The Gatekeepers Den

My second appointment with Dr. Ghesquiere went just as oddly as the previous one. This time, I was in to talk about my blood infection (enterobater cloacae), which I was assured would be handled promptly and effectively. Of course this wasn’t much of a comfort, after I had been dismissed as ‘not having Lyme disease’ in a brief encounter with both partners of the Infectious Disease medical practice, the only one on the Island. It was deemed prudent to have my blood cultures retested, to make sure I was bacteria-free, so I could stop taking the Bactrim DS.

Dr. G reviewed my bloodwork, and was confused by my severe anemia and off counts. The obvious answer, that the tick-borne bacterium in my body was feeding off these cells was a little too obvious. Captain Confusion and Disinformation is hard at work.

I am shocked that doctors find it so useful to repeat very definitive tests over and over again, looking for things that are only explain a few of my symptoms (at best). My blood work, testing for Lupus, rheumatoid factor, vasculitus, connective tissue disorders, protein production (rule out cancer, bone marrow disorder, over production of proteins in immune system), which all came back negative, yet again. I am not sure whether this is the second to fourth time I have had these tests done. These are the popular string that doctors usually cling to when they see me. Its the old ‘oh-anything-but-Lyme’ strategy. If you test a patient for enough things, you could find something wrong (which is what they hope)…something to explain all of my straaaannngeee symptoms.

Perhaps it is just a perception, but the doctor seemed to be working very slowly. We only have about half an hour, so bothering to slowly explain all the things I don’t have, or asking the same questions again does not make sense to me. I get the impression he is stalling, trying to get through as little as possible with us in the short time we have, or perhaps I only think this because I know it to be true. I am detecting a pattern with this sort of doctor.

Dr. G’s wording throws us all, latching on to an expression and holding on for dear life. In our last appointment, the catch phrase du jour was, ‘I am obliged to tell you…’. Today, I am asked, directly, because I am now an adult, whether I would be willing to see an adult rheumatologist at the Arthritis Soceity (even though my rheumatoid factor is negative) and a physiatrist. He said if he was sitting in my shoes, these would be the places he would want to be, the doctors he would want to see. How infuriating, that the doctor I could use most of all is sitting in front of my, and smiling benignly and lying that any other doctor would, essentially, help. Except not his kind of medicine. I am feeling too sick to digest this odd appointment, so I shall put off more reflection until I can think without my brain throbbing

“What Now?”

I seem to be one of those patients who doctors give the “What now?” face to a lot. I feel like a burden to their ordered lives, with so many complaints and problems that they take up much more than the few lines given to express the  “reason for coming in”. My prescriptions list flows into the margins.

I have been feeling extra specially awful for nearly a fortnight. I had about 6 of the uber cold shaking episodes, which are incredibly painful and exhausting. Shaking is our bodies natural way of warming ourselves up, and is impossible to fight, just like you can’t hold your breath and suffocate yourself. My Lyme-aware doctor thinks that it could be a reaction from a glucose intolerance, which apparently affects many women with Lyme disease. It is not cool. A few days ago I took a 2 hour glucose test, which involves drinking a deathly sweet drink of 75 grams of glucose (ooh yes. I don’t know if I have ever drunk that much sugar in one day ever). Then, you sit still for 2 hours and don’t eat or drink (minimally…can’t go two hour without a drink…so dehydrated always!) and then they draw another phial of blood. There was a lot of blood drawn that day…3 needles in all. I had to have a blood culture done, which included 4 culture bottles (whoa!) taken from both of my arms. I was not down with the idea at all but it was important. Apparently, I have some kind of gram-negative bacteria in my blood. The walk-in doctor I went to see was of the opinion that that was that, and the reason for my chills and tiredness, and that 2 weeks of double-strength Bactrim would magically cure my symptoms, or at the very least clear up the blood infection. The results were a bit confusing…the lab made a mistake on the preliminary report, but the wording is odd. It sounds as though they are not convinced what is ailing me.

I can’t find a family doctor…none will accept me, or my mother for that matter. It is like stepping into a fantasy land; It’s the McCarthy period and we are blacklisted for suspected Lyme-ist ties; Big Brother is watching out for me though, thank goodness. I don’t know how they can even legally turn me down. But instead, I have to wait over an hour and a half in a walk-in doctors seating area for my 10 minutes with the white coated doctors who wear the stethoscope like a tie. I hope that when I become a doctor that I will start by listening to the patients, I mean really listening, and diagnose the whole problem. Now, if you go to your family doctor, only one issue can be addressed at a time, which is an absurd system, because many disease have multiple, complicated symptoms, and how could a doctor possibly fully comprehend which specialist to send you to if he only discusses one of your complaints, briefly? It is absurd!

It is disgusting how the medical establishment is repeatedly failing me in all areas. How could a previously healthy 15-year-old female slip through the cracks without even a backwards glace from the attending physician? Even when that patient was patiently fighting for her life, I still had to fight for their time and ear. I only wish I could get appointments with all the physicians who tried to pass me off to another useless doctor, and explain to them the truth, to shake them with its devastating power. To kindly describe to them in a condescending tone that I have learned by example so well, that there is an epidemic going on, which for some reason hasn’t passed through their gated walls and foot thick glass of the ivory tower where they reside, somewhere high up in the clouds, where the goings on of a creature as small as a tick are insignificant. And anyways, very few ticks apply for passports, so they can’t be coming into the country!?

To surgically open their eyes seems the next logical step.

Walk On.

When I was young, I never considered it, but I just assumed that the world would walk on forever, and nothing would change. That I could always walk down the local streets and laugh with friends and nothing would change. I figured that there are things in life that just can’t change, because they shouldn’t. I figured that will power alone could keep change at bay.

Of course, I was young. The world walked on, but took a new path, and it takes a new route through time every day. How can you keep up if you are not abreast of these changes?

Today I feel sick sick sick. Low. I could stare across the room blankly forever, happy to just be still and not think. A few of my blood counts are low, so we are stopping the drugs for a day, and then we’ll pick them back up after I’ve been tested again. Lucky me :P.

The days pass by in mostly the same ways. We go places, and occasionally see people, but I hope we can see more. I miss everyone so much. It’s tiring doing things, but I like it better than doing nothing…

The thoughts aren’t stringing together right today, the words not flowing off my tongue. I feel lethargic and heavy. Tomorrow it will be better, it always is.