No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

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No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

more grief and loss

Well, that’s the way it is.

The picture is from Lake Matinenda in Ontario.

tubing

The oxygen tubing follows me everywhere.

I have a large concentrator for inside the house. There is long green tubing that I plug into the pale tubing that goes to my nose.

When I go upstairs, it’s a bit complicated. I have to unplug the pale tubing and plug the upstairs long green tubing into the downstairs long green tubing and the other end into the pale tubing. Then untangle it and I can walk around upstairs and still breathe.

To go outside, I have small cannisters. Unplug from the big concentrator, plug into the small cannister, turn the concentrator off, turn the small cannister on. Get purse and whatever the heck else I am carrying. Try to remember if the small tank is close to empty. I am carrying an extra small tank in the car. I have to turn the tank off to change the respirator, then bleed the remaining pressure, then take the respirator off. Yesterday I put the respirator on upside down. The tank hissed at me like a terrifying snake. I have warning signs in my front and back windows now: do not smoke, oxygen in use.

I took care of a man in the hospital overnight once who HAD smoked on oxygen. The ER doc called me to admit him. “He lit his oxygen on fire with a cigarrette.” “And how bad is he?” “We need to monitor his lungs.” “IF HE HAS LUNG BURNS SHIP HIM TO SEATTLE, HELLO!!!” “Well,” says the ER doc, “Ok, he’s probably fine, just burned his nose. But I am not quite comfortable sending him home.” “Oh, well, then, geez. Okay, whatever.” Wimpy ER doc. I didn’t mind once he was honest. The patient admitted that he did not want to do THAT again and yes, his nose felt pretty burned.

No smoking at my house. I am not tempted to smoke ANYTHING. When I was twelve, I smoked pretzels with my cousins and sister. They do not stay lit well but we laughed a lot. It was really fun.

I don’t have enough green tubing for the basement. So there are monsters and I don’t go there any more. No, I can use one of the portable cannisters to start a load of laundry. I am supposed to only use the portable cannisters when I leave the house. Used one yesterday to go in the front yard and garden. Stomped the spade in, levered up the grass. Wait and breathe. Wait. Ok, stomp the spade in the next place. Wait and breathe. Wait.

I get more oxygen on Wednesdays. Tomorrow. If I BEHAVE then after a month, I will get a small concentrator that I can walk around with. Then I won’t have the bloody tubing tail. I am seriously looking forward to that. I still will have the tail some of the time because the concentrator will have charging and a battery life and AUGH MY OXYGEN RAN OUT WATCH OUT WORLD I AM HYPOXIC AND DANGEROUS!

I trip over the tubing and it gets tangled and I get caught on things and it yanks at my head. My dance skills and balance are way better right now ON oxygen than OFF it. I am not nearly as neurologically whacked out when I have the oxygen. Makes me wonder… I don’t feel nearly as much OCD/ADHD/oppositional defiant. Well, ok, the oppositional defiance is rather baseline for me.

Makes me impatient, but then, whatever. I will still get stuff done. You are only as disabled as you decide to be and this will barely slow me down. Hope I get off oxygen eventually, but that is not clear. With repeat infections your lungs can scar. Hope not. Time will tell.

And donate to something to get oxygen to India. I can hardly bear to look at the news about it. I felt so awful with just mild hypoxic, that went undiagnosed for 5 weeks. Dying of suffocation is not fun. Donate.