After neglecting our blog for quite awhile we decided to post an update as we seemed to have reached a turning point in our fortunes this summer. We’ll start with a brief update of the last few years for those we haven’t had much contact with then catch you up with our current situation.
After losing the house due to mold and Lisa’s environmental illness we felt we had landed on our feet by finding a care-taking position on a small tree farm during winter months and living in our travel trailer (an Airstream) the rest of the year. Pretty ideal for vagabonds like us! Lisa’s health and chemical sensitivities were slowly improving and it felt like we were on track to a full recovery when she started experiencing severe abdominal pain in the spring of 2012.
Another year of doctors visits and uncertain diagnoses finally led us to have her gall bladder removed in March of this year. A routine surgery that not only didn’t alleviate the pain but created even worse symptoms we are still dealing. Feeling desperate we drove out the Mayo Clinic in July to see what their doctors could tell us.
The remainder is from an email that we wrote as an update to family:
First of all we should say that we now understand why Mayo has the
reputation it does. It is truly a patient-centered, world class medical
facility. It makes us wonder why medicine is not practiced this way
everywhere. It’s not just that they have the brightest minds from all over
the world. Those folks are attracted to work here because of the system of
care that’s in place. As some of you know, we applied to the Arizona Mayo
clinic last summer but were rejected. At the time we thought this meant we’d
been rejected from the entire system of clinics and it wasn’t until the
failed gallbladder surgery that we found out otherwise.
Lisa’s overseeing doctor is in the GI department (from Ecuador no less!) and
he met with us to give us his thoughts on all the different testing and his
consultations with the many other physicians we saw. Now they are
establishing some medication and physical therapy/rehab protocols.
The short of it is that the Mayo clinic would never have removed the
gallbladder due to my testing results. They believe the abdominal pain has
been the interaction of three different things, none of which on their own
would be too bad, but together create the significant pain I experience
1. Abdominal Myalgia (a muscle that radiates pain laterally from spine
around to the front near her belly button at dermatone 10 where the pain is
and they think is linked to myofascial and deep muscle issues.
2. Heterozygous for Hemachromotosis (high iron levels in the blood that can
be really dangerous if it gets out of hand, causing abdominal pain, extreme
fatigue, heart disease, arthritis, and liver disease). Most heteros don’t
display symptoms but some of my iron tests are consistently in the
abnormally high range (although on the low end of that spectrum).
3. Pelvic floor dysfunction resulting from an abnormally-shaped transverse
colon that slows transit time causing radiating pain. My time in the
dysentery ward in Guatemala in 2001 may have exacerbated this also.
In addition as some of you know, I have had burning in the spine and
numbness/tingling in the left leg. We met with one of the premier
neurologists there (from Argentina and a Professor also) who ruled out any
neurological issues (such as MS, etc). Luckily, the MRIs of the spine were
clean and the spots on my brain MRIs are not remotely what one would see
with MS. Instead, they appear to be migraine-related (even though I only
experience silent migraines usually and had not received that as a firm
Another aspect of this has been the medical trauma triggered by the surgery.
The lead doctor for the GI unit we worked with (he was from India and
oversaw the GI doc), gently leaned forward and pushed against Lisa’s
shoulder to say Lisa had hit a tipping point. They were very respectful of
the mold illness diagnosis saying they know how dangerous it is and believed
the stress of losing the house, our belongings, the stress of an
environmental illness and the unresolved abdominal pain proved too much when
the surgery was thrown on top of it. Ironically, it seems like Lisa’s
environmental illness has been improving for which we’re very grateful.
Anyhow, the prognosis for recovery is good but there’s a lot of work to be
done between here and there. Medications are starting to help but are
needing to be adjusted to alleviate side effects. There are some physical
therapy requirements too which, as most of you know, is a slow process. They
would like Lisa to return to Mayo for 2 weeks of rehab, but we’re waiting to
start that due to expenses.
So that’s the update. We are recuperating in Stanley, our traditional
vacation spot, with nothing on the agenda but relaxing, swimming the dogs
and short hikes amongst the mountain splendor. I head back to work in a few
weeks and before then, we move into a new townhome in Hailey which is an
exciting step towards stability for us. Pray that Lisa can safely live and
heal in that space.
Thanks again for the ongoing support. We’re not through this yet but we are
coming away from Minnesota with some answers which is what we came here for!
Tod and Lisa
So that’s where we are now. I guess no one ever plan’s for these types of life-changing events. We are hopeful though that we can get back to a semblance of normal in the next year or two and start rebuilding and planning our futures from there.