Friday, January 25, 2013

A Hummingbird Story (part II)

I've had hummingbirds around me ever since. It has been a source of comfort for me seeing these fragile yet strong beings.

For the past 6 weeks or so I noticed the absence of hummingbirds. I couldn't figure out what happened. I always look for them and usually hear and see them so this absence was puzzling. I missed their presence.

They are amazing creatures with rich symbolism.

Anyway, I became increasingly concerned that I wasn't seeing one. I have some major decisions to make and was looking for a sign.

I was standing in my kitchen one day and heard a hummingbird.

She was sitting on a branch of a tree just outside the window. She was hidden so I had to look for her. I grew concerned because not only was it a poisonous tree but there was a bunch of mold all over the ground along with standing water that had been there for weeks.  She would appear at that spot for a few days.

What I didn't know was she was pregnant and searching for a place to build her nest! Last weekend I took the trash out. I paused near a tree and felt and heard the whir of a hummingbird flying past me. Something about her behavior clued me in that there might be a nest near. 

And there was! Here she is feeding her babies and then sitting on the nest to warm them.

 Every day I would go outside just once to see make sure she and her babies were okay. Each time I would go look she'd sit silently nearby on a branch watching. I felt like I was being let in on this wonderful miracle of nature.  I would pray all throughout the day that they would make it.

Today I went outside to check on the nest and found it turned sideways. There were no birds. I was heartbroken. I didn't know if the wind did it or maybe they hatched and flew away.  I kept going back searching for some clue that they survived but found none.

I don't know what happened to the baby hummingbirds but I choose to believe they survived.

This afternoon I went outside and heard a hummingbird so I looked up and there was a little hummingbird flying sort of sideways. He/she was either sick or it was a new hummingbird still unsure of his/her wings.

A Hummingbird Story (part I)

I have a special relationship with hummingbirds starting two weeks after my mom died. I thought I wrote about it somewhere on my blog but I couldn't find it.

Briefly, my mom had a short bout with a very aggressive cancer that killed her 44 days after she was diagnosed. Those 44 days were precious and terrifying, tragic and deeply spiritual. Things got very simple. It was all about living in the present moment.

During those 44 days I would sit with my mom every night as she fell asleep. I would watch her reading her book. The cancer had metastasized to her liver by the time she was diagnosed. She felt extremely fatigued and weak as a result but she loved reading her book. She would try to stay awake as long as she could. I watched as she'd start to doze off, the book falling. I'd gently pick the book back up, put it near her hands in case she woke up again and then would sit for an hour while she slept. During that hour I prayed for a miracle.

During that time I would often find myself wanting to ask my mom if maybe she could send a sign letting me/us know she was okay (after she died). Because she loved hummingbirds that is the image that would appear in my mind. But I never gave voice to those words because I knew my mom was fading fast and I didn't want to use up any of her time talking about my wish to know she made it safely to Whereever.

There is a backstory. Two Christmas's before she died I decided to make everyone in my family a stained glass thingie. Because my mom loved hummingbirds I decided to make a hummingbird for her. They took longer to make than I'd anticipated. It was close to Christmas and I was working on my mom's. It was the last one I had to do. When I was trying to fit glass in the chest area of the hummingbird the glass broke. I didn't have any other color to use except for red glass so I put the piece of red glass near the throat and chest area of the hummingbird. I'd never seen a hummingbird with a red chest area so I hoped my mom would like it and she did.

Two weeks after my mom died I was sitting outside on the front porch talking to a friend on the phone when a hummingbird appeared in front of me. My friends voice faded into the background as I watched transfixed by this beautiful hummingbird hovering about 18 inches away as if she were trying to communicate something. She had a red patch on her chest.  I knew she was from my mom and burst into tears.

Wednesday, January 9, 2013

My Toxic History

I've temporarily changed the title of this blog. A few weeks ago (maybe longer) I was talking about how badly I need to move out of this toxic apartment but that I didn't have help and that I was restricted because I couldn't drive far. I was in contact with quite a few people (with this illness) who would inevitably ask "How far can you drive?" and my reply is/was "Three miles at a time".

These past two months have been, and continue to be, intensely reflective. I have pulled away from almost everyone while I decide what my next steps will be.

I've been in denial about how much mold, pesticides, and certain mysterious chemicals affect me. Seeing how much my functioning has decreased since being since being back in a moldy environment has been an eye opener.

I've gone from being able to do 10 loads of laundry, cook, go to the store, walk Chelsea, and socialize to being in bed 80% of the time. When I first moved here I would take Chelsea for a walk 5 times a day plus other activities. Now my legs are so weak I'm unable to walk around the block without stopping (especially my left left leg and especially below both knees) It has nothing to do with deconditioning. I'm so fatigued after I get up, take meds, and make breakfast that I have to lie down again. I cook one meal and make it last the next 4 days (quinoa).

Since moving to this apartment I have had a toxic chemical exposure (Chevron fire), had my car partially flooded by some underground creek (it smells like mold and has condensation like crazy), and am living in toxic soup. All in seven months.

I found out the previous tenant complained about mold and told the landlord. This was told to me by the property manager who was recently fired.

I remember when I looked at these apartments. It was a beautiful sunny day and people were milling about. My sister and I first looked at the studio that was advertised. As soon as I walked in and took a couple steps I had a strong visceral feeling to GET OUT. I glanced around the apartment noticing how messy it was as well as the smell of gas. The property manager was grumpily telling someone that the previous tenant had a family emergency and left unexpectedly.

As I heard him talking I looked in the bathroom noting the previous tenant's toothbrush. It was if he left thinking he was going to come back. The family emergency story didn't fit with what I was observing but that faded into the background once I saw the 1 bedroom apartment. It wasn't fantastically cute or anything but it was cute and in a great location central to everything I need.  And they would take a dog. Awesome. I moved in three weeks later.

I noticed that I felt okay in the apartment except when I looked at the kitchen. It felt dirty to me. So did the back porch area. I also noticed a strange musty odor. It didn't smell like mold or mildew just....odd and......... funky.

Interestingly enough I forgot to look under the sink. Big mistake. The dry rot was so bad it looked as if the bottom of the cupboard had melted (it had a thick coat of paint on it). The back area that I didn't like? It's covered in mold from the rain and dampness. The back porch, the steps covered with a coat of pretty green mold. During the spring and summer it was dry and clean.

What I didn't know was the previous tenant in that studio didn't have a family emergency. He had been on dialysis and died of kidney failure.

And that flood? It was the creek as well as sewage. It entered the garages of the apartment building leaving the floors covered in thick stinky slime. The whole area smelled faintly of sewage. It entered the area via a large crawl space underneath my bedroom. The sidewalks outside the front of my apartment are still stained.

But that's just the past seven months. I have worked in so many water damaged buildings. I didn't know it was bad for me. I think of one place where I worked where we had buckets in various places to catch the water. I remember trying to get the agency I worked for to pay for a new roof for one of the residential programs I ran. They didn't have the money and declined. A year later one of the residents had an asthma attack in the middle of the night and died.

In 2006 my then partner and I moved into an apartment in the bay area. It smelled moldy to me and I commented that something didn't feel right (I had no idea about mold back then). She really liked it and other than the odor and my gut feeling there wasn't any other reason to not take it so we moved in.

I was diagnosed on 11/2/2007 with ME/CFS. Later that year I found out I was living in an apartment that had toxic mold hidden in the walls. The only sign of any problem was condensation on one of the windows and mold around the calking of that window. Here is the mold report (in case the link doesn't work it's November of 2008). By December I was housebound.

In the 80's the bay area had a problem with medflies. So they sprayed the area with malathion and some other substance all the while reassuring everyone that it was safe. They did mention that people should stay inside on the nights they sprayed. The helicopters would fly all over spraying this pesticide like they were pouring water on a fire. In the morning my car would be sticky with the residue.

Malathion is an organophosphate and can affect the nervous system. One symptom is trouble swallowing. Right around the time they were spraying I had my first episode of a pill getting caught in my throat. Thank God my mom was there because I could not swallow, breath, or ask for help. Suddenly there I was standing in front of her motioning to my throat. She initially thought I was joking until she saw that milk was coming out of my mouth because my throat had closed. Realizing I was in trouble she jumped up and started doing the heimlich maneuver on me.  It was one of the few times I ever saw her cry. 

There is so much ignorance and misinformation regarding the consequences of mold/pesticides/chemicals.

According to Dr. Shoemaker 25% of the population has genes that make them susceptible to mold and/or lyme (I happen to have the dreaded genotype making me multisusceptible). He also states that 50% of housing has toxic indoor air. My guess is that figure is closer to 85% in low income housing.

These are some reasons why the past two months have been intense. I have a decision to make. I don't know-am I going to be someone who cannot remain functional living in conventional housing?

Monday, January 7, 2013

Urgent Action Needed (Advocacy)

Permission to repost and distribute widely:  

URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

Organizers: Robert Miller Patient/Advocate, Cort Johnson (Health Rising), Billie Moore Patient Advocate and Team


On December 20th, ME/CFS patients rose to the Challenge and Sent in 750 personal testimonies to the FDA Advisory Committee, requesting for Ampligen approval. 30 Patients, family and clinicians testified. The final vote was split, the panel will recommend to FDA to not approve Ampligen on 3 questions, but voted Yes, that Ampligen's safety profile is adequate for approval on a 4th question .

So We Must "ACT". This ACTION will be emailing the contacts below Everyday until FDA approval. We deserve treatment Now. The Final decision date is February 2nd , but it could come any day. We all need to start emailing Today and Everyday.

(The template below is for you to follow, you can just copy and paste for ease.)

Email Contacts Are:
HHS Secretary Katherine Sebelius, FDA Commissioner Margaret Hamburg, Director Janet Woodcock, Deputy Director Sandra Kweder, Senator Richard Blumenthal, Senator Robert Casey, Senator Kay Hagen, Congressman Joseph Pitts


Subject: Approve Ampligen Now


The FDA should approve Ampligen by Feb 2, 2013. The advisory committee voted that Ampligen's safety profile is adequate for approval. Patients and our physicians must have the opportunity to access a treatment that has shown such promise for ME/CFS patients. Failure to do so will leave us with no FDA approved options to treat this disease.

The FDA has stated that ME/CFS is a serious and life threatening disease. Yet, without treatment, patients and their families are left to suffer. Many of us are bedbound or homebound. We are in constant pain and suffering, abandoned to bodies that torture us every day and demands that we parse out our activities like a single piece of bread that must last for a month. According to a DePaul study, patients are more likely to die prematurely from cancer, heart failure or suicide. This is the long-term reality of living, untreated, with ME/CFS. Imagine living with an untreatable disease so terrible that you would choose suicide to escape it.

750 written and over 30 in-person patient testimonies, including that of the AAC patient representative, conveyed how this devastating disease impacts our lives and the imperative of weighing the opportunity to benefit against the risk of no treatment to escape from this terrible physical burden and get back even a piece of our lives.
For us, even small improvements have a very significant impact on our quality of life, which were dismissed by FDA statisticians. It's evident that Ampligen has provided benefit to patients, with the testimony and data pointing to meaningful change in our ability to function and care for ourselves.

The true nature of this disease and the plight of patients have been ignored for too long. Patient testimony and patient and clinician experience provide evidence that this drug works in many patients. A number of AAC members agreed that Ampligen helps and other members noted that they saw an indication of effectiveness in some patients.
Let patients and their doctors decide whether the only treatment in FDA clinical trials for ME/CFS is the right medicine to provide relief from the living death that is our reality today. Remember that the disease itself has a collateral impact that creates its own serious risks for patients.

The advisory committee voted that Ampligen's safety profile is adequate for approval.

Approve Ampligen by Feb 2, 2013. Anything less is condemning ME/CFS patients to years more of continued suffering without any hope of relief.