Update 9/27

What's it been? Seventeen months?
I am going to try and remember what has transpired in that time.
Some shit has gone down.
Some shit is different, for better or worse.
Some shit is still, shit.

• Moved again, another big one. Much happier here. Big change. Relocating every few years feels right.

• Still on Tysabri. Been about 20 months or so.. still get night sweats for a couple days after. 

• Since last update usual roller coaster of goofy symptoms. Had run in of vision issues a couple times, on top of existing right eye blur. Nothing that has stuck around more than a week or so.

• Done some traveling when possible. Been trying to use time left wisely and see shit. Aside from visiting a few major cities, hit up some natural sights. The tallest/largest/oldest/whatever this or that.. Enlightened with tons of natural history and prehistory shit. Created in six days...suck my cock.

• Still with same girl, fourteen years, we'll give it a couple more before calling it quits. Fucking love buzz and love sickness. Like a couple junkies at times... Some days its truly euphoric, in the clouds, and others its fucked beyond it all. Putrid/sad/pathetic/desperate on both parties. 

• Do not have a dog yet. I feel like the time to get one is coming. Its been hard dealing with the reality that you will lose this love again. It hurt so much with the last dog. I cannot express how much I miss her. Blah Blah Blah, the love you receive is more than lost, whatever, it was devastating. literally sending me to the hospital. Selfish? Maybe, but give me time. I will have another dog (or more) in my lifetime. It breaks my heart and brings tears just writing about it........ she left a hole in me and I always step in it.

• The cat that was "rescued" has turned into a fine member of the household. She is closer to a dog than a cat. She fetches and comes when called. gf is jealous of the connection she has with me. She's my buddy. 

• There was a major, major, potentially life altering run in with the law over a felonious amount of weed. Thankfully the country is changing and shit gets dismissed. Don't do two illegal things at once and you're good. 

• Still using a cane because of balance and occasional gait issues. Been walking a lot in the last year. Since we relocated, we are in a city with tons of greenways, many miles of them.. Walk nearly every day first thing in morning, occasionally in evening. Distance really depends on how body is feeling and the weather. Worked up to average of 2+ miles each time. There are days though, I can barely hoof out a mile, usually due to heat or body simply giving up. In our travels, completed some hikes that were rough but rewarding. Had a couple stretches with pseudo exacerbation putting me down for a couple weeks and didn't walk.

• The balance issues have really been bothering me as it feels like one symptom that I cannot reign in the least bit. With all other quirks, there are ways to prevent or lessen their effects. But the fucking balance... Haven't been to physical therapy in person, but I have attended online via youtube.. no improvement. Doc said sometimes it cannot be corrected through conditioning or training, some damage is irreparable. 

• Got involved with WalkMS this year more than I have in previous years. Made friends with folks at a local radio station. They were nice enough to sponsor the MS walk and ran free spots and advertised the event. They had a great turn out. Nice of the station to do that. They jumped all over the moment I asked. Going bigger next year. This is a major city but the MS Walk is not planned to its full potential. Going to try and mimic some things that are big draws at walks in other cities. I have to admit, I am a little iffy about fundraising for NMSS, I feel like there are some other MS organizations with less politics and money is being utilized more efficiently.. in meantime, awareness was immediate goal.

• Having MRI soon, been over a year. Need check up, at risk of PML. Been having some activity lately that is a little alarming. Its the multiple things stacking up at once that are unsettling. Lhermitte's sign has gotten a little touchy. It used to take a certain amount of bend to spark it. Now it has a wider range to the left or right when dropping chin. It just seems easier for it to kick. Recent vision issues in left eye (better eye) and headaches originating from right eye is a bummer.

• Still deal with roller coaster depression. I think its hid well. No need to involve the world in my bad attitude. Simply suffer in silence. I can say with all confidence, no matter how bad it gets, I am never a threat to others. I just suck it up and go on with it.

 I am having trouble remembering everything else. there is a lot of little things sprinkled in throughout the year plus, multiple concerts/events, always trying to keep active with something. If there's not a specific scheduled something, its trying to see/visit something for the first time.

The doctor said he would like to see me on Lemtrada. I would likely give that a go, but I have been seriously considering stopping all DMT after Tysabri.
I would just ride it out. Whatever exacerbations come and what they bring is what it is.
Ride it until it gets to that ledge. The point of losing independence. At which point, I would turn to complete independence. I am already, truly, at peace with that reality.

Thank you to anyone who had sent a message during this 'hiatus'. I appreciate the thought.
I hope everyone is well (enough).

I'll write again when I have time/desire/whatever brought this about.

Update 3/5

It's been a minute. Things have happened since last update four months ago but haven't felt like writing.

• Started Tysabri after dropping Tecfidera. Side effects were shitty and did not subside. First infusion was a couple days weeks ago. Seemed to go well. Only dealt with drowsiness as a side effect. Some burning discomfort in arm during infusion. 
• Biogen is paying for the drug and infusion with their financial assistance program. The program covers the entire drug cost and first $100 of infusion/administration. The infusion center was nice enough to lower the cost so I pay nothing out of pocket. Nice place with private rooms. I don't own a recliner but the one there makes me want one...
• Got a shingles vaccine a week before the infusion as recommended by my neurologist due to the increased risk of shingles while on Tysabri. The vaccine is expensive, over $200. The local mom/pop pharmacy that I already use turned out to be the cheapest out of half dozen places I called and price checked. Getting the vaccine while under 55 years old is using it off label, hence no financial assistance available.. I would have been really pissed at myself if I ignored the recommendation and ended up with shingles...  
• That motherfucker caused a really bad reaction. Injection site on arm turned dark red and hot to touch, then my whole arm got swollen. I was in total body pain (more in arm) for a few days. Benadryl was the difference maker. Took me a couple days before I sought attention for the swelling, and after benadryl recommendation, over night it was making decent changes to the swelling and redness. 
• Currently dealing with another exacerbation that has brought on ANOTHER bout of optic neuritis. Now with double vision on top of the blurred vision. If there is a positive, the blurred vision makes the second image slightly transparent so its not as defined as it would be otherwise. Dr. is holding off on more steroids since I had two rounds, plus Acthar in the last 11 months. He wanted me to get the Tysabri infusion done and would go from there..along with double vision is increased discomfort/pain in both eyes (more in right). Headaches from full day of use have increased. Bladder is useless on demand. 
• It's been cold as fuck this winter. Power bill to heat has been out of control. I thought I was going to move around this time of the year so I did not buy more firewood. Luckily we have not lost power this winter yet. I have kept a couple days of firewood set aside in case we do. Wish I would have bought some, could have kept the bill down. 
• During the fall, an old steam locomotive was making special excursions around my state and to others. I happened to come across someone selling a single ticket, got it for more than half off. Took nice train ride to the town I used to live in. Had lunch with a friend and rode back home an ounce heavier. That was so much nicer than driving over there. I was able to get up, walk around and use the bathroom as needed. When I drive over there (about once a month), it takes two hours each way and I do it without a single stop, and drive back the same day. It really beats me up and got old the first time. 
• February marks three full years since the girlfriend and I last kissed. Initially for the first several months after I discovered her infidelity, it was simple thing to give up. As time went on, it became a forgotten thing of the past. There's no attempt to kiss between us. There's no other sign of affection that would draw the moment closer, its just a thing of the past. Its been only on an extremely rare occasion where I have witnessed a kiss/embrace that left me feeling a little envious. I find myself shrugging it off with a thought reminding myself that its all bullshit. Fucking and sleeping is the closest we physically get. I wonder sometimes if I have forgotten how to kiss.. 

Additional vision issues are making work more cumbersome. I am staring down at my last one or two decades and I refuse to spend it working. I will be filing for disability before too long. I just have too many things I want to get sorted before going on disability. I need to get to a state I can stand to live in.
I am running out of time. Need to figure this shit out soon
The idea of dying in a car accident after all of the working and struggling so far is extremely disappointing.
Really need to squeeze what little enjoyment I can possibly get from my time left...its difficult having no direction and no goal.

I drafted this post two weeks ago, and left it to decompose. Get it together dickhead.

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.