Sunday, September 27, 2015

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.

5 comments:

  1. So glad you posted - keep hanging in there (sometimes that's all any of us can do, right?)

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  2. Always lovely to hear how you're getting on, thanks for checking in X

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  3. Thanks for the update. Love your frankness. Be cautious when discontinuing Tysabri and/or transitioning to another DMT. Research the potential downside and ensure that your immune system does not charge back with a vengeance causing even more severe neuro deficits than existed previously. The top-notch http://multiple-sclerosis-research.blogspot.com has run a ton of articles on this subject.

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  4. Hello
    How are you! Still thinking of you. It was good to hear from you again in september. Some good news and others not.
    I find it so hard to understand this need to hide depressions. And if it`s out of concern for other people, I find it much harder to be around people who hide there depressions than people who talk about it.
    However, I hope even more things change for the better in your life. I hope 2016 will be a good year for you!
    All the best wishes and lots of love,
    your distant friend
    K

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  5. It has been a year now! how are you??

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