Posts Tagged ‘About me’

REMEMBER THIS:

Don'tUnderestimateMe

Radical acceptance isn’t supposed to be bitter. It is supposed to bring peace.

So, I will now continue along my path, knowing, thinking, and noticing.

I don’t know what else to call this set of emotions that have lead me to say, “I’m done.”

I am just frustrated beyond words over  being marginalized by my healthcare providers, and really, just people in general.

I’m tired of the fight getting me nowhere.

I recently read something by Australian historian and author. Tim Flannery (The Eternal Frontier) that made me take serious pause: one person cannot change mass behavior that they believe to be inappropriate or immoral. By bringing such things to the attention of the majority, it creates hostility against the person. So, in other words, accept the bad/poor/inappropriate behavior and keep quiet. Accept it. That’s just the way it is. Morality never wins – the mob wins. (this is a paraphrase, not quote)

I have been unsuccessful at creating or joining a mob that can truly make a difference.

So, I am DONE.

Done doing my due diligence just to be ridiculed and then, ignored- not treated – told that I should “get used to getting older.”

Done doing this – what ever  you want to call “this.” Trying to gain acceptance as a human being, trying to get someone to care enough to try and help me, trying to teach people to advocate for themselves as I have tried to do… Maybe not forever, but for now, I am DONE.

WHY?

Maybe this is the straw that broke this camel’s back: I don’t think that the things that are going on with me now (like a sudden 10 lb weight gain; almost daily, debilitating migraines; hair loss; very easy bruising) are something I should just “get used to.” (Thanks for that sage advice, Doc.)  Just because simple blood tests show me as “normal” – isn’t it quite obvious things are far from normal? Example: I have had a bone infection for at least 4 months – it was discovered on a routine dental X-ray 2 weeks ago – but – it HAD been noted on an MRI in April. But, did ANYONE bother to address it – NO. I asked about the radiologists comment and was told not to worry. Who’s worrying? I just want such weirdness to addressed. Or should I just “radically accept” my conditions? (no, I’m not leaning towards the “church” of Mary Baker Eddy!)

Now, I am working on radically accepting that I am not going to get the care, attention, treatment, testing, concern and compassion others may be fortunate enough to get.

[If you are reading this, and are getting these things I listed in the previous sentence, please be joyous. Seriously.]

I am also trying to radically accept that my absence from the fight will not make one bit of difference on this overcrowded, selfish planet.

Now…I am DONE.

Day29

 

 

So It’s Day 29.  One more day to this blog challenge. To date, this year’s HAWMC has been one of my most successful blogging endeavors. I look forward to more blogging , but I only hope WEGO changes a lot of the prompts. I dislike being repetitive.

OK  – so none of those things I mentioned above count as my “three things” – the things I “love” abut myself, things I am great at doing, or things I just want to share. I’ve already done a lot of this stuff in this blog challenge, and if y’all haven’t picked up on any of it, don’t expect me to to go back and highlight them for you. Why?

Thing #1: I live in total FEAR of being considered “conceited.”  This dates back to 7th grade, when being conceited was a virtual death sentence and insured that you would get beat-up at lunch time on a regular basis by the gangs (yes – middle school GANGS in the 70’s), thus guaranteeing me a spot in the principal’s office each day at lunch time do that the school officials would know I could eat my meal without the fear of being pummeled. The fact that I looked about 2 years younger than I actually was didn’t help the fact. Nor, was it helpful that I was in the “gifted and talented” program – back when “gifted and talented” meant that you had some sort of academic prowess without trying –  and not that you were a regular on the short yellow bus,  as “gifted and talented” seems to refer to these days. So, when someone infers that I “think I am better than others” – It REALLY raises my hackles (even though I have yet to identify where the “hackles” actually reside). I don’t, in the least bit, think or assume that I am “better” than anyone – I just know that I have decades of experience doing research of all kinds, and that I have a decent grip on data management. Which leads into …

Thing #2:  How did I develop my research skills? Every single job, employment, or career I have had in the past 35 years has involved some sort of research and/or investigation. I met an attorney while I was working as a bartender at a racquet club (yes, a little weird) – and he thought my meticulousness as a bartender would make me a great paralegal (how he arrived at that decision baffles me, but he was right!).  He taught me the basics in about a week, and then relied solely on me to do his legal research while he was up in the courtroom defending his clients while Court was in session.  It was my job to run up to the Courtroom in the nick of time, much like on “Law and Order,” and deliver to him the case law that would ensure a win for his argument.

About 6 months later, I was faced with my first medical research project – a coworker was diagnosed with “pre-cervical cancer ‘ (what is now known as HPV). The doctor didn’t think much of it, and didn’t treat her – at all. In 6 months, the “pre” cancer had metastasized throughout her lower intestines and reproductive organs, necessitating surgery that left her sterile (sans lady parts) and without most of her large intestine – at age 26. Coincidentially, we had the same doctor, and three months after her diagnosis, a letter informing me that I had an abnormal Pap test arrived in the mail. (These days, you get a phone call urging you to haul yourself into the office ASAP and get that stuff taken care of). I quickly began to research  – the old-fashioned way – Al Gore had not yet invented the Internet, or if he did, DARPA had not yet  publicized its existence. I learned about cutting-edge (no pun intended) treatment for HPV, and that immediacy of removal of any lesions was considered “standard of care.” I was lucky enough to gather enough evidence on this, and present it to my insurance company, with the hope that they would urge some physician to address my situation. I was summarily ignored by the insurance company (what a surprise – not) –  so I contacted my senator’s office to bring him up to date on the matter. Thanks to him, I was granted the ability to receive the “new” treatment (laser surgery). The research I had gathered was successfully used to secure a judgment in favor of my co-worker against our lazy doctor that thought it best to just ignore HPV since only women of “low morals” got the disease (gee, thanks for the flattering character judgment, Doc).

I knew I had stumbled into something that was going to be a big part of my life – medical advocacy – but I had NO IDEA that the time and energy I would be spending in this new field would be mostly for my own, increasingly bizarre medical conditions: an exceptionally large ovarian cyst (a “dermoid” that was also fluid filled); autoimmune hepatitis; Raynaud’s  – which almost put a stop to my (short) powerlifting career; a strange constellation of symptoms that ended up being diagnosed as an autoimmune disorder similar to lupus; a rare reaction to an SSRI; back pain that was not originating from a spinal nerve as every doctor I saw thought, but from a genetic variant in a muscle and my sciatic nerve that had developed a mass of congealed nerves around it, causing extreme pain, radiculopathy and bladder dysfunction (for which I underwent FIVE unnecessary back surgeries); delayed sleep phase disorder that originated from the trauma I experienced as a toddler (finally proving that I’m not lazy – just extraordinarily vigilant); painful growth of accessory breast tissue in my armpits bilaterally that I was told was “just swollen lymph nodes,” sudden, extremely painful increase in breast size (5 sizes!) at age 46 that no doctor would address – which lead to the discovery of a cyst in my breast and a pituitary tumor; a hormonal response to pain medications that had never been acknowledged in females – only males – until recently…and now, my largest challenge to date – an autonomic nervous system disorder that doesn’t fit into any of the more common manifestations of these relatively rare conditions.

Thing #3: I am very skilled at researching. I take pride in the fact I try my hardest not to fall victim to “confirmation bias” as many researchers tend to do. I ferret out the best jumping-off points for my research, and rarely come up for air until I have the answer I originally set out to find. I break down my goals so that I am not looking for the “cure for cancer” at the outset. I would like to use my skills to help others, and blogging is my first step in reaching this goal. 

Bonus Thing: I am a decent photographer. I revel in capturing details that 99% of people seem to overlook, walk past, step on or throw away. (I REALLY dislike the fact people enjoy kicking mushrooms) – they are ruining a thing of delicate beauty and destroying an entire ecosystem with their selfish boot.) I would dnot have even become interested in photography, or learned how to “See” the little things, had it not been for several unsuccessful back surgeries (I have a genetic anomaly that has made things quite difficult for me to get any relief at all from my back issues) that forced me to leave my 14 year career as a litigation paralegal (not a secretary…a paralegal…the people that do all the work the attires get the credit for) and return to school to pursue a degree in science. A trip to Costa RIca to study invasive species provided a nice opportunity for OJT training and I was hooked after taking my first SD card of digi shots. I learned NOT to alter my images and rely on my “eye” to capture shots that didn’t need alteration. I like that I can do that. It is one of the only things about myself that I can talk about without feeling conceited – but proud. 

SpiderwithTealPedipalps

Noting is quite so beautiful to me as this picture of the first adorable jumping spider – did you know they had multicolored pedipalps that look like buck teeth?! And isn’t it so awesome that you can see ALL of his button eyes? Neat – huh?

IMG 0364The mushroom pic that started my love affair with photography. The light shining through the cap that showcases the delicate gills underneath are awe-inspiring – at least me to me. 

I’ve been waiting a long time do write this blog post- I often thought people wouldn’t care about what I thought was awesome, but then I realized – that is how all these mega-bloggers make it big. Here’s my chance!!

These are things I can’t imagine ever living my life without – no matter what health issues I have!

1. My husband, Kurt. A truly unique individual – an eclectic artist, musician, and collector of uniqueness including traditional Dia de Los Muertos items, eclectic and exquisite Hawaiian-style shirts (most recently including custom Rehn Spooner Pixar movie shirts). A unique, wry, sense of humor beyond compare and an uncanny ability to cull through the madness in the world and find the humor in it. I discovered Kurt in 2000. I cannot imagine life without him, and I don’t want to. “>20130423-213019.jpg Drawing of Kurt by Kurt – he wouldn’t let me use a photo….

2. My birds. I am blessed to share my living space with 4 precious, yet sometimes incredibly frustrating (and in the case if one other, downright evil) birds: 2 parakeets, a Citroen Cockatoo and a Severe Macaw. Nothing could ever replace these amazing creatures in my life. I have learned so much about life, patience, animal intelligence and unconditional love from them – plus the fact they love pizza and ice cream.

20130423-214508.jpg Q-Severe Macaw (photo by Kurt) “>20130423-223126.jpg Topaz-Crazy Citroen Cockatoo (Photo by Lori)

3. Our Dyson Hot+Cool. Yes, a heating and cooling device has a dear place in my heart. Not only has this miracle heating and cooling device saved us mucho dinero, it keeps me warm (and on the rare occasion, cool) in a gentle, comfortable, efficient way.

4. My iPhone5. It plays games with me. It is my stereo. It is my reference library. It connects me to the world – literally, and all it has to offer. It takes dictation so my Raynaud’s fingers don’t scream in pain. It broadcasts guided meditations, podcasts and sleepy-time music – just for me. It lights my way to the loo at night…and keeps me company when I can’t sleep with its fantastic apps. It’s also my Communicator and my Tricorder (yes, I am a Trekkie!).

5. My iPad Mini. Ditto all the above about the iPhone, but, it’s bigger and kinder on my aging and infirm eyes. It also has some cooler games than the iPhone – shhh, don’t let my iPhone know!!

6. Bliss’ “The Youth as we Know It” Night Cream and Serum. Nothing works as well or smells as good as this amazing anti-aging cream that contains everything you want or need in a night cream. I’ve been using it for about 8 years now. I’ve tried lots of anti-aging goop. This stuff out-rocks them all! (Psst…I get it at Amazon or Nordstrom Rack on sale….)

7. Lush’s “Big” Shampoo. This stuff is simply amazing, and doubles as a great exfoliating body wash! Leaves my hair (what’s left of it) fluffy and smelling oh-so-amazing. I’m even more thrilled that Lush has recently introduced a Big Conditioner too! Yea!

8. The love I had from my Mom, despite our distorted relationship. My mom passed away in early 2009, but I really lost her after a series of nasty strokes back in 2000. Our relationship was convoluted, codependent and confusing. But if not for my Mom, I would have never learned to laugh as hard at the silliest little things, learned how to make pies and lemon bars then eat them straight out of the pan, or made the best of some of the most heinous situations life can throw at you (like how to make sleeping in a public restroom in a National Park seem OK, and even fun).

9. Afrin Nasal Spray – the aerosol pump kind. First prescribed (yes, you young folks, it used to be RX only!) to me at age 8 by flight surgeons at the local Navy Dispensary (I was a, pseudo-Navy brat) to help with my sudden and severe allergy attacks, it has saved my bacon countless times over the past 41years. I cannot and will not be without it. Ever.

20130423-222312.jpg

10. And, speaking of bacon….BACON! Salt-carrying goodness that helps me keep my BP up and tastes great! My favorite brand s from Trader Joe’s – PreCooked, Uncured, No Artificial Stuff or rGH used. It’s thick and meaty and gives me a reason to get up in the morning when nothing else could make me leave the warmth and safety of my reclining place. Worth every penny!

20130423-222918.jpg

<a