Giving Thanks, 2020

Man, what a dark year.

I started off 2020 with a broken humerus and that sucked, let me tell you. It was so debilitating and painful. I think I was starting to get hooked on opioids I was on them so long. I tried natural healing for five months. At month three the surgeon and I knew I needed surgery and then COVID-19 restrictions hit and the hospital shut down and my appointment for x-ray was cancelled. I had to go another month before surgery and once I had surgery at five months, I started to do better almost immediately. February was the worst, though. It was so cold and dark outside and I just went to a dark place. 

I also bought a townhouse.

After a lot of deliberation about buying, Mom and I moved in to the new home a week before Thanksgiving, so we’ve been here a year now. Just last month I rearranged the office, finally. I hadn’t settled in yet with the arm and all. Today I was able to put up a Christmas tree (last year we didn’t have one).

I lost two pets and gained one.

Both Fish, the little stray cat I found near death, and Sugar, my long-time dog friend, died this year. I hate to see pets leave. I’ve seen–seven–pets die in the past ten years. I don’t want anymore pets. This is it. I love animals so much and it hurts to see them go. People stay in your life a lot longer, but grief is just as bad for people as for pets.

I really miss my brother.

Moving to Iowa has been hard, mostly because I miss my brother Matt so much. I didn’t realize how much until I went back this summer to visit. We had a great time and spent a lot of hours just talking. We also got to go up in the mountains and fish. I don’t fish myself, but watching Matt reel in little and big guys is always fun. I grew up in the mountains, so having this time together was great. Brings back good memories. I also got to see this really neat rock formation that has tons of meaning for me, down along the Poudre River. I wasn’t expecting that, so it made it magical to see it when I was with Matt so I could show him.

Friends and family alike really saved me this year. I’ve been feeling so lost and isolated, being able to connect and reconnect has been so good for my spirit and my soul.

This year I am thankful for so much. It has been a rough year and I expect next year to be even better.

Happy Thanksgiving.

Giving Thanks, 2019

2019-11-26 13.09.12

My dog, Sugar, spotted an animal on our morning walk. At first I thought it was a squirrel, then I thought it may be a sick squirrel because it didn’t move, so we went to investigate. As I approached, I saw it was a kitten in a pile of leaves. He was sickly, cold and wet. When I picked him up, he started purring, so I brought him home. He wasn’t feral; I could tell by how lovey he was being. I fed him on the counter and set him on the floor and that’s when Sugar started nudging him, a little too hard. I decided to take him over to mom’s so he would be safe for the night. Mom has only one cat.

In the night he vomited, and that’s when we noticed he had worms. We called the vet and  got an appointment for the next day, a Tuesday. He was so sickly, though, I decided to bring him in to the veterinarian’s kennel for the night. The following day the vet called and said he had ear mites, parasites, and an upper respiratory infection. I decided to treat him and keep him at kennel for the week to keep our pets healthy and to finish packing for the big move (more on that later).

A week later, I picked him up from the vet. This is him now. He still has an infection, but he is doing a little better. I called today and ordered another course of antibiotics for him  since he spent last night breathing through his mouth because his little nose was so choked with snot. I took a rag to his little face to clean him up, and he was able to sleep a little better.

I don’t know what I would have done had I not been able to afford to care for him. I guess I could have dropped him off at the kennel and left him there, but to leave him outside would have been unthinkable. This week we got our first snow, and I know he wouldn’t have survived. The vet says he is at least a year old since all of his adult teeth are in, but you couldn’t tell by his size. Malnurishment has kept him as small as an average three-month old cat.

This Thanksgiving I have a new kitty, Fish (named after his nasty fish breath), and I am thankful that I have the means to take care of and home a lost pet today.

 

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.

 

 

 

 

The Holidays, 2017

Whelp, it is time to get on with the Holidays. This year finds me doing well. I thank my doctor, who has an amazing memory and a willingness to keep trying when in the face of  defeat. It is uncommon to have people to talk good about their psychiatrists; I can say I have encountered at least one doctor who was subpar (he was months away from retirement and — seriously — would never even look at while I was in his office). Anyway, my doctor is leaving the practice, so I get to meet a new doctor come January.

When my doctor, Dr. S., told me he was leaving the practice, I had to cry. With my short time sick, I’ve seen six practitioners in ten years (not to include hospital stays). Not a large number to some, but a larger number than I would like. It has to do with insurance and availability and “the system”. My doctor got me on Disability with his copious notes and keen observations. This, I feel, kept me safe and stable in my living arrangements, which goes a long way toward being safe and stable overall. I had a psychotic break as recently as January of this year. It takes forever for the illness to go away, and for me to be feeling normal again (finally!). What a relief.

I asked what kicks off psychosis, what can I expect? I think it boils down to a crap shoot, because they really don’t know what causes it, and I think it is because they like us being sick and on medicine. If just one of those researchers could feel what I go through, I think there would be more money spent on finding the cause and a cure. But the marginalized stay cast in shadows, alone, disenfranchised, and sometimes bereft of hope. I’ve felt that way.

Dr. S. is one of the “good guys,” always upbeat, positive, and ready to roll with the worst of it. I went to his office one day, crying. I blurted out that if I stayed that way, I would commit suicide — a fearful statement like this could easily land one in the hospital, but since he knew I was living with mom, and that mom had an eye on me, he let me go home with a new battery of meds. Now that’s a great psychiatrist: one who will let you vent safely so that he can get to the truth of the matter.

I am going to miss my doctor. Maybe he’ll land back in my world.

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).