wide awake and a mountain of paperwork

This is a trick my body knows.  The “wake up 3 to 5 hours after you fall alseep” trick.  And I don’t mean a little tossing and turning, I mean wide the hell awake.  At 1, 2, 3, or 4 AM.    Drenched in sweat.

This week, we have a nasty weather system that’s been camped out just south of us in Northeast US.  It’s been stormy, warm, and muggy every day.  We had tornado warnings on Monday, and our neighboring state, the Olde New England Outback, had an actual legit tornado touch down.  This is Migraine Weather.  And here’s me, with my body doing this trick.  It’s practically begging for a migraine.

I have an appointment at BI-BATH and they sent me paperwork this week.  A mountain of paperwork.  It’s the size of a small phonebook.  Admittedly, some of it is directions for the tilt test prep (no food, you know in case you get all pukey with the syncope) but a very large amount of it is history and survey based.  Several questions ask about sleep and sweating.  One about poor handwriting.  I wrote “Yes!” with underlines, since this was about half way through the packet and my already shitty handwriting deteriorates the longer I write.  Now a word on that.  It’s become trendy again to bemoan poor penmanship and blame it on the internets, the computers, the mobile devices.  Let’s set the record straight.  Before there was a computer in every room, I typed at a typewriter, and not just papers but letters, and by the late 80s, journal entries.  It was just so much easier and so much more readable and so much less painful than writing.  My writing has ALWAYS been terrible.  When we met my mom’s birth mother’s family, with the various unbelievably tall aunts and their collections of sons, we found out that several of the sons were dyslexic…one with a pretty significant helping of dysgraphia.  Ah.  So there you are.  I got the latter, my sister got the former.  So I’m scribbling along on these forms and I’m like “wait, are my sleep problems all part of this autonomic bullshittery?  And my waking up drenched in sweat?  Why has no one mentioned this before?”  Then there were the “how long has this been going on” questions.  First time you passed out?  8 years old.  How old were you when your skin started changing color?  All my life.  How old when you started having greying vision and dizziness on standing?  As long as I can remember.  How long has it been difficult to stand for long periods?  Always.  Same with problems staying asleep, stopping breathing while sleeping, acting out dreams, intolerance to heat.  It’s just that over the last 10 years, it’s all gotten a lot worse on an accelerating time scale.  If this were a line graph, it would have started high for severity and slowly gone up through adolescence, wiggled around a bit in the 20s and early 30s, then shot up at about 34 with increasingly small plateaus.

What’s, in retrospect, rather mind boggling to me is that my family really didn’t seem to see the big problem with any of these things.  After I mentioned that I had passed out starting at 8 years old at school, at 9 at home, then again at 11 on a field trip, my primary care asked me “and what did the doctors say then?”  “Oh I didn’t see a doctor for that until I passed out in a hospital before a scope when I was 15, then they thought I had epilepsy because I pass out stiff.”  He did a face/palm move.  “Hey, I grew up in the 70s, you know?  People were like ‘oh that kid passed out, huh, kids….'” I said.

But seriously were they lazy?  Did Mom RN derive some pleasure from playing House MD to a kid with a mystery illness?  I knew the term “marfanoid habitus” at a very young age.  I can’t imagine she enjoyed hauling me around to various doctors for the GI stuff and then for the passing out everywhere stuff.  Scratch that, I know she didn’t.  But she knew these things weren’t ok, she’d remark on them….”Oh, look at that, livedo reticularis!” then she’d go on to explain the word meanings and their roots.

I go for my latest tilt test in two weeks.  In the meantime, I have a vacation starting tomorrow…off till July 11.  Woo!  Already got hubby to agree to go to the nail salon with me.  He really needs a manicure.  Just because my hands don’t work right doesn’t mean they can’t look good.  And I really need these toes to look less snaggly so I can bust out the open toe shoes for work now that it’s hotter than blazes here.  Taking suggestions for colors.  I went with a raspberry last time on my hands that I liked out of the bottle but that did NOT wear well.  It’s left me with a sort of candy apple hello kitty pink sheen that is just not me.

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26 Comments

  1. All these symptoms I was told last week could be caused by Chiari malformation. Really. And when I mentioned that my daughter’s MRI was normal, they said it had to be done “standing” – and that it can be very difficult to read. Interesting, eh?

    About the 70’s. I remember fingers getting caught, broken, and squished in car doors (kids howling) and the parents left it at that. Once, I slid behind our house (we lived on a hill) with my crazy carpet and I hit a huge cement block. I lost my breath and laid there for I don’t know how long until I got the strength to gather myself, climb the hill, bang on the door with my mittens. When my mom answered (I was crying) she said “what’s wrong?” and then “You’re still alive?”, and finally “Then stay outside!” When I think back, I would have been so worried for my kid – but I guess they didn’t have a clue.

    Reply
    • I’ve wondered about chiari malformation. My 2010 MRI was an open MRI, which I know now means a shitty MRI. They weren’t able to view the cerebellum. And I was like “how the hell can you read this as a normal ok MRI if you didn’t even image that part?” It would have been different if cerebellar symptoms hadn’t been what landed me an MRI in the first place.

      Oh the things we aren’t told.

      Magic carpet ride – scary but funny. I really know what you mean. I remember thinking that all my friends had had stitches but we never did. Did that mean we didn’t get cut? Nope. It meant my mom would clean and dress whatever wounds we had, then do steri-strips. I do believe she brought home some dermabond once that shit came out. On the other hand, the cats got the same treatment. I have vivid memories of shaving my cat’s neck, draining and packing an abscess, and administering daily wound care and oral antibiotics that my mom had swiped (bubblegum flavored amoxidrops….it’s what cats crave!).

      Reply
      • An open MRI? WOW. It’s unbelievable how much money is injected in healthcare when all of this has to be repeated at one time or another. In Canada, it’s awful. I think of Gen and the number of times we went for tests and all where it was all for nothing. The doctor she’s suppose to see for her neck issues is the following : http://metropolitanneurosurgery.org/practice/henderson.html I also have other information I can send you if you’d like.

        Maybe some parents were worse than others when it came to being “medically” assessed and treated. The stories (although pretty awful) can be pretty funny indeed. I laughed when I wrote mine. And in your case, even the cat (lol). Poor little thing.

      • I may look into that after this autonomic thing, thanks!

        Yes, open MRI. for the patient with claustrophobia…which is stupid since you’re still going to have it to some degree and you end up with a crappy image. Gah. Wish someone’d told me this. I picked the place based more on their hours than anything else. I’d have taken the time off work and a valium if I’d known.

  2. ANS! ANS! I developed sleep problems at 13 and then went on doxepin (the TCA) for the GI issues at 18 and slept–until I got sick and it’s like my sleep center just broke. I take all my EDS meds at night (all cause drowsiness) and Ambien CR 12.5 (brand only) and sleep, but only if it’s daytime and no REM sleep–I never dream. If I have to sleep at night it’s a nightmare. There’s a Vimeo video from the EDS conference w/the Dr. in DC describing this–overactive sympathetic/parasympathetic nervous system in the evening hrs (when I’m wide awake!) I also get horrid night sweats since getting sick, but in the winter when it’s cold and not in the summer (we have A/C, of course, but I keep it at 81 or so). I know this is just ANS crap, if that makes you feel any better.

    You’re mom sounds like Nurse Ratched–I really hope it’s OK to say that. She seems cold and uncaring like mine, but with more brains or something.

    Oh, the handwriting! Holy crap. Mine is awful–didn’t you envy those girls in the ’80s w/the perfect, bubble writing? Lol. Do you hold pens/pencils strangely? Sheep put a link somewhere in my comments (int our convo on there)–oh, the Aria post I think. It’s photos of all these signs identified by this doctor she told me about named Jaime Bravo in Chile. I didn’t think much of the hand things until you mentioned this. I hold a pen so it rests on my 4th finger (like a ring finger) with the rest of my fingers gripping the pen. I’ve done this my whole life and would have a little callous there in my writing days. Possible dexterity issues? I did OK with mechanical drafting in design school (love that script), but that’s the only exception. Food for thought. Sheep can get you that link if need be…

    Have a nice vacation and break from the crazy job. 🙂

    Reply
    • I just can’t figure out if the ANS stuff is EDS or something else. :/ I really hope it’s not nothing else, I mean it’d blow my whole “relief at a unifying diagnosis” to bits, wouldn’t it?

      Bubble letters made me laugh. Yes, I distinctly recall my classmates Lori and Barbara who had amazing bubble letters – I was desperately jealous! I’m told I hold pens and pencils too tightly. Hm, holding it so it rests on 4th finger. Just tried it. Wow. Yeah, that’s tough! I sometimes think I should just hold it in my mouth. Writing’d probably not be much worse and it might not hurt as much. ;p

      Reply
      • The migraines are the only thing that seem to not fit in my mind as I know that’s common in cervical instability/Chiari (headaches–not sure if migraine). I asked my PT about it after looking into it a while back (didn’t see myself there) and she reiterated what I had read with more nerve problems in the face/neck, etc. and even a floppy head sometimes (nice thought). That’s her experience from the non-EDS crowd. Food for thought. I think you were going to see an ANS specialist (or I’m just brain dead), so hope they can shed some light. How do we fix all this, though? Some weird meds seems to help some things. I developed the non-Sjogren’s severe dry eyes/mouth in ’06 and Klonopin cleared it up (eyes developed other issues) as it has a side-effect of causing excessive drooling in some–did I mention? Total fluke. So, I don’t take it for anxiety as it obviously doesn’t help w/that (also Rx’d for muscle spasm). That Dr. in DC uses beta blockers for the ANS sleep issues to suppress the rise in adrenaline at night. So, there is a little hope I think…

  3. Here’s the link from Sheep. I’m taking it w/a grain of salt–especially as it says Type III. It takes forever to open, but interesting. http://drbravo.site.aplus.net/ACR2011/HypermobilityStudyGroupII.pdf

    Sorry I didn’t do that earlier (yeah, just go through the 50 comments on that post). Something bad happened on my end and I’m not myself–trying to put a smiley face on w/o much luck. I’m going to post on it–probably my last, or for a while. It is VERY long and not on the normal stuff, so don’t feel obliged to read it. I hope to still comment on WP, but sometimes feel like I’m more of a nuisance w/my long comments and weird Type II that is so different. Not sure. Just thought I’d let you know what’s going on…

    Take care,
    A

    Reply
  4. The thing about holding a pen or pencil in that weird way I read somewhere has to do with lax ligaments. Gen holds hers that way and so did my dad. Also, she was told since she was very young that she was holding her pencil way too tight. Not too long ago I told her I was amazed at how she barely applies any pressure when she writes and she replied that that’s what teachers told her to do every time she complained about her fingers hurting. Sad when I think of it now that she was in pain at such an early age and none of us understood or saw anything odd about it. I mean, it’s very obvious that she doesn’t apply pressure when she writes. How is it that no teacher ever noticed that the pain was out of the ordinary?

    Reply
    • Well, if clenching your pen or pencil in a vise-like death grip is holding it strangely, then I definitely can check off that box. Boy can I sympathize with Gen. Between Sister Margaret in 1st grade and my 2nd grade teacher – the crazy old-school teacher (with just a touch of racism for good “old school” measure) – I had plenty of berating about my penmanship. After that, most of my teachers just let it go except for (strangely) my last year in college. I had an anthro prof who was all over me about my penmanship and how he could barely read my blue book test. Boo hoo. My response was “if you’d give papers instead of in class writing exams, then I’d type it and you could read it.” I felt he was intellectually lazy and so didn’t want to come up with and grade writing assignments throughout the semester, preferring to consolidate his grading to a handful of scribbly blue books 3X a semester. Why should I suffer for his laziness? I was an older student since I’d taken time off, transferred, and then finished the degree part time while working. It’s not like I was a kid who he was going to sculpt and shape and whatnot. Such a weenie!

      Reply
    • Sheep–I saw this as I always just hit “notify me of comments” due to my inability to see in the notifications box. I do have that weird grip in the photos (pen on 4th finger) like I’m clenching the pen, but I never had any pain and still don’t. Maybe my hand gets tired after awhile? Not sure as I can’t really write anymore. I have a hard hand as opposed to Gen (what’s the word) and my drafting teacher pointed that out in design school. I can’t help it, but maybe it’s b/c I don’t get pain. I had no issues w/EDS as a kid but I did w-sit (not uncommon) and now I know of the hand thing that no one else in my family does. I used to get teased about it–what’s new? I’m clueless there–the w-sitting makes much more sense, but I can’t do it anymore, which doesn’t surprise me w/Type II. The lax ligaments could be the cause for needing a tighter grip on pens (I write notes w/ those wide sharpies for my vision and still hold them strangely) and do have awful penmanship as mentioned like D. I also need to eat w/wider-handled utensils out of large or shallow bowls or I’ll be using my fingers, so all adding up here. Does anyone else have the utensil/plate issue? So sorry Gen gets pain from that. Try the hand putty! I swear my fingers stopped subluxing. 🙂

      Reply
      • Got clumsy hands now, denied it until the finger laceration trips added up. Drop things more, fumble a lot. I eat out of bowls alot too but hadn’t thought about it. I’ll have to try plates and see if I end up chasing my food off the dish.

      • Hmmm. The bowls are so weird and I thought it was just me! I also broke all my glasses in my prior life (just dropped out of my hand) and only use water bottles or my big mug for tea (yes, I use NOTHING that belongs to the motel–someone probably ran a meth lab out of my room while I was in that studio condo for a year).

        I did have parasthesia before going on doxepin, so wonder if I have some residual issues. In my case, that’s from the nerves being compressed in the huge knots all over my neck/shoulders/back. I do feel a little numb while typing. You may have the same sort of thing due to a neurological issue, who knows? Well, this is why we all need to keep comparing notes. I never had heard of the death-grip on pens thing. So odd…

      • Oh neck and shoulders. Yes. Every doctor who does an exam that includes my neck remarks in horror at how tight my neck is. Well, everyone but Dr. Tater Tot. He probably thought titanium-like tendons are normal, what with his own sturdy metal frame.

        My pen death grip was pointed out to me by one of my students with dysgraphia and severe dyslexia. He was sweet, tried to school me on how to hold a pen “right”. Didn’t work. I do think the fumbles are neuro, and either directly or indirectly related to the problems with proprioception. I’ve decided that I need a special kind of OT, where they teach me to drop things properly instead of the fumbling, flicking grasping that I do. Just yesterday I did this and ended up having to ice my wrist on account of torquing it. Just let it go, is what I need to learn. If it’s falling, it can fall. Husband says I should practice. He threw me a water bottle saying “here, DON’T catch!” lol.

      • Lol! Dr. Tatet Tot was such a turd. The first thing my newer PM&R did was feel my upper body (trying to pull my shoulders back) and with a perplexed looked said, “Tight… And who Dx’d you with fibro?”

        I’m still trying to figure out that big word you wrote and even Wiki isn’t helping. Proprioception. It sort of sounds like hand eye coordination but don’t think so. Will ask the PT! Oh, you and your big words. I always have my translator nearby like Clark Griswold when he was in the English countryside. Haha. I love those movies.

        Yes, just drop things. I sprained my wrist when I first started using the laptop so much (and the fingers joints were slipping) and that was no fun. I’ll suggest the hand putty to you, as well. I got it on Amazon for $10 and used it in PT. I use 2 lb weights for my wrists, but the hand putty tightens up all those muscles in the fingers/hands and up to the wrists if stiff enough. Might help prevent injury… Wonder if an OT can help with that?

      • What is this hand putty? i’ll have to look it up! I tried a brief round of OT. They were not super helpful, a little. I might give it another shot, maybe when I’m not working.

        I love the Vacation movies. So silly, so excellent. The German slap dance scene can still make me laugh til I cry.

        Proprioception, I probably didn’t spell it right. Perception of your own body’s position, movement, abilities to position and move. Can be relative to other body parts or other external things. Examples include misjudging my height, which I know by consistently reaching way up on tippy toe for something I really thought I could reach but that turns out to be 3 feet above me at my longest; and misjudging my width which I know by walking in to door frames. And misjudging where my head is, which I know by knocking if off stuff when I’m leaning forward like window sills and shelves. PT should know it. I picked it up from research and classes with the human perception and kinesiology people at school.

      • Huh, never heard of that but sounds like my wacky depth perception issues post-CXL and then when I had the mock scleral lenses (kitten mittens walk). Doesn’t sound like fun. 😦

        Speaking of kitten mittens, got some possible hope about MM today but no big cure, of course. She had a CT scan and is zonked from the anesthesia (poor Moush) and we’ll soon do a NEW, promising chemo pill regardless. A pill! Something new! Love when diseases get research. It doesn’t always work which is scaring me and no studies are even out as it’s off-labeled in cats, but used in dogs. Pets do very well with chemo and think she’ll be taking this for life if no toxicity issues (rare) and it works to cut off the blood supply to these tumors (a new one popped up–crap) and does something at the gene level. Will get the imaging back tomorrow, so then I’ll know if they can do surgery that probably won’t get those wide margins due to the lack of tissue in the area (just ribs due to the amputation) and will know if it has metastasized, which isn’t a big risk until a higher grade so hoping not. He kept talking months (nothing specific) which was making me nervous. I wanted to hear years, but swear the cat in his care that responded to the chemo and couldn’t do surgery was doing OK. I was so sick and tired and anxious I was just trying to absorb it all.

        Lastly, her great oncologist now thinks this was VAS: http://en.wikipedia.org/wiki/Vaccine-associated_sarcoma.
        It was suspected before. She did have vaccines in her scruff in the early yrs before they knew better and he said it can create an area (although usually it shows up at the vaccination site) that becomes prone to cancer–akin to sunburn > skin cancer later on. So, possibly a new cancer again, which may be better than a recurrence but I don’t think we’ll ever know and w/o the ability to get those wide margins like with the amputation, the chemo will be the only hope of keeping it in check I presume. Those vaccines scare the hell out of me and wish they’d figure out a better way so cats wouldn’t get this. It’s why they vaccinate in the hind legs now, which you probably know. Provided the link, nonetheless. I’ve only had her get rabies for yrs anyway. So sucky–something good probably caused all this! My story du jour (w/3 hrs of sleep so sorry for the novel).

        Yeah, the early Vacation movies were sooo good. My fav is the original when the trashy BIL (Eddie?) makes Hamburger Helper minus the hamburger and grills it. LOL! Where did slapstick go?

        Hand putty is like Play-Doh, but stiffer and made of silicone–here’s an example of the types, but I just got one on Amazon based on the strength my PT suggested (you probably would want a softer one with Type III): http://www.rehabmart.com/category/Therapy_Putty.htm

        Take care… I’m going to go to bed so early it’s amazing!

      • So much information, yes, I don’t know how you could possibly process all that. Vaccines? Really? I never heard of this and wonder now if it’s part of what Max had. He had lumps too. 😦 We had nowhere near the care your Moush is getting though. Just prednisone and appetite stimulants. I’m going to be hopeful for your girl. I’m so glad they have some new therapies to try.

        Definitely going to check out the putty!

      • Please do keep VAS in mind. Also, stay away from the 3-yr rabies vaccines (worse per all the good vets) and if Anya is indoors and away from cats, I’d skip the Feline Leukemia as that’s also more prone to cause VAS. With those 2 vaccines, they do them in separate legs. Why not all vaccines in 1 leg? Anyway, the reason they vaccinate lower on the leg is so they can amputate if it turns into VAS, so this is very real (and very freaky).

        So, other good thing here is this amazing specialty clinic. I figured Max had cancer since you didn’t mention the disease (thank you!). Poor Max. Cancer is actually rarer in cats than dogs, and if it was anywhere NEAR a vaccination site (and the tumors grew fast and large), there you go.

        To update my fellow Crazy Cat Lady (must be like how people are in Mommy and me–barf), we got a call from the doc and the CT scan shows no metastatic disease (yay) while there are 2 small tumors (one was biopsied and the other JUST showed up), they are localized–consistent with sarcomas. They are also shallow which would be very good, but the bad news is the doc is not confident we can get it all/wide margins as MM just has skin on bones there (she’s very skinny despite all the muscle, etc. that was removed). I just got a call back and we can do surgery tomorrow (Fri.–holy crap) and I will have to drop her off tonight so I can see to drive. Then, surgeon will review everything and call me at 8 am (now a morning person) and surgery will follow as the oncol. already said we’d do it. Then, she’ll stay that night to recuperate and I’ll have to pick her up Sun. night due to the driving thing. Not 2 nights in a cage away from me and with cats nearby! So, off and running to get ready (got up an noon!!! OMG–can this last?) and bringing the special diet/special litter and we’ll head over. Won’t know the rest until the pathology report comes back and then she’ll start the oral Palladia in 2 wks or so. It’s not really chemo from what I read–targeted cancer therapy in the same family as Gleevac if familiar. Please work; please work; please work. Boy, have I started a cat blog on yours here. I will work on that! Good news is I won’t miss my appts. next week and can see the counselor and stop bothering you. 🙂

      • You go right ahead and start a cat blog here. It’s the perfect place for it.

        Yes, Max had cancer. Lumps first, then GI problems, then weakness. We got that kitty set up though. Made him a special litter box, set up a drinking station that didn’t require he stoop to drink (hard to do when your muscles won’t cooperate). I feel bad for my husband, like when he hooked up with me, he got sick kitty and sick lady. Oh well, he knew what he was in for from the get go at least.

        I am thrilled to hear that Moush isn’t showing signs of metastasis. I’m less thrilled to hear that the tumors are not entirely removable. That sucks. I’m going to hope that they can do a good job though. Boy you got a lot to do. Kisses to the kitty and good luck today and during her recovery post-op.

      • Thank you and sorry about Max again. That’s the type of stuff I do for MM and your husband really is some sort of saint.

        MM went in last night, which I hated but had to do so I could drive as mentioned. I spoke with the surgeon a while ago and he thinks he can get what’s visible, but not the margins needed and the microscopic cells will be left behind. The Palladia (the new, targeted, cancer drug) is our only hope as this will regrow if it doesn’t work–don’e even want to write that. The surgeon thinks the oncologist is right and this is a new cancer, so back to the VAS theory. This surgery will be much less invasive, which is good, and we’ll get the stitches out/get the Palladia in 2 weeks or so (I better be able to get a ride) and then just wait for the biopsy results in the meantime.

        Hoping for some miracle, like it’s something else and the 1st biopsy was wrong! It is weird as the myxosarcoma was very deep and 1 large lump just popped up and the new ones (one was partially removed in the biopsy 2 wks ago) are smaller and superficial and the newest moves all over (just 2 per the CT). Also, no mucin, which is also odd. The bigger biopsy will reveal what’s really going on. So, picking up MM Sat night and she has to wear a soft lamp shade (nooo!) and no jumping onto the bed, so I’m going to do my crazy cleaning a day early (today w/my jet lag feeling) and make a safe spot on the floor with her cat pyramid (with a towel over the carpet!). Oh, I did get the bed sheet and it covers the bulk of the carpet in front of the bed where she walks–yes! Shouldn’t those insecticides just be illegal? I’m a mast cell mess from this place. You should see my legs, which are bad enough from EDS, and it happened when I stayed here the 1st time. Otherwise, I really don’t care about the motel–it’s just ghetto everywhere here and at least they fix things the same day. What a life! Yep–good enough for me! Thanks for letting me create a cat blog (really this will slow down very soon!) and listening to my babbling. If I did this on my blog, it would take 100 hrs like normal! 🙂

      • So glad the sheet covered the carpet. yes, the nasty chemicals are tough to take. We have some cleaning product at work that’s like a WMD. So awful!

        I’m hopeful for the kitty. I know, we approach hope like it’s a rare commodity, not wanting to feel the let down. But I’m going to be hopeful. I’m choosing it, I have that luxury of distance so I will hold on to it.

  1. no sweat | Final Trick

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