Chronic Immune Thrombocytopenia

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The Oncology Ward In The Sky

Part 1 of 2 Summer 2020.

Biking west along side roads, I whiffed the hospital complex two blocks away. Industrial cleanser seeps through the black cotton mask. Lock up, walk the final 100 feet. First, disinfect hands. People cluster in an attempt to form a line and follow the signposted instructions. We’re all masked. Security guards mill about, and a nondescript hospital employee guides people where they need to go.

“Do you have an appointment? Where are you headed?”

Centre Intégré de Cancérologie, 14th floor, I’ve got a blood test today.

“Oh, you know you have a separate entrance and elevators right? Here, this way, come with me. By coming in through there, you won’t have to wander the entire hospital and touch stuff that’s “disinfected” even though no one really cleans it.”

Thank you, I say, and ponder the horror of that last statement as I disinfect my hands again though I haven’t touched anything and make my way to the Oncology-Elevators. Two of us are whisked up in a socially-distanced elevator ride. Maximum occupancy of 4, one person per floor-sticker. Upstairs I am greeted by a nurse who asks the usual symptom-probes. The nurse’s right hand brushes up against my palms as she leans in to spray sanitizer and disinfect me once more. I didn’t even press the elevator buttons. A volunteer in a polka-dot bow-tie walks me down the long waiting room to point out the blood work reception desk, which has not moved in the 6 months since I was last here. I was supposed to return sooner, but there’s a pandemic going on.

They’ve been working on adding a third even taller wing to the CHUM. In the waiting room I always look down at the progress. Almost done now. Not just another hole in the ground. I used to get my blood tests done at _Notre-Dame_, an old old hospital opened in 1880. The CHUM built in 2017 has another high capacity blood-draw clinic on the main floor of D-wing, but I’ve never sat there in that glass box within the heart of the skyscraper complex with no view outside for patients. No, for some reason I take the elevator to Oncology. Once though I stayed overnight at the Nouveau-CHUM in an ER hallway on a cot under fluorescents. It was mid-march of 2019. In the morning my managing haematologist was on duty and came to see me at bedside. I said I’m fine. He said _You’re not fine listen to these numbers we’ll up your dose of_ Revolade _and deliver intravenous iron also request an appointment with the gastroenterologist because surely if you’re this anaemic your stomach must be bleeding._ Alright then, I guess. As he discharges me, the doctor jokes about how nice the rooms are up on the 15th floor, as if hospitalization is the right thing to chuckle warmly about. I think he’s well-intentioned and has a good grasp of haematological medicine but I was glad to leave, go home, and spend a month in bed resting while the weather turned warm.

Out the 14th floor waiting-room window I see the sky, the city, beyond. Nearby another patient sits down and opens a book: The Most Beautiful Quebecois Poems. I glance back out and a small brown-speckled spider weaves its web across the glass. From where I’m standing it’s bigger than the construction workers, bigger than the pedestrians, almost the size of the police cruiser two intersections away. Waiting there, refusing to sit, I wonder what good all the poetry in the world will do this single arachnid spinning its home over the city of Montreal.

The blood craw clinic is a resolutely functional and hygienic space. Blood draws occur 7am-3pm M-F. Wait times are short for patients who get blood taken here up high. I ask a nurse how many blood tests a day they’re doing lately. “It depends, but a little over 100.”

We’re checking my auto-immune system, it’s been known to eat away at platelets. Platelets are essential clotting factors, and contribute to homeostasis. When platelets are particularly low, internal bleeding is a risk. When I’m experiencing an auto-immune flare, I get acutely aware of my skin’s surfaces and folds, distracted by specks of the outer world that brush up against it, feeling egg-albumin thin. The circulatory system is a series of veinous corridors, highways, canals, transit arteries carrying blood along. The lightest pressure might bruise and the lightest scrape might tear. So we test. Sharp metal insertion somewhere along the arm. Middling.

Immune Thrombocytopenia is the medical diagnosis of a bleeding disorder, and the primary symptoms are: bruising in excess of what one would’ve expected for the amount of trauma, or bruises that are totally unexplained. When my daily life is asymptomatic, t


The Oncology Ward In The Sky

Part 2 of 2 he blood work makes sure to rectify the notion that everything is normal, that I could possible be healthy, be healing. Platelet counts under the norm are my everyday and have been for 19 years. A normal human platelet count is written out as “150,000 to 450,000 platelets per microliter of blood,” and my counts in 2019 alone were between 9000 and 427’000. I wonder whether we’ll get to stop counting anytime soon?

Internal bleeding’s a slow dissolving of venous layers melding into a contiguous ocean of blood. Carefully mapped out roads falling into disarray as in-betweens flood. Microscopic terror as a shortage of platelets leads to tidal waves overcoming the sea walls under maintained, decimated by an overzealous team of white blood cells. If this shows up to the naked eye at all, it’s usually as ‘petechiae’; tiny red pinpoints in the skin, little red-blue dots along the arms, the legs, around the groin. Mini-bruises. Even invisible illness is subject to sight. Can we stop counting anytime soon? Of course not, gotta put the blood under a microscope and find out just how its balance turns out. Break it down into categories for testing, count out with frightening exactitude just how much of this that and whatever else my body happened to contain at 11:45am on august 25th, 2020. Does it matter? My haematologist’s job is precisely to make sense of the clinical minutiae contained within blood. A career devoted to breaking down the organism’s liquid into numbers and building it all back up the right way. So, logic takes a crack at making sense of our lifeblood, and I can’t help but laugh.



deeply annoyed #ImmuneThrombocytopenia

I have Medical PTSD related to #ITP ,I know that I should be relived and happy to be in my sixth year of remission when other are not, but the anniversary of my diagnosis is coming up and everything that I've worked to mask, is coming up again! worst of all is my memory pain... I don't know what to do! has anyone dealt with any of this?

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Does anyone have tips for #Traveling with #ChronicIllness ?

I’m flying cross country this coming June and I have no idea how I’m going to do things like, get through tsa in a wheelchair, sit for 4 1/2 straight, and get seating with my wheelchair... any tips would be super helpful!
#TravelTips #AirTravel #Travel #Fibromyalgia #RareBloodDisorder #AutoimmuneDisorder #ImmuneThrombocytopenia #MuscularDystrophy

See full photo

So today I found out I have a third spleen.

As if getting two removed wasn’t bad enough, I have another about the size of a grape. Lucky me! #ImmuneThrombocytopenia


Is Today Going To Be a Good Day?

It is Sunday afternoon & it has started to rain. Anybody who suffers from chronic pain will understand what it is like to hurt when the weather is cold, damp or both.
Diespite taking my painkillers I am going to have to take extra meds out with me just to get through what we are planning to do today & hope nobody thinks they’re anything illegal which I have been accused of in the past until i showed the tablet packet.
Do I like living with constant pain i certainly do not & yes there is days were I  am in tears because I hurt all over & meds aren’t helping.
Now to the root of the prom lem if my drs i the past had of followed up on the ANA indicators in my blood work they’d have found i had lupus (SLE) a lot sooner & they could’ve put me on the Hydroxychloroquine years ago yet because nobody did it has attacked all my body.
What does that mean? Well my liver & spleen started to attack my red blood platelets which was caused by my immune system, i had to have my bone marrow tested to see what exactly it was that i had as it turned out i had Immune Thrombocytopenia Purpura which saw my platelet levels at dangerously low counts the lowest i ever was 0.000 yes that correct.
Drs decided after this episode i needed to have spleen removed which left me with NO immune system.
The lupus has also caused osteoarthritis in all my joints my knees are affected the worse as I’ve already had my right knee replaced 3 years ago & now heading towards my left knee being replaced but until i lose weight which i am doing.
Now the hardest part of having SLE is the relapses which hit with no warning & they cause me to sleep for anywhere between 18-22 hours a day especially when i am ill, i can get sick within 20 minutes of the first symptoms.
Life is a constant battle of staying both alive & well which touch wood i am managing to do but i know one day it’ll kill me until then i keep fighting on.

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