Being Scared

I don’t know what gave me this genius idea to document my demise. I guess me being an artist I have the need to tell the world about my disability and what could possibly go wrong,not that anybody reads these anyway. 

Today was quite interesting. I had to go to the hospital to pick up more film for the doctors in Dallas to see. As usual I sounded like a robot when I spoke. I was talking to somebody whose son happened to have Spinabifita similar to mine. He said when his son has pressure headaches he presses his hand on top of his head to relieve the pressure so I tried it and it actually worked and I temporally stopped talking like a robot. 

Once again as I was unlocking my door it took awhile for my brain to send the signal to unlock the door. It felt odd to stand there and wait for the signal. I wish I wasn’t going through this. I wish the doctors were better informed back in 1970 when it was installed. I wish they would have told my mom to have it replaced when I turned 20 and not 47. I wish there was somebody here to help me,hold me and tell me everything is going to be okay. 

As I was doing more research. I was getting scared and I literally started crying. 

It is over whelming of  all the information on a ventriculo peritoneal shunt and what could possibly happened if a replacement doesn’t work. Blindness, pressure headaches, seizures and even the inevitable. 

I am mentally preparing myself for the process of a replacement. I am doing everything I can physically do before my trip to Dallas. So I’m cleaning up and cleaning out my apartment. I am taking care of business.

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Vp shunt: stress and anxiety

Today was a good day… I guess. The headaches weren’t as strong or bad as they usual. I didn’t sleep as much and I actually ate without feeling nauseous. Loud sounds and other such distractions intensify the pain of my headache. I went outside for a bit to see if I could handle it. It was hot. It was okay. I’m trying to keep my stress level down. I really need to stay off the Facebook. That has a lot of stressful information. I’m going to try to go out tomorrow for a bit to get out of my confines. Let see how I do. 

Vp shunt replaced. 

I’m going blind. I really am and it’s because my VP shunt is finally failing. After having it in for 47 years with no problems its finally had it. I knew it was causing me problems when I started getting headaches and blurry eye sight. For those of you who don’t read my blog. A vp shunt (ventriculo peritoneal) shunt is controls my hydrocephalus; an over production of the cerebral liquid.

My speech is slurred at times and I lose my train of thought. l’m exhausted all the time, I have a hard time keeping my eyes open and I’m going blind but I’m not allowed to go to the emergency room until I’m completely blind or I feel faint.

In the next couple of weeks I will be taking several trips to the DFW until my surgery because there are no VP shunt specialist here in this rinky-dink town I call home.I will also be doing a lot of drawing and painting just in case something happens. I will have left my mark on the world. I’m not scared. I can’t wait. I will be rid of the headaches for good. But until then I just sit and wait.

Massive headaches

I was painting a demo for my friend whom I started to teach how to paint when I got this huge massive headache. I think my vp shunt has finally had it.  You see folks I have a verticular peretenal installing (VP shunt) to keep my hydrocephalus in control. What is hydrocephalus? It’s an over production of the cerebral liquid that surrounds the brain.

My mom has always informed me of what my happened if it were to clog or need replacing. She said I would have massive headaches and start to go blind. Well guess what folks? I think it’s happening. I started getting these massive headaches and I started wearing my glasses more often. My energy is gradually being drained. I may have to have it replaced or adjusted. It was a good run this VP shunt of mine and if something happens, I’m not scared. I think I’m ready to go.

Access Denied

I was denied medical treatment today not because I wasn’t insured; I have insurance. I’m over insured. I was denied treatment over a piece of plastic that was manufactured back in 1970. 

You see folks, I have what is called a ventriculo perotaneal shunt installation (VP shunt) which prevents hydrocephalus from happening. I have an over production of cerebral fluid. Everybody has cerebral fluid the brain floats in. If we didn’t we all would give ourselves concussions every time we moved our head.

My VP shunt goes around my skull, down my neck and right shoulder draining through my kidneys. But what I didn’t know was there are several kinds of shunts.

Route Location of Fluid Drain
Ventriculo-peritoneal shunt (VP shunt) Peritoneal cavity
Ventriculo-atrial shunt (VA shunt) Right atrium of the heart
Ventriculo-pleural shunt (VPL shunt) Pleural cavity
Ventriculo-cisternal shunt (VC shunt) Cisterna magna

I may possibly have a sublaxation- a partial dislocation -on the left shoulder, so I’ve been in a sling for 2 weeks now, not really being able to maneuver my wheelchair by myself. I’ve had a lot a help since then.

I was sent to the hospital to get an MRI to verify my diagnosis. I arrived 45 minutes early to check in. I went through the paper work which everything was approved and ready to go. As I was waiting for my turn a crude,tall,lanky nurse comes out to ask me about my VP shunt.

She gives me a stern look and without a simple hello or pleasant introduction she looks down at me and says. “it says here you have a shunt, What kind is it?” I say a “vp” and then she says “what is it made of?” “Is it programmable?” “When was the last time you had it checked?” I give her a perplexing look and then I say “I don’t know, plastic? And then I say “It was installed in 1970. The year I was born; in Galveston, TX.” And she gives me this “fuck you”look and continues with her interrogation. “Who installed it?” “When was the last time you had it checked?” And I say “never.It’s made of plastic. It doesn’t need to be checked or replaced.” Then she asks me in her crude tone “Is it programmable?” Do you have it programmed?” And I say once again, “NO, IT’S MADE OF PLASTIC!” Which in reality I didn’t know because it’s been there for so long.

After she drills me about my shunt. She informs me the doctor needs to know the material it’s made of because it’s a safety issue. 

She goes back to discuss with the doctor what I had conveyed meanwhile I make a frantic phone call to my mom about my shunt because she would have this information but to no avail was my phone call a success. 

The nurse returns and says with her crude tone “we’re going to need an X-ray of your head.”  and so I was taken back to one of the rooms and had my head X-rated. When that was done I was taken back to the waiting room.

And so I sit and wait to see if I will have an MRI done today. 

Guess what happened! That’s right folks, the nurse comes back only to tell me it’s against hospital policy to give patients like me MRI’s because it’s a safety concern. Since they don’t know or can’t tell in the X-ray what my vp shunt is made of; they can’t risk it. “If something were to happen, it would be on us.” She says. I’ve had MRIs done before just not here. She repeats herself which is making both of us very irritated and continues to say, “You could talk to the doctor yourself if you want but he’s just going to tell you the same thing.”  By this point in time I was already extremely angry; answering her politely and generically so not to explode in front of her and without an apology or a “Have a good afternoon” this ill mannered woman turns and walks away.

So you can imagine my fury this afternoon as I head out the door. An entire afternoon wasted. My VP shunt has never been a problem until now. So the next time I go for an X-ray, MRI or any similar procedure I’m going to have to carry information about it.

Two good thing came out of this little venture. I’ve learned there’s more than one kind of shunt and I’m going to have to do some research so this will never happen again.