22 Jul Today and the last two years
Illness and the Photographer
You see, many things went wrong at the same time. People need (not necessarily in this order): Money, Love, Health and I suppose Hope is also a big one.
For some reason, all of these things went haywire around the time, no let’s be honest, exactly on my 65th birthday. My Crohn’s Colitis had flared. My print sales had petered out. While I was sick, I couldn’t work on my site, or marketing prints. I had to go into the Medicaid system with the rest of the poor people.
l’ll have my story and even a few photographs from those days. I’ll try and write it up using pseudonyms otherwise I’ll prob. get sued.
For some reason I didn’t become depressed tho I had every reason to be. I tend to be hopeful – maybe stupid – one door closes and another opens, and all that jazz.
Before I write more about the various thunderbolts tossed by the fates; and sometimes by myself. I have to say that this sort of more intimate writing feels much more natural in the blog than on social media. I’m still not sure why that is, but if you are still reading this, you haven’t had to flip through a million memes, and pictures. In fact all you had to do was decide you were interested in this period of the photographer’s life.
This blog was never meant to just show photos, not that there’s anything wrong with that; but to document to some extent the life behind the lens.
I’m too sleepy now to do justice to this subject, but I will return to it.
What Went Sour
The disease when it’s really out of control can also cause Lupus like symptoms, i.e. all sorts of aches and pains esp. in the joints. Since my mother died of complications of Lupus this was always a possibility in my head (tho nobody elses.
I was once so hunched over after a flare-up, that I could easily have played the bellringer for Notre Dame, or some cripple from the Life Of Brian.
I found an old walking stick, more of a staff really, and hobbled around the neighborhood with people saying here’s comes Moses. I never pictured Moses all twisted up, but there you have it. While I was in my hunchback mode, I got a call to do publicity shots for a poster of a pianist who would be at Carnegie Hall. We talked back and forth and I could see exactly what she needed. But I wasn’t sure how to meet her in Central Park by the Bow Bridge where she wanted the shoot to take place.
I got a cab to get me to the park (don’t try to get into a small cab when you’re all crumpled up. And then I hired one of those bike carts to get me right to the bridge. I took a bunch of valium so that hopefully I could stand somewhat erect and not scare the client.
For the most part the shoot went well, although l was a little out of it because of valium, and at one point while shooting here with the lake and west side skyline in background, while she pretended to be reading a musical score – I got dizzy and knocked a few pages of the musical score into the lake and we watched them float away. The floating music ended up in the final poster shot, in the background – poetic license- and somewhere, some night, it was up in the front of Carnegie Hall.
That was a few years back when my health took a turn for the worse. But I recovered. Found a different doctor. Figured out how a poor man could afford expensive biologics, and eventually ended up on Humira. I’ll tell you that story next if you’re still following along.
Humira Went Wrong because of a Broken Medical System
You see when I began taking it I was on Medicaid. That in itself is it’s own story. But for about six months I was injecting myself in the legs its this very expensive biologic that was being paid for by Medicaid. Then I had a big sale, and all of a sudden I had jumped over the Medicaid limit. So then I spent two months off Humira, working with the pharm. company to get their foundation to cover it. Eventually they did and I began on Humira again.
This time, it didn’t work. GI guy says that my body created anti-something or other’s, prob. antibodies to the Humira TNF blocker. Anyway, it wasn’t helping at all.
Add to this that most of this time I’ve been on a low dosage of Prednisone (at this point 10mg/day) which has it’s own side effects, tho I’ve been as high as 40 mg.
What this all leads to is that i found a wonderful medical social worker who is helping me.
Two days ago I had my first infusion of Entyvio. Took less than 45 minutes. But it’s supposed to take 4 – 5 months before it really kicks in.
So there’s a little background behind the pictures.