This blog post was mostly prepared many months ago when we first discovered the mold problems in our home. I simply never found the time to complete it and do the actual changes to the blog.
When Rob and I discussed whether to share our current
predicament on Rebecca’s blog, I mentioned that if I did so I would need to
change the blog name as it would no longer be just about Rebecca. I mused about what to rename the blog and Rob
didn’t miss a beat, declaring we should call it “One Percent”. I looked at him rather puzzled, but then it
dawned on me what he was getting at. We
always fall in the odd category, the category that doesn’t follow the medical
norm … the one percent category. So
there you have it, we have renamed the blog One Percent Family.
Sometimes it’s a good thing to be in the one percent
category, and then there are the times when you just get fed up with being in
that one percent category. Rob should
have known to run the other way when we first met. At that time I was struggling with gut issues,
which years later we would realize was likely Fructose Malabsorption (FM). In 2008 Rebecca was the first in our family
to be diagnosed with FM, and slowly all but Rob followed in that
diagnosis. At that time it was something
we stumbled across as our pediatrician decided to test Rebecca for this “new”
thing that they were learning about. In
2008 FM had only just been discovered some 5 years before hand and so it was
not well known and the literature was still up and coming. Over the past 10 years researchers have
learned a lot more about what is tolerated and what is not and we as family
have learned how each one of us is individual in this diagnosis, with each one
of us handling different amounts of fructose or fructans. Technically I can’t really put FM in the one
percent category as they actually believe that a third of the population
suffers from this due to the worlds current eating habits and the food
industries love of putting sugar in everything.
FM is much like lactose intolerance - it is an intolerance, not an
allergy, and everyone’s tolerance level is different.
Shortly after we were married I finally decided to try
find better answers to the headaches I had been suffering from since I was
about 12 years old. In those days (man I
sound old) the internet in the home was just a new thing, and while information
was becoming available on there it was not as abundant as it is now, but with a
good chiropractor we were able to realize that my jaw was my biggest
problem. This began some 5 years of
intense ortho work to try and fix my TMJ (temporal mandibular joint) disorder …
now referred to as TMD in the medical world.
I had this work done in an office that dealt specifically with TMD and
was somewhat of a teaching office, so I was often the patient that they loved
to show their “students” and the dentist always referred to me as his “worst
patient” … this was not in reference to my behaviour ;) but apparently the
state of my jaw and the frustration they were having in trying to find the
ideal solution for my jaw. In the end
they ended up leaving me with two splints – a night splint and a day
splint. I have worn these 24/7 for the
past 15 years and as my current splint falls apart I dread the process of
trying to find someone who will tackle my case again to provide new jaw
support.
Our third child, Justin, was born premature after I
suffered from a severe case of HELLP Syndrome that sent doctors from two
hospitals scrambling. The Lord spared my
life at that time, but He had other plans for Justin who went home to be with our
Father after three short weeks on this earth.
When pregnant with our fourth child I really wanted to have a natural
birth but in conversation with the obstetrician she advised that there was a
less than 1% chance of having HELLP Syndrome to the extent I did and while the
risks of problems from VBAC were low, she was afraid to try it for me because
of my pregnancy history ... she understood that things don’t go normal for me
and it wasn’t worth the risk.
Our fourth child, James, was considered healthy when
born, but we soon learned that was far from the case. After a difficult first year he was diagnosed
at 18 months with Lysinuric Protein Intolerance (LPI), a rare genetic disorder
with only 100 cases in the world at that time, of those cases over 50% were of
Finnish descent, but we do not have Finnish ancestry, which the doctors always
found interesting. Further unexplained
issues ailed James and it was another year before they diagnosed him with Pulmonary Alveolar Proteinosis
(PAP) secondary to LPI, which only had approximately 25 cases worldwide. Our little boy definitely fell in the less
than 1% category. The doctors tried hard
to learn, understand and treat James illness, but it was not the Lord’s will
for him to stay here with us. At 35
months old James went to join his brother Justin to be with our Heavenly
Father.
After Marietta had her
skiing accident we turned down the option to go to the hospital and figured it
would all be okay with a few days rest … 90% of the cases are better in 92
days. It is 22 months later and she is
still not better … this time we fall into the 10% category.
There’s enough
information on the blog about Mold Illness so I’ll just leave my percentages on
that … but suffice to say that while about a quarter of the population is genetically
susceptible to Mold Illness, of those people many do not end up being exposed
severely enough to become sick, or their symptoms never become severe enough
for them to realize that mold is causing their struggles.
With regards to Lyme
Disease … the rate of Lyme Disease continues to increase, so we are likely not
in the 1% for this, but it’s such a difficult disease that it pretty much feels
that way.
Over the past years we
have been very thankful for our family doctor and pediatrician who have
understood that our kids simply do not follow the “textbook norm” and that you
need to think outside the box when dealing with them. It seems that things that heal easy for other
people always seem to escalate into bigger things for us. It’s a discouraging feeling often as I want to
ignore the things that other families so easily get away with, but it usually
backfires. I struggle with trying hard
not to “make my kids sick” by making a big deal out of things and not
neglecting them because their little things seem to turn into a big deal. But through all these ups and downs we come
through each time knowing that the Lord has made us each and that we are all “wonderfully
made”. This is not to say that there are
not rough times along the way, but when discouraged or down trodden we only
have to look heavenward to find renewed strength and be reminded of the many
blessing that surround us each day again.
“I praise you, for I am
fearfully and wonderfully made.
Wonderful are your works; my soul knows it very well” Psalm 139:14