Wednesday, October 9, 2013

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.


  1. So good to hear from you!! I am glad you got your new medication, althought it`s not working well enough yet. And the story about your cat is really touching. I am glad you found it. Seems like it has got a good home with you.

    I am sorry about your ON. I don`t know what ON is but it doesn`t sound good!

    Are you sure you don`t have hypothyreose? Have I asked that before? Many of the symptoms are similar to MS so it would be hard to detect. But those to illnesses sometimes occure simultaneously. The reason why I am thinking about it is the way you respondt to anti-depressants. the way they don`t work. That is very common with hypothyreose.

    Anyway, I am glad you write. I am often thinking of you!
    Wish you all the very best!
    Big hug

  2. ON is Optic Neuritis. Its inflammation of the optic nerve and what causes the blurred vision in my right eye.
    There is nothing you can do to treat it.

    I have looked into hyperthyroidism before, and while not tested for it, I am certain I do not have it. There are only a couple symptoms that are shared with MS but many more symptoms of MS that dont go the other way. Aside from the symptoms, the lesions on my MRI's are indicative of MS...

    thanks for writing.

  3. I am really sorry ON can`t be treated!!

    I know you have MS. I don`t doubt that. I just thought you maybe had hypothyreosis (not hyper) in adittion to that. And if you do than some symptoms could be treated better. But it is maybe a wild guess, a shot in the blind......
    I just wish something could make you feel better.

    Thanks for writing too!
    Lots of love

  4. Thinking of you, my friend!
    Take care. As much as you can.

  5. I miss you, so I sent you a mail:)

  6. It has been two months now. How are you?
    Wishing the very best for you. Your life is so valuable to me.


  7. Best wishes for Christmas!
    Big hug!

  8. Lots of love! Keep thinking of you:)

  9. I am quite surprised to discover how superstitious American people are. At leat that`s what is seems like to me. Why do they believe that they in some way have brought things upon themself? Illness for instance, is a punishment. That sounds to me like some kind of african tribal-religion or something like that. Of course it might be true. Some people smoke too much, they get ill. But; "I have been a bad sister/friend/lived an immoral live and therefore I am being punished...." It doesn`t make sense! At all!

  10. Sending you all my best wishes for 2014!

  11. +1 to the above.

    I hope you post again soon, my friend =)

  12. Yes post again I think this has been yhe longest silent period uou have had I hope uou are ok ish as much as you can be and it is again lack of desire not anything too bad. Maybe you have been moving? X P

  13. I understand too, that you maybe don`t want to write. To write all the bad things and be reminded of terrible things in your life. I hope that is why we don`t hear from you. But just a little "hello" would be nice.
    Love K

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