Dear All,
I think I’ve found some answers to
The freezing, my daughter pointed out
That the first thing I should do is
Increase the number of calories I’m
Eating, and keep a food record. Started
To do that the past 5 days, eating
More than ever and trying to stay on
A eating schedule. I had lost a lot
Of weight over the past months.
But now something more serious
Is popping up. I told my doctor
In May that at odd times I smell a
Sweet floral sort of purfume. Not all the
time but enough to notice it. She asked if
I was having seizures…I didn’t know???
If I was, how can I tell living all by myself
She said that could do a CAT or
MRI (…copay costs, limited income) decided
Not to do it in May for the time being.
I see her again at the end of July and I’m
A little afraid to tell her what
Happenes at night sitting in bed.
At night I like to read a bit before
Going to sleep, some times my eyes
Go bleary and I can’t even read. Some
Times I drop the book and I’m “gone”
For some moments and come back. Last
Night if I can’t read, I’ll try to
Put some music from my phone on and
A number of times I drop the phone
Or book just “poof” I’m out.
I’ve had narcolepsy all my life,
Rarely do I get the yawn yawn I’m tired
Feeling (I have insomnia also) when
I feel the brain fade "you’re done, time
to sleep and I respond to that and
Lay down to sleep.
Any of you have things happening?
My deep concern is I may be sick, be
stopped from driving and the cost
and additional tests and copays.
None of this ever happens while
driving - but if I feel a sleep attack
coming I get off the road - and sleep.
Living on disability is tough.
Currently have no home base, just
My truck and very small RV travel
trailer.
What would all of you do??? My disabilty income
Is I’ve already checked "all the social service programs
My income is just a little bit above The guide lines. Any thing I would Qualify has long waiting lists and "lower income" people get bumped to the top of the list when there are Openings.
Sorry this was a run on message. Sincerely, Ranger100
Does your State have QMB at various levels? (Qualified Medical Beneficiary) I think it's part of medicaid.
Getting cold is a problem for me, too. In a yoga class today I felt my fingers get warm during the stretching and it was wonderful. I'd love for that to happen to my toes :). I'm skinny but partly because I don't have the muscle mass (not much) that I used to. Muscle tissue has more mitochondria, the energy factory of the cell. So building muscle helps, yoga stretching and breathing does, too.
I'm not sure what "QMB" would be in PA. I have medicare and my old employer's "retired" PPO Blue. The problem is the copay's for an MRI or CAT scan can run into hundreds of dollars for my out of pocket costs. That would mean no food or gas for weeks or the month. The total out of pocket per year for me is $5,000 and that would put me in the street. It's puts me between a Rock and a Hard place.
A nutritional myth is all fats/oils are "bad" that I've found to be totally wrong advice. The Brain NEEDS healthy fats and oils. Sugars are not helpful for healthy brain function.
Some kind of exercise, even walking 20 minutes every day is very important.
Since boosting calories and adding more healthy fats and oils, I'm seeing changes for the better regarding sensitivity to cold. I have to be careful with the food budget (Gluten is a major issue) and need a simple basic supply of organic produce; potatoes, onions, carrots, Brown Rice and meat.
I'll keep you posted.
I have approached every social service agency and government program and turn up slightly above the limits (single household) or could get on long lists to be bumped down when a lower income people apply. Tired of asking and the rejection is painful.
-----> Maybe a bunch of disabled people should form a "household", qualify and finally have a home and a mutually supportive community! Each helping in their own way and abilities. It's very difficult out on your own.
I think I'll scream the next time someone says "you look good"...Step inside my world and you would Never ever say that....
Thank you again for your response and thoughts :)
Sincerely,
Ranger
Carol said:
Hi Ranger,
Does your State have QMB at various levels? (Qualified Medical Beneficiary) I think it's part of medicaid.
Getting cold is a problem for me, too. In a yoga class today I felt my fingers get warm during the stretching and it was wonderful. I'd love for that to happen to my toes :). I'm skinny but partly because I don't have the muscle mass (not much) that I used to. Muscle tissue has more mitochondria, the energy factory of the cell. So building muscle helps, yoga stretching and breathing does, too.
Are you on any stimulant medication for narcolepsy. My hands and feet are always cold due to poor circulation that is a side effect from my meds. In the summer I still wear socks to bed and in the winter I wear 2 pairs of socks and slipper boots to bed. Along with knit gloves because I’m so cold.
Hello Sleepingbeauty,
Thank you for your response. I’m not
on any narcolepsy meds. Unless
We can call coffee a medication.
When I was diognosed at age 58
it explained a lot of my life time
experiences. And, I chose not to
start a whole bunch of meds. From
what I read here about them I’m
not sure there is a magic pill that
works…
Thank you for your reply
Sincerely,
Ranger
