The State of The Muse Address

Author: Vivid Muse  //  Category: Family, Hauntings, Health, No Whining, Too Long For Twitter

Chooch and I have been at a marathon pace of giggles (and pain) the last few months, with a nice 2 week bout of illness in there. We are trying to regain balance in our lives after, essentially a three week uprooting of our schedules.

There will be many posts about Hawaii, if I haven’t said so already. I have many thoughts and house rules now, because of my love of the natural beauty they protect so well on the island of Kaua’i, if not all the islands of Hawai’i.

Our middle son T, now 17 years old, looking out over the beauty of Hawai'i as we drove through Waimea Canyon.

Our middle son T, now 17 years old, looking out over the beauty of Hawai’i as we drove through Waimea Canyon.

Until I can manage the mischief, I am doing a lot of picture posting (visuals are my best communication tool at the moment) at my Flickr site, and because I haven’t bothered my most wonderful husband to help me get this blog, Flickr, Twitter and Facebook to update. And prolly G+ since I am resigned to our future Skynet overlords.

My handle at Flickr and most other sites is Vivid Muse (with or without spaces). I do filter pix of our kids and of the minor children of friends. You have to ask for me to not let a solo photo of your child be public, it truly is a big exception. If anyone finds that I’ve slipped, please message me and I’ll correct asap.

In case you haven’t seen elsewhere, I stopped all assistance to Ditched by Kate in April of last year. I finally admitted that I simply was not physically or mentally able to be representative of their image, so I resigned. Chooch also left the band, months later, for unrelated reasons. Our friendships with the band remain, which was a goal from the very beginning. I’m very grateful that’s happened. I will never forget my part of DBKhaos and wish them all the best, sincerely.

I have so many things to express, but am needing to organize them. The biggest thing I have to say is about the Charity Cancer Anthology, (title TBD) and my inability to publish it.

I have been battling ever-worsening invisible (mostly) chronic pain for four years now. There are different aspects and associated issues, but basically, my body is hindered by pain, and my mind is hindered by fog and long periods of inability to focus, remember and/or communicate coherently. I am not the person to do this job the way it deserves to be done. However, it must happen. For my Mother’s piece and the other pieces that will be included have amazing messages to share. And because cancer will not stop, neither can those that fight it.

Because my Health Blahs, as I call them, are chronic and not alleviating, I must assume that I must find someone willing to take this on. Chooch is unable to do it for work schedule and personal reasons of his own. Cancer is a common word in our lives, suffice it to say. Too soon, doesn’t begin to cover it.

I will be reaching out and seeking advice on getting someone else to re-promote, take additional submissions, edit, publish and market the book along with Chooch. I have stipulations, because of the excruciating personal nature of this publication, but he will be the one in charge of those.

Please contact Chooch or I at Viv@VividMuseCreations.com if you have suggestions, criticisms, or services you’d like to donate, since this is a non-profit charity book, and also if you have services that you think will help us spread the word far and wide to raise the greatest funds possible to wish this evil disease into the cornfield.

My deepest and most sincere apologies to those that in some case have been waiting years for this anthology to be published. It is in your honor that I show my gratitude with this public apology and embarrassing level of detail of by failings. Please direct any response to Viv@VividMuseCreations.com with ideas, criticisms, requests to add more selections, alter/add to your current submission or any other matter.

Please know that I’ve let myself down more than I’ve let anyone else down. In moving out of cocoon-mode, things have to be completed this year. Nothing that lingers because of fear/embarrassment/pain will see the dawn of 2015. This is my goal. (Warning: As part of my typical foolishness, I will be channeling Mabel Pines from *cough*Disney’s*cough* animated series, “Gravity Falls,” by embracing awkward and embarrassing things and putting them in my rearview mirror. I’m human. I make mistakes. I’m moving on. Feel free to join me.)

As a result, I have something similar to Write or Die in mind for this blog. I have to schedule the post when I begin writing it. I have 1 to 4 hours to hone it, since I get lost in Fibromyalgia Fog frequently or migraines take me down. If necessary, that means posting before proofing. (I can’t wait to see if I screw that one up. Future half sentences ahead!)

And I’m tired of looking at super short thoughts that I’ve captured that I feel like I have to expand on into a more coherent post. I am rarely coherent. If you know me in real life, you know this already. So, my misfires are a part of my “voice” or POV. (We’ll see how long this lasts. I’m coming off a great weekend.)

I think this will help with the 70 or so pieces of thought and 4 journals full of thoughts. Lose all my baggage and keep our beloveds and keep our human and material treasures close.

Oh and we my do a new Into the Blender Podcast, soon-ish. We did a google hangout on Nov 1, 2013, our 10th and 11th anniversaries, but the audio isn’t up yet. We will hopefully be able to do an occasional episode the same as PG Holyfield and Chooch produce our SpecFicMedia.com shows. Record a live show in Google+, while broadcasting live to YouTube channel and then strip out the audio and post in our podcast feed.

And because of another kind nudge, this time from Dave Slusher, I’ll attempt to talk into a microphone soon for my stale, sporadic at best Girl’s Rules Podcast. I have little control over whether or not I’m physically able, but I will try.

Maybe something will come of it that others can relate to and also help with my successful-to-date fight against isolation.

Happy New Year, kittens.
*rooster crow*

Vivid Mommy

Author: Vivid Muse  //  Category: Breast Cancer, Chooch, Dizzy, Dizzy, Family, Friends, Mom, No Whining, Too Long For Twitter, Vestibular Migraine

Just like millions of other people, Mother’s Day is a rough one for me because my mother is deceased. I’m also a mom, which makes it a very bittersweet day. When you add that this year, for what I recall as the first time in 20 years, I won’t see any of our kids, it ensured that I’d be avoiding social media and anywhere that I’d be inundated with the message that I don’t want to be reminded of. Yep, I’m bitter. Then I realized I hadn’t checked in on friends since yesterday and decided to check Twitter and make sure all was well.

As expected, there was a deluge of Mother’s Day wishes being exchanged. One that really touched me was by friend and author Mur Lafferty: “PT has made me toast and yogurt and a can of selzer and brought it to me in bed. “i didn’t know how to make coffee.” I nearly cried.”

On the other end of the spectrum, brand new dad Cheyenne Wright posted “A bit out of sorts. This is the first chance I’ve had to celebrate a Mothers Day in 18 years.”

That one got me right in my vulnerable spot. I closed Twitter as I realized my dizziness had kicked in with an anxiety attack and now-standard accompanying trembles. It was not at all surprising if you understand my current health situation, and I cursed myself for logging in. My husband unwittingly helped my through the brunt of the symptoms (Hey Chooch, this is why I was upset earlier), but I still feel the need to share something about my Mom today. I don’t do this easily because:

  1. I’ve been told in extremely loving ways that I need to try and move on from grieving her as I do, out of concern that it may be unhealthy;
  2. I’ve been accused of talking about my Mom and/or my health issues to garner sympathy for some unknown purpose, either witnessed by me or as reported by others;
  3. I’m not entirely sure Mom would approve of what I want to share.

To those from item 1, I say a sincere thank you for your concern. But my highly remarkable Mom left a massive hole in my world, and it is simply taking a long time for me to heal. In some ways, I never will because I will always miss her. That’s simply the price of having a jewel like her for a Mom, and I’m willing to pay it. Know that I’m making progress and doing the best that I can, and you should feel free to delete any message, change the subject, or ignore any posts. I expect nothing from you when the need arises for me to talk about her.

To those from item 2, I say without hesitation ~ kiss my ass. You don’t understand me now and never did, regardless of what you may believe. Yes, yes, I know, “Never feed a troll,” as it only encourages them. But I’m tired of not defending myself when I’m being vilified and disrespected to those I care about. So I’m using this post to “balls up” and remind myself that my Mom didn’t raise me to be a doormat. In fact, she specifically counseled me on the need to stand up to some of the aforementioned “item 2” people. I feel no guilt over including this paragraph, because they will only be identified to themselves and to those that they’ve trash talked about me. It’s unlikely that most of them will ever read this, except for some that may be looking for ammunition, but this is my little corner of the internet and I’m tired of censoring myself when others won’t.

And for item 3, I mean that Mom would probably not like this picture because she’s not wearing makeup. She was intensely self-conscious and hid from cameras most of my life. I’m posting it anyways, because later in life she embraced her silly side in fantastic fashion and stopped running from cameras. Also, it’s one of my very favorite pictures of her, as it documents a very special moment in our lives.

The tiny hair clips were part of her 60th birthday gift from me. I had gotten a basket and decorated it with silk flowers and ribbons and filled it with brightly colored hair clips, ponytail holders, barrettes, hair bands and a tiara. I wanted to celebrate that the chemo for her newly diagnosed breast cancer wouldn’t make her hair fall out like it did when she battled it in ’91, and it was insanely fun (and cathartic) to pick them out in the girl/teen accessory section.

When we realized that some of the little clips matched her vibrantly colored shirt, my sister put her hair in the little twists that my then-early-teenaged nieces were known to wear for a time, and we couldn’t resist snapping a picture of the spontaneous hairstyle and her reaction to it. A few months later her chemo was changed because it wasn’t working, and her hair promptly fell out. Two and a half years later she was gone.

But I present you with photographic evidence that my Mom was highly remarkable. Even when faced for a second time with the same life-threatening disease that she watched eat away at her mother and grandmother until there was nothing left of them, she was still able to laugh. And when presented with a gift that in hindsight may have unkindly brought the cancer back to the forefront of her mind, she giggled and was delightfully silly. As only she could be.

I won’t exaggerate and say it was Great Bravery or Courage documented in this moment, because it wasn’t. It was just a silly and spontaneous moment. And damned if it’s not one of the most treasured moments of my life. Isn’t she glorious?
Funnest Mom Evah!

This post is written to honor my Mom, Nat, Jaimie, Terry and Zach ~ five people who are no longer with us that are at the forefront of my mind. The first three I miss terribly. The fourth and fifth I never met, but because of their impact on people that I dearly love, I desperately wish I had. You are missed.

Going Off Preventative Meds

Author: Vivid Muse  //  Category: Chooch, Dizzy, Health, No Whining

I was all ready to go into the doctor’s appointment and fight for his approval in going off the two preventative medications that I’m currently on to combat my vestibular migraines (dizziness, migraines, fatigue, occasional nausea when the dizziness is extreme). I was actually disappointed when he didn’t argue. It seems we’ve exhausted the meds I can take that won’t wreak havoc on other minor health issues I have. I think he was disappointed as well, because he wasn’t able to give me relief after all this time. I actually felt kinda bad by the end of it, as if I were firing him which isn’t the case. I still feel like he’s done and is doing everything possible. I haven’t completely decided if I’ll return to him or seek a new neurologist of this continues. I’ll likely do both.

We worked out a plan for the next three months: I’m to wean off one medication over the next 2 weeks. Then I start to wean down off the other over a couple weeks. Then we just wait and see what happens. It could take a month or so from that point for all that stuff to be out of my system and to be able to get a clear baseline as things stand now.

If it’s bad, I can go back and try something else, but for now I’ve got an appointment in February to discuss the results. This allows three months to wean down and “normalize”. I’ve also got a non-prescription route I can try before returning to him. And there’s acupuncture, which I’m leery of but know folks that have had great results.

For for those keeping score, this change will remove two medications for a total of five pills a day. I will hopefully be able to drop 3 other daily pills and an every-other-day pill that are needed for side effects. *crossing fingers*

I’m really excited to see if this change also lifts the persistent brain fog or if that is part of the condition or whatever it is that I have. I’m really tired of feeling stupid for not being able to remember things or make simple mental maneuvers.

And yes, I’m nervous about what I’ll be dealing with when the meds are out of my system. As I told my doctor, it’s possible that the medications are tremendously helpful and I just don’t know it. While I’m hopeful that the condition resolved itself already and that it’s the pills (with listed side effects of dizziness and headaches) making me feel so crappy, I know that it’s more likely that they are not. But it’s been a year, and I feel I have to try, especially since nothing has allowed life to resume normally.

One interesting tidbit – interesting to me, at least: One of the things the doc always does is a test of my balance, motor skills, eye movements, etc.,. It’s simply done in the room, and I was pretty proud that I was able to do everything with coordination, including standing still with my eyes closed. I felt like I stood stock still, like a soldier at attention. Chooch informed me later that this was not so. Apparently, I was swaying dramatically. I didn’t even feel it. Now I’m left to wonder how much my body automatically compensates for the dizziness after all this time, and how accustomed I’ve become that I don’t even notice something like swaying. Crazy.

Review of "Healthy Bread in Five Minutes a Day…"

Author: Vivid Muse  //  Category: Books, Chooch, Cooking, Firsts, Health, Soulful

I’m finally getting around to writing a review of the book I used to make my first ever pizza dough in my “Firsts” series of posts, most of them during Labor Day weekend.

A weekly meal routines we’ve fallen into over the last eight or so months is “homemade” pizza on Friday nights.  I would purchase a whole wheat pizza shell (Boboli-type) and we would top them ourselves with our favorites. It’s healthier (whole wheat) and much cheaper this way, since the shells run about $5 and the results are individualized.

As is my usual luck when I find something I love, the store next door stopped selling the whole wheat pizza shells about two months ago. I wanted an alternative other than buying at a store I have to drive to, so I started looking at whole wheat pizza dough recipes and although not terribly difficult, I just … didn’t wanna…

Then I came across this book while zipping around in Amazon and was immediately hooked. It’s title “Artisan Bread in Five Minutes a Day: The Discovery That Revolutionizes Home Baking” by Jeff Hertzberg and Zoe Francois. I read the product description and was curious as to whether or not any whole grain recipes were included. Then I noticed another book by the same authors Healthy Bread in Five Minutes a Day: 100 New Recipes Featuring Whole Grains, Fruits, Vegetables, and Gluten-Free Ingredients. The description there really had me excited, so I put the book on reserve at my library and checked it out the next day.

I opened the book to skim it while I was still in the library parking lot, and decided to grab the few items I would need to make my first multi-loaf batch. I’m unable to afford all the recommended tools (pizza peal, baking stone, 5 qt container with lid) for a whimsical attempt, so I instead used their suggested substitutions. Very quickly I had my dough mixed and set aside for the two hours as instructed, and later that night used some of it to make whole wheat pizza dough. It was delicious, although the texture was a bit gummy.

Undeterred, I attempted two or three loaves from the remaining dough and was happy with the taste but not texture. Naughty Bear loved it and ate several slices, but neither Chooch nor I really dug in and I ended up tossing it.  (As Ramona says, “Bread makes you fat,” so I only eat REALLY tasty bread.)

I hit the troubleshooting chapter, which is pretty extensive, and found that different brands of whole wheat flour can cause variation in the results. I followed the recommendations and made another batch, resulting in much better pizza crusts (Friday to Friday). Due to insanity here, I didn’t get another loaf made from that batch, but am entirely sure it was improved based on the difference between the two pizza batches.

As for the process, it’s different from traditional bread making. Annnnd lookit, I’m not going to go into a huge explanation of the science. If you know me, you know my opinion of science (It’s great! But better left in someone else’s hands.). And you are correct if you guess that I read it all, but didn’t bother retaining much of why the system works. But even I can explain the system itself:

You make one huge wad of dough by quickly and simply mixing dry ingredients with wet ingredients in a 5 quart or larger bowl/container/whatevs. Then you park it loosely covered somewhere that your dog/kids/drunk uncle won’t knock it about. After two hours, during which time it has miraculously risen, you move it into the fridge still loosely covered. Now, depending on which dough you mix, it will happily reside in the fridge for up to 5 to 14 days, ready for your use. I have not tested the outer limit on that, but after a little over a week on one batch of the 14 day Master Recipe I question the claim.

Once it’s been refrigerated for … a while (who can remember, that’s what recipe books are for) you use a serrated knife to chop off a chunk and follow the provided steps to make a loaf of artisan dough, pizza crust, baguette, cinnamon rolls, or whatevs. The loaves I’ve made require an additional rising period of 90 minutes or so, but the pizza crust is rolled out and baked immediately.

To date, I’ve made the Master Recipe for pizza crusts and “artisan loaves” and the Soft Whole Wheat Sandwich Bread Recipe with a very tasty loaf. I’m testing it out for pizza crust tonight to see if we like it better than the Master Recipe. This will be my last test batch, and if successful I’ll buy the book, pizza peel and baking stone (I’m already pretty happy with my container situation).

I should warn you that this process will take up a big chunk of your fridge space. You should really think this part through before making any investment. You may be able to get around this if you cut the recipes in half and use smaller containers.

Also, mixing the dough is a bit messy if you don’t use a 14-cup food processor or other machine (which I don’t have), but it’s still extremely quick and easy. I mix and store it in the same bowl, so the only thing I have to wash is measuring cups, a whisk and a wooden spoon. And let’s not forget, it’s bread making we’re talking about here. You’re supposed to get messy!

As for the expense, it’s waaaaay cheaper than a bread machine and I’ve essentially already paid for the book with the savings from 4 pizza crusts (I’m already counting the one I’m making tonight). The other items? We’ll call those an investment for the home.

Mom Always Said I Was Special…

Author: Vivid Muse  //  Category: Chooch, Dizzy, Health

… and now I have the gear to prove it!

Chooch and I got up bright and early this morning to get started on my 24 hour monitoring EEG. I have to wear the recording devices on my left hip, since the right is already taken up with the heart monitor recorder. When I’m having vertigo/migraine/nausea/whatever I have to hit a button on each. The EEG recorder marks when the symptom occurs and I keep a journal detailing what symptoms I was experiencing. The heart monitor recorder actually triggers a recording of my vitals for about 90 seconds after I hit the button.

The first time I had a dizzy spell, I froze and went for both buttons and was instantly reminded of the Old West, when a gunfighter would go for both holsters in a gunfight. Hence, the silly pose with my strangely intense expression.

If only I had the necessary pieces (and skill), I think I could fashion this into and interesting photo. If the sensors were sticking straight out, and the wires were copper… If I had some copper foil to wrap the ‘umbilical’ wrapped jumble of wires that comes out from the back of my head, down my shirt and connects to the device… Ah, well. The lost theatrical opportunity is just one more regret in all of this.

Luckily, I’ve had several dizzy spells today. They have been minor and brief, but it’s all data for the diagnosis so I’m not complaining! And in case you are wondering, yes. It’s extremely itchy where each electrode is ‘cemented’ to my scalp. I’m sure I’ll be in heaven once I get it taken off and wash all the gritty cement off my head. I’m not complaining, mind you! I know how lucky I am to have good insurance, a thoroughly intrigued set of doctors, a patient boss and lovingly supportive husband.

Cooties, Stress Test and Frustration

Author: Vivid Muse  //  Category: Chooch, Dizzy, Health

Yesterday was the long awaited cardio treadmill stress test, which my cardiologist ordered because of my tilt table test excitement.  Poor Chooch had to take the day off and drive me, which worked out fine for him since he was still feeling the effects of the cooties we picked up over last weekend. Luckily, I was feeling vastly improved in time for the stress test.

I had a 7 am appointment at the hospital, and they took me back almost immediately to begin the test. I was sad that they wouldn’t allow Chooch to come back, as it turned out I got to see some cool stuff. They hooked me up with electrodes all over my chest. This was unpleasant for many reasons, but mainly because they used a scouring pad type thing where the attached them and my sensitive skin was NOT amused. Have I mentioned that I’m a wuss? Well, I am.

All sorts of readings were taken: EKG, pulse, blood pressure and then a different tech came in and this is where I wish Chooch had been there with his phone’s video camera. The tech used what seemed to me to be a sonogram device and I got to watch my heart in action. I didn’t think to ask what it was, but it was the same type of image I saw of my babies during sonograms. I was mesmerized as he pointed out different parts of MY heart, showing MY valves opening and closing, measuring pressure and who knows what else. Dude, it was amazing. I asked him if everything looked normal, and he said to his eyes everything was working as it should and he saw nothing abnormal in my heart, with the usual disclaimers. This was a big relief since I have inherited a horrific genetic heart disease history on my dad’s side of the family.

After instruction, I was put on the treadmill at a steep incline and a slow pace. This was heavenly for me, since I’ve had to give up my rigorous training for 5k races in October and have been unable or afraid to exercise on my own due to the severe vertigo. Every time I’ve tried to exercise, I’ve had to stop and the sedentary lifestyle I’m now stuck in has been a major source of depression. They increased the pace over time, monitoring everything and I actually had an enjoyable time with the three nurse/technicians in the room. We talked about movies, actors (Denzel! /swoon), financial horrors for the medically uninsured, and the coming snow apocalypse. At the max, the pace made it difficult for me to talk as I was pushed to the necessary HR limit for the test. I was able to do the entire test as they needed for maximum data to be attained, and I was dizzy but exhilarated. It made my craving for regular exercise excruciating, and I’m more jazzed than ever to get back to work with my trainer and to hit the track again.  Someday.

I had a heinous twenty minute coughing fit after the test, and most of my cootie symptoms returned from earlier in the week. Small price to pay, as I’m having the always-enjoyable-to-no-one-but-me soreness in my calves after having pushed myself to the max. I don’t have any real news for now, since I don’t expect to meet with the cardiologist until after the thirty day heart monitor study is complete in about two more weeks.

Afterward, Chooch and I had breakfast and ran some errands to avoid leaving the house during the forecasted snow storm. After returning home, I was able to find a walk-in clinic to do the Lyme disease blood test ordered by my doctor. This should have come earlier, to be truthful. I embarrassingly forgot about a tick that I pulled off my back sometime in the late summer/early fall of 2009. I didn’t even think about it until after the cardiologist asked if the test had been run yet, but when I did remember my doctor immediately ordered it. If I end up having Lyme disease this whole time, I’m going to feel pretty stupid. It’s the sort of thing that I would have never forgotten if I had found one on my kids. Self awareness FAIL.

Early last night I became extremely frustrated due to my inability to drive. I found a knitting project that I wanted to try, a quick knit scarf, but I could not drive to the craft store for the necessary supplies. It was clear that Chooch wasn’t feeling well so I didn’t ask him to go out for a third time, and instead hit Amazon to buy them since we have the prime shipping membership. They didn’t have what I needed available for the free shipping and my frustration grew exponentially.

It’s a small disappointment, and I truly understand that. But I had spent the day going over the expenses since my weird illness started and working on our budget, and the sacrifices we’ve had to make because of it. Trust that I know how lucky I am that I’ve had so many terrible diseases ruled out. I give thanks every day for that and for having a loving and patient husband that is willing to help me through this hopefully brief time. But dammit, I was once again thwarted on a very simple thing. Not a toy, or a video game but rather crafting supplies to make a mangled and poorly knit scarf for a loved one.  I know what you’re thinking: “Suck it up, cupcake.”, and you’re right. But I also feel completely justified in my frustration on this point, and until you lose the ability to drive for 2+ months you really don’t know how useless it makes you feel. I can’t work, I can’t do the needed household repairs, and I have to ask people to drive me everywhere. It’s the tantamount neediness that I despise and here I am in the thick of it.

There, I feel better for having whined. Thanks to those of you that tolerated it for so long.

In other news, I found out that the monitor I am wearing is not a ‘halter monitor’ as we thought the doctor said, which led me to believe it would be a cumbersome vest-like device.  It is instead a Holter monitor. Spelling is where it’s at, eh kittens? It is formally described as an ambulatory electrocardiography device, and I posted a picture in a previous post. It’s teensy and causes only a mild inconvenience due to the wires and the skin reaction I’m having to the little skin tab thingies.

I’m not looking forward to Monday, since it seems I have to do the 24 hour EEG monitoring. I’ll have electrodes stuck to my head, be given another monitor and sent home until I return 24 hours later to have it all removed. Yes, there will be pictures. After all, if you can’t laugh at yourself then you are taking yourself FAR too seriously and life is WAY too short for that.

The Heart Monitor Study Begins

Author: chooch  //  Category: Dizzy, Health

I received the heart monitor on Thursday night, but due to having mild dizziness I didn’t fire it up until Friday morning. I still had symptoms, but didn’t want to delay the start any longer. I should have started with a baseline reading, but again, the dizziness prevented that. I did provide recordings with those symptoms, and on Sunday morning was finally clear enough to send a baseline.

As you can see by the photo, it’s teensy and not cumbersome at all.  I connect the two electrodes as directed, and then plug in the monitor and clip it to my waistband. I have the wires all under my clothing, so I don’t get caught on things. For size comparison, those are AAA batteries in the box.

Ironically, the monitor seems to be the magic cure for the dizziness since I’ve had very light or no symptoms since I attached it. At this point, I’m actually drinking caffeinated sodas at this point to try and trigger stronger dizziness. I figure I may as well try and get as much data as possible for the doctors to review, and since I’m stuck at home it doesn’t matter if my symptoms are really bad or not.

The improvement in my symptoms also leads me to believe that the first migraine medication they had prescribed for me was causing carm and providing no relief. All my symptoms were pretty severe when I was on the full dosage, and since the last week of the gradual cessation I’ve been feeling much better by comparison. The migraines themselves were so intense that I was completely debilitated. So much so that I occasionally forget that I still HAVE the symptoms and have to remind myself not to push myself too far. Again, trying to replicate that now for more hard data for the doctors.

I have an EEG on Saturday morning. We will be trying very hard to trigger symptoms for the 30 minute test. If I don’t, I will have to have electrodes cemented to my scalp for 24 hour monitoring. That cement is really itchy, just in 20 minutes. I may lose my mind if I have to do it for 24 hours…

I’m so grateful to my husband, friends and family for all the kind and supportive words and gestures. I’m embarrassed by the attention and frustrated at the reason for it, but it truly does mean so much.

Health update following last appointment

Author: Vivid Muse  //  Category: Dizzy, Health

Posted in Facebook on January 14, 2009

Neurologist(Neuro) had not yet met with the cardiologist (Cardio), so is not starting me on any new treatment meds, save for something that should break the migraine when it hits, instead of taking excedrin since the Cardio wants me to minimize that.

Neurologist feels that they are close to sorting this out, that the tests the Cardio and he have ordered will nail this down once an for all. He has ordered an EEG and and a 24 hour monitoring EEG, since it will only really reveal anything if I have an episode Chooch and I are already figuring out what triggers to use to ensure I have one while being monitored. (Chooch said he would tell me he was leaving me. Funny guy, huh? I told him next time he makes that joke he better be wearing a cup. He didn’t think it was funny, but the receptionists sure did.)

Both the Neuro and Cardio feel that the abnormal tilt table test, which apparently approximately 70% of the population fails, is not the total problem, but that I definitely am dealing with neurocardiologic issues and believe they will be able to give me relief once the monitoring is done. They don’t want to give any possible solutions until after the monitoring concludes, since that will definitely skew the results and they want the fullest range of unfiltered information.

The Neuro also put me on ‘off work status’, which may escalate tension at work. They have been understanding so far, and if they believe what the Neuro is telling me then another month of testing should have us nailed down and ready for treatment. If they get nervous at the lack of an ‘until ____’ date, it could get interesting since I am still technically on probationary period. The doctor made it very clear that it’s not safe for me to drive, even if I’m feeling well since the symptoms come on without warning and usually hit pretty strong rather than easing in. The fun continues, but at least it appears that MS is no longer a concern. I call that a MAJOR win!

Other than all that, I am doing okay. I have plenty of stationary things to do to keep me occupied, and our puppy keeps me company during the day.

Spinny Viv is spinny

Author: Vivid Muse  //  Category: Dizzy, Health, Work

Posted in Facebook on January 7, 2009

Since the last week of October, I’ve been dealing with an odd collection of health issues, and they’ve caused me to miss all but four days of work. My bosses have been understanding so far, but I don’t know how long this will last. I’ve been anxiously seeking answers, and here is the latest info.

Before Tuesday’s tilt table test, administered at the Cardiac wing of the hospital, I had the following: Brain MRI and CT Scans (tumors and hemorrhages ruled out), blood work for a myriad of things (including lupus), and multiple various auditory/visual tests for MS among other things. All had come back normal until Tuesday.

The tilt table test basically tries to push your body to recreate the symptoms and see how your heart behaves. Strapped to a table, I was positioned at a 70 degree angle while my heart rate and blood pressure were constantly monitored by nurse and cardiologist. After a period of time, they applied pressure to my carotid artery and then after that placed a nitro tablet under my tongue. Yes, nitro. Big badda boom.

Although the dizziness and migraine symptoms were not successfully recreated, I did pass out. Let me say this, it’s interesting to be awakened simultaneously wondering where you are and who’s the crazy woman poking you in the chest and calling your name. I swear, I think she bruised my sternum!

This showed a different abnormality, although the doctor that was present led us to believe that we had now the test result we needed to diagnose and treat all my ailments he was mistaken. They can treat the syncope (fainting) if deemed necessary (which it’s not), but this hasn’t helped with everything else. It appears that it is still good news, as there doesn’t seem to be a major malfunction with my heart. I was however, devastated as I thought we were walking out with a diagnosis and treatment. I was already planning my return to work and exercise and well, normal life. Major bummer.

As it stands my cardiologist will work with my neurologist on all the info