Saturday, May 16, 2015

January 6, 2014 Frankly

My nine year old drew this for me as my Christmas present.  I think it is fabulous!  She is not doing that well - she hurts all the time, and two nights ago when I put her to bed, she looked up tearfully and said, "Mommy, I just cannot live without pain."  And she is right. She cannot. Sometimes I can distract her, but I cannot fix her.  Her stomach, her muscles, her joints, her feet, her head.  It never never leaves her.  She never gets a break.  I want a new body for her so badly it makes my stomach hurt.

But this is our life.  We do what we can - she has had every test known to man, it seems.  Her last visit to the pediatrician resulted in 6 vials of blood being taken.  They know something is wrong - but they just cannot find it.  Her allergist believes we should have her genes tested, and should consider a treatment called LDA (low antigen dosing).  He likes to start in the winter, so perhaps next year.  It is a very difficult treatment, and can go on for a lifetime.  Of course, none of this is covered by insurance.  He believes that her body is suffering from toxicity right now - that for some reason she cannot get rid of the mold toxins, and probably the toxins from the Lyme's organisms also.  So, we will continue our Lyme's treatment (we may see no improvement in that for 6 months), and we will start her on a drug called cholestyramine, which pulls out fat soluble toxins.  Unfortunately, it also pulls out fat soluble vitamins, so we have to be careful and rotate her on and off.  I've had to take it for over a year so far, and it did help me, so we are hopeful.  We just did not want to take this route with a child, but those at the end of the rope can't be choosy.

My twelve year old, on a happier note, is doing very well indeed.  Her thyroid is leveled out (though the doctor says we should expect a slow decline since this is an auto-immune disease).  But that is an easy fix of just upping her meds when she slides.  She has some sensitivities to chemicals, but it is low compared to the other gals of the family.  She also has a good nose, and can tell pretty immediately if there is a dangerous chemical in the air.  So she is blessed with the ability to remove herself from danger.  Now she just has to learn not to people please, something that seems to be genetically engineered into this family - but she will have to learn to be able to politely excuse herself when something harmful is around.  That will come in time.

As for me, I'm fine.  LOL.  As my doctor says, "Wow.  It must be hard to look so darn healthy and be so darn sick!"  I'm having very little pain (well, for me anyway. Except when fronts come through - when the weather changes, which it is doing every couple of days right now, there is nothing to do except crawl into bed. Or when I get an exposure....  ok, yes, I have a lot of pain.  I just don't focus on it).  I had some genetic testing done, and the verdict is back - I should be returned to sender.  Enough said.  My MCS is flourishing - the newest thing is that plastic grocery bags from Krogers sets off a reaction now.  Ah well.  Funny thing - my mom kept telling me of a friend who had a friend who had MCS and some doctor in Durham cured her.  Well, she called today and guess what - it is my allergist!  I asked him about it - he said there are different variations of MCS.  Anyway, he wants me to do the LDA protocol also.  I'm also supposed to get an oxygen tank - the only thing that has been shown to help when a severe MCS case gets an exposure.  Actually, he tells me to get one every time I go (for over a year now).  Arg.  It's just sooo expensive, so I keep putting it off.  He was pretty serious about it today though, so I guess we may have to invest.  He said I'll end up in the emergency ward soon - and then I'll start reacting to everything there.  Better to give myself oxygen at home.  Apparently my reaction is very similar to poisoning, and cells begin to die - so oxygen can help them survive.

My doctor was quite direct with me today.  He said that we will never get better (our form of MCS seems to be the type that sticks around).  Ouch.  He had hoped it was less serious originally, but now he's pretty convinced that we (Eloise and I) fit into the subset that will not experience recovery.  Our job is to lower the toxicity in our bodies enough to be able to have some sort of interaction with a small part of society.  He cautioned that this will be imperative - and said, "Quite frankly, very few people die from serious MCS.  They commit suicide first."  Yikes.

That just breaks my heart.  There are thousands of people right now, huddled in tents, on porches, in cars.  We are in contact with some who are struggling to stay alive in the freezing winter weather.  They are all alone, freezing to death.  Or if they are not freezing, they are wondering what will happen when the power goes out and there is nowhere safe to go.  Those in houses are wondering if they will get worse - if next week or next year, they will be the ones living in a car.  But wherever they are, almost all of them share one thing in common.  They are alone.  Is it any wonder that this lost group of society chooses to end their existence?  Spouses, friends, relatives, everyone leaves in so many cases.  I feel so blessed that I have my family.  That I have a house.  Yes, I sometimes wonder if someday I will have to leave also, but for now, we are here.  But what would I do if....?  Yes, these things flit through my mind. I do not dwell on them or plan for the future.  That is indeed the way to despair, and I will not go there.  Thank God He found me before MCS.  I wrote a verse on my window, and posted it on facebook a while back.  A friend commented "How bleak!"  I disagree.  For our life, this verse is everything.

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