Oct 18, 2014

I love to hear from you!

A BIG thank you to Mary over at A Body of Hope for making this for me! I love to hear from my readers and read your blogs! If you have a blog of you're own please share it with me! It is always great to hear from you guys and see what you're working on. There are so many talented people out there! Thanks again, Mary!

So True!

A friend and fellow dysautonomia warrior posted this on her Facebook this morning and it really resonated with me! People in the chronic illness community are among the strongest, bravest on earth.


October is Dysautonomia Awareness Month! What are you doing to raise awareness?

This October marks another great annual Dysautonomia Awareness Month. It is always so awesome to see the patient community rally together and do amazing things to help raise funds to support research and help raise awareness in their communities. It's inspiring to see young kids participating alongside their parents, making noise for turquoise! Thankfully, turquoise is one of my favorite colors! I love to wear it and also have plenty of bright turquoise throughout my house. I even painted a turquoise pumpkin for Halloween this year. If you can, get out there and raise some awareness in your community. Tell someone about dysautonomia. Help educate a new medical practitioner who may not know what it is. Find a fundraising idea and donate the funds to research. Or purchase something on Amazon.com through this page and part of every sale automatically gets donated back to dysautonomia research (it doesn't cost you a penny extra, amazon donates their share of the sale!)

There is lots happening online as well. Check out Facebook.com/DysautonomiaInternational for a daily dysautonomia factoid. I have learned SO many things I didn't know. There's also a live Tweet-A-Thon happening on October 23rd.


Oct 2, 2014

2014 In A Nutshell


On the eve of a very important appointment with a very important neurosurgeon, I find myself brimming with anxiety over the occasion. You'd think after seven years of health drama doctor's appointments wouldn't even phase me anymore, but the reality is, sometimes they still do. Especially the important ones. So I figured what better way to spend my evening than to engage in a little blogtherapy and update you all what's been happening in my life so far this year and also explain why I haven't updated this blog in ten months!

Let's start off with some happy news! In February I got engaged! The proposal was magical and perhaps I should save that story for a separate post! We were both so thrilled that we started wedding planning almost immediately but then we both took a step back and realized that planning a huge wedding was starting to get really overwhelming (and really expensive!) really quickly. The more I thought about it the more I realized that a wedding is merely one day and that the marriage itself is what really matters. So we went from wanting a huge outdoor wedding and reception to now wanting a very small, private, low-stress ceremony and will probably skip having a formal reception altogether. It just doesn't make sense to exhaust all of our physical and financial resources on one single day when the time, money and energy expended could be better invested in creating our home together. I've basically stopped wedding planning for now and I'm so much more at ease. We've agreed upon the perfect small venue and I am going to wear a gorgeous gown. I also want a cool, Cake-Boss style cake. But other than that our wedding will be no-frills, no fuss.

In April we started fixing up my fiance's house to put on the market. Boy was that a job! It really tested our patience as things just kept going wrong and the house proved to be a lot more work than any of us expected! Several weekend work parties, one dead cat (long story!) and countless manpower hours later, the house is finally listed on the real estate market and being shown! Cross your fingers for us that it sells soon so we can move forward with the next chapter of our lives.

In June I finally had an upright MRI of my brain and cervical spine as ordered by my primary care doctor for the wonky discs in my neck that kept going out. The MRI results confirmed my biggest fears: that I do indeed have a Type 1 Chiari malformation as well as cervical instability secondary to Ehlers-Danlos syndrome. I always knew Chiari was a distinct possibility because of my EDS, but I figured since my POTS has gotten so much better over time that I surely I didn't have any more comorbid conditions to worry about. Well, I was wrong. My Chiari measures a mere 5mm but I am symptomatic with headaches, balance issues and tingling extremities and have been for over a year now. So far I have seen a local neurosurgeon, had a Skype consult with Dr. Rekate of The Chiari Institute (who was wonderful and a wealth of information!) and have one more consult with the head of neurosurgery at the local University tomorrow. Dr. Rekate told me he trusts this surgeon's skill so I feel a bit better in knowing that he's highly regarded by his peers. However my cervical instability is perhaps more of an issue than the Chiari itself so I need to make sure my local doctors take it seriously and address it accordingly.

In July and August, I ended up getting sent for several additional tests: an MRI of my thoracic spine, an MRI of my lumbar spine, cervical x-rays in flexion and extension, a 3D CT scan of my cervical spine, and a cine MRI of my brain/c-spine. Am I ever sick and tired of MRI's! The good news is that my MRI's showed NO evidence of a syrinx or a tethered cord. Tomorrow I will receive the results of the cine MRI from the neurosurgeon and boy am I nervous. The cine MRI is a specialized MRI that assesses the cerebral spinal fluid flow or extent of the obstruction from the Chiari. I am hoping he tells me I don't need surgery, or at least not urgently. The prospect of brain/spine surgery scares the bejeezus out of me. And I would really like to focus on things like getting married and finding our new home. A surgery would certainly disrupt my plans. But will have to see what he says tomorrow and take everything one step at a time.

Can't believe it's already October which also happens to be dysautonomia awareness month! This month I look forward to getting 3 teeth crowned (ugh!) and watching copious amounts of Gilmore Girls on Netflix. It's also my mom's 60th birthday which is kind of a big deal. Not quite sure how to commemorate the occasion but she has been a huge support to me my whole life and especially these past few months as I have suffered some pretty rough days health-wise and dealt with yet another life-altering diagnosis. Wish I could buy her a really cool, expensive gift! Or send her on a vacation somewhere tropical and relaxing!

As for November and December, we are hoping my fiance's house will finally sell so we won't have to maintain it over the winter and I am really really hoping to avoid neurosurgery. I should know more about that tomorrow. Until then, thanks for reading! I have really missed blogging and missed hearing from my lovely readers as well! Hope you are all doing well and enjoying improved health and wellness!

Dec 11, 2013

2013 Year In Review


This year brought a lot of major life changes and new beginnings for me. Mostly positive ones. I moved to a new home in a different location and am now (finally!) comfortably settled in here. I am living within walking distance to a major doctor's office, lab and my physical therapy clinic. I'm also extremely close to groceries, gas and restaurants. The convenience of not having to drive everywhere has simplified my life a great deal. The appointment running has calmed down a bit too with the exception of physical therapy and dentistry that is. The dental work I've had done and am still having done has tried ever fiber of my being this past year. I only have seven more fillings and five more crowns to go before I am completely cavity-free. I have had a grand total of three root canals, one crown and three fillings done this year. The physical, emotional and financial stress of dental work is enough to drive anyone clinically insane. I realize I have to keep plugging away at fixing my teeth to avoid future root canals and extractions, as those are not an option for me.

My physical therapy appointments though tough, are also rewarding. I don't look at physical therapy as just another appointment, I view it as an integral part of my weekly routine. I am already seeing results in the strength department. Luckily I build muscle pretty quickly which is helping to stabilize my ankle along with the rest of my wobbly body. I am lucky to live right next door to such a great physical therapy clinic with a therapist who also happens to suffer from hypermobility and TMJD herself. Doing physical therapy as a teen saved her from having TMJ surgery and that experience was what led her to the field. I feel optimistic about the progress that I am making and feel myself getting a lot stronger each and everyday. I only go twice a week but have an intense home exercise program that I do daily, sometimes in my living room and sometimes at my apartment complex's on-site gym, which is another nice feature of the new place.

The first month after I moved was fraught with major challenges concerning air quality. I had selected and moved into a ground floor unit, but unfortunately the complex was built on a wetland and as soon as the rains started in my apartment reeked of a strong, sickening mold smell. So much for life in a "luxury" apartment. A home humidity monitor I purchased revealed that the internal humidity reached 75% everyday. A normal internal humidity level is between 30-50%. Anything above 60% provides ideal conditions for mold growth. I fought with the complex to let me move to another unit. An option which was totally feasible considering it was brand new construction and only a quarter of the units were occupied. Their corporate management initially denied my request calling the mold smell a "subjective" complaint since they couldn't pinpoint the exact source of the mold. Upon conducting a bit of careful research and calling the city building inspector it turns out that the problem was much larger than bleach or exhaust fans could have ever fixed. In order to remedy the problem, the building would have had to have been torn down completely. Because apartments are technically classified as commercial space (even though residents inhabit them as their homes,) the city allows them to build on concrete slabs without crawl spaces. They didn't allow the concrete slab to cure long enough in the construction process which resulted in a subsequent sponge-like effect on the foundation every time it rained. Every time it rained that damp moldy smell crept up into my home from the concrete floor, through my carpet and into the living space.

I finally moved into a new apartment in the same complex at the beginning of October after enduring a month of hell in a moldy apartment. I am now living on the second floor of an apartment that doesn't smell of anything other than whatever I have been cooking in the kitchen. My sinuses are much better now and I can actually breathe out of my nose in the mornings again. Something I had wondered if I would ever be able to do again. Although sinus surgery may become an inevitability down the road due to a deviated septum and bone spurring, for now I have dodged a major bullet by avoiding surgery. And I am happy to put it off for as long as possible unless it becomes a necessity. My new apartment feels much healthier and I can breathe easy here which is a huge relief.

I am doing decent in the health department at the moment (aside from a nagging, two-week old mystery upper right quadrant and back pain that landed me in the ER for bloodwork, an abdominal ultrasound and a HIDA scan to no avail and is currently being investigated by my primary care doc). My health is something I do not take for granted at all. For the most part my POTS is controlled and doing much better now that I've removed myself from the moldy environment of the other apartment. Earlier this year I had a scary bout with benign positional vertigo that finally subsided after taking a month round of Augmentin antibiotics for my sinuses. It was a scary time for me. Every time I layed on my right side or flat on my back I would get the spins. This continued for a few months with my doctor telling me it was "just some inner ear virus," and an ENT insisting it was benign positional vertigo spurred by spending too much time in a dental chair as I had a scary incident where some heavy duty dental drilling back in the chair spurred a major attack. Whatever it was, it is no longer happening to me now and I am so thankful. I had a follow-up with a new ENT the other day and luckily they were not able to trigger the vertigo in his office. Because of my history with rotational vertigo during dental work though, he wants me to undergo a more sophisticated test called a VNG early next year to measure eye movements during different positions and then conduct a repositioning procedure in the office to resposition any inner ear crystals that may have become dislodged.

In 2014, I still have plenty of work to do. I would like to make more strides in the health and fitness department with an emphasis on healthier eating. I definitely have some work to do in that department. I am fortunate to have a wonderful boyfriend who enjoys cooking for me, the problem is he enjoys cooking tasty comfort foods without worrying about things like nutrition content or calories. Oh well, I can't complain too much. I know how lucky I am to have someone who cares about me and takes good care of me. I am finally in a healthy relationship, one that I don't have to change myself for. Compared to my verbally abusive ex, this experience has been night and day and I am so thankful.

So to sum it all up, this year has brought some health ups and downs, but overall I'm in a good place health wise. I'm in a good place location wise after finally moving into a healthy apartment. And I'm in a great place relationship wise with someone who loves and respects me. Next year I intend to get my body in peak physical condition and hopefully start to renew old hobbies one by one without destroying my body in the process. For now I will have to say no to ballet but may take up pilates and yoga again in the new year.

Dec 8, 2013

Liebster Award!


I am honored to have been nominated for a Liebster Award by one of my favorite new bloggers and fellow potsy Brittany at Fabulously Faint. Admittedly I don't know much about the award except for the following: 

The Liebster Award is used by bloggers who have 200 follows or less on bloglovin' to promote each other and to make more friends in the blogging community and attract more attention to their blog. Each nominee must first list 11 random facts about themselves and then answer the 11 questions proposed by the person who nominated them. Lastly choose 11 bloggers and ask them your own 11 questions.

I in turn nominated eleven of my favorite bloggers! They happen to all have dysautonomia and/or related conditions.

Brooke at Growing Older, Growing Up?

C.M. at Life Unknown

Erin at My Life as ErinJ0

Kingsley at Life As Grike

Michelle at Living with Bob

Lauren at POTS Grrl

Hannah at Hannah's Dysautonomic Life

Candice at Infectiously Optimistic

Michele at Dysautonomia Normal

Jessica at Falling Apart At The Seams: My Life with Ehlers-Danlos

Anomie at Anomie Fatale: The Agalma Femme


11 Random Facts About Me!

1) I have Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Temporomandibular Joint Disorder.

2) I am obsessed with 90's pop culture nostalgia: toys, junk foods, music, television etc.

3) I adore the color pink and always have. Because some things never change.

4) My all time favorite book is The Great Gatsby.

5) I have perfectionistic tendencies and am very OCD about germs and cleanliness, though I have never been officially diagnosed.

6) I hold three bachelor's degrees including a degree in English Literature.

7) I loathe technology and hate trying to keep up with all the latest and greatest gadgets. I resisted the whole touchscreen smartphone craze for a LONG time. 

8) I am a dog person. If there are 20 people in the room and there are any dogs in that room, the dogs will always come sit on my lap. This phenomenon has happened on many occasions. We get each other and speak the same language!

9) I used to produce magazine style shows and host talkshows for government television.

10) I have naturally curly hair that is extremely hard to tame. I prefer to wear it straight but everyone else prefers it curly.

11) I used to dance ballet, jazz and modern dance and still really miss it. Ballet was my favorite.


Here are my questions courtesy of Brittany at Fabulously Faint:

Question #1
If you could only eat one food for the rest of your life what would it be?
Fruit Tarts. Undoubtedly fruit tarts. Anyone who hasn't tried one of these fine delicacies absolutely needs to. I would happily eat them everyday for the rest of my life. Fruit, chocolate, custard. All in one pretty little package. What's not to love?

Question #2
What's the most exciting/adventurous thing you have ever done?
Although I'm about as far from an adrenaline junkie as you can get, I'd say the most exciting thing I've ever done was meeting my favorite band and having a drink with the lead guitarist a few months before I got sick. I could have died happy that night.

Question #3
Describe yourself in three words.
Creative, kind and funny.

Question #4
Who inspires you?
Chronic illness survivors! That includes a lot of strong people. And anyone who stands up for injustice especially in the face of adversity! It takes a lot of strength to do such a thing. There are too many people I admire to name just one!

Question #5
What is your favorite piece of clothing?
My pink peacoat. It personifies me!

Question #6
If you could switch lives with someone for a day who would it be?
Someone who is in perfect health and optimal physical condition. I would take advantage of being in a healthy body for a day, that's for sure!

Question #7
If you could choose any career what would it be?
An interior designer! It wouldn't even feel like work to me, I would likely enjoy every second of it!

Question #8
What is your guilty pleasure?
Reality TV. Shows like Keeping Up With The Kardashians and Dance Moms especially.

Question #9
What is your dream vacation?
Australia. I have always, always wanted to see the Sydney Opera house on New Year's Eve and to hold a koala bear!

Question #10
Who are your style icons?
Anna Nalick. I was at her concert recently and we happened to be wearing the exact same ankle booties! Her style is unpretentious yet pretty and feminine. Timeless, not trendy. She always utilizes vintage or eclectic finds skillfully. She is not flashy but classy and refined and doesn't feel the need to dress trashy like so many other female performers this day and age.

Question #11
What is your biggest achievement?
Being Valedictorian and voted most likely to succeed in my high school yearbook. It was flattering that my peers had such a favorable opinion of me and nice to be valued for my intellect. Especially these days now that POTS induced brainfog has seemingly clouded my once sharp intelligence. If nothing else it's comforting to know I was once a brainiac!

Nov 24, 2013

My Childhood Idol Coped with Chronic Illness Too!


Every oh so often I get nostalgic for the great 1990's. For me, my childhood represents a simpler time when I was blissfully healthy and carefree. I was always singing and dancing. And so were my friends. I fondly and distinctly remember one of our favorite childhood pastimes was to "play TLC." We would spend hours getting dressed up like TLC, performing dance routines to their music videos that we had memorized and singing along with the lyrics of every song. We even did our makeup to do our best to resemble our respective songstresses: T-Boz, Left-Eye and Chilli, the CrazySexyCool girl group that dominated the 90's and revolutionized the faces of hiphop, R&B and pop music. They were the epitome of girl power long before the Spice Girls ever came to be. All I ever wanted to be when I grew up was a member of TLC. Nevermind the fact that I was a little white girl from the suburbs. In my eyes, they were the coolest, prettiest chicks on the planet. I identified with them. They were three petite young women who could sing and dance with style. They preached about self-esteem, safe sex and friendship among other things. I absolutely idolized them. I'm certain many other little girls of the '90's shared my sentiments.

The other night I finally watched CrazySexyCool: The TLC Story, VH1's biopic of the epic girl group's rise to stardom. I was extremely impressed with the casting of this film, as the actresses were near doubles of their characters, especially 'Lil Mama who portrayed Lisa "Left-Eye" Lopes with a keen awareness of her character. She had clearly done her homework. I also appreciated the music video reenactments which were spot-on. I had a fun walk down memory lane but also shocked by the level of turmoil each TLC member experienced behind the music. Tionne "T-Boz" Watkins' story struck a nerve within me as it hit particularly close to home. She battled a rare chronic, genetic and life-threatening condition called sickle-cell anemia and was hospitalized for it on several occasions. Initially she kept her illness a secret from the public and the press as it is largely an invisible illness. At the height of TLC's fame she came out about her illness and went on to become a spokeswoman for the Sickle-Cell Anemia Association. She was told she'd never live past 30 and never have children and she has done both. She has a beautiful little girl named Chase and is still managing to live a full life in spite of her illness.
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Her voice is still as rockin' as ever, as she and Chilli reunited in the recording studio at the end of the movie. What I didn't realize was that while TLC was touring, their second manager scheduled hospital breaks for T-Boz and had EMT's on hand at all times who were prepared to manage her condition. When I was a little girl I had no idea what my favorite singer was going through with her health behind the scenes of what I perceived as a glamorous lifestyle. Now that I have a better understanding of their personal struggles, I have even more respect for the girl group I already revered. They will always, always be my favorite. If I could ever do lunch with the remaining members of TLC, my life would pretty much be complete.

For more information about sickle-cell anemia, please visit http://www.sicklecelldisease.org/.

Nov 23, 2013

Shop at Amazon to Support Dysautonomia Research!


Whether you're a big holiday shopper or simply make purchases from Amazon once in a blue moon, please shop through this link to support dysautonomia research. Simply use the Amazon search box on the right of the page to find the item you're looking for before making your purchase.

You can purchase ANYTHING from Amazon and 4-6% of your total purchase will automatically be donated to dysautonomia research without costing you a dime extra. There are no gimmicks here. All you have to do is remember to click through the box on the Dysautonomia International webpage before putting items in your cart.

I am on the Patient Advisory Board at Dysautonomia International, an organization I am proud to be a part of. Dysautonomia International has made funding research their primary objective in hopes of ultimately supporting the discovery of a cure or new and improved treatment options for patients. More research leads to more awareness in the medical community and at large. More research and better physician awareness will also help render dysautonomia more of a household name like lupus or multiple sclerosis instead of an illness that sounds obscure and and foreign to people. Education is key and it often starts with educating doctors and providers in the medical profession so that they can begin to recognize and diagnose dysautonomia, thus leading to more prompt patient treatment and better, more thorough and comprehensive care overall.

Nov 14, 2013

POTS: The Pretty Girl Disease?


While I may be a tad bit biased, I think POTS patients are among the coolest people in the world. Also among the prettiest. And is it some sort of eerie coincidence that there are many potsies who are models? Take rising star Alexandra Agro (pictured above) from the latest season of America's Next Top Model. Unfortunately she became very ill due to a POTS episode and missed what became her final elimination ceremony. There is also Marissa Irwin, an EDS patient who suffered from Chiari Malformation and POTS and was featured on an episode of Mystery Diagnosis. One of my best friends also suffers from POTS and is an up-and-coming model with great star potential.

While I don't have any concrete scientific evidence to back up my claim, maybe someday researchers will study the POTS-pretty girl phenomenon. One thing I know to be true: POTS patients are beautiful inside and out, in spite of having wacky, temperamental autonomic nervous systems!

Here is a link to an Alexandra Agro interview where she discusses her POTS with Reality TV World:
http://www.realitytvworld.com/news/exclusive-alexandra-alex-agro-talks-top-model-guys-%26-girls----again!-15399.php

Here is the Mystery Diagnosis episode featuring model Marissa Irwin in its entirety:



And, just for fun, here is Keri Hilson's "Pretty Girl Rock." (Disclaimer: The lyrics of this song are in NO WAY meant to imply that POTS patients are arrogant or conceited about their looks. I just happen to really like this song. It's equal parts cheesy and catchy.)

Nov 13, 2013

Cucumbers are Cool...And Curative!

While I very seldom read email forwards, the ones from my grandma tend to be useful and from reputable sources. This one, detailing the health benefits and myriad household uses of cucumbers, caught my attention. I already knew cucumbers were healthy. An alkaline food, they help balance pH and are one of the only foods that never cause me acid reflux. They really seem to help settle my stomach and are refreshing. I also love me a cucumber peel facial. Here is the email forward verbatim:

Never thought that CUCUMBER can do so much!

The Amazing Cucumber

This information was in The New York Times several weeks ago as part of their "Spotlight on the Home" series that highlighted creative and fanciful ways to solve common problems.

1. Cucumbers contain most of the vitamins you need every day, just one cucumber contains Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Folic Acid, Vitamin C, Calcium, Iron, Magnesium, Phosphorus, Potassium and Zinc.

2. Feeling tired in the afternoon, put down the caffeinated soda and pick up a cucumber. Cucumbers are a good source of B Vitamins and Carbohydrates that can provide that quick pick-me-up that can last for hours.

3. Tired of your bathroom mirror fogging up after a shower? Try rubbing a cucumber slice along the mirror, it will eliminate the fog and provide a soothing, spa-like fragrance.

4. Are grubs and slugs ruining your planting beds? Place a few slices in a small pie tin and your garden will be free of pests all season long. The chemicals in the cucumber react with the aluminium to give off a scent undetectable to humans but drive garden pests crazy and make them flee the area.

5. Looking for a fast and easy way to remove cellulite before going out or to the pool? Try rubbing a slice or two of cucumbers along your problem area for a few minutes, the photochemical in the cucumber cause the collagen in your skin to tighten, firming up the outer layer and reducing the visibility of cellulite. Works great on wrinkles too!!!

6. Want to avoid a hangover or terrible headache? Eat a few cucumber slices before going to bed and wake up refreshed and headache free. Cucumbers contain enough sugar, B vitamins and electrolytes to replenish essential nutrients the body lost, keeping everything in equilibrium, avoiding both a hangover and headache!!

7. Looking to fight off that afternoon or evening snacking binge? Cucumbers have been used for centuries and often used by European trappers, traders and explores for quick meals to thwart off starvation.

8. Have an important meeting or job interview and you realize that you don't have enough time to polish your shoes? Rub a freshly cut cucumber over the shoe, its chemicals will provide a quick and durable shine that not only looks great but also repels water.

9. Out of WD 40 and need to fix a squeaky hinge? Take a cucumber slice and rub it along the problematic hinge, and voila, the squeak is gone!

10. Stressed out and don't have time for massage, facial or visit to the spa? Cut up an entire cucumber and place it in a boiling pot of water, the chemicals and nutrients from the cucumber with react with the boiling water and be released in the steam, creating a soothing, relaxing aroma that has been shown the reduce stress in new mothers and college students during final exams.

11. Just finish a business lunch and realize you don't have gum or mints? Take a slice of cucumber and press it to the roof of your mouth with your tongue for 30 seconds to eliminate bad breath, the photochemical will kill the bacteria in your mouth responsible for causing bad breath.

12. Looking for a 'green' way to clean your faucets, sinks or stainless steel? Take a slice of cucumber and rub it on the surface you want to clean, not only will it remove years of tarnish and bring back the shine, but is won't leave streaks and won't harm you fingers or fingernails while you clean.

13. Using a pen and made a mistake? Take the outside of the cucumber and slowly use it to erase the pen writing, also works great on crayons and markers that the kids have used to decorate the walls!!

Pass this along to everybody you know who is looking for better and safer ways to solve life's everyday problems.