NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Pillows? Travel Advice (https://www.neurotalk.org/peripheral-neuropathy/10278-pillows-travel-advice.html)

MelodyL 01-06-2007 10:16 PM

This may be a stupid question but where are you going on vacation, that you need all these pillows.

You poor thing, you need to act like Cleopatra and have those guys carry you around all the time.

or......


I think you should just go to Hawaii, lay on the beach, soak up some rays and pick up some gorgeous hawaiin hunk AND HAVE SOME FUN!!!!


That'll make you forget whatever ails ya!!!

God forbid Alan should read this!!!! oy veh!!!

Oh, and get this, yesterday, he decides to tell me that some years ago, my ex-boyfriend kept calling me on the answering machine and leaving messages that we should get together for lunch. I told him "I never got any messages" and he replied with a sneer on his face: "Of course not, that's why they invented the DELETE BUTTON".

I never laughed so hard in all my life.

be well!!!
mel

LizaJane 01-06-2007 11:49 PM

5 Attachment(s)
[Yup, I'm going to Belize in Central America, staying in a thatched hut in the jungle. The road from the airport to the jungle is unpaved, as are the roads to the Mayan ruins and caves I'm planning to visit.

Don't laugh. I was told I'd be pain-free in one year from the surgery, so having both kids home from college on winter break at the same time, I planned this vacation that we would normally all totally love.

Here's a pic of where we are staying, as well as a cave which I'm passing on, but did want very much to visit, for its amazing pristine ruins inside.

You can see why I'm fretting....

Hope this works.
Attachment 640

Attachment 641

Brian 01-07-2007 12:03 AM

Liza, I had 3 bowel operations in the past and each time after the op, the hospital give me a rubber donut which you have to blow up yourself, it was impossible to sit without this rubber donut thing, it was approx at least 20 inches in diameter, worked the best when it was only blown up to 3/4 compacity, if you can still get them i am sure they would be excactly what your after, perhaps a pharmacy may stock them.
Brian :)

LizaJane 01-07-2007 12:10 AM

Brian--I'll check my local pharmacy tomorrow. My list is getting longer and longer. I only just realized I need a tetanus shot, and maybe hepatitis. Some say to take antimalarials, but I'm not sure yet. My doctor is checking for me. I had blood drawn today for hepatitis antibodies to see if I need the vaccine. Also, I had blood drawn for ACTH, because Thursday's cortisol level was practically zero. So it may be that my endo will want me to take prednisone--I'll find out Monday.

I don't know if I posted this. My mail order pharmacy sent the wrong dose of steroid nasal spray, and for one month I've been taking four times what my doc wanted me to take. As a result, my adrenal glands have shut down. The pharmacy did this before, and at that time my pituitary also shut down. It took me from last June through October for my body to be making its own cortisol after it was shut down.

I'm wondering if this isn't why I didn't fuse.

Brian 01-07-2007 12:54 AM

Liza, thats awfull about your Adrenal & Pituitary glands, they should be a lot more carefull with the meds directions, i know that the pituitary gland is a very important part of the brain that produces much needed chemicals for us, the only reason i know this, is my father had a wopping big tuma on his pituitary gland and he was giving a few medications to subsitute what the gland should have been producing but wasn't of course.
Anyway have a nice holiday.
Brian :)

Wing42 01-07-2007 01:53 AM

I think Melody wins for most intriguing idea...two pretty boys carrying you on a litter, feeding you grapes and giving you massages as you need them. You'll have to find the website to order them yourself, unless Melody tells you where she got hers. :D

glenntaj 01-07-2007 07:17 AM

Holy s***, Liza Jane.
 
I'd put money that your lack of ability to fuse is related to that overage in the steroid nasal spray. It must be playing havoc not only with your cortisol balance, but with your calcium levels. (Wonder if this would be picked up on a CBC, or whether it would take more sophisticated calcium ion testing.)

In any case, this is serious--a person such as you, of a "certain age", as they say, and not being a large person to begin with, is definitely at risk for other bone loss from such an ovedosing, beyond the fact that it likely leached calcium that might have been available for fusion.

(Being the type of person I am, I always wonder if you've got a malpractice case here . . .)

MelodyL 01-07-2007 12:11 PM

Liza Jane:

You go into your thatched huts and caves and you live your dream. You remind me of Dian Fossy in Gorillas in the Mist who lived her dreams. This is what I hope you find in the caves.
http://bestsmileys.com/treasure/2.gif
I hope you have a wonderful and pain-free vacation!!!!!


This is what I would do if I had the money and I could have the vacation of my dreams.

http://bestsmileys.com/water/15.gif

Then, part of my dream has always been to swim with the dolphins.
http://bestsmileys.com/fish/7.gif

Have a great time.
Melody

LizaJane 01-07-2007 12:38 PM

never told you guys?
 
I'm stunned I never told you guys.

In Feb was the "fusion". In March, my ENT gave me dexamethasone 1 (ONE) mg/ml to use, two puffs each nostril twice a day, with antifungal nose spray.
By May I saw my cheeks had changed shape and I looked like a different person. I went to an endocrinologist who did cortisol and ACTH levels and found me to be suppressed at both adrenal and pituitary. I then went to my old sinus guy, who graduallyd decreased the nose spray. I was at normal in the autumn, but then the mail order sent the wrong dose, and my adrenals stopped again. I argued with the pharmacy, and eventually mailed them the bottle to show them they'd blown it. They apologized, and again I had to be tapered. Then I called them for a refille this past week and read the botte closely and saw that once again it was the ONEmg/ml, rather than 1/4 mg/ml dose. My doc ordered the cortisol, and it's zilch. And then I had the ACTH, which I won't know about til tomorrow. Meanwhile, I'm going to have to squeeze in the endo before I leave. Hope he will just talk with me on the phone.

Can you believe this? And then...of course, I didn't fuse.

mrsD 01-07-2007 01:49 PM

Wow...
 
This is a compounded product?

1mg/ml..? Crikies!

The typical nasal steroids manufactured are in the microgram range.

I think your spray would leave alot SWALLOWED and hence become systemic.

I have never seen anyone with a compounded spray like this so strong!
No wonder you are having systemic effects. Not only would this affect
fusion, but also osteoporosis, and low potassium levels.

I found an interesting paper on the net..that discusses the fact that the nasal steroids do not get high enough into the nose, to really help some people.
http://personal.ecu.edu/wuenschk/SteroidsNasal.htm

What type of sprayer was provided? If the fancy shmancy devices do not work, I wonder if yours worked at all? If it sprayed just the nasal passages, you would swallow most of it. Lying on the bed with your head hanging back for a while might have allowed more local actions. (this is discussed in the article above) But I think the dose of this spray is really "out there" therapeutically.

Steroids, smoking and NSAIDs are the 3 known fusion blockers.


All times are GMT -5. The time now is 12:52 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.