TIPS FOR LIVING WITH SM/CM

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TIPS FOR LIVING WITH SM/CM

Postby tnglitter » Fri Feb 13, 2009 12:39 am

Get a doctor’s prescription for these items – they’re tax-deductible! Save your receipts and the prescriptions!

Daily Living

Measure your tub width & purchase a shower chair – SO much easier to sit down to take a shower & safer too!

Also purchase a long shower head attachment and plenty of grab bars for your shower.

Place a rack of some sort on the floor of the shower in front of the chair to hold your shampoos, soap, etc. I use a cheap coated wire shelf with a dish drainer on top. Don’t forget your razor and a good back brush.

Put everything within reach – stack of towels, washcloths, etc.

Place a non-slip bath mat on the shower floor and on the floor outside the shower and use those grab bars!

A battery-powered toothbrush is great. If you have finger and joint pain, be sure to get one with an on/off “button” and not the type with the “switch”. (The switch is hard to use sometimes.)

If you’re finding it harder and harder to style your hair, have it cut into a short shag that you can style easily with style gel and your fingers.

Then buy some wigs and have fun with them. The newer wigs (even synthetic ones), look very real and you can style them at your leisure and pop them on when you’re ready to go somewhere. (The wigs can be especially important to you after Chiari surgery).

Use unscented FLUSHABLE wipes instead of toilet paper. They’re cheap and so much easier to use. Especially if you have numbness in that area.

Keep your fingernails clipped short unless you have them “done”. It’s always easier if someone else does it.

Pick up a foot bath massager and soak your tired tootsies in scented oil water. (Bubble bath is a no-no with this product.) Soak your hands in scented warm water at the same time. They need TLC too.

Of course if you can afford it, get a regular appointment at your local nail salon and have them tend your feet, hands, toenails and fingernails.

Massages are great but leave the “deep tissue massages” for someone else. Make sure they stay AWAY from your spine and upper neck.

For headaches, many of us use ice packs (kept in the freezer), for eyes and foreheads, and heat packs (put them in the microwave) for your neck and shoulders. Both sold in drugstores. You can also make your own heatpack for neck and shoulders with the tube sock and rice combination - described below.

For a cheap and effective neck and shoulder heating pad, put uncooked rice into a tube sock, fill it up but leave room to tie it at the end. Put it into the microwave for 2 minutes and you have a pliable heating pad for your sore neck and shoulders. Use over and over.

Many on the ASAP message board report relief from leg cramps with Vitamin E. Keeping Potassium levels up is important so you can also eat a banana.

For us women who sweat a lot, that heat rash under your breasts can be treated with diaper rash ointment at night and when you’re at home. If you go somewhere, use an unscented anti-biotic/pain relief ointment. The rash can become very painful if left untreated.

If you tend to “leak” sometimes, be sure to include a mini or maxi-pad as part of your daily wardrobe.

For us “sudden sweaters”, take along an oriental fan tucked into your purse, or one of those plastic battery operated fans (maybe with a mist?).

Replace those doorknobs in your house with lever handles - much easier on the hand and fingers.

An ergonomic computer keyboard (next time you're in the market for a new one), takes some getting used to but is worth the trouble - for carpal tunnel pain and "our" hand, arm and finger pain.

When arranging your clothes, use the drawers that are easiest to reach for items you use all the time. (Same for in the kitchen!)

Wear shoes that are comfortable for you to wear and that you don’t have to tie or buckle. Bending over is a no-no, so if you can lie on your bed with your feet in the air to put on socks – it’s much easier. (Try to make sure no one sees you do this.)

Tennis shoes now have Velcro on them that you just slide in and out of. For dress occasions, low heels or flats are the best and there are some really cute ones out there.

For your blouses and coats/jackets – avoid buttons like the plague. Zippers, pull over tunics, etc., are finger savers. Make sure your blouse is a comfortable length in the sleeve so you’re not fussing with them all day and the blouse length long enough for you. Tunic-style tops are very in style right now – take advantage of that!

Where pants and skirts are concerned – elastic waist is the way to go. They make them in jeans that have come a long way. If you have a top to cover it up – who’s to know? Much more comfortable.

If you can drive, do it. The driver can better prepare for the little bumps and Montana-sized potholes coming up. It’s easier on your body to be able to “shift” and be prepared for those little things. Use a small pillow for your back or neck if you need it.

If you need a cane and you have hand pain issues, purchase one with an ergonomic “hand”. You can find companies that carry these online.

If you need a walker get online again and order one with 4 all-way turning wheels and a built in seat. These fold up to the size of a regular walker, and the seat is a god-send! You can make or order pouches to velcro onto the front of the walker for your cell phone, fan, bottled water, etc. Secure your purse on the seat with straps while you’re in motion. The wheels make it MUCH easier for you to maneuver. They even make an attachment to secure your cane to the walker.

Unless you need a motorized cart when shopping, the easiest thing to do is put your cane in your shopping cart and let the cart support you.

Insist that your purchases are double bagged and bagged LIGHTLY.

Time your outings for half days only. An entire day out is usually too much. Get your nap in before or after you shop, depending on when you go.

Two days in a row of outings can be way too much for some of us. Plan to get as much done as you can in one half-day out. Remember to try and take it easy – you play – you pay!

If possible, go shopping with a friend or relative and ask them to unload your purchases for you, into the house.

Purchase a bed that suits you. If you can afford it, there are beds with adjustable head, foot, softness or hardness of your mattress, and some even come with a mild massage feature. There’s nothing more healing than a good night’s sleep!

Whether you’re a dog person or a cat person, if you don’t already have one – get one. People with pets know why! Just remember to factor in the vet costs (immunizations, tags, SPAY or NEUTER), and food, etc.

Pick up another hobby if the one you have hurts to do. Put down the knitting and get a digital camera. You’ll be busy for years and it’s enormous fun with a good software program. If photography isn’t your thing, there are many other hobbies you can get into. Just make sure you have one and enjoy!

A reacher/grabber helper is wonderful to keep you from stretching too far up and bending down. Again, look online.

Keep lists and keep them handy – by the phone is a good place.

Have a basket on a small table by the door or a place to toss your keys and plug your cell phone in for recharging. Make it a habit.

When purchasing a phone or anything requiring you to push buttons, look for one with raised numbers – the larger, the better. Make sure they light up when you dial.

Get a Medical ID Bracelet. Some are simply engraved with limited information you want on it and others are equipped with USB cards with all your medical information ready to download. In an emergency, it’s essential that first responders know to protect your head and spine, whether you’re conscious or not. Go online to look them over.

Keep an updated list in your wallet of all your medications, dosages, when taken, etc., even OTC supplements. Include your surgeries and any allergies. (Doctors and nurses LOVE this when they ask if you’re on medications.)

A ceiling fan is wonderful over the bed for people who get the sweats in the middle of the night. Layer your bed linens and you can throw off and pull up without waking up fully. If you don’t have a ceiling fan, any fan will do. Just aim it at the bed.

Heating pads are great for those aches and pains that just won’t go away. Make sure you use something between the heating pad and your skin and don’t fall asleep while using it!

Use a pill container for your medications that covers one week – AM and PM. You’ll be able to tell if you took your meds or not, if you’re forgetful. When you “refill” your pill container every week, look for any meds that are getting low and call in refills on those right then.

Available for the kitchen now is an electric can opener and jar opener. This is a VERY good investment.

Get help to arrange your furniture in your house so you can comfortably move around. You may have to take a piece of furniture or two out and maybe put something else in that makes more sense for your new living requirements.

In winter weather, if you have concrete steps or a patio, have on hand a de-icing product that is both pet and earth friendly.

When overnight guests arrive, have their clean bed linens stacked on their mattress. They can make their own darned beds.

Make sure you have a night light on and keep a flashlight by your bed. Don’t try to find your way in the dark in the middle of the night.

Don’t attempt to step over baby or pet gates – they reach up and grab your feet as you go over! They’re evil!

If you have a good day – enjoy it! Just don’t overdo. Remember – you have to pay the piper if you do!

Cleaning

A light-weight vacuum/floor sweeper is good to use on a semi-daily basis. There are also floor steamers you can buy that are light-weight and will clean and sanitize your floors, (great for the kitchen and bathroom!), and they even do hardwood floors now.

Do NOT use your heavy weight vacuum! Have someone come once or twice a week to do heavy vacuuming, carpet and floor scrubbing, and bathtub/shower cleaning. They can also help you change your bedding.

A portable steamer-cleaner designed for your dry-clean only clothes and drapes is another handy tool. You won’t have to take down those heavy drapes and lug them to the dry cleaners! Plus it will save you a whole lot of ironing.

Keep a spray bottle of 1 part bleach and 3 parts water handy in your kitchen and bathrooms, along with a roll of paper towels. Make sure you label the bottle. Spray, let it sit for a minute and then wipe it clean with a paper towel. The surface is now clean and disinfected. No need to lug around a bunch of cleaning tools.

For dusting, get one of those long-handled gadgets – don’t reach!

To scrub floors, pour floor cleaner in a small spray bottle (label it!), then sit on the floor and work in small areas using an old sock that is missing it's mate.

While taking a shower, to clean it (since you're already there...), use an old shower scrunchy and face scrubber. No fumes and the steam helps clean.

When cleaning anything made of tile, use an old toothbrush and toothpaste. No fumes.

After you're done with your small coffee containers, keep them to store small amounts of pet food, kitty litter, laundry soap, paint, etc. (Label it!) Much easier to use on a semi-daily basis than those big, heavy containers of cleaners.

For a fresh, clean smell in your home, no need to buy those expensive deodorizers. Load up your old crock pot with fruit rinds and your favorite baking spice and some water. Let it cook with the lid off to fill your home with a natural fruity scent.

Make sure you stagger your household chores and take frequent breaks. If you get tired – quit.

Traveling

For long car trips, a massage/heat chair pad can help a great deal. With an adapter you can plug it into your cigarette lighter.

If you can't drive, call shotgun and watch out the front windshield. Fresh air from the air circulator, A/C, or cracking your window will make you feel better.

For motion sickness, the following have been suggested (other than the usual OTC and prescription meds): Candied ginger, gingersnaps, peppermint sticks, peppermint candy, peppermint Tums, saltine crackers, and a product called "Sea Bands". These go on your wrist and apparently using the pressure point theory, prevent nausea.

Make sure you take along your small "comfort pillows" for your neck and/or back.

Surgery and Hospital Stays

Most hospitals have cots they can bring out for a care person to stay in your room with you. Take advantage of this. Orders and prescriptions get messed up all the time – you need someone with you to take care of you.

If you smoke – let the nursing staff know and they’ll get a nicotine patch for you. It really does work and makes everyone happier. It’s tough to sneak out of the ward dragging an IV stand, urine bag, and oxygen bottles, just for a cigarette.

Pack 2 or 3 changes of 2-piece pajamas. The shirt should be short sleeved, loose and open in the front or go over the head. The nurses will help you into it, avoiding pulling out tubes and IV’s. Bring a robe (throw it over your shoulders), for walking around when they want you up.

Don’t forget your toiletries – shampoo, conditioner, soap, razor, deodorant, etc.

Make sure the nursing staff briefs your companion on the call buttons. For instance the “Code Blue” button does NOT dim the lights. (Yep – it happened to me.)

You will be semi-out of it for a couple of days, so count on your companion to be your representative. Make sure they double check all meds given to you and follow your surgeon’s orders.

Watch for drug interactions. Also if you’re allergic to something, make sure what they’re giving you isn’t closely related to that medication you can’t take. I had “Extreme headache reactions to Percocet and Flexeril” ON MY HOSPITAL BRACELET even. They gave me something with Percocet in the list of ingredients. I had (of course) a severe reaction headache (and my face was swollen) for a week.

You will have to walk the hall (with assistance), shower and have a bowel movement before you are discharged in most cases.

Before you’re discharged from the hospital, make sure you have new prescriptions and a follow up appointment with the surgeon. The surgeon normally talks to the patient and his/her companion right after the surgery, but you’re so out of it you’re lucky to remember seeing the surgeon at all and your companion likely isn’t into the terminology. Request a copy of the surgery report as soon as it’s available.

At Home After Surgery

Set up a large counter top beside your bed. I used a large wooden cutting board on top of my night stand to increase the surface space. You’ll need room for your phone, remote controls, a water glass, your medications, a lamp, pen and paper, tissues, books, etc. Don’t forget a bed/TV tray for your meals.

When sleeping, turn the ringer off on your phone. Let the answering machine get it. Let the people who are looking out for you know you’re doing this, so they won’t come and break down your door while you’re napping.

If you live alone, have someone check in on you every day and help you out a bit – maybe bring you dinner? And TAKE IT EASY!!!

Depression

Most surgeries are followed by periods of depression – no one knows why – it’s just that way. So you can expect this.

Try to get into your hobby.

Spend lots of time with your pet(s).

Sleep it off – sometimes your body is just worn out.

Post to the ASAP board about how you feel. You’re not alone and we absolutely understand! You really don’t have to explain it to us – we’ve all been there and are there for you 100%!

If it’s unbearable – CALL YOUR DOCTOR! You may need simple medication adjustments. Don’t risk your life with depression!

Family and Friends

You can talk until you’re blue in the face, hand out brochures and web sites like candy and some will just never “get it”. Others will get a bit of it (they haven’t researched it as thoroughly as you have), just enough to scare them and they change how they interact with you.

The ones in your life who really, really care enough to try and learn what you’re going through should be cherished and told so. They are your true friends.

Keep positive people and situations around you. Get rid of all negative energy in your life. Surround yourself with people you love and who love you. This will help immensely in your healing process and besides, who needs all the negative stuff and the drama?

Of course, the ASAP message board is always here for you! Count on us, even if you have excellent outside support. You could even make a difference in someone else’s life.

Don’ts

Ohhhh – the subject no one wants to hear about. But what you have is a life-altering condition and you WILL have to face that and change some major things in your life. You will find people on this message board who do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:

NO roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, etc. Anything that “jars” your head and/or spine is a definite no-no.

NO water skiing, snow skiing, snow boarding, sky diving, bungee jumping, etc. (Just trying to cover all the basics – you get the idea.)

NO contact sports.

NO Chiropractor!

NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.

NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.

NO moving around in the dark!

NO putting yourself into stressful situations or relationships. If you’re in one now – get out. You don’t need the stress.

NO twisting your spine – try to keep a good posture with your spine lined up and straight.

NO bending over. If you absolutely HAVE to get that dust bunny off the floor right this instant, lower yourself to the floor by bending your knees – not your back.

NO flipping your hair. If you must get hair out of your eyes or you’re simply flirting, do so with your fingers. Much classier anyway. Or you can always get your hair cut if it bugs you.

NO sudden spinal/neck movements.

DON’T try to keep commitments when you’re feeling badly. If they’re good friends, they’ll understand. Mind, give as much notice as you can, but don’t be guilted into going somewhere when you’re having a bad day. Listen to your body.

Look for more helpful cleaning and living tips on http://www.wacma.com/
Last edited by tnglitter on Fri Mar 13, 2009 11:45 am, edited 10 times in total.
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby mindriot » Fri Feb 13, 2009 4:17 am

rhonda,

this is fabulous information, some stuff i've never even thought of or have been embarassed to start doing.

thank you so much for this post, i'm going to print it out.

niki
i am not my illness, i will rise above.

sm C5-C7 | cervical DDD | pineal cyst | L5/S1 bulging disc | asthma | depression | Raynaud's | chronic pain | chronic allergies
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tattoodlb1 » Fri Feb 13, 2009 7:20 am

Hi Rhonda..

Wow, this is great! You certainly took alot of time getting this together! Thank you.

I hope you are feeling well and having a good morning!
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby kccmass » Fri Feb 13, 2009 8:34 am

hi rhonda,

this is great! i do most of them already. i learned here from angela mack that extra vitamin e is great for leg cramps... i don't go to bed without it.

thanks again.

k
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Fri Feb 13, 2009 9:54 am

tattoodlb1 wrote:Hi Rhonda..Wow, this is great! You certainly took alot of time getting this together! Thank you.I hope you are feeling well and having a good morning!


See how creative you can get with 16 days of no electricity? :lol:

I SO missed my TV & computer! :(

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Fri Feb 13, 2009 1:53 pm

Thank you so much! I printed it out too!!
Now I can replace to other multiple lists that I had 'somewhere' ... this one though is much more together and thorough!!
AND I won't lose this one! lol
this is great! thank you!
Terry Lynne
*I am not my pain. I am not my past. I am that which has emerged.*
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby mbgc1 » Fri Feb 13, 2009 4:02 pm

Thanks for this, it is so informative!!!

With surgery looming, I need all the advice I can get
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby allymiddy13 » Fri Feb 13, 2009 6:40 pm

Thank you so very much for posting that! I read it to my fiance and we both found it so informative! It made me smile while reading it. I really appreciate all the thought that you put into that. :)
Tiff in PA
Syrinx T2-3 to Conus Medullaris
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Fri Feb 13, 2009 11:36 pm

Anyone with their own tips, chime on in. I know there's still a wealth of information out there that I've forgotten or don't know about myself. I don't have CM, for instance - there's really nothing more I can contribute to a CM'er looking for help on how to live with it. C'Mon, you guys - share!

I'm going to add all tips to my original post and hopefully we can get someone (ah-hem admin), to trim my name off and pin it into place when we're done with it. Credit going out to ALL ASAP members of course. That one post could have enormous potential to help out so many people who come through here! After all - that's what we're about.

Think about it. When you first found this place, how terrified you were and all you wanted was information and understanding. It takes forever to find this kind of stuff to help you out while you're researching. This information is all over the place and some of it isn't even "out there". It's "here" - experienced and proven. Wouldn't it have been wonderful to have this waiting for you to find - all on one post to print out?

So get busy and post your own tips! :wink:

Thank you,
Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Sat Feb 14, 2009 4:05 pm

I have a question - next month my grandma turns 90 - and we are all going by car to alabama - as i get carsick just by going a few blocks now - anyone have any ideas on how not to get car sick going a few hundred miles????
(not going is just not an option!!!)
Terry Lynne
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby phyrehawke » Sat Feb 14, 2009 6:24 pm

Congrats on your grama making it to 90! I understand not going not being an option. My Grt Grama turned 100 a few years back and the travelling was...interesting, but I was glad I made the trip.
For nausea, candied ginger can be a wonderful thing. Gingersnaps have less ginger, but many people say they work too, as well as peppermint stick and candy.
Just know that a LOT of candied ginger can um, loosen the bowels.
Don't look in the car, or at things near to the car, but look at the horizon. That can really help cut down on nausea, but if you are driving through a swampy/forested area I understand from experience that there really is no horizon, just a wall of trees.
I highly recommend using a neck pillow in the car if you have cervical SM...anything to help buffer "bounce", that can also help cushion the inner ear which can alleviate car sickness/dizziness/nausea.
Then there is always meclizine...an OTC anti-nausea medication available cheap at any pharmacy, check with your doctor first if you take other medication.
And Pack light. Don't carry anything over-the-shoulder no matter what it weighs.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Sat Feb 14, 2009 7:36 pm

Terry,

Congrats to your grandmother - 90 years old! The women in my family are long-lived as well - great grandmother was 106 when she passed, my special grandma just passed last week at 97, and there's one out there that's so mean she will likely out-live me. :lol:

Ride in the passenger seat, not in the back. Call shotgun first and be out there with your seatbelt on when the others come out the door. :wink:

Oh - and take crackers and saltines and the like - no sugars. Oh - and crack the window by you. Fresh air will refresh you.

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Sat Feb 14, 2009 8:07 pm

Thanks for the tips!

and Rhonda - sorry to hear of your special grandma passing!
I will be a mess when mine does. She and i are very close.
Terry Lynne
*I am not my pain. I am not my past. I am that which has emerged.*
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tattoodlb1 » Sun Feb 15, 2009 7:38 am

I have found excellent relief with a cigarette adapter plug in massage seat with heat..... this helped me get to NY which is a 3+ hour drive for me.. It didn't
take the pain away completely, but helped... as far as nausea, I like peppermint Tums when I'm a passenger... Also you can try dramamine if you are motion sick.....

Wish you the best and give your Gram a hug from me!!!
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Sun Feb 15, 2009 10:05 am

Thank you.
I had thought about purchasing one of those for the car - it is good to know it would help!
Terry Lynne
*I am not my pain. I am not my past. I am that which has emerged.*
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