On a Summer's Day

Hello, friends,

It's a lovely day outside and, after a long time away from this blog, I'm inspired to write once again.

While I wouldn't put myself in a room with a burning, synthetically scented candle and other strong chemical irritants -- and perhaps not with a non-burning synthetically scented candle if the scent could be felt by me (some synthetic scents carry an abrasive texture when smelled by chemically sensitive people) -- my chemical sensitivity has gone way down.

And yet I would not linger in front of a laundry vent or in a place where heavy laundry scents were evident.

However, lately I have enjoyed the experience of smelling various chemically scented products for the sheer beauty of the scent -- despite my hard-earned knowledge of the drawbacks.  Still, knowing the extent of the damage that synthetically scented molecules -- whether perceived by the senses or not -- can do to the body, I cannot disregard this invaluable, perhaps life-saving, information.

I'm at the point where I have to make decisions about many such products without the exponentially amplified chemical sensitivity to guide me.  This is progress -- tremendous progress.  I've done not a thing to have earned it, except to have been treated with herbal products for Lyme disease two summers ago.

I wish to leave all of my research/links in place for those whose chemical sensitivity is still active and mushrooming.

My writing here, going forward, will deal with a variety of topics both physical and biological, from an anecdotal perspective supplemented by occasional scientific/anecdotal links of a relevant nature.

I'm very happy to have learned that, as opposed to a fulminating, systemic problem, I have inflammation in one foot due to an orthopedic, mechanical difficulty.  For months, I'd put off looking into the matter for fear that I'd be told I'm a metabolic disaster.

Imagine my surprise to learn that surgery on a little toe, over 30 years ago, left the toe so unstable and strained that I'm walking funny -- the body's involuntary compensation for the weakness and instability of that one toe.  Other toes/parts of the foot grow inflamed as a result of the motoric compensation . . .

The good news is that this can easily be alleviated with a new surgery on that toe . . . which I never thought about and did not know.

It's wonderful when something is not systemic and not a disaster -- just a challenge.  :)

Cheers!   :)

~ Carolyn

      

Trying to Realize

I remember starting this blog in sunny May weather, 2011.  My incentive was high and the words were all stacked up inside of me, ready to be called upon and arranged for posting.  The chemical "burn" of neurological proportions needed to be described for those who had never felt it and who disbelieved that such a chemical sensitivity reaction could occur.

I set about my work, making some headway.  I felt good about this venture.

Lately, I've been getting down in the dumps every time I look at this blog.  I've not been able to work to bring in new readers, because I haven't had any chemical reactivity stories to tell.  I've read those of others lately . . . and I've felt set apart -- left out.

Wait a minute.  "Left out?" I asked myself seriously last night.  "Left out" of chemical sensitivity reactions?  So much so that I have nothing to write about them?  "Do you realize what this means?" I asked myself. 

It's really hard to get this through my head . . . but . . . for the third time or so, I'm reminded that I'm actually doing much, much better.  While I miss that immediate bond with other MCS sufferers which would have inspired me to write and write and write more and more and more about this issue . . .

I've had to shore up my awareness and my gratitude.  I'm getting better.  When will I believe this and actually react to it?   I've been so lonely looking at other people's MCS postings, I haven't been able to work through that and actually embrace the fact that I'm healing from this physiological, neurological nightmare.  Strange to say, I actually think I feel a kind of "survivor guilt." 

So my recovery is dawning on me slowly.  Very, very slowly.  I suspect that, once I can grab hold of the fact that I'm getting seriously better from MCS -- and internalize this as a reality -- only then will I be able to discern what kind of assistance I can best "offer back" to the MCS community through this blog. 

After over two decades of having to give up doing this, and give up doing that, and take time off to let chemical reactions run their course, I've now got all of this leftover sludge in my system.  I'm very disappointed in myself for that.  This probably has a big effect on my ability to rejoice.  So I've set about a walking plan.  I don't care what the experts say -- one walk a day isn't nearly enough.  About six walks a day, for me, would begin to turn things around.  Every so often, I tell myself, "Just put that coat on and get outside."

So I've begun building up my walking length and frequency.  It has to be done.  In rain, in snow, sleet, hail -- whatever.

As I trudge up and down the road, each footstep reminds me that my legs still have power in them, my lung capacity can still expand, and I'm moving forward.

I'm left with questions.  The first one being, "So was the chemical sensitivity actually a peripheral manifestation of Lyme disease?"  I mean this in the same way that one becomes sensitive to sound, light, smells, tastes, and touch when one has a fever . . .   When we're sick, our senses go on red-alert as part of the sickness.  And some sicknesses affect certain bodily systems more than others.

My second question is, "When I took the herbs to wipe out the Lyme, did the herbs also chelate out some additional toxins which had been blocking my ability to recover?"

My third question is, "Did getting well from Lyme and setting everything straight immunologically simply free up my body to put up a stronger defense to common chemicals?"

All of this having been said, I realize I'm not equipped to pronounce on these answers.

These questions will probably be with me always.  I drop them off here in order to inspire both reflection and hope in those who are still suffering in a big way with MCS, and in those who are trying their best to help them.

Cheers!

~ Carolyn

While Feeling Like Eeyore . . .

If I'm truly honest with myself, I'm much more comfortable, in my writing here, with no salutation and no signature line.  I'd prefer to jump right in and, when I'm done writing, just be done.  So here we go:
 
When something happens to hurt me very badly, emotionally, I usually don't want to go back to the person who hurt me and say, "Look, this really hurt."  I'd rather write about it in a nonpersonal way and send it out to the world on the next breeze, so to speak . . . keeping forgiveness in my heart without a lot of emotionalism and fuss.  But -- and this is an important "but" -- I have to satisfactorily make my point when I speak of the hurt -- to whomever.  Clarifying my point, or points, to myself and others -- this is a big thing with me.  Because then, after I've worked it all out in this way, I'll have peace.

It was thus that I began this blog.  I had so many points stored up from so many instances of being patronized, screamed at, flat-out disbelieved, avoided, and picked apart verbally over my chemical sensitivity . . . I had to make those points.  I had to state them, once and for all.  In my earliest pieces, I think I really did that.

The method worked.  I realize there are probably hundreds of cogent points that one can make about the reality of chemical sensitivity; however, I believe I truly addressed the ones that meant the most to me, personally.  I backed up my points with the numerous articles in the tabs up above.

On a cognitive level, this relaxed things.  I no longer had that burning "edge" to state this or that in precisely this or that way to ensure maximum comprehension.

Then I got sick with Lyme and I had no cognitive "edge" at all.  Things were over the top in a brand new way, with swollen legs and feet.  I got the message loud and clear that something microbial was out to annihilate me.

Although the swelling has greatly lessened since the spring and summer, I still have it.  My health feels pummeled.  I get frequent whiffs of hopelessness -- and then I raise my head again.   

Which is why it's so very strange that now, of all times, when I feel completely drained and utterly defeated in so many ways, my chemical sensitivity is still lessening to a noticeable degree. 

I've wondered if, perhaps, the collection of herbal drops that I took steadily for a month or so for the Lyme actually chelated out some serious toxins that had been buried deep in my body.  It was after those herbal treatments that the improvement in my chemical sensitivity really skyrocketed.

Or was it that the chemical sensitivity, itself, had been instigated by chronic Lyme?

I know one thing:  My emotional tenor has not felt this low in decades.  That puts theories of "So you lessened your chemical sensitivity with a more optimistic outlook!" to rest.  I haven't felt optimistic at all.  I've felt gloomy, horrible.  I've felt completely unwanted as a writer, for one thing.  I don't even know why I'm writing this.  It's the equivalent of Eeyore grabbing pen and pad.

Perhaps writing this will turn out to have been "good for me" and -- this would be nice if only it could be so, which I doubt, but let's give it a chance -- for other people, too.

Good News

Hello, Friends,

Having received several herbal treatments for Lyme disease and a tick-borne co-infection, I'm much more alert and mobile than I was a month or two ago.  Just today, I took a long walk which felt "normal" to me again.  Although there are still rings of fluid around both ankles (yes, they look very strange), the fluid is slowly lessening.  There has been much improvement.  Friends -- and my herbal practitioner -- who saw me with my feet puffed up like pillows have noted the considerable improvements.  I'm very, very grateful for this real chance to get well without antibiotics.

But that is not all.

Aside from a chlorine exposure (breathing it in the air) which left my outer upper leg numb for a brief time (until I got away from the chlorine, at which point the nerves almost immediately began to return to life), I have not had to take a single ibuprofen, even after multiple chemical exposures which normally would have laid me low for hours or days:  multiple heavy fragrances on Sunday; chlorine and much cigarette smoke on Monday; between 10 and 20 minutes in a scented-product-using home on Tuesday; between 10 and 15 minutes in another home of liberal, multiple usage of scented candles on Thursday (many scented candles visible and detectable by scent, but not burning at the time) . . . plus sun glare and stress -- and, still, no migraine syndrome.

Even if I were to get a migraine tomorrow, this degree of improvement would still be off the charts, in my view.

I discussed this stunning development with my herbal practitioner tonight.  He confirmed that this tremendous lessening of the chemical sensitivity is a natural result of the herbal treatment, because with it he'd gotten rid of every infection he'd detected in me.  Now, he's helping me battle the residual fluid/inflammation in my legs/ankles. 

I do feel quite well "inside" my body.  This is just so phenomenal to me.

However, never would I therefore begin to "take up" the old chemical products I've long forsaken.  Nor would I remain in a room in which a scented candle is burning, or in a house in which a load of laundry is being done with scented products.  I wouldn't be the slightest bit surprised if I still developed horrendous migraines from these things later.  But the degree of improvement I've already enjoyed -- this is something I could only have dreamed of in prior years.

It's really something.  So I've experienced now, firsthand, that when the body is loaded down with infections and their accompanying inflammation, the body's ability to detoxify is brought almost to a standstill.  When the infections are cleared out, or even minimized, the chemical sensitivity can improve.

It makes sense to me.

Also, I must note, again, that this improvement in the chemical sensitivity began, to a lesser but still noticeable degree, when I began taking a liquid kelp (potassium iodide) supplement to boost the functioning of the thyroid.  Let me also mention, here, something I neglected to mention earlier:  Along with the liquid kelp must come a selenium supplement, which I've also been taking.  The selenium enables the liquid kelp to be activated in the body.

In summary:  The thyroid was checked out and assisted; then, infections (Lyme and at least one co-infection) were discovered and treated with various herbal mixtures.  And the chemical sensitivity lessened.

I report this in the hopes that, somewhere along the way, my own story will help someone else look into his or her own symptomatology and latch onto effective treatments.

Cheers!

~ Daisies

Following the Hope

Hello, Friends,

While announcing a new direction that I hope to take with this blog, I also think it's important for me to mention that I'm presently battling Lyme disease.  This will help explain, in advance, any delays in my ability to post.  Moreover, Lyme disease can be an important factor in the subject of MCS.

Although there is pain right now, I believe I'm at a very good place in my treatment and I have real hope that things will soon be better.  My particular version of Lyme settled in my lower limbs, mostly my foot bones and soft tissues.  I've had bilateral calf, ankle, and foot swelling which has resembled that of kidney failure; but just today, my doubts as to the source of the swelling finally vanished.  As the swelling slowly recedes, I can now feel what is beneath it:  bone pain like that of many bruises in the big and little foot bones, soft-tissue pain -- all localized inflammation, which also imparts a continual burning sensation as the siege against the Lyme continues.

Having been in a bewildered, exhausted fog the past month of treatment, really stunned at how Lyme manifests itself and just hoping to get through it, I'm now feeling more real pain but I'm also more alert.  That's a very long sentence but I've also got hives right now so I'm just trying to make my way through this.

The hives, the pain, anything weird -- I'm told it's all to be expected, so I'm OK with it.  Guess I had the Lyme for a while before I knew I had it . . . so these posts have been slowed down, also, for a while.  I had even shut down this blog for several weeks, being sick and generally all out of sorts.  Now, I must effectively begin again.  I can't promise anything regarding increased frequency of writing, but I can surely try to post more often.

Through all of this, there's been a chorus echoing through my head:  "MCS and Lyme!  Lyme and MCS!  Connect the dots!  Connect the dots!"

I do not doubt that there are many dots in this equation to be connected.  From firsthand experience alone, I can simply state:  Each thing makes the other worse.  And when Lyme symptoms and MCS symptoms occur simultaneously, it's nothing to joke about.   In that event, there's just more of everything:  more overall toxicity, more swelling, heightened neurological symptoms and increased hormonal shifts, adrenal depletion, slower detoxing, more delayed or completely prevented immune response . . . just a mess.   It's impossible for me to tease apart all the details.  I just know they're all "in the mix."

Lyme disease, alone, can do crazy things neurologically.  It can amplify the senses.  So can Post-Traumatic Stress Disorder (PTSD).  So can sensitization to chemicals.  So can a fever/virus/infection.  So can certain pharmaceutical drugs (which are synthetic and contain chemicals).  So can food allergies. 

Previously, I've usually been able to discern, in my own experience, what part of my (triggered) neurological distress was a chemical reaction (due to its characteristic pattern and reliability of response) and what part was due to other factors.  At present, however, the Lyme disease is a very big thing on my platter and I'm still getting acquainted with it -- although I also seemed to have had an active case of it 25 years ago which was never addressed.  From what I can tell, I've had very few chemical reactions lately.  Of course, I've barely been going anywhere due to the Lyme.  But the few times I've gone out, things haven't been really all that bad.  That's good news.

From here on in, I'm focusing on a new angle:  the concept of neuroplasticity as it relates to MCS.  This simply means the ability of the brain to change and adapt to new conditions -- both environmental and psychological.  Sometimes the brain changes for the worse.  But, sometimes, it also changes for the better.

Please see the new pieces featured on my sidebar and the new tab up top entitled, "'Limbic Sensitization' Hypothesis."

I hope to focus on the Limbic Sensitization hypothesis within the next few posts.  My intent is to combine this hypothesis with the concept of neuroplasticity and see where it leads.  I'm not making any conclusions in advance -- that would be impossible.  I am, however, intending to "explore" each concept as fully as this brain is able to.  This is my way of "following the hope" wherever it leads me.

When in doubt, I always "follow the hope."

Cheers!

~ Daisies