To Thin Or Not Too Thin? (Part 1)

Hello Everyone

I am still dealing with my partial deep vein thrombosis. In my last post dated October 1st, Be Careful Around Sharp Objects, I talked about discovering that my INR (prothrombin clotting and international normal ratio) was at 5.9 and I was to stay off the Warfarin for 2 days and retest on Friday, October 3rd. I did the retest and my level was still at 5.9.  My doctor had me to continue to stay off Warfarin through the weekend and retest on Monday.  Monday my level was 4.3 (still too high).  On Wednesday my level had gone down to 3.7 and my doctor’s MA phoned and said I was  to start up again but at 4 mg.

As I have said many many times, you need to listen to your intuition. Your gut does not lie. After doing some research I learned that my antifungal medication could have an affect with the Warfarin causing my blood to be too thin. I could not stop the antifungal without risk of a recurring infection.  I phoned my doctor’s office again and asked to speak with the doctor. I explained my sensitivities to medication and what I had learned about the antifungal medications. She agreed to have me take 2.5 (half of my 5 mg) tablet for a week and then retest.  I had my blood drawn this past Tuesday because I was meeting with the hematologist for the first time. My husband needed my car on Tuesday so I opted to drive the truck.  I got to the doctor’s office only to find that I had my necessary paperwork, a steno pad for notes, but not my Kindle (it was in my car). Following are the notes I wrote while waiting to meet my new doctor, the hematologist.

The first thing I notice about the waiting room is that it is quiet, there is no carpet, and only a few others are in the waiting  room along with me. Then I see the sign on the counter. It says something about being patient because the wait could be an hour. I can watch old reruns of Bonanza or I can sit and try and pass the time writing in my steno pad. Maybe I will start my blog post that I had planned to do a few days ago. My doctor is a Medical Oncologist and Hematologist so there is a lot of serious treatment going on in this office. A woman in a wheelchair has just been pushed into the waiting room. And of course the first thing I notice is the can of Diet Dr. Pepper in her hand! I am containing myself. All I want to do is run up to her and shout out how dangerous this is for anyone and particularly someone with health issues. Of course, I am sure this won’t go over well.  I can just see her face as she looks at this woman hiding behind the mask telling her what she should or should not be drinking.

The time seems to be dragging on. I work on this blog draft and I work on a short story. Anything to keep my mind occupied and off the reruns and what the hematologist is going to say about my leg and all the labs that have had me scared to death ever since I first learned that I have two mutations that can cause blood clots as well as a possible Protein S deficiency (although a test years ago said I didn’t have it).

Finally, the MA comes to get me. I am led to the back and all my vitals are taken. My blood pressure is 143/80. This is high for me.  Is it because it is late in the day? Is it the stress of meeting this new doctor and not only having to discuss my current problem but filling her in on all my past history? Is it the Warfarin?Then I am asked to stand against a wall while she takes a picture of me. Smile she says and I laugh to myself. Who would know if I was smiling or not behind the mask? I am then led to a room to go over the paperwork I had filled out and the list of my many allergies and sensitivities. Okay…she wants me to go over each medication I have placed on the list and tell her what kind of reaction I get from it because she has to list all this in the EMR. We are going to be here all day just doing this. Finally she says can you tell me which are the most severe. Taking the paper and pen I begin putting an “S” by those that have caused the most severe reactions. As I do so I say things like “this one sent me to the ER”, “this one caused photosensitivity”, this one sent me to the ER” , etc. until I am finished with the list. The MA tells me the doctor will be in shortly to talk with me.  By now I have been in the office about 45 minutes, something I am not accustomed to since Dr. Spitzer and Dr. Butler see me as their first patient.

The light in this room is so very bright! I can hear the clock on the wall tick tick ticking the seconds and minutes away. Between the light and the ticking of the clock I can feel my body being overstimulated! Should I turn off the light? I desperately want to drag a chair over to the door, step up on the cushion and yank the clock from the wall.  Oh how I wish I had my Kindle. I could distract my mind from the clock if I could only just sit and read. My eyes look around the room in hopes of finding something to distract me. There it is. Sitting at the sink is a bottle of antibacterial soap. Oh, please don’t let the doctor come in and decide to use the soap. Is it possible I can stop her first? I can hear chatter outside my room. There is so much going on that my poor brain is in overload and I feel exhausted just from the noise and light. I am so thirsty! I don’t dare drink anything because I cannot risk having to go to the bathroom. I really want to be here and see this amazing doctor yet my body is yearning for quiet and dark.

The doctor comes in (continued in Part 2).

I apologize if my thoughts are scattered and this seems to ramble on.

 

 

Catch-Up Mondays: I just want a new nose – revisited

I originally posted this on April 7, 2013.  My sinuses have been one of my biggest nightmares since the mold first decided to take up housekeeping in them.  Surprising (knock on wood) after all the exposures I received while being with my dad my sinuses have remained healthy while the rest of my body is still protesting.

Ok – we all at some point we all wish we could change something about ourselves.  I have never really considered changing my nose although it isn’t a perfect nose.

I am not talking about wanting a new nose because of the way mine looks.  I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like.  While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.

At one point I joked about getting a silver nose like the villain in the movie Cat Ballou.  Thinking, mold couldn’t grow in the silver.

Or maybe I could exchange my nose for one of these below.  They are all nice looking noses if they didn’t come infected with mold.

Or maybe I would try to see about getting Elmo’s nose.

A friend back in the beginning used to joke with me about how to get rid of the fungal infection.  Her husband was an AG teacher and they also lived on a ranch.  She told me she would just go and get some Dursban and pour it into my sinuses.  Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing.  Can you imagine putting that in your sinuses?  Not me.

What body part would you like new but not for cosmetic reasons?   If I chose cosmetic reasons, I would be changing out a lot of parts.

Catch-Up Mondays – I knew I was Sick But – revisited

This post was first shared here on November 2, 2012.  I don’t even think I have mentioned my entire diagnosis in my book.  My letter with the diagnosis would have been a good thing to have added. 

Someone asked me a short time ago to tell more about me.  Rather than go from the beginning I am going to talk about being sent to Dallas and getting my diagnosis.  I knew I was sick but had no idea how far-reaching the mold exposure had been in terms of my body.

I had been sick for about 2 1/2 years when I was finally sent to Dr. William Rea at the Environmental Health Center-Dallas through my ENT.  I arrived on a cold day in February 2002.   After meeting with Dr. Rea, doing lots of tests and being observed, a letter was written for me to submit to my doctors here and to my attorney for my workers’ compensation case.  Dr. Rea wrote an extended letter and I am going to try to give a synopsis of what he found wrong.

Toxic Encephalopathy secondary to mold, mold toxin and chemical exposure (when I was moved from the school with the mold to a new school being painted, etc. while we were trying to set it up for school to start)

Toxic Effects of Petrochemicals and Solvents

Toxic Effects of Mold and Mold Toxin

Immune Deregulation

Allergic Rhinitis

Food Sensitivity (only safe foods at the time were rabbit, venison, deer, elk, cranberries, acorn squash, eggs, raspberries)

Mold Sensitivity

Pollen Sensitivity

Chemical Sensitivity

Chronic Sinusitits

Chronic Fatigue

Fibromyalgia

Autonomic Nervous System Dysfunction

Multi-organ system dysfunction

Neurotoxicity based on SPECT scan

Hyper metabolic and hyper reactive state

I couldn’t sleep, I was on a nebulized antifungal, I was on so many medications when I arrived.  I would sit and look at the television and it was as if the screen was narrowing and moving toward me (a very strange sensation), my depth perception was a mess.  I would be in the testing room, take a drink my from glass water bottle and then set it back down.  Bam, glass and water would be all over the floor.  I couldn’t gauge when the bottle was on the floor unless I slowly lowered it and listened for it to touch the ground before I released it.  My short-term memory was just that, short-term.  My husband made me walk from our condo to the center so that I would be able to find it because I would not have a car when he went home.  Every morning we would walk the four blocks and when we got to the parking lot I wouldn’t remember where I needed to enter the building and my husband would once again have to show me.  Once in the building when I would leave the testing or exam rooms to go to the sauna, I would invariably turn towards the exit.  I just couldn’t keep my directions straight.  So much goes on at the center.  There is doctor appointments, lab appointments, provocation/neutralization skin testing, sauna, IV’s.  I soon learned that my weekly appointment calendar was my only salvation.  Every Friday I would schedule all my appointments for the next week.  I lived by that appointment book.  It was the only way I could remember where I was supposed to be at any given time as long as I could remember how to get from point “A” to point “B”.

In fact when I returned home after a long stay in 2003 and moved into my “safe” home my memory was still a mess.  One day I got up and put a pot of beans on to cook in the kitchen and then went back into my bedroom.  I still had no furniture in the kitchen or living room.  I pretty much lived in my bedroom with my army cot and blankets, my CD player and my television.  One afternoon my smoke alarms started blaring (all four of them from the entrance to each bedroom).  I began to panic!  MY HOUSE WAS ON FIRE!  Was there a wiring issue?  What was going on?  What would I do if my house burned down?  Where would I go?  I began walking through the house looking for any signs of trouble.  Then as I walked towards the kitchen it dawned on me that I had beans on the stove.  The beans had boiled dry and stuck to the bottom of the pan.  Since that time I have to set a timer whenever I put something on the stove.  The caveat to that is that I have to be within ear range of the timer.  I have turned the timer on and went outdoors only to see smoke coming out of my kitchen vent.

My autonomic nervous system was a mess too.  I would go to bed and the slightest movement (me rolling over or me just moving in the bed) would send me into horrible state.  Imagine being at the top of one of those rides at an amusement park where you are raised to the top and then dropped.  That is what it felt like to me.  And this would happen over and over again all night long.  If I tried to get up and go to the bathroom the mere act of lying back down would set it off.  This went on for months and months.  I haven’t had a severe reaction like that in a very long time.  I still get that sensation occasionally but thankfully it is not my nightly companion.

My life has been turned upside down and inside out.  I say I live in the Twilight Zone or Bizarro Land.  I make the most of what I can do and have to accept my limitations and my losses.  The depression was eating me alive from the inside out and I had to make a decision.  Either I let the depression and loneliness and sadness take over my life or I had to learn to change the way I perceived this invisible illness.  I have chosen to try to change my perspective.  I try to stay positive, I try not to feel envious of what others can or are doing, I try to be grateful for what I have and not dwell on what I don’t have.  When friends tell me they are going on a cruise, or going to another country or on some long weekend, jealousy starts to set in and depression rears its ugly head.  Sometimes it is hard to hear the stories from their trips when they return.  I had been home from Dallas for about a year when my husband had the opportunity to go to England as a chaperone with his high school.  Oh how I was envious.  I wanted him to go, but I didn’t want him to go.  I didn’t want to participate in the plans, didn’t want to hear where he was going, didn’t want to think about being here alone at home with him far away having fun.  Once he was gone I decided that this allowed me the freedom to watch whatever movie I wanted to watch or watch movies all day.  I could sit in my bed and read all day if I wanted to.  I ate when I wanted to.  I got in my car and drove around just for the sake of driving around.  I was good until he came home with pictures from the trip.  Sadness welled up inside of me as he told me where he had gone and explained what he had seen.  I wanted to just bolt.  I didn’t want to hear the stories, didn’t want to see the pictures, didn’t want to feel the sadness.  Finally I realized I wasn’t being fair to him.  He was excited about this amazing journey and what he had seen and done.  I listened and I looked and I put on my brave face.  I have to say, however, that I haven’t looked at those pictures since and hate it when we are watching a movie and he tells me that he has been to that fountain or that museum.  I may be getting stronger every day but the realization that I probably will never make that kind of trip is hard but I am becoming more okay with it as time goes by.

Catch Up Mondays – Comparing this illness with cancer – revisited

This was originally posted on July 12, 2012.  Again, I stress that I am not minimizing anyone’s battle with cancer.   I was lost and no one seemed to truly understand what I was going through because what I was going through was not accepted or understood like cancer.

Back in the middle of this illness as I was losing friendships, losing my self and realizing not very many people really understood what I was going through, I began comparing my illness to someone with cancer.  What I wrote was in no way meant to minimize cancer (I have had my fair share of cancer scares.).

Not it’s not cancer

            Cancer patients take treatments and either

                        are cured or die at the end of so many months

            I don’t want to have cancer

            I don’t want the treatments but am not

                        afraid to die

            I will not die but how much

                        better will I get – there is

                        no answer

            No, it’s not cancer

            It is mold and chemical sensitivity

            Cancer patients, at least in the beginning,

                        can go out to the mall, to movies, to visit a friend

                        go on trips and stay in hotels

            I cannot go do all these things

                        and when I finish treatment

                        my limitations will not change

            It is not cancer

            Cancer patients are understood

                        because their disease is understood

            My disease is not understood by

                        many

            Few can fathom the world I have

                        been forced to live in.

            Few can understand that mere mold

                        can be so devastating

            It is not cancer

            My body is not ravaged by it

            My body has been ravaged

                        by mycotoxins – which

                        ironically can cause cancer

            I will not die and leave

                        this world for a spiritual one

            I will leave this world for a world of

                        shelter, loneliness, and isolation

            I will give up my “things” for ones

                        less beautiful and comfortable

            I will give up my pictures and

                        collections in trade

                        for their memories

            I will give up my lunches out with the girls

                        for a bowl of beans at home

                        by myself

            No it is not cancer

            But a different sort of cancer has taken

                        my life away and left me

                        caged and feeling very alone

A friend who also has suffered with the ravages of mold exposure and the loss of friendships, dealt with the isolation, and fought back recently sent me the following link.  While the link deals with what to expect when you are diagnosed with cancer, a lot of the same things apply to having this illness.  I was truly moved by what the author wrote.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

Catch Up Mondays: Why did my face feel like it was being pulled apart? – revisited

This was originally posted on June 13, 2012.  Surprisingly when I have looked at the search engine terms that have led others to my blog, this has been a question posed more than once.  I guess I am not the only one who has felt like this.  — A side note is that at the end I talked about my cover photos – – the cover is done and everything has been submitted.  Hooray!

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.       

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.

Sinus Health

As most of you know from following along here with me that I have major sinus issues. It all started when I was exposed to mold in my work place and then it decided to set up housekeeping in my sinuses, my left sinus in particular. I was instructed to irrigate my sinuses daily and up to four times a day when fighting an infection or allergens. I have irrigated always with salt water but at times have also added baking soda, betadine or silver. Sometimes upping the amount of irrigating helps keep an infection away and sometimes it doesn’t.

I have had numerous sinus surgeries but thankfully nothing since 2003. I take antifungals as well to keep the fungus in check.

 There is a simple saline nasal spray that some have used to keep their sinuses clear and help with swelling and inflammation.

 Some swear by their Neti pots.

Then there is this contraption.

What my doctor recommended, however, is the Grossan Sinus Irrigating system.  I have immotile cilia most likely from all the infections.  What I like about my Grossan system is that there is a pulse to the water similar to a Waterpik.  I can adjust the flow and pulse of the water entering my sinuses thereby getting more of the mucous to come out of my sinuses.  This is the system I now use.  I also now buy Saline Solution from the pharmacy rather than having to mix my own.

My Sinus Irrigating System

Ground Hog’s Day

I know that I am a little early for celebrating Ground Hog’s Day but I had a repeating dream last night. I was not in a deep sleep because after the dream repeated itself I realized that I was aware of the dream and could think about it.  I began thinking about the dream and trying to analyze it.   I immediately thought of the movie Ground Hog’s Day because the dream would repeat itself over and over as if it were a recorded loop. After a while I decided that I had to get up and write things down if I was ever going to release myself from the grip of this dream and actually sleep. At 2:30 this morning I got up. I grabbed something to eat, made something warm to drink and sat in bed with my steno pad.

It was the kind of dream where you wake up and wonder where you are. How did you get there? What happened to the time that you are missing in your mind? I often find myself wondering where the time went. One day I am a forty-four year old woman and the next I am fifty-eight years old. I spent so much time and energy fighting constant illnesses and infections, battling allergies and sensitivities, going through surgeries, living in isolation, fighting for validation in court, and fighting for my life, that it is hard to grasp where the time went. It is as if I went to sleep young and healthy and woke up old, sick and gray. There are no major events or excursions that one might have to mark the passage of over ten years. Yes, my daughters graduated from college, one got married and grandchildren were born. Yes, I had birthdays and anniversaries but these birthdays and anniversaries weren’t really celebrated in a way that would leave a positive impression.  There were no big parties to celebrate a milestone birthday or anniversary.  I didn’t go on any big trips across country or to Europe.

This dream may have been precipitated by a book I am reading, Before I Go to Sleep: A novel. In this book the main character has had an injury that allows her to retain memory as long as she is awake but once she goes to sleep those memories are gone and she wakes to find herself in a strange place and in a body that is older than she remembers.  I can sympathize with the character in this novel.  There are days when I look in the mirror and wonder who the person looking back at me is.

The loss of time topic, so to speak, is a conversation I have had with others who suffer from Multiple Chemical Sensitivity and other Invisible and Chronic Illnesses.  We all share the same sense of loss of time.  When asked how old I am, I have to think because it is hard to fathom that time went on without me fully participating in a “normal” life.

I don’t sit and bemoan this any more, but I did.  It used to fill a lot of my waking hours.  There are times as in last night’s dream that these questions haunt me.  I realize that things happened during that time.  I lived through it but there are a lot of painful and scary moments during that time that may act as a sort of amnesia and thereby leaving me with a sense of time lost.

With any luck after sitting up this morning writing in my steno pad and typing it here, that sense of loss will be gone and the woman in the mirror will feel more familiar and less a stranger.

Nothing was working!

I had endured three sinus surgeries and had just had my fourth on June 12, 2001.  In the time of about twenty months I had gone through four sinus surgeries and was still dealing with pain and constant infections.  The fourth surgery was from a doctor in Southern California.  As with most of my doctors I communicated a lot via fax messages.  It was easier for me to get my words, questions, and frustrations out on paper.  I didn’t have to rely on the doctor being available and he could simply reply with a fax or a phone call at his convenience.

On June 25, 2001 I faxed my newest doctor.  (Excerpt from my book)

I am still running the fever and have pain, particularly in the left sinus area.  I am trying to get a handle on what is causing this as quickly as I can.  I take a pain pill a half hour before I go to bed so that I can sleep and wake up hurting so bad that I take pain pill so that I can function.  I am due to return to work Aug. 1 after being on leave of absence since March.  I still can’t believe it has been almost two years since I first got sick.  I feel like I am not any closer to a solution than I was back then. I am frustrated that I don’t seem to respond to the surgeries, IV therapies, and other treatments I have endured. Every time we think we have the answer, it doesn’t work, or I become ill again a short time later.  Maybe I need a total body scan.  If Dr. D—-agrees to the bone scan, I have listed the hospitals that I could go to….

On June 27th I wrote another lengthy note and faxed it as well.  I had enumerated 10 things.  From my book I list a few of those things.

3. I had an infectious disease doctor recommend Amphotericin through IV…My allergist isn’t too sure about it.  I am ready for the ‘Big Guns’ at this point…5. I am at the ‘BREAKING POINT!’  Thank GOD for the Remeron…9. I need assurances that things are going to get better.  Nobody can really understand what this has been like unless they have lived it….10. HELP! HELP! HELP!

When I said I was ready for the ‘Big Guns’, I meant that I was willing to risk everything and try the Amphotericin-B (what doctors referred to Ampho-Terrible).  It was such a bad drug and had to be administered and monitored in the hospital.  Fortunately for me, I never had to take it through an IV.  I also mentioned Remeron in my second fax to the doctor.  Remeron is an anti-depressant that my doctor had put me on almost a year earlier when I was having such a difficult time dealing with all the illnesses that kept bombarding my poor body.

Workers’ Compensation Defense Doctor #1 Appt. Report

By now hopefully you have read yesterday’s post about my first defense doctor appointment. I felt ill for days after that appointment. Towards the end of June of 2004 I received a copy of Dr. ______’s report from my attorney asking me to comment on it. Following are excerpts from my letter to my attorney. The text in black is Dr. ____’s comments in his report. My comments are in blue and red.

Page 3 Paragraph 2 – Dr. S (using letters to indicate doctor names mentioned in report) performed a third surgery in August of 2000 and again found sinusitis. He does not mention the culture taken 2 days before the surgery which revealed fungal growth approximately 2 weeks later.

Page 5 PHYSICAL EXAMINATION – Indeed, the false ceiling in the exam room had water stains but so did the false ceiling in my office, where she and her husband sat for an hour-and-a-half.  He did not mention that during the time I sat in his office I was wearing my mask with 2 charcoal filters in it.  He did not mention that during the hour-and-a-half appointment in his office I became hoarse and gave myself a histamine/serotonin injection.  When in the exam room, I had to remove my mask so that he could examine my sinuses and throat making me more susceptible to allergens.

She indicated that her husband would place her in a Tubex suit, also wear one, as their clothes had become contaminated.  (Tyvek)  He does not mention that he said if I stayed there he would have to phone for an ambulance to which I responded that an ambulance would make worse especially if they tried to take me to a hospital.  He also did not mention that he said if I had any more appointments that I should insist they come to me.  Was he trying to placate me into thinking he believed me or did he believe me but because he is part of the defense, he cannot say that?

Page 6 Paragraph 3 – ….yet, individuals with hypersensitivities from their workplace initially note worsening while at work, improvement away from work, and then worsening upon returning to work; but neither she nor her physicians reported this typical history….The notes from Dr. S during my October 30, 2000 office visit where he states that I walked four miles to his office.  (I was having trouble with the dizziness from the Neurontin so I walked).  I had began walking to other appointments, to meet friends for lunch, etc.  Therefore I was doing better and then became worse shortly after being allowed, as Dr. S wrote in in a note, “to attempt to return to work”.

Page 6 Paragraph 6 – Ms. Treat was the first to raise concern about possible mold exposure at her employment, especially because of a “mildewy” smell at work.  Dr. S suspected a fungal infection in January 2000 after I began blowing black mucous out of my sinuses.  I mentioned this to my boss, Mr. S, that Dr. S thought I had a fungal infection.  When I continued to become ill, Mr. S directed the district office to have our office tested.  The report done by ____ states that she was asked because of the smell in the office and a worker was constantly becoming ill to test the office building.  Even though moderate amounts of mold were in the report she stated it couldn’t have made me ill.  …We had not yet been able to get the culture in my sinuses to actually grown fungus even though I found out from Dr. M and Dr. R that this is many times the case because fungus does not like to grow outside its environment.

Page 6 Paragraph 7 – Only after her suggestion did Dr. S, and then Dr. M consider mold hypersensitivity; yet, I found no record of any of the many available tests for mold hypersensitivity.  Dr. S suspected fungus as I said in January 2000.  I told Dr. S about the test results of the mold tests done in our office when our office received them.  Dr. S said he wanted to do a RAST test on me to test for mold.  Dr. S ran the test and included some basic foods when the test was done.  The test showed an elevated IGE to many molds.  (This information is in his reports and in a letter to Dr. M.)  Dr.M considered mold hypersensitivity to mold after I was referred to him…..He could not believe how high my mold antibodies were…..Did Dr. _____ not even look at these test results?

Page 7 Paragraph 6 – Because of her persisting complaints, she eventually elected to transfer to a different work site but was also unable to tolerate her new location because of an intolerable smell.  Still, an offensive odor should not be confused with sensitivity to fumes and vapors, which was never established.   I was offered the transfer to the new school because both Dr. S and Dr. M said that I could not longer work at _________ because of my sensitivities to mold.  When I started at the new school they were painting, putting down carpet, installing, sod, etc.  By the time I arrived at the new school I had no sense of smell and could not smell the new carpet or the paint.  Therefore, I could not have thought I was reacting to something that I smelled………I was on leave not because I thought I was reacting to the new school but because I had been taking Amphotericin-B through a nebulizer and was reacting to it and having difficulty talking and Dr. S felt that if this didn’t work I might have to take another IV medication which could be life threatening considering my sensitivities.

This is just a small amount of all the comments I responded to in the first defense doctor’s report.  So what at first may have seemed like this doctor was sympathetic to my plight in stating I should have future doctors come to me, he was not.  Nor did he mention any of this in his report.  Workers’ Compensation is a tricky thing to navigate.  There was no way I could have done it without a very amazing attorney.