A “Side Note”

After reading a friend’s blog about her struggle with cancer, I’ve decided I can get a little more “real” with my own blog and bring it down to the emotional level, instead of just staying analytical.

About ten years ago I was struck with what I call “Late Onset Schizophrenia.” I say what “I call this” is more about being educated by and about my own disease. I’ve carried all of the diagnostic labels in the group, including bi-polar with psychosis and schizoaffective because the word “schizophrenic” is so so widely misunderstood, misappropriated, and misused that even doctors don’t want to use the word now. The term “psychosis” is equally misunderstood and misused. Most people, it seems, associate the latter with getting really angry and being hostile and antagonistic. For most of us experiencing psychosis, it is usually about feeling terrorized, scared, and full of uncertainty and anxiety.

Anyway, I said I would stay away from the stump speeches and hit home instead.

I’ve had another break recently. There have been more than I can count now. This blog documents them all in some form or another. Sometimes I am so afraid of my psychotic reality I won’t write about it, but when I do write about what I am experiencing, I can really bring the experience to life. At least I think I can, reading months or years later. Those epic, in-your-face posts, however, are few and far between.

I’m scared and my mom told me the other day she is scared for me when she dies. Mom is dying of Stage-four Lung Cancer and I’ve been her primary support. I will be her only caregiver. Hearing this from my mom really shocked me, and I had to leave her place because I was so upset. I was upset because no one I know has yet to express any real concern for me and my life and how I am doing. Mom must keep her fears tightly capped because she has never told me as much before, even though we had been living together for a number of years until recently and she has really, now, seen the worst of it.

I hate to show it myself, my fears. I don’t know where I will turn when my mom dies. She has been the only one to see me and support me and care for me. Although we’ve had our differences through the years, my mom has been my sole support in my illness. My brothers are present to some extent, but they aren’t around enough to really understand what I am like when I am sick, nor how to help me. And, really, there is no way to help me and this is exactly what doctors, nurses, and the sick already know. There is no cure, there is no panacea. There is hardly any research to that matter. They keep making new drugs, but they’re not much better than the old stuff. For the few who are really lucky, a shot of risperidol or some other drug may help, but for me, only time helps, and in the mean time, I sit and suffer through my symptoms — and it really is suffering. I hate psychosis so much.

But to the degree I hate psychosis, I also love my mom, so I am going to make a concerted effort to really be there for her, to show her who I am as an individual — something a parent may not see, something half my lovers have not seen, something I keep tightly regulated now. I only dole out my love now for, well, no one.

Maybe it is time for me to love again, and I’ll hedge my bets on mom being a good start.

 

 

 

 

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2016 Brings Full Disability

After my harrowing adventures in Kansas (e.g., Three-fisted Punch) I spent the remainder of 2013 and most of 2014 experiencing psychotic break after psychotic break. I landed in the hospital in the Summer of 2014, when the cops were called because I was talking to myself on the street (well, I was really screaming to myself and the voices, making quite a scene). My break was complete this time, as I couldn’t stop talking to myself even in the presence of others. Hospital staff took note and I was oblivious. They started a Disability Application for me, and ushered me through the process as I sat unaware. I stayed for seven days, unconcerned. I’ve heard that the disability process here in the U.S. is quite long, where most of the time is simply spent waiting for your case to be heard by a judge, and I can verify this now through my own experience.

My case was finally heard in late March, with the Judge declaring in the hearing that she ruled my case, as they say, “Fully Favorable” since the date of onset – which was my November run-in with the Kansas State Troopers. It is from this date that the voices I had been hearing only during psychotic breaks has persisted even though the psychosis had ended. I have been trying a variety of meds thanks to my doctor, but none as of yet had impacted my auditory hallucinations. I’ve been out of work, also, since November 2013. It will take another two months before I am fully in the system, receiving payments.

Living with my mom now has helped more than I would have expected, and I enjoy the company after living so many years alone. Mom’s presence keeps me going to bed on time, eating three squares, and staying closer to home. I’m not sure why my writing has fallen away, but I suspect I’ll catch up here this summer with new tales of adventures and commentary on my condition and the Social Security system.

Thanks so much for following along.

Annnnnnnnnnd… I am back online!

So, these past two months my domain was down (unbeknownst to me) and I was psychotic (again) but I’m getting better answers now about why I keep tossing ill. WordPress was exceptionally helpful in my getting the domain registered again, so thank you WordPress!

By boring account, I was admitted to the hospital in mid-August, where I stayed for a week. During that time I’ve been signed up on government health care for the impoverished (Medicaid) and had to switch doctors. My last psychiatrist started thinking I may be bipolar instead of schizophrenic because of the odd nature of my recurrent psychosis and periods of full-functioning in contrast and the lack of correlation between my med compliance and recovery, or lack there of.

Current theory (since I had to get yet another doctor under Medicaid) is that I have Bipolar I with psychotic features which is to say, instead of being HIGH or super-productive, I just flip severe psychotic, blowing right past all the touted “benefits” of being bipolar. My cycle seems to be of the slower-cycling nature and, if I recall, the doc said this is harder to manage long-term. I’m now on a numerous meds to try and keep the next cycle from occurring, or to slow it down enough to catch. Not sure why catching it will help when the meds I’m on are supposed to prevent it altogether – isn’t that like saying we’ll use the meds you’re on to try to do the same thing? (That is to say, if it is prevented by the meds I am on, I won’t need to use the medications to bring me back down, and if the meds don’t stop the onset, we’ll use the same meds to try and squelch it.) Not being smug, but I’ll have to ask the doctor some more poignant questions, none of which I can ever think of at the time.

Since Thanksgiving 2013, I’ve gone psychotic three times, and if I count correctly, there’s been a total of nine cycles of destruction since the big block buster, two-year long psychosis I experience at onset.

The most frustrating aspect of this all is the stigma and the FALSE assumption that I must not be on meds if I am sick. Wrong on so many levels. To start, lots and lots of meds don’t work for people the first try, or even the second try. Second, that ONE TIME I was off meds doesn’t mean it’s my current behavior (truth be told, I was running my own experiment). Second, it doesn’t sound like this could have been better diagnosed. A pattern has to emerge, and, furthermore, there needs to be continuity of care.

My own experiment, eh? What’s that about?

In all sincerity, I thought I had this licked while–at the same time–I intuitively knew the meds weren’t working the way they should. Maybe it is better to say I thought it was over, that I was done with being schizophrenic. All of this, of course, is not ignorance or obstinacy, but denial. I just can’t admit to myself that this *may* be happening for the rest of my life. How do you plan for that? How do you plan on being totally incapacitated five to six months out of the year? You start buying a lot of art supplies, that’s what you do.

The continuity of care in our medical system leaves much to be desired. Initially I was on state-funded insurance, when I first became ill. When I became better and was able to work and get my own insurance, I had to move to a private doctor under private insurance. Even while on state care, my doctor changed several times. I finally found a private clinic with an associate Behavioral Health Unit hoping that someone would catch my symptoms and hospitalize me before something really really bad happened. Lucky shot there, for what resulted is that finally one clinic had notes for different events and they were finally able to see the full spectrum of behavior, from capable business woman to babbling fright. Although I changed doctors three times at the new clinic, they each read the prior doctor’s notes.

What has been helping also (and I am more than a little ashamed to say this) is that I’ve had my mom go with me to my appointments under the theory (more experimenting here) that the doctor would put more weight on what she said than on what I said, being a more-frequent observer of my condition. So, it helped.

And, while I say that, I’m banking on the new diagnosis and the fact I won’t go psychotic again (I know, denial) or that it won’t be quite as bad as last time (more denial).

Anniversary — Year Seven

Hearing voices again, though I am surely not in the condition I found myself last November. My last bought with psychosis was really hard core, where I was not only delusional and hallucinating, but I also found myself fainting and passing out in public on numerous occasions. After a battery of tests with cardiologists and a neurologist, nothing has been discovered to be the cause of whatever ailed me.

This run of hallucinations are much more mild, perhaps alleviated by the medications, but not altogether suppressed by them. I approach seven years with the onset of schizophrenia: so debilitating. I’ve quit two jobs in the past six months and am now faced with the hard fact that I may not be able to continue to work full-time with intermittent psychosis that lasts a month and takes yet another month from which to recover.

I was living in my Airstream when — again — this cycle hit. I moved back home where I am now living with my mother in a 450 square foot apartment. We’re slated to find larger accommodations this summer when another place becomes available. As I hate to admit it, I feel so much better having company and constant contact with people at home.

For the most part I find myself in good spirits except for when my cat, Daisy, leaps upon me in the morning with her hangry (hungry, angry) pleas for food. Here in America, doctors won’t dispense anti-anxiety medications as often as before. My once-daily dose 1 mg Ativan/Lorazapam has been revoked. Without any way to manage my anxiety, it does reach the higher limits occasionally. In those times, I try to remember Twitter, so I can focus my energy and attention on something different, but sadly it seems more than absurd that someone with diagnosed paranoia-symptom illness (which is more about feeling intense fear than suspicion) can’t get medications to treat the condition while older ladies I know get huge bottles of more potent medications to help them through menopause. Rush thee, Change of Life, along please!

I approach Year Seven with Schizophrenia, hopeful that things can change, but fearful there is no panacea that will take me back to where I once was.

Storm Prose

She sat dismayed, staring out the window, shadows cast from stars and steeples. Dismayed with November, and who was to say she would not remember gazing at the shades of Southern-facing slopes in the distance, dancing in the sky in the way only mountains sway, slopping and dipping, turning and finishing with a snap in the sky. The source of her dismay was not the dismal scent of stereophonic traffic, it was the stammering and stuttering laughter, a nervous twitter of excitement, her excitement at the candid expression.

2008

Five Tips for the Newly Diagnosed

I’m no doctor, but I can tell you what I did that I think helped me through my recovery. Granted, I have a couple of contributing factors that – as I am told – made my prognosis more positive than the outlook may be for others. This includes:

  • Late onset, at the age of 37
  • Being female
  • Rapid onset

With the plasticity of the mind, I think my age helped, since my brain knew more about being in a common experience. Also, females tend to have a better prognosis, overall. Finally, I am told that those with rapid onset also tend to recover better (not necessarily more quickly). My psychotic break was “Severe” by the four-point scale my doctor used (Mild, Moderate, Severe, and Very Severe). It took me well over a year, however, to suppress the worst symptoms through the use of medications.

I think getting sick as an adult also has advantages, because I approached my illness and recovery with a bit of experience that simply comes with life. When I hear about others struggling to get their symptoms under control, my heart go out to them. It is such a harrowing experience.

I hope these five tips help someone find peace sooner, rather than later.

Address the worst symptoms with your doctor

Only you know what is debilitating to you. Talk to your doctor about all of your symptoms, yes, but try to be clear on what is the worst. Is it the voices? The delusions? The ability to concentrate? They may not be the most prominent symptoms, but what feels the worst or makes you feel most debilitated is what you’ll want to get under control as soon as you can.

Be patient and consistent with medications

Now this is purely anecdotal, but from my experience, the medicine I was most patient with was the medication that provided the slightest relief to my worst symptoms, as described above. At first I measured my progress day by day as I began to feel a tiny bit better. I stuck with the medicine that provided me relief from the worst of it. As always, however, follow your doctor’s advice.

Concentrate

While the meds were still working their magic, I found relief in deep concentration. What exactly does that mean, however? I focused on putting all of my attention on one thing for as long as could. What I chose to do was taxes as a volunteer for the IRS through the VITA program. I spent eight hours a day, three days a week doing nothing but number crunching. (Don’t tell anyone I don’t think I did a very good job, and I couldn’t manage more than the 1040EZ.) I think the trick, however, was really engaging my mind. While I realize not everyone is interested in this type of work, I can think of a few other things that are similar, like detailed drawing, mechanical work such as rebuilding a carburetor, learning to play the guitar, etc. Find something that interests you and really engages your attention.

Learn how to use your PRNs

With your doctor, discuss what medications you have and how best to use them should you be experiencing a surge of symptoms. A PRN is a medication you can take “as needed” like anti-anxiety pills and even an extra dose of your anti-psychotic. Had I known I could have taken my anti-anxiety pill when I was most anxious, for example, instead of in the regularly scheduled a.m. and p.m., I think I would have been more comfortable in the early days. A good conversation about how to use your meds to your advantage will go a long way in managing symptoms.

Exercise

I know we know it… exercise is good for the body. It’s also good for the soul and the mind. In addition to helping you avoid the most common side-effect of medications (weight gain), exercise will help you sleep, which is the next best thing to meds that do their job.