Our Journey With Disability

As I alluded to in my first post, my partner and I are both disabled.  While we both have cerebral palsy, his has always been more severe than my own.  We have been battling for the past year against the as-yet-unexplained decline in his function.

Born with a mild case of hydrocephalus, I underwent surgery to place a shunt in my brain before I was four days old.  Two eye surgeries and a surgery on my Achilles tendon followed before I was three.  At five or six, I underwent a surgery to lengthen the catheter of my shunt in my abdomen, and at nine I underwent my last surgery to date.

On a Thursday morning in February, I noticed a lump on the side of my neck.  Cody got concerned, so we decided to go into the Urgent Care clinic.  They sent me to my neurologist who promptly ordered a CT scan and X-ray and referred me to the neurosurgeon who had done my shunt revision when I was a kid.  We were in his office that Monday.  Within five minutes, he said he wanted to place a second shunt that following Thursday, since the lump was likely cerebrospinal fluid from a fracture in the shunt catheter.  Obviously, that scared the hell out of me to the point that I had never been so terrified before in my life.  I elected not to undergo surgery immediately, and instead got a second opinion from another neurosurgeon.  The second doctor reassured me that as long as I was asymptomatic of shunt failure, undergoing the surgery was not necessary at this point.  I figure though that I may need the surgery in the next few years.

Cody and I first met in 2009 over the internet and he moved here to Green Bay in June of 2012 after our friendship morphed into a full-blown relationship.   Since then, I’ve been trying my best to help him overcome his abusive past and move forward both physically and mentally.

He was born significantly premature, and his cerebral palsy originated when they tried to wean him off the ventilator in the NICU.  His brain suffered hypoxic brain damage and as a result he has had to deal with CP his whole life.  His father and, indeed, almost his whole family is completely ignorant when it comes to how to treat someone with disabilities,  Thus he had to learn to appear as independent and as “normal” as possible to lessen the abuse as much as possible.  However, that got harder after a childhood surgery, after which he could no longer walk without the aid of crutches.

A physical therapist once described cerebral palsy to me as a semi-degenerative disease.  Not in the typical form such as MS or ALS, but more along the lines that your body will age faster.  Nobody told that to Cody’s body.  Since 2014, he has been steadily losing function.  It was difficult for him to walk by the time he got his wheelchair in July of 2014, and by October, we were concerned enough that we got him in to see a neurologist who did an MRI to rule out multiple sclerosis.  While Cody had a lesion, that was not enough to confirm a diagnosis of MS.

In the fall of 2014, he was diagnosed with gastroparesis, a condition where the stomach is somewhat paralyzed.  That came after weeks of him throwing up after eating anything solid and eventually progressed to him immediately regurgitating water.  A quick visit to the doctor and he was immediately admitted to the hospital.  He was dehydrated and it took about a day for him to start eating.  Now he has a somewhat restricted diet, though due to our economic situation he is not always able to follow.  He has not had to be hospitalized for that since.  In the last year or so we have started looking into options for a longer-term fix other than diet.  Our two primary options are a gastric pacemaker and a Roux-en-Y gastric bypass.  Cody is more wanting to go the gastric bypass route, since pacemakers do not last requiring future surgeries to replace the pacemaker.  Pacemakers also have higher chances of rejection and infection.  That had been scheduled for today, but had to be cancelled because I did not realize that the appointment was for 9:45 in the morning.  Neither of us are morning people, and we would have to get up at 7 to be able to make it there on time.  Something I never do if I can help it.

In Spring of 2016, his psychologist confirmed something I had suspected for some time, that Cody was on the autism spectrum.  This was, for us, a relief.  Cody knew he wasn’t awkward or weird, and I knew that we could find him support through local agencies, however, unlike some, neither of us ascribe to the “quiet hands” doctrine.  If Cody needs to “stim”, self-stimulation for those unfamiliar with the concept, as long as it’s not overly loud, I encourage him to do so.

We are trying to get him fitted for Knee-Ankle-Foot Orthotics and had went down to UW in Madison for an appointment with their Orthotics department.  That appointment was on a Friday, and the next week after that, we received a call that since they were out of our insurance network and there was one in network closer, that we would be required to go there.  So now, we are waiting to hear back from this new clinic to get this process restarted.  What is even more frustrating is we would be down in Madison in just a couple weeks had insurance just let us keep going.  Now, we are starting all over from scratch and have not even gotten in to see them.

Catching Trains

For a while when I was a kid, I had an HO-scale model railroad in the basement of our townhouse.  It never got past the stage of bare plywood and two-by-fours before my mom’s boyfriend at the time abruptly left, causing us to be unable to afford the rent.  She ended up having to sell the setup.

Ever since, I’ve wanted another layout, but will have to wait until I can get my own house one day.  Until then, I have to satisfy myself by railfanning my local area.  The most common area is the Canadian National mainline in downtown Green Bay.  I usually can catch a train at the crossing about a third of the time when I go to the store, since I generally try to time it for the afternoon when one of the trains is usually northbound for the Green Bay yard.

This summer, since I’ve made it a point to walk more to be able to lose some weight, I plan on walking down Broadway in hopes of catching more trains, and perhaps some of the rare foreign power that come to town.

In the meantime, here are some shots of Canadian National operations on the mainline through Downtown Green Bay that I’ve taken over the past few years.  These are all locomotives, but I do shoot quite a bit of rolling stock, primarily to see the interesting graffiti and weathering of the equipment.

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The Saga of the Powerchair

What a week.  I was all psyched up and ready to hammer down three separate issues for Cody in the span of seven days.  As the saying goes: no battle plan survives first contact with the enemy.

In late 2013 or early 2014, Cody started having difficulty walking, so we started the process of getting him a wheelchair.  That was a bit of a hard go, but thanks to an amazing specialist at the local DME store and a therapist who did not pull a single punch when it came to her assessment, he was in his chair just over two months after getting the assessment.  They pushed through to get him a lightweight TiLite wheelchair that he could push himself.  He cannot push the hospital clunkers at all, which is what they wanted to give him at first.  His evaluation for the manual chair was in May with an amazing therapist, and by mid-July he was in his chair, which was good timing as he soon lost the ability to walk by winter.

Cody had been talking about getting a powerchair since at least late 2015, but I figured if we went for it then, the lack of medically-substantiated evidence of his condition declining would end up with the insurance company either denying him a powerchair outright or putting him in one that would be wholly inadequate for his needs.

By summer of 2016, evidence had begun to mount, his core strength was deteriorating to the point that we began seriously looking into getting a powerchair.  It was complicated by the fact that our doctor had left the area months earlier and we were without a primary-care physician.  It took us until September to get a new primary-care physician.

By late autumn, we were ready to begin fighting toward the powerchair.  Operating under what I had understood to be policy of the insurance companies, I set out to get Cody’s TiLite retrofitted to be able to suit him for the eventual times that we would not be able to take the powerchair, such as on trips with family or friends using their vehicles.  That process led to our first pitfall.  In November, I contacted the dealer that had outfitted his chair to get it modified.  A few weeks later, when I sent an email to inquire about the status of the wheelchair, I was informed that the company had shut down their service and repair department.

We were then referred to a different company in Appleton, which was an absolute nightmare.  We had to restart the entire process and have them submit paperwork as if the chair was a new order. That was  The service and repair people had an annoying habit of answering the phone on speaker.  Thus, we’ve been waiting since at least February.  It took until the last week of March to get the modifications installed, however, the cheap foot straps broke within a few days, and we have been trying to get them to come back out and fix them, to no avail.

While having to fight this company, I called our first dealer to let them know I was not appreciative of the service we had received.  After the manager apologized, she mentioned the seating specialist we had worked with for the TiLite, a great guy named Bob, was working with the company again.  Hoping we could go with him again, we attempted to contact the Appleton dealer, but they ignored the demand  Because the company in Green Bay was short-staffed, they don’t currently outfit powerchairs, so Bob referred us to another guy by the name of Dan at a different company.

Now on our third company, we are working on having them add a chest harness, new cushion, and repairing his foot straps while working simultaneously on getting the ball rolling on the powerchair.  I could see the concerned look on Dan’s face that this needed to be a priority.

But wait, there’s more!

In 2015, our doctor at the time left the area to move to the East Coast.  It took us some time to find a doctor that was LGBTQ-friendly at locations we could go to independently on the bus.  We settled on our current GP, but were informed earlier this month that she too was going to be leaving, in her case to raise her children.  Now, I do not fault her for wanting to take time off, had my mother been able to do the same, I would probably be much better off than I am, but my mom wasn’t married to a doctor.  So inadvertently, we are left in a lurch.  We have been told that we must have the prescription for the powerchair and an order for an evaluation by a therapist signed by a provider and that the same provider must also sign the report generated as a result of the evaluation.  However, the powerchair prescription must be done at a face-to-face appointment.

I had called the doctor that I was going to be transferring to, but they said since Cody had never seen this doctor, he would need to come in as a new patient, which were booking out until October.  So I contacted another doctor, who was booking out to July for new patients.  So, there, we’re pretty much stuck between a rock and a hard place.  Finally, though, Tuesday, we went to speak with Dan.  That was good news for us, he told us that a physician’s assistant would be able to sign the paperwork that we would need to get the powerchair.  When I called our health network back to get an appointment with a PA, we were told that one would be available on April 20th.  However, a day later, they called back and said that due to what we were requesting, that we would need to see an MD, so I told them I wanted him seen by one in the next ten days.  We now have an appointment on the 27th to get the scripts.  By the first week in May, we should finally have the evaluation done and finished, only requiring the signature of the doctor to get through this first labyrinth.

I say first only because the insurance company may prove to be another one.  The American health insurance industry is somewhat known for not wanting to cover adequate powerchairs.  However, we have been in contact with the team of advocates at our HMO, and they have been surprisingly helpful.  They told us that we can do both the manual and powerchair at the same time and also pointed us to a program that can help Cody get additional services and equipment much easier than through the HMO system.  Aside from requiring us to start over with a different clinic for Cody’s orthotics after we had gone to UW in Madison, we’ve been somewhat happy with them.

 

 

Wildlife Sanctuary Walk

My best friend and I decided to head out to the Wildlife Sanctuary for a bit today.  He’s big on Pokemon Go, and I play it from time to time.  Mostly, though, I used it as an opportunity to bust out my camera and snap some photos of the animals.  I also wanted to use it as a way to scope out how to get my partner around in his wheelchair.  While there are paved walkways, there are quite a few unpaved areas that would be difficult for me to push him through.

For those of you who don’t know, the Bay Beach Wildlife Sanctuary is the second-largest wildlife rehabilitation center in the state of Wisconsin.  The 600-acre preserve has several trails and learning centers to educate the public on area wildlife.  Animals they take in that cannot be released back to the wild are put on display for the public.

I didn’t get as many high-quality shots as I had hoped, but we were only there less than two hours anyway.  I also don’t have a telephoto lens right now either, so these are not the greatest of shots.  Indeed, one I took of two wolves dragging a carcass across their habitat didn’t turn out at all.  The autofocus picked up the fence, not the animals.

For more information on the park, please visit the Bay Beach Wildlife Sanctuary website here.

Below is a slideshow of the best photos I was able to get this time.  A fawn, doe. bobcat, red fox, cougar, and one of the wolves.  There are more animals there, but some are not yet out for the summer, such as the otters.  Other animals are kept indoors year-round, and since we didn’t go into any of the buildings, I don’t have any pictures of them yet.

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Welcome to my Woofpress

First and foremost, who the hell is Colby?

Well, Colby is a pseudonym I use on the internet.  I’ll explain more on that in a while.  I’m disabled, born with a mild case of hydrocephalus which caused mild cerebral palsy that has required me to use at least one forearm crutch for the past six-plus years.  My partner for the past five years has cerebral palsy as well.  His is more severe than mine and our struggles the past few weeks have been what has caused me to want to start this blog.

Wisconsin born and raised, I feel a strong connection to my home state having lived here all my life and only being outside of the state for two weeks. We are an interesting and fun state, and I could not imagine being myself had I been born elsewhere.  My state pride runs deep and strong. Our culture and history are very interesting to say the least. My pride extends to our sports teams as well.   Being born in Green Bay, I have a natural connection to the Packers, I generally will watch every Packer game and have gone to several.

Now that you know a bit about me, here’s what this blog will be about:

In high school, I went through every Culinary Arts class offered in my school and loved every minute of that class.  It cultivated within me a love of cooking.  Living in a small apartment, I can’t do much in the way of cooking, but I am going to do what I can to post a recipe every now and then.  I have a broad range of tastes, and will sometimes dabble in some shortcut ingredients.

Disabled people face challenges other people don’t fathom, especially if they aspire to get into the workforce, but not enough disabled people share their experiences with the wider world, so it gets lost in the shuffle.  Disabled people are too often looked down upon by society in general.  I know, I’ve seen it firsthand directed at myself and my partner, one happened just a few weeks ago from another resident in my own building.

Aside from disability and my Badger State pride, I am also an amateur photographer.  Last December, my professional photographer uncle gave me his backup Canon 20D DSLR camera as a gift.  Learning the art of photography is something else I am going to share on this blog as well.  Eventually, I am aiming to buy a few other Canon cameras, a Vixia, and Canon Digital Rebel to allow me to begin doing digital videography as well.  Down the road, if I find that I really enjoy videography, I am definitely going to consider a Canon professional video camera.

In a few months, I will be going back to college, which will also be a part of this blog.  June or July is when I am hoping to take the Accuplacer, as I want to study up on the math covered in the test.  I will explain the situation behind it being “going back” in an upcoming post.  I am aiming to finish my Associate’s in Hotel and Restaurant Management to start and then possibly transferring to UW-Green Bay for my Bachelor’s in Business Administration.

I am politically involved somewhat.  Last year, I helped with political campaigns, and, while it will rarely be a focus of this blog, I will let it be known up front that I am not a fan of the current occupant of the White House at all.  While neither of the two eventual nominees were ideal, there were much more suitable candidates who did not secure their party’s nomination that I would have preferred to have won the nomination.

I’ll also be using this blog as a way to illustrate what challenges I have had to face, both imposed by my disability and self-imposed to serve as a cautionary tale to show younger folks what not to do.

Lastly, and the origin of my pseudonym: I am a furry.  Despite what you possibly have seen, the Furry Fandom is not filled with sex-crazed deviants looking to have wild orgies wearing animal costumes.  Well to be fair, most furries aren’t into that.  Yes, there are a lot of furries who are into it for the kink factor.  But by and large, I’d say that it’s a minority of people in the Fandom.  Many people fall into the broadest definition of the term “furry”.  In the broadest sense, if you like anthropomorphic animals, you’re a furry.  I, however, will be one of the furries that dresses up in a giant animal costume to have fun and entertain people.  I’ve hung around the Furry Fandom for some years now, but have only gone all-in starting around December of last year.  This blog will have a general furry spin to many of the posts.

I’ve tried to blog in the past, never really kept up the motivation for it.  I don’t really see my life as interesting.  When I spend most of my time in my apartment reading, writing, or chatting, doing a blog seems pointless.  However, I figure this would be a good time to start a blog up because my life has started to turn around and become somewhat interesting.