Update 21 11 2010

Well, I didn't get a whole lot done this week.  Last weekend, I was able to get the sheetrock up in Emily's room and one wall fairly smooth.  Hoping get the rest of the finish work done this weekend so we can paint next week. Got the paint ready, just need to get too it.  Then we need to furnish Emily's room and get her moved back in!

Leila has had a rough few weeks.  She tried a new medicine and had a bad reaction.  She got some relief but had insomnia last week.  She had a better night's rest last night. She has had an exhausting week.  She was able to work some at school which helps here as she gets to be around people. 


I have a number of tests done including a CAT scan of my lungs and a couple of diagnostic tests for asthma.  So far, no evidence of asthma in the usual means but some of the tests last week were strange.  After being given the drug that stimulates an asthma attack, airflow was fine but my peak flow was down about 48%.  Not sure what that means yet.  I continue to have fewer headaches than I have in the last few years.  Looks like the stuff behind our wall in the bathroom was irritating my sinuses leading to headaches.  Which is good.  About two years ago, I was diagnosed with migraine syndrome updating the diagnosis of vasomotor rhinitis given me around 1990.  Turns out, all the years that I struggled with headaches, they really were migraines. 

Emily seems to be having more good days and she is at least, able to get to school and function.  She still has her bad days and very bad days but I think there may be some improvement.  Of course, her good days would be a very, very bad day for someone not affected by mold. 

I keep meaning to discuss our trip to Arizona and the results.  Hopefully, I'll get a chance during winter break. We are doing everything we can to follow the doctor's instructions but so far, at least for Leila and I, there hasn't been too much improvement.  We haven't yet been able to fully get the kids onboard the treatment plan but should be able to here soon. 

Update 11 29 2010

Good evening!  It is finally getting cold here again (-20) and I still have plenty to do outside and under the trailer.  Classic Alaskan project timeline of course! I finally got the sheetrock up in Emily's room.  Now to do the finish work. 

We are hanging in there.  My lungs aren't improving much but I have an appointment tomorrow for some tests.  Still have lots to do around the house so I am hoping that my lungs decide to heal. If that's the problem.  Leila isn't showing any real improvement yet and is having nausea in the mornings.  The kids are doing okay.  The great news is that Emily had a couple of really good days!  For a few days last week, the real, bright and shining Emily came out and it was fun for everyone! 

I may have mentioned earlier that people with chronic fatigue/fibromyalgia are subject to having flare-ups and increased symptoms when under stress.  Given the stress we are under, it is a miracle that Leila is able to function at all!  Financial stress is great right now.  Also, the loss of friends over the years due to health issues and the lack of meaningful relationships weighs heavily on Leila.  The losses our kids have experienced, especially Emily and Kevin, are also great. 

In terms of financial stress, we have no idea how we are going to make it through the winter and keep our house except that God promises to be with us.  A few sources of expected money (promised paperwork for reimbursements, etc.) have not materialized or the door has been closed.  Our credit card debt which was already high due to special needs, has doubled and is an unbelievable burden.  Dave Ramsey and others preach elimination of debt and restricted use of credit cards.  Clearly, the Bible teaches use of credit is a bondage and that is exactly what we feel right now but what does one do?  If you don't buy the special foods, someone goes without or eats a toxin.  If we don't buy fuel. our house freezes.  This situation appears to be very common for families with serious health issues, a group to which we have belonged for a long time.  With gas over $3.50 a gallon and heating oil following suit, we are needing to really stretch our dollars!

Leila and I are working to give all this to God and let Him take over.  Unlike promises made by humans that are subject to change, God's promises are always kept!  More importantly, Leila and Emily are particularly susceptible to stress so we need to let things go to help them avoid the negative affects of stress.  I suspect that the stress I've experienced over the years (much related to health stuff) has probably stripped 10 or more years off my life.  I'm sure that we will make it just fine but things will need to be very tight. In light of how specific situations have worked out, we believe that God is truly wanting us to depend fully on Him and that He will provide.  We look forward to what He is going to do. The Bible says our God is a big God.  Well, we get to see Him at work for us this year.

Thanksgiving

For those who aren't in Fairbanks, we have enjoyed a WHOLE week off from school due to an ice storm.  Warm weather plus moisture has created a lot of rain, icy roads, and closed schools.  All of us are enjoying the week off! 

We have a lot to be thankful for!  As I've posted, our biggest relief was for tests to show our air was within normal boundaries. I can't say that we are noticing any real improvements yet but that will take time.  However, we are noticing that a few direct symptoms have been reduced.  For example, since I cleared the mildewed closet shelf out of our bedroom, my headaches have been minor.  I normally get a few headaches with weather changes but I haven't been getting any headaches other than that!  The indirect symptoms of mold toxicity will take time but at least we are on the path to healing. 

We are thankful for Andrea Fabry's website that has been so helpful for Leila.  Leila was just this morning watching a video on healthy cooking related to mold recovery.  There is so much there.

We are thankful for all the people who assisted us in various ways this summer. Thanks to those who helped with our house and in other ways!  Your support has been appreciated.

We are thankful for Arny's job at the University. The position has the flexibility for Arny to be availability to help Leila when she isn't feeling good and when Arny isn't doing well.

We are thankful for our family!  This week has been fun so far and it is a reminder of the blessing of a family.

We are thankful to God for providing for our needs and getting us through this year.  There are many challenges facing us next year and we look forward to how God will deliver us.

Mr. Smiley, the melting snowman.  He was quite cheery but now he is less pleased with the warm weather and rain.  A vacation in Antarctica may be just the thing he needs!

Flooring almost down and few headaches!

Well, I got sheetrock up on about 1/2 of Emily's room this weekend and with cousin Paul's help, most of the flooring down in the hall and living room.  Have about 1/3 of the floor left in the living room.  Thank you Paul!

It feels awesome to be able to breathe and get some chores done!  The doctor put me on a steroid to calm the inflammation and that seems to finally be helping.  Even better, since I removed the moldy stuff out of our bedroom 2 weeks ago, my headaches have been fewer and much less intense!

Erika scored a personnel best in rifle, a score of 450, this weekend.  She has been struggling with weakness this semester so this is exciting. 

Leila has been struggling the last few weeks.  Morning naseau, weakness, etc.  Each day continues to be a struggle but God's grace helps her through.

Emily has up and down days.  Part of chronic fatigue/fibromyalgia is an inability to handle stress and Leila and Emily struggle with that daily.  Emily and Jordan found the heiroglyphics of R2D2 and C3PO in the Raiders of the Lost Ark movie.

The kids love the new floor because it is slick and therefore fun.  Guess I'd better put the emergency room on speed dial...

Things I'm working on around the house

Top priority: I am working on Emily's room right now.  I've gotten all the prep work done on the walls.  I had some weatherization to do, moved a switch box, cleaned up the edges, etc.  Should be able to put the sheetrock up quickly and get the job finished.  I'm hoping to have Emily back in her room by her birthday.

Top priority: We have the laminate flooring for the living room, hall, and master bedroom.  The floor is mostly ready to install the flooring in the living room.

In the master bedroom, I am redoing the closet by removing cabinets (last week), the water heater, etc.  That will give us the whole floor when we get to putting laminate down. 

Haven't even started finish work yet.  I have some cool ideas for the living room and kitchen just need time to get it done. 

I also need to level the house, take out the water heater, do some insulating underneath the house, clean up the garage, replace some siding outside the house, Going to be working all winter!

Not to mention that our cars keep dying...

Bringing new stuff in this weekend

Leila and the kids went to Sunday School today for the first time in months.  Being alone and a lack of socialization are major issues with the kinds of health issues we are struggling with.  Leila says she is feeling weaker and weaker here at home.  Not sure what the problem is but I am working to remove all sources of contaminants.  After removing some contaminated wood last weekend, my headaches have dropped off.  I did however have to get a new prescription for what appears to be inflammation in my lungs.  I've been struggling with breathing difficulties and it got worse.  May be inflammation from small particles or something.

We started to bring in our new linens and clothes this weekend.  We have to replace all of our clothes and linens to make sure that we aren't continuing to be exposed to mold.  We've also replaced a desktop computer, microwave, and TV.  It's like God wanted the appliances removed as the computer died and the microwave had an accident.  (Did you know that you can burn something in a microwave and it may not come out?)  The appliances collect dust and mold inside so they represent continuing sources of exposures.  So, out they went.

I found a bit more mold this weekend

I was working in the master bedroom this weekend and discovered more mold in the wall between our bedroom and the bathroom.  Looks like it developed from the water leaks this summer.  One of the leaks this summer occurred when a pipe nipple was put into for the shower but it was too short.  It leaked for quite awhile until we discovered it.  It looks like this leak caused mold to grow in a small area.

I sealed it in until I can get a chance to spray the mold killer which we are all highly allergic to which means that we have to be somewhere else for a few nights.  Our bedroom was tested and was found to be free of toxic mold so I'm not sure it was the bad stuff. 

The good news is that I didn't have a headache this morning!

Cleaning up the house

After getting the house whipped into shape, sort of, we moved back into the house Friday evening.

We spent the weekend at various tasks cleaning up and getting settled back in.  We still have lots to do.  I need to remove a cabinet in the master bedroom that got water damaged by the flooding this summer and so some clean up there.  I need to fix Emily's room up and then come back to finish in the living room.

We bought hardwood flooring for the living room, hallway, and master bedroom.  We will eventually update all the floors.  In the meantime, the steering in our van has failed so we are down to two cars.  We have to replace the computer, TV, and a few other things as well. So, lots to do yet but at least we are in our own home now. 

Below are some pictures from the kids helping with painting.  They apparently had a great time!

Kids having fun.

More fun Painting. 

The semi-finished living room.

Moving back in today

Well, we finished the drywall and got painting done on the house last weekend.  Smells have dissipated so we are now able to move back in the house.  Looking forward to being in our own beds.

We are grateful to the McCreadys for allowing us to stay at their house for as long as we have.   Thank you!

Still have lots of work around the house including drywall and painting in Emily's room.  So I'll be busy all this winter.  But at least we know that we have conquered the mold issue.

Mold tests came back great!

Finally!  Our mold tests came back clear of toxic mold!

Kevin and I spent the day at the house working in weatherization in the kitchen and living room.  We got the vapor barrier up and will start sheetrocking tomorrow.

Mold remediation round 3

The last two week were busy!  Since our house was not toxic-mold free, Curtis Wright came back up to treat our home.  (There’s a guy who really DOES stand behind his work!)  To make sure that we uncovered all the mold we could this time, we cleaned out our garage to get access to the walls and planned to remove sheetrock in Emily’s room and in the living room and kitchen.  We planned to combine mold remediation with weatherization of cold areas.  

Kevin enjoying the day.

The prior weekend, we set up a portable shelter and moved all of our “treasures” from the garage and house outside into the “shed”.  It was a long weekend but we got most of it done.  Thanks Julie for the help!  We spent the rest of the week trying to get things ready to move out.  The McCreadys offered as some rooms for a week or so at their house for which we are very grateful.  Did we get it all done?  Well, let’s just say that Friday was a hectic day.

Bees nest in wall.

I moved the shelves, toolboxes, and all the goods left in the garage into the middle so we could get to the walls where some water damage had occurred.  The garage went from overflowing to nearly empty. Then, Kevin and I assumed the role of “Safety Ninja” and removed the sheetrock from Emily’s room.  It took us a few hours of hard work and clean up.  Well, Kevin said What work?  Some friends, the Reitano’s helped me remove the sheetrock in the living room and Kitchen in the evening (we were here until about 11:30).  Things went pretty good except that the sheetrock in the kitchen was glued AND stapled. Talk about overkill.  Check out the cool hornet nests we found in our wall.

Bathroom Mold

Anyway, after a long day Friday, I had sheetrock stripped from all but the garage.  Saturday morning, I got to the garage and stripped the lower 1 foot from the walls where there was water damage.  We found some mold there.  I also removed some sheetrock from behind the toilet in the kid’s bathroom and found some really great examples of mold.  Without tests, it is difficult to confirm but the photos look to be Stachybotrys.  I took the detailed ones on our fancy digital microscope at work.  Pretty cool!

Bathroom mold forest.

We are waiting to hear back on the mold tests but Leila and I feel very good about what has been done.  We found and removed a bit of mold and we think we may just have a clean house! Well, give or take a few drop clothes, couches, and dust piles.  Hoping to get the weatherization completed and walls up and taped this weekend.

I'm supposed to be working on the house but instead, I think I'll have some ice cream.

Reducing our weatherization effort due to stress

Well, we decided to reduce the amount of work we are going to do this coming week.  It was giving Leila too much stress and causing her to be very ill.  That is a side effect of chronic fatigue.  I don't yet understand how this happens but stress causes dramatic changes in Leila and Emily causing them to essentially be bedridden for a few hours to a day or more. There seems to be a physiological cascade that triggers intense fatigue, strong depression, nausea, and other symptoms.  We try to keep stress down in our home for Leila and Emily. 

So, we are going to just work on the living room and kitchen as both need weatherization, Emily's bedroom, and the garage.  That leaves Kevin's bedroom and the master bedroom for later.  We have a standing offer for the use of a few spare bedrooms at a friends house and we may take them up for a few nights.  Kevin and I can do all the work on this project and probably have most of the work done over the weekend in the house.  Putting Emily's room and the garage back together will take longer.  Maybe we can finally get this mold thing licked!

Checking out temporary housing options

We need to do some renovating/weatherization/mold remediation over the next few weeks and are thinking about a place to stay temporarily.  Went to see a house offered by some friends just down the road from our house.  Checked it out and Leila and I both got nauseous and I got a headache from the place.  When you have environmental and chemical sensitivities, a brief exposure, sometimes just a wiff, is all it takes to become completely ill.  The problem can come through multiple biological pathways but in general, your body becomes so defensive that any little irritant can trigger a full blown attack.

I think that  we almost have this mold issue beaten in our house.  Mold concentrations are now down very low but for someone as sensitive as we are, there can be zero toxic mold.  I believe that the remaining mold is in the garage and around windows, etc.  We also need to weatherize one of our outside walls.  So, I plan on removing the sheetrock and going at it.  Not too big a project but big for us given that we can't afford to have any excess dust created and have to avoid creating too big a disturbance.

You can pray for us!  We need a good crew of people to help us remodel and we need a temporary place to stay that would work with our difficult special needs.  Or that the really nice weather would continue so we could stay in our trailer.

The effects of mold in our house

Toxic mold is very dangerous in your home.  There are a number of sites discussing the damage mold can do to your body.  These range from simple headaches to death.  It is impossible to list all of the problems that mold toxins can cause if you are susceptible.  Health issues include digestive problems, fibromyalgia/chronic fatigue, mental confusion, breathing difficulties, diabetes, eye problems, weakness, nerve damage, and the list goes on!

For Leila and I, exposure has occurred over many years from childhood to the present.  Both of us have been determined to be genetically mold sensitive. In summary, symptoms for Leila start with chronic fatigue/fibromyalgia and go on to include mental confusion, loss of hearing and degradation of sight, body weakness, nerve damage (loss of feeling).  Leila is functioning better now but was incapacitated a few years ago.  For years, I (Arny) have suffered migraine-like headaches and severe stomach pains.  I've also experienced loss of mental clarity and my environmental and chemical sensitivities have increased.

Emily was incapacitated 2 years ago and had to drop out of North Pole High School.  She has been diagnosed with chronic fatigue/fibromyalgia, adrenal fatigue, depression caused be mold exposure, and struggles to find energy for daily activities.  However, Emily just recently played her first ever varsity tennis game and SHE WON! Yahoo!!! 

Kevin has diabetes, major intestinal issues, and severe stomach pain.  He also suffers from fatigue.  When Kevin avoids places with fragrances and dust, his stomach pains get better.  This year, he is homeschooling.

Erika and Karilyn are following the same path as Emily and we are trying to prevent them from getting worse.

Leila and Emily have gained some from Drs. Amy Williamson, Scott Luper, and Anne Lilley and Shilo from the Alaska Center for Natural Medicine.  Dr. Luper and Dr. Amy literally pulled Leila back from the edge of death.

Removing toxic mold from our home is the critical step in the right direction.  We are following that up with treatments under the guidance of Dr. Gray in Benson, AZ.  

Right now, stress is a BIG issue for Leila's health.  She has woken up very sick for the last four mornings and "crashed" (became temporarily physically incapacitated) Wednesday morning due to the stress.  The stress arises from trying to make our house habitable (not quite there) and manage the financial strain (you don't really want to know), emotional damage (depression and other scars), and spiritual distress arising from trying to handle our lives right now.

Considering the water damage done this summer (causing excess mold growth) and continuing aggravation of our "allergies" by lingering construction dust, we have been discussing selling our home to an investor but that would be at very large loss to us and would leave us with no resources to rent or buy another home.   So, we stay. If you want to see a REALLY BAD situation, check out this link: http://seattletimes.nwsource.com/html/localnews/2012845701_riverwalk09m.html

Fortunately, our mold situation is not as bad as that of the seattle times article (but it was underneath the trailer).

Welcome to Our Journey

Greetings to all who read this.  We have had many questions about from friends and family about our health and situation.  I hope that this blog may make it easy for those interested in keeping up with our challenging living situation.  Below is a brief summary about our summer.  I will expand on sections later but this gives a brief introduction into what our summer was like.  Pictures referred to in the blog will be moved over later but for now, are on my facebook account. This first post is long but sketches the challenges we've faced.

As a family, we have been sick for many years and getting worse. Leila and Emily were essentially incapacitated and the rest of us were experiencing declining health. Leila did an awesome job of researching our symptoms and matched them with mold toxicity. We had our house tested for mold in October 2009 and found slightly increased levels of dangerous molds. Unfortunately, the tests weren’t done right (controls failed) so we don’t know what the real levels were. However, we had a friend directed us to Curtis Wright of Envirotech LLC, Anchorage who remediates mold in houses. He reviewed the tests and identified our crawlspace as the major source of mold. We made arrangements to go to Benson AZ to see Dr. Michael Gray who specializes in mold exposure and environmental and chemical sensitivities. Members of our church volunteered to remodel our bathroom (it had mold) while we were gone and Curtis Wright was going to come up after we got the bathroom fixed to remediate the mold.

We flew to Phoenix June 16 and arrived in Fairbanks at 2 am July 7. We had a busy time visiting numerous doctors including an endocrinologist for Kevin’s diabetes, oral surgeon to remove Erika’s wisdom teeth, Arny went to Mayo clinic for chronic pain and many more. We saw Dr. Gray in Benson as well. (see my Arizona photo album.) We did have some fun. Leila’s sister and family paid for tickets on the train from Williams to the Grand Canyon the first weekend we were there and that was a blast. The kids enjoyed the pool at the apartment we stayed at (got lots of burns) and we were able to see 4th of July fireworks from the lawn of Wriggly Mansion! Clear blue skies the whole time! Arizona Mills, a mall in Phoenix area, was really cool. We completed approximately 28 doctor visits amongst all of us.

We arrived back in town to a difficult situation. A pipe was leaking in the bathroom after remodeling. Instead of flooding the house (whew!), the water went into the crawlspace resulting in a more serious mold growth problem (see the mold remediation photo album.) It turned out we had 3 different leaking pipes including a leaking drain we found after remediation. Yikes! Having environmental sensitivities and asthma in our family, the construction dust in the house was a disabling problem. So, our house was temporarily unlivable and we slept out in our popup trailer until Curtis Wright came up. It took >3 weeks but we were able to sand and finish the bathroom walls, paint, and clean up the bathroom and house before Curtis came up Aug 2-7. He took all the insulation out from underneath the trailer and re-insulated. He sprayed an antimold compounds under the trailer and throughout our house. Mold tests indicated that mold levels in the master bedroom were up to 26K spores per cubic meter (SERIOUSLY BAD LEVELS!) and Emily’s bedroom was up to 8k spores per cubic meter. Both rooms were identified as having stachybotrys, the toxic black mold. Post-remediation tests indicated that the mold was not gone so Curtis Wright came back up to Fairbanks Aug 21. Although mold levels were closer to background, we found stachybotrys mold in Emily’s bedroom walls and re-treated the house. Post treatment tests AGAIN showed unacceptable levels of Stachybotrys in one room so Curtis Wright is coming up again Sept 25. This time, we are going to rip out all the sheetrock in Emily’s room, strip the lower level sheetrock in the garage, and sheetrock along the southern outerwall of the home. Wow! Curtis Wright really stands behind his work. This has truly reached the point of being a crisis for us.

On top of the mold problem, Emily and I developed viral pneumonia late August! At least we think it was viral. It is never good when the doctors get excited about your case because it is so strange. They thought it might be “valley fever”, a fungal infection common in the desert but that was negative. Emily had double pneumonia and I had it in one lung, just before I had to go to Valdez for work and just before school started for Emily. Many of us were sick from the virus but only Emily and I developed full pneumonia. We are doing better but it is tough. There have been some tough weeks following where we’ve had to accomplish certain tasks even though we can hardly breathe and have no energy. Emily is hoping to play some tennis this fall and I am wishing I had the energy needed to complete the work ahead!

We are grateful for those who helped us by providing air miles to get to Phoenix, financial assistance to help with bills, and the help we received remodeling the bathroom. Thanks to everyone! Thanks to Curtis Wright for helping us!