[Written in an email on December 24, 2010]
Man, been a rough couple of days. Made sure to kiss my kids goodbye every time I left the house, not knowing if I’d see ’em again.
Got tremors so bad Jim said I made Michael J. Fox look like a brain surgeon. Couldn’t walk w/o my cane and support from a human. Couldn’t drive. Almost wrecked three times before I clued in it was my head blanking out w/o warning.
On disability right now for six months. They looked for tumors, ms, als, stroke, brain bleeds. You name it.
Had me on Valium to try and stop the tremors, but that didn’t work and kept me awake. Ugh, too much shit to go into more. But glad to be home again.
Doctor said this drug is reversible. I just have to give it time. Have an appt for the neuro in the next week I think.
To think they put me on it for the pain they couldn’t explain except for maybe fibromyalgia.
Well, I sure did wish I was there. I’m on disability for the next six months … will take some time to sort out what’s this med and what’s the RA.
Went on the med last month because of the pain of the RA and the RA meds not working good enough. I need a different doctor — I’ve felt this one is tossing pills at me and now see what happened?
I told her time and again, my body reacts oddly to meds and we have to be careful. The valium, wakes me up but takes the edge off some of the worst tremors.
. . . I have wayyyyyy to much to do in life for this to be done. Fuck that.
I was thinking of you a lot, maybe that’s what you picked up on. Was waiting to share more until I knew wtf was going on. You have enough going on.
I have a book to write — today I noticed my brain is clearer. On day two w/o those meds. So hoping that comes back first .. rational thought and speaking in sentences that make sense.
I think the last time I was at your house was the last day, or close to it, that I drove. Almost wrecked the car on the way home. Brain shutdown w/o warning. When I can drive again, you bet I’ll be there on Thursdays.
LOVE you so much. SOOOOO much.
Checklist of a psychiatric break
This is a list of symptoms I carried for years to give a copy to neurologists, psychiatrists, rheumatologists, cardiologists — you name it.
It never felt like my lived experiences mattered and the only information processed, the only thing, that anyone read off this list was paired with the term severe mental illness and dismissed.
Yes, so once severe mental illness (PTSD & FND) caused by childhood sexual traumas was noted, the rest of this list went ignored. Though I did insist a copy go with my records. If it’s in there, I don’t know.
What I do know regardless of hospital, doctor, or emergency room I was seen — my symptoms were all viewed as a mental break and physical issues went untreated that the psychiatrist wasn’t able to address.
It amazes me still how I was left to suffer while being tossed between doctors like a hot potato. The list was handed back to my by a neurologist once who insisted I accept my mental illness diagnosis.
I said, “I accept my diagnosis. I’m asking you to help me have a better quality of life. Can you help me?”
He scratched his head, looked confused and admitted he didn’t know how to help with that. Then he directed me to the door.
There’s hope for help written in the words of this list.Hope. I lost that after the writing of this. Lived hope-less for some years, and found a spark again in the common room of Stanford Psych Ward September 2013.
Prior to December 16, 2010
- RA (Rheumatoid Arthritis)
- RA Meds (Enbrel, Gabapentin, Imuran, Predisone, Steroid Shots)
- Issues with walking, lifting legs, falling, foot dragging, stiffness. Had to start using a cane in Sept.
- Spaced out moments. Issues with driving. Blank outs.
- Inability to focus, mental fog
- Extreme exhaustion
- Took off six weeks Sept/Oct due to pain and to give new meds a time to start. (Enbrel started)
- Had a steroid shot before returning to work week of Halloween.
- Pain became worse. Walking became worse. Rheum didn’t know why. Suggested physical therapy. Prescribed Gabapentin (November).
- Walking became much worse. Foot dragging, a lot more falling. Like my legs lost signal and would drop.
- Chronic pain that couldn’t be managed. Started using marijuana at night to help with pain around October. It helped with pain and was able to finally get sleep. Couldn’t take during day because life and work.
December 16, 2010
- Felt and heard a pop in my head early a.m.
- Left work early, noon, exhaustion was extreme. Felt off.
- Too exhausted and mentally off to finish drive home. Stopped at MIL’s house. Stopped driving.
Post Dec. 16, 2010
- December 20, stuttering started in a big way that evening. So did the twitches, tremors and head banging.
- Loss of short-term memory.
- Slurring words or saying things that made no sense. Saying things that were out of character.
- Issues with emotions. Feeling them too much, out of character and often unrelated to what was happening at the moment.
- Incredible startle responses.
- Sensory overload on sounds, sights, movement, touch would lead to bad twitching. At times felt like electrical current running through body, very painful.
- Tons of pain, body aches, felt like skin was burning on my arms at times.
- December 22-31 – Three ER visits. Catscan, MRI. One visit to neuro (sent to ER). Given adavan didn’t help tremors/twitches/etc. Valium did help to sleep.
- Needed help for self-care. Unable to do more than sleep or sit. Unable to take care of children, work, go anywhere. On disability.
- See Dr. Bhatia, go on Depakote and Xanax. Family told it’s a mental issue to seek psychological help.
- Notice weather, illness, stress or AF aggravates and makes issues more intense.
- Problems answering questions. Will make me stutter or tremor. Through April wasn’t able to answer questions without great difficulty, or even listen to them without having tremors. April, started being able to answer questions like what I wanted for lunch.
- Depakote didn’t help. Prescribed Lamictal. Told to seek psychological help, that I’m having psuedo-seizures (PNES).
- Start seeing a psychologist about May. She suggests I find a new neurologist either at UCSF or UCLA.
- Communicated with Dr. Lebby for guidance – he said I needed a video EEG to know for sure if PNES.
June and later
- Starting to have a few memories from what I think of as the dark ages. These are the first and they aren’t significant in terms of importance. The memory content that is, but I get a sharp, stabbing pain in my head that radiates out when I get them. It’s like a lightening bolt or something when it first zaps.
- Dreams have started again. A few over a couple of weeks at first. Now much more regular. Able to write fiction again.
- Able to focus more and take care of myself better. Light years from Dec, but light years from my regular self.
- Learning and adapting to my limitations. Balancing activity with sleep. Days of quiet with a trip to the store or doctors.
- Walking is normal, other than balance issues from the tremors.
- Ride a trike to get around or the city bus on my good days. The bad days I’m still in bed or on the couch.
- Able to handle the (noise, sensory input) kids, with Jim home, for two days in a row now. On a good day, can spend a morning with youngest son alone. On a great day, the youngest two for a few hours. Overloads, so the next day or two have to be low-key down days.
- I started being able to help more around the house and cook for the family (in small doses) about a month ago. The kids first dinner was mac n cheese. Took every single drop of energy I had to do that, but it made me feel better knowing I took care of them again in some way.
- The one medicine that really helps calm my nerves down from twitching, jerking, overreacting to things I don’t always realize I’m hearing, seeing, etc, is marijuana. It’s like taking a really hot shower that calms after a really crappy week at work, but to the 100th power. I can handle social situations, noises, scenery, vibrations, anything that’s sensory input much better. Often it relieves the majority of the twitching, tremors, etc. It’s also how I manage the pain that tends to come with this. It’s like an electrical storm when it starts coming on, best I can explain. I know it’s coming. My body just feels wrong and it aches and sometimes, if it’s a really bad episode coming on, the back of my arms will burn and I feel pressure pushing me down, especially in my head. It’s not easy to describe.
- When I’m really overdone mj is the only thing that helps in combination with a Xanax. The Xanax doesn’t work well enough alone. And when it’s super bad, the mj doesn’t work well enough alone. The two together helps greatly.
- I will say mj has cured my horrible sleep patterns and inability to calm my brain from thinking too much at night before sleep. Though on the bad days, weeks, I can sleep all day, be up for two to four hours and sleep the rest of the day. I do my best to be up when the kids are home so I can help Jim, have some sort of routine and be active in their lives at any phase of this thing. On the good days, I can be up most of the day, still need naps, though I have had a few days that were totally nap free and I did OK.