Tag Archives: environmental illness

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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It’s an ahem milestone birthday!

I won’t say how old I am but it is one of those darn milestone birthdays. You know, the ones they make special cards for.

happy birthday to me

The interesting thing about this is that since becoming ill, I feel like I am in a time warp. There are many years that are totally lost in my mind. I remember what happened and all the bad things I went through during those years but yet it feels as if they didn’t happen. I shouldn’t be this age! It is like somehow even though my body and mirror tell the truth that indeed I am older, there is something in my brain that still cannot register those “lost” years.

1999 Just getting sick.

I am not complaining about getting older, we all do it. And I am forever grateful that I have made it to this birthday. There were many days that I didn’t know if I would make it through the day, the week, much less to experience this monumental birthday.

IMG_3435

My husband took me to lunch today to a special place where I can eat outdoors and they will accommodate all my food allergies. My daughter is fixing me dinner tonight.

 

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 2

If you don’t already know about the saga of my DVT (deep vein thrombosis/blood clot), please check out my first blog posts:  I’ll take a little “rat poison” with that!, Be Careful Around Sharp Objects, and To Thin or Not Too Thin (Part 1).

As in To Thin or Not Too Thin (Part 1), I apologize for this post seeming a little too long or rambling.

My doctor walks into the room. She is wearing a lab coat over a very smart outfit and carrying a small laptop computer. To my relief she does not walk directly over to the sink and lather up with the antibacterial soap! Instead she immediately tells me that her MA has advised her of my numerous allergies and sensitivities. She asks me if my mask helps and if I need to wear it year-round. I tell her that I wear it year-round but only in public where I need to protect myself from chemicals in fragrances and cleaning solutions. She also asks me if I have ever had a diagnosis of Mastocytosis (one of the mast cell diseases, is a rare disorder of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors). I tell her that I have not.

The doctor (hematologist) sits down with her laptop on the exam table and faces me while I sit in the chair. She beings discussing the ultrasound report from my right leg. The report leads her to believe that maybe this DVT was not new and perhaps in the final stages of healing (something my internist told me when I also had him review the report). I tell the doctor that my father had recently passed away and that I had spent three weeks sitting at his bedside in the hospital and later in a hospice house. I spent as many as ten hours sitting by his side during the night. Based on my history, she believes that this is most likely the cause of the clot. Also if this clot was not a new one, it is possible with all the stress I was under and the grief I was going through that I did not pay any attention to earlier pain or symptoms. The doctor tells me that she is going to speak to the radiologist and see if they can determine if it was an older DVT or truly an acute thrombosis.  It was possible that I might not need any more Warfarin or in the worst case scenario I would need a low dose of Warfarin for three months (not six months). I discussed with her the doses given to me and my intuitive feeling that I needed to take a lesser dose. She agreed that I was correct.

We then began going over my lab results. I had three lab results that had me scared about my DVT and the possibility of future DVT development. The first lab she goes over with me is the Factor Five mutation. She tells me that since there is only one copy and because I am not a smoker or taking hormones, there was very little chance that this was the cause of my DVT. The doctor then discusses my MTHFR mutation. Again since I only have one copy of this she does not feel that is a factor in my DVT. Lastly she discusses my Protein S lab. Even though my level is below the norm (which can also happen during a DVT episode) and because I had a test years earlier saying I did not suffer from Protein S Deficiency) it also was most likely not a factor in my DVT and my Protein S Antigen Activity was normal. We will recheck my level a month after I have discontinued the Warfarin and see what it shows. 

The doctor orders one more lab for me to have done before we meet again in a week (this coming Friday). I am asked to have a D-Dimer (is a fibrin degradation product (or FDP), a small protein fragment present in the blood after a blood clot is degraded by fibrinolysis. It is so named because it contains two crosslinked D fragments of the fibrin protein) and we will discuss the result of this, my next INR and the conversation with the radiologist at my appointment.

At the end of the appointment the doctor asks me when I had my most recent mammogram and if I had ever had a colonoscopy. I explained the colonoscopy issue (just the breathing the stuff one has to drink makes me ill) and my issue with my entire vein swelling and becoming hot and hard with a catheter. She suggested that I should just do a stool specimen for blood and if I should do the colonoscopy that I should go to a University Hospital like Stanford or USCF where they could better monitor me for a reaction or an issue. She was adamant that I not have one done locally as they would be totally unprepared to deal with any issues that might arise.

All in all I feel that the wait and all the over stimulation I enjoyed during the visit was well worth it. This doctor was knowledgeable, quoted the most recent findings on DVT and Warfarin, and completely understood my sensitivities (or at the very least did not make me feel uncomfortable). I am thrilled to have her as my doctor and as the one to manage my Warfarin and INR levels, which I am now only doing once a week.

 

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.

Are you 1 in over 1,000,000?

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

 

An Allergic to Life Giveaway

You all know that I am celebrating the one-year anniversary of publishing Allergic to Life where I am giving away books through Goodreads and my blog.

This week is also Invisible Illness Week.  In celebration of Invisible Illness Week, I am also giving away a copy of Allergic to Life: My Battle for Survival, Courage, and Hope on the Chronically Content blog site.  Please visit this wonderful blog and enter for another chance to win a copy of my book.

National Invisible Illness Week

Today is the start of National Invisible Chronic Illness  Awareness Week which runs through September 14th.

How many of you who are ill with environmental illness, chronic fatigue, fibromyalgia, etc. have been told that you don’t look sick?  I have been told that I look good when I feel horrible.  On one hand I am glad that I am not looking as horrible as I may feel but it is hard to explain to others when you may not look as bad as you feel. On August 3, 2012, I posted on this site “Me in the Beginning” When you look at my picture taken in 2002, it is easy to see how sick I was.  I don’t even think I realized how sick I looked until later when I saw my picture.  I knew I felt bad and something horrible was wrong but looking at myself in the mirror daily the changes were gradual.  I didn’t suddenly wake up with dark circles, a haunting look, skinnier than I had ever been and with yellowing skin tone.

I want to raise awareness that environmental illness, chronic fatigue, fibromyalgia and other chronic illness may not necessarily affect a person’s appearance. It is truly and invisible and silent terror that many go through on a daily basis.  I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.

Toni Bernhard wrote a wonderful article entitled The challenges of Living with Invisible Pain or Illness. She is also the author of  an amazing book, “How to Be Sick”.  A dear friend of mine published her book, Intentional Healing: One Woman’s Path to Higher Consciousness and Healing from Environmental and other Chronic Illnesses, a year before I completed Allergic to Life:  My Battle for Survival, Courage, and Hope. I hope these writings will allow you to know that you are not alone in your battle with invisible illness.

Please take a moment to visit the Invisible Illness  website and read the stories that others have shared. Had I been more aware and on top of things this year, I would have included a blog post on this site as I have done in the past.

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)