Whipped and Wiped

Nah, not nearly as much fun as it sounds.

After an exhausting week of visiting with my mother, who is teetering on the brink of needing a higher level of care; and adding eight additional hours to my eventual western trajectory in order to see my son, possibly for the last time (and he was clearly taking time out from his busy life), you can imagine that I might be a leetle bit tired.

And I am.  Only I’m not just a leetle tired: I’m exhausted, beat, and laid up.

The combined stress sent me into a pain crisis of such proportions that all I could do was try to find a more comfortable position in which to writhe and moan, which didn’t help.  Nothing helped.  Now, at last, the pain has mostly blown over, but the muscle weakness that has been plaguing me is very much cramping my style.  (Haha, “cramping,” get it?  I got it.  Anywhere muscles are found, cramps also.)

I’m dropping my keys and everything else I try to hold (note to self: avoid hot liquids!)  I’m having trouble with the gas cap.  I absolutely could not manage to get the hood on my Sprinter van up today (I needed to put some Diesel Exhaust Fluid in), so I propped the fucking thing open with something else and poured the fluid in quick.  This does not bode well for my mobile lifestyle.

My neurosurgeon thinks it’s MS.  I think he’s right.  Getting in to see a proper neurologist is another story.

One problem is, it’s fucking hot on the East Coast, and it’s hot pretty much everywhere MS centers are found.  And heat is killing, if you have MS.  It’s sure killing me, I can attest.  The heat index in the part of Hell where I am currently collapsed is 102°F.  My muscles just won’t cooperate at these temperatures.

The last neurologist to whom my neurosurgeon referred me only responded to the referral letter after SIX MONTHS.  By that time I was about 2,000 miles away.  I did call several times, but they swore they hadn’t heard of me and wouldn’t offer me an appointment.  They were the only MS practice in Arizona who were taking new patients…I guess they were waiting for somebody to die and open up a spot.

My strategy now is to locate an MS treatment center through the advocacy group, secure an appointment, and go there.  Anywhere!  (Maybe Alaska?  At least it’s cool there…)

I just wish I could fly….fly, fly!

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17 Comments

  1. Oh I am so sorry you are going through such a crap time. My mother in law and my best mate have MS. I hope the test results prove otherwise or at the very least your suffering is not too much xxx

    Reply
  2. Yech, it sounds like you’re going through a perfect storm of shit. Can’t a girl get a break? I’m about done with this f’n heat nonsense too. Heat index was 115 at midday in murlind. You’re not alone in your misery, or your horizontal position. If you go to Alaska, I’m going to tie myself to your RV and let my cheeks flap in the wind while you drive. I was just thinking about Alaska winter nights when I couldn’t sleep last night. I’ve never seen so many stars in my life before then, and of course the Aurora borealis. The problem: healthcare in Alaska sucks. And very very expensive avocados.

    Reply
    • Fuck a duck, girl, I sure hope your AC is not D.C.! I wanna see dem Northern Lights one more time before the lights go down. Tonight is the Grand Finale of the Perseid Meteor Shower…but lil’ ol’ moi is probably going to be stuck on the rack in the pre-dawn hours. Maybe I’ll get to catch a shooting star when it gets dark this evening.

      Yeah, health care…illness care, rather…maybe just hop in the teleporter for a few weeks’ vacation, as long as the fuckin’ thing is air conditioned. I can’t even stand a few minutes in this blasted heat dungeon!

      Reply
  3. You know how I been feeling
    I can’t imagine the pain you are having
    My heart is yours as always
    Sending you lite and love
    The Provoker

    Reply
    • My friend, I don’t understand why, to paraphrase King David, good folks gotta suffer while the bad ones do evil all day and make merry all night long. The Breslov Hasidim have the answer but I don’t buy it. I’m too bad to be good and too good to be bad. That’s why we get Hell on earth, I guess. Whole lotta love in your direction–

      Reply
  4. Oh, Laura, it sounds like you need to rest and recoup after your visit and travels. Don’t you just love when your kids are so busy they don’t have time. I’ve experienced that too with one of my sons. And it hurts! Wishing you well sweetheart! I have a question about MS are your muscles wasting away and cramping? Also do you have nerve pain in your feet? I’m having trouble walking now? If we keep on we or going to fall apart. I hope your pain will let up soon, wish you had someone to take care of you! Hugs!

    Reply
    • Thank you, dear! I am shocked every time I look in the mirror, or down at my body. My muscles are going, going, gone. Yes, my feet cramp up, and worse, my hands! I can’t type anymore. I’m eternally grateful to the developers of the Swype keyboard, which I can use on my phone. It only takes one finger! Now I need to rig some way to hold my phone, as my hands go spastic after a short time of holding anything. I’m sure you feel the same way, this is a cruel trial for any human being. I’m sorry you’re having to walk this bumpy road too….praying for remission for all!!!

      Reply
      • I’m not sure but am suspecting I might have MS. My hands or getting terrible to. Old age ain’t for sissy’s!

        Reply
        • Yep, that’s what my old Nana used to say. And she lived to be 99, and only died because she became lactose intolerant and the damn nursing home didn’t recognize it and fed her more and more and more MILK until she died of it. Ain’t that sumpin’? God help us all.

          Even with all the scans and technology, the diagnosis of MS remains a clinical one. I just read a study that said that a huge number of people diagnosed with MS turned out not to have it, but no numbers were available for people who in fact do have it but told not. The absolute thing is that if one is having muscle atrophy, spasms, etc, SOMETHING is definitely wrong!

          Reply
  5. I’m so sorry that you are feeling awful. I realty hope that you get that appointment and can somehow gain some strength. Do take care as much as you can.

    Reply
    • Thank you so much! I did get the appt, in fact when I called today they wanted to see me on Monday, but since I am in Virginia and totally wiped out I opted for Wednesday, at the Cleveland Clinic. How’s that for quick quick? Probably won’t be fast fast relief, but as you know all too well, diagnosis is the first step to at least understanding the problem. How is your son?

      Reply
      • I’m so glad that you now have a “fast appt.” That is good news and I pray to God that you weakness, etc can be diagnosed and that it is treatable. We in blogland need you around, well and happy.

        Thanks for asking about my son. He is continues to make goo progress and will resume another round of speech about 8/19/16. His speech is about 80% of normal (my estimate). But depression waxes and wanes. He is taking Wellbutrin for that which is about the only med that doesn’t “gear him up.” 🙂

        Reply
  6. Oh my! As I am catching up on some posts I´ve missed over the summer, I realize that many of us houseless are having a hard time. Hang in there! You are in good company. And yes, I am about done with the damn heat too. Sending cool Colorado mountain air your way.

    Reply
    • 😊 Thank you! How are things going in your “neck of the woods?” Yes, being house-free is a challenge, mostly good, sometimes not so good. I gave my screen house to a completely homeless couple in Flagstaff…one less “thing” for me, a little bit of shelter for them. I can’t wait to get back to the forest.

      Reply
  7. I don’t like that you have (probably got) MS too, but I do like that with a (probable) diagnosis you at least know what you’re up against.

    Why does life get so complicated?

    Reply
    • MRI was normal, so now on to the next “rule out” diagnosis. But I’m taking a rest from all that. Nothing to do about it anyway.

      Life does get complicated, more so the older one gets, I’m afraid. It’s as if all the sh*t just keeps piling up….

      Reply

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