Wednesday, March 5, 2014

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.

28 comments:

  1. Hello my friend, I am glad you wrote after so long. I was beginning to fear that this was going to become another abandoned blog. Im sorry to hear about the optic neuritis, but it is awesome that Biogen is paying for the drug and infusion with their financial assistance program.

    I can so relate to your feeling of running out of time. But atleast you squeeze what little enjoyment you can possibly get. sometimes I think I'm just sitting here like a rock.

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    Replies
    1. I'm squeezing. Just getting too tired from squeezing so much.
      I didn't write about it, but I have been on a stretch of trying to pack what I can into my weekends.
      I check the local event calendars and try to plan a full day on a weekend (usually a Saturday as most is open).
      I have been trying to visit a local museum, attend an event, or at least stop by a local small business I either have or have not been to yet.
      Some days I am left with feelings of accomplishment, some days I may be left exhausted but with some personal satisfaction that I tried...

      I am going to try my best to not abandon ship. If I do leave, I expect myself to say something.

      Delete
    2. Hey! That is good to hear!! You are doing a lot of things which you didn`t do earlier. I am glad to hear that:)

      What does that last bit mean?
      "I am going to try my best to not abandon ship. If I do leave, I expect myself to say something."
      (I am glad I can blame my lack of understanding on living in a non-Englsih-speaking country)
      K

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  2. Welcome back. I hope things sort out for you in the best way possible. Good luck.

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  3. Thank you for writing again! I wish things were better for you! I understand you don`t want to write so often, and it is difficult for you. But you are in my thoughts and my heart also when we don`t write. I hope you know that. It`s good to hear about your train ride and meeting with your friend. I hope you will get things sorted out in the best way for you!

    Take a lot of care. You make a difference in my life. Thank you so very much for your friendship!

    Love
    K

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    Replies
    1. thank you for the thoughts and the comment.

      Delete
  4. But don`t be annoyed with yourself for not writing. It should not be yet another burden, something you have to do but don`t feel you do well enough. Be kind to yourself, see how well you manage despite all the difficulties you have in your life. You are a beautiful good friend and I wish I could give you a big hug!
    K

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    Replies
    1. I was annoyed with myself for procrastinating. I wrote the entry two weeks before I posted it. There was no reason other than I just didn't hit publish.

      Delete
  5. Hi
    Glad you have written, sorry to hear you have been having a rough time with O.N, and treatments. thank you for writing , I wish you all the best and that more opportunities like that lovely train trip come your way. Make the most of what life hands you. I think you do need to change what you can to help give you the strength and resilience to live with what you cannot change... be brave..
    P x

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    Replies
    1. Thank you for the comment.
      I am doing my best to extract the good out of the moment.
      Trying to get what I can out of each day.

      Delete
  6. Sending you love and good energy. Wishing for A miracle to take away your ms. Wish I could hold you. I do hold you In my heart. As close as this distance allow. And don't feel bad about not writing too often, just feel good about opening your heart to someone. With love K

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  7. love love love love love love love love love love

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  8. nearly half a year......

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  9. https://www.youtube.com/watch?v=H_a46WJ1viA

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  10. Been checking in for updates see how you are doing, understand if you don't want to write. I hope you are extracting some good moments out of your days.. x P

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  11. Still thinking of you!!
    Peace and love
    K

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  12. Lots of love for you!!

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  13. You`ve got mail:)

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  14. Jesus, dude. Did you cash your chips in?

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  15. Replies
    1. Can`t it at least come out as real hearts!!
      I even had to lie to post it. Had to put a mark where it says "I am not a robot."

      Hope you are well!!
      K

      Delete
  16. Sending you good thoughts. Lots of good thoughts and love!!
    Your friend
    K

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  17. Ok What's happened ., P x missing your
    Comments

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  18. Still waiting....<3

    Love K

    ReplyDelete