Surveys

    Now this I find funny. I guess I've really gotten a reputation. The hospital system contacted me the very next day not just once, but three times. The first time was a text survey about my ER visit. The second time was a phone call inquiry on the quality of my visit. The third time was an automated voice survey about the quality of my visit. 

    Honestly, I could have let the female nurse do the catheter and she probably would have been gentler. Ironically, I thought I'd be crossing fewer lines if males did it. It wasn't the first time I'd had a catheter. That first coma. Before I went into it. The female nurse did the catheter just fine that time. She did it more gently. But that was '98. Anyways! 😳

The primary disagreement i have with some of the doctors is over how clozaril has affected my life. I feel like it was detrimental, that it buried emotions by suppressing them and those emotions lay latent beneath the surface, bubbling up from time to time.

The side effects such as weight gain and sedation were just the icing on the cake for me. I only hope I am able to find a balance in my life post clozaril. I refuse to believe that I am an addict just because such a label is convenient for others and I was miseducated on what medications can do. I know the limits of these medications more clearly now. 

     The doctor's appointments went well. The internist seems to find me rather odd but not alarming. I still feel spacey and anxious. I do feel mentally detached from reality, which seems to be the very definition of dissociation. I guess my desire to understand these medical people comes across as a strange fixation. But I spent so much time in the system that to me it seems natural to want to understand.

Spidey leerning about twust. Ebbyday. Di doctors leerning too. Spidey teech.

Patience

    I cannot find the patience for this. Particularly with the physical issues going on. It's hard to function. I need to understand what's going on with my sinuses because this CANNOT be normal. I'm having to take severe sinus around the clock without missing a single dose. I do not understand what is going on with my body. I do not understand. It has never been this bad for this long. Something is not right. 

The Big Day

    Tomorrow is my big day. The body doc and the head doc. I want the internist to check for an infection. Allergies cant possibly be this bad. 🤧 I don't know why I feel the way I do, I just know its not good.but I need to be patient. Rushing my health has never been a good idea. I reached catastrophic coverage, so might as well get it checked out really well. 

Big not so White Lies

    I still don't see why the hospital feels lying and threats are appropriate. Or how that helps at all. They really took a giant leap backwards with that. But I can forget. I made mistakes too. That was a long time ago though. If they hadn't been lying and threatening in the er, it didn't have to go that way. But if there's a next time, Bon Secors. I'm sure they can manage to stabilize a bad reaction to spravato more effectively. Not that I take spravato anymore.

The Whatever

     I've been very frustrated with the whatever. Some people call it memory problems. Some called it PTSD. Some called it DID. Some insist on Bipolar. Going in too many directions under the influence of too many medications and professionals was definitely part of the problem.

Diagnosis Soup

Going back to the diagnoses, the ones I truly believe in are ADHD (mild to moderate), Depression (remission), cPTSD/DID, mild Autism Spectrum, mild to moderate CAPD, and the physical ones. Too many whiteboards around psychology and psychiatry. I'd really like to consolidate everything so I can remember it all at once. I don't believe in perfectionism, medicalized or otherwise. I believe in personal space. People get bitter and resentful. They want to tear someone down or control them. I don't like that. Hopefully I can inspire from a distance. Let the kids have their turn. I'm just sick of the demonization. God knows there is something more important in this world then what I do or don't do. 

Light vs Dark

    I've been struggling tremendously with focus. They never took the Ritalin back so I've tried one here and there. It actually seems to help. Ridiculous for someone to be so afraid to take his own meds. But it's not been easy.  I guess some things make sense. The hospital gives me the pills and tries to perfectionize me, I get angry and we both eventually make some mistakes. Then it's the back and forth. It does make sense. 

    In the 90s we didn't know as much. But I thought the doctors could learn. They could learn from their mistakes. That way they can do better for the kids. I'd be like one of those cautionary tales. I just get upset at all the pills then I get upset at the mistakes, then they're pissed off that I'm pissed off, then they're trading me between hospitals. Then they're threatening jail and restraining orders. It's rather odd. It's a very strange life. 

        I was like bubble boy. But I didn't intend it to get this far. So now people know some of my darker sides, including sometimes taking hemp products legally as recommended by an MD and catching hell for it. Though Spravato was much more powerful. In my opinion. I still believe that ketamine is fantastic for depression. Though I'm not on it right now. And I've lost interest in looking for miracles.

    But there's good sides too, and while my family, former professionals, and some former friends seek professional help, I should focus on some of that. I did play sports, do well academically, and met a lot of cool people. I worked different jobs. I traveled. I was close to the kids. 6 nieces and nephews and at times honorary ones. I've have to think about some of the good parts more. While everyone else seeks professional help. 

    I do better in smaller groups because of PTSD/AS/CAPD (trauma/autism/auditory issues). I know other people with medical problems that avoid large groups as well. I just don't have the energy to go around and tell everybody what's going on. Sometimes I don't even have the mental clarity. 

    I like to think of all the people who have helped or have been there. You know? I'll have to mention some of my favorite people. I just can't push too hard. I've got to focus on my writing. It helps me think more clearly and to see the bigger picture. I miss Elle. I hope she's doing well. 

    I'm told I need more cohesive thinking, more connected memory, a lack of sensory chaos, to avoid stress, and better emotional and impulse control. 

    Yeah, I think it's starting to make more sense. Hopefully before the lynching mobs show up. Anyways, I figured I'd start publishing everything as quickly as possible just in case. This was supposed to be PG. Now I understand why Prichards wanted complex medical trauma instead of DID. 

My allergies are really wearing on me. I think i developed a sinus infection. Resting it up. I feel that I'm getting too distracted by physical symptoms. fatigue, headaches. lack of sleep. I've become somewhat nocturnal. I get anxious around people. More posts to edit... details to change.

Work

I keep getting the feeling there's more work to do. I have to make sure I finish this. I cannot fall back into my old life.

I think Im seeing the big picture. But im tired and some people are bad in combination. It's important that I'm around the right people. 

Esketamine

 

Landed me in the ER

K

 

My Women

    Now where was I? Ah yes, my women. Spidey hab a full team almost. Dey take good care. Today, Spidey saw Molly, Brittany MD, and Mo. There's a Matt around. There's a new crop of intern. But I haven't met her. Then there's Artstick. I don't think Elly's on the team ennymore. 

    Of course Elle is gone. Leaves is still out there somewherez. Jenn's working for Elly. The allergy ladies. I see the one with the GI doc soon. I'm getting the new ENT, new dentist. Gotta see the eye doc. There's coffee and the other Jenn. There's a Psychiatry PA. The gals down at the Internist. Busy, busy. Oh, the neurologist. Who's more then happy to defer to the others, but then she just monitors my device. 

    Then I still have the sleep specialist at Anmed. I need to pick up some l-theanine. The nighttime one helps, but I need some for the day that doesn't have melatonin in it. Now I'm looking at getting an assistant or a body double. Well staffed. Spidey pay top fly. 

Health

Dear Members of the Community,

    Please stop analyzing my health and personal habits. It's wearing me out. It's counterproductive. If you ever want me to stop living in hospitals and doctors' offices, you'll stop asking. Driving me to drink with this shit. Seriously, I'm not a science experiment. I swear to God on one side I've got the medicalization crowd that wants to hyper analyze every perceived fault and on the other the bullshit crowd that knows it's all a load of internalized crap dressed up as DX's. It makes no sense.

Thank you,

Ashes

Plan

I've been asked what the plan is a lot. You may not be familiar with how serious "medically complex" or DID are. It's not exactly hospice, but prognosis isn't great. Permanent disability. Not a normal life. Maybe I'll have a relationship, maybe not. We all gotta die someday. Maybe it will get better. But as the book title says, the body keeps the score. Pretty clear I lost. So, I have to conserve my energy. I may look ok. I promise you; I am not. One too many falls, and all the king's horses and all the king's men... I was trying to work. I'm told that's not realistic. So, I'll try to write. Maybe something will change. Maybe not. I'll let the kids have their turn. Broken mind. Not evil, just broken. Yeah, it's dark. It is what it is. Too tired to fight. You know, I think I'll have one of those parties' people sometimes have when they become terminal. I'd like the process to be happy... ish. Too much medical manipulation. I need to take time to understand this better. It's not that I'm dying anytime soon... but it's coming. Somethings only God can control. It's easier to tell everyone at once, rather than one at a time.

OK, maybe it's not quite that bad. But some people don't know how to mind their own business. They're too busy shaming and manipulating lesser mortals. One of these days I'll rediscover the meaning of "right to privacy". I don't understand why MIP engages with categorizing and demonizing people to such an extreme. Medicalized perfectionism.

Diagnosis

Get a diagnosis, they said. Having a name for the problems helps, they said... $*%#.

Ok

    I am indeed ok. I'm not very functional. I still get Angry. But they adjusted the medicine. So I'm living independently.  Sinuses have been super bad. Sleep is poor. I definitely have low mental presence. Not terrible. But low. To me, it resembles a mild dementia. A cognitive impairment. One that does not seem to respond to medication. I need to be careful. Sometimes I say the wrong thing. I feel like people sometimes are surprised by what I say.

    The team says that boundaries are important and that other people might need their own trauma counselors. Because people have feelings. I do feel that I look stronger than I am. It's not that I enjoy being gone. But I feel like its better that I don't affect people too much. 

    Sometimes what I miss is talking about something other than me. I can't figure these people out. They act like I'm the devious one. 

Sleep

It doesn't look like I'll be going back to Vinewell. They took it off the list. Just as well. I named them as at fault for not checking my vitals. For the hospital visit. But I'm only sleeping a few hours a night. Well, minimum is about 5. Sometimes as much as 7 or even 8. But that's much different from sleeping 9-11 a night. I'd say my sleep has decreased by 40-50%. Maybe that's why she said I was in a deep sleep with Clozastill.