Good Day / Bad Day
May 15, 2008 1:37pm
Got up before 6:00 a.m. to say goodbye to my daughter (she's headed to Boston) - 6:00 am is very early for me. Difficult for me to function …
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zenfulliving’s Profile
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zenfulliving
is feeling Bad
About Me
Married 27 years, one beautiful daughter, several cats. Love staying awake, but not really successful currently. Have several chronic illnesses that take much of my energy to manage. Narcolepsy, Sleep Apnea, Fibromyalgia, RLS, Cardiac Pacemaker. Recently lost 67 lbs, have about 20 - 25 more to lose. The intermittent beautiful days I experience help me to better manage bad days.
Interests
Reading, attempting to exercise, cooking, sewing, managing my illnesses.
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Journal
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Today I Ran A Marathon
May 4, 2008 8:34pm
I wrote this poem/story after my last set of visits with my cardiologist, sleep specialist, rheumatologist -- each doctos told me to lower my …
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I’m With You
with you in ohio
Hug
Hope you had a GOOD DAY!
I’m With You
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Support Groups
Close Narcolepsy
Diagnosed with narcolepsy, OSA, RLS, Fibro & CFS four years ago. Haven't worked for 4 years. Trying to stay awake and learn to live a purposeful life.
Treatments
- Cylert Working / Worked
- Worked well but liver enzymes too high - had to discontinue.
- Dexedrine Working / Worked
- Worked but kept me awake, had a lot of tremors, anxiety & palpitations.
- Xyrem Working / Worked
- 5/3/08 - Xyrem now increased to 3.5 gms 1st dose and 2.5 gms 2nd dose. Helps with sleep, EDS has not improved on higher doses. Tolerating Xyrem well - no side effects - I was hoping for better outcome of EDS. Have appt. with sleep specialist May 8, 2008 and will titrate to 4.5 gms and 3.5 gms 2nd dose. If EDS is not improved I will continue with Xyrem anyway.
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