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.