Category Archives: Holistic Treatments

The Cost of Environmental Illness

Environmental Illness is costly not only emotionally to the person suffering through it and their family but it is monetarily costly as well.  In the beginning of my illness I was sent to an allergy and immunology specialist by my ENT, Dr. Spitzer.  Our insurance paid for the office visit but did not cover the EPD (enzyme potentiated) treatments.  These treatments consisted of two injections given every two months at a cost of $150.00.  My insurance did not cover the special B Vitamins I needed.  And it didn’t cover the special flours and other items I needed to bake my own breads, cookies, and crackers.  I had been told to avoid wheat, oats, barley, corn, and fermented products like soy sauce, catsup, vinegar, etc.  I began making trips to a health food store an hour from home to buy rice flour, tapioca flour, potato starch, garbanzo bean flour, carob products, guar gum (a stabilizer to replace gluten not found in these flours), and special rings to make my hamburger buns.

Fast forward a bit and I need to take a nebulized antifungal.  My insurance would pay for the nebulizer  ($150) but not the compounded antifungal for the nebulizer ($1200.).  Fortunately, I was put into a a trial that allowed me to buy the antifungal for $300.00 I believe.

Before long I was being sent to Dallas for the first of what would be several trips. I had filed for workers’ compensation but who knew what the outcome would be and if these new expenses would be covered.  My first trip included the cost of airfare for both my husband and I from California to Dallas.  It cost us over $400 to rent a car at the airport for the week my husband would be there (we learned that it would have been cheaper to rent a car outside of the airport).  There was the expense of my husband making a second round trip by air to visit me when my stay was to be extended longer than we had planned.  The cost of my room was $1100 per month for a two-bedroom environmentally safe apartment if I shared it with a roommate.  My stay was nearly four months.  None of these expenses were covered by insurance.  I had to buy organic food and unusual foods for testing when I was rapidly losing foods that I normally ate.  A loaf of yeast-free bread made of water chestnut flour was $7.00.  A water chestnut flour bagel was $3.00.  My bottled water was over $1.00 per bottle. I had to have special shampoos and soaps as well.  Again these were not covered by insurance.  My treatments had to be paid up front and then submitted for reimbursement by my insurance.  Each item I did skin testing on cost me $23.  I can’t even begin to tell you how many items I tested just to find safe foods and that was before I tested molds, pollens, and other inhalants.  I was doing two IV therapies a week at $125 per IV.  I was doing daily sauna therapy that was $35 per session.  I was doing oxygen therapy.  I was going through numerous labs and tests that were also very expensive.  Weekly I would pull out a credit card one that still had room to charge on it), pay the weekly bill, then spend the weekend putting it all together to mail to my insurance.  They paid a percentage of those bills.

I returned home from Dallas with antigens that I needed to take daily (I rotated them using a four-day rotation) and these items were expensive as well.  After having a urine Tricothecene test, I learned that I was continually being made more ill by the mycotoxins on my clothing that had been contaminated from work.  I had  to give away my clothes and start over because the cross contamination of mold and mycotoxins would continue to make me ill.  My mother came over and bagged up all my things.  You can see pictures of this in my blog post, Environmental Illness – Not for the Faint of Heart.  I also purchased a sauna for $3,500.00 that was not covered by insurance but was needed to continue my detox regimen at home.

I bought only a few clothing items because I could not afford to replace my entire wardrobe.

Dr. Rea from the Environmental Health Center – Dallas issued a letter that included a rough estimate of costs that I would incur as a result of my mold exposure to be used in court.  I will include more from that list and other expenses during Part 2.

Environmental Illness – Not for the Faint of Heart

Environmental Illness (multiple chemical sensitivity) is not for the Faint of Heart.  It is such a misunderstood illness and it is a costly illness.  My mold exposure brought about my chemical sensitivity, my severe allergies to medications, my allergies to food, and an increase in my hay fever symptoms.

Environmental Illness cost me so many things.  It cost the loss of of all my things.

My empty closet.

My empty closet.

Bags of Clothes, Shoes, Purses

Bags of Clothes, Shoes, Purses

My mother came over and began the difficult task of taking all my clothes, shoes, and purses out of my closet and placing them in the large black plastic garbage bags.  As she was working on this the idea hit that I should take pictures.  I wish I had taken a picture of my closet full of clothes before we started removing everything.  There wasn’t a spare inch in the closet rod.

Environmental Illness cost me my car (I had cross contaminated my car with the mold and mycotoxins from my workplace).  It cost me my home (I had cross contaminated my home as well).

Some of the most precious things I lost were my old stuffed animals, my dolls, and many of my treasured toys from my childhood.  My photos are stored in boxes awaiting the time someone could scan them for me.

Your health is worth all the money in the world.  Environmental Illness, however, takes all the money in the world to just get through it.  There is the money for treatment that is most likely not covered by insurance, the cost of replacing all belongings (clothing, furniture, a car, a home), the cost for special foods, and the supplements that your body needs to keep working.  This is a lifetime commitment.

These costs are beyond what I could have ever imagined.  We had always had good health insurance.  My treatments were not in the mainstream and many things were rejected.

A future post will break down the expenses of Environmental Illness in greater detail.  It is a post that is going to take some time to write.

What’s in My MCS Emergency Kit?

Not too long ago I read a post about having an MCS Emergency Kit.  The link was posted on sondasmcschatter.  The link connected me with myhealthmaven.

The topic of the post intrigued me so I took a look.  It made me think about what I have as an emergency kit.  I flagged the post and decided I would write more on it at another time.

The hints were to always check your emergency kit to make sure it has everything, to keep a note in your wallet or purse about your illness and reactions (I use a Medic Alert bracelet.), to have an emergency list of contacts (in my cell phone and through Medic Alert), and to be sure all these items are accessible.

What’s in My Emergency Kit

A TYVEK SUIT  (to use if a building I need to enter is suspect or if I accidentally get exposed I can cover my clothes until I can get home and remove them in the garage).  The site listed a change of clothes.  Once I have been exposed trying to find a safe place to change those clothes or to have the clarity is not always possible.  It is much easier to throw on the suit.

LARGE BLACK GARBAGE BAGS to put items in that may have been contaminated  (which once was my purse and shoes because I couldn’t cover them with a  tyvek suit).   They are also great for my passenger’s items that need to go with them.

SMALL GARBAGE BAGS for items that need to be covered to protect me but are too small to use the larger bags.  Once a garbage bag came in handy to cover my daughter’s hair.

MASK – I carry one in my purse but usually have a spare one in the console compartment.  I have been known to use my mask, stick it in a pocket of my jeans and forget to take it out until doing laundry.  I have gone to a store only to have to turn around and go home and get my mask or sit in the car and let someone else go in for me.

HISTAMINE – I carry a pouch in my purse with a vial of histamine, syringes, and an ice pack to keep it cool.

EPI-PEN – The histamine usually is all I need for a bad a reaction but the epi-pen is my back up just in case.

VITAMIN C – I usually have some in my purse but try to keep a small bottle in the car just in case.

ALBUTEROL INHALER – Sometimes the coughing becomes so bad that I need a little extra help with my lungs.

WATER – I keep a glass bottle of water with me at all times.  I use Mountain Valley Spring Water in glass.

The site also mentioned what to do after an exposure.

CLOTHES – I come home, remove my clothes, and put them in the washer with baking soda, my safe laundry detergent and sometimes powdered milk.  I let them soak for a while and then wash.  If I also had on a tyvek suit, it needs to be tossed in the garbage.

SHOWER – I shower to remove as much as I can from my skin and hair.

REST –  I also have learned that eating often helps get the metabolism going and help eliminate things from my system faster.

SUPPORT – If the reaction is very bad, I schedule an appointment with my acupuncturist and also try to schedule an IV of Vitamin C, Glutathione, and Magnesium.

I would like to thank my healthmaven for writing on this subject and sondasmcschatter for sharing it.

WHAT’S IN YOUR MCS EMERGENCY KIT?  

THANK YOU EVERYONE!

Once again, I would like to say thank you to all of you.  My follower numbers have been steadily growing.  This tells me that there are many who want to hear what I have to say about allergies and chemical sensitivities.  It tells me that there are many who are suffering with chronic illness or know someone who is.  It also tells me that there are many who are not sick but want to know more about living a less toxic lifestyle.

Today I say thank you to all my new followers who have signed on in the last month or two.  I appreciate you wanting to learn more of my story and how I have changed my lifestyle.  Please feel free to comment whenever you have  a question or want to share something on a post topic.

I cannot forget all my loyal followers, many of whom have been with me since the beginning of this blog nearly two years ago.  Thank you for all your support and your comments and re-blogs of my posts.

Have a wonderful day.  I look forward to interacting with all of you.  Don’t forget, you can also contact me via the contact button at the top of this blog and leave me an email message.

Thank You

I have noticed today that I have several new followers to this blog.  I would like to take a moment to welcome you and say thank you.  Please feel free to comment on blog posts and ask questions. 

You will see that I have a great group of followers who are amazingly helpful as well.

To all of you, both new and long-time followers, I say thank you for wanting to learn more about my story and environmental and chronic illness.  Your support and encouragement mean a lot to me.

Meet The Author

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Yesterday I did a “meet the author” at High Country Health Foods and Café.  I didn’t sell any books but I had the opportunity to speak to others about molds, chemicals, and food allergies.  I had someone talk about family members that had developed cancers and they were sure the environment played a role in it.  I had someone tell me that a friend suffered from something called Chronic Fatigue and I told her that was one of the diagnosis made on me.

The staff at High Country Health were wonderful and while I didn’t make any sales, I felt that I had the opportunity to share about this illness and my story.  I handed out book marks and samples of dish soap.  You never know whether any of this will equate sales through direct contact and conversation or through second-hand contact (something sharing my story with someone else).

Tooth Update

My husband and I went to the oral surgeon’s office this morning.  This is the one that told me they had no air fresheners and the staff did not wear perfumes or colognes.  I was a little apprehensive and I purposely had not shared my list of sensitivities with them ahead of time preferring to discuss them with the doctor before they had a chance to say no without seeing me.

We arrived at our designated time.  I did not detect anything noticeable while I sat in the waiting room.  Within a few minutes I was taken to a room and again I didn’t notice anything horrible.  The dentist came in (boy was he young) and discussed why I was there and did an x-ray.  He didn’t seem put off by my long list of allergies and sensitivities.  He came back and said he could extract my tooth today.  I told I thought I was there for a consultation and was told that they had actually scheduled me for the procedure.  He went to look to see if they had any epinephrine-free carbocaine.  They had it – so I could have it done then or I could reschedule it and go home and come back.  I knew how difficult it would be for me to make that next appointment.

So, I just went for it.  They allowed my husband to stay in the room.  I loaded my syringes with histamine (which thankfully I didn’t have to use) and we got started.  The tooth wasn’t going to willingly come out so the dentist had to cut it in pieces to remove it.  There was no pain really.  The worst was the horrible pressure.  When it got bad I thought back to my energy balancing days.  I put myself in a state where my breathing was so slow I wasn’t sure I was breathing and took my mind away from the pressure.  All of a sudden it was done and he was putting sutures in.   The dentist was afraid of the dissolvable sutures because I might react to what was in them and opted to use silk so I will be making a trip back next week to have them removed.

All in all, my jaw is sore from having my mouth open and I am bleeding a little more than most because of the lack of epinephrine in the carbocaine.  I am icing my face and taking it easy.  As long as it heals well and no infection sets in I will be fine in a few days.

I am just glad this hurdle is over and I didn’t have any horrible reactions in the process of getting the tooth removed.

P.S.  The dentist said he has seen a few others with a laundry list of allergies like mine but never with histamine instead of epinephrine.

 

Catch-Up Monday: Energetic Shifts – revisited

This post was originally shared on August 21, 2012.  I believe understanding energy and how it works in my own body has had a helping hand in my healing.

On July 19th I posted on the physical and emotional effects of exposure.  Today I want to talk about how these exposures and recovery affect our energy.  We all have energy running through our bodies and illness can cause the energy to be blocked.  During my healing I have done energy work to balance my energetic fields and in an effort to release these energy blocks.  A big energetic blockage happened when I had my hysterectomy.  The incision for the hysterectomy went through the meridian that ran across my stomach.  I learned by accident in one of my sessions, that by moving my legs in a bicycle fashion, it would release some of the blocked energy and calm a reaction when the tremors were unbearable.

Recently I spoke by email with a friend of mine, Jennie Sherwin, about what can be experienced during energetic shifts.  These experiences can be physical in the form of dizziness, fatigue, extreme nervousness, GI upsets and anxiety to name a few.  One can also experience emotional symptoms such as crying, emotional outbursts, feelings of depression and anger.  Energetic shifts can present themselves mentally in the inability to concentrate or process information.  Someone may also experience a spiritual disconnection and for me I also experienced a lack of emotion and inability to cry.

Energy balancing can sometimes relieve these experiences and symptoms as it helped me.  Sometimes it can cause more shifting and different symptoms may occur before relief occurs.  After some of my sessions, I would go home and just sleep peacefully.  Some sessions would cause restlessness and anger as my body was trying to bring itself back into balance.   I remember having difficulty writing as I shared in the July 19th post with a copy of a page from my journal.  If I wrote for more than a few minutes my writing would become illegible and I would find myself once again holding the pen or pencil in some strange and unfamiliar fashion.  After one particular session I returned to my condo to find myself very relaxed and much in need of writing in my journal.  Suddenly I realized that I had been writing for over a half hour and my handwriting had not made its usual downward spiral.  I was so amazed at how my body was responding.

As we heal from chronic illness, our body goes through many changes.  It is important to realize that some of the symptoms and experiences I have mentioned are part of the healing process.  Once I realized what was going on, I was better equipped to deal with them when they would happen and allow myself to go through them without fear but with the knowledge that their passing often led to another step toward healing both physically and emotionally.  I have gone through many of these healing crises over the past twelve years and am sure I will encounter them again as I push myself forward on my healing journey.

Jennie Sherwin is the author of the recently released book “Intentional Healing:  One Woman’s Path to Higher Consciousness and Freedom From Environmental and Other Chronic Illnesses” available from Amazon.

Catch Up Mondays: Mindfulness – Revisited

This was originally posted on August 6, 2012.  I have passed this book on and wish I had kept it for myself.  I guess I will order myself another copy.

About a year ago I saw Goldie Hawn featured on the Dr. Oz television show.  They were discussing a book she had recently written, “10 Mindful Minutes”.  Goldie Hawn had started the Hawn Foundation to support research into developing ways of helping children become healthy and eager learners who can reach their full potential.  A program developed by her foundation, MindUP is used by educators around the world to teach children how their minds work and how their thoughts and feelings affect their behavior.  It gives them tools to help deal with stress, negative feelings, calm their minds, remain focused and develop compassion and empathy for others to ultimately be happy themselves.  I ordered the book thinking it could be just as helpful for adults like me suffering with environmental illness and the depression and isolation it can cause.

The book arrived and I opened it up eager to start reading.  Just as quickly I put it down because I couldn’t stay focused.  I have learned that for me it is best not to force a book (especially one dealing with health and emotional healing) on myself.  When the time is right, I will pick it up.  All I could manage to read during the time were my mystery novels and biographies,  books that took me away from my life rather than forcing me to deal with it.

One night I was lying in bed too tired to be up, too awake to be sleeping and not wanting to watch a movie.  I attempted to sleep.  As I turned to lay my glasses on the night table, 10 Mindful Minutes was there where I had placed it months before.  I picked up the book and started reading.  I found it difficult to put down.

I learned that I needed to be more present in my life, practice mindful sensing (taste, sight, hearing and touch) and the importance of being positive.  I learned more about the brain and the “fight or flight” signals and how easily we can be hijacked by the amygdala in the brain.

The one thing that I know I need to do but am having a hard time getting started so that it becomes a routine is allowing myself ten mindful minutes where I sit and breathe and there are no other distractions.  It is probably the easiest thing to do but the hardest to discipline myself into doing.  Maybe now that I have said it and put it in writing, I can conquer it.

While the book is written with parents in mind for helping their own children grow and be a happier person, I think it is well worth reading for everyone.

You don’t need it, until you really need it

I have talked many times about carrying both histamine and epinephrine with me whenever I leave the house.  Taking histamine tells my body that I already have enough and it keeps me from continuing to produce more thus slowing or stopping a reaction.   Epinephrine is a last-ditch medication when all else fails.  It makes my heart race and because it has been so long since I have even used it I am not sure if I would react to it.

This morning my daughter was running late so I needed to drop my granddaughter off at preschool.  Even though it is just a ten-minute drive across town each way, I grabbed my histamine from the refrigerator.  It is a force of habit.  I came home and immediately put it back in the refrigerator.

The morning was hectic with emails, projects, and laundry.  Before I knew it the clock showed 12:30 and I was supposed to meet a girlfriend at an outdoor café for lunch followed by a trip across town for my acupuncture appointment.  I grabbed my purse, my water, my Kindle (in case I had to wait a bit at my doctor appointment), and off I went.  Lunch was nice and I was lucky because it was a very slow day and there were only two or three tables outdoors occupied.

As I left for lunch, I promised my girlfriend that I would pick her up at her house after my doctor appointment and take her to pick up her car at the repair shop.  I arrived at my acupuncture appointment on time and was taken back quickly.  I didn’t even get a chance to read when my doctor walked in and started working with me.  All was well; I relaxed as the needles did their work on my body and rested.  The timer went off and one of the medical assistants came in and removed all the needles except those in my scalp and my face.  I continued to rest while I waited my turn for the doctor to come in, remove the needles and continue to work on me.

I was calmly laying on the table as she removed the needles and kept patting at the needle sites with cotton because they were bleeding a little.  Suddenly there was moisture on my head and I felt a tickle in my throat and then I smelled it.  I smelled alcohol!  She immediately wiped it off but there is nothing that can be done once it is on me and getting into my system via the needle puncture sites.

I thought I was doing okay until I got ready to sit up and put my shoes back on after she left the room.  The coughing started, the shaking started, the dizziness came on, and a headache started.  I grabbed my purse to fish for my histamine pouch.  It was not there!  I rarely use histamine because I work on keeping myself safe and away from unnecessary triggers.  I continued to fish through my purse and found my albuterol inhaler and took a puff of it to try to calm the coughing.  My epi-pen was in my purse but the reaction was not so bad that I wanted to risk trying epinephrine with the side effect of my heart racing and the risk that I could have a worse reaction to it.

My doctor came in and helped me into a room that was free of the alcohol chemical and I just sat and shook and coughed for about 30 minutes as I waited for the symptoms to ease enough to allow me to drive home.  I also had to phone my girlfriend and tell her that I couldn’t come by for a while because I was in the midst of a reaction.

My doctor felt so bad because she knows I have a sensitivity to alcohol.  It was just standard for her to do this and she did it without thinking.  I am sure this is a mistake that won’t be made again and I know she didn’t do it intentionally.  Still, I had a reaction.

The first thing I do when I leave home is grab my histamine and yet I haven’t had to use it in a very long time.  And the one time I forget, wham I get hit and don’t have it.   I am going to have to be more vigilant.  The problem lies when I get rushed and don’t think beyond where I need to be.