Catch Up Mondays – Aspergillus Flavus – revisited

I have posted this before but am including it in my “Catch Up Mondays” because it is important for those just learning about fungal infections and/or bone infections.  This was first posted in May 2012.

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

Lottery Workers Sickened by Mold

I  read this article yesterday on the Aspergillus Website Blog.  I became infuriated at how lottery workers were sent into a warehouse to verify lottery tickets six months after they were flooded during Superstorm Sandy.  The workers were given suits, gloves and masks.  They were not given respirators because they felt the workers wouldn’t be able to safely operate them without training!  The result of this negligence was headaches and respiratory problems.  And as many mold victims will say, this may only be the beginning of their problems.

In my opinion as a mold survivor, what difference would a day or two (if necessary) of training for these workers have made?  So what if the tickets weren’t verified for a few more days?  It had already been six months.  I would love to hear what you have to say after reading this article.

 

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New Subscribers

Thank you to all the recent new followers to this blog.  I have been having some brain fog issues and finding it difficult the past few days to do much of a post.  I plan on getting back into the groove this weekend.

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Back Cover Photos

One of my possible back cover photos

This is one of the photos that I am looking at as the photo for the back cover of my book:  “Allergic to Life:  My Battle for Survival, Courage, and Hope”.  I am thankful that my daughter’s boyfriend is an excellent photographer and editor. I may try to post more in the next few days.  I am getting so much closer to finally submitting everything.  I still need to get the cover photo done (and we are working on a design idea) and two inserts from my daughters.  The final reread is happening now.  The whole book as been printed in book format and I have started going through it for what I hope is the final time.

Why did my face feel like it was being pulled apart?

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Aspergillus Support Group

I had a great meeting with fellow aspergillus sufferers here in California.  It was great to compare notes and discuss our health and treatments in general.  I have mentioned the aspergillus website in a previous post.

Not all Environmental Illness Patients Are Equal

People have often asked why there  aren’t more support groups where sufferers with MCS (multiple chemical sensitivity) can gather. One thing I discovered in the beginning of this journey is that we don’t all have the same sensitivities, sensitivity levels or tolerances when it comes to MCS.  While I may tolerate newsprint and be able to read books, another friend cannot.  While one friend may tolerate a certain fragrance free shampoo, I may not.  Trying to get people together with such different and extreme sensitivities along the spectrum is often difficult.  There is also the difference in sensitivities to public buildings.  Where could we meet?

I had a friend when I was in treatment in Dallas who needed to stay in my room for a while.  In order for her to stay, I needed to keep all my books and papers in Ziploc bags.  I could not have the water on in the condo while she was there because she was too sensitive to the chemicals in it.  While I couldn’t drink the water (which was filtered) I could still wash my hands in it and wash out my clothes.  I made concessions for her to be able to stay with me.

Mold exposure sufferers have yet another problem.  While there are those who are ill from a mold exposure, they may not have made the heart wrenching decision to part with their belongings or even know that these belongings could be keeping them ill.  Being around someone’s belongings that have mold spores can send me into a severe reaction.  Again, where would we meet?  Trying to find a safe place that does not either have mold or chemicals that more than one person can tolerate presents problems.

Finally there are also those with electromagnetic field sensitivity (EMF).  These people deal with the horrible pain associated with electromagnetic waves.  Something as simple as a cell phone can send them into excruciating pain.  Wireless internet, computers, televisions and for some the electromagnetic waves coming off their stoves when ovens are turned on can cause pain.  One of my best friends would not be able to come into my home until I turned everything off: my cell phone, the computer, the television, unplug the cordless phone, the oven.  I would also have to put my books away in plastic bags or tubs.

We are all suffering the same and yet we are so very different.  I would love to meet with others but finding others with the same or similar sensitivities as me is not easy.

Aspergillus Flavus

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

Could My Office Be Making Me Sick?

While I was in the midst of my six weeks of antibiotics, my boss began to wonder if the office could be making me sick.  The office was tested and there was moderate growth of several species of mold.  Yet the tester didn’t believe it was making me sick since I had at first been presenting with sinus infections and we had yet to get fungus to grow out of my sinuses.  (I have learned since that fungus is very picky and sometimes will not grow in the culture plates every time.)  I had not been sick like this until after starting work in this building.

Meanwhile as I sunk deeper into depression I was sent to a doctor in the Bay Area because a RAST test had shown very high allergies to mold and some foods.  I couldn’t believe my ears when I was told that I had to quit eating many of my favorite foods including chocolate, soy sauce (there went my Chinese Food lunches with friends), corn and wheat (Practically everything has some form of corn or wheat in it.)  What was I going to eat?  Was I expected to learn to make foods without all these ingredients?  As the depression got worse I phoned a friend.  From my book:

I began phoning a friend who was a grief counselor.  I talked to her quite frequently.  What was wrong with me?  Why did I feel so bad?  I had never felt like this before.  I just couldn’t quite put my finger on how I felt but I knew that I was in pain.  It wasn’t like the pain I had in my face.  I hurt deep inside and felt empty.  I felt that there was no end to my being sick and that no one could really understand what I was going through.  I told my friend that I now understood what drove people to suicide.  I had never and was not now contemplating it but understood how they must feel.

I had been crying a lot and Dr. Spitzer put me on an antidepressant in hopes of stabilizing me.  He also wrote a note stating that I needed some time off from work to allow the medication to work.  I felt better for a while and had more energy.  I cleaned my house like a wild woman.  The wonderful feeling didn’t last long and surgery number three happened August 1, 2000.  Three surgeries in nine months!

Daily Posting

I thought I would be able to post daily to my blog.  I have come to realize that my body will decide how often I post.  I have several good days and then a bad day or two.  This is day two of bad days.  I have had a constant headache since yesterday.  Is it the high pollen count and I am being affected by it because my shots have not totally kicked in yet?  Or is it the quality of sleep I am getting?  I also suffer from trigeminal neuralgia due to all the sinus infections and bone infections I encountered from my mold exposure.  The nerves could also be acting up.

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Thank you all for visiting my blog and I look forward to being able to post more excerpts from my upcoming book.