Where I've Been (Pt. 2)

Where I've Been (pt 1)

… The Infusion Center, a suite in the hospital where one would be infused, via a prick in a vein, connected to some tubes and a pump with various substances that best enter the body liquidly and slowly, a drip at a time. I have nothing better to do for the next 7 hours than jot this down, or perhaps fret about if I may need to go and sit on a toilet here, in this hospital, a place you’d think is sensitive to the needs of various compromised people, mobility compromised people like myself, but for some reason it is not! For some Water-Drip-280x219reason they, the hospital, built a lovely, brand new Infusion Center as recently as last year, but blew off thinking about the common requirements of many of those who visit the place. Like how far off the floor do we situate a toilet? People in wheelchairs need to use them, yes, and they have that covered. But what about ME? Mr. Skirblog. Not a thought about me? A person not in a wheelchair who cannot, under any self propelled or gymnastic circumstances, ever hope to rise from a low seat, toilet or otherwise, without the help of at least two capable and brave people?

For a good part of the day my lower GI has cooperated like a champ. It can be like that. It can know when you really can’t go, like in the middle of a meeting, interview, traffic stop, a performance, a tête-à-tête of some kind, and it can wait. Amazing really, and appreciated for sure. Sometimes however ... Other times no, it reads the situation as perfect for a go. You’re just sitting on a chair at an infusion center, a lot of liquid is entering your body. You are bored and not necessarily doing anything important so yeah, c’mon, let do this! And hence the fretting, wondering if I may be stuck on their lovely, new hospital can, in dishabille of course, and of course, helpless.

These days, in my life, I have a lot of ADA type requirements where before I had none. Curbs, steps, handrails, toilet seat heights, all now on my radar. Things you, or I, never thought about before: cracks in the pavement, divots in the grass, pebbles on the asphalt, and exact inches off the ground a toilet seat sits, now occupy my thoughts more than I would care to admit. If I am not focused on these things constantly and entirely, I may fall, or get stuck. And I have fallen, and been stuck many times. A fall IMG_7682almost guarantees my head cracks the ground, as I am unable to hold it up neckwise. There are technical reasons for this, which may be described later in various appendices and footnotes that will certainly be needed. I will crack my head on the ground and not be able to rise up again on my own. I will need at least two strong Samaritan type people who are hopefully nearby and willing to deadlift 240 pounds of your friend, the skirblog. Though I am happy to report that in every case of me hitting the deck, there have always been heroic fellow humans in the vicinity just waiting to spring into action. Always. Every time. Helping, springing, willing to help. Just knowing this gives me renewed hope for humanity when I am low. But being low, literally low on a low lying seat of some kind is far from good and causes me a fair amount of fretting.


Where I am

… at Magee “Woman’s” Hospital in Pgh, PA, in a barc-o-lounger type chair, to be infused with Gammagard, hung above me in a 1 liter plastic sac of human immunoglobulin (plus a hint of vanilla I believe) that will drip very slowly and intravenously into me over a 7 hour session, 2 days each month. Because I have polymyositis.

“polymyositis” - a rather sing-song-y name for an uncommon inflammatory muscle disease -- has made mobility in my life odd and increasingly difficult over the last 15+ years. It does a thing where it attacks healthy muscle tissues, usually in the trunk area of your body, and turns them into muscular versions of swiss cheese. Why it does this, nobody knows. How you end up getting it is also unknown. How to treat it is again a giant mystery.

But if you get one of these mystery immuno inflammatory diseases you’re going to want to be in Pittsburgh PA my friends, and not say, Northern or Southern California where I first learned I had I something, and where health care is dominated by the monolithic Kaiser Health System who could give a rat’s ass about your poly wolly doo what? And does whatever they want with little regard to the tiny annoying little patients who scurry around their hallways clutching papers and printouts. No, Kaiser may fuck you up before they help you, then fuck you up again. Wires

So I eventually dragged myself and my polymyocitis out to Pgh, PA, dominated as it is by the also monolithic UPMC Medical System but where they seem to want to do stuff more along the lines of helping people in their staggering agglomeration of hospitals and clinics, and where they were already studying the disease, and where they happily welcomed me into their monolithic arms.

Being infused is much like air travel. You sit in a chair for many hours, one that looks outwardly comfortable but is inwardly not comfortable at all, where you can’t get up and move around very easily without a bunch of awkward maneuvering, and where you try to patiently occupy yourself and not go insane for the duration. Infusion sitting is far from horrible, and in my case the worst it does is make me feel like yuck, the kind of yuck you feel smelling the outgassing plastics, microwaved food, and burnt coffee that you smell on an airplane. The potential benefits outweigh any yuck that may hover about. At this point dripping IVIG is the only thing medical science has come up with to address weird inflammation like Poly M. and it has had some positive results. IVIG aka Gammagard, is made out of human immunoglobulin which come from your blood plasma. That’s right, yours. Thank you, although shit, you should see how much a liter of it costs! Around $80,000 folks. (that’s what an insurance statement read, who knows what it really cost or who got any money for it.) I paid my deductible and let the globulins flow. So yes, your blood plasma is valuable and Signprecious and keep it coming is what I’m saying, cause we're experiencing sporadic turbulence in the cabin.

END OF P.1 - Next post: Getting Unstuck


Mark Rogie

wow. please know if you need someone to pick you up off the floor or wherever you may go and need help let me know.

Mary Ellen Ryan

Brave humans endure a lot, and you my friend are bravely human.
Thanks for reconnecting. We all need an infusion of being with you.

Ron Harrell

One more thing that might cheer you up.

Ron Harrell

Brother, if I could be there I would be helping you every single day. I know that thing of spending hours in an infusion chair with a needle in your hand (or arm), except without the added bonus of polymyositis, and knowing when your bladder has had enough. That alone is not fun.

Knowing the some of the multiple ways in which your life has been disrupted, or more accurately, maybe, upended, I know that the ‘burgh is where you need to be. But I wish I was closer. I’d be supporting all that I could of that 240 lbs. of Skirblog.

Laura Crary

I have missed you, and am sorry that you have to go through this wicked shit. But I am glad to see you back again, and hope that the treatments do some good.


Thanks very much for sharing this sad, worrying, yet vital information. Your courage and wit shine through as always. Love you Lee.

Diane Cecily

Oh, dear friend. You are so damn brave. And how well we who have struggled recognize these mobility issues. You are in a good place. One of the very best. Be angry. It's part of the fight. Sending you strong thoughts. You can do this. Diane Cecily


Thank you for writing this.

Kelvin MacAderm

Probably the first time I have not enjoyed reading your scribblings or skirblings.

Stephanie M. Vargo

We've been missing you! What an ordeal for you. Sending you lots of love and support. We are fortunate to be in Pittsburgh for medical care. Looking forward to reading more and finding out how you've been doing.

Eric Sandberg

I'm sorry to read this. Rather than pepper you with questions, I will look forward to the coming installments where they will likely be answered. Best wishes to you and a hope for your recovery.

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