Sunday, August 25, 2013

Starting High School

Ok, I had finally been diagnosed with Chronic Fatigue- took long enough!!! I know that it would have been nice to know that I was not crazy when I didn't get better. The time between getting diagnosed with mono and getting diagnosed with CF, I kept pushing myself harder and harder until it made me sicker and sicker because I realized that I was supposed to get better, and I was trying to put mind over matter and mentally make myself better. Well, it really didn't work and it was a roller coaster of me trying to get caught up in school, pushing myself to do more, and then I would literally crash and burn and be almost at square one all over again.

Once I was diagnosed with CF, I was able to get a doctor's note to cut down on the number of classes I took, so that hopefully the cycle where I would crash and burn would be stopped. I ended up going half days to school, in the mornings because I did better in the mornings. I would then go home and take a 3-4 hour nap in the afternoon. The doctor's note allowed me to do this; however, it was made clear to me before I even started high school that I wouldn't be allowed to graduate unless I got ALL of the credits required. That was not feasible for me, so I accepted (grudgingly) that I wouldn't be allowed to graduate with all of my friends and classmates.

I went with my mom to the counseling center to get my school schedule changed from the generic one I was given (full day, specific classes required) to my schedule which I got to pick whatever I wanted since graduation requirements didn't factor into the equation. They looked at my last name, and started to sign me up to speak to a counselor, and my mom said "we are going to see another counselor". In the end, my mom got her way, and I was able to get a counselor who listened to what I wanted and who had no problem making changes to my schedule. I wanted to take classes that I wanted, so I took subjects that interested me the most- history and science (biology). I found teachers who actually taught, rather than having endless amounts of busywork, which I did not appreciate since I was in school to LEARN......a new way of dealing with school that I didn't quite have before. I transferred out of classes if I truly wasn't learning anything, if they teacher couldn't (or wouldn't) teach in a way that I could learn. It did confuse some people when I would go to transfer and they would ask me why and I would say "I am not learning anything, it is wasting my time and energy".

Monday, August 12, 2013


Aug 12, 2013

It was in the spring of 2004, Maddy was close to finishing 9th grade. She had missed a lot of school, not surprisingly, and I was sitting in the counselor's office talking about that fact. I said that her mono had really made it hard that past 15 months. The counselor, Mrs. I, said "Mono doesn't last that long." Somehow, in just dealing with life and Maddy's illness, I hadn't stopped to process what was going on. It turned out that Mrs. I's daughter had chronic fatigue, and as my brain finally kicked in, I asked for what doctor she went to. I was actually given another doctor's name. Dr. F was a pediatrician who had several patients with CFS, and Mrs. I had good things to say about him. (When Mrs. I's pediatrician was out of town, Dr. F was the back up doctor.) I came home from the middle school, got on the Internet and started looking up CFS, symptoms, etc to learn more about this condition and if it perhaps applied to Maddy.

Boy, howdy!!!  It was an amazing relief to see how her symptoms matched the criteria. Of course, self diagnosis is not necessarily right. I called and made an appointment with Dr F. It was several weeks out (the whole new patient business). I had Maddy's medical records transferred to Dr. F's office so he could look at her medical history. When the appointment day came, we didn't know what to expect. Dr. F took her more recent history, asked a lot of questions, ordered every test he could to rule out any other condition, observed Maddy's mono shuffle and referred her to a neurologist for evaluation. It was obvious by the way he talked with us that he believed that CF was real. He just wanted to make sure that there was no other explanation for Maddy's symptoms. I understood and appreciated his thoroughness.

Going to the neurologist was the next step. He ordered an MRI, so a few days later we appeared bright and early at the MRI place. Maddy was the first patient of the day. When she was mostly prepped, I went into the waiting room, and settled in with a book. Not long after, the technician came out. Maddy, in reaction to the IV contrast dye, had vomited inside the MRI machine. They were done with Maddy for that day. So we left, and the poor technicians were busily scrubbing out the machine because they had more patients coming shortly. A few days later, the MRI was repeated without the dye.

So after all the test results came back, there was nothing abnormal. So as the default, Dr F diagnosed her with CFS and suddenly we had the doctor and the diagnosis in order to help Maddy. Together, Maddy and I discussed what would be most helpful to her, schedules, how teachers could best assist her in class, etc. It felt good to be able to DO something proactive instead of just going with the flow.

Where was Maddy's regular pediatrician in all of this? Well, he was not helpful at all. I really like the man, he had served our family well since my first child was born, but he had a blind spot when it came to things like mono, chronic fatigue, and a couple of other conditions that he really slipped up on. He had diagnosed and treated some bizarre conditions in my kids, so he was not a slacker. I have since had to accept that physicians are people, too, and can make mistakes. It would have been much better if he had been able to diagnose CFS and be the support that Maddy needed. It was not to be.