Here we go again!!
September 2, 2009 8:14am
Nothing much to say, but my head is BOOMING!! Shunt failure AGAIN!!! Levels are suppose to be at 5 to 9, visit to E.R. couple days ago levels at …
duchessm 
12:56pm Monday
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About Me
duchessm
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About Me
I am a nurse (unemployed right now), looking for support and friendship and better understand of this crazy disease.
I am a nurse (unemployed right now), looking for support and friendship and better understand of this crazy disease.
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Recent Activity
Recently:
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3 hugs given, 1 journal comment
Wednesday
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duchessm commented on Monkeymom3’s journal entry MM3 Update 10:37am
Glad to hear she is doing well. Looking forward to hearing from her as I might make the trip to see her…
Tuesday
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duchessm gave Monkeymom3 a prayer 12:54pm
I read your posting and have been on hear on and off. But very interested in how things go with Dr. Mcgregor,…
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duchessm gave DoaaS a hug 10:17am
hope u are well..…
Monday
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Journal
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Journal Entry for March 9, 2009
March 9, 2009 2:01am
Well I don't know where to start since it has been awhile since my last entry. This is the first time since my surgery 3/05/09 that I have …
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Journal Entry for March 3, 2009
March 3, 2009 5:10pm
I haven't journal in a while. My feelings going through my head these days. First I have been not feeling well lately and just not wanting to …
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Journal Entry for February 25, 2009
February 25, 2009 2:00am
Haven't written in a while so here we go. After a week from hell which resulted in two E.R visits. The last one , saturday was ok. Got another …
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Journal Entry for February 22, 2009
February 22, 2009 3:03am
As I sit here between contentment and disbelief, I decided to journal on the past days events. To start of we got 5 inches of snow in less that …
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Hugbook
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Prayer
where have u been my dear?? did u forget about me??
Good Luck
good luck with this next revision. as for the ventrical size comment, I had one NS say the same thing, that he did not think I was a good VP candidate becuz my ventricals were too small yet another said no problem and did the VP operation. Have you seen the MRI CD/film? it is easy for anyone to see the difference between regular and too small. Give em hell girl!
TJ
Prayer
Hey I'm glad to here from you! I hope your atleast getting some relieft from your surgeries...I asked TJ bout you a lil while ago. I've now completed surgery #5. After the 3 lp surgeries I changed NS and switched to a VP shunt and have had 1 revision on it. Keep in touch...add me on facebook if you have one... my name is Brooke Button Peterson.
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Flower
Hello duchess..long time sweetie since u have been here..what revision??..was it draining too much??..and how do u feel lately??..TJ had his surgery last Friday and he needs all our prayers and good vibes..he have been through alot lately!!..take care sweetie and please keep in touch so that i can be assured u r safe and headache-free..o.k?? Dody
Prayer
Praying today is a better day if you ever need to talk,I will email my phone number, Don't wait til next month if its that bad though, call and complain, You deserve better.
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Photos
duchessm hasn’t uploaded any photos yet
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Support Groups
Close Pseudotumor Cerebri
Woke up one day 3 a.m. crying in sleep head and eyes about to blow out. Pain too much couple hours later to hospital spinal tap pressure (somewhere 41-45 range). All downhill from there ofcourse with no insurance, but awesome neuro-opto, lossing vision , 9/11/08 optic nerve surgery... Lupus is not helping my condition either... I have had a headace in some form everyday since that day I woke up in mid May '08, with the all the other stuff I have NO life..
Treatments
- Acetazolamide Somewhat Helpful
- make you pee all day suppose to keep pressure down but I don't know
- Darvon Working / Worked
- suppose to DavocetN-100, working better than Vicodin at this point switching of between the two meds.
- Fioricet Working / Worked
- Seems to be helping alot. But does cause HIGH feeling then major sleepiness.
- Hydrocodone Somewhat Helpful
- Have been taking so long it is like an aspirin to me, just takes the edge off the pain.
- Lyrica Somewhat Helpful
- Helped HA simmer dowm but now have a jerkyspastic walk and starting to feel spacey and stutter when I speak.
- Prednisone Working / Worked
- Seems to be help both for my lupus and my PTC BUT the weight gain is an issue. I have gained 50lb in 9 mths an d I was a small girl..
