Pillows? Travel Advice
 

Hi Folk,

I'm going on vacation next week, and will be on plane, van, car, and maybe jeep. Sitting is still painful to my left buttock. There are things to do on the trip which I can only do if I can make it through a car trip of about 2 hours on unpaved road. So, reluctantly, I'm passing on these activities. But I'd really like to have the adventures I'd imagined and be comfortable.

I'm soliciting your ideas.

Today I ordered a donut pillow. I don't know if it will work, but my physical therapist thought it was worth buying.

http://medicalproductsdirect.stores....pospilpos.html

Any other ideas? Remember, the big problem is absorbing shock when I'm vertical or sitting. Walking is usually okay; lying down is fine.

Vacation
 

Well, the only things I can think of that have ever helped with a pain in the butt were two things: a divorce, and then an ice pack for PN pain... :)

I seem to recall that you can't tolerate cold, but maybe this is not right. Anyway, if you can, frozen ColPak ice packs wrapped in a hand towel are great for PN pain. I could not stand to ride in the car without these when I was first diagnosed. Sitting on one numbs the pain a great deal.

Cathie

Elastic belts
 

What about one of those elastic belts for around your waist? You know the kind that is designed for bad backs and sold at chemists? If you wear it while you sit in the jeep, I assume it would keep your upper body from swinging around alot, thus limiting the possibility of strain or injury. It would just keep your midrif area contained and cosy inside the elastic limiting motion.

I think that's a great idea
 

One of the most painful parts of a car ride for me is the swaying back and forth that the torso does. You are tensing the body in order to hold it upright. It makes me incredibly sore. So I tend to agree with Aussie that an elastic brace might be a good idea. Something like maybe one of these? http://store.orthoathletic.com/merch...ct_Code=31-560 This is just an example and may not be the right one for you.

Billye

My grandma and mom used to wear a torso brace all the time- they called it a 'girdle' and no self respecting female (of any size) would've been caught without one (or more) in the '40's & '50's.
I don't see them around much any more, except for medical or overweight problems.
But it used to be that many women considered them a vital part of the wardrobe- a 'foundation' item, & one of the polite 'unmentionables' ;) All of 'em wore 'em!

I do have a brace and have worn it rarely since the surgery, but with comfort. So you're right, Folk, I should resurrect it (I'd not thought of that) and try it out for car rides. Anything else? The issues are: plane, incredibly bumpy car rides and jeep rides, and maybe canoeing if I can figure this out enough. I have zero endurance, so I can't do anything with too much walking (this is all deconditioning from NOT EXERCISING in 2 years), but I'd like to see the sights.

Please, keep sending ideas.

Hmmm...
 

Seriously, I think that you will need a support pillow on the plane. I wonder if your back is going to be able to handle bumpy rides, especially if you are in a Jeep. Could this bumping bother your fusion?

The last time I canoed, I had a good back and was not sick. The only thing I can remember is paddling made my back and especially shoulders tired...

Cathie

P.S. Have you mentioned this trip to your back doc?

Gel Seat
 

Hi LizaJane - I've bought other "comfort" products from this company - can't attest to this product but its called a "Memoflex Gel Comfort Seat" - folds in half so easy to carry and looks like it could cushion your rides......:)




http://www.firststreetonline.com/pro...archresult.jsp

How about one of those Temper Pedic Pillows.

Alan and I have been sleeping on these for years., Wouldn't be without them. Very very comfortable.

And to the person who called a girdle a torso brace, well, I never laughed so hard in all my life.

All my life, up until I marred, I had to wear those awful things to work every day. I was conditioned by my mother who wore a playtex girdle all her life. Took 10 lbs off of her body instantly. Everything was pushed inside the body and all the clothes just glided on and gave you a nice fit. Yeah, but you couldn't breath all day long. I was never so uncomfortable in those things. Thankfully I stopped wearing them after I got married.

I told my husband, he married me, not my girdle.

Now I know it's called a Torso Brace. Thats good one!!!

mel

I've collected some opinions now, and made two orders, with at least one strange result.

My phys therapist recommended a foam donut. I ordered one, and it was ridiculous---an itsy bitsy piece of nothing that couldn't possibly absorb any shock. I've sent it back. A doctor recommended gel, and I found a gel seat that looks like it has some support, so I've ordered it:

http://www.autobarn.net/gel-seat-cushion.html

It hasn't arrived yet, so I don't know.

Today I saw my feldenkrais person. She thought the gel was all wrong, as it absorbs vibration but not shocks (who knew?) and suggests hard foam. Too late. Also, she says stay away from tempurpedic, as I dont' want something that will collapse, but rather something that will retain its shape.

I've looked at kmeb's idea, and it looks good, but late. I need to have whatever I'm committed to by Tuesday.

I ordered the magnets, but they haven't arrived yet.

Today I bought lots of blister products, just in case; had feldenkrais, as not only is my neck hurting, there's a suspicous feeling at the bottom of a foot, and still, the butt. She did help the foot.

I'm packing light on clothes and heavy on health aides!

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

[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

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 :)

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.

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 :)

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

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 . . .)

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

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.

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.

And how come, when the pharmacist filled the prescription, it didn't just hit him between the eyes that this was a massive dose of nasal spray?

I once had a prescription for an antibiotic. I am supposedly allergic to pennicilin. My mother always told me I was so what the heck, I believed her and never took pennicilin. I had some kind of infection, this was years ago and my doctor at that time told me, "moms made a lot of mistakes in those days, so we really can't be sure you are allergic to pennicilin and gave me a prescription for some kind of ILLIN thing.

Well, the pharmacist put it in the system, it was red flagged, he looked at me strangely and said to me "why on earth is this doctor giving you this antibiotic when you have an allergy to pennicilin?" I told him "Well, she thinks my mother may have made a mistake 40 or so years ago".

He said "oh really??, what's the doctor's number?" He called her up, he got me a different antibiotic.

Way to go, Biwise Pharmacy in Brooklyn. They are still my pharmacy.

Bet ya Dr. Fred would have never done that?????

mel

The meds are compounded and mailed by Sinucare, also called Home Care Solutions. The bottle clearly says 1.0mg/ml, and what was currently prescribed was 0.25mg/ml. I'm not even sure what happened in March--did the doctor really prescribe 1.0mg/ml, or did he prescribe 0.1mg/ml, and they dispensed something 10 times stronger.

So, I've developed total adrenal suppression, with resultant pituitary suppression, twice during the past year of supposed healing from the surgery.

And now, as I pack for vacation, I know why I'm tired, but damn, I am ******.

I'm thinking the pharmacist, when seeing the 1.0mg/ml dose in March, refilled each month, should have called the ENT to confirm this was what was wanted.

Mrs D-Can you find the usual dosages of this particular steroid advised for use in nasal sprays?

It IS a long trip....
 

but at least it will be WARM and there will be such beauty in those tropics!

It sounds as if you will be beyond super-busy before you go, but I'm more than hoping that you really will have some time to relax and smell some georgous flowers!

Safe travel with a bit of fun and laughter thrown in! - j

Mrs D
 

I just went to the website of the pharmacy, and this is their PDF for prescriptions: http://sinucare.com/quikscript.pdf


It doesn't specify the dose of the dexamethasone.

not good news...
 

Decadron Turbinaire was taken of the market here in USA due to
problems:
from http://allergy.peds.arizona.edu/sout...0inhalers.html

I am having problems finding the concentration of the European dexamethasone product called Dexacort.
...finally found an amount:
This would be about 14 milligrams/container. The rest is water/saline etc.

So, Liza, you have to do the math yourself to compare your compounded
to this commercial formula. Typically the commercial inhalers are designed
to deliver specific amounts accurately. If yours is a squeeze type that is extremely
variable in delivery. You can guesstimate how long your inhaler lasted, and work backwards to how much you were getting per day --in 8 sprays.
The total grams of the inhaler will include the weight of the fluid.

I distantly recall the Decadron Turbinaire here. It was made by Merck. It has
been off the market here for ages...and the newer more potent steroids,
replaced it's use many years later.

It looks like you have some questions for your doctor (who is bypassing FDA regs by using this old formulation)..as well as verifying the correct dosage.
Compounding pharmacies see alot of unusual things, they may or may not
verify a dosage like this. If the Rx was typically sloppily written, the period might have been hard to read. Also I have seen faxed RXs come thru very poorly and hard to read. If this product were compounded WITH the antifungal, perhaps dexamethasone was chosen, because the other steroids are not commonly available in raw state. Triamcinolone IS available in a powder and it could have been chosen. Nasacort brand has triamcinolone. But the type of delivery systems in commercial products cannot be opened or tampered with..they are sealed highly engineered delivery systems.

okay, I've got the bottle. It says it contains 30ml. and 1mg/ml. The directions on the bottle are 2 puffs each nostril twice a day. It's a metered spray.

So, they figured 8 puffs a day dispense 30ml in 30 days. Right? So, each day they were giving me 1 ml of fluid, which would contain one milligram of dexamethasone, or decadron.

Does that help?

In actuality, I took it at that dose from March through May, by which time I had Cushings Syndrome and saw an endocrinologist, who said I was being overdosed on this medicine.

Also, I found this: equivalents:

Prednisolone, 5
Prednisone, 5
Dexamethasone, 0.75
Methylprednisolone, 4

LizaJane,

I'm new to posting but have been lurking here for many months so I feel like know you all. Can't help on the nasal spray issue..but perhaps the pillow issue...

You might want to try a Boppy. It is a "U" shaped pillow made specifically for nursing a baby (you wrap it around your waist), but it could serve very well as something to sit on too. I've used my boppy for many things besides breastfreeding. You can get them everywhere....try any baby supply store...Also, I have been to Belize, but on Ambergris Caye (an island off the coast of Belize City) and it was beautiful. Take some bug spray too and definately the boppy for you bottom....relax and have fun.....

Ann

http://www.boppy.com/

Hi Liza Jane
 

Sorry to hear about the nasal spray problem. That is alarming that a mistake of that proportion could be made.

About the malaria, You may or may not recall that hubby leads tours every summer into the jungles and bush in various countries around the world. For probably 25 years now, he has been taking 100 mg. Doxycyline 2 days before leaving and continuing it upon return-I believe it is supposed to be daily for 4 weeks afterwards. Neither he nor any of the 30-40 people who go with him have ever had an issue with malaria or some of the GI problems people get when going into other countries. (I don't know if this is co-incidental or not, but I don't think so.)

If you are going to take an anti-malarial, you might want to consider this. I know photosensitivity can be a side effect from this, but they are mainly wearing light-weight long sleeves and long pants and there are practically no mosquitoes biting if they wear Deet... I am not keen on Deet, since I don't know what it would do to PN, but it is effective for healthy people. Then again, you may not be out in the jungles like he is.

Cathie

Liza Jane...I KNOW you are beyond
 

super diligent about your meds...But, isn't the whole THING scary? As in beyond scary?

For now tho....Just go and be one of those GIRLS HAVING FUN? after you get there, of course! Recharge in the world's beauty, yep, such places are beyond AMAZING and then later go and kick rear-ends! I have faith.

Really, IF I thought I could get 'snuck in' as your pet cat, I'd try....but, having lived in the tropics...my only observed s/e of cats [who eat the lizards/chameleons/bugs] have been a less desirable form of 'hairballs' and growth spurts...into really BIG cats as opposed to cats.

So, I guess, some remote cat 'pusha-pushas' are the best I can do.
GO HAVE SOME HECK OF A BUNCH OF FUN! - j

PICS? Heaps of pics? Pleeaasee?

Ok, I'm off
 

This is not an auspicious beginning for a trip, but it's a beginning of its own.

My son has a new canker sore and his gums hurt; I have a fever of 100 and my sinuses hurt; I've got pillows packed up the wazoo and a magnet on my butt and a suitcase full of pills, water pik, and something for every contingency I could imagine.

We're off!

See ya guys later!

Have Fun.

Can't wait till you get back!!!!

Melody