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.