Category Archives: Multiple Chemical Sensitivity

Nose Blind?

I, and several other bloggers who suffer from multiple chemical sensitivity, talk about how hard difficult it is to navigate  public places and deal with the multitude of fragrances both in the buildings themselves and on those in the buildings. Have you ever walked by and thought the person you just passed must have bathed in perfume?  Since becoming ill I have thought that these people have masked to chemicals or have simply lost the ability to smell. Therefore, they keep putting on their fragrances until they can detect the fragrance.

I remember returning to my last workplace after becoming ill and being absent for many months. I had gone to gather my things because it was obvious that I would not be able to return to work. I walked in with my mask to gather up my belongings. Suddenly I realized that their were fragrances. The fragrances were everywhere I turned. They were overpowering even with my mask on. I quickly walked out. My fellow co-workers wanted to visit with me. I had to stand outside and keep them at a distance. I asked them if they had always worn perfume? They all replied that they had. Why hadn’t I noticed before? Why didn’t I notice the odor of the paint that was being applied to the door facings while I sat at my “new” desk with “new” carpeting still being laid down around me? My only answer is that my sinuses, because of so many infections and surgeries, just could no longer detect anything. I was sick everywhere I went but had no idea all these chemicals were adding to my body’s already weakened system and over all body burden.

It wasn’t until recently when I had a bad night and could not sleep that I turned on the television and heard a commercial. AHA! There was the answer. I  had been “nose blind” due to all that my sinuses had gone through. This also explains why so many others not only where perfume or cologne, but bathe in it. They are “nose blind” until they get to a certain level of fragrances.

 

The commercial was for “Febreze”. The person was talking about their pets and the odors they caused. The person said she had become “nose blind” to all the pet odors. When friends came to visit it was like visiting a place with twice as many animals. The answer, of course, was to just spray the house with “Febreze”!

The chemical industry is bombarding us with more and more chemicals on a daily basis. I forget the number of new chemicals that are introduced each year; the number is staggering. Dr. Rea said once that we were just the tip of the iceburg so to speak when he talked about chemical sensitivities.

We need to stay vigilant and continue to speak out about the dangers of chemicals and the debilitating effect they have on us.

 

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Thank You For Following Me!

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I have had many new followers in the past week thanks to the I Am A Writer’s $300 Holiday Cash Giveaway that I am participating in. Following my blog is my entrance requirement to the giveaway. I would like to say “thank you” to all my new followers. I hope you will continue to follow along and learn more of my journey with mold-induced illness and multiple chemical sensitivities through my blog posts and my book.

Thank you also, to my loyal followers and especially to those who take the time to not only read my posts but comment and re-blog them.

Sewing: A Tale of Two Lifetimes

I have talked many times about how I used to sew so many different things from clothes for my children and myself to shirts for my husband. I sewed Halloween costumes, made curtains, and stuffed animals and dolls.

After becoming ill, I began having issues with visual and sensory over-stimulation due to the mold exposure. I could not look at a pattern piece with its shape andthen place it on a patterned piece of fabric and decide how best to lay it out without having anxiety attacks that led to tears. I gave up sewing because I just could not manage it. What used to be a calming thing to do became a nightmare of gigantic proportion.

Scottish Doll

Scottish Doll

This doll (made nearly 20 years ago) was  for a friend who wanted a Scottish doll. I took a Raggedy Andy pattern and began designing. I took the shirt that closed in the back and made it open in the front with color and buttons. I used the same pattern and designed the jacket first out of muslin and then out of tweed fabric. I bought red gingham fabric and fashioned the legs to give the appearance of socks. I practiced again on muslin to fashion a kilt that would fit the doll and then using the precious piece of his clan’s fabric made the kilt.  The hat was fashioned out of felt and I used orange yarn to make his hair and beard. My father using his upholstery machine and know-how made the bag.

Back of Doll.

Back of Doll.

It wasn’t until my first granddaughter Sadie was born eight years ago that I attempted to sew again. I wanted to make her a dress. I was going to be a grandma that could make things for her. My first attempt was a simple pattern with bloomers.

First Dress

First Dress

Then I wanted to make her first birthday dress which was a huge undertaking. It was made of coordinating polka dots (blue with white and white with blue). It also had many details. I was determined that this grandma was going to figure out a way to sew again.

Birthday Dress

Birthday Dress

An American Girl Witch

An American Girl Witch

This same granddaughter asked if I would make a Halloween costume for her American Girl Doll Sage last month. She wanted either a witch or pirate costume. Looking online for doll patterns that would work for American Girl Dolls, I found several. Much to my chagrin they were $17.99 on sale for about $8.99. Still too much for a doll pattern. Armed with my muslin I began trying to create a simple dress and cape. After several attempts, this was the end product. I presented it to my granddaughters (because sister needed one for her doll as well). She loved it. Of course she asked where the hat was and I told her that grandma just couldn’t figure it out. Had this been a request of me ten or eleven years ago, I would have just sat and worked at it until I had a hat.

While my sewing now resembles two different lifetimes, I am so thankful that I have recovered enough to be able to sew again.

And isn’t this the season for thanksgiving? I am so thankful for the things I have managed to get back into my life. I am thankful for my family and the friends who stood by me. I am thankful for my wonderful doctors.  I am also thankful for those who I have met and the lessons I have learned because of this illness. I am thankful for all you who follow along with me on my journey and those who have purchased my book to learn more of my journey.

Blessing to you all!

 

And The Winners Are….

AndTheWinnersAre

The Allergic to Life Giveaway is over and I am excited that there were 496 entrants in the Goodreads Giveaway. Goodreads selected the three winners and all books are on their way.  One of the winners is a fellow Rave Reviews Book Club member, Kenneth Kerr. Congratulations Kenneth your book is on its way!

During my Giveaway, I promised that I would also give away three e-books. Using a generating tool, I entered the names of all the contestants who commented on my giveaway blog posts. I have sent an email to each winner with information on how to claim their prize. Congratulations to:

Jill Ward

Colleen

Ruby Benasky

Because of the number of those commenting, I chose to have one more name selected. I would also like to congratulate: Princess and the Pea.

To Thin Or Not Too Thin? (Part 1)

Hello Everyone

I am still dealing with my partial deep vein thrombosis. In my last post dated October 1st, Be Careful Around Sharp Objects, I talked about discovering that my INR (prothrombin clotting and international normal ratio) was at 5.9 and I was to stay off the Warfarin for 2 days and retest on Friday, October 3rd. I did the retest and my level was still at 5.9.  My doctor had me to continue to stay off Warfarin through the weekend and retest on Monday.  Monday my level was 4.3 (still too high).  On Wednesday my level had gone down to 3.7 and my doctor’s MA phoned and said I was  to start up again but at 4 mg.

As I have said many many times, you need to listen to your intuition. Your gut does not lie. After doing some research I learned that my antifungal medication could have an affect with the Warfarin causing my blood to be too thin. I could not stop the antifungal without risk of a recurring infection.  I phoned my doctor’s office again and asked to speak with the doctor. I explained my sensitivities to medication and what I had learned about the antifungal medications. She agreed to have me take 2.5 (half of my 5 mg) tablet for a week and then retest.  I had my blood drawn this past Tuesday because I was meeting with the hematologist for the first time. My husband needed my car on Tuesday so I opted to drive the truck.  I got to the doctor’s office only to find that I had my necessary paperwork, a steno pad for notes, but not my Kindle (it was in my car). Following are the notes I wrote while waiting to meet my new doctor, the hematologist.

The first thing I notice about the waiting room is that it is quiet, there is no carpet, and only a few others are in the waiting  room along with me. Then I see the sign on the counter. It says something about being patient because the wait could be an hour. I can watch old reruns of Bonanza or I can sit and try and pass the time writing in my steno pad. Maybe I will start my blog post that I had planned to do a few days ago. My doctor is a Medical Oncologist and Hematologist so there is a lot of serious treatment going on in this office. A woman in a wheelchair has just been pushed into the waiting room. And of course the first thing I notice is the can of Diet Dr. Pepper in her hand! I am containing myself. All I want to do is run up to her and shout out how dangerous this is for anyone and particularly someone with health issues. Of course, I am sure this won’t go over well.  I can just see her face as she looks at this woman hiding behind the mask telling her what she should or should not be drinking.

The time seems to be dragging on. I work on this blog draft and I work on a short story. Anything to keep my mind occupied and off the reruns and what the hematologist is going to say about my leg and all the labs that have had me scared to death ever since I first learned that I have two mutations that can cause blood clots as well as a possible Protein S deficiency (although a test years ago said I didn’t have it).

Finally, the MA comes to get me. I am led to the back and all my vitals are taken. My blood pressure is 143/80. This is high for me.  Is it because it is late in the day? Is it the stress of meeting this new doctor and not only having to discuss my current problem but filling her in on all my past history? Is it the Warfarin?Then I am asked to stand against a wall while she takes a picture of me. Smile she says and I laugh to myself. Who would know if I was smiling or not behind the mask? I am then led to a room to go over the paperwork I had filled out and the list of my many allergies and sensitivities. Okay…she wants me to go over each medication I have placed on the list and tell her what kind of reaction I get from it because she has to list all this in the EMR. We are going to be here all day just doing this. Finally she says can you tell me which are the most severe. Taking the paper and pen I begin putting an “S” by those that have caused the most severe reactions. As I do so I say things like “this one sent me to the ER”, “this one caused photosensitivity”, this one sent me to the ER” , etc. until I am finished with the list. The MA tells me the doctor will be in shortly to talk with me.  By now I have been in the office about 45 minutes, something I am not accustomed to since Dr. Spitzer and Dr. Butler see me as their first patient.

The light in this room is so very bright! I can hear the clock on the wall tick tick ticking the seconds and minutes away. Between the light and the ticking of the clock I can feel my body being overstimulated! Should I turn off the light? I desperately want to drag a chair over to the door, step up on the cushion and yank the clock from the wall.  Oh how I wish I had my Kindle. I could distract my mind from the clock if I could only just sit and read. My eyes look around the room in hopes of finding something to distract me. There it is. Sitting at the sink is a bottle of antibacterial soap. Oh, please don’t let the doctor come in and decide to use the soap. Is it possible I can stop her first? I can hear chatter outside my room. There is so much going on that my poor brain is in overload and I feel exhausted just from the noise and light. I am so thirsty! I don’t dare drink anything because I cannot risk having to go to the bathroom. I really want to be here and see this amazing doctor yet my body is yearning for quiet and dark.

The doctor comes in (continued in Part 2).

I apologize if my thoughts are scattered and this seems to ramble on.

 

 

My “Allergic to Life” Giveaway Ends Soon!

Hi Everyone

First let me thank all of my new followers. I have been away dealing with my deep vein thrombosis.  I will write more on that after I meet with the hematologist tomorrow afternoon.

It is hard to believe it has been a year since Allergic to Life was published. Where did that year go? So much has happened since then.  If you haven’t already signed up to receive one of three signed copies or the chance for one of three e-book copies, please read the giveaway information below.

To celebrate this amazing year and all the wonderful people I have met, I am giving away three signed copies of Allergic to Life (US Only) on Goodreads.  I am sorry that I can’t do signed copies for those of you outside the US.  I am going to also give away three e-book copies to anyone outside the US. To receive an e-book copy, simply leave a comment below on why you would like to receive a copy. The contest will run from August 30, 2014 through October 30, 2014, my birthday.

Is this reaction Histamine worthy?

How many of you remember the Sponge Worthy  episode from Jerry Seinfeld? The whole episode revolves around the discontinuance of the Contraceptive Sponge.  Elaine stockpiles cases of the “sponge”.  She goes to every pharmacy she can find to buy whatever is left. Then suddenly she is faced with the dilemma of whether or not her date is “sponge worthy”. Does she dare waste one of her precious sponges on him.

Recently I noticed that my vial of histamine was getting low.  I emailed an order for more. I was told that because it had been too long since I was actually seen in Dallas, I would have to return for a visit before I could get any more.   A visit to Dallas is not possible now. I am working on something else that may help me.  In the meantime, I have to decide whether or not a reaction is “histamine worthy”.  Do I try to ride out a reaction when I normally would have just given myself an injection and gone on about my day? OR Do I give myself an injection and hope I don’t have any reactions that will require histamine?

Just last week I had a reaction to someone’s cologne/perfume/whatever in my doctor’s waiting room. I went outside and was coughing and gagging so much that I disrupted the dentist in the office next door. He came outside to see if I was alright and to see if I needed any help. To my dismay I only had my inhaler and had completely forgotten to bring my histamine with me. By the time I got back into the office my usual BP of 112/70 was 149/90.  I was stuck letting myself ride out the reaction when it would have been so much nicer to have calmed my body down.

What types of situations have you been in where you have to decide if something is “sponge worthy/histamine worthy”?

When it Rains it Pours!

Well it has definitely been pouring at my house and I don’t mean rain.  I have been dealing with an ankle that has been swelling off an on for the last few weeks.  At first we thought I must have twisted it.

This past Wednesday, my osteopath/acupuncturist decided that we have waited long enough.  She thought because it was warm that I might have cellulitis (an infection of the skin or tissue). She ordered a round of antibiotics (Ceftin). I had taken it about six weeks ago or less for a sinus infection that would not go away and didn’t react to it. She also decided to be safe and have an ultrasound done on my leg to rule out a blood clot.

Thursday morning I started the antibiotic and Thursday afternoon I went to have the ultrasound done. I walked into the room and the technician told me that I would have to remove my jeans and cover up with the sheet. I told her that I didn’t want the sheet on me and asked for a paper sheet which she didn’t have.  She left the room and came back a few minutes later with a package of paper hospital gowns. She proceeded to place one on the bottom part of the table and one on the top covering the table and the pillow.  She then handed me another to use to cover myself up.  She also used the most sensitive gel she had (still left me with itchy legs).

By yesterday morning I was feeling some stomach upset from the antibiotic. Yesterday afternoon my doctor phoned to tell me that I had a partial deep vein thrombosis.  I could stop the antibiotic but I needed to be on a blood thinner for six months. I told her that I had to think about what my options were. I phoned my internist and had him look over the test results. I also phoned my ENT (both of these doctors have dealt with me from the beginning of this illness). My ENT felt that I should use Coumadin because it was the older of the drugs and less likely to cause as many problems. Also Coumadin is the only drug they can reverse with Vitamin K if my blood becomes too thin. My internist called me back last night saying the same thing and also that he thought it looked like an old clot that was healing but said I still needed to do blood thinners.

Last night I was up all night with severe stomach cramps. At 2:00 a.m. I decided to go find the paper that came with my medication. WONDERFUL! This medication can cause a condition called C-Diff (from killing off too much of my good bacteria and lead to a type of colitis). It can happen while taking the medication or a month or more later. So did the three doses I took cause my stomach issues or was it a combination of those three doses and having taken the medication six weeks ago?

I spoke with my osteopath today. She wants me to wait until Monday to see if my stomach issues calm down before attempting to start Coumadin. If my stomach issues are not better than I need to be tested for C-Diff.

I have spent most of today in bed sleeping either from the fatigue that the antibiotic can cause or that plus being up all night with stomach cramps. I will keep you all updated as I start taking the Coumadin. The usual course of treatment is six months. My osteopath has agreed to do an ultrasound monthly or every six weeks to determine if we can stop it early and get me off the medication.

I am not proofing this post because I am just too tired and feel the need to head back to bed.

Are you 1 in over 1,000,000?

In honor of Invisible Illness Week, I share this video with you.

 

Homelessness Part 5: First Aid – could be graphic for some – revisited

In this final installment of Vanessa’s five part series, she discusses first aid and what she feels is paramount to survival on your own.  I first met Vanessa on Planet Thrive.

This is the final installment of a five part blog series on homelessness and survival.  In this section I will address first aid as a homeless person with limited resources.

Disclaimer:  the advice in this section does NOT constitute medical advice.  Please contact 911 or local emergency personnel or your physician if you are having any medical emergency that requires professional medical intervention.

Since I am now uninsured, I informed my doctors that the only way I was going into a hospital was if:

A – I have something large sticking in me.

B – I have something that belongs internally coming out of me.

C – If I am bleeding profusely and cannot stop it. (major artery)

D – If I have broken a major bone needing surgery and/or setting (toes and fingers don’t count).

E – Large open wounds that were beyond my ability to stitch shut (yes, I will stitch some of my wounds shut). i.e. large puncture wounds

F – An infection that either will not go away or is getting worse.

G – I am bitten by an extremely venomous snake or insect (Black widow and rattlesnakes come to mind)

H – I am bitten by an animal. (this includes being mauled by a bear or cougar).

I – Extremely sick to the point of utter incapacitation by pain, dementia (would I know to call for help?), or illness OR death was imminent if I don’t do something.

Everything else I will try to do myself.  These are my general rules and I do not recommend others following these, especially if you have health insurance and do not have to endure prolonging going to the hospital.

Kidding aside, I know that prolonging necessary medical treatment will make whatever I have worse and harder to medically manage, possibly leading to further complications.  The harsh reality for me is that I am uninsured and I have MCS.  I have been in a situation where I told medical staff that I had MCS and was treated like a child.  An x-ray tech that came to my room was swimming in cologne and I asked for him to open the window and he would not.  He pushed me here and there to get the x-ray while I was trying not to cough.  As he left he said, “There’s nothing wrong with you” even though I was spitting up phlegm right in front of him.  I will NOT endure this again.  This is why I came up with the above list and shared it with my doctors so if they received a call that I was hospitalized, it was serious.

I strongly recommend everyone to take first-aid courses if possible, learning CPR and the Heimlich maneuver.  Homeless people need to delve a little further by reading about wilderness first-aid when help is hours if not days away.  In many of the places I stay the best possible response time in usually 2 hours for them to get to me.  The things that I have learned are stop gap measures to enable me to get out to where EMS can reach me faster or until they reach me.

I will cover what I carry in my first-aid kit and suggestions for reading material and resources to get educated on what to do in an emergency.  Again, this is not a substitute for taking first-aid classes and/or doing your own research.

My first aid kit, left to right:

* Various size latex free band-aids (cloth), a couple of the transparent bandages.

*Quick Clot bandage for larger wounds which contains a compound to help blood coagulate faster.

* Steri-strips for butterfly closures (using the strips to close larger wounds that do not require stitches).

* Variety of tapes, different kinds and sizes.  Cloth adhesive, fabric adhesive, etc.

* Two small vials of baking soda (for upset stomachs or heartburn or insect bites)

* Cough drops

* Tincture of Iodine

* Alcohol and Benzalkonium Chloride (from Dr. Rea’s) wipes

* Latex and non-Latex gloves

* Large feminine hygiene pad (for gynecological emergencies or great for large chest or abdominal wounds as an emergency field dressing). (Should carry two)

* One roll of gauze and two rolls of adhesive wrap bandages (for sprains/strains).

* Snakebite kit

* Neosporin/Bactracin

* Excedrin and Aspirin

* Cotton swabs in a vial for applying ointments and iodine.

* Large 5×7 wound dressing

* Kit for foot injuries (blisters, corns, etc).  Contains moleskin, band-aids and a needle to pop blisters.

* Dental floss and Ambesol for dental emergencies

Things I need to add yet (as finances allow) – scalpel, EMT scissors (for cutting through clothing if necessary) and syrup of ipecac (for inducing vomiting if poison is ingested), suture kit (a proper one), dental emergency kit (with material to replace a lost filling, temporarily).

Some of these things have expiration dates (like the Neosporin, Excedrine, etc) and it is important to go through this bag at least once a year to ensure that everything is current.

Things I have in my car for quick first aid (not shown)

* Activated Charcoal (for stomach flu or accidental poisoning or uncontrollable diarrhea).  Warning:  drink lots of water with this and it will turn your stool black.

* Vodka (in a Witch Hazel bottle so I don’t have issues with alcohol containers in the car.  I carry the bottle in the trunk)

* A variety of band-aids and moleskin

* Cheese cloth

*Cut strips of cloth from an old shirt, preferably cotton, for making bandages and compresses

* Tweezers

* Needles (for digging out slivers or other small things in the skin)

* An antibiotic salve with all plant ingredients, Golden Salve by Equinox Botanicals

* Azulene oil (from the Yarrow plant), good for burns, wind chaffing.

* Dercut homeopathic cream for abrasions, cuts, rashes

* Traumheel homeopathic salve for bruises and sprains.

* Clay face mask cream (ready to use).  Good for applying on bites, pimples, skin eruptions (easier than making a baking soda paste)

* 100% Tea Tree oil for antibacterial cleaning and dressing of more severe wounds or infected wounds and for tick bites.

* 100% organic, extra virgin coconut oil (Barleans cooking oil).  This is great for sunburns, dry skin and small abrasions, scrapes.  Keeps skin supple and aids forming scabs on wounds.  Also helps to minimize scaring. (but not recommended in grizzly country, smells strongly of coconut).

(note:  I do not carry aloe any longer as there are no longer 100% aloe gels.  They all contain preservatives of some kind and some need refrigeration)

*Astragalus capsules for when I feel like I am getting sick.  Some people carry Echinacea as well.

I recently received an email from my Naturopaths office regarding first aid kits and equipping them with less toxic homeopathic items.  I am copying from her list and sharing this for those who struggle to find acceptable first aid alternatives.

Digestion:

– Charcoal caps or charcoal powder

– Ipecac syrup

Bites and Stings:

-Homeopathic Apis 30c (oral) – for stings with swellings (bee stings)

-Homeopathic Ledum 30c (oral) – For bites (mosquito or spider)

-All purpose herbal salve (either over the counter like Golden Salve or from your naturopath or homeopath)

Cuts, Abrasions and Burns

-Calendula Succus Tincture – dilute with water and clean wound

-All purpose herbal salve (after wound is cleaned)

Larger wounds that need more attention:

-Homeopathic Cantharsis 30c (oral)

For Burns or Sunburns:

-Lavender Essential Oil – Apply 1-2 drops topically to burns

Bruises and Muscle Aches:

-Homeopathic Hypericum 30c (oral) – for shooting pains or nerve pain

-Homeopathic Arnica 30c (oral) – for bruises and muscle aches

Miscellaneous:

-Hand sanitizer called “Clean Well”

-Epipen (prescription needed) A personal note on Epipens.  I used to carry two but they were ruined due to my inability to keep them from freezing or getting too hot or exposed to direct sunlight.  These need to remain at a fairly constant temperature to keep the epinephrine from degrading and becoming useless.  Keep this in mind if you are living outside 100% of the time with no way of keeping these safe.

-Euphrasia Eye drops – cleansing eyes.  Weleda recommended as it comes in single doses/packets.

-Electrolyte Replacement Packets

I do not recommend getting the small first aid kits that you see in stores.  These are virtually useless (except the container can be used for you to build your kit) as they only address small injuries and not potentially life threatening ones.  Outdoor stores and backpacking stores (REI comes to mind) carry more advanced first aid kits, but they are expensive.  I think it’s cheaper to make your own.)

Here are some things I have improvised:

-Deodorant for skin protection against the wind on my face.  I use Alba Botanical with baking soda and lichen.  This does have a slight odor to it even though it is fragrance free (no added fragrances, but the essential oils are what gives it its odor).  It is waxy, but goes on smooth.  It does not protect against the sun.  As always, do a small test patch to make sure you do not break out.

-Duct tape for slivers.  This is ok, but not always effective for deep slivers.

-Oatmeal for poison ivy.  What I did was break conventional wisdom and scraped the blisters with the dull edge of a knife (wiping the blade each time to prevent spreading).  I then boiled down oatmeal so it was thick.  I separated the water from the oatmeal and kept the oatmeal juice.  I placed the warm oatmeal in a cheese cloth and applied it as a dressing, letting it set for 30 minutes.  After wards I would use the water to dab on the blisters (sometimes using vodka to dry them out).  I did the dressing twice a day (or more if the itching was really bad).

-Apple sauce for diarrhea and whole apples for constipation.  The apple sauce is high in pectin and helps with diarrhea.  The fiber from the raw apples help to facilitate digestion and bowel movements.

-Pitch from either the Douglas Fir or Sub-Alpine Fir for small cuts and abrasions.  I have also used the pitch to make an improvised splint with strips of cloth and a large amount of pitch.  The pitch hardened making support for the arch of my foot and the compounds in the pitch helped with the inflammation.  I do not recommend the Yellow Pine, Lodge pole, Juniper or Ponderosa as the pitch does not seem to harden (make sure to have a tree or plant guide to tell the difference).

Again, this is not a substitute for learning first aid on your own; this provides suggestions for handling some emergencies.

Educational Resources:

Wilderness Medicine, 5th: Beyond First Aid by William W Forgey M.D. (available at Amazon.com in paperback)

American Medical Association Handbook of First Aid and Emergency Care by the American Medical Association (available at Amazon.com)

Build the Perfect Bug Out Bag:  Your 72-hour Disaster Survival Kit by Creek Stewart (available at Amazon.com)