Zebra's Child

Living With Common Variable Immune Deficiency and It's Autoimmune Friends

Tag: Health Condition

Snarls

Snarls © Zebra's Child

Snarls                   © Zebra’s Child

Hi Guys,

I know I haven’t been posting at all regularly, but I still can’t seem to get my pain levels consistently under control. I’ll have a few good-ish days and then, wham! The pain levels go up again. I can function and do what I need to do, which is what keeps me from going into the ER. I reserve that trip for times I truly can’t function. But the pain leaves me with little energy or interest in doing anything extra. I usually love to write, but there seems to be a lot going on that requires planning and decisions, added to tons of medical appointments. We’ve been back from the wonderful visit with one of our daughters, son-in-law, small grandson and very new granddaughter for 11 days, and for the first 8 days I commuted back and forth to Kaiser for five of those days. I say commuted because I have to allow at least an hour of commute time each way.  Sometimes the one way trip takes 30 minutes. Sometimes it takes 2 hours. What can I say? It’s LA. The trip all depends on the time of day, whether there’s been an accident, or there’s road work going on with a lane closed, or sometimes, I don’t know……….. the traffic simply seems to bunch up and then mysteriously clear. The physicists have a name for this phenomenon. I just call it unpleasantness. Luckily, for most of my appointments I need a driver, so I at least have a friend to talk to along the way.

The picture of the tree above looks a lot like part of me feels: caught in a seemingly endless snarl of traffic that is likely to be pretty similar today, tomorrow and the next day as I trace my way back and forth and back and forth to doctor’s appointments and hospital procedures. It also looks like the snarl of pain in my head that makes it difficult to see the green grass and pretty berries among the twisted tree roots. The roots are, after all, just trying to get a hold of a patch of earth that will support and nourish the tree as it tries to grow and even flourish, caught as it is between a sidewalk and a road, without enough real room to spread out. Add to that the fact that it’s watered only on the surface by timed sprinklers, rather than fed long, nourishing drinks of water that would encourage the roots to grow down, rather than sideways. It is doing the best it can, the tree. As are we all.

The View Through the Fence

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I’ve got to remember that the view through the fence is beautiful. But dagnabit! Some days I just hate the fence. The fact that the fence is there. That it interferes with the view. Some days the fence is just a fact of life and other days I think the fence is really ugly. Sometimes the fence has a gate I can pass through. Other days the gate is locked and I don’t have the key. And somedays I can’t even find the gate, and I can’t be sure that I will ever find it again.

The fence, of course, is my illness. This Common Variable Immune Deficiency that hems my life in, sometimes completely surrounding me with no way out. I will be hooked up to this IV machine for a day and a half every 3 weeks for the rest of my life, unless at some point a scientist figures out a way to perform gene therapy so that a surgeon can replace my defective gene. Which isn’t, in fact, science fiction. That therapy is on the horizon, but may not be actually fully developed and practical for decades. If ever. It all depends, as all things scientific do, on funding. That treatment would probably take the entire fence down, and I wold be able to live my life like a normal person. But in the decades of meantime…… there is this darn fence. And I really wish it wasn’t there.

I’m sitting here in the hospital hooked up to an IV, and will return at the crack of dawn tomorrow to be hooked up for the entire day. And then I will feel crappy for several days, and hopefully feel better along about Wednesday. I did super well in France, and even did well initially once I got back home, even though my infusion was 4 days late due to traveling. And then somehow, my immune system decided that it really didn’t want to work correctly, and I got a mild infection (which responded well to antibiotics, thank goodness), and I started not sleeping well, and………… Well, I just haven’t felt well for several days and I want to feel better.  I want to be able to do stuff. Like go to the grocery store, and take my dog for a long walk. With my camera. I want to be able to find a gate in the fence. One without a lock. One that i can push open and go back out into the world, and be able to see the view without looking through a chain link fence. Even though the view through the fence is beautiful.