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.

EEG and Lyme Disease Test Results

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

I just got a call from the doctor, and the EEG results came back normal and the Lyme Disease test was negative. We immediately felt disappointed because we are so ready for a diagnosis. However, on second thought I think I’m happy that the results are what they are. Yes, I want a diagnosis. However, I do NOT want Lyme Disease, especially as late as treatment would have been after the bite. That is very terrifying stuff based on my research today. Also, I don’t know if the normal EEG rules out or confirms what the doctor’s think is wrong. I have to say that I don’t really want that either, though. Can’t it just be a brief weird illness that goes away? Does it have to be something wrong with my heart / brain? Is that too much to wish for? It certainly feels like it at this point, but I’ve been told that has been the case for two different people with the same symptoms I have.

I have about two weeks left on the heart monitor study, then I’ll meet with the doctors. Have I mentioned how impatient I am? No? Well, the phrase that best describes me is from the movie “Postcards from the Edge”, with Meryl Streep from years ago. In it, she says “Instant gratification takes *too* long”. That is me to a ‘T’.

Continuing to be grateful for my loving and supportive husband. He rocks my socks, y’all! You would NOT believe what he had to put up with yesterday morning as we tried to trigger the stutter and other severe symptoms.

Stay safe, and hug your loved ones tight!

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