Updates and Additions

I have been very busy, but not too busy to write. Just a lack of desire to actually type and rehash bullshit.

Decided to get this shit down to keep things somewhat up to date. Memory requires jogging and the blog reminds me of the good and bad of past.

Starting with a couple goods... I eventually got signed up on a financial assistance plan with Biogen. I had to get another starter of Tecfidera that holds my doctor's titration schedule of 120mg once a day for two weeks, then 120mg twice a day two weeks. If we wanted the normal dose, my doctor would have to redo paperwork. 

Completed a second starter dose, two months in a row. When I was getting low, I called Biogen to get second shipment sent and of course they couldn't find the order or my enrollment in program. 

After nearly an hour on the phone, and expressing my displeasure of having to taking the starter for a third month in a row, they got things pushed through. Told me I would expect a call in a few days.. did not receive that call, I called almost a week later as I was two days left of medication, they jumped on it and overnighted the medication. Shouldn't have been this much trouble. 

While I can tell definite GI issues if I don't eat when taking the medication, I cannot find a rhythm to the flushing. Some days its not so bad and others, I want to take my skin off with a razor.

A couple nights ago, flushing hit and I was on fire. I sat up in bed trying to put my mind elsewhere but I couldn't. I got so frustrated I ripped my shirt off like a fucking baby. Pissed me off that I ruined a perfectly good shirt. 

The flushing makes my skin dark red, and it feels hot. Feels like needles from head to toe... When it hits hard, I tell myself I am going to quit but I keep taking it. Its supposed to ease up over time. Well hurry the fuck up. I have been trying to remember not to take it too late. Flushing seems magnified when I am trying to sleep.

Another good thing is we got a pet. Its a cat, and shes been with us for almost two months.

While visiting the girlfriend's parents there was some kids walking around holding a kitten by it's neck.

I yelled at these kids a couple times when I would see them carrying it like that, telling them how to hold her.

Anytime the kitten got loose, she would run across the street to us and was very loving. Poor thing was malnourished and covered in fleas.

We decided we would rescue this cat, but by the time we decided on that, one of the kids had rounded her back up and locked her in their house. We did not see her for the last two days of the trip there.

Two weeks later, gf's mom called, said the kitten was loose and came to her. It was still in bad shape and covered in fleas. We said we will take her, and she was taken inside and cared for.

A couple days later my gf traveled a few hundred miles and got her. They took her to vet to get checked and shots before bringing her home..

She has since regrown hair in places it was missing and is steadily putting on weight. She has been to vet here and up to date on shots. She is underweight still and has to put on more before getting fixed but is getting there.

I am not a cat person, but this cat is very sweet. She sleeps through the night and does not bother us. She loves to sleep on or by me while I work. Girlfriend is slightly jealous of the relationship which was inevitable since I work from home. She is an indoor/outdoor cat. She likes to go outside with us and come back in with us. She was litter box trained before she got here and she doesn't like wet food.. odd. She loves the sound of dripping water, its mesmerizing to her, but cannot stand to get wet.

Alright, now some bullshit. I requested a recommendation for an eye doctor from my neurologist since the ON has lasted 8 months now and needs to be documented. I went to a neuro-ophthalmologist that was recommended.

Ran through several tests, and completed a field test. He was able to confirm the ON in the right eye, but said the ON had actually affected both eyes. The retina in left eye is pale and field tests show its deficiencies. I suspected issues with the left eye but ignored them concentrating on the obvious issues with right...

He confirmed that there is nothing that can be done and expected that I may have issues with this forever since the inflammation has lasted this long....great.

I am still unable to find someone in my area where I can get my shit. My only consistent and reliable dude is in another state and requires a couple hour drive each way.. I am having trouble socializing with these people here. I have little to nothing in common with them. The couple people my age with MS I have met here don't and have never smoked. Both are very religious.. 

I have had my eye on some groups that meet up here but always miss them for one reason or another.

I was going to try my luck with a meditation group, an atheist group, and an IT/Sysadmin group. 

Don't care to socialize with these people but I am on a mission. 

My lease is up in a couple months.. trying to decide on moving to another part of this area or go ahead and just fucking leave. Hate this area, the people, the way of life, every single fucking thing about it. Can I find happiness somewhere? Can I shut the fuck up, suck it up and deal with it? I am seeking the unattainable. 

I have been prepping paperwork and information to apply for disability. I was going to make an appointment with local SS field office but dipshits in DC are fucking me on that.. 

Hopefully they get their shit together before long so I can get the ball rolling.

I have managed to work through all the troubles so far but this bout of ON is really making work difficult.  

Seems like everything now is just a waiting game.. 

I know I am forgetting something. Oh well, till next time.

Update 8/9

Thanks to Sherri writing about her recent enrollment in a new patience assistance from Biogen, I was able to call them, and after 30+mins they located the program and found that I qualified. I will get to bypass my insurance and receive Tecfidera for free.

Made another run to old town for cannabis.
(which is already getting way too fucking old...I shouldn't have to spend four fucking hours in the car in one fucking day for some fucking pot...fucking ridiculous.. I can only find shit here.)
I called my old Psychologist a few days before the trip and made an appointment with her.
She was pleasantly surprised to see or hear from me. Last time I saw her, she asked me not to disappear on her, and I said I wouldn't.. well I did just that. I didn't see her before a I moved. Been over a year or more since she had heard from me.

We updated records and some of the significant bullshit. It was a good visit. Didn't make any sort of impact. She pushed multiple times that I need a dog. I know this. There are things that have to be worked out. I live on a mountain with little to no room for a dog to do their business. I expect to be moved soon and a proper yard will be priority.
She has two dogs that are trained service dogs and they were both all over me. It was nice to get that attention and unconditional affection. They were getting on the couch with me, each trying to fight for attention.
For a service dog, they were apparently misbehaving this way which led to another verbal push for a dog.

This..... this was upsetting on multiple fronts. It was upsetting to see someone suffering like that. It was upsetting to see someone with MS suffering like that. It was upsetting that she has no decision in her fate.
She wants assisted suicide so they can harvest her organs. How can an animal get put down because its too ill and healing is 'not cost effective' or there is not enough room in a shelter? We can kill a living animal without a second thought. But a human... well, make that thing live regardless if it wants to or not.
I will not live like that for a moment... I will drown, cut, electrocute before I ever live die in that situation.
I simply will not require assistance. I want to write my own ending.

Humans are profitable. Doesn't matter in what shape. Healthy and sick humans are consumers either way. You must be alive to buy new gadgets, entertainment, medications, real estate etc..
Every one of us have some function in keeping the wheels greased for them.

Update 7/16

About three weeks ago I took a ride with the girlfriend to our old town to catch up with a friend and pick up some cannabis.
It's supposed to only be a 2 hour ride but an accident on the highway had us stopped at one point for 3 hours. People were out of their vehicles walking around and having conversations. Took five hours total just to make it there. Only took the normal two hours back...
I was on-call that weekend and it started in the evening so I had little time to visit.
Going back in a couple weeks, hopefully with no bullshit.

Not sure if it was the heat or the stress, but the ordeal put me in a pseudo-exacerbation. Left leg has gone from spotty numbness to being completely numb and back is hit with spasticity locking it up.
I am also having pains in my right leg now that I can only describe as neuropathic pain. It hits around the shin and knee, spreading out from there.
My ability to walk has gotten even worse. I can only walk a little bit at a time before legs are too tired to continue. Getting a walker this week... wheelchair seems inevitable since I can barely stand with assistance. I am just too stubborn.

Last week my neurologist spoke at a MS dinner and I got to see him afterwards. He thinks it could be a full blown exacerbation. He was due in his office a couple days later. I spoke with his nurse about it the next day. Have not receive a follow up call yet.

When I called the specialty pharmacy to get my second month of Tecfidera shipped, they informed me that insurance had denied the full prescription.
My insurance wants to me to have tried Avonex, Capaxone, and Rebif first. I have already been on Rebif and I wont go on injectables again. We started the appeals process. My doctor was going to send a letter of medical necessity stating that I have the needle phobia and require oral medication.

I was told on Friday that my last great-grandmother who lives a few states away was going to be in a state near by for a week. She was diagnosed with cancer and was given a couple months to live. She is 96 years old.
I was on call over the weekend but on Sunday I woke at 5am and my eyes wouldn't close. I got up, took a shower and hit the road. I was not able to travel there any other time in the upcoming week.
Drove for four hours, got to visit for four hours and back on the road again another four hours back home just before sundown (blurriness in eye makes it harder to drive at night).
My left leg had gotten so numb that I kept double checking its position to make sure foot wouldn't get in the way.
I couldn't get home soon enough.... but I am glad I made the trip. Got to see a newborn cousin while I was there.
Saw the oldest and the newest members of the family... no doubt in my mind that I have taken family for granted. I felt like I had missed a lot while visiting.

So it is...

Each exacerbation takes a piece of me away that I never get back. A body that was once unstoppable, unshaken and ready for the world is ravaged by this disease and left deteriorating without grace.

It's difficult for me to argue that I have not given up since I really don't feel as that I have. But in the eyes of a normal, healthy person I cannot do enough. They make it sound so easy. Just do this and just do that.
They don't understand that walks across the house are marathons anymore. How working makes me feel mentally incompetent any more. Heat outdoors keeps me imprisoned. Spasticity and the related pain refuse to allow a decent rest.
When I am alone, some meals are skipped because of the effort and appetite involved, for I have trouble with both.

Sometimes I wonder if I am being punished for not following my heart as a teenager. Before my Dad had a stroke (leading to me dropping out of school to help the family), I had dreams of seeing this world. I wanted to live a free nomadic life, flowing and changing course with the wind. Chase the seasons and get chased by them. To hitch hike, train jump, bum my way to and from. To meet people and make an adventure of life.
But I fucked up. I got on the fucking wheel. I got on the fucking wheel like a fucking rat and never got off.
I could have jumped earlier but I felt like I would be abandoning my family.
I was watching the ground building the courage to jump, and then...
I jumped, and missed my mark. I waited too fucking long and it found me.....
MS kicked the door down and fucked me. This sorry piece of shit has not left since. It lurks around, randomly pulling me down and fucking me. It'll fuck me anytime it wants it. Anytime it feels like I may be getting my hopes up for a change, it fucks and it fucks. It's fucking relentless..

Its making me a little jealous and bitter. Somewhere, someone is living my life. They have the wind in their face with fresh air in their lungs. Wonders in their dreams and life in their eyes. An uncontrollable smile and laughter that can be heard a mile away.

I find myself in a similar conundrum. At a crossroads, I don't want to abandon my family but I am tempted to follow my own lead and not miss this time.
The suffering has turned me into an old man only waiting for the fucking to be over.