Saturday, March 9, 2013

Update 3/9

Completed Prednisone tapper last week.
Regained some feeling in my left leg, numbness is spotty, numbness around knee adds to the walking and standing difficulty since the knee will give out on its own. I can now move toes on my left foot.

I picked a day of the week to get my blood work done and decided that was going to be the day regardless of how my body reacted.
Sat down to get blood drawn, I was feeling the anxiety and clammy shit coming on. I toughed it out, though I admit I kept my head turned and conversation moving. I could feel the needle go in a few times with her saying "hmmm" each time. What the fuck. She says I am dehydrated and my veins are 'puffing up'.
I drink several cups of water and update my records with a PA. Tried again and could not draw any fucking blood. I was told to return another day and drink lots of fluids the night before and day of. I was really hoping to get my 'Man Card' back...

Went to another pharma sponsored dinner. This one was at a church, and I already had my reservations about going, went anyways. The reality was as depressing as the idea. Again I was the youngest by 15-20 years. Most were using a wheelchair/walking aid, and everyone was looking rough. I stuck out like a sore thumb because I was new, and young.
When I requested a couple months back to be added on a mailing list for meetings, I was asked my age at that time. At the dinner I had multiple people approaching me saying "You must be x", so it may have been announced someone my age was joining the group, its not like I am a teenager but I might as well be with this group. I was asked the usual, how long ago I was diagnosed, what drugs I take, and if I would be interested in meeting their granddaughters. Also asked what church I attend and that I should visit theirs.

I didn't find anyone in the group that I felt comfortable with or gave me the right vibe where I can ask if they use cannabis. I am not open enough to ask a group or even an individual stranger if they use.
I have two additional dinners coming up (my future dr will be speaking at one).
I hope to run into someone who is younger and doesn't walk on water. To most here I might as well be sucking the devil's dick.
I would really like to find someone soon. Its been a long time now. There is a difference in how I feel with and without.

Cognitive function has been a major issue the past two weeks. At times I sit my desk and I am out of it. Feel like I have lost direction. Multiple days have been wasted in the last couple weeks where I am not getting work done. Sitting in my office staring outside. A few days were worse than others. No work, no pay.
Lately I find myself mentally somewhere else, don't know where.
It creates a constant doubt since I feel like I am precise in my thoughts/actions and now I am convinced I am always forgetting something or about to lose my keys.
If it was depression I imagine I would have seen this before.


  1. It may not be depression. But what about the life you live. You eat, sleep, work at the computer/phone and spend your time with your girlfriend. And this is what you have been doing time. I think I could last one or two months living like that....Isn`t there anything you could do to better the quality of your life?
    Do you get out? Do you have a bonfire like eralier? Is there any way you can meet other people? What about getting a dog like you wrote about earlier? And your sister, do you get to meet her?

    Congrats on going for the bloodtest by the way!! Well done, even if it didn`t turn out teh way it should.
    Sorry to hear about the dinner! But there must be someone younger with MS. Maybe you can find someone else....? With or without....
    Good to hear from you though!! Write again soon.
    Take care, precious friend!
    Yours truly

    1. I have been in this routine for a while now. Its not ideal for anyone. But its was I can handle.
      Lately I have only left the house for doctor visits, MS dinners and occasional trips to store (we shop once every one to two weeks).

      No plans for dog yet. I have enough trouble supporting us as it is, and it wouldn't be fair to bring in a dog and not provide the life I want to give it right now. I wouldn't be able to afford the proper food and be able to give it the physical life it should have.
      I cant just hop in the car and take the dog down to the river/creek for a swim or to a dog park to socialize like I want.
      Just not the right time yet.

      My sister might visit in a few months, she is working on getting the time off.

      I am trying to find someone with MS that I can become friends with in real life. It's difficult when they are decades older.
      I am going to the MS dinner/meetings really against my will. I don't honestly feel like going to these things. They are depressing and I generally never walk out knowing anything knew.

  2. I understand. Time has to be right.

    I hope you will find someone with MS you can be friend with. And there are also some good people without MS out there:) What about "meeting" someone on the internett? And then you can maybe meet up later, in real life?

    Have you thought about trying ldn? Did I ask that before? It has been all over the media here in Norway. Nearly as a miracle-cure. It has been hard to get a prescription because it is so cheap doctors will not sell it. But it works, so they don`t have any choice but to prescribe it.

    Lots of love

  3. I Am thinking of you every day! I hope you find A way to feel better. Thank you for being my friend:)