A Blog about Recovery from Chronic Fatigue Syndrome, One Nib at a Time
Category Archives: 2. Diagnosis
Stories from the two years it took to get diagnosed and the following two years to find a doctor. Corresponds to “hearing the summons”, the first step of transformation or response to change. See “Amazing Coincidence”, one of four posts in the Introduction category.
“As children we’re often pushed by our parents and teachers and with good reason. Like mother earth … they want us to fly. And it can be difficult to understand when someone does not need a push, they’ve developed invisible limitations.”
Do you think I should send this letter to “Addison“? Please tell me by selecting yes or no at the end of this post!
Dear Dr. Addison,
I thought you might like to know what has happened with my health since we last spoke in 2006. You may remember that at the beginning of that year, I complained of fatigue that prevented me from working or leading the life I knew in any way; unquenchable thirst; feeling like I had been hit by a truck after I tried to push through my fatigue and go for a small walk; insomnia; various kinds of digestive distress; and pain in my joints, particularly my wrist. It turns out that I’m suffering from Chronic Fatigue Syndrome/Fibromyalgia Syndrome (CFS/FMS).
Because of problems defining chronic fatigue syndrome and fibromyalgia, I prefer to use the following definition: Continue reading →
I listened in horror to my voicemail. Somehow, it had recorded a conversation between my father and a friend of his. The incisions on my tummy had only just become painless in September 2005. But no longer. Apparently, my body couldn’t take listening to less than flattering words from my own parent.
Later his friend tried to justify my dad’s behavior. “Devin” had expressed anger because my father was nowhere to be found while his daughter prepared for, then underwent, major surgery. Father was only reacting to that anger. “At any point in all this, did he ask how I am?” I inquired. Silence. Continue reading →
“Casey’s” body language was not matching her words. He was my new, naturopathic doctor and she was saying things like he “just wanted to be sure” and that he wanted me to see someone who knew more about this. But it was Friday and she’d already made a Monday appointment for me to see another doctor. Plus, she was moving around the room with an urgency that made me suspicious.
“Just tell me,” I insisted. “I won’t hold you to it.” Clearly something was on his mind. Clearly she had an opinion on what this latest test result meant.
“It could mean liver or bone cancer.”
I looked at him uncomprehendingly. Then my mind did a quick calculation. Liver or bone? Aren’t those the worst places to get cancer? How did I get here? Again? Continue reading →
It was January 2007 and I was back in my surgeon’s office, having decided to investigate my condition myself. The plan was to find out whether there was a recurrence of what had led me to surgery in the first place. We’d already ruled out anemia and we now knew that my ultrasound results were great. So why was I still recovering after 16 months?
There was a new face in the mix. Dr. Nutis was doing a fellowship with Dr. Nezhat and had been observing our interaction. Now he’d asked the question that turned out to be pivotal.
“I’ve been preparing for this appointment since about 9am,” was my reply. It was 3 in the afternoon. Also, it had taken a few months for me to return for that day’s ultrasound test since showing up was an unpredictable process. My doctor’s appointments usually got cancelled a few times before I finally made it because on many days I didn’t have the wherewithal to drive anywhere. Continue reading →
I was sitting on the red sofa in my new living room when it dawned on me: I had tried everything I knew and everything every doctor I knew, knew. I still couldn’t function and didn’t even know what was wrong with me. It was mid to late 2006 and I had moved by lying down and saying yes or no while Kari organized and packed up my townhome. My joints were getting increasingly sore, my body was bloating like crazy and by the time I was sitting on the sofa pondering my situation, my left wrist was in a brace.
I was no slouch when it came to using diet and exercise to keep myself healthy. Over the years I had become accustomed to doctors marveling at my great cholesterol numbers for example. But my medical doctor at the time, whom I’ve been calling Addison, had proven unhelpful even harmful. My naturopathic doctor “Bailey” was more sympathetic but didn’t seem to have much more to offer. The conclusion I reached that day was that new information had to come in. There was information somewhere that could help me, and I was going to find it. Continue reading →
I wasn’t worried when the orderly tied my feet to the bottom of my hospital bed. It was September 2005 and I had just had major surgery. Someone had put the emergency buzzer next to my hand but I was soon yelling for the nurses (or trying to). I simply couldn’t command my hand to move the required inch to grab the buzzer. The solution was to put the buzzer in the palm of my hand with my fingers wrapped around it.
Now the sheets on the perfectly made bed were pushing my feet into an uncomfortable position and I couldn’t find the strength to move them. So the orderly righted them, then tied them down. I even laughed when hours later one of the surgeons tried to carry me out of bed to take a few steps and I’d forgotten about my feet being tied to the bed frame. Continue reading →