Thursday, February 9, 2012

Update 2/9

Interesting week so far, started off pretty shitty and has been a little relentless. But it has some decent moments.
Weekend was shit. Waste of time. Worked the whole weekend. I was on call and the phone calls wouldn't stop. People in that town are getting dumber I suppose. Most of the calls are not what most people would consider an emergency.
Three days this week a different dick each day has called between 5-6am. Really, really fucking annoying.

Recently went to a MS meeting. At the meeting a top neurologist in the town was there for Q&A. I asked about how common residual effects from an exacerbation are, and if there was a resource for patients to look up possible conflicts between medications. Even though both of my doctors are updated on what I have taken in the past, they both seem to just pile on shit without using any caution.
I mentioned in the meeting that I had dropped all medications except Gilenya and cannabis when it is available.
The lady that runs the meeting said that they couldn't talk about who to get what from who, but if anyone wanted to help me they could see me after the meeting, and they did. After the meeting 4 people approached me, one simply stated that he smokes (and said he wants to catch a ball game when the season starts), three said they would either supply me or set me up with their dude. One person gave me some which was very nice of them. So I walked out of the meeting for three connections, when in the six or so meetings I have attended I have left there with zero new information and feeling worse about the MS.
I was given enough shit to last me a few days, so I am very grateful.

The Walk MS event is going to be happening in my town in the upcoming months. I had been letting family know about it. I didn't necessarily invite anyone here, but when they mentioned about potentially coming here I told them they were welcome anytime. Well it fucking blew up in my face a couple days ago. I already knew of a couple immediate family members planning on coming. Within 2 days I have been told of atleast 8 people that are planning to come. 8 fucking people is a bit much, and it was mentioned I should expect more.
Now I love my family and would do anything for them, but Sweet Baby Jesus Christ that's too many in one visit. I have a three bedroom house, one room is my office, the other a guest room. where the fuck with they all fit?
We will manage.

The one group that kind of throws off the vibe and balance of the weekend will be my grandparents. I never thought I would ever see them make a trip up here. They are up there in age and do not travel well. Most the remaining family smokes dope and while I have already told my Grandmother I smoke pot due to the MS and she is accepting of that, it is as bad as kicking a baby for the rest of them to do it. That goes for cigarette smoking as well, which most of them do. But that is one thing I have told them to suck it up and deal with it. When my Grandmother saw me smoke for the first time, she took a swing at me, and threw a fit. After that she never gave me shit, and never bitched at me again. So the family that does smoke needs to just take the swing, and get it over with.
I will promise this, I will not hide my dope smoking around her. I swear, if it is time for me to smoke and she is outside, I will march right out there with my joint or pipe and fire it up. I will then proceed to attempt the most complex, and intelligent conversation she has ever heard. I already talk over her head at times and she tries to keep up, but I will rehearse this shit. I will make sure any misconception she has, is completely blown away. Again her and I already talked about it. Last time I was down visiting them, I brought it up when she was asking about my medications. She even said if she knew where she could get it, she would right then. Little did she know I was getting ready to leave her house and pick up three ounces.

My grandfather asked my mom once last year if she "had any of those funny cigarettes", I guess he was in pain one day and was open to smoking it (again?). She said she didn't. I will ask him when we are alone if he would like a toke. I love and relish, I go so far as to say I get a rush from getting to smoke with family members that I never thought I would get to, or never thought they would ever. I have smoked with other grandparents, aunts/uncles etc... I have a cousin that I was around when she was born up till she was in early teens and she moved. One of the smartest and brightest people I have ever met. Her mom said she knows her daughter has smoked and probably would smoke when she came to visit. My mind was blown thinking about the memory of the sweetest girl in my life taking a toke of that shit. I would never pressure her, but I will offer it once since she is 18 now. I get giddy thinking about it, and I think that's where the rush is kicking in... I never would pressure anyone into it, although I did in my late teens with one of my good friends. He was drunk so I figured I could talk him into it. But he never gave in...

My life seems to be all or nothing especially when it comes to friends, family, or pot.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"


  1. okay, wait....

    so all those folks are coming to support you and help raise money/awareness for MS... and they all plan on staying at your place?

    so good they are supportive... i guess maybe they don't understand that being overwhelmed like that doesn't help us at all...

    and i don't know about you but for me, my routine is so crucial... especially at home... it helps me maintain and control how i get through the day successfully...

    1. To my knowledge they are planning at staying at my place. I have already mentioned to a couple family members how much trouble it will be and the burden the thought alone has put on me.

      A line will get drawn here soon. Its tiring enough with one or two family members visiting. That ongoing feeling that you need to entertain or be present because they did after all make the trek to see me. So I will get this figured out.

    2. send them all the Spoon Theory...

      good intentions and kind hearts are wonderful but as you say, it can also be burdensome when they don't really understand...

      glad to hear you are doing the walk :)

    3. Sherri,
      Thank you for that. I never heard of it before, it was a nice read. I sent it off to some of my family. Told them while I was happy to hear that my family wanted to come and support me, it took some time before I thought what is really involved in a visit like that. It took me thinking about it using Spoon Theory to really think it through. It is pretty much dead on.
      Thank you again.

  2. I am so glad to hear you met some good people at the meeting! And got medication too! Hurray:D

    I don`t really know what a MS walk is, but it sounds like something I would have wanted to join to if I were your family member. They want to come, to show that they care and to spend time with you. But couldn`t they stay somewhere else? And if they are staying at your place then OF COURSE they should take care of everything. Planing and preparing the meals etc. And they want to met and talk to each others too, because they haven`t seen each other in a long time? Then you don`t have to keep them company all the time.
    And you should smoke whenever you want!! They would too if they were in your shoes.

    It`s good to hear from you again. And specially when positive things are happening. I should spend more time reading this. A lot of English expressions to learn here. Hehe....Maybe later. Babytime now.
    Take care!!

    1. Walk MS is a annual fundraising event organized by the National MS Society, and the local chapters.
      You register as a walker, or just simply donate to the cause. But each walker tries to get people to donate or sponsor them.
      This is my first full year with MS and I decided to participate.

      The family stuff has been addressed. People will be getting hotels all around, and certain family members will be taking charge to make sure I do not get wore out early and struggle the rest of the day. I want to be able to visit with everyone, as they want to visit me and others. We will make it work somehow.
      Some family is coming from various states, so many have not seen others in a long time.
      I was told not to worry about feeding or housing people.

      If you have a question about an English expression, ask away, I will do my best to explain it.

      Hope all is good with the growing family.

  3. I wish we had Walk MS here too. It is good to know you will be taken care of!:)
    Yes, you had some expressions here which I don`t understand:) Like: "throws off the vibe" and "take the swing"

    1. "throws off the vibe" The vibe is the feeling among the group or herd. It can be a good feeling or bad feeling, we sometimes refer to that as a "vibe"
      Out of respect for my grandmother, there will not be any cursing/swearing. No smoking, drinking, etc.. Basically no partying with the younger family members when she is present.
      Without her there would be a good vibe with the younger family members who are more relaxed. She can be intense and will change the vibe by walking in.
      We love her, but she has her place...

      "take the swing" is the action of trying to hit someone. She swung her hand at me to hit me. I think she actually did, instead of my face, she got my arm. "take the swing" can also refer to trying something. It comes from swinging a bat I think. In baseball the greatest players in history were only were good about 3 out of 10 times. They "take the swing" at it.
      In this case I was telling my sister to take the slap or hit from my grandma, get it over with and she will let you alone.

      If those don't explain clearly, let me know and I will try again.

      For MS related info in Finland you can check
      They may have some events.

  4. Thank you! Those are very good explanations and interesting to learn:)
    I guess Finland would be too far. I checked some Norwegian pages, but guess they don`t have any such Walks. It would be a good idea though. And specially where I live. It is one of the places with the highest density of MS patients......Maybe I should write the organizations here and suggest it. Hehe:)
    I hope your days are not too bad, and that your weekend will be better than the previous! Don`t answer any phone calls;)

    1. Swing and a miss, I knew it was Norway...

      If the phone rings, I have to answer it. I can only hope it doesn't.

    2. and place doesn`t matter, does it? As long as you don`t call me Swedish:)

      It means you are actually at work all the time? Hope you had a good weekend, without any calls!

    3. I took full time on call to make extra money, so it does add up to extra work on weekdays and weekends. Worked about 8 hours between Saturday and Sunday. A couple of those hours were spent Friday night around midnight.
      So the shitty part has been the time when the call comes in, not necessarily the amount of time (which can suck at times).
      All part of doing what you have to do...

  5. I try to use the spoon theory to explain. Nobody listens tho.

    Anyway great news re meds and hopefully a possible hook up for more. The MS walk sounds fab too... Although I worry about how much extra work it will be for you. It's lovely to have support tho.

    So fab hearing you a bit more chirpy!! Xx

    Jax xxxx