My Personal N=1

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I had venison steaks with a mushroom/onion/alcohol-free red wine reduction sauce. You have to add some kind of fat when cooking venison because it is so very lean. Ghee seems to go nicely when using Italian herbs like tonight. I use coconut oil when I am using Indian curry spices. I am thinking about some Venison Vindaloo for tomorrow.

I ended up giving away some big pieces of the deer yesterday. I just don't have the fridge space. I have a neighbor family who have all been really nice to me ever since the welcome to the neighborhood gift of papayas from their yard my first day here last year.

So I returned the gift with the two front haunches and two big slabs of venison ribs. They have a huge chest freezer and several children to feed so it will get put to good use. I have enough venison in the fridge to keep me in red meat for ages. I kept all the meat that is de-boned and de-tendoned and ready for cooking in little containers in the freezer. It fits in compactly.

The neighbor family was talking about maybe doing up a Hawaiian style luau with the meat and inviting all the neighbors including me. Nice people. I could tell he wanted to accept my gift of the meat but needed to find a way to make it not be a case of charity from me to them. He told me that his sister who lives at a lower altitude makes really good venison jerky (it's kind of hard to get meat to dry well up here where the air is so humid) and asked me if I would like some if he gives her the haunches for jerky making. Great!
And then he can BBQ up the ribs with his tutu's (granny's) BBQ sauce recipe and have everybody over. He is a really sweet guy who works some long hard days for the water department here. He and his wife have four very well behaved and polite children the oldest of whom just graduated from high school. I hear Hawaiian music coming from their house sometimes in the evening. There are some very nice voices in that family and talented ukulele players.
 
I think I have invented something new, especially good for when you are hungry but it is just too bloody hot to feel like cooking.

It is called Entree Ice Cream.
If I were marketing it, the slogan would be, "Ice Cream. It's not just for dessert anymore."

You take a sandwich baggie full of frozen bananas, two eggs, a bunch of nuts, and enough coconut cream to get it all to blend adding a bit of cinnamon and nutmeg to taste. You can use nut butter if you like a creamier texture or you can add whole nuts and leave a few crunchy bits. You could add sweetener but I really think it doesn't need anything other than the bananas.

When you finish a bowl of that, you really feel like you've had dinner.
 
There comes a time when a person needs to get some help. Especially those of use who are, to whatever degree, disabled and those of us who are not as young as we once were.

Asking for help does not come easily or naturally to me.

I bought this house a year ago and have spent most of the past year getting it exactly the way I want it, moved some walls, repainted, new furniture, and such.

Now that the plaster dust has settled, it is clear to me that there is an ongoing level of maintenance required in owning a house this size and that it is more than I can handle by myself. If things are not maintained, they could easily slide into funk especially in a hot humid climate.

The economy of Molokai is hurting and there are people with viable skills getting by on odd jobs here and there with a little hunting and fishing and cultivating gardens, a subsistence economy.

I met this guy who I hired to do yardwork for me but he is turning into being more like my regular handyman. He's got a wife and young kids at home and I insisted on paying him more than he was asking. I could do this stuff myself but I know myself well enough to know that I won't get it done. Stuff like drain the hot-tub, scrub it out, and refill it. I would let it go and not be able to use it, rather a waste.

He scrubbed my outside decks today beating back the invasion of spiders and wasp nests that were starting to take over.
There are spiders here that look like Halloween decorations until they move.

We also made a deal for the future that, anytime I want to buy any major stuff like a new washing machine, he will help me get the new one in and haul the old one off for the price of getting to keep the old one. I've got some deck furniture that belonged to the former owners. It's serviceable but I might like to get something newer that all matches and looks pretty. But I've been holding off even thinking about getting any for lack of a way to get rid of the old and set up the new.

The Hawaiian government has a homestead program where people who are at least 50% native Hawaiian can qualify for a 40 acre homestead for free as long as they work the land. Out on the homesteads, where my handyman lives, my funky old patio furniture would be considered really nice patio furniture and his wife would love to have my old washing machine.
 
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I'm going to be heading to Honolulu (on Oahu) not this Friday but the next for a neurology appointment. I'm going to try to have a medication re-evaluation and see if there are any other meds I might take that would get the job done with fewer side effects.

The guy who does neurofeedback here on Molokai also wanted me to have an official appointment so that I am "signed up" with a neurologist (I just moved here recently and it takes a long time to get an appointment) before we start neurofeedback sessions. I am really looking forward to exploring neurofeedback.
 
AlohaBird said:
All done with menopause and I think I have found the lowest stress place on earth.

I appreciate the concern but I've lived alone most of the last 30 years and managed just fine. I sometimes remember in a kind of hazy way going into the seizure. .
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Hi AlohaBird, when I was rhrouh with menokpkause my seizures decreased. There have been times when I have been alone and I did just fine. I was alone when my husband was working and my children were in school.

I am sure you have friends that you can call on if necessary.

It's not good to stay home bound.
 
I have been very fortunate in that my seizures only happen while I sleep. This has made it easier to have a career, continue driving, not be concerned about living alone, etc.

I found menopause to be helpful too when it comes to my seizures. They are less frequent and less severe with less of a "mush brains" time to get over afterwards.

It would be interesting to take a poll of the older CWE ladies and see if this is the case for a lot of them.
 
AlohaBird, Very glad to hear that you are on the verge of an officially clean bill of health -- esp about getting the meds evaluated to see what is the absolute best in regard to side effects and about being official for the neurofeedback. How about the sleep apnea workup in California? Is that still going to happen?
Sounds like your house is the way you want it so that being at home while the winds and rains are beating down might be a pleasure. I have wondered. Hope so. Best, Tidwell
 
The neurofeedback guy here on Molokai, while never having dealt with a case of epilepsy before, is something of an expert on the subject of sleep apnea. He said he had a really bad case of it himself and that he was able to cure it with neurofeedback.
Since then he has found other locals complaining of being sleepy and such and found that this was the root of their problems.

So, as soon as Kaiser officially signs me up with a neurologist, I am going to entrust myself to the local neurofeedback guy.
Kaiser Hawaii doesn't do sleep studies at all unfortunately. If I had it done in California it would have to be at a private practice office (Kaiser covers you when you travel but only for emergencies) which would be exorbitant. Given what I've seen of local prices here, I think I'm better off getting my treatment from the local "witch doctor" :)

He wants to have me with a particular local neurologist so that he will have someone to call if any questions come up about my meds. I think this is sensible. He probably also wants the CYA of having it on record that I have specifically "nocturnal idiopathic epilepsy". I can see why that is important to him. I could be coming to his saying I have epilepsy but , with it not yet on the record here in Hawaii, I could then try to say that his treatments caused my seizures. Or perhaps this is just my paranoid "mainland thinking" and this never occurred to him.

It has taken a loooooooooooong time just to get an appointment. Not as bad as what FedUp has to deal with but still.

But you should "always check with your doctor first". Yeahright.




How are you doing with the Z out of your system?
 
I have only been to Maui twice and I really miss Hawaii. Why isn't "poi" part of your diet over there?... I'm happy for you. In Tucson good seafood isn't cheap and fish from lakes in AZ have high mercury levels from mining over the years. I had only ever had nocturnal seizures for 15 years but recently I started having daytime ones while awake. It seems like I just keep getting more and more chemicals pumped into me and everyone is crossing their fingers hoping it works. I would love to find a way to live seizure free and healthy and not have every random side effect from western medicines. I recently went to a 'sleep medicine' doctor and she had some good ideas. She was very interested in my tongue and said a lot of acupuncture is done on the body but most who practice it believe that many ailments begin in the tongue. I told her that I have almost bitten all of the way through it, smoke and drink coffee but she said none of that had anything to do with it. She took pics of my tongue and is sending them to her associate. I am waiting for a call back. Just a thought, maybe you should show your tongue to an accupunctoral practitioner.
 
AlohaBird, I think you are one lucky woman. If the neurofeedback guy is what he says he is, then you are going to have a much better treatment outcome than if you took the usual route. The cPap is no joy. It took me years to get used to it and I only got used to it because I was so scared of the consequences if I did not. So I say you are in luck! And you don't have to wheel and deal with Kaiser. Lucky, lucky you!

The zonisamide is not anywhere near out of my system. I am still pretty sick from the B12 deficit and the idea is not to rock the boat by titrating down until I am better. I look like someone who just came out from under a rock -- and my eyeballs are yellow/brown. But on the days I get the B12 shot I feel great! Generally it is uphill!
 
Hiya gbpackerfan,

I actually have some poi in my fridge but I haven't tried it yet. From talking with old time locals, I have learned that poi was once served as a fermented dish (before there was refrigeration), one that would make Dr. Perlmutter jump for joy.

"The kids these days" according to the older folks, only like their poi fresh with no sourness to it. This makes it just mushed up taro root which is a little too starchy for my ketosis. I am trying to figure out how to get it sour like they used to eat without having it "go bad". How would one know the difference?

I wouldn't eat AZ lake fish either. The Ono and Ahi out here are lovely.

That's interesting about acupuncture. There is an acupuncture practitioner (one) here on this island. My Hawaiian healer suggested collaborating with him recently.

Have you tried cutting out the smoking and the coffee? Coffee in moderation is something a lot of people can handle without a problem but I know it's a major trigger for me.

Smoking, OTOH, is bad for your health. I don't think there's much debate about that. Seizures are often caused by lack of oxygen getting to your brain. If you are killing off bits of your lung tissue, you are reducing the amount of oxygen that comes in with every breath. This is probably not the one and only *cause* of your seizures but it sure as heck isn't helping any.

Don't mean to "rag on you" but I'm concerned for your health. I watched my grandmother die of lung cancer when I was a kid. Not a good way to go.
 
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Bidwell,

Have you ever looked into neurofeedback as a possible alternative that might help make attaching a mask to your face at night unnecessary?

That sounds sensible to not try to get off meds too quickly while also correcting a severe nutrient deficiency with shots. Too many changes for the system to deal with at once.

"Generally uphill" sounds like the right direction. Even if climbing is an effort, the view is better. :)
 
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I definitely am thinking of looking into neurofeedback. Unfortunately I have made the adjustment to the mask, but it was SOME adjustment and I could easily be persuaded that there are better ways!
 
If I were honestly convinced that a CPAP could make me seizure free and med free, I could make myself get used to it. It would really take some doing though. To me they look like some sci-fi horror creature sucking your brains out through your nose.
(my sister's husband has one)

I really like the possibility of attacking the nocturnal seizures from the sleep apnea angle. It may or may not fix everything but the worst that can happen is a better night's sleep.
 
Alohabird,
No offense taken about the smoking, I am well aware of how horrible it is for me. The poi comment was a joke because I thought it was pushed to the tourists by the locals but no one actually ate it. I am at a point in my life where I am making a lot of changes, some forced upon me and some voluntarily. This is my path and I can see that I've made some deviations from it that are in my control and some were not. I appreciate the support and hope for the best for you.
 
Hey packerfan -- please wait to quit smoking until there is some good space in your life. I say this because when I managed to quit smoking I was about as miserable and as crazy as a person can get. I sure would not wish the stress of it on you. Tackle it later!
 
gbpackerfan said:
Alohabird,
No offense taken about the smoking, I am well aware of how horrible it is for me. The poi comment was a joke because I thought it was pushed to the tourists by the locals but no one actually ate it. I am at a point in my life where I am making a lot of changes, some forced upon me and some voluntarily. This is my path and I can see that I've made some deviations from it that are in my control and some were not. I appreciate the support and hope for the best for you.
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Hmm. Maybe in places like Honolulu it is just a thing for the tourists that locals wouldn't touch. Molokai tends to be much more traditional. Taro cultivation is seen as a big part of their cultural heritage.

Bidwell said:
Hey packerfan -- please wait to quit smoking until there is some good space in your life. I say this because when I managed to quit smoking I was about as miserable and as crazy as a person can get. I sure would not wish the stress of it on you. Tackle it later!
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This is probably very sound advice. But it can be taken too far however. There will never come "the perfect time" when all stress is gone and putting off quitting waiting until <xyz> can go on forever if you let it.

Congrats on kicking the cigs, Bidwell. I didn't know you were an ex smoker. That is a tough one.
 
I quit smoking 38 years ago! Some people are most proud of getting their Ph.D.'s or swimming the English Channel. Me? I am most proud of quitting smoking. It is without question the hardest thing I ever did. This was before there were various prescription aids. Those may help.
 
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