I finally decided against trying to walk the 5k in the Richmond Susan G. Komen Race for the Cure. Having done the race in past years, I know that I’m screwed if something happens because there’s no easy way to get assistance back to the car.
I’m instead doing the stay at home version, and raising donations in my Mother’s name. If you would like to make a tax deductible contribution, please contact me at vivmuse@gmail.com and I’ll send you the link to the donation site.
My goal is $500 dollars, which I’ve exceeded in previous years. I’m hoping that even in this cash-strapped year that I’ll be able to meet my goal.
Also, if you know Greg and/or Carrie Seidman, please take a moment to pray, reflect, or whatever you are comfortable with today as they are at the hospital for the delivery of their first child. I know I’m sending my blessings for a safe and swift delivery and the health of the baby and mother. This will be one cool kid if her parents are any indication of what she’ll be like.
Happy Earth Day, all! Show your Mother some love today. Whether familial or planetary, she’s the only one you’ve got.
The vestibular rehabilitation (physical therapy for people with vestibular migraines) started the end of March, and the protocol is meant to desensitize my body to the dizziness/migraines by triggering the strongest possible symptoms and essentially acclimating myself to them. It will allow me to move around the world in a normal fashion. I hold out great hopes, since this and the medication appear to be my only options for treatment. So far, the exercises are effective in making me extremely dizzy, to the point of being nauseous and migraine-y afterward. So yay, I’m doing it right!
Sadly, after three weeks I’m not seeing much of a difference in the dizziness frequency, intensity or duration. Talking with the physical therapist on Monday, I was able to say that migraines are slightly lessened in frequency in the last week. Realistically, I’ve seen that fluctuate before and am cautiously optimistic at best. I return to the neurologist on Monday to discuss progress and possible changes to treatment.
My favorite part is that I’m moving again, and I’ve missed that more than I can express. My favorite medical related experience since this started was the cardiac treadmill stress test, where I had to work my way up to a steady run with three medical technicians mere feet from me in case I lost my balance. I was in a safe environment to run, and I ran my ass off to sheer exhilaration. It was invigorating, even though I was extremely sick the rest of the day.
Up until the vestibular migraines hit, I was training for the Thanksgiving 5k race, and was up to running for 20 minute spans without slowing my pace. I am very far from this now, but will get there again. I have to. I’ve started going with Chooch on his morning walks with Kaylee, and love it to pieces. Yes, I’m extremely dizzy after the short 1.5 or so mile walk. But I’m MOVING. And I feel safe because he’s right there with me. I’ve taken one neighborhood walk by myself, and it was a bit longer. I don’t know if I’ll do that again until the dizziness is under better control, as I was very anxious that something would happen. And anxiety makes my symptoms much worse. See the conundrum?
I also love the walks because it’s just us. No twitter, no phone calls, no computer, and only Kaylee to distract us. *Squirrel!* Whether we talk or not, I just love it. We already do a lot together, which is normal because he’s my best friend, but I truly treasure this time with him.
I would love to be able to do my 5k route in the hopes of being able to do the upcoming Race for the Cure, but that would mean getting up even earlier since we walk before he goes to work. We haven’t registered for it yet since I’m so wobbly and never know from one day to the next what I’m physically capable of. We’ve participated in the Richmond race for the last 2 years, and I did countless races in DC in previous years (always as a walker). I really hate to miss it this year, especially since I know two people that are currently fighting for their lives from this horrific and demoralizing disease. It already took my Mother, Grandmother and Great Grandmother and I take it as a personal challenge to walk for all of them.
On a related note, a very dear friend today was saying that as bad as things are for him, he’s glad he doesn’t have to deal with my medical issues. I on the other hand, thank God every day that I’m not fighting for my life. I’ll take the diagnosis I was given GLADLY and with great gratitude.
I’m putting the decision on the race on hold until the weekend, when we will hopefully walk the distance to see how I do. *fingers crossed*
This is not a comprehensive report after exhaustive research. This is simply a short note after a very quick run through the grocery store for a few needed items. Most of what I was hunting was fresh produce, so no worries about high fructose corn syrup (HFCS) there. The new push for seeking them is based on the results of a recent study released by Princeton University. You folks are smart enough to decide for yourself what it means, so rather than dumbing it down into my terminology I’ll simply link it for your perusal.
A walk down the condiment aisle was where the dread came in, especially after a conversation with my good friend Andrea last week on her experience at the grocery store. Her family is making the switch to HFCS-free life, and while I’m not clearing out my pantry I am trying to re-stock without them. I’ve long believed in the dangers of HFCS and partially hydrogenated oils and have avoided what I thought were the big culprits for years.
After her recent experiences, I realize how far HFCS has infiltrated my pantry and fridge when I wasn’t paying attention. Condiments are filled with them, and Andrea recently reported that every variety of bread in her grocery store contained it. I rarely eat bread, but my family enjoys it. We never buy white, and only go for whole grain but I was braced for pain when I checked the labels of my favorite bread items.
I’m happy to report that all three “Nature’s Own” bread varieties I checked at my local store are HFCS-Free, and even tout this with a banner on the packaging. This is a whole grain brand my family already enjoys, so I was relieved. Every other brand I picked up had HFCS.
The place where I was most pleased was the condiment aisle. While Heinz ketchup has HFCS, the Reduced Sugar variety does not. I have used the RS ketchup for years and enjoy it. This is the only kind I’ll buy now, when the guys’ regular runs out.
Planning on making teriyaki chicken tonight, I checked the label on my usual low-sodium teriyaki sauce and was surprised to find that it is HFCS-Free. The normal variety does contain HFCS, so I’ll be checking the low-sodium food options in the future to see if this is a regular additional benefit to low-sodium foods. My habit is to buy low-sodium options whenever possible, dating back to LT’s health problems in 2003. It’s one I’ve not felt the need to switch back since it’s no longer needed for him, and even when I was recently told to increase my salt intake I preferred adding salt to my portion rather than increasing the sodium for my entire family when we’re all used to the healthier alternative.
Also, all the Sugar Free Syrup (for pancakes) is also HFCS-Free since it uses sugar alcohols for sweetness. There are other concerns in using sugar alcohols, but I’ll leave it to you to be able to decide for yourself if you want to make the switch to them.
In general I have to say, YAY for my reduced sugar diet!
I was reading a post by my dear friend Jett and couldn’t help but notice how we are in similar situations. She’s struggling with weight loss, as am I. More importantly, the lack of quick results is affecting our efforts and has us both speculating on how to turn things around.
About a decade ago, I was at my highest weight, around 255. I lost down to 180 or so, but then due to life changes (illness of son, comfort of marriage, illness and passing of my mother) I gained about 30 pounds of that back. Major bummer.
I kicked off a new weight loss program in January of 2008, and slowly watched my weight go down 50 pounds. I had great success using a one-two punch of South Beach and lots of exercise, but also sabotaged myself with holidays, celebrations and stressful situations. After working extremely hard over the summer, to include training for running an entire 5k for the first time in my life, I was only about 12 pounds from my initial goal weight. I was also at the physical peak of my life when the health issue I’m dealing with hit at the end of October 2009. I went from 4 or 5 days a week at the track or in the gym, I was couch-bound. Before my diagnosis a few weeks ago, I’ve tried several times to exercise to disastrous results. My symptoms increased to a painful level and I would give up again.
I’m now pushing myself to walk every morning with Chooch and Kaylee, as I only feel comfortable doing so when he’s with me. I know if symptoms hit, I’m in the best possible hands. After the dizziness from that subsides, I do my shiny new exercises for my vestibular rehabilitation. I have insane dizziness after that. For instance, today I only felt human again after about 3 pm after finishing the exercises around 10 am and taking a nap afterward. Hopefully, this will fade but I will continue doing the second session right before bedtime since it effects me so strongly. I’m very hopeful that the walking on top of the exercise will also help me in my efforts to get my ass back to work faster!
The end result is that I’m moving again, and this brings me great joy in spite of the after effects. The other change I’m making is allowing myself more fruit, vegetables and whole grains than are allowed on Phase One of South Beach. I never intended to spend this much time on Phase One, and it’s not healthy for me long term. With heart disease on one side of the family and breast cancer on the other, I’m fully aware of the importance of high fiber diets. The foods I’ve added back in this week include carrots, bananas, apples, grapes and pineapple. Also, two high fiber/low glycemic index whole grain servings per day. I’m in heaven, as it feels so decadent to indulge in these on a daily basis.
The initial impact is that my weight is up a couple pounds, but I’m not surprised due to the increase in natural sugars and whole grain carbs along with slightly increased muscle mass. I’m not going to beat myself up, I’m just going to enjoy my sinfully sweet fresh pineapple slices and hope it all shakes out in the end.
I have full faith in both Jett and myself, and know that once we figure out what works for our individual cases we will kick ass and reach our goals.
I had an appointment with my neurologist yesterday, and am glad Chooch was again there to catch the details since I was violently pissed that the cardiologist didn’t follow up with me OR send the last results over. I have doubts about this final diagnosis until the neurologist can consult with the cardiologist, but based on the other results he had he is extremely confident that he knew what was wrong with me.
He has diagnosed me with two things: neurocardiogenic syncope and vestibular migraines. The former is because I fainted twice on occasions many years ago and then again during the tilt table test. This simply means that under EXTREME conditions, I may faint. Because I have not had any fainting nor feelings of faintness in years, except for very briefly immediately following Nat’s memorial service, this is not a concern a true concern at this time. Rather, it is something to be vigilantly aware of in order to prevent it.
The diagnosis relevant to my current health issues is vestibular migraines, which is actually a catch-all diagnosis for people like me that have run the diagnostic gamut with these symptoms and everything has turned out normal. It’s disappointing to have a diagnosis by default, because it means I will likely never have full faith in it. That said, the fact that I’m in otherwise good health is a tremendous relief.
One of the things taken off the table was the possibility of needing a pacemaker, and while I’m in awe of the technology I do NOT want to be in the position of relying on a machine surgically inserted into my chest to keep my heart beating at a regular beat. I hadn’t mentioned this beyond three people because I was so terrified of the possibility, and at that point it was speculative talk by the cardiologist and neurologist.
For treatment, the doc increased the dosage of the migraine medication I’ve been on since January. I’ve had no negative side effects like with the first prescription, and seem to have had a slight lessening in frequency and/or duration of most symptoms. He also prescribed new break-through migraine medication and four weeks of vestibular rehabilitation, which is essentially physical therapy for dizzy frakkers like myself. On first pass through google, it looks like, among other things, I’ll be learning out to walk with an exaggerated hip sway and with my eyes down. I’m very excited to start, because I really want to resume life, whatever that may mean.
He’s also lifted the driving ban since the recent tests cleared out seizures or loss of consciousness as concerns. I have to take great care, as I did before the ban, to only drive when I’m feeling 100% and have taken the necessary precautions to hopefully prevent an episode while driving. I don’t need the lecture on taking caution, I had driven less than a half dozen times in the previous two months based on how I was feeling. I’m nothing if not terrified of car accidents, so will tread carefully here.
Many thanks for all of the concern, I am humbled by the number of people that have reached out to me over the months in support and camaraderie. I am truly blessed, and I know it.
April of 2003 at a tulip festival in Oregon
I’m off to fix a birthday breakfast for my husband. No one has ever been as supportive of all my craziness, and has inspired me to be stronger and more brave than I ever thought possible. He is the most patient, kind and loving man I’ve ever met and deserves all the spoiling I can muster.
As anyone that knows me has already heard, the world lost a spectacular woman recently. Natalie Morris left this world at the young age of forty-five. She left behind an exuberant and gorgeous five year old daughter that goes by the nickname Sonic Boom. She will be raised by her loving and attentive father, author and podcaster Tee Morris.
Nat Morris and I on my 40th birthday.
I won’t claim to have known Nat intimately, but I won’t hesitate to call us good friends. Knowing Tee through the podcasting community for the last few years, I was introduced to Nat and we later got to know each other at parties and even were making plans to see each other the very weekend that Chooch and I attending her viewing. I cannot tell you how sad this lost opportunity makes me, and that instead of laughing and talking with her I was grieving the loss of her life and praying for her daughter to remember her throughout her life. I take comfort in my belief that Nat no longer has to hear me tell her something to know it. I believe she now knows what is in my heart without me even having to say it.
The loss of a friend is never an easy. But someone that has their own problems but still takes time to show concern and care for others, reaching out to offer comfort to another that has some difficulty… let’s just say that Nat was a rare gem. She was human, with all the exquisite flaws and frailties that this condition mandates. In spite of this, I always felt that Nat was doing her very best to raise her daughter by beautiful example of being a loving and caring person. Coming through drastic changes in recent months, her last conversations with me showed joy and happiness at things she was doing over the holidays, particularly those involving her beloved daughter. No one has ever loved a child more than Nat loves Serena.
Having lost my own mother to breast cancer four years ago at the age of thirty-six, I frequently feel adrift without her. Hell, last week I even referred to her in the present tense, so surreal is it that she’s gone. I don’t know what kind of woman I would’ve turned into without her strong and fiercely loving hand to guide me through life, but I am eternally grateful for the time I had with her. While Sonic Boom is devastatingly young to have lost her mother, I know that Nat has provided her a foundation of maternal love, positivity and acceptance that she will carry with her, even if she doesn’t know quite why.
On February 27th I was able to participate in a very small way in a community coming together to raise money for a trust fund for Sonic Boom. It was a staggering success, largely due to the tremendous efforts of author Philippa Ballantine and Podcasting’s Rich Sigfrit. Pip has worked tirelessly since Nat’s passing, in organizing a chip-in fund that raised over $20,000 and in planning and orchestrating the webathon that would be known as The Boom Effect. Over a hundred donors provided goods or services to be auctioned off, and Pip coordinated this event from beginning to end.
Rich Sigfrit used his big brain to piece together multiple platforms to create a live video feed of the auction, along with a bidding system, and conferencing software to bring distant participants into the live recording. Having witnessed the complex process at work, it is easy to see how much work Rich put into the development, testing and implementation of these elements to make the best possible webathon for Sonic Boom. I believe the hiccups that were experienced were from the huge number of people attending virtually and shortcomings from the service providers themselves. Rich’s innovation was able to overcome the obstacles and the ten hour webathon was a smashing success.
This success was also due to the help of many others, including Susan Z. who worked tirelessly behind the scenes wrangling the bids and tracking the winners. She took a difficult job and performed it beautifully and with great grace. Billy Flynn and his lovely wife Terri, of Geek Radio Daily, graciously opened their homes to host the webathon, and Billy co-hosted for the majority of the day alongside the tireless Rich Sigfrit. To provide brief respites for the hosts, various others jumped on the microphone and skype to help raise the bids on various items. These folks include my husband Chooch, along with Jett Micheyl, The Bruce, Philippa Ballantine, J.C. Hutchins, Sonic Boom’s father Tee Morris, and many others including Christiana Ellis who raised an additional amount for those that wanted to hear more of her upcoming sequel to Nina Kimberly the Merciless after having a taste of it in an earlier reading.
Am I forgetting people? Yes, and I’m very sorry. This was a day full of amazing generosity and kindness, and my head was spinning from it all. Add to that the darling Sonic Boom’s sparkling presence on and off the microphone and I will happily admit to having lost details of the day. To all those that donated, I am in awe of you. Our small donation to the auction was nothing compared to the time and efforts given by others. To the bidders, you truly rock in a fantastic fashion. At the end of the webathon, over $8,300 was bid and it all goes into a trust fund for Sonic Boom’s future with the remaining funds from the chip-in fund.
The fund now stands at just over $30,000 raised between donations and the webathon. I’m not exaggerating when I say that we were all stunned when Susan Z. brought in the final tally. I remain gobsmacked at the communal generosity and what it has done for this sweet child.
This is the first time I’ve written about Nat publicly since her passing, although I’ve re-written this blog a dozen times since her passing. I never posted it before because I wanted to ensure that the focus remained with Sonic Boom and the fundraising efforts. I didn’t want to shift focus to my grief and I still don’t want that. In fact, the outpouring of loving messages and unbelievable donations directed to Nat’s daughter gives me a new hope. I believe that while she tragically won’t have the tangible love of her mother to guide her throughout her life, she will never lack for adoration and loving support. To be clear, I have never doubted that Tee is a loving and strong parent and role model. Sonic Boom is in very capable and nurturing hands. My remaining hope is that Nat knows that she is loved and will never be forgotten.
After being sick for almost a week now (my first con crud!), Chooch was kind enough to take me to the doctor today. I argued with him missing another day of work, but since he was also feeling under the weather realized he needed attention as well. We headed to a nearby walk-in clinic that has a wonderful staff that has impressed us in the past.
We were whisked off to separate rooms, where we were separately ordered strep tests and later had chest x-rays to check for pneumonia. I love this office, they do the lab draws there and even have some tests they run while you wait (strep test). In the past, they’ve done an EKG on me as well. To have the chest x-rays done at the same facility also was a wonderful surprise and a relief not to have to go to the hospital and spend the rest of the day in line.
While waiting, I was able to do an allergy test which I have been needing for years. I suffer terribly during the Spring and Fall, but never knew exactly what my triggers were. The test involved having 62 or so serums scratched into my back, and then waiting to see if I had a reaction to anything. A few minutes later I knew I was having moderate itchiness, but wasn’t too surprised. Turns out I’m allergic to 22 of those tested, and I asked the nurse to take a picture of my back as Chooch always wants all the gory details and I thought he’d be disappointed in missing out on this display of medical freakdom. Sure enough, some of the welts were so big they joined with others.
We were both diagnosed with bronchitis (yay, clear chest xrays!), given prescriptions and sent on our way. I started feeling better after the second day, but am still trying to recover energy. The fatigue is pervasive, my friends. Chooch ended up getting much worse, and although the doctor said we weren’t contagious we were unsure as to whether or not to attend The Boom Effect webathon Saturday morning. He ended up returning to the doctor on Saturday morning (have I mentioned how much I love this place?!?) and was diagnosed with a mildly contagious eye infection from some odd settling of the bacterial infection in his right eye. Um, okay. The doc said if he took general hygiene precautions it would be fine, but you know us…
Chooch ended up getting a medical eyepatch from the pharmacy to ensure that he wouldn’t touch his eye and spread germs while around others. He attached hand sanitizer to his belt loop and continuously sanitized his hands all day long. When he added the bunny ears as Tee requested folks wear, it was *quite* the look.
Viv, Jett and Pirate Bunny Chooch. Image pilfered from Bruce Erb's facebook photo page. Thanks, Bruce! 😀
His eye is still recovering from the infection and he’s finally starting to feel stronger after the bronchitis.
For my first run in against Con Crud, I have to say that I’m now very impressed with the totality of the chaos it was able to inflict on our lives.
And yet, seeing Felicia Day again was worth it all.
Neither Chooch or I follow any sports, so the Superbowl has been something we’ve only observed for others. If either of the sons that lived with us was interested, or if we were invited to a party we would certainly watch but not when left to our own devices. Since it’s just the two of us today, we followed our usual protocol of recording it to skip through and watch the commercials and half-time performances and found other things to enjoy.
Chooch walked over to the store to get nacho fixin’s, and that’s all we ended up having for dinner. We settled in and watched Team America: World Police which we had neglected viewing previously. Needless to say, we found it very entertaining even though we were grossed out by the sex scene. Yes, we had been warned, but … wow. I had no idea puppets could do that!
Afterwards, the chocolate cake I was craving and baked was finished and we ate some of that. I’ve been dieting and am ramping up big time tomorrow and so this was kind of my ‘last meal’ of sorts to purge the cravings that have been haunting me. Mission accomplished *burp*
Chooch then headed upstairs to work on a video of Kaylee’s snowy adventures this weekend while I played some PS3 demos I’ve been wanting to try. I gave Peggle and Critter Crunch another try, but for mindless quick games I don’t know that I’ll get any further enjoyment outside of replaying the demos. Critter Crunch is more likely one I would get, simply because I can’t seem to get past that BLASTED level 5! Peggle is too easy, so no point in buying that.
A new game I tried was Bayonetta, and it was the graphics that really sucked me in. I usually prefer puzzle vs. fight games, but this one is really gorgeous. I greatly enjoyed the demo, in spite of the mildly graphic violence simply because the action moves so quickly it’s not gory to me. The most irritating thing for me was trying to ignore the catwalk strut she has. But her shoes, OMG, her shoes! WANT!!! Flashes of nudity as her clothing/hair unwind to do massive damage, but in the demo there was nothing you wouldn’t see on 10pm TV dramas. This may go on my wishlist, but I’m weighing it carefully since I already have so many things to distract me from projects around the house.
My least favorite moments of Superbowl Sunday? Sending a necessary but unpleasant email that would place complications on a friend, and later washing all the filters on my vacuum cleaner. Total frustration at my circumstances on the first, and a major gross-out on the second.
My favorite moments of Superbowl Sunday? A (too brief) visit with Man-Child, and later finding out that OPM already determined that the DC area offices will remain closed tomorrow. Another day with hubby, huzzah! Now we can brace for the snow storm that is currently predicted for Tuesday. Shoveling is great exercise, at least.
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.
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.
