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.

VP Shunt malfunction

https://goo.gl/images/yCuOCn

In the past 5 days my health has been declining. My sight has slowly becoming blurry, I’m both mentally and physicslly exhausted. I sleep alot. I have to set alarms to wake up so I won’t lapse into coma, I’m losing my appetite and I’m struggling to think,concetrate or even performing basic everyday tasks. Even writing this post is a challenge. I get vp shunt pressure headaches and they get worse when I’m under a lot of stress or anxiety. 

I have a doctor’s appointment set for 2  weeks from Thursday in Dallas, TX so I’m hoping and praying that I qualify for a replacement (I’ve had mine since 1970.) Or at least an adjustment. 

If you would like to know more about a  Ventriculoperotaneal shunt (VP shunt) I’ve included a link on the top of this entry.

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.

Natural Assumptions

I’m in a wheelchair. It’s a 2015 Litestream FX deep purple sports chair. It’s customized to my physical needs and specifications. It has removable leg peddles and arm rests with a crutch rack so I may carry my crutches if I plan on walking a certain day. It also has a seat cushion that, believe it or not,serves as a floatation device if I fall or decide to take it into a swimming pool.

So why am I telling you about my wheelchair?  Well about a couple of days ago I was sitting outside enjoying the odd summer temperature, in the middle of winter, that we have here in the Texas Panhandle when a gentleman in a bicycle rides up to me and starts preaching.  

He introduces himself and then rambles on about how he is Christian and how God had sent him to talk to me. He was talking really fast so I could barely understand what he was saying. Then I heard him say something about me being homeless and I say. “Hold on there Hoss I’m not homeless. I live here.” and I point to my apartment.  And he says “What!” I repeat myself but this time with a very irritated tone. “I live here and I have a JOB! I come outside to get some air and use the WIFI!”  And he looks at me and says “WOW, Don’t I feel like a douche right now, …And you have job; that’s more than me. I don’t even have that!”  He apologizes for his assumption, bids me good day and rides off into the sunset. 

…And the moral of the story is don’t assume someone is homeless just because they happened to be in a wheelchair.   

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.

Arm in a sling

I went to the doctor today and he put me in a sling for a week or until I find out if my shoulder is torn. I don’t know how I’m going to function since my wheelchair is manual, but to be fair, I only have to wear it at home and at work when I’m stationary which is for 30 minutes at least.

It’s been cold and snowing lately here in the panhandle which makes it really hard to go around in a wheelchair.

Over the Christmas break it snowed one weekend and I was trapped in my apt. until the snow melted a little. Well, when it did I took the first chance to try getting out of my apt. 

The day I did make the  attempt, my ramp was still covered in snow so I grabbed my dust pan and started shoveling myself out. As I was digging I started slipping much like a car would in ice or snow, that’s why I hate it so much. I grabbed onto the rail to try to stop myself but with no success and in the process almost took my thumb off. 

As I had finally made out of my confined space (I actually made it pretty far) one of my neighbors saw me and was wondering what I was doing out in such freezing weather and with so much snow on the ground. I explained to her my situation. We both laughed and she kindly helped me get my mail and then back to my apt. She then says if I needed anything to call her; there was no need for me to be outside. I laughed and said thank you. She went on her merry way and I stayed inside for the rest of the day. It was way too cold for me to be outside anyway.

Who goes where.

I recently had to go to physical therapy for a shoulder I had hurt when I fell out of my wheelchair. I won’t go into much detail because that’s not the point of this story. As I rolled in to the Physical Therapy Facility  I had to go use the facilities so I checked in and the nice receptionist directed me to the nearest bathroom. As I “walk ” in I immediately go to the handicap stall and was instantly shocked at how small it was. As you can see my wheelchair didn’t even fit so I had to get out of my chair walk into the stall. It looks like the only modification that were made was side hand rails.

I hear people getting outraged about who goes into what restroom. “And why is that man going into that bathroom?”

To be perfectly honest it doesn’t really matter to me who does what in where. As long as I can fit in a restroom stall comfortable to where the only transfer I have to make is from my chair to the toilet and then back to the chair. 

So the next time you start to complain or get outraged over who has the right to go into designated restroom think about how small some handicap stalls are.

No wheelchair For Me

About 2 Thursdays ago. I had to go to work without my wheelchair. It was a very exhausting day.

See, I don’t drive yet because in the town I live in, there are very little practical services for the disabled. There are no driving schools for the physically disabled here. I could go to a bigger city but there would have to be a huge improvement in my finances but that’s another story. 

There’s a shuttle service here in the town I live in that takes the disabled anywhere they want so long as it’s within the city limits. It’s expensive but well worth it because, it’s exclusive to the physically and  mentally disabled and elderly as long as they can prove they have a disability. The shuttles are clean, it has heating/ a.c., the drivers are respectful and polite, it’s  at your door and it’s by appointment only. 

So about 2 weeks ago I ended up going to work without a wheelchair because my shuttle forgot to schedule me in

Manners

It is not cool to ask a physically disabled person what happened to them when first meeting. I realized this not too long ago when I was out and about with one of my girlfriends.

A friend of mine has been feeling a little depressed since she lost her job. So  one day I call her and invite her out for drinks and maybe see a live band in great hopes of cheering her up. 

She comes over, we talk a little as I finish getting ready for our evening. 

It’s about 9:45 pm. We drive around for a bit. We first stopped at the local biker rock bar, which happens to be one of my favorite places to hang out. There was a band playing that night which I really wanted to see but unfortunately she didn’t want to be in a smoked filled place with a bunch of loud bikers. So we drove around once more until we were in the downtown area. I suggested we go to a wine bar and just sit, talk and listen to the acoustic musician  playing while we drank wine. She agreed and  parked her car in whatever spot was available at that moment which was close to the cute little wine bar at the corner of the downtown area. 

As we get out of her car we here a rock band playing in the distance. So we follow the sound which lead to a swanky, yuppie bar close to one of the main buildings in the area. They were young college students from Wisconsin. I didn’t get the name of the band but they were really good. They played original music, classic rock and even a little early 90’s music with their personal touch. It was quite pleasant. It was an outdoors concert. The weather was quite pleasant for such an ocassion with the exception of a slight windy chill in the air.

There were table and chairs set up outside of a local bar. I think the band was playing for a while now because there was a good size crowd going. 

The tables and chairs were already full so my friend grabbed a couple of empty chairs and set them aside where we could enjoy the music but still away from the crowd. She got a couple of glasses of wine while I settled in my spot. 

The band was playing one of my favorite songs but I didn’t recognize it until the chorus. They had butchered it. But in my great disappointment of how they had treated my song I look up and notice my friend was emotional. I ask her if she was okay and she says yes and tells me she needs water. A waiter had passed by to ask her if she was okay and begins to comfort her. I think he was just being flirty because she was leaning on him. As I was trying to figure out what song the band was playing the waiter looks at me and instead of making me feel welcomed and asking me if I would like anything He looks at my fore arm crutches and AFOs(ankle/ foot orthos )and gestures with a finger and a wave  and asks “What happened to you?” “What’s going on with you?” “Why are you like that?” and  I look up at him trying to process his questions and then I say back to him. “The band is playing my song.” And he answers  “ohh.” and then he walks away without taking my order.

Now I’m okay with questions. Ask away, it’s the only way to get good, vital information without being offensive. But please don’t let that be the first thing out of your mouth when approaching a physically disabled person. Do not let the physical disability be the focus of what could possibly be a pleasant conversation. 

My disability is not the main aspect of my life. I am trying to get away from all that entails as a person with a disability. I have a lot of obstacles to hurdle on a daily bases which are stressful.I live in a world that can sometimes be very handicapped unfriendly. I am not going to start giving a total stranger information about my disability while on a relaxing outting (unless my life is in danger then we’ll talk). 

Ask me about my favorite song, my favorite metal band, my art work, book, author…I am more than happy to answer any questions about my disability anytime but not while I’m trying to have a good time. Let’s be friends before asking me questions and maybe I’ll fill in the blanks.

Stay focused and don’t stare, That’s rude too.

Don’t do this!

    I’m on vacation and can’t really afford to travel right now so I sit at home and sort of wait for things to fall on my lap.
    I should really be drawing and painting or doing some other important things but I don’t.
     I’ve gotten into the habit of journaling my thoughts; may be even writing a story or two.What matters to me right now is getting stuff out of my system; but I digress.
     I started writing. I’ve been writing in my apt. but sometimes it feels lonely and alienating. I started going to the local music/book store/coffee shop franchise that’s across the street from where I live. Well, it’s not really across the street. I have to go across a street, cross a shopping center parking lot and then cross another main street to get to my destination.
     Yesterday I suffered a “traumatic” experience.
I’m in a wheelchair but that doesn’t keep me from living life. When people see a wheelchair they automatically assume the person in the chair needs help.
I was “walking” over to the coffee shop and I reach a traffic light to cross the street. I waited for it to change when I noticed another person also waiting for it. He was coming and I was going. As we crossed the street at the same time he panicked, I did not. I was waiting for him to start crossing the street so I too may be able to cross safely. He wanted to stop traffic and help me cross the street while I was already in motion. He came at me from behind and tried to grab on to my chair at full speed. In his attempt to help me; we almost caused an accident. I yelled at him to “get away from me” because, One; I have a social – anxiety disorder if you come up behind me it will trigger a panic attack and two; I have excellent upper body strength. I “run” everyday to keep myself going. I really didn’t need help; especially on a very busy main road.
    When I reached my destination. I was shaking and crying. I contacted my brother because he’s the one that usually calms me down when things like this happen.
    We spoke for a while. He told me to take deep breathes and to be more vigilant next time.
We “hung up” and I felt a lot better.
    I’m sure that man was calling me every name in the book because I did what I did. But let me tell you the only ones allowed to grab my wheelchair, to even touch my chair, especially at full speed, are my family and my best friends and  that’s because they know me already and they’ve done it before. They know how to safely stop my chair without throwing me out it. The way that man had grabbed on to my chair he would’ve thrown me out as soon as he got me across. When total strangers try to push me;it slows me down and throws my rhythm off. That’s why I rather not take the help
    It makes me happy and proud to know that I can control my own wheelchair. I’ve been able to do it since I was a child.
    I will always appreciate help especially when I actually need it. But please, please don’t try to help without permission. It could be intrusive or possibly turn into a dangerous situation. One never knows if assistance is actually required or if one is just being nice.