it’s a pain day-for dr

today is one of those days i wish i could remove my skin.  clothes are so painful.  sitting down is painful.  lying down is painful.  standing up painful.  i can feel every fiber in the shirt i am wearing.  i will have to go and find another one as soon as amy wakes up.  i can’t stand this all day.  it feels like burlap but it is really a nice cotton shirt.  the weather is cooling off which means more skin to cover up with fabrics that feel like sand paper.  i used to love the fall when i could wear sweatpants or lounge pants all day, but i loathe it now.  the same clothing that used to give me so much comfort feels like it is cutting me to the bone.  i wish i could just take my skin off and hang it up somewhere, maybe in a closet.

i accidentally spilled coffee all over myself this morning.  that happens when you have weakness and trembling.  i could feel the wet spot on my shirt and shorts, but it didn’t feel wet, it just felt like cutting pain in precisely the places where my clothes were wet.  now i am in dry clothes but those spots still hurt.

i get so tired of this!  so fed up!  i wake up every hour and a half bc my body is in usch pain.  sometimes it is bad enough that i wake up screaming, sometimes i wake up and have to vomit.  but i never sleep more than an hour and a half at a time.

i am exhausted.  every step takes so much effort.  i have to decide if what i need to get up and do is worth the expense of getting up and doing it.  how does this rank in importance?  wash dishes ranks pretty low, and i won’t get up to do that but i will do it if i am already up.  someone bleeding usually is pretty high on the list of priorities and i can generally muster up the will to move for that.  using the restroom falls somewhere in between the two and i can put that off until i absolutely must get up and go.  every movement has a priority.  that is what happens when you hurt so badly.

i am in a pretty piss poor mood, and i have already been on the brink of saying just anything that crosses my mind, which is not great bc generally it is not even what i really feel, it’s just gut reaction to a situation.  and right now my gut reactions aren’t all that fab or reliable.  i am hoping that i will have enough will power not to alienate everyone in my life today.  but really who knows?  they may all get tired of my snappy retorts and decide mutiny is the best course of action and behead me in the backyard…

i wonder how long it would take then for my body to stop feeling pain

**after amy read the above she said “beheading you would take too much effort, so you are safe”  well i see i am safe from the beheading but what about poisoning?


i have also been dropping things alot today and walking into walls.  i noticed last night that part of my right bicep was shaking and my hand was shaking.  my foot is dragging a bit today but i have not fallen today.  i think this is mostly due to my being restricted to the bed.   i am vomiting and wicked nauseous today.  the dizziness or vertigo which ever it is is extremely bad. as is my visual perception.  i have to close one eye to read.  auditory processing is mildly effected-i can hear words but it takes a few seconds to figure out what they mean and if there is alot of noise i can’t understand anything at all, it’s too overwhelming.

10-19: passed out, have no idea what happened i just lost consciousness.

10-20: got extremely dizzy, tried to answer amy’s questions but my words were not making sense.  she said i couldn’t open my eyes and i was babbling,  don’t remember just remember feeling nauseated and dizzy.


  1. vicbriggs · October 14, 2013

    That’s terrible. Hope you get better. I can’t say I’ve ever had a day quite as painful as yours, so there is little other than sympathy that I can offer. Wishing you well x

    • cakeleevannila · October 14, 2013

      i have a weird problem with pain, for myself. i feel that if i show how much pain i am in then i am being weak. i didn’t even raise my voice or say anything except to tell ted to count and pay attention during the 12 hours of pushing during labor with eli. it is just something about me, but when i see others hurting i don’t think that they are weak. i think they are in pain and their reaction is normal.
      it’s hard to have an illness that is invisible to drs. they treat you as if you are making it up or over-exaggerating. sometimes i begin to wonder if they are right…doubting myself. if it were real wouldn’t they be able to find it? shouldn’t something show up? the positive mono was the first good news (and that is a pretty fucked up deal when a positive test result is good news!) we have had in years.
      i was in remission for about 4 years and doing great! then this last june bam! i have been down every since then.
      i am trying to keep an accurate account of my pain and issues i am having so i can take it to the dr in printed form instead of hoping i remember something when i am in the dr’s office feeling intimidated and unsure. so some of it may seem like i am just bellyachin but i am trying to keep my symptoms straight.
      thank you so much for your support!

      • vicbriggs · October 14, 2013

        You have my heartfelt sympathy for the pain and tough times you are undergoing as a result. I am not sure whether there is a way to counter it and for you to get better, since I have no knowledge of what you have been diagnosed with. But it is good that you are keeping a journal of this. I am sure that your blog is a great help to other sufferers and that they find comfort in knowing that they are not imagining things, and have a leg to stand on when they themselves appeal for medical help.
        I hope that there is a way for you to get better and that you will come the stronger out of it for being open about what you are going through, and from documenting your journey to health.
        Wishing you all the best and sending you my warmest regards,

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