Saturday, July 27, 2013

A New Paradigm

If you've been following this blog, you may have guessed that even as I am well enough to write again after a long hiatus, I'm now completely occupied with taking care of my elderly father.  In my last post, I talked about his recent hospital stay and how we now have to manage his condition of heart failure.  His health took a sudden turn and we found out that he was in a-fib.  He's home with my mother and me now, but he needs constant care.  Without going into the nitty-gritty of his personal struggles, I will say he is very weak and nothing is the same for us anymore.

Where I can find a nugget of inspiration through all this is in the joy that I have that I am stable enough to take my turn helping my Dad, as he has helped me through my whole life.  One of my own challenges over the years has been that I have felt as though I had nothing to contribute to - and by that I specifically mean my inability to cope with stress.  I felt useless without working or even volunteering or doing something to "give back."  I know that this blog is an attempt to be relevant and help others if I can, but it's not the same as being involved in something with someone face-to-face.  I am so happy to be a support for my Dad as he goes through his own life transition, now.  Just being here for him is it's own reward.

I started off this blog post explaining that I've been basically too busy to blog as often as I would like to be blogging, but obviously, some things have to give.  However, I do have a little time this morning to write and I want to share my take-away from this past week. When you are challenged with mental illness and find yourself in a position of care-taking, it's vital that you continue to take good care of yourself and know your limits.  This can be hard to accomplish as you may feel yourself pulled in too many directions. When we first brought Dad home and were trying to establish a new schedule for him, I know that I was feeling a bit manic from the stress and my psychosis (hearing voices) has been much more pronounced.

Over the course of the week though, I began to get myself together so that my own personal schedule fit into my care-taking schedule.  I actually organized all of Dad's medical info into a binder and started to work with Mom to coordinate how we could help Dad in "shifts" so that we both get breaks.  I scheduled more appointments with my therapist.  I'm making sure that I am eating healthy, getting exercise and resting as I can.  I'm not saying this is easy for me, though, and that's my point.  If you are mentally-ill and are taking care of a child, someone elderly or sick it's just so much more difficult and you need to focus on maintaining your own wellness at the same time.

I will continue to blog when I can, especially about how I am coping with my schizoaffective disorder and staying sober during this life-changing period, so please do come back here and check for new posts!

Saturday, July 20, 2013

Blow to the Psyche

So, just as I was getting back on my feet again (and getting back in my groove with this blog) my Dad became seriously ill.  This past Monday my Mom and I took him to the doctor because he was having trouble breathing.  I was out in the waiting room when my Mom came to find me to tell him that he had to be taken by ambulance directly to the hospital because an EKG showed that he was in a-fib. I don't know to explain my feeling - I wasn't surprised, yet I was in shock.  I had observed that he hadn't really been doing well for some days and he seemed really weak, but still, I wasn't prepared to actually find out that he has serious heart problems.

Now, my happy place in my mind here is, ironically, that in that last sentence I could still use the present tense and say "has" serious heart problems. In the ER they were able to rule out a pulmonary embolism and he was admitted to the coronary care unit.  It turns out the Dad is now in constant a-fib, and he had to have some help getting rid of some fluid around his lungs and restoring his breathing to normal. But he's doing better now and actually came home yesterday.  Now, we'll have to manage with medications to maintain his stability despite the a-fib.

What has changed for me is that I had really gotten to a point where I saw my Dad as semi-immortal.  He's 92, almost 93, and this is the his first major hospitalization.  Up until now he's been in amazingly good health with no major problems. That has all changed in the course of one week.  I realize that I'm still numb because I never even cried.  I know that with schizophrenia, it's typical to dissociate from pain.  I was a bit on the manic side this past week, too. With less sleep and heightened stress that's no surprise either.  But I really thought that MY Dad was going to be the oldest person on Earth some day and now I have to face the fact that he is actually elderly and becoming more frail. I can't tell you how I feel because I'm intellectualizing everything right now.

I would say that I managed the crisis part pretty well and now there's little time to think because there are so many adjustments to our daily lives.  My family is holding together strongly and Dad is just grateful for our ongoing care and support.  But my paradigm has shifted and I know that I will never be the same again - because he won't be.

Sunday, July 14, 2013

The Ongoing Med Saga

I need to start this post with a disclaimer that I am not here to promote or criticize any particular medications. Mental illness is still a mystery of brain functioning. No one has all the answers and all psych meds are the result of theories about how brain chemistry affects people.  But why I would start to fill in the gap in my blogging with the story of my med changes is because they provide the backdrop, a kind of infrastructure, to my thoughts and behaviors.  Besides, if you've ever been in a psych ward or group therapy, you know that after "what's your diagnosis?" the next questions tend to be about what meds you're taking.  Why? Because we're all trying to understand what works and doesn't work and we get ideas from each other. The important thing we all know is that meds work completely differently for different people.  Each "med cocktail" is an experiment crafted for a unique psyche. So, it's important for me to share my recent experiences with various medications, but please know this is just one story and NOT an overall assessment of the meds I'm about to mention.

Now that hindsight has given me some perspective I can see that the events that preceded my breakdown really started last fall.  One of the meds I was on, Haldol, which is an older drug, started causing me problems.  It is known for causing a side-effect called tardive dyskinesia, which basically means involuntary muscle spasms, especially in the face. If not caught early enough, the condition can become permanent. Well, my face spasmed a few times and I freaked out - catching it early was not a problem for me! So, of course my psychiatrist took me off it.

I made it a few weeks before I started to get a bit manic and delusional, so the next step was another med change.  This is where I think things fell apart.  Within about a month, my doctor and I decided to both reduce me from 40mg of Abilify to 30mg of Abilify and add Invega (both are newer anti-psychotics) AND to switch me from Valium to Klonapin.  The only thing that stayed consistent was Prozac, which works well for me. A few problems with this course of treatment are now evident.  It was the first time I'd been on less than 40mg of Abilify for 4 years.  Invega is a cousin of Risperdol, which I had tried before and didn't like the side-effects, so it was no surprise that Invega also caused me to have serious side-effects.  Also, it was just a lot of change to adjust to all at once.

The Risperdol / Invega family is just not for me.  I tried to handle it for about three months because the side-effects were like having a flu, and it was winter, so we weren't sure what to think.  I even went to a gastrointerologist over stomach pains only to become convinced that it was, in fact, all about the Invega. So, my doctor took me off of that and I improved.  But she decided with me to take a chance on replacing it with Depakote ER (extended release).  I feel like I should have known better than to try that, too, because years ago I was on standard Depakote and it really increased my appetite and caused significant water weight gain.  I did start to write about Depakote as a mood stabilizer earlier in this blog and now I can tell you that the result was another failed experiment.  But it wasn't clear to me that the Depakote wasn't working until I was in the hospital and they increased my dosage.  Basically, I was lethargic, sleeping like 12 hours a day on average, I had no energy and my appetite was ravenous.  My doctor weaned me off of the Depakote and I was finally off it altogether two weeks ago.

Just this week though, things finally seem to have gotten stable.  Without the Invega or Depakote the lower dose of Abilify just wasn't enough.  The voices were becoming pervasive and I was losing my grip on reality, becoming paranoid and delusional.  My doctor got me in right away and we decided to put me back on 40mg of Abilify.  Within days the voices had receded and I started this blog again!  I have been a big fan of Abilify, for me, from the start, but now I'm convinced that it's my mainstay for sanity.  I've also done better with the Klonapin than the Valium, so that has stayed.

My med history necessarily forms the backbone of my story.  Truly, I hate changing meds, but it's the only way to find out what works, and yet, it effects your entire life.  Now, my doctor is suggesting the Abilify monthly injection.  I will investigate it on principle, but my gut reaction is, "if it's not broke don't fix it!" Anyhow, I'll do some research and let you know here what I find. I'm really hesitant to switch again, so we'll see.

Saturday, July 13, 2013

Where happened to this blogger's blogging for so long?

What did happen to me for so long?  I wish I knew how to explain it.  In fact, it's because I didn't know how to explain what happened that it has taken me even longer to write.  Finally, today, I realized that I could write again because all I needed to say is that I feel very hesitant to try to explain what happened.

Technically, you would say that I had another breakdown.  After all I'd written, why did I have such a hard time just stating that?  The best way I can say it is that I had seen myself as 'beyond' being that sick somehow.  I thought that I was writing as someone who was recovering from mental illness in a way that meant that the worst was behind me.  In retrospect, I think that my blogging was something of a cry for help. I mean, knowing now that I was headed for a breakdown, I can see that I was getting introspective and reaching out for answers.

I notice that I stopped writing at the end of April and I had just managed to avoid going off on a "bender."   I was lucky there, but I was still just about to round the bend.  I thought that my birthday at the beginning of May would cheer me up.  I even got my own domain name as a gift ( - how's that for "product placement?" LOL) and I thought I'd get back to writing as soon as...  And then I ended up in the hospital for 8 days.

How do I even explain why?  I truly am humbled by facing this unknown.  I could give you the "reasons" that I didn't think that I was okay, and why the doctors agreed, but now that seems so surface.  Basically, I had gotten delusional and despondent and no one thought that I could be considered "safe" outside the hospital. Sure, that's why they put you in there.  But on a deeper level I had to acknowledge once again that I'm never going to be "done" "recovering" - I will always be surviving this illness.  I had to face my own mortality again and admit to myself that I have no great wisdom about mental illness, I merely have perspective.

Having said that, I hope to be able to pick up where I left off here and bring up some of the thoughts that I've had in the last couple of months.  I'm finally in a better mental space again, and I'm ultimately grateful to my family, friends and all the professionals who helped me through my latest struggles.  I hope that you will continue / start this journey with me!