Category Archives: Hospitals

Health Scare & Other Shenanigans

Well, I rang in the new year in the ER with pulmonary embolisms in both lungs. Turns out the shortness of breath I had been experiencing for weeks was neither allergies nor bronchitis, but blood clots. The ER and hospital stay experiences were anxiety-provoking whether it was getting blood from the same veins over and over, or hearing that You Have Blood Clots in Your Lungs! (And no one knows how I got them.)

From the anxiety and the very little sleep one gets in the hospital, to being in the ER and hospital at all and thereby reminded of all my psych hospitalization experiences, my mind was all over the place, though my mood remained stable (hallelujah!). I did, however, have the opportunity to evaluate and appreciate the facts that (1) I did want to live and (2) my body was trying hard to live – the survival instinct was hard at work. There have been so many times in my life when I wanted that survival instinct to just stop, and this time, I was grateful for it. Hallelujah again for more mental progress!

In the last month, even as I dealt with the shortness of breath, I also moved about an hour away, gave away about a third of what little I owned, and have spent lots of time alone and with my girlfriend despite her busy work schedule. I am acting more independently again, and my mood is still stable! It’s a strange experience, this stability, even in the face of so much change this last month. I am still waiting for the other shoe to drop and become unstable again. But I’m weathering life ok, and that is both a surprise and very welcome.

Not So Good Hospital

I really miss the hospital I used to go to in the Chicago suburbs, especially after this last one I stayed at. As you may have expected, I checked myself in as the mixed mood didn’t get better and I got closer and closer to hurting myself as the thoughts bore down on me. I took notes at this hospital because I couldn’t believe how bad my experience was.

In no particular order, and as only a partial list, here are the things that went wrong:

  • Food. The food was cold, poorly cooked, and mostly out of a can.
  • Lack of privacy in the bathrooms. Besides the bathrooms having no doors, the staff doing rounds found a way to always know when I was in there, need to mark down where I was for the every-quarter-hour rounds, and always look in and make eye contact while I was on the toilet or in the shower.
  • Uncaring night staff. The night nurses (7pm-7am) failed to learn any names, even when with you for several nights; and failed to ever do anything that could be “extra work” like look up if you can have melatonin even though I know the dr prescribed it because the day nurse looked it up for me.
  • Not sharing info. I saw a different nurse practitioner every day and no one had read notes about how I was doing from the previous day. Same with nurses between shifts and on different days, case managers, and therapists. I would be asked the same question multiple times a day, by different people, and no one checked the notes anywhere to see what I had said or what the dr had said (who only saw me for a grand total of 5 minutes between 2 visits and never took a history even of medicines I tried).
    Cleanliness questionable. Day room was mopped and trash emptied each shift, but all hand rails were sticky, the bathrooms were only swiffered daily and toilet/sink cleaned every other day, and I never saw the main halls actually cleaned, just swiffered. No wonder everyone upstairs shared a cold, and then it was brought downstairs and everyone went home with one.
    Crickets. In my bathroom, in my room, outside my room, and others had them too.
    Yelling. All day and most of the night from a dementia patient – did I mention I was on the geriatric floor? And others with intellectual disabilities yelled and spoke loud at all times of the day and night.
    Assault on the staff. By a person with dementia. Nothing done about it! She yelled violently at patients regularly too.
    Meds from home not approved. After the main nurse practitioner insisted I get meds from home for meds that were not on the hospital’s formulary (like Advair!) – that would have to be approved by pharmacy and then prescribed inhouse, a process that should take a couple hours, right? – I NEVER got them until I discharged, and then they didn’t give back one of them because they didn’t want me to take it anymore!!!! It was mine, prescribed by my regular doctor!
    ECT brought up. Multiple times, by multiple people. If you read my blog you’ll know why that scared and pissed me off!
    Sleep meds never ready. Even though they were prescribed, and I took what was in the formulary, the nurses never pulled my sleep meds to give me at night, and I would have to wait 20 minutes from the time I asked to the time I got them even when all they were doing was pulling my meds for me.
    Transfer to another hospital didn’t go through. I asked first thing the first morning to go back to the hospital that sent me cuz they had no beds the night before but did after discharges the next day. After getting the runaround about who to talk to, I kept on him all day and he finally came through – though no one else on the staff knew I was leaving. Sigh. Then the other hospital said I’d have to self-pay and that was too much money!
    Diapers. People just left in them for hours. Patients would tell staff about puddles or smells.
    Interns, and bad basic therapy. Every day I was there a therapy intern or a weekend-only staff person led the processing and education group. We would get 2 minutes to say what was on our mind, longer if we had a complaint and then they might jot something down. Super, super basic coping skills like deep breathing or the 10 cognitive distortions (just read off a sheet, not explained) were “taught,” and as someone who knows and practices them, they were not helpfully taught, explained, or they don’t work anyway.
    Intake, middle of the night. Imagine this. Been in a small room with just a couple chairs and a tv for 9 hours. During that time you had an hour-long intake covering everything possible. After several hours, you are told there are no beds and they will transfer you. Then more hours go by. And there is one bed available at a hospital without a good reputation, but legally (to cover their responsibility) they can’t just let you go under family’s care, or let you just sleep in the little room because you have reported intense feelings for suicide. More hours go by. An ambulance finally shows up to transport you to new hospital, sans sirens and lights. New hospital takes their sweet-ass time processing you – 4 more hours until 5:30am – and asks the Same Exact Questions even though your paperwork with all the answers was faxed over hours before you got there. Plus the people were rude!

Despite this and more, I remained model patient, taking meds, participating in groups (just 2 total to fill the day, sigh…), keeping patient, talking to and helping other patients. Just needed a restful place to feel safe and wait for the suicidal thoughts to wane.

Decisions, Decisions

I am living with anxiety: I have coping skills. I have reminders from my therapist. I have a benzo I take 3x/day.

My anxiety was at a 10 on Thursday morning as I met with the doc for the second opinion on ECT, and then with the regular team I see before ECT to talk about the anesthesia trauma and the unbearable anxiety I’m living with. Man, I used every possible coping skill that morning, and I still blubbered all over the place as I talked about what I’m living with.

Ultimately that morning, no final decision was made about ECT. I Did Not Have a treatment that morning. I did not schedule a treatment. I only agreed to talk about the future of ECT and me at a later time when I was calmer an in my own home, not staring at the ECT trappings that reminded me of bad experiences. So Monday I will talk with a person who understands where I am coming from – knowing both the benefits I’ve experienced and the trauma and anxiety I cannot live with.

I was told that there is a med I can take that would drastically reduce my anxiety the day of ECT. And there is something (not sure what – find out Monday) that can be done to prevent anesthesia problems.

I am in the driver’s seat, and I am left with a horrible decision: Do I trust the ECT team with the things they can now do to earn my trust back for smooth ECT experiences, even though they were not offered when I had talked about my experience and great anxiety BEFORE? OR do I stop all ECT, and possibly never do it again, choosing instead to play medication roulette again should my mood waver again or I get suicidal again?

Decisions, decisions. I will get more info Monday.

Self Care – Hospital and ECT

I was in the hospital the first three weeks of April after my last post. I took care of myself by going in the hospital to be kept safe from my suicidal impulses and to start ECT again. As a common meme says, “It’s ok to ask for help. It’s ok to start again. It’s ok to say no. It’s ok to rest. It’s ok to let go. It’s ok not to be ok.” Going in the hospital and starting ECT again was telling myself it’s ok not to be ok, and it’s ok to rest and to start over again.¬†Having had success with ECT at the end of 2018, my psychiatrist recommended a course of it again including maintenance to hopefully prevent a mood crash again after only a couple months of stability.

Now I am out of the hospital, adjusting to life without suicidal thoughts, and have had 13 treatments. My mood is holding steady between treatments and suicidal thoughts are drastically reduced. I can’t say I’m feeling as good as I had been after the last course of ECT. But I did¬†just go from ECT 3x/week to ECT 2x/week. I’m staying the course by keeping up treatments even though I don’t really want to do ECT. Something about it just weirds me out. But I really want the experience of feeling good for an extended period of time, and ECT seems to be the main treatment that leads there.

I continue talking with my therapist over the phone on Fridays. And my mom is my companion for ECT, driving into the city and then keeping watch over me as I recover. I’m able to reach out to these thick branches of my support system, as well as some smaller limbs too, as I try to feel not alone. I wish I felt good and strong and happy again, but at this point I at least have hope that it will happen again as ECT continues.

Suicidal Ideation

A clawing, gnawing at the inside of my breastbone. Tears behind my eyes, but not released. Anxiety creases in the forehead. A fluttering heartbeat to my left, blankness and emptiness of the soul to the right. I see how I will do it in my head, over and over and over.

I’m noticing everything in this moment. This is what I experience in my body Every.Bloody.Time I have suicidal ideation. Which is minimally every couple hours, and right now intensely every other minute. It interrupts reading, watching tv, even doing algebra this afternoon, and while in conversations.

I watched youtube videos of Steven Hays giving ted talks about psychological flexibility and putting the mental brakes on thoughts. He is one of the founders of Acceptance and Commitment Therapy (ACT which is the therapy that finally worked for me. I’ve been practicing it for years now. The reminders in the videos helped me a bit. Hours later I’m still using tips.

I tried something, and stopped because it hurt more than planned. I’m not going to do anything, yet I’m plagued by the sensations and thoughts I described. It’s miserable and horrible.

I don’t want to go to the hospital, nor do I think it would help. My mom, though not currently in a position to help, has hidden things I could use to hurt myself. This is as safe an environment as it could be, I guess.

I don’t think more ECT would help, though my mood feels like it dipped, and I find it easy to fall into old thought patterns besides the suicidal ideation. I had a long and emotional Friday and Saturday getting certified as a NAMI support group facilitator, something I’ve wanted to do for years! But it wore me out mentally and emotionally. Which could lead to a natural mood dip, which is why I think ECT would be overkill since the depression should lift after more rest (my hunch).

Several doctors and several therapists have come to independent ideas that I just have suicidal ideations as obsessive thoughts (OCD) and there isn’t anything that will stop them. If I didn’t have the anxiety of whether my life was threatened or the bodily sensations I described, it would be a little easier. How do I live with this terrible debate and these sensations with no way to rid myself of them, to fight them, to welcome or accept them?

No ECT!!!

I showed up for my scheduled ECT this morning. And in the pre-screen I talked about how well I’m doing, back to baseline on everything. Somehow the conversation twisted and the PA asked if I even wanted a treatment today. Um, NO!

I waited an agonizing 5+ minutes while she talked with the treating psychiatrist. They agreed I was doing well enough not to have a treatment! I’m to call in a week for a phone screen to see if I’m still doing well or if I need a treatment. If I’m doing fine, they will discharge me and I can get the port out of my chest (used to access a vein easily since IV’s are hard to get on me).

Hooray! I celebrated my unexpected free day and good prognosis with a ginormous mocha from the coffee shop in the hospital lobby.

I also saw my regular psychiatrist today to ask about the fine tremors I have developed in my hands. But, I got to gloat about how well I was feeling. And I was shocked to be doing so well that he wanted to see me next In Three Months(!).

Even as I’m feeling well, and stable, and Good, I’m worried about the bottom falling out and plunging into suicidal depression for the millionth time. My doctor encouraged me not to worry about what might happen, and even to make a video or add to my mirror post-its that Yes, I was doing well. Something to help remember if (when?) things get bad, that I had been healthy and it would happen again.

Why do I expect suicidal depression to come again? Just because it has been a companion I could count on? And I got as good as one could get at dealing with it healthily?

How about I have no freaking clue how to be in a good space? I’m worried that the increased energy I feel is mania, and that the only way I have to express how good I’m feeling is to talk too much or to spend money. Both of those are things I do when I’m manic, yet I’m not manic.

I just don’t know how to be healthy! What are behaviors You have when You are healthy?

Around the Cycle Goes

This week has been up and down and around as my mood, or more my thoughts, cycle through various mental phases.

I started the week with the ever popular Xmas delusion I get every year. Fortunately it lasted only several hours on Xmas Eve when I was in and out of touch with reality. My mood was still in the middle but dipping at times on Xmas Eve and Xmas Day.

Then December 26th, I was back! Mood perky and happy and optimistic. Mere fleeting thoughts of suicide (baseline for me to just have a few).

And then on the 27th, OCD thoughts kicked in and all I could tell myself was plans to kill me. All the time. And again I couldn’t talk about it or tell anyone until my NAMI support group meeting that night. Then I could articulate calling the ECT office to see if getting ECT earlier than scheduled might help. And I could note that I really needed to tell my mom about the OCD suicidal thoughts. And I was encouraged to contact my therapist, who did tell me to contact the ECT office and let them decide if I needed one.

You see, my mood was great! Stable, and in the middle. Not depressed. Not hypomanic. I just had obsessive, albeit dangerous, thoughts. I didn’t know if I would get to a point of having intent though.

When I called the ECT office today, the 28th, I thought the thoughts were less obsessive and therefore farther away from any intent. But later in the day they were just as obsessive and I worry about intent showing up. Or if obsession will finally give way to compulsion in OCD. It never has for me, but will there come a day that the pathology progresses?

My mood is still stable, happy, good, in the middle. It’s just my thoughts. I don’t want to kill myself, I just can’t stop holding it out as a possibility. Obsession. I suppose if I was worried enough, it would warrant a hospitalization. But, again, my mood is great! It’s just the obsessive thoughts.


I hate mental illness.