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Primal Feet First: In Search of Lost Time or Remembrance of Things Past

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  • One more small thing... to add before heading out for milk pick up and stuffs...

    I saw a NEW LOW on the scale again today. Another pound down.
    Is that twice in two weeks? I'd have to check but I think so...
    I'm quite frankly shocked!
    And happy.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


    • woohoo!!
      my primal journal:


      • Yay!

        Just finally read your journal--I'd caught a bit of what you've been dealing with from other threads, but now I understand a little better. I'm glad you decided to write it down somewhere, and even if the journal is mostly for you, I'm glad you've shared it.

        I'll share my love story sometime, but I figure wandering into your journal and making that my first post would probably be a bit ridiculous. So anyhow, hi!
        “If I didn't define myself for myself, I would be crunched into other people's fantasies for me and eaten alive.” --Audre Lorde

        Owly's Journal


        • I haven't posted anything in a few days... and I'm a little wishy-washy now.

          It wasn't a bad weekend but it wasn't great either.
          Friday was milk pick-up and dinner out.
          Saturday I had husband chauffeur me to Orlando to the fish and corals store to stock up on frozen fishy foods.
          The store was having a big annual sale/celebration thing and there were a LOT of people and noise so I couldn't stay as long as I usually like to and ogle all of the beautiful and wondrous reef things.
          Then we stopped on the way home to snag a few groceries. The walking around and being chatty had me at near 'episode' levels by the time we left...
          Sunday I was happy to stay home and avoid the world again, but the two days previous had left me tired and I was in 'recovery' mode.
          Monday was more of the same... as was today.

          Tropical Storm Debby came to town and has made the world windy and rainy and peaceful for me.
          Yes, I know it's giving other people headaches, but for me the wind and rain makes a lovely background of white noise and, and it keeps shrieking children, barking dogs, and roaring lawn mowers inside so I don't have to hear them.

          There is a trend here... my brain is increasingly bothered by the things that were making it crazy before the meds started to work for me. Today my dogs were breathing too loudly after coming in from a trip out to do their business during a break in the rain. Yes, dog breathing made me feel brain panic.
          I've been wearing my QC15's more and more lately.

          All of this led up to husband wanting to have a 'serious conversation' after dinner this evening.
          I deflected rather unsuccessfully.
          A girl has to try...
          It comes down to the fact that my week so far on higher dosage meds has helped some... but woefully little.
          I'm able to leave the house less and remain in any sort of decent neurological condition.
          Even at home I'm only really doing well during the hours when I'm alone, in the quiet (no TV or music), not talking, or moving about much. Once husband comes home things head down hill... my speech degrades etc.
          I have to call my doc by Thursday and let her know that the experiment is a FAIL.

          And it's time to talk about/make plans and preparations for shunt surgery.

          This will probably entail a lumbar puncture very soon while still on meds to check pressure.
          And then weaning me OFF meds to do a puncture and check to see how high my unmedicated pressure goes.
          The second part scares me.
          Before the meds I was like a stroke victim. Speech often so affected it was hard to understand. Frequent 'episodes' where my brain would just shut down... even taking a shower could induce an episode. There was nothing I could do unsupervised. I had to use a wheelchair or motorized cart for every outing. The QC15's were on my head all the time except for sleeping and bathing... and if I could have slept in them comfortably I would have. And then there was the constant confusion and disorientation. Indescribable headaches...
          I have all of these things now too... but milder.
          To go back to the full blown symptoms willingly is just not something I want to contemplate.
          So far the talk is of a Lumbar shunt, but I already have stuff going on back there due to my Stim (wiring, scaring from previous surgeries, etc)... so a cerebral shunt (VP) is also a possibility.

          Yeah... AWESOME! I love 'quality of life' discussions.
          I really think I could be OK living as a shut in more than he could be OK with it.
          I have books, and my nerdiness, and the interwebz her ... but then I forget myself and make a comment about how great it would be to visit Moab, and he just looks at me and says "How?"
          And I say, "Rent a Jeep and chauffeur me..."
          But the truth is one day being chauffeured would equal DAYS in a room avoiding/recovering...
          I end up feeling like my disability is cramping his style... but I don't just want to watch from the sidelines either.

          So yeah... they can cut my back or head or anything else they want to wide freaking open for a shot at 'better'.
          Better never really means normal... just 'better' than without.
          People forget that about doctors. They aren't magic.

          See what I did there... a duet! Just like me and lunk-head husband talkin.

          And one not... just because... it's fabulous...
          Last edited by cori93437; 06-26-2012, 12:21 AM.
          “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
          ~Friedrich Nietzsche
          And that's why I'm here eating HFLC Primal/Paleo.


          • hey Cori!

            I was going to ask if you wore sound-reducing headphones, like my daughter does in public places, but then I got the brilliant idea of googling "QC15" and saw the... headphones.

            If you restrict input even more, say, with sunglasses indoors while in public, does that help? Mine does not have high pressure - she was born with the neurological inability to run on more than two circuits, and if you give her input that would take 3 circuits or more to handle, stuff starts to spark oddly and fuses blow and all sorts of weird stuff happens (she loses speech / language, motor, cognitive, and sensory ability directly proportional to input from the world around her - that is why moving from an hour outside of Times Square to cow-country OH was sooooo good for her).
            I have a mantra that I have spouted for years... "If I eat right, I feel right. If I feel right, I exercise right. If I exercise right, I think right. If I think right, I eat right..." Phil-SC


            • I adore my QC15's... noise canceling is awesome!
              Husband and I discovered those on our own... as noises were/are definite fuse blowers.
              It really is like I have no filter... I hear all the noise all the time too loud like they are going to crash in one me.
              I can become very panic-y and have to use all of my considerable adult will power not to act out strangely sometimes. Usually the worst I do is the flapping of the hands around my ears/head and make a few frustrated noises, and then husband ushers me to a quiet spot... or it's just time to leave.

              As far as visual I do have issues with brightness, but that it easy to solve at home. I just don't turn lights on and the windows are well covered... gloomy I guess, but it works. And I wear sunglasses outside, and even inside brightly lit public buildings if I'm having a bad day.
              What gets the fuses popping more is visual stimulation. Lots of bright color and shape variation, action scenes in movies, watching traffic at all, the moving lights of traffic at night...
              I've learned to avoid this pretty well... I just don't look at things anymore.
              On a bad day that might even include not looking at people while they talk because that can be a double whammy... the sounds and movement together become surreal and weird... so I'll find a 'quiet' place, like a blank place on the floor or wall, to rest my eyes, and try to just listen... it makes people uncomfortable sometimes.

              There is also my own input stimulation... I hear myself talk so it adds to the noise level and degrades my overall senses and makes the fuses blow faster (I really like that analogy, thank you!)... so my speech degrades faster, my hearing sensitivity gets worse, and my visual issues follow suit until I reach virtual meltdown mode and have an 'episode'.

              An episode is a funny thing... By the time I feel it coming there really isn't anything that I can do for myself. If husband or maybe mother in law is nearby, very near, I can usually move enough to touch them a bit or maybe get out a weak and distorted 'hey'... If they look at me my state will be immediately recognizable... I'm staring vacuously with heavy eye lids, slumping, mouth probably open... If they talk to me I cannot fully respond... it's like the world is very far away and I can only think in some sort of weird third person structure... if they direct me and assist me I might be able to stand and walk (almost like sleep walking) to a bed to lie down... How every they move me or position me I stay that way, like a doll... like I have no will of my own. Then I sleep, it leaves me very tired. When I'm in the wheel chair and it happens I just usually ask for tissues when I 'wake up' from it as I have usually drooled a bit. I don't ever have a good clear memory of the event.

              I also used to be one of those people for whom all of school just came SO easy. I could listen, read, take notes, and answer questions (along with goof off!) all at the same time without ever skipping a beat. Learning was like breathing. NOT anymore. I can listen OR read OR write something OR try to remember the answer to a question. And it takes longer to do any of it. Multifunction learning has left the building!
              Not only did I wake up with Neurological issues due to those other things... I essentially woke up with a learning disability too.

              I have worked with children with disabilities in the past and I have to say that it was pretty shocking for m to suddenly develop some of the same, or at least similar, neurological symptoms that they had. Particularly with regard to my hearing and visual sensitivity.
              If some people only knew! Those brightly colored loud free spirited classrooms, play spaces, and such may be great for some kids... but if you put others in there it's got to be pure HELL.

              I was actually a student TA for a prof in Teaching Learners with Disabilities at the same time I was hit by this thing. I'm no longer in school trying to complete my degree... but it was a life altering experience. Even if they 'fix' me, I'm not sure I'd go back and trade it for the knowledge I gained and the lessons I helped other people learn at my college. I actually spoke on a panel and was able to get some of this stuff across to a whole load of future teachers. I think that having an adult with extreme auditory sensitivity explain how if feels... and that even as an adult it's sometimes extremely hard to control the feelings that writhe around inside of your head because of it really hit home. Because just imagine that for a kid who doesn't have 30 years of self control to help deal with it!

              I'm rambling... it's just a nerve that gets hit with passion sometimes.

              I never want anyone to feel sorry for me. It is what it is. And I think that other people and children with disabilities feel the same way.
              Don't feel sorry for me, just try to understand it and treat me like a person... ya know.
              “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
              ~Friedrich Nietzsche
              And that's why I'm here eating HFLC Primal/Paleo.


              • *Forgiveness for a parallel drawn that may sound like whining/ bragging*
                I can tolerate multiple inputs very well, to the extent that I need multiple inputs in certain cases for certain circuits to close. Don't have an excuse for it. I just know that creative or semi creative visual processes (laying out a roadway in CAD, painting, writing) require musical auditory input. Silence, crappy music, and people talking just make it worse, to the point that I can't think.
                On the other hand, I know the limit of what I can handle well. Loud sudden noises make me either hit the deck or get halfway there before I catch myself. Loud prolonged noises (concerts, idiots that talk too loudly, most movie theatres), sudden movements, and sudden changes in light or really fast moving changes tend to bring out the worst in me. If Geek or certain friends that know about it are around and start seeing the warning signs, they know I need out and can't find out. (Warning signs are hyperventilating, eyes constantly moving and not focusing on any one thing, not hearing people talking because my auditory channels have shut down, and a few others.) Whoever it is essentially has to grab me by the hand or shoulder (Geek bodily picked me up in a fireman's carry a few times when it was really bad) and lead/ propel me out of the area. One of the worst times was in a planetarium for a light show. CS Guy didn't catch it until after the fact, when I had completely shut down (eyes closed, hands over ears, scrunched as far into the seat as I could get, and repeating "I'll be fine, I'll be fine, I'll be fine" under my breath.) He finally jostled me out of it by.. y'know I don't remember, I just know he fixed it.
                Anyways, I only have an inkling of what you're going through, but that inkling makes me wish I could find some miracle cure.
                Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, steak in one hand, chocolate in the other, yelling "Holy F***, What a Ride!"
                My Latest Journal


                • Cori- Pity is about the last thing that comes to mind when I read about what's happening with you. I am very sorry that you are losing parts of yourself, but you are addressing it with such grace and elegance that "awe" is a more appropriate response than "pity." That is impressive as hell that you are reaching out to help- acting as a bridge between people that really don't have many bridges- when you could quite legitimately retreat from people if you so chose. And you're still losing weight So, no, pity is unlikely to come from anyone that knows you. Anyone else is a knucklehead and we can sit on them for you.

                  Naiad- I didn't know that needing music was actually a "thing." I'm lucky that I don't have the second half of your post, but I absolutely need music at work. I always thought it was just destracting half my brain so my whole brain didn't wander off from boredom. (When I met a girl who told me we could have music or we could talk- we couldn't have both- I was floored. I had no idea there were people that couldn't do both.)
         My blog exploring the beginning stages of learning how to homestead. With the occasional rant.

                  Originally Posted by TheFastCat: Less is more more or less

                  And now I have an Etsy store: CattailsandCalendula


                  • I find discussions of different kinds of brain-processing very interesting. My brain varies. Most of the time, I need quiet/consistent background noise (distant lawn mower, loud dishwasher, shower running) to focus well, but sometimes, especially when writing (figured this out in college but was utilizing it somewhat in high school), I need music I can sing along to in order to get work done. I can recall making playlists to get last minute (story of my educational career) papers done overnight/within an 8 hour window...or less. Sometimes it "gets me in the zone", but other times, I have difficulty speaking if there is music playing (and then I get frustrated and it makes it more difficult to get the words straight in the head, and send them to my mouth in the proper order). I can't stand music while I'm reading, it's far too distracting.

                    Watching my little brother with Down Syndrome, for which excessive auditory stimuli being overwhelming is very common, get overwhelmed by a sharp laugh (think cackling) or yelling or even choirs singing (spent a few years on the other side of the church for him, my parents had always been in the choir prior), plus my own peculiarities when it comes to auditory and visual stimuli, I think I know what these shut-down feelings are like to some degree. I think a lot if not most people encounter them to some degree in their lives, but probably don't think about it the way some of us do. My issues definitely tie in with my Executive Functioning Disorder, which I essentially must train myself to work around. Tyrosine helps with the anxiety-induced processing issues, but I'm still trying to figure out the rest.
                    Depression Lies


                    • Naiad & Dressage- I used to be 'music needy'.
                      I needed the radio on to be able to sleep for years! And I was always more comfortable at tasks, especially certain classes like Maths, Chem, etc. with a steady stream of classical going into one ear.
                      My listen time is being reduced quite a bit now.
                      I can listen to some classical still, some milder stuff like Sting. Just quietly and not for too long.
                      I'm getting very reactive in loud places like grocery stores and 'ticking'... shaking my head and making weird mouth movements.
                      Last year I couldn't listen to music at all from early August to around Jan/Feb of this year when the meds smoothed my head back out some. It was bleak! I REALLY wanted to listen to some of my favorite stuff, and I just couldn't.

                      Wonder- I think brain weirdness and differences in function/processing are pretty interesting too... always have... it becomes more frustrating than interesting at some point in the road though. When it interferes with normal function that you have to give your friends the "If she looks like she's stoking out, she's really fine... DON'T panic" talks when you try to go out with them instead of staying in the house all the time... well, it has kind of crossed that line. Thank goodness I have a lot of friends in the police, fire, EMT fields... so they usually a take it in stride. But there are still moments where someone looks horrified and goes "Are you SURE she's okay???"

                      HA! Writing that just gave me a FABULOUS idea though. I need to make some little versions of the Hitchhiker's Guide, with "the words DON'T PANIC inscribed in large friendly letters on [the] cover[s]", and a little info on the inside... mostly about not panicking!
                      “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
                      ~Friedrich Nietzsche
                      And that's why I'm here eating HFLC Primal/Paleo.


                      • On to TODAY.
                        Today was special... a mixed bag of special specialness.
                        Today I was awakened from my sleep by the buzzing of the vibrate on my cell phone because it was the official END of my 10 day period to 'do better' at a higher dosage of meds.
                        As we all know that seriously did not happen.
                        So, I have officially been punted (metaphorically of course, via my 'file') out the doors of my Neuro-Opt docs office and over to a Neuro-surgeon to begin the process of heading towards SHUNT surgery.

                        So there will be appointments, and lumbar punctures, and CT scans, and stuff to determine where The Doc wants to put the little mechanical valve in me...
                        It really is up to The Doc for things like this, I mean the actual placement.
                        Luckily, from what I've dug up and read I'm being sent to a stellar Neuro-surgeon. Always good news for this type of thing.
                        Placement could be lumbar spine with peritoneal drain tube(LP shunt), ventricular with peritoneal drain (VP shunt, in head), or ventricular with atrial drain (VAT shunt, in head).

                        At first, OUT came the drama llamas...

                        Six of them in fact, all with SASSY haircuts!

                        But that didn't last long and I was all...

                        WTF... !!!
                        I mean you guys are cute and all but I've already had my pity party and I'm OVER it.
                        Bye, cue little llamas... run on home to the Kardashians house!

                        (As a friend pointed out on my Facebook page... "Don't use that word, shunt. Women don't like that word." And thus my Shunt was dubbed, and will forever after be know as the 'Sha-jay-jay'. )

                        So with the Sha-jay-jay surgery stuff all taken care of... what's next.
                        Ahhh... a hair appointment was already scheduled for today.
                        An afternoon of FUN conveniently and serendipitously pre-scheduled on bad news day.

                        Time to get my color on!
                        And that's exactly what we did... going for the same look as last time... tealness.
                        But, we tried some new color product that is supposed to stick better... and yes it DID!
                        So... not exactly teal... more BLUE, deep blue. With hints of teal and purple.
                        It's Peacock!
                        It's AWESOME!

                        Oh... and I lost a pound this week too!
                        Wut! HoleySmokes!
                        “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
                        ~Friedrich Nietzsche
                        And that's why I'm here eating HFLC Primal/Paleo.


                        • Hey, don't know if it helps, but I know a couple of folks with shunts who have done really well with them. One of them is a guy with spina bifida who's had one for most of his life, and it's been fairly problem-free. I have all my fingers and toes crossed that yours is just as awesome.

                          Also, sha-jay-jay keeps making me giggle. A lot. My dog thinks I'm crazy.

                          And your new hair is awesome.
                          “If I didn't define myself for myself, I would be crunched into other people's fantasies for me and eaten alive.” --Audre Lorde

                          Owly's Journal


                          • I know a few kids with them, too. They are doing well. I just didn't think you wanted to hear this earlier. This is going to be fun, watching you do all the stuff again you have been denied for this long while!
                            I have a mantra that I have spouted for years... "If I eat right, I feel right. If I feel right, I exercise right. If I exercise right, I think right. If I think right, I eat right..." Phil-SC


                            • A fitting...
                              and an unreasonably... ridiculously... awesome mash-up of Rocky Horror and Ponies!

                              Cause, you know, a Sha-jay-jay isn't my first choice of "things to do"... holes in your head and/or spine can get sideways and end badly, or just need 15 revisions over the next 2-3 years. Weeee!
                              BUT... "Better" is the warm glow of a candle in the proverbial window right now, and it's mighty looking good to this street urchin.

                              Ok... the Rocky Horror Pony Show is a NEW favorite!!!

                              Ahhh... too few videos...
                              I want the WHOLE movie done in PONIES!!!
                              Last edited by cori93437; 06-29-2012, 12:41 AM.
                              “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
                              ~Friedrich Nietzsche
                              And that's why I'm here eating HFLC Primal/Paleo.


                              • I stayed up 1.5 hrs past my bedtime last night reading your journal (been busy lately and have lost track of many). While the shunt (or Sha-jay-jay - thanks for that laugh) is just the suck to have to go through, it may bring the normalcy (sorry, spelling???) you've been missing for way too long. I can really identify with much of what you are saying and what your hubby must be feeling as my hubby had to have a major spinal fusion done last year and then his hip replaced this year. Genetics and dumb luck can add up to a mess and it's not like you have a lot of choice whether or not to get on the roller coaster. I now help my hubby get dressed each day or change his clothes after work since he can not longer bend (spine is fused from ribs to pelvis). He can use dressing aids (and does) but this is time consuming and frustrating. It's just much easier to help him so that he can move on with his day. There are many other ways we've modified our life - just as you have as I read your journal. Real life can be a total bitch some days. Thanks for sharing your experiences. They not only remind us that we have much to be thankful for, but also that stuff will happen in life and that we certainly are not the only one going through it.