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 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.
So many alternative doctors do not take insurance. Environmental illness doctors, Lyme-literate doctors — forget it. And then there’s the cost of the supplements.
Not only do they not take insurance, but many of their treatments are considered unnecessary.
We are in the process of moving due to my MCS and a acrylic polymer used to control dust in Arizona since this summer. My doctor told me Monday I need to move and by Thursday afternoon we got confirmation hubby can transfer with his current job, found a sister church, a Realtor and a MCS doctor with similar training as my current one plus some.We are heading to Colorado as soon as our home sells. Our Realtor in AZ came by today to tell us how to prep our home for sale and give us the listing price he recommends. My head is spinning not just from reactions!
This acrylic polymer used on dust clings to everything so I am not to go outside even to sit on my patio or work in my garden. When we leave get in car in garage and when return strip as enter and immediately shower and wash hair. Do you think this will wash out of my clothes once we leave or will I need to replace them all before move into new home? Asking my EI doc and other forums for insights on this too.
So in addition to cost of doctors and supplements as Miss Diagnoses mentioned we now have a move as since we asked for it no relocation money. Yet in it all we have seen the hand of God so clearly and quickly order so many details!!
Deb – I wish I had an answer for you about your clothes. My gut feeling is that it probably won’t come out. I know how expensive it is to replace clothes. My wardrobe is so much smaller than before and I have a lot less to choose from.
I am looking forward to your next post. I am beginning the difficult journey of finding treatment.
Katie – It is such a difficult journey. I gathered support along the way through the women I met in Dallas and through this blog. We are all here and you can always post questions. You can also email me at firstname.lastname@example.org if you have a question or want me to discuss a topic on the blog. Bless you on your journey.
And the therapies and the special soaps. The list goes on. It will take me a while to compose my follow up to this post.
I can quickly become allergic to things so I see a needless acupuncturist. This amounts to acupressure on my spine and uses biofeedback to reset my body. I have had good results and two of my friends have had excellent results. What are your thoughts on it? Thanks
I have not used the needless acupuncture. I do see an acupuncturist who is also an Osteopathic Doctor. I get the benefit of both acupuncture and osteopathic manipulation. The acupuncture truly helps me with body pain, my constant sinus issues, and keeping my body in a more relaxed state. The manipulation gently keeps my spine in order as well. I also believe in the IV’s I get containing Vitamin C. Glutathione and Magnesium as well as bi monthly Vitamin B12 injections.
I have not yet tried biofeedback. I have thought about it as well as reflexology. It is just a fine line for me. If I push detoxing too much, my body crashes.
I love acupuncture. Of course, insurance doesn’t cover it, but if I don’t go every week I have much more pain and feel like a truck ran me over. My acupuncturist went to China for a week and I almost had a panic attack just thinking about his leaving. I love my osteopath too — I don’t see him regularly, just when I need an adjustment. I also get massage and PT — all part of the chronic illness money drain. It’s funny, back in 2009, when the worst of it started for me, I was seeing only Western doctors; they all took my insurance, so I had some money left over, but they were often mean and unhelpful. Now I see mostly integrative and alternative doctors, and they’re much nicer and far more helpful, but I’m broke! Aaaagh.
I love acupuncture too. My insurance actually covers part of the cost (at least it does now). I do pay for massage therapy once or twice a month. I would love to go weekly but my budget barely allows 2 tmes a month.
my life mirrors yours
Wow. That is all I can say.
My heart goes out to all of you who are suffering so much. I hope there is relief for you somewhere on the horizon.
Thank you Anne. I am better than I was even though I still struggle.
Wow, that’s very intense! With my allergies, the things I needed to give up are certain raw fruits (apples, peaches, pears, carrots, kiwis, cherries, plumbs…just to name off a few 😉 ). Oh yes, and I had to give up gluten too since I have a food sensitivity to that.
It was heart breaking giving up so many of my belongings but I had to choose “things” over my life. I hope to get to working on the next post this week.
Reblogged this on sondasmcschatter and commented:
MORE GREAT SHARING BY OUR MCS SISTER KATHRYN!!!
I have empathy for you on so many levels. I’ve been working on my bathroom/walk in closet. I already gave away all my clothes that needed to be dry cleaned. I’ve had a shelf of purses that have sat there and I figured needed to be dusted. One of them reeked of perfume although I haven’t used fragrances for years. That one is bagged. I’m getting rid of the rest because when I carry them I notice what ever fragrance I come into contact with gets trapped inside and when I open it in my home — my home is now contaminated. It is amazing what we can take for granted until we get disabled from all these toxins. I hoped as I checked to make sure the purses were empty before I gave them away to find $$$$$$$ what I found in most of them — Benedryl tablets.
Biofeedback can be quite helpful for many things both my son and I have done it. Good luck to everyone going through these issues. If I ever win the lottery I think I’ll build a fragrance free town — you’re all invited. 😀
Now, I would love to come visit in a fragrance free town. It is amazing what it is like to stand and watch your things be removed one by one and tossed into a black garbage just as if they were nothing but trash.
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Thank you for this post Kathryn. I had no idea the extent of what you’ve had to give up because of this illness. How completely unfair!
I’m really glad that you wrote this post, especially because of how well your articulated everything. It gave me a whole new insight into what life is like for you and how much you’ve gone and go through.
You’re a tough cookie, certainly not faint of heart.
Thank you again Katie. I know your life is very difficult as well. I think of you often when I read the facts you are sharing about Marfan’s Syndrome.
Hello! I need to be tested. I know there is mold in my office at work and I have been so very sick!!!! I am at my wits end as I have gone to dr after doctor and had test after test!!!
I replied to your email. You may email me back.