Saturday, May 16, 2015

March 7, 2014 Hope Abounds


Well, I have not done any health updates for a while - and for a good reason.  We are working hard on a new treatment.  I won't go into the details, but honestly, we've been concentrating so hard on it, we've not taken the time to think about our health issues!  Ironic, no?

But I did want to jump into your lives for a moment to let you know that we are seeing improvement!  And remember - we are seeing improvement on symptoms that doctors have addressed in 3 ways:
1. This is all in your head - here, take a few prozacs and don't call me in the morning
2. MCS doesn't exists (but why do I have a rash, swollen fingers, etc?) Let me repeat - it is not real.
3. MCS is real, you have it in a severe form, we can help symptoms but you will have this isolating disease forever, as will your children.  Good luck with that.

So you see what we are dealing with.  And hopefully you can imagine how excited we are at the following improvements that we've seen in the past 6 weeks:
1. Chris no longer has to shower and change clothes when he comes home from work (he was changing in the garage, running through the house and jumping into the shower before he was able to get within 5 feet of me six weeks ago)
2. We are able to drive most places with the recycle air button in the car OFF! (We've had to make sure it is always on or a fire, someone's perfume, laundry smells from houses, etc can ruin our day)
3. Eloise was able to stay in the vicinity of a campfire for several hours with no ill effects (before, this resulted in hours/days of coughing due to irritated lungs, along with multiple stomach issues)
4. We successfully went to three Targets in one day (we REALLY needed something ;)). When we came home we did not change our clothing or take showers.  Exciting on several counts here - we had no reactions to the stores (and I purposefully kept breathing as we walked by the candle isle), no migraines, no stomach issues...  and no extra laundry!
5. I only had to wash my new clothing once (though I did it twice to make sure) before I couldn't smell the store anymore (six weeks ago it took 12-20 washes with double rinses to make new clothing bearable)
6. Chris epoxied my pottery room floor and I was able to go in the room amid the fumes and help (six weeks ago this type of fume would result in migraines, confusion, loss of speech ability, etc)
7.  I went to the dentist, had my teeth cleaned, came home, just like a regular person with no ill effects, not even a tummy ache from the toothpaste!  Yeah!
8.  We had a few friends over on a couple of different occasions (who are low scent but not completely non-fragranced) for several hours.  We had lunch, visited, etc with no problems.  I could smell soap, etc, but it did not affect me!  The kids were not affected either (past visits of friends have resulted in days of symptoms, along with hours of airing out the house).  Victory!
9. We returned all of my oxygen tanks, deciding that they are no longer necessary.

We are starting to work on more deeply scented objects (which takes some time, since when I start something new, I usually end up with my throat and chest closing up), but we are forging forwards.  And we've been experiencing these wonderful results even in the midst of the flu (which hit us at the 4 week mark) and a new virus that is hitting us right now.

So now we are looking forward.  We'd love to be able to check out library books again.  And visit friends!  And our big goal - we would absolutely love to take the kids to Disney World!  That is somewhere that we thought we would never get to again - too many fragrances, chemicals, etc.  The kids are tremendously excited, and have dug into our new treatment with gusto so that we can go on a vacation (we haven't taken a family vacation in a long long long time).  All in all, we are very encouraged.  So now off to the store for cold medicine ;)
"May the God of hope fill you with all joy and peace in believing so that by the power of the Holy Spirit you may abound in hope." 
Romans 15:23

1 comment:

Note: Only a member of this blog may post a comment.