A Very Bad Day

Flagstaff, Arizona, is a magical place.  Even the KOA Kampground (a chain that I avoid like the plague) here bumps right up against the Coconino National Forest.  Everyone is nice (well, almost everybody), and it’s just incredibly cool to go to the grocery store and listen to families talking to each other in Navajo or Hopi.  And unlike the Mescalero Apache, who are sick of white people, the Native Americans and white people seem to get along just fine, even though the Navajo and Hopi got a really bum deal at first.  In my opinion, before Americans start getting all self righteous about Israel, they need to give back all the land they stole from the Native Americans.  And I am serious about that. 

Anyway.

I met my new spine surgeon for the first time today and had a set of xrays that were shockingly worse than they were two years ago.  My cervical spine is starting to look not like a spine at all, but like some random stick, bent in the wrong direction.

A new finding is that I have zero reflexes in my right arm, very little in my left.  Strength was 0/5 on the left and 1/5 on the right.  I guess that explains why I have to use two hands for a lot of tasks, and couldn’t open any sort of bottle even before I fell on my left wrist, which is getting worse not better even though I keep it in a splint. I see the hand surgeon on the 11th.

I showed the doc my tremor and told him about the muscle spasms and twitches, and that I was worried about spinal cord compression causing that.

He said I might have cord compression, but that it wouldn’t cause those symptoms or my weakness and lack of strength, but MS would explain those things.

I have been thinking that myself, but to hear him say it was like another nail in my coffin.

So he ordered an MRI and referred me to Neurology to investigate the MS angle.

By some miracle, someone had cancelled their MRI slot, so I was able to have it done this afternoon.  The MRI techs were nasty and snotty, which did not help my emotionally fragile state at all.  When a neurosurgeon tells you you probably have MS on top of your spine looking surgical, it’s harder to let snotty technicians roll off your duck’s back.

So when I got back to my van and found that Atina had helped herself to things in my toiletries bag, and shredded stuff all over the floor, the bed..I went nuts.  Apeshit. I screamed at her.  Threw things.  Then I collapsed on the floor and screamed and screamed and screamed.  Atina tried to help me, but I wanted none of it, so she lay on the edge of the bed trembling while I lay on the floor screaming.

Everything hurts.  I have a headache, which I’ve had all day, from high blood pressure.  I take the damn pills for it, but today they didn’t work.  My BP was 152/95 even after my pill, so god knows what it would have been without.

Tomorrow I have to make all sorts of appointments, neurologist, Neurosurgery recheck, RV repair because more components are shitting the bed; and all I want to do is sit in my new chaise and get wiped out on cannabis and benzos to counter the paranoia from the THC overdose.  I might still, if I can get enough done in the morning.

People, it was a very bad day, and I have a feeling it’s going to get worse.  I’m carefully thinking about where that red line is going to be, and how to arrange things.  I have the means.  I have no interest in “palliation.”  I have no one to help me.  I can’t stand to be around other people, like in a care home.  I can’t stand strangers in my environment.

I’m in constant pain, I’m exhausted all the time, I drop things, I fall.  It’s getting to be that time.  I’m winding down.

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60 Comments

  1. So sorry to hear about this shitty day from hell. I understand your need to plan things, believe me I get it. I just wish you weren’t alone to do it. I know you have Atina but another human would be nice (least in my mind). You suffer so much. I hope it doesn’t turn out to be MS. Sending you hugs from Boston

    Reply
    • Thanks so much….I know that you also know pain and suffering all too well.

      I’m actually glad I don’t have anyone else, except for who will care for Atina? I guess if I become unable to care for her, she’ll have to go to Malinois Rescue, because she needs her medicine and special diet for her kidneys. I wouldn’t trust anyone else to care for her.

      I’m so cranky these days, another person around would give both them and me a stroke.

      Another thing that really pissed me off today was those stupid forms you have to fill out, with only two choices for gender, several for race, which infuriates me because who the hell needs to know that on a form that nobody ever reads anyway, marital status….uh, I didn’t see a space for “polyamory” or “group marriage” or anything other than married/divorced/single/ separated, holy fuck, I got so pissed I just “x’d” those things out. So I was a pain in the ass, but I had just has very bad news and had no patience for bullshit out of “Ozzie and “Harriet.”

      Reply
  2. My dear Laura, I am so sorry to read all you have written. I hope the doctors have a solution for you. Hang in there, my dear friend. Love and hugs, lots of hugs for you. I’m glad that you are at least in a nice place. XXXOOO

    Reply
    • Thanks Samina. I’ve had this spine thing going on for 30 years. It stabilized (kind of) during my forties and partly into my fifties, with exacerbations now and then, so I’m very grateful for the opportunities I had to do hard physical labor like bailing hay and training horses and dogs, stuff like that, and skiing, and skating and rollerblading and dancing, and playing the banjo and fiddle and sawing firewood up with a chainsaw and splitting it with a wedge and sledge….I dearly wish I could still do those things, but I’m grateful that I had the chance to do them. I’m proud of you for really stretching yourself on that horse camp, by the way. That took guts. But then, you’re a gutsy woman!

      Reply
  3. First, something completely different…You are in Flagstaff? You are close to me, I’m in Mesa.

    But back to the real stuff, I’m sorry you had to have such bad news at all, much less in such a short space of time. I’m so sorry to hear about the MS possibility on top of what you are already dealing with. I understand your desire to ready your plan, but please try to make it the actual last resort; i mean, maybe it isn’t quite yet. I know you know what you’re doing and i support you in that choice. i just don’t want to see you gone while there is any fight left in you.

    My very best thoughts and prayers are heading your way now. You are in my thoughts. Please take care and rest and feel better (at least a bit).

    Reply
    • Thank you, Kat! Maybe we should get together! That would be fun. I’m going to be here for quite a while, it seems.

      The tricky part about knowing when to say goodbye is catching it while one still has the physical ability to carry it out. I watched my father suffer four years because he waited until he could no longer use his hands. I don’t want to end up in that predicament. I really don’t live life, never have, but I have always been able to find something interesting to keep my mind off it, in the form of hard work. I get very irritable if I can’t exercise hard every day. And I can’t, so I’m always helplessly irritable. I have to watch my window of opportunity closely. It’s a max-min equation.

      Reply
      • it would be really neat to actually meet! sadly, I don’t have a car, but i can get around in the east valley of phx ok, if you could get that far.

        i understand your thoughts and reasonings; i just hate to think of you at that point (yet) (at all), but I understand, and even have the same leanings.

        Reply
  4. I’m so sorry you’re having such a crap time. It’s not fair that the unseen powers like to pull the rug out from under the good people. I don’t want to think about you reaching your limit, because I like you an awful lot, and I’m selfish. I do completely understand it though. I’ve had ‘the talk’ with my husband, and he knows my feelings on the subject. Much the same as yours. You know I would take care of Atina in a heartbeat, no questions asked, but she may not be the happiest with my lifestyle. πŸ˜‰

    I’m really hoping your excursion gets better. You, ma’am, deserve a frickin’ break!

    Reply
    • Thank you, sweetheart. I know you appreciate my predicament. I’ll squeeze all I can out of this life, until it becomes dangerous to continue.

      Yes, the unseen powers. In Aramaic, the Sitra Achara, the Other Side. They despise goodness and light, and put stumbling blocks before us, anything to prevent a strong sprout from developing into a fruit bearing tree. Or perhaps allowing that tree to bear fragrant fruit that is blighted. When I get free of this body, I am going to kick some ass. They don’t know who they’re fucking with.

      Reply
  5. Only the wearer knows where the shoe pinches. My words would be just words so I do not want to lament about your condition. I hope you get some shower of grace that makes your journey easier and better.

    Take care

    Reply
    • Thank you, Ashu. That is a very wise saying.

      I could use a shower of grace! Send it, send it! There will be plenty to share. Grace increases with sharing!

      Love❀❀❀

      Reply
  6. sandracharrondotcom

     /  March 2, 2016

    Ok Laura I know you aren’t in the middle for fake petals right now but all I could think while reading your post was, “The chick is RVing it across America. She can do this!” Just stay with us and keep sharing, and at the risk of sounding absolutely cheesy, we’ll get through this together.

    Reply
    • Thanks, Sandra. Last night was really, really bad. Today is not so great, but at least it’s Northern Arizona and the sun is shining, not too cold, just enough for a few layers and a down vest. I can’t stand heat. I really appreciate your support. I’ll make it as far as I can.

      Reply
  7. I don’t have any words of wisdom, as I feel very much like you do. It would be one thing if it wasn’t such a struggle to pay for and find good bud (although that doesn’t seem to be your problem). I’m just so tired of the constant and unending pain, and the fact is that the only way to escape it is, unfortunately, very final.

    However, I know that come payday (tomorrow, so far away), I’ll have found me some bud and will be okay for a time… will be able to hang on for another minute, another day…

    And I can’t help but think of your friend, Atina. Since I’m not a dog or cat person, I really appreciate everyone who takes good care of our four-legged friends. And it makes me sad to think of one less person on Earth who’s like that…

    Reply
    • Aren’t you in NM? There’s an mmj program there. Was me, I’d live on PBJs and tea, and save my pennies to buy bud. I’m sure if you could you would!

      Some days like yesterday I feel like I just don’t deserve this beautiful sister wolf I’ve been given. I need to do better.

      Reply
      • I was in NM’s program for a year, but couldn’t afford it (paying up to $15/gram for crappy bud). And believe me, I’ve cut out a lot of good food from my budget, like my favorite ranch dressing. πŸ™‚

        I think both you and Atina are doing the best you can, and that’s all anyone can ask.

        Reply
        • Aww, crap. I’m sorry NM bud sucks. And I found that growing really good bud is incredibly expensive and labor intensive. If I get over your way, and I very well might, maybe I could bring gifts 🌞

          Reply
          • Patients in the program used to tell me to grow my own, and I’m like, sure, right. And I just learned that my underground connection is dry, so I’m totally bummed.

            If you want to come visit me, you are always welcome. I even have an extra bed, although it’s a single. We could bake bread and brownies, as well as ourselves. πŸ™‚

            Reply
  8. I am selfish and have enjoyed your company for too long in this 2D WP world πŸ˜‰. I would miss you. I still think you have some gumption in you.
    I have only recently learned about how your body starts to betray you as you age. And it sux!
    I still would love to meet sometime this camping season and have a bud-smoking jamboree of craziness around a campfire! I think we’d have a blast!
    Hang in there friend. πŸ’–

    Reply
    • Thank you sweet friend Ilex! If I make it till my new rig arrives in Grand Rapids, I’ll swing by after I visit my friend in Paw Paw, MI, who has built me a lovely tenor guitar which I can no longer play because my hands cramp up so badly. He’s in denial about the whole thing, so I guess I’ll just pick up the guitar and figure out what to do with it later. After that I can cruise by and you and I can go howl at the moon, vape some tasty bud at the Dunes and pass out in the sand.

      Reply
      • We can make sand angels! Ha ha! We’ll be around to camp or for you to visit.
        As a friend, I am sometimes in denial about my friend’s handicaps. I guess it’s my mind holding on to the past. I bet your friend loved listening to you play and longs to enjoy music with you. Enough so, that he made you a guitar! How super awesome!
        I hope that there is some good news from the hand Dr and soon you’ll be jamming out some porch music! πŸ˜‰πŸ˜πŸ˜ƒ
        We’re buying a new camper now also. Daunting! I am a psychopath when it comes to this stuff. I can’t stand most salespeople. Get that chip off your shoulder, Mr. Attitude.
        My boss has a saying as we go over quotes, “Pigs get fed, Hogs get slaughtered.” I’m about to slaughter a salesman in MI that pulled a bait-n-switch on me. I’m hopefully going to buy local, for a better price. The local salesman was not a pompous ass either.

        Reply
        • Love the quote! Pick your unit by doing research, pick your price and don’t budge, make sure that EVERYTHING works before you take that camper home. I learned a lot on this one. Had some serous DOA components, like for instance the 2500W inverter, and if that was dead, who knew what else…so I demanded that they exchange my unit, but since I had already titled it, they wouldn’t exchange it because once it’s titled it’s considered “used.” So instead they ripped a replacement inverter out of another unit, and it just died a few days ago. So, caveat emptor, let the buyer beware. These RV sales people make used car salesmen look honest.

          Reply
          • I feel like I did get a good deal this time. Now let’s hope the unit wasn’t made on a Monday πŸ˜‰ Since the Michigan guy lied to me, I had no issue emailing the local guy a copy of the sales order and say ‘you need to beat this by $1000 & I’ll rip this up’ It got me out of driving to Michigan also! He took $800 off and got me a fireplace (heater looks like fp). Perfect. I understand people have to eat, but then I refer back to my quote. This local salesman didn’t make me feel all slimy after I signed either.
            My last post has a video towards the bottom of the unit we got.
            If you do read it. .. sorry about the ‘doctor slamming’ 😦

            Reply
  9. The Grundlands

     /  March 2, 2016

    These posts break my heart dear liebele, and I am so sorry for *all* the pain you’re in… I wish there was something I could say, some words that might soothe your soul…but all I’ve got is this:

    I love you so truly…I admire and respect the shit out of you…and I’m so grateful for the time and things we’ve shared… you are a true healer and have helped so so many people in your life and I just wish I had the power to heal you.

    I love you. xo, sr On Mar 1, 2016 10:03 PM, “Bipolar For Life” wrote:

    > Laura P. Schulman, MD, MA posted: “Flagstaff, Arizona, is a magical > place. Even the KOA Kampground (a chain that I avoid like the plague) here > bumps right up against the Coconino National Forest. Everyone is nice > (well, almost everybody), and it’s just incredibly cool to go to ” >

    Reply
    • Oh darlin’, I sure didn’t sign up for this. I’m a cowgirl, not an invalid. If I can get to Rochester, can you meet me there? I have to go see my Chinese Mother and Qi Gong Master, Xinyi Young. She has tables! And she and her husband have been my true parents for 25 years. So they will be on my Northern loop. I’d love to come to you, but I’m nervous about border crossings. Love you, hope we can work out a way to see each other!

      Reply
  10. Oh, Laura. I’m just so sorry. I’m not going to insult you by placating you with some lame parable. Just know that I am thinking about you.

    Reply
  11. I’m sorry you had to go through this. I have a small brain tumor and have had to have so, so many MRIs. Why is it that technicians always seem to be cranky?? No one having an MRI is happy about it. We’re all scared about something. They should be understanding and try to make us feel better, not feel like we’re inconveniencing them. :-/

    Reply
    • Yikes, I’m sorry about your brain tumor! Hope it’s the kind that just sits there and doesn’t grow. Does it cause you symptoms?

      Yeah, the techs. The one yesterday told me that she was going to give me 20 seconds between runs in case I had to cough or something, but instead she whipped right through it. So far I haven’t been called back for a rescan, so I guess it must have come out OK.

      Reply
  12. Kara: We ran out of room on that comment thread… Photos, most definitely. Just checked with my only other connection, and no luck there either. It’s like the world’s against me, and now I’m afraid to even look forward to a visit from Dr. Laura and Atina… Excuse me, but fuck, fuck, fuck…

    Reply
    • That really really sucks. 😭

      Reply
    • Not to worry. I’m always happy to bring the party along ;-D

      Reply
      • Not to worry. I’m always happy to bring the party along ;-D

        Road trip, Kara? Some real nice places to howl at the moon in The Land of Enchantment…

        Reply
        • I was just thinking how cool it would be if Kara could join us… Whatdya say, dude? Would you have to fly? Maybe you could just click your heels together? πŸ™‚

          Reply
          • I am getting very sick of this disability shit. I just saw a job I really, really want, but can’t do…can’t we all have a peyote meeting or something and wake up not disabled??? Kara, get your ass out here and help us all kick the asshole disabilities out of town!!!

            Reply
            • Oh, I would love to! I just checked ticket prices to Albequerque, and it’s about $500. Ouch. And then I’m wondering how many drugs I’m allowed to carry on a plane, because I’m like a mobile pharmacy whenever I travel. So, I need to find my ruby slippers and my magic carpet bag, then I’m good to go.

              Reply
              • As long as you have a prescription, you can bring a whole pharmacy on a plane. I traveled from Texas to California and back with new prescriptions for a couple of months and had no problems. But, jeez, 500 bucks? Dude, we plan on having fun, but not THAT much fun. πŸ™‚

                Reply
  13. my goodness. So, so sorry. All I can say is that I hear you. While I don’t know exactly how you feel, I have been there. MS scare and all. I was lucky the MRI ruled it out. I am very sorry. Wish there was something I could do to help

    Reply
  14. Oh Laura
    I know how it feels to feel…….
    I can’t imagine your depths
    I’m sending you light and love
    You know where to find me
    I’m just a click away
    Big hugs Laura
    As always Sheldon

    Reply
  15. vevo777

     /  March 4, 2016

    Hi there, no time to be articulate, but wanted to get this info to you…
    The MS community online doesn’t reflect that more than 50% of us who are minimally if at all affected by their MS. This needs to be said as there is way too much fear of this disease still out there among the potentially-diagnosed, unnecessarily scaring the socks off people! The discussion online is for and by the minority of patients who are having significant impact from their MS.
    I was diagnosed 27 years ago and told if I was still walking in five years I would likely always be. The tingling and numbness like you described and I presented with are considered ‘sensory’ or benign symptoms. Their presence at onset is favorable for a good prognosis. I’ve never had to use mobility aids, though sensory attacks have come and gone. Mind you, sensory stuff can feel less than ‘benign’! But for by far most of us, these symptoms do not stick around long. I take no disease modifying drugs and do not believe most of the drug co funded info on the web, which is now claiming on top of their other bs that relapsing/remitting MS like The majority of us have will turn progressive…so we better take their wonder drugs . In my experience, MS burns itself out with fewer and lesser symptoms as time goes by.

    what I’ve found I’d that reading about MS online causes me to feel like a flare is coming on, like nothing else! And I am dead serious about that. I’d be happy to help if you have questions.
    Out of time, hope it all makes some sense. These are things I wish someone had told me early on! Vivia

    Reply
    • Thank you, thank you, Vivia! That is very heartening information. Sometimes I just get worn out by the plethora of health issues that get in my way, take up my energy and make me feel like life is just getting worse.

      Your words have reassured me that this is not necessarily going to be a life altering disease. It may be, but then it may not.

      I do know people with RRMS who have had very long remissions. Yes, and reading about it does make one feel ill!

      Be well and take care–Laura

      Reply
  16. So I had an attempt at catching up and didn’t get all that far and got behind again, so now another attempt brings me to this post.

    I hope that since you wrote this you have obtained some answers and some peace of mind. I’m sorry that the folks doing the MRI were so unpleasant – you’d think that they’d be trying to be reassuring because it can be a scary thing for folks to have to go through. Maybe they too were having horrible days, or maybe someone had just crapped on them from a very great height and unfortunately they took it out on you? Which the shouldn’t have done, but sometimes emotions do get the better of us.

    ❀ and hugs to you.

    Reply
    • You are so funny, I love you. “Crapped on them from a very great height.” That certainly does happen. There are these giant vultures here, see….And they do drop their payloads, from a Very Great Height….so high that in fact you can’t see them at all. One moment you’re strolling down the street with your hands in your pockets, whistling Carolan’s Concerto, and the next, ***SPLAT***OOMPH***BEEAAAAAACH**!!!!!

      Reply

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