how much I loved him and thanked him for caring so much about me. He went and sat back down and I told him dinner was just about ready and I left the room.

When I got back in the kitchen, there were no more tears. My mind was on my boy and what I might have just done to him by weakening in the moment and showing him my vulnerability. I don't know if it was good for him to see me like that and to be able to reach out to me and help but somehow I think it might have helped him in some way. I wanted him to see that he has the power to make me feel better since so often I am in a bad mood and I can see his helplessness and pain because he can't change my mood.

I don't know what I did to him by crying in his arms but I hope, in the end, it was a good thing that taught him that his hugs, his holding me in his arms while I cried, were powerful tools of his that show him that he has the ability to change my life with just a hug, just as I always hope I can change his pain by hugging him.

Monday, April 27, 2015

Changes In Weight Mean Changes In Diet


A couple of weeks ago Thomas went back to the doctor to get a follow-up on his ranitidine for his stomach. Before going in, like they always do, they weighed him. I had noticed lately that it looked like Thomas had been putting on weight but I really wasn't sure how much. All of his clothes still fit him but he definitely looks like something's changed. He stood on the scale and the nurse wrote down his weight and then we went back to the room.

While in there Thomas and I talked about what had begun this whole process in the first place which was the pressure he felt in his chest. Many of you might not remember but he had had a delusion attached to that feeling of pressure that he had something evil inside of him trying to get out. Since we discovered the issue though, Dr. K. and I worked to unravel that delusion and coupled with the visit to the doctor and the new medication, the pressure has decreased some and the delusion is gone. Thomas and I talked about this and I was thrilled that he's doing so much better. He had also had pain in his ribs that he had never mentioned to me and the doctor discovered that that was related to acid reflux. Now with the ranitidine in him, the pain is gone and he's doing much better.

This is what breaks my heart about Thomas though. He is just not in touch with his physical body at all and had the chest pain but didn't identify it and didn't apparently feel like it needed to be talked about. I hate this part of his illness, and I blame the illness, because he lives with so much and doesn't say anything because he isn't in touch with it. I often wonder how much he suffers, and with what exactly, that he isn't telling me about or doesn't know how to tell me about. The chest pain and pressure were both things I happened upon by sheer luck and both things had been around a long time. I feel terrible for him!

Then the primary care provider came in and we talked for a bit and then she mentioned Thomas's weight. He had gained over 12 pounds since January!!!!

What?

How did that happen?

Well, he had been snacking a lot but not 12+ pounds worth I didn't think. We talked to the PCP and we agreed Thomas should start to limit his soda intake (he's started drinking a lot of that  lately) and try to replace it with healthier alternatives...like water. Water. Yeah, try to get a 20 year old to cut back on anything and replace it with water. I knew, then, that we had our work cut out for us because I knew there were a lot of things that Thomas needs to cut out of his diet, not just soda.

Since that day, I have worked with Thomas to help him change his eating habits. It's not easy though. He leaves the house and hangs out with friends and they go and buy snacks. His last snack consisted of two 12 ounce soda's and a big box of cookies! I don't know how to stop this! Then the other day we were running errands and he asked me if, when we were done shopping, we could stop at Burger Kind and gets "two extra-long burgers and some chicken fries".

Wait. Two burgers and chicken?

I had to gently tell him that that was a great deal of food and that because he had gained so much weight that his better choice would be just one burger and I'd buy him a chocolate milk at the grocery store to go with it (as opposed to soda). He sadly agreed and I felt horrible. It's so unfair that he is 20 and has to now start watching his weight especially after enjoying years of being a tall, lanky kid who could eat just about anything and it didn't stick to him.

Then the other day we were driving to the bank and I asked him,

"How do you feel about your weight gain? Do you think it's something serious and needs to be changed? Do you want gentle reminders from me to help you watch what you eat?"

I felt like the meanest person in the world because there's nothing worse than having someone get after you about your weight. You're miserable enough, you don't need someone telling you how to live you life and that what you're eating is packing on the pounds. That's how I feel anyway.

He told me he wanted the gentle reminders and that he is "kind of" worried about his weight. I told him that with his meds he was more likely to gain weight than the average person because the meds cause weight gain. I said that unfortunately he wouldn't be able to eat like his friends anymore until he loses the weight. Two soda's and a box of cookies was now out of the question for him.

Again, I felt horrible.

Since our talk, I have watched him cut back on snacking and seems to be trying to make better choices about how much he eats when he does eat. I did come home the other day and he shyly admitted that he had had a Kit Kat candy bar but that "it had been just one." I hated that he felt he had to admit that to me like some kind of criminal. This is just so unfair!

So, I'm keeping an eye on him and his eating. He's been depressed a lot lately and I'm certain that the depression is fueling the desire to eat. That and perhaps boredom. I don't know for sure but I know he needs to watch what he eats now for a while. I need to get him more active too but tearing him away from his computer and forcing him out on a walk isn't easy. I'm hoping that with a little time he will take over his self-care and maybe pick up walking every day, just a little bit, and he'll continue to cut back on his eating. I hate that it's come to this for him but ultimately I worry about his health. He could develop diabetes or a whole host of other health issues if he doesn't get this under control. I told him that but it's up to him to make the right choices and to start caring about himself and his health. I will help him, though, along the way.

Sunday, April 26, 2015

Revamping "Friday's With Tom"

As you have probably noticed by now, Thomas hasn't posted a blog this last week on Friday or since then. He and I have talked and we agree that sometimes it's hard for him to come up with something to write about. Other times either he forgets to write or I forget to remind him. He really does love to write and really loves you guys and your responses very much but I know it's hard for him to get his brain fired up to write. He cares very much about his audience and knows that so many of you look forward to hearing from him and he doesn't want to disappoint a single one of you.

Yesterday we talked and we decided to make his posts less formal meaning that he won't write every Friday on the spot. He is working now to find a new name for his blog--different from Friday's with Tom--and he's going to continue to post but not necessarily on any specific, scheduled day. I know you all look forward to Fridays specifically but I want Thomas to continue to love what he does and forcing him into a specific day just isn't working for him.

As I said before, at the conference, so many people asked about him. It felt to me like he was a little bit of a "celebrity" because the people there cared most about his well-being and his life in general. Nothing could have made me happier than knowing how much he is loved and how much people anticipate hearing about his life. When I told him about the unconditional love for him he was so happy and realizes how much he needs to continue to cultivate his place in the world of blogging.

I am going to ask, again, from all of you, what kinds of things would you like to hear from him? When I asked you this in the beginning you all gave him many ideas and he printed those off and worked off of the list. He, now, doesn't feel like he has any suggestions left to work off of. So, could you please pipe up again with some questions for him or some ideas for him to write about? Perhaps one idea is for him to take a facet of schizophrenia and write an educational post about it and maybe share how it affects him. I don't know. We'd love to hear from all of you again and see if he can get some fresh ideas.

I am so proud of him and his commitment to wanting to write and to all of you so, together, let's figure out a way for him to continue. Thank you so much everyone, in advance, and we look forward to hearing from you.

(In order to comment here on the website, there is a drop down box once you choose to comment and once you click that there are many choices of who you want to represent yourself as [via Gmail for example] one of which is "Anonymous". Choose anonymous if you choose to remain so or if anonymous is the only way you can get your comment to post but you don't mind using you name (even just your first name) then when you're writing your comment either introduce yourself first or sign it with your name at the end. Let me know if you have any more trouble with this because I know a few of you did. If all else fails on the website, you can always continue to comment on the post on Facebook. I'll read them no matter where they come from and try to respond to as many as I can.)

Saturday, April 25, 2015

Sailing Through His Shift



Thomas worked yesterday and things went better than I thought they might. After lamenting the fact that he had to work the night before, I thought he might get really worked up and have a lot of trouble getting himself to work yesterday. He did wake up and spend a good part of the day anxious but he was a 2 or a 3 on a scale of 1-10 (10 being the worst anxiety ever) which isn't too bad. I left him alone for the late morning and afternoon to get my hair colored so I didn't know how he was going to do with me being gone.

When I came home, he was still at a 3 but he was hanging in there. I didn't want to question him too much about how he was feeling because I didn't want to plant things in his head that weren't there yet. I kept an eye on him though and he seemed to do pretty good. As the time grew closer to him having to go to work, I watched him watch the clock like a hawk but he didn't complain of feeling any worse.

As I drove him to work he seemed stressed out and we talked a little about how work might go and I asked him if he felt he would survive the evening. He said he thought he could so I left it at that. I couldn't help but wonder if I was going to hear from him before his shift was over asking to come home early. As the evening wore on, I realized he was going to be able to stay at work. I was so happy about that.

When I picked him up at 10 he was in a great mood and I asked him how work had gone. He said, "pretty good" and then went on to tell me that it was busy at first, then it died off, then it got busy again and then slowed down. I wondered how he did during the busy times and when I asked, he said he did fine. Go figure. Perhaps having the 2-3 weeks off was helpful for him. That and perhaps the increase in the clozaril helped. You just never know with this illness.

So, all in all things went well. I couldn't have asked for better as far as I am concerned. I feel like he really needs a break from all of the stress that work brings him and it turns out he sailed through his shift. I don't know when he works next but he should be back on the schedule regularly now.

With all of the anticipation of me being gone somewhere in the past now and with me not going anywhere else anytime soon, I'm hoping that he'll become more stable again. I say that with a knot in my gut because I just don't know what's coming down the pike next. Waiting for the next things is always torture. My hope is that we're looking at good times ahead for a while.

Friday, April 24, 2015

A Little Of This and A Little Of That


Just for laughs I thought I would include with this post the caricature that was done of me at the conference I attended. I don't think it looks like me but I like that he got my top I was wearing almost exactly right as far as coloring and design and he oh-so-kindly gave me a tiny waist. He gets kudos for that LOL.

I have been away from my blog for a few days for a couple of reasons. The first of which is that while I loved  the conference and learned a lot, it took a lot out of me mentally. I am not a social person at all and being thrown into a large group of very enthusiastic people was a bit much for my quiet personality. I found myself more often than not wanting to hide in my room but instead built my resolve over and over again and made myself get out and network. Needless to say, the time away from my quiet life coupled with all of the flying (it took me 13 hours to get home), I was completely spent and have spent the last few days hiding from the world trying to decompress. I'm back now and working on the next thing that has kept me away from my blog.

I learned a lot about the mechanics, analytics, popularity, etc. of my blog and I came away feeling like I am doing all of this for nothing. I know many of you read this and that it's probably many more than I think because most of you don't 'like' or comment on my posts for personal reasons but as a writer it's very hard to write for an invisible audience. I began this blog because I wanted to help people and lately because my numbers are low in my analytics, I don't feel like I am accomplishing much at all because there is little response to my posts and the other work I do. So, I have to decide what I want more in my endeavors; to keep doing what I'm doing or to change things in the hopes that I get more response. One such thing I am changing is that I am now posting my daily blog post to my website making it easier for you to comment because when you come here you can comment anonymously thereby being able to say what you need to say in response to what I am writing but you get to stay hidden from public view like so many of you need to do because of the stigma of this illness. I hope that this new format works and I hope you'll come here and read my posts here on my website and maybe even comment and tell your own stories.

Now, I'll tell you about how Thomas is doing and what he's been up to.

For the most part he has been doing pretty good. I think the fact that he didn't have to work while I was gone was a huge help for him. He does work tonight and he's already lamenting that so I don't know how he's going to do tonight. I fear that he is getting himself worked up and causing his anxiety and paranoia to increase when what he really needs to do is just look at this shift as just 5 hours of his life that is just a drop in the bucket compared to how much of his time is spent away from work. It's easy for me to say, though, because to me it's just an issue of time but I understand that he has other issues in play. If there are crowds, he will suffer. If he is tired, he will suffer. If he is anxious, he will suffer. His world is much more complicated than mine and things aren't as easy for him as they are for the rest of us. My hope, though, as always, is that he'll find his strength today and work won't be such a trial for him.

The other thing he's been dealing with is a touch of depression. I don't know what to make of that. Part of me wonders if it's the increase in the clozaril and part of me wonders if it's just a matter of coming down off of me being gone. He did wake up and shower the other day after a week of not showering so that's a good sign. I also took him with me on all of my errands yesterday and it seemed like that really perked him up to be out of the house and doing things. He is coming off of a setback and it'll take time to recuperate so we just have to wait it out, I suppose.

I realized this morning that it's Friday's With Tom today and he has yet to prepare something. Hopefully when he wakes up he will write but I can't say for sure. He was asked about quite a bit at the conference and already has a big following of his own and I told him how popular he was at the conference and that really seemed to build his confidence. I'm hoping he can parlay that confidence into feeling even more comfortable with writing. We'll see what happens with his post today but if it gets done, I will be sure to get it up for all of you to read.

Well, today is my 43rd birthday and I have no big plans for my day except to exercise this morning. Dan has been very sweet to me this morning calling me his "birthday girl" and that makes me happy. Perhaps that's just because I'm being called a "birthday girl". It makes me feel younger than I am. LOL I will continue today, though, to work on my blog and make the changes I want to make so that it's a better experience for all of you. Just give me a little time as I work to change things up. My hope is that the end result is something different than what it is now though I think the changes won't be to perceptible to you all. We shall see though.

Remember, since you are reading this on my website, at the bottom of this post you can comment and you can choose to be anonymous. I'd really like to hear from everyone especially right now since I've changed how I am posting (using my website instead of Facebook). I'm curious to see what you all think.

Tuesday, April 21, 2015

A New Season Of Sorts

After my trip to the conference and my trip to the ocean previous to that, I feel like I have been gone a long time. I think that sense of being gone obviously comes from the fact that I have literally been gone but I also feel like, in an unexplainable way, I have been gone from Thomas. I am thankful that for the most part he made it through me being gone to the conference but coming home has somehow started a new season of sorts. The feeling is ethereal so I don't quite know how to describe it but let me tell you what happened.

Yesterday I had an appointment with my own psychiatrist. Her office is 40 miles out of my town. I had asked Thomas the night before if he wanted to go and ultimately he decided not to go. So, I went and got my mom and she and I went up there. When we came back home I spent some time at her house eating snacks and talking. A ways into the talk I realized that I hadn't checked in with Thomas. I did and he said he was doing okay so I stayed a little longer before coming home. When I came home I told Thomas that Grandma was on her way over to pick me up and take me shopping with her and he asked me how long I'd be gone. I told him that it would be less than an hour and he asked me if when I got back, could I take him to the bank. I told him that of course I would and I headed out the door once again. As it turns out I was gone 2 hours and by the time I got home Thomas was obviously disturbed by something. We got in the car to go to the bank and we had a talk.

I asked him how he was doing and he said he felt "kind of depressed." I told him that I bet he felt a little sad that I had been gone for 4 days and then no sooner did I get home then I disappeared for another day. I said that that must have been a bummer for him. He said a sad, "yeah", and I reached over and put my hand on his leg and he grabbed my hand and held it. How could I have been so insensitive not thinking how my being gone for yet another day might affect him? He sounded so down and I felt terrible.

When we got home from the bank I sat down to watch some shows on the DVR and all of a sudden I stopped and looked at him over at his table playing on his computer. His hair was sticking out in 20 different directions and it was filthy. He looked downtrodden and depressed. I got his attention (he had headphones on and was doing things on his laptop) and I asked him if he had showered since we had come back from the ocean. He looked a little embarrassed and said that he hadn't. That meant he'd gone over a week without a shower! I asked him why he hadn't showered in a week and he said he "just didn't feel like it" and that he "was depressed". I gently told him that this was a sign of his illness, the inability to have the drive to take care of himself and he sadly agreed with me. I said,

"You know kiddo, this is a warning sign that your illness is taking over and you need to be aware of that. I'm worried that things are backsliding. Can you promise me that tomorrow you'll wake up and shower first thing?"

He said he would and I will see today if he does.

This is the season that I'm talking about, though. Somehow I've been gone from him, disconnected and blind to what's really going on. I have been so wrapped up in my own life and my own stress that I have stopped keeping an eye on him. Suddenly, now, like when the leaves change color in the fall, I am now seeing a tree with it's leaves lying below its branches on the ground. He had told me he was doing okay but the truth is, he hasn't been.

Not really.

So, today I will make a concerted effort to be home with him and perhaps find something to do with him. We have a few shows on the DVR that he and I like to watch together and maybe I'll pop some popcorn and have some quality time with him. I've been gone a long time and while it wasn't like he got stable again and then fell apart again, I was under the impression that things were better than they are. He is still unstable and he's struggling.

I am home now for the forseeable future and I will keep an eye on him again and make sure that I am here for him as much as I can be. I think I have missed him as much as he has missed me and it's time for us to reconnect and begin working back to a place of stability together.

Monday, April 20, 2015

#HealtheVoices15 My Takeaway

My conference HealtheVoices15 ended on a wonderful note but before I tell you about it, I want to thank @JanssenUS, Everyday Health, Caroline Pavis of Janssen and everyone else involved. You all gave me a once-in-a-lifetime opportunity to learn great things, to make new connections and to possess amazing tools to help me be a better blogger and advocate and most importantly a better person. Admittedly I am a bit tired from the busy days and nights but every minute was worth it to be able to come back home to my happy home, to Thomas, and to my work here back at my trusty computer.

Yesterday ended with a breakfast and wrap up that was quite a bit of fun. For now, I'll leave out some of my more personal good news to share about what yesterday was like and what the other days were like.

Breakfast was buffet style and Janssen made an effort to account for everyone's food preferences. Many people there had allergies and illnesses that made it impossible to eat meat or to have gluten in their diet among other things so food was organic and fresh. Janssen not only made breakfast delicious but they made the morning fun by providing a caricature artist (I'll post my picture later--it's pretty hilarious) and we got a chance to write on a massive decal stuck to a floor to ceiling window overlooking NYC in the shape of the HealtheVoices logo about what we took away from the conference. It was pretty fun. Then they had a massive piece of white paper where 3 video cameras were trained on it as another caricature artist drew my picture (as well as others from the conference) and wrote down my impressions of the conference and my mission with my blog. The premise of this whole thing is that they are going to put the creation of the board into a time lapse movie to be shown at some point and hopefully I'll be able to share it here when it's done. Both projects are beautifully done and will wrap up the conference in a fun way.

I was also interviewed in a televised question and answer session about my feelings about the conference and what I learned. One thing I definitely am NOT is a television "personality." I stumbled my way through the interview and I'm not sure how much usable footage they'll get from me. LOL

Saturday, though, was THE DAY. It was THE DAY to learn, to grow, to be educated, to be enlightened, to make friends and to network. They provided us with many speakers from many areas of interest like Compassion Fatigue (one of my favorites) taught by Dr. Brian Koffman and Kerri Sparling. Compassion Fatigue is the fatigue we feel as bloggers when we reach the point where we are exhausted from writing our blog and trying our very hardest to help our members cope with the various issues they bring to us. They taught us how to manage our own stress levels in the face of feeling helpless when it come to helping others and they provided great tools to be better advocates and compassionate blog owners. Much of what was taught there is also useful for all of you as caregivers and they gave tips that I will share with you over the coming days. I couldn't take notes fast enough so I took pictures of all of the slides and once I get those transcribed to writing I will share them with you.

They also had speaker ZDoggMD who I talked about in an earlier post. I said it already but for those of you who missed it, this guy is AMAZING! Not only is he a fantastic, dynamic speaker but his message was one of hope for all of us looking for good healthcare out here in the wilds. He satirizes the realities of healthcare on his YouTube channel (search ZDoggMD there) that has reached over a million hits. If you have the time you should go and watch some of his stuff. He's pretty spot on with his interpretations and he puts virtually everything to the popular songs of our day. I am forever a fan of his and encourage all of you to check him out in your spare time.
Then, for me as a blogger where the business side of blogging goes, we were taught by Tim Cigelske--Social Media Director and adjunct professor at Marquette University--how to read our analytics. Analytics are the statistics that Facebook and Twitter (among other platforms) provide us with to show us who our audience is, what our reach is, and various other little bits of useful information. This class was a little bit heartbreaking for me in a way because my analytics fall short in a few ways because while I have a lot of members on my page, the vast majority of you don't 'like', comment or share mostly for the reasons--as I understand it--that you don't want your family, friends, and loved ones with schizophrenia to see your activity on my page. In another class I was given some ideas to remedy that situation but they are projects that will take some time to come to fruition. I want to give EVERYONE HERE a voice and making that possible is a project that will take some time but I have great hope for the possibilities I have come up with.

The other business side covered was a legal discussion by legal and social media guru and super lawyer Jimmy Nguyen. He taught me a great deal about what I am doing RIGHT with my blog and what things I need to change for the sake of protecting myself legally. Some of my content (the use of pictures absconded from other areas of the internet for example) walks a fine line between "fair use" and outright "thievery". I'm not in danger of being sued for the most part but chances are there if I don't get my act together and do things by the book. I did learn, though, that generally I am okay doing what I do because my page is not commercial, isn't selling anything and what I write is my opinion and doesn't slander anyone in any way. My personal treatment of Thomas, of you as my members who allow me to share your stories and my keeping Thomas's doctors anonymous all protect me from any legal issues. All of that makes me very happy.

There were many others classes but those were the ones that I took something from and can apply to my page, my blog, and my website.

On the other side of all of this were the connections I made with bloggers from a comprehensive collection of healthcare issues. Through networking I learned a great deal about blogging, how to be more creative, how to engage my audience and how to be a better person. I will share via Twitter the people I most connected with and once I do that, their names will show up here in a separate post. If you're a Twitter fan, when you see that post, check out these people and their blogs. Some of them are amazing.

To conclude this post, I will say again what I have said before. JanssenUS provided a great resource for online healthcare bloggers, advocates and organizations. There is talk of them doing this all again next year and you can be sure I'll try to get myself in line to be chosen to go again. #HealtheVoices15 was the first conference of its kind and they want to make it a regular thing and hopefully include even more people from the online healthcare community.

Not to be lost under all of this is my boy, my kiddo, my Thomas. My plane got in late (after 10, after Thomas's usual bedtime) and when I walked in the door my beautiful, strong, amazing, loving young man was waiting right there to give me a hug. Needless to say, I grabbed him and HELD ON TIGHT. He fared rather well this time while I was gone and I credit, first, his great strength and tenacity but I also have to credit my mom, and Dan who both did their best to help Thomas through the time that I was gone. Also not to be lost under all of this was the much needed session with Dr. K. where he met my mom, provided her with all of his contact numbers (including his cell which I'm not sure he's ever personally given it to ME) and he spent time alone with Thomas helping him work out coping skills for while I was gone. Thomas's team was stellar this time around and I can't thank them all enough for keeping my boy stable while I was away.

(Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.)

Saturday, April 18, 2015

#HealtheVoices15--One Of My Favorite Speakers



#HealtheVoices15 Loved ZDoggMD 's talk about health care 3.0 where we take the 1.0 of the olden days where the doc/patient relationship was close but paternalistic to 2.0 where we as patients get lost in the system to finally health care 3.0--the nirvana of good healthcare--where the doc/patient relationship is equal and collaborative and where you don't spend a rushed 15 minutes of speed health care where you don't get heard and instead you get an hour or more of personal time where you do get heard. ZDoggMD is funny, insightful and spot on with what good health care looks like and he's put his vision into practice spectacularly. Thank you Dr. Zubin Damania for your funny and rockin' presentation.

("Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.)

Friday, April 17, 2015

Friday's With Tom--My Vacation


Hey guys, Tom here and welcome to my blog.

I recently got back from vacation to the Oregon Coast (Lincoln City to be exact) and we had a great time. But we didn't just stay at Lincoln City, no, we went to the neighboring towns and did other stuff as well.

We went to the Yacquina Lighthouse and took a look around. The inside of the lighthouse was fairly interesting but was expected; two rooms (one for sleeping in, my guess, and the other an extra for whatever else they needed) and a spiral staircase up to the top of the lighthouse. We didn't go up because the stairs were off limits to the public. While we were there I was watching the sea gulls gliding in the air above us and I said to my mom, “I wish I was a sea gull. Just to be around the ocean, letting the wind flow beneath my wings, overall just being free. There was also a set of stairs that led down a rocky beach. We went down because my mom wanted to look for agates but while we were down there, we took note of the super smooth rocks. I'm talking billiard ball smooth rocks. While we walked on the rocky beach, my dad pointed out the sound of the rocks as we walked on them. The sound was really cool, sorry I can't describe it.

The next day we went to Newport Beach, mostly to get the most amazing chocolate that you could ever have (unless you've been to Germany and Belgium). But while we were there we heard some seals barking so we went to check them out. They were occupying some docks that were laying in the water. One of the seals (it looked like) was nuzzling the back of another. It was the cutest thing I saw (other than my girlfriend) to date.

The next day after that we went to Tillamook, (we always go there when we're in town). My mom wanted a picture of me in this VW bus that had been cut in half and had the Tillamook logo. I was a little embarrassed but I had to indulge my mother. But the whole reason went to Tillamook was to have some ice cream, fresh ice cream. I had my usual favorite vanilla ice cream on a waffle cone. I don't care what you say, vanilla is delicious.

Overall the trip was great I had a relaxing time and I enjoyed it and I never really had any paranoid attacks while we were there.

That's it for today's post, I hope you enjoyed and as usual, stay beautiful

My Amazing Life Compliments of #HealtheVoices15


I don't even know where to start!

To begin with, it broke my heart to leave Thomas. He was extremely anxious and said he felt "empty" and it was completely heartbreaking to have to go. Fortunately he saw Dr. K. yesterday and got some counseling to get him through. I haven't talked to him yet today so I don't know how he's doing but I do know that my mom will spend some of the day with him and that will cushion the blow some.
As for me, spending yesterday stuck in a metal tube with wings for 6 hours was not my thing. Not at all. Several times I broke down in quiet tears on the plane as I thought about leaving Thomas and going to this strange land. I'm not going to lie, I was scared on so many levels. To leave Thomas, to leave the comfort of home in my small town, to fly across country alone, to stay in a hotel alone and to be thrown into a group of people I don't know at all...alone...all of it was terrifying. When I finally got into my hotel room I completely broke down and cried, called my mom and swore I'd never leave home again.

But then I freshened up and went to a nice dinner with my hostess from Janssen, Caroline Pavis, and a small group of other bloggers from many areas of health related issues. In that 2 hour time span as I listened to others tell their stories (they're not much different from the stories we schizophrenia caregivers tell) and I told my own, I found myself in a not-so-strange-land after all. I had taken my meds, though, so I was tired, not to mention I'd been up since 3 am, so I got my scrumptious dinner to go and stumbled up to my room. I was starved and I was tired. I couldn't get to bed fast enough!
Then...then I woke up this morning. I sat on my couch and looked out the window at the city and slowly my courage and confidence came back to me and I decided to go for a walk. Along the way I happily found a Starbucks and had a triple shot latte and I meandered down to the ferry dock and learned that I could take a ferry across the Hudson to the World Trade Center! It felt absolutely crazy as I contemplated going all by myself to NEW YORK CITY!

I came back to my room and got ready and texted Caroline and asked about breakfast and she told me Janssen would buy my breakfast so I went down to the restaurant and had breakfast alone. Now, before you think how sad that is that I ate alone, let me tell you that it wasn't at all. It was liberating! I sat at a table by the window with sweeping views of Manhattan and I ate some eggs and gagged down a kale and spinach smoothie LOL. It was horrible but healthy. Then I got up and headed out to catch the ferry to the city.

I cannot tell you how much my experience changed me. I went directly to the World Trade Center Memorial (pictured here) and I must have spent a half an hour or more just taking it in and reading the names of the lost souls from that fateful day on 9/11. I wandered all the way around the entire fountain and snapped pictures and took videos. I was enthralled!
After that I wandered the streets of the city and looked at memorials from 9/11 that, among other things, included actual missing persons pictures and messages from that day. They took my breath away!

Now I am back in my room on the same couch on which I cried last night and today I am a FOREVER CHANGED woman, my eyes dry now and wide open to the possibilities that await me as the HealtheVoices conference starts tonight with a cocktail hour with networking and a nice dinner in the Manhattan ballroom at the top of my hotel.

I cannot thank Caroline Pavis, Janssen, EverydayHealth and all of my hosts enough for giving me this most AMAZING opportunity. Unwittingly they have made it possible for me to realize my long time dream of seeing NYC and the World Trade Center Memorial and in addition have provided me with the opportunity to meet other amazing healthcare advocates from around the country and learn valuable things that I can take with me into the future as the author/owner of Understanding Schizophrenia. There are great things to come for this blog and for me as an advocate for Thomas, for schizophrenia, and for all of you. The future it bright and shiny. We all have something wonderful to look forward to. I hold in my hands great hope for a better future for schizophrenia advocacy and education.

(Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.)

Wednesday, April 15, 2015

One Day Away From ‪#‎HealtheVoices15‬

Some Of The Agenda And More

The time has finally arrived for me to tie up loose ends here at home, shore Thomas up for my departure, and gather my courage for a long flight, a very social event (that I'm a little nervous about) and a chance to learn so many things that will benefit all of you and also me as an online health advocate blogger. I wanted to share a little bit of the agenda with you so you can get an idea of what I'll be doing there.

First up will be a lecture by ZDoggMD (Dr. Rubin Damania) called "Meducating & Infotaining--Changing the Culture of Medicine Through Social Media:

(Description) Internationally renowned patient activist, Dr. Rubin Damania is revolutionizing the culture of medicine through the use of social media--eccentric, witty and dynamic; his YouTube channel alone has garnered over a million views. With a perfect blend of humanity, humor, and musical talent, ZDoggMD will inspire others to use their creativity and voice to change the future of healthcare together.

Then there will be another session called:

"Protecting Against Compassion Fatigue"

(Description) Session leaders Dr. Brian Koffman and Kerri Sparling are well-versed in compassion fatigue, an increasingly popular term that applies to emotional burnout of patient advocates, caregivers and even physicians. When leading a community, countless inquiries and comments make advocates struggle to be supportive, while also protecting their own emotional well being.
This is the one I am most excited about. I love my role as caregiver for Thomas and advocate not only for Thomas but for all of you too and learning some tools to use to help everyone will be a very valuable education for me. I will take from it everything that I can and I will be sharing that here with you in the hopes that what I learn will help you too.

There are more sessions about the business side of owning and running an online health advocacy blog and website and I am hoping with the tools they teach in these sessions that I will learn how to reach more people. (For my Facebook followers) My greatest disappointment lately has been that my reach is only just over 100 of you per post and that, to me, is a travesty because that means my message reaches VERY FEW people. I am at a loss as to how to reach more people and anything I can learn to make my reach greater will be very valuable to me. Seeing that my posts reach just over 100 of you is disheartening and without paying good money to Facebook to extend my reach, I am at the mercy of those of you who like, comment, and share my content. It is those of you who interact with my page that extend my reach. The more of you who interact with my posts, the more Facebook will release of those posts to more people. I think the formula for it is this:

For every 10 'likes' on a post that will help me reach 100 people. So if I have 100 'likes' per post, that means a thousand of you will see it.

I have over 5000 (bordering on 6000) page members and the vast majority of them are missing my posts. This fact really and truly breaks my heart. So, hopefully I will learn how to attract more of you to my posts so that the information gets out there further. I am not just talking solely about my personal blog posts but this also applies to graphics and articles I post. With Schizophrenia Awareness Week coming up in May, I am going to need all of you to get the facts and information out there that I create and post. I am working hard on making that week a very educational week but without all of you 'liking', commenting and sharing things, all of what I have done will be for nothing or very little.

So, all in all, the conference is going to be a fantastic learning experience for me and hopefully I will have a lot to share with you. Be sure to watch over the next 5 days to read about what I have learned. I will also be sharing how Thomas is coping while I'm gone. These next few days promise to be eventful and I am looking forward to it and looking forward to sharing.

(Now for the disclaimer from Janssen Global Services and myself: "Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.")

Tuesday, April 14, 2015

A Little Bit Of Luck, A Lot Of Stress Eliminated

I brought with me on vacation a letter from Medicaid telling me that I needed to establish something called a "Healthy Connections" doctor for Thomas. They stated that if he already had an ongoing physician that I could call and establish them as his Healthy Connections doctor. I brought the letter with me but made the executive decision to make vacation time actual vacation time and leave behind all of the stressors and save the call (among other things) until I got home. Well, I got home and waiting for me from Health and Welfare was a letter. I'll admit, I was still in vacation mode when I got home so I left the letter sitting on my chair unopened and prayed that it was something that I was going to be able to handle easily today.

I opened the letter this morning and in it it told me that they had already established his Healthy Connections doctor. I was HORRIFIED! Now what were we going to do? I just can't change Thomas's doctor on him since he's already got a trusted relationship with one. As I read further in the letter I discovered that the Healthy Connections doctor/clinic they had assigned to him was the very one he already is a part of!!! I couldn't have asked for better luck! Needless to say that is one less thing on my list of things to do in the next couple of days before I leave for the conference. Thank God. I do have to say that so far, things have gone along rather smoothly with all of this stuff with Social Security and Medicaid. I hate to be a pessimist, though, because I do have to wonder, "when is the other shoe going to drop?"

If this illness has taught me anything, it's that that proverbial shoe pretty much ALWAYS drops. It may be right away or it may be 3 months down the road but it's always there just waiting. I hate that shoe.

When we got home yesterday I was feeling pretty good about being home. I'm not always thrilled to come back to my life after vacation, I'll admit that. Sometimes I set foot in the back door and look at my kitchen and walk through my house and I feel the proverbial weight rest itself, once again, on my shoulders. I didn't feel that so much when I walked in the door but it wasn't long before it was back.
As I walked around the house and unpacked, Thomas began kind of following me around. He had already done his unpacking and I thought had settled in but, of course, that was not to be. I finally asked him how his brain was doing and he looked at me with THE LOOK in his eyes and he said that his "thoughts were racing around in his head." Uh oh, that's never good. What could be wrong already? We were home now and settling in.

As it turned out, Thomas wasn't settling in at all. HE was lost and didn't know what to do. This happens to him when he has no direction. His brain betrays him and fills him with confusion and that becomes a slippery slope. He had mentioned earlier that on vacation the WiFi hadn't been stable enough to play his favorite computer game, World Of Tanks, so he hadn't gotten a chance to play with all of his friends like he thought he'd be able to do. So, I suggested to him that now that he was home with the good WiFi that he should start up a game and see if he could get some friends to play. Luckily that gave him some purpose and he and his "racing thoughts" went to his room to play on his computer. Thank God!

This is what worries me about being gone, though. I'll be gone 4 full days, 3 of which he'll be completely on his own and what will happen to him when his racing thoughts attack and I'm not here to help calm them down? I'll be in classes all day Saturday, Thursday I'll be flying all day and Sunday I'll be doing the same. I won't be around, not even with texts, to help him out. Luckily he doesn't work at all while I'm gone but not working leaves him A LOT of time to himself to fend for himself. I don't know what to do.

So, we're home again, back to real life, back to reality, and back to a world where schizophrenia is alive and well. You can bet I'll be saying a lot of prayers over the next few days for my boy. My life is scheduled to the nines, his is wide open and filled with a lot of empty moments to be filled.

Monday, April 13, 2015

Goodbye Ocean, Hello Real Life

As I type this we are on the road home. This trip can easily be summed up as therapeutic for us all. I've seen some genuine joy in Thomas and virtually no signs of psychosis. I can never really know where his mind really is but I have not heard anything that concerns me in comments he makes. As we return home and back to real life it will be a trial by fire to some degree because I'll be home just 2 days before leaving again for four days. Thomas has expressed some concern for his mental health when it comes to me being gone but I pray he will sail through it.

As I type this, my fears about dying have subsided and I feel almost whole again. Just like I hope Thomas stays well I hope the same for me. The conference sounds like it's going to be one of the best experiences of my life. Just being on my own, totally alone, will be an experience for me that I haven't had in a long time. The last time I stayed alone away from home was when Thomas was hospitalized the second time. THAT was no vacation and my takeaway from it was the tragic diagnosis of schizophrenia in my young son. My hope is that my takeaway from this trip is a lot of useful knowledge and a change in my thinking. I also hope to meet many people from many walks of life. The conference guests are from all areas of online health advocacy from schizophrenia to oncology to HIV/Aids and so on. One thing we will all have in common is that we are caregivers. I look forward to learning how others cope in their various caregiving situations. I suspect we all suffer the same anguish but also the same triumphs. I will share with you all the experiences of others that I can. I know that I can say for myself that I feel isolated as a caregiver for someone with schizophrenia because, well, it's schizophrenia, we're kind of an isolated bunch in that schizophrenia is a mental illness as well as a physical ailment. I feel like there are far fewer of us in the world than say, cancer caregivers for example. The more prominent the illness the more resources there are out there for caregivers and sufferers alike. Perhaps I'll learn from others some way to be better at what I do and perhaps how to provide resources for others in our same situation.

We'll, my cell service is spotty so I feel like I need to get this posted before I lose it all to the ether. Real life awaits my family just 8 hours from now. Here's hoping this trip has strengthened us for the future.

Sunday, April 12, 2015

Say Cheese!!



Okay, Thomas is to be commended for indulging me and letting me take this photo. We went on a fantastic sight seeing adventure yesterday that ended in the town of Tillamook. As a family we walked a beautiful beach, climbed some sand dunes (whew! That's a lot of work!) And we hiked out to a cape overlooking the ocean. The view there was absolutely beautiful! Once in Tillamook (a cheese factory) it is tradition to get a waffle cone filled with our favorite ice cream and I told Thomas he had to pose in the "cheese van" before he could get any ice cream. He was a champ and got right in and let me take the picture. He even smiled as you can see!

Today is our last day of vacation and I don't know what we're going to do to wind it up. Something dislodged these rather curious creatures from somewhere out in the ocean and the are spread all down the beach in a line about 6 feet wide making walking on the beach a chore. I don't want to step on the poor things even though I think they are already dead. Currently Thomas is playing his new video game that he got and Dan and I are having coffee after a long walk through the hilly neighborhoods of this town. Dan and I went to the casino last night and lost the little bit of money we invested in the slots. It was Saturday night at the casino which usually means they tighten up the machines and make it harder to win. Thankfully we had the good sense to walk away before we had to put the car title up for collateral.


We'll be home tomorrow and back to real life and then 2 days later I'll be going to my conference. I got the itinerary for the conference classes and it looks very interesting. An entire half a day is about care giving so I look forward to that class and to sharing its contents with you all. When I read its description I teared up a bit because it seems to be just what we all need.

I'll post a couple more pictures today just to show you the places we've been.

More later...

Saturday, April 11, 2015

Pictures From The Ocean Trip

This is a picture of "my boys", Dan and Thomas, on a hike to Cape Lookout in Oregon
 
 

Thomas and I on the beach at Cape Kiwanda, Oregon
 
 

Thomas on the beach after climbing sand dunes to discover this beautiful place.

One Of His Favorite Things


Pictured here is Thomas doing the thing he most loves to do. Feeding the seagulls popcorn. For as along as I can remember when we went to the beach this was the thing he most likes to do. In the afternoon he headed down to the beach and from my balcony I snapped pictures of him feeding the seagulls. As he walked back up the hill to our condo he looked up at me standing in the window and waved and smiled a big ...smile. I committed that moment to memory for the times when things get rough. I continue to relish every moment I can with Thomas on this trip.

Yesterday was a much more low-key day because I wasn't feeling terrific for some reason. The highlight of the day came with Dan and I going to the casino and having a lot of fun. Before leaving I told Thomas I would put $20 in a slot machine for him and see if I could win him anything. He told me as I was leaving that if I reached $100 that he wanted me to cash out. Honestly I didn't think I'd make that much money off of $20. I went to my favorite slot machine that has these cute penguins that do cute little dances when you win and they do random things that even when you don't spin anything and win, the machine turns darker and dollar signs sparkle and penguins come out and do different things and gives you wins. It's great fun!

Well I ran Thomas's $20 down to less than $5 and suddenly the machine started winning like crazy. When we broke $100 at $105.50, I cashed out and was so excited to bring it home to Thomas. Dan and I continued to play with some secret money I had stashed in a secret pocket in my wallet and won over $400 on that same machine. When we came home I acted nonchalant around Thomas and he didn't even ask how we'd done so it gave me a chance to get his money from my purse. I handed it to him with the $100 bill under a $5 dollar bill and laid a 50 cent piece on top of it and bless his heart he was so excited about the 50 cent piece. That's when Dan told him to look at his bills and he moved that $5 and looked under it and saw the $100 and was so excited! He immediately went and put it in his wallet. I don't know what he'll buy with it.

Over all and in spite of feeling sick, we, as a family, had another good day. As usual I don't know what's in store for our day but I'm thinking we might go up the coast to the Tillamook cheese factory and have a big ice cream cone and then sight see. Whatever we do, I will keep you posted.
I'm so glad so many of you liked Thomas's post yesterday. Your comments were wonderful and they will make him happy. I will have him read them all today and comment back.

Have a good day! More later....

Friday, April 10, 2015

Friday's With Tom--My Advice To Young People With Schizophrenia


Hello there, I'm Tom and this is “Friday's with Tom.”

Today I wanted to give some advice to those other young “whipper snappers” on living with schizophrenia.

I'll start with auditory hallucinations since that's what I suffer (mostly) from. When I first started hearing the voices I didn't really know what to think. I honestly thought everyone heard them. As I grew up with them I slowly started to become a little irritated with them because I could be talking to someone and the voice would start talking over the person I was talking to. Now-a-days the meds I'm on keep the voices down but I also improved on my listening skills, now I can have an entire conversation without needing the person to restate what they say, that often. If I could talk to my voices I would want to say, “please shut up, I'm trying to have a conversation here.”

Now to visual hallucinations, I've had maybe one to two visual hallucinations happen in my life. When I was young (probably around 8-13 years of age) I would see a shadow figure move across the floor in the basement out of the corner of my eye when I would walk up the stairs. Back at the time it scared me to death because I thought my life was in danger by this shadow figure. The other one (which is more recent, probably since I was 18) I've had was a friend who fake threw something at me. Let me explain; he wouldn't have anything in his hand and would act like he threw something at me. Well at the time I swear he threw a grey ball with a white star on it at me. In the end we both laughed at it and went on to other things. But to my recollection, those are the two major hallucinations I've had my entire life.

Now for the paranoia, my biggest paranoid thoughts were that the government would come after me because of my political beliefs. This is usually worsened with anxiety and most of my anxiety centers around going to work so the thoughts get worse as the day goes on but they eventually die down once I've been at work for about 2 hours.

My advice to those of you who are young and just starting to experience your hallucinations or paranoid thoughts, communicate with loved ones and your therapist/doctors, they are a lot of help and won't judge you, trust me and those that love and want to help you.

One thing I wish I had known about schizophrenia is that it would lead to cognitive deficits (which I believe I've covered in a previous post). It disappoints me to know that my ability to think is lowered as I age. But don't let that scare you. If I would have known that I was going to have schizophrenia I would have prepared for the hard times I've had (loud voices, fear of the government, etc.). I've learned to accept schizophrenia though. I've learned that when it comes to my job, it will have its disheartening times, filled with anxiety and paranoia.

I've told my girlfriend that I have schizophrenia and thankfully that hasn't come between me and her, we've been together for almost two happy years and she has accepted me for who I am. And that one girl/boy is out there for you, you just have to be patient.

Well that's it for today's, Friday's with Tom, I hope you enjoyed and I hope to talk to you again, sorry for its lateness, I've been hanging out with friends a lot lately, hopefully you guys and gals understand. As always, stay beautiful.

(The picture on this post is of my Sonic the hedgehog fan-character. I recently drew him with glasses and this was the result.)

"If I Was A Bird I Would Want To Be One At The Ocean Because I Could Spread My Wings And Just Soar In The Wind."

I put that quote in as the title to the post because that is what Thomas said yesterday as we stood on a cliff looking at the ocean. Yesterday was truly a wonderful day for our family.

First we went shopping at the designer outlet stores here in Lincoln City. Thomas hunted furiously for some new shoes and I was surprised that he chose to look for dark gray ones. All of his life he has worn pure white shoes and nothing else so him wanting to wear dark gray was surprising. He's also back into baseball caps and searched for one he liked and couldn't find one that fit him. So for him it wasn't a lucrative shopping day but he VERY SWEETLY indulged me by going in the stores I wanted to and as I looked at clothes he would give me his opinions on things I picked up saying "I think you would look pretty in that." You have to understand that he's never voiced his opinion before when it came to my appearance. I'm not sure what's changed in him but I love that he's finally speaking up. I told him that someday he will be shopping with his girlfriend and he will be such a good partner to her by making her feel good about herself and her choices in clothing. He's really changing lately in many facets of his life where etiquette in relationships is concerned and I am very proud of him.

Next we drove down the coast and stopped at various view points along the way. We stopped in a small town and hit the saltwater taffy store and he did a great job and exercised self control in filling his bag with taffy. Usually he buys a ton but this time I asked him to keep it under control and he did. He was happy as a clam as we got back in the car and he broke into the bag and ate a few pieces.
Next we stopped at a lighthouse which was so much fun. We were able to go in the building and peer up the spiral stairs to the top. It was very cool. Then we went outside and just as he has done since he was very little, he asked for 2 quarters and put them in the telescope and he looked out into the ocean and told us all about a fishing boat he saw (pictured here).




Then we went down 8 flights of stairs down to the beach and he and I looked for shells, seaglass and agates. The beach was pure black rock so we found very little. Pictured here is Thomas on a big rock.



I was impressed at his bravery as he jumped over some small waves over to the rock and stood atop it like a king. He's so free on this trip actually really LIVING it and doing everything there is to do. Afterwards he and I ran up the stairs for exercise. He's not in the best shape but I was impressed how fast he got up them. We all (Dan included)stood at the top and tried to catch our breath. The whole lighthouse park experience was so much fun and more than anything, for me, it was wonderful seeing Thomas so unencumbered by anything.

The rest of the day consisted of wandering cute shops in a bayside town and eating dinner at our favorite seafood restaurant.

Over all it was a perfect day. I couldn't have asked for more perfect quality time with Thomas. Vacations seems so good for him and his mental health and I'm glad this vacation came along when it did since previous to it he's been struggling so much.

I don't know what's on our agenda for today but hopefully we do something fun again. Today is Friday's With Tom and he has written a very good post for you guys. I even learned some things about him that I didn't know. I am so impressed with his candidness and unfettered willingness to share his life and his experiences with his illness with all of you. He wrote this post in response to someone's question about what advice he would give to other young people living with schizophrenia. His post is scheduled for 10a.m. PST so keep an eye out for it. He LOVES your comments on what he writes and tries to respond to every one that requires a response.

Have a good day everyone. More later...

Thursday, April 09, 2015

Morning On The Beach

 
 
It is a beautiful day on the Oregon Coast and this trip is off to a great start. We got to our room and Thomas immediately set up his new laptop and started playing games. He is so happy here for the most part which makes me happy. I didn't realize how much his mood and mental health was affecting me until we got here and things seemed to calm down for him and as such, I calmed down.

When we got... here our room wasn't ready so we headed over to the casino to their buffet and ate dinner. After dinner Thomas asked for his meds and I was struck with a tinge of sadness as he dumped them on a napkin and took each one, one by one. It's such a juxtaposition between the goodness of a vacation and the reality that we haven't escaped schizophrenia and that this illness is very much a part of him and all of us. It was just a moment of sadness and then the moment was gone.

Thomas loves the buffet and ate 3 pieces of chicken and 3 halves of canned peaches. He then headed for the dessert bar and got himself french vanilla cake. Usually he has soft serve ice cream with a copious amount of sprinkles but he said he didn't feel like having that. This was the first time, I think, ever in his life that he skipped it. After dinner we went over to the slot machines. Dan has a knack for picking a machine, feeding money in and then spinning a spin or two and winning. As such he put in $5 and won $54. That was pretty cool. Then we walked around a little bit and I found a machine I liked and put my $5 in and on the second spin won $75. It was pretty fun and all of this made Thomas so happy too. I promised him I'd set aside $20 with his name on it and see if I could win him anything. He is now eagerly awaiting HIS winnings.

As for today, I don't know what's in store for us. As you can see by the picture, it's a beautiful day so no doubt we'll spend a little time on the beach. All of us just really need some time to relax.

Okay, I am going to drink some coffee now and enjoy the morning and the view. I'm thinking of you all and wishing we could all be here together experiencing this so we could all relax and decompress. I'll keep you posted on things and will put up lots of pictures for you all.

I hope you all have a good day as much as is possible.

More later....

Tuesday, April 07, 2015

The "Thomas Whisperer"

I don't know if you are familiar with the story "The Horse Whisperer" about a man that had a very wonderful gift of being able to tame wild horses. I am writing using that theme today because the most incredible thing happened at Dr. N.'s yesterday.

Normally I don't go in to the beginning of session because I like to let the two of them talk before I come in with all of my thoughts and opinions. I like seeing if Thomas can articulate what he struggles with without me there. I want him to be in touch with his own thoughts and feelings (he struggles with doing that) and I think the best way for him to do that is to fight it out alone in session with Dr. N.. Yesterday, though, I was in there and kept my mouth shut and stared out the window but I listened intently to what went down.

Dr. N. has earned a new respect from me where Thomas is concerned. Thomas brought up his recent paranoia and Dr. N. began questioning him with the most in depth questions and then would listen and say "uh huh" and ask a follow up question. This went on like this for 15 minutes and I just listened in awe at how he was able to delve into Thomas's mind and find out information that I have never been able to get. I prided myself on being able to get Thomas to talk and now I realize that I have A LOT to learn. From all of his questioning we learned that Thomas needs a little more help than I thought. I went into this appointment personally not too keen on increasing meds and I wanted to support Thomas in what he chose to do but I soon learned that a meds increase is very much needed.

Dr. N. asked Thomas if he wanted to do anything with his meds and Thomas requested that his Buspar (for anxiety) be increased in the hopes that his anxiety would go away. Dr. N. didn't miss a beat and told Thomas that increasing the clozaril would be a wiser choice because increasing the Buspar would take a while for it to work on the anxiety and that the clozaril would start working right away. Now, I don't know if that's true or not but I felt Dr. N. went that direction because he felt Thomas needed an increase in the antipsychotic, not the anti anxiety med. After suggesting the clozaril increase, Dr. N. looked at me and asked me what I thought. I gave him "the look" and told him that I thought that was a good idea. I could tell Thomas wasn't crazy about the idea but after listening to the entire conversation I thought it was the best thing for him.

Afterwards we got in the car and Thomas was ANGRY. He started up his music and I tried to talk to him about stuff and he sat there in his seat sulking and when I asked him if he was mad he said that he was and that he "just wanted to listen to his music". The whole drive to his favorite restaurant my mind was racing trying to figure out if Thomas was going to go for the increase. After all, it's his body and mind. He said he didn't want the increase because it would make him sleepy and I tried to help him manage the increase by suggesting that he take it right before bed as opposed to with dinner earlier in the evening. My hope was that he wouldn't notice the sleepiness because he would be in bed when it hit. We drove along in silence, though, until we reached the restaurant. He ordered his food and we sat down. I really felt that I needed to explain why Dr. N. had chosen the clozaril to increase over the Buspar.

I explained to him that Buspar is for anxiety alone but the clozaril did double duty because it helps anxiety and it helps with the paranoid thoughts too. I told him that with my upcoming trip and with him already struggling with paranoia so much and having earlier admitted to me that he was worried his paranoia was going to be bad while I was gone, I thought that the clozaril increase was the best option. I asked him how he felt about what I said and he said,

"That helps me. I didn't understand why he wouldn't increase my Buspar but the increase in clozaril makes more sense now that you've explained it to me."

Thank God!!!

So, all was forgiven and we drove home two peas in a pod listening to music and talking. As the day wore on I came up with some different options for him to take his extra 50 mgs of clozaril. I told him that we should try to first take it at the normal time and see if he genuinely feels it makes him sleepier and I told him he could also try it with his morning meds and see if it wrecks his day or not. He was fine with taking it with his regular night meds and as Dan and I were going to bed I asked him how he was feeling. He says he felt more tired than usual. So tonight we will try something different.

Yesterday was quite the rollercoaster ride but in the end things turned out okay. I am hoping that the increase in clozaril will help Thomas but somehow I don't think it will. After listening to yesterday's conversation between Dr. N. and Thomas and hearing all of what Thomas is dealing with, it seems like he needs a bigger intervention than just 50mgs of clozaril. We shall see though. All we can do, yet again, is watch and wait.

Monday, April 06, 2015

Meds Day And The Easter Bunny

Today is "meds day" for both Thomas and I. For me, I don't know if there is much that can be done about my fear of dying. I don't think that there is a "fear of dying medication". As the time grows closer to me leaving for the conference it seems like the feeling is staying the same. I think it's the flying in an airplane that's getting to me. Luckily there have been no more flying mishaps reported in the news lately so that helps. This all makes me think about Thomas though and his fears and paranoia's. While I am diagnosed bipolar it seems like he and I have a lot in common. We may not worry about the same things but we both worry too much about things that don't need to be worried about.

As for Thomas's meds appointment, I don't know what's going to happen. Since he's been struggling lately I want to be sure that Dr. N. knows about those things but I'm not sure about how I feel about adding meds and going through all of the side effects all over again. I'll have to talk to Thomas today on the way to the appointment and see how he feels about adding something or increasing something. I kind of just want to wait it out and see what happens. He's been doing pretty good the last 2 or 3 days so I'm hoping that's a trend we can count on. Granted, he was scheduled to work this week but he was scheduled for Wednesday when we leave on our trip and he called his manager and told her he couldn't work Wednesday but volunteered for Sunday or Monday. She told him that she would just take him off this week's schedule altogether. That made him VERY happy and with our vacation coming in just 2 days, he is set up for nothing but goodness.

There is something else that is making him happy though. Yesterday was Easter and for the last couple of years I haven't made him an Easter basket but I have gotten him a little treat. This time it was a bag of white chocolate Easter eggs and a note about how the Easter bunny wanted him to have these chocolates and that there was another surprise waiting. He knows there is no such thing as the Easter bunny but I still like to have fun with him about it. The surprise, however, was that I wanted to take him shopping for a new laptop computer. Between his savings and some money he has hidden he has a little bit to subsidize the laptop and I thought we could use a little bit of his SSI back pay to help pay for it (I think that's okay). I also have a little bit of my own money tucked away and I want to help him get a laptop that's worthy of doing some light gaming on it. I wanted him to have the laptop for vacation because Dan and I are planning a couple nights out at the casino and I wanted Thomas to feel like he's got something to pass the time. He had a laptop that Dan and I bought him years ago but it barely fires up anymore so he needs one that works. He spends a lot of time out of his room and by me in the living room lately so having a laptop instead of a tablet would be wonderful for him. So, the prospect of a laptop is helping his mood a great deal. I just wish that I could bring him happiness and stability by something simpler like a hug. Life would be so much easier.

Well, it's snowing up where we're going to Dr. N.'s so I have to go get ready now. It's going to be a much slower drive today. I'd really like to keep the car on the road. I do want to respond to those of you who weighed in on whether or not I should let Thomas's girlfriend read the blog and I took all of your thoughts into account and I agree with just about everyone. I think she is much too sensitive to be reading it every day. When Thomas was hospitalized, she and I would speak daily, sometimes more, about how Thomas was doing and she worried so much about him. She seems strong in that she's very supportive of Thomas when he's in an episode but I think it worries her a great deal too. While Thomas knows I blog and he knows I talk about him, I don't think he realizes that I talk so much about my own feelings and as such I think having his girlfriend read THOSE things isn't a good idea. I worry that she'll pass those things on to Thomas and cause him even more grief. Generally I work through most of my feelings and while I can move on, I don't think Thomas could. My worries about dying lately are a good example. I think he worries enough about me being gone on the trip or wherever but if he thinks I think I'm going to die I'm afraid he's going to take that on and I just don't want him worrying about that stuff. So, it's a no go on letting his girlfriend read this though I can't really stop her if she ends up finding it herself. I just really hope that she doesn't.

Okay, I really have to run now. I'm going to save Thomas's Friday's With Tom post for Friday and just schedule it to post that day. I'm sorry we missed the last one but he was having so much fun with friends that I wanted that more for him than writing for the blog. I need to keep him social as much as possible. So, be sure to be watching for his Friday post.

Have a good day everyone!

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