I had been waiting and waiting for a mask that the judge had ordered I have to try to safely go into the rest of my defense doctor appointments. After some bad reactions to chemicals in my scheduled appointments, we thought maybe a different kind of mask would work. It was supposed to arrive in time for me to out-gas it enough to be able to use it. A few weeks after my deposition which we held in my driveway in July of 2004 because I was unable to go into the courtroom, my mask arrived. From my book:
A few weeks later the mask arrived. It was not what I had expected! I had envisioned a mask that would cover the nose and mouth. What I got was uglier than I expected. It covered my entire face! The next morning I began putting the mask outdoors in the sun and would bring it in at night. Shortly before my scheduled appointment the mask was still making me sick when I put it on. I scheduled a phone consultation with Dr. Rea regarding what I should do when I attended the appointment. He suggested that I wear my charcoal mask and a Tyvek suit (in case of mold in the building) and, if I started to get sick, to leave as soon as possible. I phoned Mr. Keeling and told him what I was going to do. He gave me the same advice. If I got sick, I should leave.
I was becoming more and more depressed at the fact that I had no nice clothes to wear—or a need to wear them, for that matter. In August I wrote, “I feel bad that I have no need for nice clothes. Hell, I could almost wear a potato sack around. I used to love to look nice—nice outfits with my jewelry; shoes and hair done nicely and make-up on. Now I dress shabby, my hair is a mess, I don’t wear my pretty jewelry, I don’t wear any make-up—After all, ‘WHO CARES?’ ‘WHO SEES ME?’ ‘WHERE DO I GO?’ ‘WHY DO I NEED TO LOOK NICE?’As Rick says, ‘You will only end up throwing it out’.” I so needed to hear that it was okay to get things and if something happened and I had to toss it, so be it. But I didn’t hear those words.
The depression continued mounting. I wrote, “I want to try and work on my book…. I want to toss and tear and shred right now! I want to DESTROY as my life has been DESTROYED. I want to blame everyone because they are doing what I cannot! I hate everyone because they are doing what I want to do.”
For my next appointment I wore a tyvek suit and my charcoal mask (I Can Breathe) since I had not been able to tolerate the one provided for me. In my book I write:
Just as I was ready to turn and go back outside, they called my name. We were taken back into the inner office and I was led to an exam room. I could smell something very strong as soon as I got near the room and told the medical assistant that I could not go into the room because it had a strong smell in it. She looked at me and asked if it would help if she turned on the air conditioning. I said that it would not help and then asked if they had an air filter that could be put in the room. I was given a blank look as she responded they did not. (This was supposed to be an office where they understood chemical sensitivities, yet the office had a strong chemical odor and there were no air filters.) I then asked if I could just be placed back into the room where they had done my breathing test. It was not perfect but it was better than the first room; however, it was being used to test another patient. By then I was getting frustrated and asked if there were any other rooms that did not have carpet in them that I might be able to use. Reluctantly, I was placed in a room. This room had the treadmill in it….
…..After listening to my lungs he (the doctor) asked a few more questions. The doctor told me that I could do the treadmill test and leave. As he walked out of the door, he patted Rick on the shoulder, as if to say, “You poor, poor man.” Within just a few minutes, a technician came in and said that I would have to sit in the waiting room for about 30 minutes while they did the treadmill test on another patient and then they would do mine.
Once again, I had to stand my ground. I explained that I was sick. My attorney had told me that if I got sick I could leave whether or not the treatment was done. I explained that I was at that point, and the doctor had just told me I could have the test and go home. Either I had the test done right then or I was going home without it. There was no way I was going to sit in the waiting room, and I was not going to stand outside for another 30 minutes. She left the room and came back a minute or two later, saying that she would do my test first.
I lay down on the exam table while she hooked up the electrodes to my chest. When everything was ready I was asked to stand on the treadmill. A mouthpiece was put in my mouth and a clip to my finger. The track began to move and I stepped on. I was asked if I was okay, and I nodded that I was. The elevation of the track was increased a little, as was the speed. The technician asked if I was okay. I used my hand to symbolize that I was doing so-so. Once again the speed was increased, as well as the elevation, in an attempt to put more stress on the body. Immediately I knew that I was not going to make it. I began having difficulty breathing and felt dizzy.
Rick, who had been closely watching me, jumped up and grabbed me off the treadmill and ordered that the machine be turned off. He tried to have me stand next to him but I just slid to the ground. I began gasping for air and coughing. The technician asked if I wanted water. Rick told her it would not help and asked me if I needed my inhaler. It had not been four hours since I took it during the breathing test and I was afraid to take it again. While he tried to convince me to take the treatment, he reached for the garbage can and sat it down in front of me. My coughing spells often lead to vomiting.
I continued to cough and finally agreed to take my inhaler. Slowly my breathing and coughing came under control and I was able to get myself in a standing position. Rick took the electrodes off my chest and helped me get my things ready. I realized then that we were the only ones in the room. I was having a difficult time, the technician did not stay in the room, and the doctor had not been brought in to check on me. As we walked out of the room and into the inner office with all its smells, Rick had our parking pass validated. Not a single person asked if I was going to be okay. They just let us walk out of the building. Everyone in the waiting room was staring at us as we left. As we walked out, I was leaning against the wall to keep from falling, and I know that they had to have heard the gut-wrenching coughs I was making in the room next door.
This is just one of many times I have dealt with doctors who have discounted my reactions and my complaints. I know many of you readers have dealt with similar situations during the course of your battle with environmental illness.
My god, how awful for you to have to go through that. It’s unbelievable that you had to have testing in a carpeted room. You’d think they’d know better than that? I think you are amazing for telling your story and I can’t wait to read more. I need to find a better mask…
Masks are had to find. I use the I Can Breathe mask but it isn’t fool proof and sometimes I have added an extra charcoal filter in it. The plus side is that it is not heavy or cumbersome. I know you would think that doctors who “say” they specialize in sick building, etc. would have safe office buildings.
The sad fact for all of us mold survivors is that the majority of conventional medical doctors are not educated about mold, therefore have no idea how to treat us “safely” and effectively.
I too have had just a “tiny” taste of what Kathy is describing that I will give as an additional warning here for others.
After having 3 anaphaylactic reactions to 3 different mold exposures in one week, 2 of which put me in the ER, I was sent by my primary care doctor to an allergist.
This allergist began my exam by telling me she did not believe in “toxic mold” and I should have walked out of the exam at that point, but since I was in a Work Comp case, I did not.
Next she put me face down on an exam table, gave me a dozen different skin pricks of 12 different species of mold at once and left me alone in that exam room for 15 minutes. This test was done to me less than 30 days after my exposure to toxic mold.
All the skin pricks came back negative and so she told me I was not allergic to mold and diagnosed me as having vocal cord dysfunction. A mis-diagnosis that was to “haunt” my Work Comp case and that I could well have done without.
3 months later I finally found an allergist that was willing to test me again….all the other allergists that I tried to get a second opinion from would not agree to test me once they heard I had anaphylactic reactions as they feared they might kill me with the tests. You see then how “ignorant” the first one was to even test me, much less leave me alone face down for 15 min???
When I finally found another allergist that would agree to test me, she reduced the amount of allergins in the skin pricks and made sure I was watched, not left alone and that things were in place in case I had another sever anaphylactic reaction to safe my life.
The other patients in that testing area must of thought I was nuts when I began to welt up and therefore proved that I was indeed severely allergic to certain species of toxic mold!
By the way…..my pathologist told me that it takes the body 30 days at least to build up the antibodies needed to get positive allergy test results, so again the first allergist again was ignorant even of that fact!
Be your own best advocate in the doctor’s office….and research, research, research before you go so that like Kathy you can make sure that no life threatening procedures are done to you…..don’t trust the doctor and his staff to know more than you do!!
It is also possible that once your immune system becomes so compromised your body can’t react to the skin pricks even when you do have a severe allergy.
opps, I meant to say they must of thought I was nuts when I was literally jumping up and down with joy to see those welts on my arm!!!